Hospice and end of life care
Hospices widen care services.......so take advantage earlier rather than later.
The Hospice and Palliative Care Federation of Massachusetts contains a complete and current listing of hospices within the state.
Call (800)-962-2973 or (781)-255-7077 or check their website at http://www.hospicefed.org
We use
CareGroup Parmenter Home Care
@
One Arsenal Marketplace
Watertown, MA 02472
Tel: 617-673-1700
Fax: 617-673-1750
www.caregroupparmenter.org
Avoiding the Call to Hospice
By Paula Span : NY Times Article : May 26, 2009
What if I told you about an organization you could call when your elderly parent became so seriously ill that it appeared unlikely she’d recover?
What if I told you that this organization would send well trained nurses to see your parent, aides to lend a hand with daily care, a social worker to help the family grapple with the emotional difficulties? That these folks would deliver equipment you might need — a hospital bed, say, or wheelchair — and all your parent’s drugs? What if they’d also send a chaplain if you wanted one? And provide a nurse to call 24/7 when you had questions or problems? And volunteers who would stay with your parent while you took a few hours’ break, even if just for a long, quiet walk?
And what if I told you all this would cost you nothing, that Medicare would pay for it all? You’d pick up the phone, right? It’s what caregivers so often yearn for and so seldom can locate: expertise, compassion, help that they can afford.
Now, what if I told you this organization was a hospice?
You might still call — the proportion of American deaths involving hospice care is climbing steadily. In 1998, when my mother was a hospice patient, the figure was only 18 percent;
But even if you did call, odds are you’d have waited so long that the hospice team would have very little time to do what it’s good at doing — providing care and comfort to the dying and their families. My mother, diagnosed with uterine cancer, was in hospice care for three months, thankfully. Overall, though, the median length of stay in hospice is just 20 days, and almost a third of patients enroll a week or less before they die.
Yet in surveys after patients’ deaths, more than 98 percent of family members say they would recommend hospice to others.
Why do people wait so long to call? Why let what’s invariably a wrenching time be even harder than it has to be?
Sometimes, simple misconceptions are to blame. People may think of hospice as a place rather than a service that aims to let people die in their homes. (A few hospices also operate residences.) Or they think hospice is for cancer patients, though in fact the majority of those in hospice have other terminal illnesses.
Doctors may neglect to mention hospice care, or even discourage it. (Maybe you’ve heard the grim joke: Why are coffins nailed shut? To keep doctors from administering more chemotherapy.)
A study released by a Harvard Medical School team found that about half of patients with metastasized lung cancer, the leading cancer killer, didn’t discuss hospice care with their doctors within four to seven months of diagnosis. Yet the average post-diagnosis survival for metastatic lung cancer is just four to eight months.
Sometimes, though, it’s families who don’t want to hear the word hospice. They think it’s giving in, relinquishing hope.
“Nobody wants to say yes to death,” said Don Schumacher, president of the National Hospice and Palliative Care Organization. “America is a death-denying society, much more than others. And the health care system wants to continue to treat and treat and treat.”
So even if your physician will sign the form saying that in her best judgment, death is likely to occur within six months if the disease follows its normal course — and that’s all that’s needed to enroll in hospice — often it’s the children who can’t bear to acknowledge that a father probably won’t rebound this time, that a mother is dying.
So families wait. And the parent dies anyway — maybe in pain that could have been eased, maybe with fears that could have been assuaged or lessened had hospice workers been able to offer more than brief crisis management.
How much hospice care is optimal? Mr. Schumacher thinks three months. Regina Bodnar, director of clinical services at Gilchrist Hospice Care in Baltimore, would prefer six months. But the median stay for a patient in her hospice last year was just 16 days. By the time hospice workers gets a call, said Ms. Bodnar, “the patient and family have been going it alone for weeks and months.”
“They deserve much more attention and assistance,” she added.
It’s a pity, isn’t it? Eleven years later, I still remember my mother’s aide Terry, who sewed a small doughnut-like pillow to prevent pressure sores from developing on Mom’s ear as she spent more time in bed. I wouldn’t ever have thought of that, but I wasn’t a specialist in end-of-life care. I was just glad we’d reached out to people who were.
Paula Span is the author of “When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions,” to be published next month by Grand Central Publishing.
Most cancer doctors avoid saying it's the end
By Marilyn Marchione : AP Medical Writer : June 15, 2008
One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived.
He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.
"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list" — things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home.
Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.
New research shows they are wrong.
Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.
Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.
Convinced of such benefits and that patients have a right to know, the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate.
Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks.
"That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.
Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.
"Boiled down, it's 'Talking about dying will kill you,'" she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."
The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston.
It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.
Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.
About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.
That rings true, said Marshall, who is Mulligan's doctor at Georgetown University's Lombardi Comprehensive Cancer Center. Patients often are relieved, and can plan for a "good death" and make decisions, such as do-not-resuscitate orders.
"It's sad, and it's not good news, but you can see the tension begin to fall" as soon as the patient and the family come to grips with a situation they may have suspected but were afraid to bring up, he said.
From an ethics point of view, "it's easy — patients ought to know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer Center in Seattle. "Talking about prognosis is where the rubber meets the road. It's a make-or-break moment — you earn that trust or you blow it," he told doctors at a training session at the cancer conference on how to break bad news.
People react differently, though, said Dr. James Vredenburgh, a brain tumor specialist at Duke University.
"There are patients who want to talk about death and dying when I first meet them, before I ever treat them. There's other people who never will talk about it," he said.
"Most patients know in their heart" that the situation is grim, "but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it," he said.
Sometimes it's doctors who have trouble accepting that the end is near, or think they've failed the patient unless they keep trying to beat the disease, said Dr. Otis Brawley, chief medical officer at the American Cancer Society.
"I had seven patients die in one week once," Brawley said. "I actually had some personal regrets in some patients where I did not stop treatment and in retrospect, I think I should have."
James Rogers, 67 of Durham, N.C., wants no such regrets. Diagnosed with advanced lung cancer last October, he had only one question for the doctor who recommended treatment.
"I said 'Can you get rid of it?' She said 'no,'" and he decided to simply enjoy his final days with the help of the hospice staff at Duke.
"I like being told what my health condition is. I don't like beating around the bush," he said. "We all have to die. I've had a very good life. Death is not something that was fearful to me."
Hospice Care Sought Far Too Late
By Alice Dembner : Boston Globe : September 14, 2004
Patients with terminal illnesses are seeking hospice care far too late to get the full benefits of in-home nursing, counseling, and pain control that can provide a comfortable death, according to doctors and hospice providers.
More than one-third of US hospice patients die within a week of enrolling, according to the National Hospice and Palliative Care Organization. The delay results most often from patients' unwillingness to give up on a cure, as last-ditch treatments for cancer and other terminal diseases become more available and tolerable. Traditional hospice programs require that patients forgo life-extending treatment; in addition, because of tight funding, some programs will not accept patients getting expensive treatments.
To reach more patients, hospices are providing more medical treatment, and other programs are forming that offer some hospice-style support while patients continue life-extending medical treatment.
''More hospices are moving beyond the days of giving morphine and holding hands," said D. Rigney Cunningham, executive director of the Hospice and Palliative Care Federation of Massachusetts. ''We're trying to take care of more patients with more complicated treatments."
Nationally, hospice use is growing, reaching 950,000 people in 2003. But the median length of time in hospice care declined from about a month in 1995 to three weeks in 2001, according to the national hospice organization. In Massachusetts, Cunningham said, the median is just 16 days.
The national number rebounded slightly in the past two years, which hospice specialists said may reflect the agencies' efforts to change.
Patients and their families get the most from hospice if they enroll months, not weeks, before death, many end-of-life specialists believe.
But many new treatments have fewer side effects than older drugs and can be taken at home. That is reinforcing a common longstanding reluctance to accept that death is imminent, doctors said, and encouraging more patients to pursue treatment longer before seeking hospice care.
In addition, some of the same treatments that can extend life also are effective for easing pain in dying patients, blurring the lines between cure and comfort care. As a result, some doctors delay referring patients to hospice in the belief that hospices will not cover these treatments, even if they are used solely to relieve discomfort.
''It's a big problem," said Dr. Jennifer Temel, a thoracic oncologist at Massachusetts General Hospital who researches the importance of symptom management in patients' quality of life.
Temel said she has delayed referring patients to hospice at least 10 times this year so that patients could try Iressa, an oral chemotherapy drug that shrinks tumors in about 10 percent of patients with advanced lung cancer who have not responded to other treatments. One patient saw a dramatic turnaround, but most do not, and would benefit from simultaneous hospice care, she said.
Boyd Arnold was one of her patients who delayed enrolling in hospice care. In July 2003, Arnold was diagnosed with lung cancer that had spread to his brain, bones, stomach, and lymph nodes. The grim prognosis -- three to six months -- qualified him for hospice, which is typically restricted to those with six months or less to live. But Arnold hoped ''to be in the 2 percent who survived the disease," said his wife, Jackie. Together for five years, they hurriedly married on the day he got the bad news.
Boyd got radiation and standard chemotherapy, but that did not stop the cancer's march, Jackie said. So he turned to experimental chemotherapy. That shrank the brain tumor and stabilized the tumors in his lungs, allowing him to surpass the expected six months. But then the drugs began to cause complications. At 11 months, he learned the cancer had crept into his liver.
Temel, his doctor, suggested hospice, but the couple were not willing to give up hope. They postponed calling hospice while Boyd tried Iressa. After three weeks, he was still deteriorating, but again they delayed hospice to get a month's refill of Iressa. Finally, with Jackie physically and mentally sapped from caring for her 56-year-old husband at home, they called in hospice -- just eight days before his death, as it turned out.
Hospice workers brought a hospital bed, a wheelchair, and a shower stool to the Arnolds' home. They sent an aide to help bathe Boyd, and provided several different nurses that week to check on him. But in just a week, the Arnolds did not have time to use the full range of nursing, social, and spiritual services available through hospice to prepare for Boyd's death.
While the nurses provided morphine for Jackie to administer, for example, she was not sure how much to give in his last days and erred on the low side, leaving him in some pain, according to Temel. And on July 25, when Boyd's breathing became shallow and quick, he died before a hospice nurse arrived to help Jackie.
''It was as if someone threw you a lifeline, but didn't tell you how to use it," said Jackie.
Hospice officials say they are trying to reduce barriers to hospice care and adapt to the change in end-of-life medical treatments.
A survey two years ago by the state hospice federation indicated that 14 percent of the state's 44 hospice agencies would not admit patients on palliative chemotherapy or palliative radiation, treatments designed to reduce pain and other symptoms, according to Cunningham. But nearly all now say they accept at least some of these patients on a case-by-case basis.
''Historically, someone who was receiving radiation was working more in a curative bent," said Diane Bergeron, executive director of Hospice Care Inc. of Stoneham, which accepts patients on Iressa or palliative radiation but gets few such referrals from doctors. ''Now, that's not necessarily true."
The cost of the treatments remains a hurdle, however. Medicare and most private insurers pay hospice a flat daily fee for all care of a patient -- Medicare's payment in Massachusetts is $133 a day. Drugs such as Iressa can eat up half of that, according to doctors and hospice providers. And Medicare has not changed the program much since it was established as a benefit in 1983.
To help families such as the Arnolds, patient advocates are beginning to press for a change in the Medicare hospice benefit to allow more treatment in parallel with comfort care. Doctors and hospice officials are pushing for an increase in the daily fee Medicare pays to hospice programs.
In addition, many hospitals and home health organizations are developing programs that bridge the gap between cure and hospice by offering home nursing care and support services while patients are still getting aggressive treatments. Medicare and many insurers cover these programs for homebound patients. Aetna, one of the nation's largest insurers, will begin a far more expansive pilot program in January, covering hospice and curative care simultaneously for the last year of a patient's life.
At MGH's cancer center, referrals to such bridge programs are increasing as hospice referrals fall, said oncology care coordinator Beverly Hudson.
''Ultimately, the system is not at all set up to support what patients need at the end of life," said Elizabeth Liebow, an official at Partners Healthcare who is working with the doctors and insurers to change that. ''It's not keeping pace with where the current treatments are."
A Humorist Illuminates the Blessings of Hospice
By Jane E. Brody : NY Times Article : January 23, 2007
As the self-described “man who would not die,” the humor columnist Art Buchwald was a strange bedfellow with the hospice movement. But in the months between the end of his extended hospice stay and his death from kidney failure on Wednesday at age 81, Mr. Buchwald was a living testimonial to the benefits of hospice care.
What he hoped to do, he wrote in his recently published book, “Too Soon to Say Goodbye” (Random House, 2006), was make “hospice” a household word. “Unless they’ve had some experience with it, the hospice is still a mystery to most people,” he wrote. “Because hospice deals with death, people tend not to talk about it.”
Early last year, Mr. Buchwald wrote, after his kidneys failed, after he lost half a leg and after doctors told him he would have to be on dialysis for the rest of his life, he decided “enough already.” So he moved from a critical care bed to a comfortable room in a lovely hospice in Washington, D.C., to await his death, which his doctor expected would come in a few weeks.
But Mr. Buchwald managed to charm the Angel of Death. He did not die. Instead, his kidneys rebounded while he entertained a steady stream of visits from the rich and famous and ordinary in his hospice living room. And while his doctors said his kidneys would surely crash again soon, they did not. Finally, after five months of having “a swell time — the best time of my life,” Mr. Buchwald checked himself out of hospice to resume an ordinary life of a famous old funny man.
He continued to write his column and he worked on his book, in which he provided a first-hand account of the advantages of hospice.
“The hospice gives a person the opportunity to die with dignity,” he wrote. “It provides care, help, and as much comfort as possible.”
And not just for the person who is dying. As Mr. Buchwald described his experience, “When the patient enters the hospice, an entire team sets to work to meet the family’s needs — a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator, and of course, the volunteers,” who give nurses more time to spend with patients by answering phones, screening calls and running errands.
An Underused Service Hospice services, in institutional settings or at home, benefit only about one person in three who dies in this country. “There are still over one million Americans who die each year without receiving hospice or hospice-type services that would have benefited them and their families,” according to a report, “Access to Hospice Care,” produced in 2003 by the Hastings Center.
And for most who do get hospice care, the benefit is short-lived, with the average patient receiving care for less than three weeks, 1 person in 3 for the last week of life, and 1 person in 10 for the last day of life.
With time in hospice so short, staff members often lack the opportunity to provide optimum care for a dying patient’s physical and emotional needs. It can take days or weeks to determine the best way to control a patient’s pain, to help a patient tie up life’s loose ends and to fulfill a patient’s spiritual and emotional needs.
The most common report from families after a loved one’s death is regret that hospice had not been called in sooner. In a study of 275 patients, families that benefited from hospice thought three months would have been optimal and that less than three weeks was too short.
There are several reasons that more patients do not go into hospice care earlier. One is the Medicare-dictated requirement that patients entering hospice forgo life-prolonging treatment for their disease and waive coverage that would pay for such treatment. Some patients or their families refuse to stop therapy for a fatal disease, even when it is obviously not helping.
Only comfort care is covered through the hospice benefit, and patients sometimes have to fight for therapies to control distressing symptoms, like blood or platelet transfusions, that may coincidentally prolong their lives.
Medicare also requires that the doctor referring someone for hospice care must certify that the patient is expected to die within six months. Doctors — as was the case with Mr. Buchwald — are notoriously poor at predicting life expectancy unless patients are within days or hours of death. And for most life-threatening chronic diseases — congestive heart failure, kidney failure — it is impossible to predict longevity with the precision that Medicare requires.
Some doctors fear allegations of fraud if patients they refer to hospice do not die within six months, and so are afraid to make an early referral even when patients are ready to end life-prolonging treatments. And, as the Hastings report noted, “Fearing denial of reimbursement and ensuing financial difficulties, some hospice programs are denying access to those whose condition is not worsening or who might stay for so long that they would bring regulatory scrutiny upon the hospice agency.”
Finally, there are simply not enough hospice centers and services available to meet the needs of dying patients throughout the country. Most hospices operate on a shoestring, supported by donations as well as reimbursements from Medicare and private insurers. Insurers rarely cover the full costs of operating a well-run hospice service. Yet good hospice care costs far less than treatment of dying patients in hospital intensive care units, which insurance does cover.
Understanding End-of-Life Care The philosophy of hospice is to neither hasten nor postpone death. As Dr. Matt Kestenbaum, the medical director of Mr. Buchwald’s hospice, put it: “We’re not here to pull the plug. We let nature take its course, and we give patients all the things they need to be comfortable.”
Dying “naturally” in hospice does not preclude treatment for common complications like blood clots, urinary tract or respiratory infections or painful bone metastases from advanced cancer. Hospice expenses are automatically covered by Medicare. Most employer-based and private insurers provide hospice coverage as well.
Choosing hospice care does not mean patients lose the services of their personal doctors. Nor are they penalized if, like Mr. Buchwald, they leave hospice care because their condition improves or they want a therapy the hospice does not provide. They can return to regular insurance benefits, and should the need arise later, they can reinstate hospice benefits.
One concern of doctors is that patients will lose hope if they go into hospice. But the goal should be to refocus hope on what might be realistically achieved in the time remaining. A patient who enters hospice sooner rather than later can have the opportunity to spend quality time with family and friends, settle unfinished business and find closure to strained relationships.
For those who wish to obtain hospice care at home, it is essential to have a caregiver — usually a spouse or other family member, or a partner or friend — who is willing and able to take primary responsibility for the patient, assisted by the hospice team. For patients who need nursing home care, there are many hospices that have contracts with local nursing homes.
Ideally, patients or families should research hospice options well in advance of needing them. Check the Web site for the National Hospice and Palliative Care Organization, www.nhpco.org, and click on Find a Provider. Or call (703) 837-1500 . The Web site provides a list of questions to ask when seeking hospice services.
A Chance to Choose Hospice, and Hope for a Cure
By Reed Abelson : NY Times Article : February 10, 2007
The American health care system has long given patients a terrible choice: people told that they have a terminal illness must forgo advanced medical treatment to qualify for hospice care. Cancer patients have to pass up chemotherapy, for example, or patients with kidney failure must abandon dialysis.
Forcing patients into this either-or decision has prompted many who might benefit from a hospice program to instead opt for expensive hospital care that may end up costing Medicare and other insurers far more.
But now, some hospice programs and private health insurers are taking a new approach that may persuade more patients to get hospice care for the last months of life. These programs give patients the medical comfort and social support traditionally available through hospice care, while at the same time letting them receive sophisticated medical treatments that may slow or even halt their disease.
Hospice care is intended to help patients and their families better cope with the end of life by providing social services and special care.
Experts say that if the new approach catches on more broadly, more patients who would benefit from hospice care will actually enter hospice programs — and enter them earlier. And more patients, they say, could avoid the costly, crisis-ridden final weeks in a hospital that often still represent the American way of death.
In 2005, only about a third of the 2.4 million people who died in this country were in hospice care. Perhaps twice that many patients should have been in hospice programs, according to specialists in the field. And even many of those who entered hospice care did so only at the very end of their illnesses, spending a week or less in a program that ideally would have helped them cope with the final six months or year of life.
For too many of those patients, “that’s not hospice; it’s last rites,” said Dr. John W. Rowe, the former chairman and chief executive of Aetna, one of the big insurers that is rethinking hospice care.
UnitedHealth is another insurer that now lets hospice patients also receive advanced medical treatments. Meanwhile, some of the nation’s 4,200 hospice programs are offering advanced medical treatment even when they are not paid more to do so.
The new approach, which proponents call “open access” hospice, is an example of the efforts by some insurers and health care providers to try to fix specific problems in the nation’s medical system even as politicians and businesses weigh sweeping health care overhaul proposals in Washington. Being able to have potentially life-prolonging medical treatment makes all the difference to hospice patients like Gary Marko, 42, who has advanced gastric cancer and is recovering from recent surgery for his condition.
“I probably would not have elected to go to hospice, if curative care wasn’t an option,” Mr. Marko said. He is considering taking chemotherapy even as he receives the kind of additional care available through a hospice program, like visits from a nurse and a massage therapist at his home in Covington, Wash. Both types of care will be paid for by the Aetna coverage he receives through his employer.
Dr. Rowe, whose medical specialty is caring for the elderly and is now a health policy professor at Columbia University, pushed Aetna to begin an experiment two years ago to pay for traditional medical care even while covering hospice services, usually at home, like nursing care or a home health aide.
Many doctors say the either-or approach, if it ever made sense, is less valid now that continued advances in medicine can allow even patients with very advanced disease to benefit from new treatments. “The whole dichotomy is entirely false,” said Dr. Ira R. Byock, the director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
There are many reasons people are slow to consider hospice care — not the least of which is acknowledging that they are dying.
But Dr. Byock rejects the notion that the only point of hospice is to help people die. He says that by offering nursing care and palliative medicine to relieve pain and improve the quality of life, hospice care can benefit some people so much that they become well enough to leave the programs. The Aetna experiment, for which nearly 400,000 of its roughly 15 million insured members are eligible, provides some evidence that people will take advantage of hospice care if they do not have to give up other treatment intended to prolong life.
Mr. Marko said that once he learned that Aetna would not ask him to forgo chemotherapy, there was no reason not to sign up for the hospice services that allowed him to be more comfortable at home with his wife, Amy, and their three young children. His massage therapy makes him feel better, for example, and he plans to try the acupuncture available through the program.
“What’s to lose?” Mr. Marko said.
What can be gained is more time to take advantage of hospice’s benefits. One woman in the Aetna experiment who had breast cancer was able to continue chemotherapy even as she enrolled in a hospice program that offered the nursing care she needed before she died.
“She just wasn’t ready to give up,” said Sharon Brodeur, a nurse and Aetna administrator who helped develop the experimental program. The patient probably entered the program two or three months earlier than she would have if she had had to give up chemotherapy, Ms. Brodeur said.
The Aetna initiative and other open-access programs are still the exceptions, though.
For example, Medicare which spent about $9 billion on hospice benefits last year out of its total spending of $406 billion, requires patients to give up regular medical coverage if they enter a hospice program.
Medicare officials say that patients can opt for hospice care and then change their mind, resuming traditional coverage. And they say that nothing in Medicare’s rules prevents hospice programs from providing a full range of medical treatments.
But many hospice programs do not offer advanced medical treatments because they say they cannot afford to. Medicare pays a provider about $130 a day for routine hospice care in the home, regardless of the patient’s individual condition. The agency, which introduced the benefit in the mid-1980’s, based its rules on the assumption that it would be too costly to pay for both hospice care and for treatments aimed at prolonging life.
Many experts, though, say that thinking is misguided because it causes patients to spend their last days in a hospital receiving expensive care they may not even want, or to frequently return to the hospital because managing their disease is too much for a family to handle.
“What they’re doing instead is paying for unnecessary emergency room visits,” said Dr. Diane E. Meier, a professor at Mount Sinai School of Medicine in New York and an expert in palliative care.
Medicare officials, though, cite the growing popularity of hospice programs as an indication that the benefit is valuable in its current form.
Hospice care has been allowed to “thrive and prosper,” said Laurence Wilson, the director of chronic care policy for the Center for Medicare Management. But he also emphasized that patients who still wanted aggressive medical treatment had the option of sticking with traditional Medicare coverage.
Hospice is “not all things to all people,” Mr. Wilson said.
Many people in the field say that Medicare’s fixed-payment system discourages some hospice programs from accepting patients who need expensive treatment.
“The perverse incentive is to take the cheapest patient,” said Carolyn Cassin, the chief executive of Continuum Hospice Care, who said such a patient would be someone who had already given up hope and required very little medical care. Continuum Hospice Care is part of the hospital system of the same name in New York and is among the small number of hospice programs that makes a point of taking even those patients who want sophisticated treatment.
Because Continuum Hospice cared for 2,700 patients last year, on a budget of about $42 million, the program is large enough to absorb the cost of some very expensive patients, Ms. Cassin said.
“You’re never going to have to choose between treatment for the disease and care from us,” she said, noting that about 40 percent of Continuum Hospice patients received advanced medical therapies.
When 76-year-old Charles Tirone, who had late-stage lung cancer, was discharged from the hospital late last year, for example, he was able to continue his radiation treatments and still enroll in Continuum’s hospice program. Social workers and nurses managed his care at his West 57th Street apartment in Manhattan, until his death on Tuesday evening.
The social worker assigned to Mr. Tirone “tried her best to make Charlie comfortable,” said Michael Abbassi, a longtime friend who helped care for him.
Many other hospice programs are exploring the Continuum-style of open access, accepting patients with insurance at the end of life who may want and need aggressive medical treatments.
“This has been a big movement and a big discussion over the last five years,” said Malene Davis, the chief executive of Capital Hospice in Falls Church, Va., which cared for about 5,100 patients last year.
Many hospice programs, though, are too small to spread their costs, which would allow them to take patients needing expensive treatments. And if they meet basic state and Medicare requirements that include offering access to a nurse and a doctor 24 hours a day, hospices can essentially pick and choose which treatments to offer as long as they are meeting a patient’s needs.
“There is a huge variation in what programs provide,” said Dr. Mark Leenay, the medical director of palliative initiatives at UnitedHealth, the big insurer.
Because Medicare does not collect detailed data about the medical treatments a hospice patient receives, there is very little information about what services are actually being provided. Some argue that Medicare should simply drop the requirement that patients forgo other coverage if they want hospice care.
As part of a much broader effort toward revamping health care, Senator Ron Wyden, Democrat of Oregon, has introduced legislation that would end that requirement. He says that the change would not significantly raise Medicare’s spending, but that it would give people more control over the way they die.
“People don’t want government making their choices,” he said.
One insurer, Blue Cross and Blue Shield of Rhode Island, which typically pays for treatments like chemotherapy as a way to relieve pain even while covering hospice care, says it has not seen a significant increase in the use of medical services because of this broader coverage.
At Dow Chemical, an employer in the Aetna experiment, the company’s executives agreed to pay for the broader coverage because “it’s the right thing to do,” said Steve Morgenstern, who manages Dow’s health plans.
Aetna plans to continue its experiment, which in its first year increased the average length of a hospice stay to 34 days, up from 27. The insurer’s chief medical officer, Dr. Troyen Brennan, predicts that the company will probably end up extending its coverage to more of its insured members.
“Looking at the preliminary data, everything suggests we should move forward,” he said.
Dr. Rowe, the former Aetna chairman, said insurers should not be in the business of forcing people to give up hope. “When I was in practice,” he said, “I wouldn’t do that to a patient.”
There Is Life After Hospice, and Even Golf in Florida for Some
By Reed Abelson : NY Times Article : February 10, 2007
Hospice does not have to mean an immediate death sentence — as the late humorist Art Buchwald demonstrated. Last year, much to his and others’ amazement, he survived for five months in a hospice program before being well enough to leave in July. It was not until last month that he died of kidney failure.
As Mr. Buchwald said that he did, some people find that supportive hospice care may actually lengthen their lives, and that the doctors’ predictions of imminent demise may simply be wrong.
Mitchell Zimble, for example, was discharged from the hospital into a hospice program last summer after his doctors concluded that he would die within a matter of weeks because of his liver cancer. He was not well enough to continue chemotherapy, and one of his doctors wanted to make sure he got the care he needed to be comfortable both in the hospital and later at home.
The doctor, Ira Byock, is a nationally recognized expert in palliative care, a specialty aimed at improving the quality of life for patients with serious illness.
Mr. Zimble — who is known as Mickey — enrolled in a hospice program near his home in rural Vermont. There he received a wide range of services like nursing care and physical therapy. With the physician at the hospice keeping a close eye on him, he began to get better. At one point, the doctor turned to him and said, “On paper you should be dead, but you look great,” Mr. Zimble’s wife, Sandy, recalled.
As soon as Mr. Zimble was strong enough to get chemotherapy, he was able to graduate from hospice. He turned 75 in September and felt well enough for the couple to go to Florida for the winter.
“He’s out there walking and playing nine holes of golf,” said Mrs. Zimble, who credits Dr. Byock for attending to her husband’s needs well enough for him to recover. Dr. Byock “kept him so comfortable that he did not have death on his mind,” she said.
Dr. Byock, who is the director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., says hospice should be viewed not as giving up all hope but about getting the care one needs. If the disease continues to progress, the patient is likely to die, he said. But patients may also be able to gain the weight and strength necessary to prolong their lives.
“We’re trying to change that trajectory,” said Dr. Byock. “We’re not ready to give up.”
Tough Question to Answer, Tough Answer to Hear
By Jane E. Brody : NY Times Article : March 6, 2007
Upon receiving a diagnosis of a fatal illness like metastatic cancer, Alzheimer's disease or congestive heart failure, many patients ask, “Doc, how much time have I got?” It’s a reasonable question, given that there is often much to plan for and accomplish before a progressive illness robs patients of their physical or mental abilities.
Yet prognosticating is one of the most challenging tasks doctors face. Unless patients are within days or weeks of dying, it is often impossible to provide an accurate prognosis. And studies have shown that when doctors do try to gauge a patient’s remaining life expectancy, more often than not they overestimate it. Out of fear, ignorance or concern for their patients’ emotional well-being, they tend to be overly optimistic.
“Accurately predicting life expectancy in terminally ill patients is challenging and imperfect,” a medical team wrote in the journal Mayo Clinic Proceedings in November 2005. “Physicians are typically optimistic in their estimates of patient survival.”
The team, from the Mayo Clinic, cited a study in which survival predictions were made for 468 patients in hospice programs, meaning they had stopped treatment to prolong their lives. Only 20 percent of the predictions were accurate; 63 percent were too optimistic.
In a second study, also among patients receiving hospice care, the median survival was 24 days, but the median survival estimate doctors offered patients was 90 days. In general, researchers have found that doctors tend to overestimate patient survival by a factor of three to five.
As one physician interviewed anonymously by The Journal of the American Medical Association put it, “When we prognosticate and it turns out that the patient lives a longer life, then we can be joyous with them, but when we prognosticate and the patient ends up living a far shorter time, that’s when we really do harm.”
The Value of Candor Patients use information about the expected course of their illness, including how long they are likely to survive, in a variety of ways. It can help them decide whether to take a long-awaited trip, which therapies are worth pursuing, what kind of support system they may need as their condition worsens, and how much time they will have to put their affairs in order.
Patients often have things they want to accomplish before they die, and knowing that their time is short may prompt them to attend to such matters. Receiving a terminal prognosis may also open up conversations about death and dying that may be painful at first but can bring considerable relief to patients and family members alike.
Doctors do best in providing accurate prognoses for patients with advanced cancer, because the disease follows a more predictable course and the medical literature provides a range of survival times for most cancers. For example, when my brother-in-law was found to have mesothelioma, an asbestos-related cancer, he was told he could expect to live 8 to 12 months. He used that time to get his financial and personal affairs in order, share meaningful goodbyes with his family and friends, and pass along a rich legacy of good music, memories and wisdom.
Difficult Choices Arlene Wysong, a New York businesswoman, was 65 years old, ostensibly very healthy and leading a rich, active and fulfilling life when she was surprised by a diagnosis of Stage 4 lung cancer. She said she had quit smoking 22 years earlier after being “a marginal smoker for about 20 years.”
“It was a total shock,” she said, “and I knew what it meant. It meant I had an incurable cancer. I asked for a prognosis. The doctor said 3 to 12 months.”
Ms. Wysong made a choice. Knowing she could not be cured, she chose “no chemotherapy, only palliative care” — treatment for pain and any other symptoms that might impede her ability to live out her last months as fully as possible.
“I didn’t want toxic chemo,” she said in an interview. “I didn’t want to lose my hair and be sick. I felt I had a very short time left, and I didn’t want to spend it being sick. So I rented a house in the country large enough for people to visit and stay overnight, and I enjoyed the summer.
“My goal was to make sure I saw all the friends and family I wanted to see and to spend quality time with them. I made out a new will and transferred my business, but I stayed involved with it for as long as I could.”
Ms. Wysong also used the time to work on serious issues that had caused a rift with her daughter, and they succeeded in restoring a loving relationship. She also outlived her doctor’s prognosis, and 16 months after learning of her cancer, she called in hospice care, remaining at home until she died last October with her family at her bedside.
Prognosis is helpful, not just for patients, but also for their families, who may need to know, for instance, how much time they may have to take off from work, whether they should arrange for an extended leave, what might be involved in caring for a dying person at home and whether other arrangements should be explored.
The Doctor’s Dilemma “Quite separate from the challenge of estimating survival accurately, physicians may also find the process of disclosing the prognosis to their patients difficult,” wrote Dr. Elizabeth B. Lamont and Dr. Nicholas A. Christakis in The Journal of the American Medical Association in July 2003.
In some cases, patients make it clear that they simply do not want to know.
More often, however, the family wants to keep difficult facts from the patient. A study in Ireland, for example, found that while 83 percent of patients wanted to be told the truth, only 55 percent of their relatives wanted the patient to be truthfully informed. The lesson here, the researchers concluded, is for doctors to ask patients, not family members, how much they want to know about their disease.
A common fear among doctors is that providing a terminal prognosis will strip patients of hope. Indeed, it will dash hopes of long-term survival. But the doctor can convey other sources of hope. For example, patients may be relieved to learn that they will remain well enough to attend an important family event, or that palliative care is available for distressing symptoms like pain, nausea and shortness of breath.
Most important, patients say, is for doctors to stay with them until the end. Fear of abandonment (some terminally ill patients are in fact abandoned by their doctors) is extremely common. Doctors see themselves as healers, trained to cure or ameliorate illness, and typically view the impending death of a patient as a personal failure. Rather than face failure, they abandon the patient.
Patients may be able to help themselves in this respect by reassuring the doctor. “I know you tried very hard and I appreciate all you did for me,” they might say. “It’s not your fault that I won’t survive this disease. It would help a lot, though, if you stay with me for the long haul.”
Understanding Hospice — An Underutilized Option for Life's Final Chapter
Gail Gazelle, M.D. : New England Journal of Medicine : July 26, 2007
It was Mr. G.'s third exacerbation of congestive heart failure in the past 6 months. Eighty-three years old, he had New York Heart Association class IV heart failure, end-stage coronary artery disease, and insulin-dependent diabetes. Although he had never wanted to be put on a ventilator, this time his shortness of breath was so terrifying that he felt he had no choice. After having a good response to diuresis, he was successfully extubated and transferred out of the coronary care unit.
Two days later, a hospitalist suggested to Mr. G. and his wife that given his advanced disease, he should consider going home and receiving hospice care there. Sensing the couple's fear,she reassured them that death was not imminent and that members of the hospice staff would work to ensure the best possible quality of life. Relieved, Mr. G. acknowledged that he would prefer to avoid rehospitalization.
Introduced in the United States as a grassroots movement more than 30 years ago and added as a Medicare entitlement in 1983, hospice care is now considered part of mainstream medicine,as evidenced by growing patient enrollment and Medicare expenditures. In 2005, more than 1.2 million Americans received hospice care, and between 2000 and 2004, the percentage of Medicare decedents that had been enrolled in hospice programs increased by almost 50%. But despite its increased use, many aspects of hospice care are still misunderstood by both physicians and patients.
For instance, many would not consider Mr. G. to be a candidate for hospice care. He did not have cancer, and his death was probably months, not days, away. The fact is, however, that slightly less than half of hospice patients have terminal cancer;nearly 40% of hospice admissions are for end-stage cardiac disease, end-stage dementia, debility, pulmonary disease, and stroke.1
Patients and clinicians may also not realize that hospice care at home is free. Medicare is the primary payer for hospice care in approximately 80% of cases, with care most often provided in the patient's home. Commercial insurers also provide hospice benefits, but the specifics of coverage vary. Under Medicare,most expenses related to the terminal diagnosis are paid infull, including all medication and equipment and all visits by hospice nurses and home health aides. (Expenses related to other diagnoses remain covered by the patient's primary insurance provider.) Other hallmark hospice services include intensive emotional and spiritual counseling, 24-hour crisis management,and bereavement support for at least 1 year after the patient's death.
Hospice care can successfully address the critical end-of-lifeconcerns that have been identified in numerous studies: dying with dignity, dying at home and without unnecessary pain, and reducing the burden placed on family caregivers. Evaluation studies reveal consistently high family satisfaction, with 98%of family members willing to recommend hospice care to others in need. And the extensive expertise of physicians specializing in hospice and palliative medicine was recognized in 2006, when the field was accredited as a fully independent medical subspecialty.
Despite these benefits and the general understanding by clinicians that at least 6 months of care are provided, the median length of hospice service is only 26 days, with one third of patients referred to hospice care during the last week of life.1 Factors contributing to late referral include application of a curative model to end-stage incurable illnesses; Medicare's per diem hospice reimbursement, which precludes costly, aggressive therapies;and the mistaken view that patients must have a do-not-resuscitate order.
However, the most important factors in delayed referrals appear to relate to physician attitudes. In its first position paper on the topic of cancer and dying, the American Society of Clinical Oncology acknowledged that many oncologists and other physicians regard the death of a patient as a professional failure. Many also fear that they will destroy their patients' hope, which physicians may believe lies only in efforts to increase the quantity rather than quality of life. Furthermore, physicians receive little training in the compassionate discussion of bad news. But perhaps the most critical factor is that physicians view hospice care as something reserved for the imminently dying instead of as a service designed to help people live as well as possible in the face of advanced incurable disease.
To determine eligibility, the attending physician and hospice medical director must certify that to the best of their judgment,the patient is more likely than not to die within 6 months.Responsibility for determining ongoing eligibility rests with the director. To assist physicians in prognosticating, Medicare provides broad guidelines for many medical conditions,but these guidelines do not represent hard-and-fast requirements.Coexisting conditions or a particularly rapid functional decline can outweigh strict adherence to written requirements.
After enrollment, a plan of care is developed in accordance with the needs and wishes of the patient and family, often tempered by the presence or absence of caregivers to participate in day-to-daycare. The primary goal is to ensure that pain and such symptoms as insomnia, dyspnea, depression, constipation, agitation, nausea,and emotional and spiritual distress are aggressively addressed. Most clinical care is provided by a hospice nurse, and the vast majority of patients are not seen by a physician. Mr. G.'s planof care included continuing high-dose furosemide, adding low-doselorazepam for the anxiety that typically accompanies shortnessof breath, and initiating low-dose liquid opioids, a mainstay in the management of dyspnea.
To address Mr. G.'s nonmedical needs, a home health aide provided assistance with personal hygiene and dressing for an hour eachday, 5 days a week. The hospice social worker offered to have a volunteer shop for groceries and provide companionship. The social worker also talked with the family and identified the need to address Mr. G.'s anxiety and his wife's fears about the future. Noting that Mr. G. had concerns about whether God was punishing him for past acts, she encouraged visits by the hospice chaplain.
Hospice emphasizes an interdisciplinary approach to care. Inmost cases, at least once every other week, the hospice team— nurses, social workers, a pastoral counselor, the bereavement coordinator, and the medical director — meet to discuss the needs of the patient and family. In the interim, nurses call attending physicians with their recommendations.
One serious challenge in hospice care is that attending physicians typically receive little to no training in the use of medications for pain and symptom management and thus rely on a presumed level of expertise on the part of the hospice nurse. Given the current nursing shortage, however, such an assumption of competency may or may not be well founded. Attending physicians should routinely evaluate recommendations and should have a low threshold for reviewing cases with the hospice medical director.
As a patient's disease progresses, the hospice plan shifts to accommodate decreasing independence, alterations in symptoms,and changing psychosocial needs. In Mr. G.'s case, the realization that his symptoms could be managed at home lessened his anxiety,which in turn decreased episodes of chest pain. Flash pulmonary edema occurred less frequently; during one such episode, he received intravenous furosemide in his home, since he wantedto avoid further hospitalizations. During 4 months of hospice care, Mr. G.'s condition gradually deteriorated, with increasing weakness, dyspnea, and cardiac cachexia. Near the end, his family and friends gathered, and he died peacefully with his wife andnurse at his side. Despite his family's grief, they expressed their appreciation that Mr. G. had maintained a reasonably high quality of life and had died in his home as he had wished.
With the growing number of baby boomers seeking more control over all aspects of their health care, the use of hospice care will probably continue to increase. It is especially important,therefore, that physicians become more familiar with what hospice care offers and work to overcome barriers in talking frankly with patients about what lies ahead.
Source Information
Dr. Gazelle is a member of the Division of General Medicine and Primary Care at Brigham and Women's Hospital and president of MD Can Help — both in Boston.
Letting Go of the Rope — Aggressive Treatment, Hospice Care, and Open Access
Alexi A. Wright, M.D., and Ingrid T. Katz, M.D., M.H.S. :New England Journal of Medicine : July 26, 2007
More Americans are choosing hospice for end-of-life care, but ironically, hospice patients increasingly are forced to give up effective palliative treatments along with aggressive medical intervention. For Joanne Doolin, a 64-year-old mother of three who spent her last 2 years of life fighting colon cancer that eventually made it impossible to eat, enrollment in hospice care involved a difficult trade-off: with only a few weeks left to live and her daughter's wedding approaching, Doolin was forced to choose between entering hospice care and continuing to receive total parenteral nutritional support.
Unfortunately, treatment options are often limited by the economic constraints of hospice care. The hospice that was the closest to Doolin's Boston-area home would accept only patients willing to forgo life-sustaining treatments, including chemotherapy and parenteral nutrition. It cares for only about 20 patients at a time with three nurses, a manager, a part-time chaplain,and a medical director who works there one morning a week. As a small program, it cannot negotiate pricing or spread the cost of expensive medications across many patients. A few large hospices offer what is called open-access care, which allows patients to add hospice care to their current medical treatment, but this option is not available in Massachusetts.
The Medicare hospice benefit reimburses hospices on a per diem basis, paying fixed inpatient and outpatient fees regardless of services provided. Despite adjustments for inflation, the fees have not kept up with the cost of cutting-edge palliative treatments. Many patients who meet the criterion for hospice care — having less than 6 months to live — still opt for palliation from oral chemotherapies, radiation, antiemetics,or blood transfusions. But these treatments can cost more than $10,000 per month — too much for most hospice programs.
Although some observers worry that nationwide open access could bankrupt Medicare, most agree that per diem reimbursement rates remain unacceptably low: in 2006, hospices were paid an average of $563 per patient per day for inpatient care (which represents 2.7% of Medicare's total hospice payments) The average outpatient fee was $126 for a typical day of care, an amount that must cover nursing care; contributions from social workers, chaplains, and volunteers; and all drugs and durable medical equipment, as well as 13 months of bereavement support.
Despite differences among hospice programs, patient and family satisfaction is high; in 2005, one third of the 2.4 million Americans who died were receiving hospice care. The largest proportion of patients had cancer, although patients with dementia,heart disease, and fatal lung conditions are increasingly entering hospice care. Diane Meier, director of the Center to Advance Palliative Care at the Mount Sinai School of Medicine in New York, argues that "palliative care and hospice are the only medical disciplines where nurses and physicians focus on the whole person."
Most patients, however, wait until the last few weeks of life to enroll. In 2005, the median hospice stay was 26 days. One contributing factor is late referrals by oncologists, who routinely overestimate patients' lifespans. Many patients are referred only when no other option remains.
In addition, many patients fear that they will not receive enoughmedical services in hospice care. "It felt like I was trading in the Lamborghini of medical care for an old pick-up truck driving down a rutted road," said one patient with cancer. Optima lend-of-life support often necessitates careful titration of opioid, antipsychotic, and anxiolytic drugs, which can sometimes require a doctor's presence. But few patients ever meet a physician after enrolling for hospice care; there are no rules mandating the degree of physician involvement. Medicare does not even collect information on the number, frequency, or duration of visits or on which personnel provide which aspects of care. Each hospice program decides what services to offer, and family members often must fill in the gaps.
Like most patients with terminal illness, Joanne Doolin chose ongoing medical treatment over hospice. She entered a bridge-to-hospice program that provided home nursing care and access to an infusion company for nutrition until she was ready for hospice care.She spent more than a month at home, visited her favorite casino,and attended her daughter's wedding. But then Doolin's health suddenly deteriorated, and she needed urgent medical care and pain management. Her family contacted the bridge program's hospice but could not enroll her in time. During Doolin's last few hours,care was provided by a haphazard mix of people, including her family, a covering oncologist, a pharmacist, and compassionate local firefighters. One year later, Doolin's family is still angry over the forced choice between parenteral nutrition and hospice care. They believe she would have suffered less in an open-access hospice program.
The disconnect between prehospice and hospice care seems absolute to physicians as well. The Medicare hospice benefit "is so restrictive,"says Thomas Smith, chair of the division of hematology–oncology and palliative care at Virginia Commonwealth University–Massey Cancer Center, in Richmond, "that it requires divorcing yourself from your patient's care because you can't be their cancer doctor anymore. As soon as you enroll in hospice, there goes your Aranesp, your Zometa, and your Zofran. . . . I can't do anything but adjust pain meds and hold hands. These are wonderful things to do, but they won't keep my office running." Many hospice directors counter that oncologists abandon their patients when they can no longer visit the office.
A few large hospices and insurance companies are trying to preventthese situations with open-access programs. Last year, Capital Hospice, based in Washington, D.C., paid for palliative chemotherapy,radiation, dialysis, blood transfusions, parenteral nutrition,antibiotics, and other expensive intravenous medications. Withan average daily census of 606 patients, the program can spreadout the expense. President and chief executive officer MaleneDavis likens open access to "two ropes hanging from the ceiling.We've asked people to hold on to the aggressive-treatment ropewith both hands," she says, "but when they go on hospice wetell them to let go completely. Open access gives people thechoice to let go of active treatment with one hand and grab on to the hospice rope until they feel comfortable letting the other hand go."
The large insurance company United Health offers a basic open-accesshospice benefit to nearly 26 million members and a smaller hospiceprogram in 11 cities that includes physician home visits and reviews of care. A company spokesperson says that the cost is negligible as compared with the cost of its other programs.In 2004, Aetna started its Compassionate Care Program, which uses International Classification of Diseases, Ninth Revision,codes and pharmaceutical information to identify members with terminal illnesses; the members are then contacted by nursecase managers, who offer emotional support, care coordination,and information about end-of-life planning and symptom relief.Early results suggest that members appreciate the additional support that tailored case management provides; more members are enrolling in hospice, and the program is reducing rates of unnecessary hospitalizations.
But these programs remain the exception. According to the Centerfor Medicare and Medicaid Services (CMS), only 2.5% of the country's4100 hospices have an average daily census above 400 —commonly considered the minimum requirement for open access. Elsewhere, patients and hospice directors must make tough choices.
The only randomized trial to date examining standard cancer care both with and without hospice support showed no significant difference in survival rates, but it did show significant improvements in quality of life when cancer care and hospice care were combined. Preliminary analysis revealed a 27% cost reduction in the combined-care group, which received less chemotherapy and diagnostic testing and required fewer hospitalizations.
Nevertheless, many experts worry that open access may be prohibitively expensive. A 1990 study showed that most patients with cancer would choose to undergo toxic chemotherapy despite marginal potential benefits; a study in 2004 reported increasingly aggressive care at the end of life. Patients with congestive heart failure also face difficult choices, since life-sustaining medications can cost $1,300 per day. "Whoever wrote [Medicare's hospice]policy has never taken care of sick patients," argues Diane Meier. "Our patients are fighting for their lives and will do anything to extend the length of time they live, as long asthey have some quality of life."
CMS foresees an annual increase of 9% in hospice spending over the next decade, which will outpace increases for hospitals,physicians, skilled nursing facilities, and home health services. Many expect closer scrutiny of hospice reimbursements by Medicare,particularly for patients with dementia or other illnesses,who often live with the disease for more than 6 months. "Baby boomers are going to want everything — from death coaches to powerful drugs," says Davis, "but we've got to begin grappling with tough choices if we're going to stay in business for $150a day."
Some choices will undoubtedly involve better definitions of palliative treatment. Currently, oncologists focus on how wella tumor responds to chemotherapy, but they will soon have to examine improvement of symptoms and quality of life to justify treatment costs. Meanwhile, patients will simply have to hope for access to a hospice that is large enough to help them.
Source Information
Dr. Wright is a fellow in hematology–oncology at the Dana–Farber Cancer Institute, and Dr. Katz is a fellow in infectious disease at the Beth Israel Deaconess Medical Center — both in Boston.
Between Comfort and Care, a Blurry Line
By Sandeep Jauhar, M.D. : NY Times Article : September 18, 2007
As a heart failure specialist, I often take care of patients near the end of their lives. I am sometimes asked to predict how long someone is going to live. On rare occasions, I have even been asked to assist in someone’s death.
I once took care of an 84-year-old woman with end-stage heart failure who told me she couldn’t bear feeling short of breath and pleaded with me to help her die. “Is Nov. 15 a good day for you?” she asked.
I explained that I could not assist in her death, though I could give her morphine to relieve her suffering.
“If you were like me, you’d say the same thing,” she said ruefully. “I’m half gone. Nobody wants to bother with you when you’re like this.”
With her permission and her family’s, she was enrolled in a hospice program. But she never made it out of the hospital.
I recently cared for a man in his late 30s whose heart failure, a result of severe coronary disease, had progressed to the point where his kidneys had nearly stopped working. Michael spent most of his days sitting in a chair, head resting on his palm, unable to complete a sentence because of shortness of breath. Intravenous drugs dripped into catheters in his arms, which were so waterlogged that a hospital ID band dug a deep furrow into his wrist.
Because of inadequate social and family support, Michael had been deemed ineligible for a heart transplant or an artificial assist device. Given the dearth of available organs, cardiologists feared that if he didn’t take his medications properly and rejected a donor heart, the result would be two deaths, not one.
Michael wanted to live out his remaining days at home with his family. He understood that his condition was terminal and that the end was near. So we discharged him from the hospital.
It is always difficult to see a patient die, especially one as young as Michael. We doctors are not trained for it. Once, as a resident, I took care of an elderly man with drug-resistant leukemia and fungal pneumonia. When death was imminent, his son tried to put restrictions on blood draws. “I know my father, and he did not want to live this way,” he said. “The one thing he always prayed for was that he would go in his sleep.”
But we quickly discovered that it was almost impossible not to draw blood from a cancer patient. Some reason or another always came up. Eventually his family instructed us to provide “comfort care,” which meant no needle sticks and a steady infusion of morphine. For a while, his condition seemed to improve. My first instinct was to turn off the morphine drip, but the attending physician, more experienced in these matters, dialed it up even further. I was afraid he might stop breathing, but of course that was the whole point. It is called the law of double effect. It was O.K. for us to hasten his death in the service of treating pain and discomfort.
One evening just before leaving the hospital I received a phone call from Michael’s visiting nurse. He told me that Michael’s blood pressure was dangerously low and that his complexion was pallid, even a bit blue. Hospice care was supposed to have been set up, but the hospice nurse had not yet come to the house. So what did I want to do, the nurse wanted to know. He said he did not feel comfortable providing narcotics to relieve Michael’s discomfort. I wasn’t sure what to do, so I told him to send Michael to the emergency room.
In the United States, patients with terminal illnesses often spend a large part of the end of their lives in the hospital. In Newark, for example, a dying patient spends an average of three weeks in the hospital before death. At the institution where I trained in Manhattan, patients spend nearly 30 days of the last six months of their lives in the hospital. Nearly every doctor I’ve talked to recognizes that this wastes precious resources and prolongs suffering. But they — I — have not been taught a different way.
In the hospital, Michael’s condition was stabilized with powerful medications. Once again, hospice care was put in place and he was discharged home.
A few days later I got a call at 6:45 in the morning from the microbiology lab telling me that blood cultures, drawn while Michael was in the E.R., were positive for a particularly virulent bacteria. Did I want to prescribe antibiotics to treat the underlying infection? Or simply tell the hospice nurse to alleviate any fevers with Tylenol and ice packs?
I called the nurse and explained the situation. “We do give antibiotics,” she assured me. “Sometimes we view it as a comfort measure, and sometimes people want everything done.”
“You still accept patients into hospice if they want everything done?” I asked.
“Well, it usually doesn’t start off like that,” she said, “but sometimes the nearer some people get to death, the more desperate they get. We try to discourage some things, but in the end you have to decide on a case-by-case basis.”
So, after consulting with Michael and his family, I ended up ordering an IV antibiotic. But then an infectious-disease specialist told me it wasn’t safe to administer the drug without drawing blood for certain tests — an electrolyte panel, a complete blood count and a drug level — at least once a week. At first I resisted. Wasn’t this something to be avoided? But in the end I acquiesced, convincing myself that giving the drug without proper monitoring might lead to greater discomfort.
A couple of days later the nurse called to tell me that the antibiotic was causing Michael to develop chest pain. The infectious-diseases doctor suggested another antibiotic, nearly $150 a dose. A couple of days later I got a call from a hospice physician rebuking me for using such an exorbitant drug when Michael only had a few weeks to live anyway. She said I might have to decide between the antibiotic and hospice care. So I stopped the drug.
Doctors need better training in how to help patients end their lives with dignity. The trend is in the right direction. The number of hospitals offering palliative medicine has nearly doubled since 2000, growing to 1,240 programs. Today, pain, nausea and shortness of breath are properly recognized as scourges of the terminally ill, and are aggressively treated. But the medical profession still has a long way to go.
Michael was readmitted to the hospital once more before he died. His family decided they did not want him to die at home, so they sent him back to the E.R. Eventually, he was discharged to a hospice facility, where he died a week later.
Managing end-of-life care, I have learned, is never straightforward. When I think of how Michael died, I remember what an elderly woman with terminal heart disease once told me in the hospital. “My husband said the hardest thing to do is to die; I always thought it would be easy.”
Sandeep Jauhar is the author of a memoir, “Intern: A Doctor’s Initiation,” to be published in January by Farrar, Straus & Giroux.
A Final Farewell - The Randy Pausch Story
By Jeffrey Zaslow : WSJ Article : May 3, 2008
Saying goodbye. It's a part of the human experience that we encounter every day, sometimes nonchalantly, sometimes with great emotion.
Then, eventually, the time comes for the final goodbye. When death is near, how do we phrase our words? How do we show our love?
Dr. Randy Pausch, a 47-year-old college professor at Pittsburgh's Carnegie Mellon University, has become famous for the way in which he chose to say goodbye to his students and colleagues. His final lecture to them, delivered last September, turned into a phenomenon, viewed by millions on the Internet.
Dying of pancreatic cancer, he showed a love of life and an approach to death that people have found inspiring. For many of us, his lecture has become a reminder that our own futures are similarly -- if not as drastically -- brief. His fate is ours, sped up.
Since the lecture, I've been privileged to spend a great deal of time with Randy, while co-writing his new book, "The Last Lecture." I've seen how, in some ways, he is peacefully reconciled to his fate, and in other ways, understandably, he is struggling.
The lecture was directed at his "work family," a call to them to go on without him and do great things. But since the talk, Randy has been most focused on his actual family -- his wife, Jai, and their three children, ages 6, 3, and 1.
For months after receiving his terminal diagnosis last August, Randy and Jai (pronounced "Jay") didn't tell the kids he was dying. They were advised to wait until Randy was more symptomatic. "I still look pretty healthy," he told me in December, "and so my kids remain unaware that in my every encounter with them I'm saying goodbye. There's this sense of urgency that I try not to let them pick up on."
Through both his lecture and his life, Randy offers a realistic road map to the final farewell. His approach -- pragmatic, heartfelt, sometimes quirky, often joyous -- can't help but leave you wondering: "How will I say goodbye?"
* * *
See related videos at Wall Street Journal videos, randypausch.com and thelastlecture.com.
Maybe 150. That's how many people Randy expected would attend his last lecture. He bet a friend $50 that he'd never fill the 400-seat auditorium. After all, it was a warm September day. He assumed people would have better things to do than listen to a dying computer-science professor in his 40s give his final lesson.
Randy lost his bet. The room was packed. He was thrilled by the turnout, and determined to deliver a talk that offered all he had in him.
He arrived on stage to a standing ovation, but motioned to the audience to sit down. "Make me earn it," he said.
He hardly mentioned his cancer. Instead, he took everyone on a rollicking journey through the lessons of his life. He talked about the importance of childhood dreams, and the fortitude needed to overcome setbacks. ("Brick walls are there for a reason. They let us prove how badly we want things.") He encouraged his audience to be patient with others. ("Wait long enough, and people will surprise and impress you.") And, to show the crowd that he wasn't ready to climb into his deathbed, he dropped to the floor and did push-ups.
His colleagues and students sat there, buoyed by his words and startled by how the rush of one man's passion could leave them feeling so introspective and emotionally spent -- all at once saddened and exhilarated.
In 70 minutes onstage, he gave his audience reasons to reconsider their own ambitions, and to find new ways to look at other people's flaws and talents. He celebrated mentors and protégés with an open heart. And through a few simple gestures -- including a birthday cake for his wife -- he showed everyone the depth of his love for his family. In his smiling delivery, he was so full of life that it was almost impossible to reconcile the fact that he was near death -- that this performance was his goodbye.
I'm a columnist for The Wall Street Journal, and a week before Randy gave the lecture, I got a heads-up about it from the Journal's Pittsburgh bureau chief. Because my column focuses on life transitions, she thought Randy might be fodder for a story.
I was aware that professors are often asked to give "last lectures" as an academic exercise, imagining what wisdom they would impart if it was their final chance. In Randy's case, of course, his talk would not be hypothetical.
I first spoke to him by phone the day before his talk, and he was so engaging that I was curious to see what he'd be like onstage. I was slightly ill at ease in our conversation; it's hard to know what to say to a dying man. But Randy found ways to lighten things up. He was driving his car, talking to me on his cellphone. I didn't want him to get in an accident, so I suggested we reconnect when he got to a land line. He laughed. "Hey, if I die in a car crash, what difference would it make?"
I almost didn't go to Pittsburgh to see him. The plane fare from my home in Detroit was a hefty $850, and my editors said that if I wanted, I could just do a phone interview with him after the talk, asking him how it went. In the end, I sensed that I shouldn't miss seeing his lecture in person, and so I drove the 300 miles to Pittsburgh.
Like others in the room that day, I knew I was seeing something extraordinary. I hoped I could put together a compelling story, but I had no expectations beyond that.
Neither did Randy. When the lecture ended, his only plan was to quietly spend whatever time he had left with Jai and the kids. He never imagined the whirlwind that would envelop him.
The lecture had been videotaped -- WSJ.com posted highlights -- and footage began spreading across thousands of Web sites. (The full talk can now be seen at thelastlecture.com.) Randy was soon receiving emails from all over the world.
People wrote about how his lecture had inspired them to spend more time with loved ones, to quit pitying themselves, or even to shake off suicidal urges. Terminally ill people said the lecture had persuaded them to embrace their own goodbyes, and as Randy said, "to keep having fun every day I have left, because there's no other way to play it."
In the weeks after the talk, people translated the lecture into other languages, and posted their versions online. A university in India held a screening of the video. Hundreds of students attended and told their friends how powerful it was; hundreds more demanded a second screening a week later.
In the U.S., Randy reprised part of his talk on "The Oprah Winfrey Show." ABC News would later name him one of its three "Persons of the Year." Thousands of bloggers wrote essays celebrating him.
Randy was overwhelmed and moved by the response. Still, he retained his sense of humor. "There's a limit to how many times you can read how great you are and what an inspiration you are," he said. "But I'm not there yet."
Years ago, Jai had suggested that Randy compile his advice into a book for her and the kids. She wanted to call it "The Manual." Now, in the wake of the lecture, others were also telling Randy that he had a book in him.
He resisted at first. Yes, there were things he felt an urge to express. But given his prognosis, he wanted to spend his limited time with his family.
Then he caught a break. Palliative chemotherapy stalled the growth of his tumors. "This will be the first book to ever list the drug Gemcitabine on the acknowledgments page," he joked. But he still didn't want the book to get in the way of his last months with his kids. So he came up with a plan.
Because exercise was crucial to his health, he would ride his bicycle around his neighborhood for an hour each day. This was time he couldn't be with his kids, anyway. He and I agreed that he would wear a cellphone headset on these rides, and we'd talk about everything on his mind -- the lecture, his life, his dreams for his family.
Every day, as soon as his bike ride came to an end, so did our conversation. "Gotta go!" he'd say, and I knew he felt an aching urge (and responsibility) to return to his family life.
But the next day, he'd be back on the bike, enthusiastic about the conversation. He confided in me that since his diagnosis, he had found himself feeling saddest when he was alone, driving his car or riding his bike. So I sensed that he enjoyed my company in his ears as he pedaled.
Randy had a way of framing human experiences in his own distinctive way, mixing humor here, unexpected inspiration there, and wrapping it all in an uncommon optimism. In the three months after the lecture, he went on 53 long bike rides, and the stories he told became not just his book, but also part of his process of saying goodbye.
* * * Right now, Randy's children -- Dylan, Logan and Chloe -- are too young to understand all the things he yearns to share with them. "I want the kids to know what I've always believed in," he told me, "and all the ways in which I've come to love them."
Those who die at older ages, after their children have grown to adulthood, can find comfort in the fact that they've been a presence in their offspring's lives. "When I cry in the shower," Randy said, "I'm not usually thinking, 'I won't get to see the kids do this' or 'I won't get to see them do that.' I'm thinking about the kids not having a father. I'm focused more on what they're going to lose than on what I'm going to lose. Yes, a percentage of my sadness is, 'I won't, I won't, I won't.' But a bigger part of me grieves for them. I keep thinking, 'They won't, they won't, they won't.' "
Early on, he had vowed to do the logistical things necessary to ease his family's path into a life without him. His minister helped him think beyond estate planning and funeral arrangements. "You have life insurance, right?" the minister asked.
"Yes, it's all in place," Randy told him.
"Well, you also need emotional insurance," the minister explained. The premiums for that insurance would be paid for with Randy's time, not his money. The minister suggested that Randy spend hours making videotapes of himself with the kids. Years from now, they will be able to see how easily they touched each other and laughed together.
Knowing his kids' memories of him could be fuzzy, Randy has been doing things with them that he hopes they'll find unforgettable. For instance, he and Dylan, 6, went on a minivacation to swim with dolphins. "A kid swims with dolphins, he doesn't easily forget it," Randy said. "We took lots of photos." Randy took Logan, 3, to Disney World to meet his hero, Mickey Mouse. "I'd met him, so I could make the introduction."
Randy also made a point of talking to people who lost parents when they were very young. They told him they found it consoling to learn about how much their mothers and fathers loved them. The more they knew, the more they could still feel that love. To that end, Randy built separate lists of his memories of each child. He also has written down his advice for them, things like: "If I could only give three words of advice, they would be, 'Tell the truth.' If I got three more words, I'd add, 'All the time.' "
The advice he's leaving for Chloe includes this: "When men are romantically interested in you, it's really simple. Just ignore everything they say and only pay attention to what they do." Chloe, not yet 2 years old, may end up having no memory of her father. "But I want her to grow up knowing," Randy said, "that I was the first man ever to fall in love with her."
* * * Saying goodbye to a spouse requires more than just loving words. There are details that must be addressed.
Shortly after his terminal diagnosis, Randy and his family moved from Pittsburgh to southeastern Virginia, so that after he dies, Jai and the kids will be closer to her family for support. At first, Jai didn't even want Randy returning to Pittsburgh to give his last lecture; she thought he should be home, unpacking boxes or interacting with the kids. "Call me selfish," Jai told him, "but I want all of you. Any time you'll spend working on this lecture is lost time, because it's time away from the kids and from me."
Jai finally relented when Randy explained how much he yearned to give one last talk. "An injured lion still wants to roar," he told her.
In the months after the talk, while chemo was still keeping his tumors from growing, Randy wouldn't use the word "lucky" to describe his situation. Still, he said, "a part of me does feel fortunate that I didn't get hit by the proverbial bus." Cancer had given him the time to have vital conversations with Jai that wouldn't be possible if his fate were a heart attack or car accident.
What did they talk about?
For starters, they both tried to remember that flight attendants offer terrific caregiving advice: "Put on your own oxygen mask before assisting others."
"Jai is such a giver that she often forgets to take care of herself," Randy said. "When we become physically or emotionally run down, we can't help anybody else, least of all small children." Randy has reminded Jai that, once he's gone, she should give herself permission to make herself a priority.
Randy and Jai also talked about the fact that she will make mistakes in the years ahead, and she shouldn't attribute them all to the fact that she'll be raising the kids herself. "Mistakes are part of the process of parenting," Randy told her. "If I were able to live, we'd be making those mistakes together."
In some ways, the couple found it helpful to try to live together as if their marriage had decades to go. "We discuss, we get frustrated, we get mad, we make up," Randy said.
At the same time, given Randy's prognosis, Jai has been trying to let little stuff slide. Randy can be messy, with clothes everywhere. "Obviously, I ought to be neater," Randy said. "I owe Jai many apologies. But do we really want to spend our last months together arguing that I haven't hung up my khakis? We do not. So now Jai kicks my clothes in a corner and moves on."
A friend suggested to Jai that she keep a daily journal. She writes in there things that get on her nerves about Randy. He can be cocky, dismissive, a know-it-all. "Randy didn't put his plate in the dishwasher tonight," she wrote one night. "He just left it there on the table and went to his computer." She knew he was preoccupied, heading to the Internet to research medical treatments. Still, the dish bothered her. She wrote about it, felt better, and they didn't need to argue over it.
There are days when Jai tells Randy things, and there's little he can say in response. She has said to him: "I can't imagine rolling over in bed and you're not there." And: "I can't picture myself taking the kids on vacation and you not being with us."
Randy and Jai have gone to a therapist who specializes in counseling couples in which one spouse is terminally ill. That's been helpful. But they've still struggled. They've cried together in bed at 3 a.m., fallen back asleep, woken up at 4 a.m. and cried some more. "We've gotten through in part by focusing on the tasks at hand," Randy said. "We can't fall to pieces. We've got to get some sleep because one of us has to get up in the morning and give the kids breakfast. That person, for the record, is almost always Jai."
For Randy, part of saying goodbye is trying to remain optimistic. After his diagnosis, Randy's doctor gave him advice: "It's important to behave as if you're going to be around awhile." Randy was already way ahead of him: "Doc, I just bought a new convertible and got a vasectomy. What more do you want from me?"
In December, Randy went on a short scuba-diving vacation with three close friends. The men were all aware of the subtext; they were banding together to give Randy a farewell weekend. Still, they successfully avoided any emotional "I love you, man" dialogue related to Randy's cancer. Instead, they reminisced, horsed around and made fun of each other. (Actually, it was mostly the other guys making fun of Randy for the "St. Randy of Pittsburgh" reputation he had gotten since his lecture.) Nothing was off-limits. When Randy put on sunscreen, his friend Steve Seabolt said, "Afraid of skin cancer, Randy? That's like putting good money after bad."
Randy loved that weekend. As he later explained it: "I am maintaining my clear-eyed sense of the inevitable. I'm living like I'm dying. But at the same time, I'm very much living like I'm still living."
Since Randy's lecture began spreading on the Internet, he has heard from thousands of strangers, many offering advice on how they dealt with final goodbyes.
A woman who lost her husband to pancreatic cancer said his last speech was to a small audience: her, his children, parents and siblings. He thanked them for their guidance and love, and reminisced about places they had gone together. Another woman, whose husband died of a brain tumor, suggested that Randy talk to Jai about how she'll need to reassure their kids, as they get older, that they will have a normal life. "There will be graduations, marriages, children of their own. When a parent dies at such an early age, some children think that other normal life-cycle events may not happen for them, either."
Randy was moved by comments such as the one he received from a man with serious heart problems. The man wrote to tell Randy about Krishnamurti, a spiritual leader in India who died in 1986. Krishnamurti was once asked what was the most appropriate way to say goodbye to a man who was about to die. He answered: "Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone." In his email to Randy, this man was reassuring: "I know you are not alone."
* * * The chemotherapy keeping Randy alive took a toll on his body. By March, he was fighting off kidney and heart failure, along with debilitating fatigue. Still, he kept a commitment to go to Washington, D.C., to speak before Congress on behalf of the Pancreatic Cancer Action Network.
He spoke forcefully about research needed to fight pancreatic cancer, the deadliest of all the cancers, and then held up a large photo of Jai and the kids. When he pointed to Jai, he told the congressmen: "This is my widow. That's not a grammatical construction you get to use every day.... Pancreatic cancer can be beat, but it will take more courage and funding."
Randy has now stopped chemotherapy, and as he regains his strength, he hopes to begin liver-specific treatments. He is engaged in the process, but expects no miracles. He knows his road is short.
Meanwhile, I feel forever changed by my time with Randy; I saw his love of life from a front-row seat. He and I traded countless emails, and I've filed them all safely in my computer. His daily emails -- smart, funny, wise -- have brightened my inbox. I dread the day I will no longer hear from him.
Randy rarely got emotional in all his hours with me. He was brave, talking about death like a scientist. In fact, until we got to discussing what should be in the book's last chapter, he never choked up.
The last chapter, we decided, would be about the last moments of his lecture -- how he felt, what he said. He thought hard about that, and then described for me how his emotions swelled as he took a breath and prepared to deliver his closing lines. It was tough, he said, "because the end of the talk had to be a distillation of how I felt about the end of my life."
In the same way, discussing the end of the book was emotional for him. I could hear his voice cracking as we spoke. Left unsaid was the fact that this part of our journey together was ending. He no longer needed to ride his bike, wearing that headset, while I sat at my computer, tapping away, his voice in my ears. Within weeks, he had no energy to exercise.
Randy is thrilled that so many people are finding his lecture beneficial, and he hopes the book also will be a meaningful legacy for him. Still, all along, he kept reminding me that he was reaching into his heart, offering his life lessons, mostly to address an audience of three. "I'm attempting to put myself in a bottle that will one day wash up on the beach for my children," he said.
And so despite all his goodbyes, he has found solace in the idea that he'll remain a presence. "Kids, more than anything else, need to know their parents love them," he said. "Their parents don't have to be alive for that to happen."
In Cancer Therapy, There Is a Time to Treat and a Time to Let Go
By Jane E. Brody : NY Times Article : August 19, 2008
Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancerradiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Tough Decisions
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.
The Hospice and Palliative Care Federation of Massachusetts contains a complete and current listing of hospices within the state.
Call (800)-962-2973 or (781)-255-7077 or check their website at http://www.hospicefed.org
We use
CareGroup Parmenter Home Care
@
One Arsenal Marketplace
Watertown, MA 02472
Tel: 617-673-1700
Fax: 617-673-1750
www.caregroupparmenter.org
- Patients and their families benefit more from hospice care if they enroll early enough to develop relationships with the hospice team and can prepare for end-of-life needs.
- Choosing hospice care does not preclude a patient from keeping a physician, choosing treatments, or withdrawing from hospice care and reinstating hospice benefits at a later time.
- Remember you are not "giving up" if you take advantage of these services early. They do a great job of transitioning patients and their families. Don't be fearful of this organization.
- Most hospice patients remain in their own homes.
- To help people make sound health care decisions and get the care they would want for themselves or their family members as life draws to a close, the National Institute on Aging has produced a comprehensive 68-page booklet, “End-of-Life: Helping With Comfort and Care.” Individual free copies can be obtained through the institute’s Web site, www.nia.nih.gov, or by calling 800-222-2225.
Avoiding the Call to Hospice
By Paula Span : NY Times Article : May 26, 2009
What if I told you about an organization you could call when your elderly parent became so seriously ill that it appeared unlikely she’d recover?
What if I told you that this organization would send well trained nurses to see your parent, aides to lend a hand with daily care, a social worker to help the family grapple with the emotional difficulties? That these folks would deliver equipment you might need — a hospital bed, say, or wheelchair — and all your parent’s drugs? What if they’d also send a chaplain if you wanted one? And provide a nurse to call 24/7 when you had questions or problems? And volunteers who would stay with your parent while you took a few hours’ break, even if just for a long, quiet walk?
And what if I told you all this would cost you nothing, that Medicare would pay for it all? You’d pick up the phone, right? It’s what caregivers so often yearn for and so seldom can locate: expertise, compassion, help that they can afford.
Now, what if I told you this organization was a hospice?
You might still call — the proportion of American deaths involving hospice care is climbing steadily. In 1998, when my mother was a hospice patient, the figure was only 18 percent;
But even if you did call, odds are you’d have waited so long that the hospice team would have very little time to do what it’s good at doing — providing care and comfort to the dying and their families. My mother, diagnosed with uterine cancer, was in hospice care for three months, thankfully. Overall, though, the median length of stay in hospice is just 20 days, and almost a third of patients enroll a week or less before they die.
Yet in surveys after patients’ deaths, more than 98 percent of family members say they would recommend hospice to others.
Why do people wait so long to call? Why let what’s invariably a wrenching time be even harder than it has to be?
Sometimes, simple misconceptions are to blame. People may think of hospice as a place rather than a service that aims to let people die in their homes. (A few hospices also operate residences.) Or they think hospice is for cancer patients, though in fact the majority of those in hospice have other terminal illnesses.
Doctors may neglect to mention hospice care, or even discourage it. (Maybe you’ve heard the grim joke: Why are coffins nailed shut? To keep doctors from administering more chemotherapy.)
A study released by a Harvard Medical School team found that about half of patients with metastasized lung cancer, the leading cancer killer, didn’t discuss hospice care with their doctors within four to seven months of diagnosis. Yet the average post-diagnosis survival for metastatic lung cancer is just four to eight months.
Sometimes, though, it’s families who don’t want to hear the word hospice. They think it’s giving in, relinquishing hope.
“Nobody wants to say yes to death,” said Don Schumacher, president of the National Hospice and Palliative Care Organization. “America is a death-denying society, much more than others. And the health care system wants to continue to treat and treat and treat.”
So even if your physician will sign the form saying that in her best judgment, death is likely to occur within six months if the disease follows its normal course — and that’s all that’s needed to enroll in hospice — often it’s the children who can’t bear to acknowledge that a father probably won’t rebound this time, that a mother is dying.
So families wait. And the parent dies anyway — maybe in pain that could have been eased, maybe with fears that could have been assuaged or lessened had hospice workers been able to offer more than brief crisis management.
How much hospice care is optimal? Mr. Schumacher thinks three months. Regina Bodnar, director of clinical services at Gilchrist Hospice Care in Baltimore, would prefer six months. But the median stay for a patient in her hospice last year was just 16 days. By the time hospice workers gets a call, said Ms. Bodnar, “the patient and family have been going it alone for weeks and months.”
“They deserve much more attention and assistance,” she added.
It’s a pity, isn’t it? Eleven years later, I still remember my mother’s aide Terry, who sewed a small doughnut-like pillow to prevent pressure sores from developing on Mom’s ear as she spent more time in bed. I wouldn’t ever have thought of that, but I wasn’t a specialist in end-of-life care. I was just glad we’d reached out to people who were.
Paula Span is the author of “When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions,” to be published next month by Grand Central Publishing.
Most cancer doctors avoid saying it's the end
By Marilyn Marchione : AP Medical Writer : June 15, 2008
One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived.
He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.
"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list" — things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home.
Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.
New research shows they are wrong.
Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.
Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.
Convinced of such benefits and that patients have a right to know, the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate.
Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks.
"That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.
Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.
"Boiled down, it's 'Talking about dying will kill you,'" she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."
The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston.
It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.
Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated.
About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.
That rings true, said Marshall, who is Mulligan's doctor at Georgetown University's Lombardi Comprehensive Cancer Center. Patients often are relieved, and can plan for a "good death" and make decisions, such as do-not-resuscitate orders.
"It's sad, and it's not good news, but you can see the tension begin to fall" as soon as the patient and the family come to grips with a situation they may have suspected but were afraid to bring up, he said.
From an ethics point of view, "it's easy — patients ought to know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer Center in Seattle. "Talking about prognosis is where the rubber meets the road. It's a make-or-break moment — you earn that trust or you blow it," he told doctors at a training session at the cancer conference on how to break bad news.
People react differently, though, said Dr. James Vredenburgh, a brain tumor specialist at Duke University.
"There are patients who want to talk about death and dying when I first meet them, before I ever treat them. There's other people who never will talk about it," he said.
"Most patients know in their heart" that the situation is grim, "but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it," he said.
Sometimes it's doctors who have trouble accepting that the end is near, or think they've failed the patient unless they keep trying to beat the disease, said Dr. Otis Brawley, chief medical officer at the American Cancer Society.
"I had seven patients die in one week once," Brawley said. "I actually had some personal regrets in some patients where I did not stop treatment and in retrospect, I think I should have."
James Rogers, 67 of Durham, N.C., wants no such regrets. Diagnosed with advanced lung cancer last October, he had only one question for the doctor who recommended treatment.
"I said 'Can you get rid of it?' She said 'no,'" and he decided to simply enjoy his final days with the help of the hospice staff at Duke.
"I like being told what my health condition is. I don't like beating around the bush," he said. "We all have to die. I've had a very good life. Death is not something that was fearful to me."
Hospice Care Sought Far Too Late
By Alice Dembner : Boston Globe : September 14, 2004
Patients with terminal illnesses are seeking hospice care far too late to get the full benefits of in-home nursing, counseling, and pain control that can provide a comfortable death, according to doctors and hospice providers.
More than one-third of US hospice patients die within a week of enrolling, according to the National Hospice and Palliative Care Organization. The delay results most often from patients' unwillingness to give up on a cure, as last-ditch treatments for cancer and other terminal diseases become more available and tolerable. Traditional hospice programs require that patients forgo life-extending treatment; in addition, because of tight funding, some programs will not accept patients getting expensive treatments.
To reach more patients, hospices are providing more medical treatment, and other programs are forming that offer some hospice-style support while patients continue life-extending medical treatment.
''More hospices are moving beyond the days of giving morphine and holding hands," said D. Rigney Cunningham, executive director of the Hospice and Palliative Care Federation of Massachusetts. ''We're trying to take care of more patients with more complicated treatments."
Nationally, hospice use is growing, reaching 950,000 people in 2003. But the median length of time in hospice care declined from about a month in 1995 to three weeks in 2001, according to the national hospice organization. In Massachusetts, Cunningham said, the median is just 16 days.
The national number rebounded slightly in the past two years, which hospice specialists said may reflect the agencies' efforts to change.
Patients and their families get the most from hospice if they enroll months, not weeks, before death, many end-of-life specialists believe.
But many new treatments have fewer side effects than older drugs and can be taken at home. That is reinforcing a common longstanding reluctance to accept that death is imminent, doctors said, and encouraging more patients to pursue treatment longer before seeking hospice care.
In addition, some of the same treatments that can extend life also are effective for easing pain in dying patients, blurring the lines between cure and comfort care. As a result, some doctors delay referring patients to hospice in the belief that hospices will not cover these treatments, even if they are used solely to relieve discomfort.
''It's a big problem," said Dr. Jennifer Temel, a thoracic oncologist at Massachusetts General Hospital who researches the importance of symptom management in patients' quality of life.
Temel said she has delayed referring patients to hospice at least 10 times this year so that patients could try Iressa, an oral chemotherapy drug that shrinks tumors in about 10 percent of patients with advanced lung cancer who have not responded to other treatments. One patient saw a dramatic turnaround, but most do not, and would benefit from simultaneous hospice care, she said.
Boyd Arnold was one of her patients who delayed enrolling in hospice care. In July 2003, Arnold was diagnosed with lung cancer that had spread to his brain, bones, stomach, and lymph nodes. The grim prognosis -- three to six months -- qualified him for hospice, which is typically restricted to those with six months or less to live. But Arnold hoped ''to be in the 2 percent who survived the disease," said his wife, Jackie. Together for five years, they hurriedly married on the day he got the bad news.
Boyd got radiation and standard chemotherapy, but that did not stop the cancer's march, Jackie said. So he turned to experimental chemotherapy. That shrank the brain tumor and stabilized the tumors in his lungs, allowing him to surpass the expected six months. But then the drugs began to cause complications. At 11 months, he learned the cancer had crept into his liver.
Temel, his doctor, suggested hospice, but the couple were not willing to give up hope. They postponed calling hospice while Boyd tried Iressa. After three weeks, he was still deteriorating, but again they delayed hospice to get a month's refill of Iressa. Finally, with Jackie physically and mentally sapped from caring for her 56-year-old husband at home, they called in hospice -- just eight days before his death, as it turned out.
Hospice workers brought a hospital bed, a wheelchair, and a shower stool to the Arnolds' home. They sent an aide to help bathe Boyd, and provided several different nurses that week to check on him. But in just a week, the Arnolds did not have time to use the full range of nursing, social, and spiritual services available through hospice to prepare for Boyd's death.
While the nurses provided morphine for Jackie to administer, for example, she was not sure how much to give in his last days and erred on the low side, leaving him in some pain, according to Temel. And on July 25, when Boyd's breathing became shallow and quick, he died before a hospice nurse arrived to help Jackie.
''It was as if someone threw you a lifeline, but didn't tell you how to use it," said Jackie.
Hospice officials say they are trying to reduce barriers to hospice care and adapt to the change in end-of-life medical treatments.
A survey two years ago by the state hospice federation indicated that 14 percent of the state's 44 hospice agencies would not admit patients on palliative chemotherapy or palliative radiation, treatments designed to reduce pain and other symptoms, according to Cunningham. But nearly all now say they accept at least some of these patients on a case-by-case basis.
''Historically, someone who was receiving radiation was working more in a curative bent," said Diane Bergeron, executive director of Hospice Care Inc. of Stoneham, which accepts patients on Iressa or palliative radiation but gets few such referrals from doctors. ''Now, that's not necessarily true."
The cost of the treatments remains a hurdle, however. Medicare and most private insurers pay hospice a flat daily fee for all care of a patient -- Medicare's payment in Massachusetts is $133 a day. Drugs such as Iressa can eat up half of that, according to doctors and hospice providers. And Medicare has not changed the program much since it was established as a benefit in 1983.
To help families such as the Arnolds, patient advocates are beginning to press for a change in the Medicare hospice benefit to allow more treatment in parallel with comfort care. Doctors and hospice officials are pushing for an increase in the daily fee Medicare pays to hospice programs.
In addition, many hospitals and home health organizations are developing programs that bridge the gap between cure and hospice by offering home nursing care and support services while patients are still getting aggressive treatments. Medicare and many insurers cover these programs for homebound patients. Aetna, one of the nation's largest insurers, will begin a far more expansive pilot program in January, covering hospice and curative care simultaneously for the last year of a patient's life.
At MGH's cancer center, referrals to such bridge programs are increasing as hospice referrals fall, said oncology care coordinator Beverly Hudson.
''Ultimately, the system is not at all set up to support what patients need at the end of life," said Elizabeth Liebow, an official at Partners Healthcare who is working with the doctors and insurers to change that. ''It's not keeping pace with where the current treatments are."
A Humorist Illuminates the Blessings of Hospice
By Jane E. Brody : NY Times Article : January 23, 2007
As the self-described “man who would not die,” the humor columnist Art Buchwald was a strange bedfellow with the hospice movement. But in the months between the end of his extended hospice stay and his death from kidney failure on Wednesday at age 81, Mr. Buchwald was a living testimonial to the benefits of hospice care.
What he hoped to do, he wrote in his recently published book, “Too Soon to Say Goodbye” (Random House, 2006), was make “hospice” a household word. “Unless they’ve had some experience with it, the hospice is still a mystery to most people,” he wrote. “Because hospice deals with death, people tend not to talk about it.”
Early last year, Mr. Buchwald wrote, after his kidneys failed, after he lost half a leg and after doctors told him he would have to be on dialysis for the rest of his life, he decided “enough already.” So he moved from a critical care bed to a comfortable room in a lovely hospice in Washington, D.C., to await his death, which his doctor expected would come in a few weeks.
But Mr. Buchwald managed to charm the Angel of Death. He did not die. Instead, his kidneys rebounded while he entertained a steady stream of visits from the rich and famous and ordinary in his hospice living room. And while his doctors said his kidneys would surely crash again soon, they did not. Finally, after five months of having “a swell time — the best time of my life,” Mr. Buchwald checked himself out of hospice to resume an ordinary life of a famous old funny man.
He continued to write his column and he worked on his book, in which he provided a first-hand account of the advantages of hospice.
“The hospice gives a person the opportunity to die with dignity,” he wrote. “It provides care, help, and as much comfort as possible.”
And not just for the person who is dying. As Mr. Buchwald described his experience, “When the patient enters the hospice, an entire team sets to work to meet the family’s needs — a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator, and of course, the volunteers,” who give nurses more time to spend with patients by answering phones, screening calls and running errands.
An Underused Service Hospice services, in institutional settings or at home, benefit only about one person in three who dies in this country. “There are still over one million Americans who die each year without receiving hospice or hospice-type services that would have benefited them and their families,” according to a report, “Access to Hospice Care,” produced in 2003 by the Hastings Center.
And for most who do get hospice care, the benefit is short-lived, with the average patient receiving care for less than three weeks, 1 person in 3 for the last week of life, and 1 person in 10 for the last day of life.
With time in hospice so short, staff members often lack the opportunity to provide optimum care for a dying patient’s physical and emotional needs. It can take days or weeks to determine the best way to control a patient’s pain, to help a patient tie up life’s loose ends and to fulfill a patient’s spiritual and emotional needs.
The most common report from families after a loved one’s death is regret that hospice had not been called in sooner. In a study of 275 patients, families that benefited from hospice thought three months would have been optimal and that less than three weeks was too short.
There are several reasons that more patients do not go into hospice care earlier. One is the Medicare-dictated requirement that patients entering hospice forgo life-prolonging treatment for their disease and waive coverage that would pay for such treatment. Some patients or their families refuse to stop therapy for a fatal disease, even when it is obviously not helping.
Only comfort care is covered through the hospice benefit, and patients sometimes have to fight for therapies to control distressing symptoms, like blood or platelet transfusions, that may coincidentally prolong their lives.
Medicare also requires that the doctor referring someone for hospice care must certify that the patient is expected to die within six months. Doctors — as was the case with Mr. Buchwald — are notoriously poor at predicting life expectancy unless patients are within days or hours of death. And for most life-threatening chronic diseases — congestive heart failure, kidney failure — it is impossible to predict longevity with the precision that Medicare requires.
Some doctors fear allegations of fraud if patients they refer to hospice do not die within six months, and so are afraid to make an early referral even when patients are ready to end life-prolonging treatments. And, as the Hastings report noted, “Fearing denial of reimbursement and ensuing financial difficulties, some hospice programs are denying access to those whose condition is not worsening or who might stay for so long that they would bring regulatory scrutiny upon the hospice agency.”
Finally, there are simply not enough hospice centers and services available to meet the needs of dying patients throughout the country. Most hospices operate on a shoestring, supported by donations as well as reimbursements from Medicare and private insurers. Insurers rarely cover the full costs of operating a well-run hospice service. Yet good hospice care costs far less than treatment of dying patients in hospital intensive care units, which insurance does cover.
Understanding End-of-Life Care The philosophy of hospice is to neither hasten nor postpone death. As Dr. Matt Kestenbaum, the medical director of Mr. Buchwald’s hospice, put it: “We’re not here to pull the plug. We let nature take its course, and we give patients all the things they need to be comfortable.”
Dying “naturally” in hospice does not preclude treatment for common complications like blood clots, urinary tract or respiratory infections or painful bone metastases from advanced cancer. Hospice expenses are automatically covered by Medicare. Most employer-based and private insurers provide hospice coverage as well.
Choosing hospice care does not mean patients lose the services of their personal doctors. Nor are they penalized if, like Mr. Buchwald, they leave hospice care because their condition improves or they want a therapy the hospice does not provide. They can return to regular insurance benefits, and should the need arise later, they can reinstate hospice benefits.
One concern of doctors is that patients will lose hope if they go into hospice. But the goal should be to refocus hope on what might be realistically achieved in the time remaining. A patient who enters hospice sooner rather than later can have the opportunity to spend quality time with family and friends, settle unfinished business and find closure to strained relationships.
For those who wish to obtain hospice care at home, it is essential to have a caregiver — usually a spouse or other family member, or a partner or friend — who is willing and able to take primary responsibility for the patient, assisted by the hospice team. For patients who need nursing home care, there are many hospices that have contracts with local nursing homes.
Ideally, patients or families should research hospice options well in advance of needing them. Check the Web site for the National Hospice and Palliative Care Organization, www.nhpco.org, and click on Find a Provider. Or call (703) 837-1500 . The Web site provides a list of questions to ask when seeking hospice services.
A Chance to Choose Hospice, and Hope for a Cure
By Reed Abelson : NY Times Article : February 10, 2007
The American health care system has long given patients a terrible choice: people told that they have a terminal illness must forgo advanced medical treatment to qualify for hospice care. Cancer patients have to pass up chemotherapy, for example, or patients with kidney failure must abandon dialysis.
Forcing patients into this either-or decision has prompted many who might benefit from a hospice program to instead opt for expensive hospital care that may end up costing Medicare and other insurers far more.
But now, some hospice programs and private health insurers are taking a new approach that may persuade more patients to get hospice care for the last months of life. These programs give patients the medical comfort and social support traditionally available through hospice care, while at the same time letting them receive sophisticated medical treatments that may slow or even halt their disease.
Hospice care is intended to help patients and their families better cope with the end of life by providing social services and special care.
Experts say that if the new approach catches on more broadly, more patients who would benefit from hospice care will actually enter hospice programs — and enter them earlier. And more patients, they say, could avoid the costly, crisis-ridden final weeks in a hospital that often still represent the American way of death.
In 2005, only about a third of the 2.4 million people who died in this country were in hospice care. Perhaps twice that many patients should have been in hospice programs, according to specialists in the field. And even many of those who entered hospice care did so only at the very end of their illnesses, spending a week or less in a program that ideally would have helped them cope with the final six months or year of life.
For too many of those patients, “that’s not hospice; it’s last rites,” said Dr. John W. Rowe, the former chairman and chief executive of Aetna, one of the big insurers that is rethinking hospice care.
UnitedHealth is another insurer that now lets hospice patients also receive advanced medical treatments. Meanwhile, some of the nation’s 4,200 hospice programs are offering advanced medical treatment even when they are not paid more to do so.
The new approach, which proponents call “open access” hospice, is an example of the efforts by some insurers and health care providers to try to fix specific problems in the nation’s medical system even as politicians and businesses weigh sweeping health care overhaul proposals in Washington. Being able to have potentially life-prolonging medical treatment makes all the difference to hospice patients like Gary Marko, 42, who has advanced gastric cancer and is recovering from recent surgery for his condition.
“I probably would not have elected to go to hospice, if curative care wasn’t an option,” Mr. Marko said. He is considering taking chemotherapy even as he receives the kind of additional care available through a hospice program, like visits from a nurse and a massage therapist at his home in Covington, Wash. Both types of care will be paid for by the Aetna coverage he receives through his employer.
Dr. Rowe, whose medical specialty is caring for the elderly and is now a health policy professor at Columbia University, pushed Aetna to begin an experiment two years ago to pay for traditional medical care even while covering hospice services, usually at home, like nursing care or a home health aide.
Many doctors say the either-or approach, if it ever made sense, is less valid now that continued advances in medicine can allow even patients with very advanced disease to benefit from new treatments. “The whole dichotomy is entirely false,” said Dr. Ira R. Byock, the director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
There are many reasons people are slow to consider hospice care — not the least of which is acknowledging that they are dying.
But Dr. Byock rejects the notion that the only point of hospice is to help people die. He says that by offering nursing care and palliative medicine to relieve pain and improve the quality of life, hospice care can benefit some people so much that they become well enough to leave the programs. The Aetna experiment, for which nearly 400,000 of its roughly 15 million insured members are eligible, provides some evidence that people will take advantage of hospice care if they do not have to give up other treatment intended to prolong life.
Mr. Marko said that once he learned that Aetna would not ask him to forgo chemotherapy, there was no reason not to sign up for the hospice services that allowed him to be more comfortable at home with his wife, Amy, and their three young children. His massage therapy makes him feel better, for example, and he plans to try the acupuncture available through the program.
“What’s to lose?” Mr. Marko said.
What can be gained is more time to take advantage of hospice’s benefits. One woman in the Aetna experiment who had breast cancer was able to continue chemotherapy even as she enrolled in a hospice program that offered the nursing care she needed before she died.
“She just wasn’t ready to give up,” said Sharon Brodeur, a nurse and Aetna administrator who helped develop the experimental program. The patient probably entered the program two or three months earlier than she would have if she had had to give up chemotherapy, Ms. Brodeur said.
The Aetna initiative and other open-access programs are still the exceptions, though.
For example, Medicare which spent about $9 billion on hospice benefits last year out of its total spending of $406 billion, requires patients to give up regular medical coverage if they enter a hospice program.
Medicare officials say that patients can opt for hospice care and then change their mind, resuming traditional coverage. And they say that nothing in Medicare’s rules prevents hospice programs from providing a full range of medical treatments.
But many hospice programs do not offer advanced medical treatments because they say they cannot afford to. Medicare pays a provider about $130 a day for routine hospice care in the home, regardless of the patient’s individual condition. The agency, which introduced the benefit in the mid-1980’s, based its rules on the assumption that it would be too costly to pay for both hospice care and for treatments aimed at prolonging life.
Many experts, though, say that thinking is misguided because it causes patients to spend their last days in a hospital receiving expensive care they may not even want, or to frequently return to the hospital because managing their disease is too much for a family to handle.
“What they’re doing instead is paying for unnecessary emergency room visits,” said Dr. Diane E. Meier, a professor at Mount Sinai School of Medicine in New York and an expert in palliative care.
Medicare officials, though, cite the growing popularity of hospice programs as an indication that the benefit is valuable in its current form.
Hospice care has been allowed to “thrive and prosper,” said Laurence Wilson, the director of chronic care policy for the Center for Medicare Management. But he also emphasized that patients who still wanted aggressive medical treatment had the option of sticking with traditional Medicare coverage.
Hospice is “not all things to all people,” Mr. Wilson said.
Many people in the field say that Medicare’s fixed-payment system discourages some hospice programs from accepting patients who need expensive treatment.
“The perverse incentive is to take the cheapest patient,” said Carolyn Cassin, the chief executive of Continuum Hospice Care, who said such a patient would be someone who had already given up hope and required very little medical care. Continuum Hospice Care is part of the hospital system of the same name in New York and is among the small number of hospice programs that makes a point of taking even those patients who want sophisticated treatment.
Because Continuum Hospice cared for 2,700 patients last year, on a budget of about $42 million, the program is large enough to absorb the cost of some very expensive patients, Ms. Cassin said.
“You’re never going to have to choose between treatment for the disease and care from us,” she said, noting that about 40 percent of Continuum Hospice patients received advanced medical therapies.
When 76-year-old Charles Tirone, who had late-stage lung cancer, was discharged from the hospital late last year, for example, he was able to continue his radiation treatments and still enroll in Continuum’s hospice program. Social workers and nurses managed his care at his West 57th Street apartment in Manhattan, until his death on Tuesday evening.
The social worker assigned to Mr. Tirone “tried her best to make Charlie comfortable,” said Michael Abbassi, a longtime friend who helped care for him.
Many other hospice programs are exploring the Continuum-style of open access, accepting patients with insurance at the end of life who may want and need aggressive medical treatments.
“This has been a big movement and a big discussion over the last five years,” said Malene Davis, the chief executive of Capital Hospice in Falls Church, Va., which cared for about 5,100 patients last year.
Many hospice programs, though, are too small to spread their costs, which would allow them to take patients needing expensive treatments. And if they meet basic state and Medicare requirements that include offering access to a nurse and a doctor 24 hours a day, hospices can essentially pick and choose which treatments to offer as long as they are meeting a patient’s needs.
“There is a huge variation in what programs provide,” said Dr. Mark Leenay, the medical director of palliative initiatives at UnitedHealth, the big insurer.
Because Medicare does not collect detailed data about the medical treatments a hospice patient receives, there is very little information about what services are actually being provided. Some argue that Medicare should simply drop the requirement that patients forgo other coverage if they want hospice care.
As part of a much broader effort toward revamping health care, Senator Ron Wyden, Democrat of Oregon, has introduced legislation that would end that requirement. He says that the change would not significantly raise Medicare’s spending, but that it would give people more control over the way they die.
“People don’t want government making their choices,” he said.
One insurer, Blue Cross and Blue Shield of Rhode Island, which typically pays for treatments like chemotherapy as a way to relieve pain even while covering hospice care, says it has not seen a significant increase in the use of medical services because of this broader coverage.
At Dow Chemical, an employer in the Aetna experiment, the company’s executives agreed to pay for the broader coverage because “it’s the right thing to do,” said Steve Morgenstern, who manages Dow’s health plans.
Aetna plans to continue its experiment, which in its first year increased the average length of a hospice stay to 34 days, up from 27. The insurer’s chief medical officer, Dr. Troyen Brennan, predicts that the company will probably end up extending its coverage to more of its insured members.
“Looking at the preliminary data, everything suggests we should move forward,” he said.
Dr. Rowe, the former Aetna chairman, said insurers should not be in the business of forcing people to give up hope. “When I was in practice,” he said, “I wouldn’t do that to a patient.”
There Is Life After Hospice, and Even Golf in Florida for Some
By Reed Abelson : NY Times Article : February 10, 2007
Hospice does not have to mean an immediate death sentence — as the late humorist Art Buchwald demonstrated. Last year, much to his and others’ amazement, he survived for five months in a hospice program before being well enough to leave in July. It was not until last month that he died of kidney failure.
As Mr. Buchwald said that he did, some people find that supportive hospice care may actually lengthen their lives, and that the doctors’ predictions of imminent demise may simply be wrong.
Mitchell Zimble, for example, was discharged from the hospital into a hospice program last summer after his doctors concluded that he would die within a matter of weeks because of his liver cancer. He was not well enough to continue chemotherapy, and one of his doctors wanted to make sure he got the care he needed to be comfortable both in the hospital and later at home.
The doctor, Ira Byock, is a nationally recognized expert in palliative care, a specialty aimed at improving the quality of life for patients with serious illness.
Mr. Zimble — who is known as Mickey — enrolled in a hospice program near his home in rural Vermont. There he received a wide range of services like nursing care and physical therapy. With the physician at the hospice keeping a close eye on him, he began to get better. At one point, the doctor turned to him and said, “On paper you should be dead, but you look great,” Mr. Zimble’s wife, Sandy, recalled.
As soon as Mr. Zimble was strong enough to get chemotherapy, he was able to graduate from hospice. He turned 75 in September and felt well enough for the couple to go to Florida for the winter.
“He’s out there walking and playing nine holes of golf,” said Mrs. Zimble, who credits Dr. Byock for attending to her husband’s needs well enough for him to recover. Dr. Byock “kept him so comfortable that he did not have death on his mind,” she said.
Dr. Byock, who is the director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., says hospice should be viewed not as giving up all hope but about getting the care one needs. If the disease continues to progress, the patient is likely to die, he said. But patients may also be able to gain the weight and strength necessary to prolong their lives.
“We’re trying to change that trajectory,” said Dr. Byock. “We’re not ready to give up.”
Tough Question to Answer, Tough Answer to Hear
By Jane E. Brody : NY Times Article : March 6, 2007
Upon receiving a diagnosis of a fatal illness like metastatic cancer, Alzheimer's disease or congestive heart failure, many patients ask, “Doc, how much time have I got?” It’s a reasonable question, given that there is often much to plan for and accomplish before a progressive illness robs patients of their physical or mental abilities.
Yet prognosticating is one of the most challenging tasks doctors face. Unless patients are within days or weeks of dying, it is often impossible to provide an accurate prognosis. And studies have shown that when doctors do try to gauge a patient’s remaining life expectancy, more often than not they overestimate it. Out of fear, ignorance or concern for their patients’ emotional well-being, they tend to be overly optimistic.
“Accurately predicting life expectancy in terminally ill patients is challenging and imperfect,” a medical team wrote in the journal Mayo Clinic Proceedings in November 2005. “Physicians are typically optimistic in their estimates of patient survival.”
The team, from the Mayo Clinic, cited a study in which survival predictions were made for 468 patients in hospice programs, meaning they had stopped treatment to prolong their lives. Only 20 percent of the predictions were accurate; 63 percent were too optimistic.
In a second study, also among patients receiving hospice care, the median survival was 24 days, but the median survival estimate doctors offered patients was 90 days. In general, researchers have found that doctors tend to overestimate patient survival by a factor of three to five.
As one physician interviewed anonymously by The Journal of the American Medical Association put it, “When we prognosticate and it turns out that the patient lives a longer life, then we can be joyous with them, but when we prognosticate and the patient ends up living a far shorter time, that’s when we really do harm.”
The Value of Candor Patients use information about the expected course of their illness, including how long they are likely to survive, in a variety of ways. It can help them decide whether to take a long-awaited trip, which therapies are worth pursuing, what kind of support system they may need as their condition worsens, and how much time they will have to put their affairs in order.
Patients often have things they want to accomplish before they die, and knowing that their time is short may prompt them to attend to such matters. Receiving a terminal prognosis may also open up conversations about death and dying that may be painful at first but can bring considerable relief to patients and family members alike.
Doctors do best in providing accurate prognoses for patients with advanced cancer, because the disease follows a more predictable course and the medical literature provides a range of survival times for most cancers. For example, when my brother-in-law was found to have mesothelioma, an asbestos-related cancer, he was told he could expect to live 8 to 12 months. He used that time to get his financial and personal affairs in order, share meaningful goodbyes with his family and friends, and pass along a rich legacy of good music, memories and wisdom.
Difficult Choices Arlene Wysong, a New York businesswoman, was 65 years old, ostensibly very healthy and leading a rich, active and fulfilling life when she was surprised by a diagnosis of Stage 4 lung cancer. She said she had quit smoking 22 years earlier after being “a marginal smoker for about 20 years.”
“It was a total shock,” she said, “and I knew what it meant. It meant I had an incurable cancer. I asked for a prognosis. The doctor said 3 to 12 months.”
Ms. Wysong made a choice. Knowing she could not be cured, she chose “no chemotherapy, only palliative care” — treatment for pain and any other symptoms that might impede her ability to live out her last months as fully as possible.
“I didn’t want toxic chemo,” she said in an interview. “I didn’t want to lose my hair and be sick. I felt I had a very short time left, and I didn’t want to spend it being sick. So I rented a house in the country large enough for people to visit and stay overnight, and I enjoyed the summer.
“My goal was to make sure I saw all the friends and family I wanted to see and to spend quality time with them. I made out a new will and transferred my business, but I stayed involved with it for as long as I could.”
Ms. Wysong also used the time to work on serious issues that had caused a rift with her daughter, and they succeeded in restoring a loving relationship. She also outlived her doctor’s prognosis, and 16 months after learning of her cancer, she called in hospice care, remaining at home until she died last October with her family at her bedside.
Prognosis is helpful, not just for patients, but also for their families, who may need to know, for instance, how much time they may have to take off from work, whether they should arrange for an extended leave, what might be involved in caring for a dying person at home and whether other arrangements should be explored.
The Doctor’s Dilemma “Quite separate from the challenge of estimating survival accurately, physicians may also find the process of disclosing the prognosis to their patients difficult,” wrote Dr. Elizabeth B. Lamont and Dr. Nicholas A. Christakis in The Journal of the American Medical Association in July 2003.
In some cases, patients make it clear that they simply do not want to know.
More often, however, the family wants to keep difficult facts from the patient. A study in Ireland, for example, found that while 83 percent of patients wanted to be told the truth, only 55 percent of their relatives wanted the patient to be truthfully informed. The lesson here, the researchers concluded, is for doctors to ask patients, not family members, how much they want to know about their disease.
A common fear among doctors is that providing a terminal prognosis will strip patients of hope. Indeed, it will dash hopes of long-term survival. But the doctor can convey other sources of hope. For example, patients may be relieved to learn that they will remain well enough to attend an important family event, or that palliative care is available for distressing symptoms like pain, nausea and shortness of breath.
Most important, patients say, is for doctors to stay with them until the end. Fear of abandonment (some terminally ill patients are in fact abandoned by their doctors) is extremely common. Doctors see themselves as healers, trained to cure or ameliorate illness, and typically view the impending death of a patient as a personal failure. Rather than face failure, they abandon the patient.
Patients may be able to help themselves in this respect by reassuring the doctor. “I know you tried very hard and I appreciate all you did for me,” they might say. “It’s not your fault that I won’t survive this disease. It would help a lot, though, if you stay with me for the long haul.”
Understanding Hospice — An Underutilized Option for Life's Final Chapter
Gail Gazelle, M.D. : New England Journal of Medicine : July 26, 2007
It was Mr. G.'s third exacerbation of congestive heart failure in the past 6 months. Eighty-three years old, he had New York Heart Association class IV heart failure, end-stage coronary artery disease, and insulin-dependent diabetes. Although he had never wanted to be put on a ventilator, this time his shortness of breath was so terrifying that he felt he had no choice. After having a good response to diuresis, he was successfully extubated and transferred out of the coronary care unit.
Two days later, a hospitalist suggested to Mr. G. and his wife that given his advanced disease, he should consider going home and receiving hospice care there. Sensing the couple's fear,she reassured them that death was not imminent and that members of the hospice staff would work to ensure the best possible quality of life. Relieved, Mr. G. acknowledged that he would prefer to avoid rehospitalization.
Introduced in the United States as a grassroots movement more than 30 years ago and added as a Medicare entitlement in 1983, hospice care is now considered part of mainstream medicine,as evidenced by growing patient enrollment and Medicare expenditures. In 2005, more than 1.2 million Americans received hospice care, and between 2000 and 2004, the percentage of Medicare decedents that had been enrolled in hospice programs increased by almost 50%. But despite its increased use, many aspects of hospice care are still misunderstood by both physicians and patients.
For instance, many would not consider Mr. G. to be a candidate for hospice care. He did not have cancer, and his death was probably months, not days, away. The fact is, however, that slightly less than half of hospice patients have terminal cancer;nearly 40% of hospice admissions are for end-stage cardiac disease, end-stage dementia, debility, pulmonary disease, and stroke.1
Patients and clinicians may also not realize that hospice care at home is free. Medicare is the primary payer for hospice care in approximately 80% of cases, with care most often provided in the patient's home. Commercial insurers also provide hospice benefits, but the specifics of coverage vary. Under Medicare,most expenses related to the terminal diagnosis are paid infull, including all medication and equipment and all visits by hospice nurses and home health aides. (Expenses related to other diagnoses remain covered by the patient's primary insurance provider.) Other hallmark hospice services include intensive emotional and spiritual counseling, 24-hour crisis management,and bereavement support for at least 1 year after the patient's death.
Hospice care can successfully address the critical end-of-lifeconcerns that have been identified in numerous studies: dying with dignity, dying at home and without unnecessary pain, and reducing the burden placed on family caregivers. Evaluation studies reveal consistently high family satisfaction, with 98%of family members willing to recommend hospice care to others in need. And the extensive expertise of physicians specializing in hospice and palliative medicine was recognized in 2006, when the field was accredited as a fully independent medical subspecialty.
Despite these benefits and the general understanding by clinicians that at least 6 months of care are provided, the median length of hospice service is only 26 days, with one third of patients referred to hospice care during the last week of life.1 Factors contributing to late referral include application of a curative model to end-stage incurable illnesses; Medicare's per diem hospice reimbursement, which precludes costly, aggressive therapies;and the mistaken view that patients must have a do-not-resuscitate order.
However, the most important factors in delayed referrals appear to relate to physician attitudes. In its first position paper on the topic of cancer and dying, the American Society of Clinical Oncology acknowledged that many oncologists and other physicians regard the death of a patient as a professional failure. Many also fear that they will destroy their patients' hope, which physicians may believe lies only in efforts to increase the quantity rather than quality of life. Furthermore, physicians receive little training in the compassionate discussion of bad news. But perhaps the most critical factor is that physicians view hospice care as something reserved for the imminently dying instead of as a service designed to help people live as well as possible in the face of advanced incurable disease.
To determine eligibility, the attending physician and hospice medical director must certify that to the best of their judgment,the patient is more likely than not to die within 6 months.Responsibility for determining ongoing eligibility rests with the director. To assist physicians in prognosticating, Medicare provides broad guidelines for many medical conditions,but these guidelines do not represent hard-and-fast requirements.Coexisting conditions or a particularly rapid functional decline can outweigh strict adherence to written requirements.
After enrollment, a plan of care is developed in accordance with the needs and wishes of the patient and family, often tempered by the presence or absence of caregivers to participate in day-to-daycare. The primary goal is to ensure that pain and such symptoms as insomnia, dyspnea, depression, constipation, agitation, nausea,and emotional and spiritual distress are aggressively addressed. Most clinical care is provided by a hospice nurse, and the vast majority of patients are not seen by a physician. Mr. G.'s planof care included continuing high-dose furosemide, adding low-doselorazepam for the anxiety that typically accompanies shortnessof breath, and initiating low-dose liquid opioids, a mainstay in the management of dyspnea.
To address Mr. G.'s nonmedical needs, a home health aide provided assistance with personal hygiene and dressing for an hour eachday, 5 days a week. The hospice social worker offered to have a volunteer shop for groceries and provide companionship. The social worker also talked with the family and identified the need to address Mr. G.'s anxiety and his wife's fears about the future. Noting that Mr. G. had concerns about whether God was punishing him for past acts, she encouraged visits by the hospice chaplain.
Hospice emphasizes an interdisciplinary approach to care. Inmost cases, at least once every other week, the hospice team— nurses, social workers, a pastoral counselor, the bereavement coordinator, and the medical director — meet to discuss the needs of the patient and family. In the interim, nurses call attending physicians with their recommendations.
One serious challenge in hospice care is that attending physicians typically receive little to no training in the use of medications for pain and symptom management and thus rely on a presumed level of expertise on the part of the hospice nurse. Given the current nursing shortage, however, such an assumption of competency may or may not be well founded. Attending physicians should routinely evaluate recommendations and should have a low threshold for reviewing cases with the hospice medical director.
As a patient's disease progresses, the hospice plan shifts to accommodate decreasing independence, alterations in symptoms,and changing psychosocial needs. In Mr. G.'s case, the realization that his symptoms could be managed at home lessened his anxiety,which in turn decreased episodes of chest pain. Flash pulmonary edema occurred less frequently; during one such episode, he received intravenous furosemide in his home, since he wantedto avoid further hospitalizations. During 4 months of hospice care, Mr. G.'s condition gradually deteriorated, with increasing weakness, dyspnea, and cardiac cachexia. Near the end, his family and friends gathered, and he died peacefully with his wife andnurse at his side. Despite his family's grief, they expressed their appreciation that Mr. G. had maintained a reasonably high quality of life and had died in his home as he had wished.
With the growing number of baby boomers seeking more control over all aspects of their health care, the use of hospice care will probably continue to increase. It is especially important,therefore, that physicians become more familiar with what hospice care offers and work to overcome barriers in talking frankly with patients about what lies ahead.
Source Information
Dr. Gazelle is a member of the Division of General Medicine and Primary Care at Brigham and Women's Hospital and president of MD Can Help — both in Boston.
Letting Go of the Rope — Aggressive Treatment, Hospice Care, and Open Access
Alexi A. Wright, M.D., and Ingrid T. Katz, M.D., M.H.S. :New England Journal of Medicine : July 26, 2007
More Americans are choosing hospice for end-of-life care, but ironically, hospice patients increasingly are forced to give up effective palliative treatments along with aggressive medical intervention. For Joanne Doolin, a 64-year-old mother of three who spent her last 2 years of life fighting colon cancer that eventually made it impossible to eat, enrollment in hospice care involved a difficult trade-off: with only a few weeks left to live and her daughter's wedding approaching, Doolin was forced to choose between entering hospice care and continuing to receive total parenteral nutritional support.
Unfortunately, treatment options are often limited by the economic constraints of hospice care. The hospice that was the closest to Doolin's Boston-area home would accept only patients willing to forgo life-sustaining treatments, including chemotherapy and parenteral nutrition. It cares for only about 20 patients at a time with three nurses, a manager, a part-time chaplain,and a medical director who works there one morning a week. As a small program, it cannot negotiate pricing or spread the cost of expensive medications across many patients. A few large hospices offer what is called open-access care, which allows patients to add hospice care to their current medical treatment, but this option is not available in Massachusetts.
The Medicare hospice benefit reimburses hospices on a per diem basis, paying fixed inpatient and outpatient fees regardless of services provided. Despite adjustments for inflation, the fees have not kept up with the cost of cutting-edge palliative treatments. Many patients who meet the criterion for hospice care — having less than 6 months to live — still opt for palliation from oral chemotherapies, radiation, antiemetics,or blood transfusions. But these treatments can cost more than $10,000 per month — too much for most hospice programs.
Although some observers worry that nationwide open access could bankrupt Medicare, most agree that per diem reimbursement rates remain unacceptably low: in 2006, hospices were paid an average of $563 per patient per day for inpatient care (which represents 2.7% of Medicare's total hospice payments) The average outpatient fee was $126 for a typical day of care, an amount that must cover nursing care; contributions from social workers, chaplains, and volunteers; and all drugs and durable medical equipment, as well as 13 months of bereavement support.
Despite differences among hospice programs, patient and family satisfaction is high; in 2005, one third of the 2.4 million Americans who died were receiving hospice care. The largest proportion of patients had cancer, although patients with dementia,heart disease, and fatal lung conditions are increasingly entering hospice care. Diane Meier, director of the Center to Advance Palliative Care at the Mount Sinai School of Medicine in New York, argues that "palliative care and hospice are the only medical disciplines where nurses and physicians focus on the whole person."
Most patients, however, wait until the last few weeks of life to enroll. In 2005, the median hospice stay was 26 days. One contributing factor is late referrals by oncologists, who routinely overestimate patients' lifespans. Many patients are referred only when no other option remains.
In addition, many patients fear that they will not receive enoughmedical services in hospice care. "It felt like I was trading in the Lamborghini of medical care for an old pick-up truck driving down a rutted road," said one patient with cancer. Optima lend-of-life support often necessitates careful titration of opioid, antipsychotic, and anxiolytic drugs, which can sometimes require a doctor's presence. But few patients ever meet a physician after enrolling for hospice care; there are no rules mandating the degree of physician involvement. Medicare does not even collect information on the number, frequency, or duration of visits or on which personnel provide which aspects of care. Each hospice program decides what services to offer, and family members often must fill in the gaps.
Like most patients with terminal illness, Joanne Doolin chose ongoing medical treatment over hospice. She entered a bridge-to-hospice program that provided home nursing care and access to an infusion company for nutrition until she was ready for hospice care.She spent more than a month at home, visited her favorite casino,and attended her daughter's wedding. But then Doolin's health suddenly deteriorated, and she needed urgent medical care and pain management. Her family contacted the bridge program's hospice but could not enroll her in time. During Doolin's last few hours,care was provided by a haphazard mix of people, including her family, a covering oncologist, a pharmacist, and compassionate local firefighters. One year later, Doolin's family is still angry over the forced choice between parenteral nutrition and hospice care. They believe she would have suffered less in an open-access hospice program.
The disconnect between prehospice and hospice care seems absolute to physicians as well. The Medicare hospice benefit "is so restrictive,"says Thomas Smith, chair of the division of hematology–oncology and palliative care at Virginia Commonwealth University–Massey Cancer Center, in Richmond, "that it requires divorcing yourself from your patient's care because you can't be their cancer doctor anymore. As soon as you enroll in hospice, there goes your Aranesp, your Zometa, and your Zofran. . . . I can't do anything but adjust pain meds and hold hands. These are wonderful things to do, but they won't keep my office running." Many hospice directors counter that oncologists abandon their patients when they can no longer visit the office.
A few large hospices and insurance companies are trying to preventthese situations with open-access programs. Last year, Capital Hospice, based in Washington, D.C., paid for palliative chemotherapy,radiation, dialysis, blood transfusions, parenteral nutrition,antibiotics, and other expensive intravenous medications. Withan average daily census of 606 patients, the program can spreadout the expense. President and chief executive officer MaleneDavis likens open access to "two ropes hanging from the ceiling.We've asked people to hold on to the aggressive-treatment ropewith both hands," she says, "but when they go on hospice wetell them to let go completely. Open access gives people thechoice to let go of active treatment with one hand and grab on to the hospice rope until they feel comfortable letting the other hand go."
The large insurance company United Health offers a basic open-accesshospice benefit to nearly 26 million members and a smaller hospiceprogram in 11 cities that includes physician home visits and reviews of care. A company spokesperson says that the cost is negligible as compared with the cost of its other programs.In 2004, Aetna started its Compassionate Care Program, which uses International Classification of Diseases, Ninth Revision,codes and pharmaceutical information to identify members with terminal illnesses; the members are then contacted by nursecase managers, who offer emotional support, care coordination,and information about end-of-life planning and symptom relief.Early results suggest that members appreciate the additional support that tailored case management provides; more members are enrolling in hospice, and the program is reducing rates of unnecessary hospitalizations.
But these programs remain the exception. According to the Centerfor Medicare and Medicaid Services (CMS), only 2.5% of the country's4100 hospices have an average daily census above 400 —commonly considered the minimum requirement for open access. Elsewhere, patients and hospice directors must make tough choices.
The only randomized trial to date examining standard cancer care both with and without hospice support showed no significant difference in survival rates, but it did show significant improvements in quality of life when cancer care and hospice care were combined. Preliminary analysis revealed a 27% cost reduction in the combined-care group, which received less chemotherapy and diagnostic testing and required fewer hospitalizations.
Nevertheless, many experts worry that open access may be prohibitively expensive. A 1990 study showed that most patients with cancer would choose to undergo toxic chemotherapy despite marginal potential benefits; a study in 2004 reported increasingly aggressive care at the end of life. Patients with congestive heart failure also face difficult choices, since life-sustaining medications can cost $1,300 per day. "Whoever wrote [Medicare's hospice]policy has never taken care of sick patients," argues Diane Meier. "Our patients are fighting for their lives and will do anything to extend the length of time they live, as long asthey have some quality of life."
CMS foresees an annual increase of 9% in hospice spending over the next decade, which will outpace increases for hospitals,physicians, skilled nursing facilities, and home health services. Many expect closer scrutiny of hospice reimbursements by Medicare,particularly for patients with dementia or other illnesses,who often live with the disease for more than 6 months. "Baby boomers are going to want everything — from death coaches to powerful drugs," says Davis, "but we've got to begin grappling with tough choices if we're going to stay in business for $150a day."
Some choices will undoubtedly involve better definitions of palliative treatment. Currently, oncologists focus on how wella tumor responds to chemotherapy, but they will soon have to examine improvement of symptoms and quality of life to justify treatment costs. Meanwhile, patients will simply have to hope for access to a hospice that is large enough to help them.
Source Information
Dr. Wright is a fellow in hematology–oncology at the Dana–Farber Cancer Institute, and Dr. Katz is a fellow in infectious disease at the Beth Israel Deaconess Medical Center — both in Boston.
Between Comfort and Care, a Blurry Line
By Sandeep Jauhar, M.D. : NY Times Article : September 18, 2007
As a heart failure specialist, I often take care of patients near the end of their lives. I am sometimes asked to predict how long someone is going to live. On rare occasions, I have even been asked to assist in someone’s death.
I once took care of an 84-year-old woman with end-stage heart failure who told me she couldn’t bear feeling short of breath and pleaded with me to help her die. “Is Nov. 15 a good day for you?” she asked.
I explained that I could not assist in her death, though I could give her morphine to relieve her suffering.
“If you were like me, you’d say the same thing,” she said ruefully. “I’m half gone. Nobody wants to bother with you when you’re like this.”
With her permission and her family’s, she was enrolled in a hospice program. But she never made it out of the hospital.
I recently cared for a man in his late 30s whose heart failure, a result of severe coronary disease, had progressed to the point where his kidneys had nearly stopped working. Michael spent most of his days sitting in a chair, head resting on his palm, unable to complete a sentence because of shortness of breath. Intravenous drugs dripped into catheters in his arms, which were so waterlogged that a hospital ID band dug a deep furrow into his wrist.
Because of inadequate social and family support, Michael had been deemed ineligible for a heart transplant or an artificial assist device. Given the dearth of available organs, cardiologists feared that if he didn’t take his medications properly and rejected a donor heart, the result would be two deaths, not one.
Michael wanted to live out his remaining days at home with his family. He understood that his condition was terminal and that the end was near. So we discharged him from the hospital.
It is always difficult to see a patient die, especially one as young as Michael. We doctors are not trained for it. Once, as a resident, I took care of an elderly man with drug-resistant leukemia and fungal pneumonia. When death was imminent, his son tried to put restrictions on blood draws. “I know my father, and he did not want to live this way,” he said. “The one thing he always prayed for was that he would go in his sleep.”
But we quickly discovered that it was almost impossible not to draw blood from a cancer patient. Some reason or another always came up. Eventually his family instructed us to provide “comfort care,” which meant no needle sticks and a steady infusion of morphine. For a while, his condition seemed to improve. My first instinct was to turn off the morphine drip, but the attending physician, more experienced in these matters, dialed it up even further. I was afraid he might stop breathing, but of course that was the whole point. It is called the law of double effect. It was O.K. for us to hasten his death in the service of treating pain and discomfort.
One evening just before leaving the hospital I received a phone call from Michael’s visiting nurse. He told me that Michael’s blood pressure was dangerously low and that his complexion was pallid, even a bit blue. Hospice care was supposed to have been set up, but the hospice nurse had not yet come to the house. So what did I want to do, the nurse wanted to know. He said he did not feel comfortable providing narcotics to relieve Michael’s discomfort. I wasn’t sure what to do, so I told him to send Michael to the emergency room.
In the United States, patients with terminal illnesses often spend a large part of the end of their lives in the hospital. In Newark, for example, a dying patient spends an average of three weeks in the hospital before death. At the institution where I trained in Manhattan, patients spend nearly 30 days of the last six months of their lives in the hospital. Nearly every doctor I’ve talked to recognizes that this wastes precious resources and prolongs suffering. But they — I — have not been taught a different way.
In the hospital, Michael’s condition was stabilized with powerful medications. Once again, hospice care was put in place and he was discharged home.
A few days later I got a call at 6:45 in the morning from the microbiology lab telling me that blood cultures, drawn while Michael was in the E.R., were positive for a particularly virulent bacteria. Did I want to prescribe antibiotics to treat the underlying infection? Or simply tell the hospice nurse to alleviate any fevers with Tylenol and ice packs?
I called the nurse and explained the situation. “We do give antibiotics,” she assured me. “Sometimes we view it as a comfort measure, and sometimes people want everything done.”
“You still accept patients into hospice if they want everything done?” I asked.
“Well, it usually doesn’t start off like that,” she said, “but sometimes the nearer some people get to death, the more desperate they get. We try to discourage some things, but in the end you have to decide on a case-by-case basis.”
So, after consulting with Michael and his family, I ended up ordering an IV antibiotic. But then an infectious-disease specialist told me it wasn’t safe to administer the drug without drawing blood for certain tests — an electrolyte panel, a complete blood count and a drug level — at least once a week. At first I resisted. Wasn’t this something to be avoided? But in the end I acquiesced, convincing myself that giving the drug without proper monitoring might lead to greater discomfort.
A couple of days later the nurse called to tell me that the antibiotic was causing Michael to develop chest pain. The infectious-diseases doctor suggested another antibiotic, nearly $150 a dose. A couple of days later I got a call from a hospice physician rebuking me for using such an exorbitant drug when Michael only had a few weeks to live anyway. She said I might have to decide between the antibiotic and hospice care. So I stopped the drug.
Doctors need better training in how to help patients end their lives with dignity. The trend is in the right direction. The number of hospitals offering palliative medicine has nearly doubled since 2000, growing to 1,240 programs. Today, pain, nausea and shortness of breath are properly recognized as scourges of the terminally ill, and are aggressively treated. But the medical profession still has a long way to go.
Michael was readmitted to the hospital once more before he died. His family decided they did not want him to die at home, so they sent him back to the E.R. Eventually, he was discharged to a hospice facility, where he died a week later.
Managing end-of-life care, I have learned, is never straightforward. When I think of how Michael died, I remember what an elderly woman with terminal heart disease once told me in the hospital. “My husband said the hardest thing to do is to die; I always thought it would be easy.”
Sandeep Jauhar is the author of a memoir, “Intern: A Doctor’s Initiation,” to be published in January by Farrar, Straus & Giroux.
A Final Farewell - The Randy Pausch Story
By Jeffrey Zaslow : WSJ Article : May 3, 2008
Saying goodbye. It's a part of the human experience that we encounter every day, sometimes nonchalantly, sometimes with great emotion.
Then, eventually, the time comes for the final goodbye. When death is near, how do we phrase our words? How do we show our love?
Dr. Randy Pausch, a 47-year-old college professor at Pittsburgh's Carnegie Mellon University, has become famous for the way in which he chose to say goodbye to his students and colleagues. His final lecture to them, delivered last September, turned into a phenomenon, viewed by millions on the Internet.
Dying of pancreatic cancer, he showed a love of life and an approach to death that people have found inspiring. For many of us, his lecture has become a reminder that our own futures are similarly -- if not as drastically -- brief. His fate is ours, sped up.
Since the lecture, I've been privileged to spend a great deal of time with Randy, while co-writing his new book, "The Last Lecture." I've seen how, in some ways, he is peacefully reconciled to his fate, and in other ways, understandably, he is struggling.
The lecture was directed at his "work family," a call to them to go on without him and do great things. But since the talk, Randy has been most focused on his actual family -- his wife, Jai, and their three children, ages 6, 3, and 1.
For months after receiving his terminal diagnosis last August, Randy and Jai (pronounced "Jay") didn't tell the kids he was dying. They were advised to wait until Randy was more symptomatic. "I still look pretty healthy," he told me in December, "and so my kids remain unaware that in my every encounter with them I'm saying goodbye. There's this sense of urgency that I try not to let them pick up on."
Through both his lecture and his life, Randy offers a realistic road map to the final farewell. His approach -- pragmatic, heartfelt, sometimes quirky, often joyous -- can't help but leave you wondering: "How will I say goodbye?"
* * *
See related videos at Wall Street Journal videos, randypausch.com and thelastlecture.com.
Maybe 150. That's how many people Randy expected would attend his last lecture. He bet a friend $50 that he'd never fill the 400-seat auditorium. After all, it was a warm September day. He assumed people would have better things to do than listen to a dying computer-science professor in his 40s give his final lesson.
Randy lost his bet. The room was packed. He was thrilled by the turnout, and determined to deliver a talk that offered all he had in him.
He arrived on stage to a standing ovation, but motioned to the audience to sit down. "Make me earn it," he said.
He hardly mentioned his cancer. Instead, he took everyone on a rollicking journey through the lessons of his life. He talked about the importance of childhood dreams, and the fortitude needed to overcome setbacks. ("Brick walls are there for a reason. They let us prove how badly we want things.") He encouraged his audience to be patient with others. ("Wait long enough, and people will surprise and impress you.") And, to show the crowd that he wasn't ready to climb into his deathbed, he dropped to the floor and did push-ups.
His colleagues and students sat there, buoyed by his words and startled by how the rush of one man's passion could leave them feeling so introspective and emotionally spent -- all at once saddened and exhilarated.
In 70 minutes onstage, he gave his audience reasons to reconsider their own ambitions, and to find new ways to look at other people's flaws and talents. He celebrated mentors and protégés with an open heart. And through a few simple gestures -- including a birthday cake for his wife -- he showed everyone the depth of his love for his family. In his smiling delivery, he was so full of life that it was almost impossible to reconcile the fact that he was near death -- that this performance was his goodbye.
I'm a columnist for The Wall Street Journal, and a week before Randy gave the lecture, I got a heads-up about it from the Journal's Pittsburgh bureau chief. Because my column focuses on life transitions, she thought Randy might be fodder for a story.
I was aware that professors are often asked to give "last lectures" as an academic exercise, imagining what wisdom they would impart if it was their final chance. In Randy's case, of course, his talk would not be hypothetical.
I first spoke to him by phone the day before his talk, and he was so engaging that I was curious to see what he'd be like onstage. I was slightly ill at ease in our conversation; it's hard to know what to say to a dying man. But Randy found ways to lighten things up. He was driving his car, talking to me on his cellphone. I didn't want him to get in an accident, so I suggested we reconnect when he got to a land line. He laughed. "Hey, if I die in a car crash, what difference would it make?"
I almost didn't go to Pittsburgh to see him. The plane fare from my home in Detroit was a hefty $850, and my editors said that if I wanted, I could just do a phone interview with him after the talk, asking him how it went. In the end, I sensed that I shouldn't miss seeing his lecture in person, and so I drove the 300 miles to Pittsburgh.
Like others in the room that day, I knew I was seeing something extraordinary. I hoped I could put together a compelling story, but I had no expectations beyond that.
Neither did Randy. When the lecture ended, his only plan was to quietly spend whatever time he had left with Jai and the kids. He never imagined the whirlwind that would envelop him.
The lecture had been videotaped -- WSJ.com posted highlights -- and footage began spreading across thousands of Web sites. (The full talk can now be seen at thelastlecture.com.) Randy was soon receiving emails from all over the world.
People wrote about how his lecture had inspired them to spend more time with loved ones, to quit pitying themselves, or even to shake off suicidal urges. Terminally ill people said the lecture had persuaded them to embrace their own goodbyes, and as Randy said, "to keep having fun every day I have left, because there's no other way to play it."
In the weeks after the talk, people translated the lecture into other languages, and posted their versions online. A university in India held a screening of the video. Hundreds of students attended and told their friends how powerful it was; hundreds more demanded a second screening a week later.
In the U.S., Randy reprised part of his talk on "The Oprah Winfrey Show." ABC News would later name him one of its three "Persons of the Year." Thousands of bloggers wrote essays celebrating him.
Randy was overwhelmed and moved by the response. Still, he retained his sense of humor. "There's a limit to how many times you can read how great you are and what an inspiration you are," he said. "But I'm not there yet."
Years ago, Jai had suggested that Randy compile his advice into a book for her and the kids. She wanted to call it "The Manual." Now, in the wake of the lecture, others were also telling Randy that he had a book in him.
He resisted at first. Yes, there were things he felt an urge to express. But given his prognosis, he wanted to spend his limited time with his family.
Then he caught a break. Palliative chemotherapy stalled the growth of his tumors. "This will be the first book to ever list the drug Gemcitabine on the acknowledgments page," he joked. But he still didn't want the book to get in the way of his last months with his kids. So he came up with a plan.
Because exercise was crucial to his health, he would ride his bicycle around his neighborhood for an hour each day. This was time he couldn't be with his kids, anyway. He and I agreed that he would wear a cellphone headset on these rides, and we'd talk about everything on his mind -- the lecture, his life, his dreams for his family.
Every day, as soon as his bike ride came to an end, so did our conversation. "Gotta go!" he'd say, and I knew he felt an aching urge (and responsibility) to return to his family life.
But the next day, he'd be back on the bike, enthusiastic about the conversation. He confided in me that since his diagnosis, he had found himself feeling saddest when he was alone, driving his car or riding his bike. So I sensed that he enjoyed my company in his ears as he pedaled.
Randy had a way of framing human experiences in his own distinctive way, mixing humor here, unexpected inspiration there, and wrapping it all in an uncommon optimism. In the three months after the lecture, he went on 53 long bike rides, and the stories he told became not just his book, but also part of his process of saying goodbye.
* * * Right now, Randy's children -- Dylan, Logan and Chloe -- are too young to understand all the things he yearns to share with them. "I want the kids to know what I've always believed in," he told me, "and all the ways in which I've come to love them."
Those who die at older ages, after their children have grown to adulthood, can find comfort in the fact that they've been a presence in their offspring's lives. "When I cry in the shower," Randy said, "I'm not usually thinking, 'I won't get to see the kids do this' or 'I won't get to see them do that.' I'm thinking about the kids not having a father. I'm focused more on what they're going to lose than on what I'm going to lose. Yes, a percentage of my sadness is, 'I won't, I won't, I won't.' But a bigger part of me grieves for them. I keep thinking, 'They won't, they won't, they won't.' "
Early on, he had vowed to do the logistical things necessary to ease his family's path into a life without him. His minister helped him think beyond estate planning and funeral arrangements. "You have life insurance, right?" the minister asked.
"Yes, it's all in place," Randy told him.
"Well, you also need emotional insurance," the minister explained. The premiums for that insurance would be paid for with Randy's time, not his money. The minister suggested that Randy spend hours making videotapes of himself with the kids. Years from now, they will be able to see how easily they touched each other and laughed together.
Knowing his kids' memories of him could be fuzzy, Randy has been doing things with them that he hopes they'll find unforgettable. For instance, he and Dylan, 6, went on a minivacation to swim with dolphins. "A kid swims with dolphins, he doesn't easily forget it," Randy said. "We took lots of photos." Randy took Logan, 3, to Disney World to meet his hero, Mickey Mouse. "I'd met him, so I could make the introduction."
Randy also made a point of talking to people who lost parents when they were very young. They told him they found it consoling to learn about how much their mothers and fathers loved them. The more they knew, the more they could still feel that love. To that end, Randy built separate lists of his memories of each child. He also has written down his advice for them, things like: "If I could only give three words of advice, they would be, 'Tell the truth.' If I got three more words, I'd add, 'All the time.' "
The advice he's leaving for Chloe includes this: "When men are romantically interested in you, it's really simple. Just ignore everything they say and only pay attention to what they do." Chloe, not yet 2 years old, may end up having no memory of her father. "But I want her to grow up knowing," Randy said, "that I was the first man ever to fall in love with her."
* * * Saying goodbye to a spouse requires more than just loving words. There are details that must be addressed.
Shortly after his terminal diagnosis, Randy and his family moved from Pittsburgh to southeastern Virginia, so that after he dies, Jai and the kids will be closer to her family for support. At first, Jai didn't even want Randy returning to Pittsburgh to give his last lecture; she thought he should be home, unpacking boxes or interacting with the kids. "Call me selfish," Jai told him, "but I want all of you. Any time you'll spend working on this lecture is lost time, because it's time away from the kids and from me."
Jai finally relented when Randy explained how much he yearned to give one last talk. "An injured lion still wants to roar," he told her.
In the months after the talk, while chemo was still keeping his tumors from growing, Randy wouldn't use the word "lucky" to describe his situation. Still, he said, "a part of me does feel fortunate that I didn't get hit by the proverbial bus." Cancer had given him the time to have vital conversations with Jai that wouldn't be possible if his fate were a heart attack or car accident.
What did they talk about?
For starters, they both tried to remember that flight attendants offer terrific caregiving advice: "Put on your own oxygen mask before assisting others."
"Jai is such a giver that she often forgets to take care of herself," Randy said. "When we become physically or emotionally run down, we can't help anybody else, least of all small children." Randy has reminded Jai that, once he's gone, she should give herself permission to make herself a priority.
Randy and Jai also talked about the fact that she will make mistakes in the years ahead, and she shouldn't attribute them all to the fact that she'll be raising the kids herself. "Mistakes are part of the process of parenting," Randy told her. "If I were able to live, we'd be making those mistakes together."
In some ways, the couple found it helpful to try to live together as if their marriage had decades to go. "We discuss, we get frustrated, we get mad, we make up," Randy said.
At the same time, given Randy's prognosis, Jai has been trying to let little stuff slide. Randy can be messy, with clothes everywhere. "Obviously, I ought to be neater," Randy said. "I owe Jai many apologies. But do we really want to spend our last months together arguing that I haven't hung up my khakis? We do not. So now Jai kicks my clothes in a corner and moves on."
A friend suggested to Jai that she keep a daily journal. She writes in there things that get on her nerves about Randy. He can be cocky, dismissive, a know-it-all. "Randy didn't put his plate in the dishwasher tonight," she wrote one night. "He just left it there on the table and went to his computer." She knew he was preoccupied, heading to the Internet to research medical treatments. Still, the dish bothered her. She wrote about it, felt better, and they didn't need to argue over it.
There are days when Jai tells Randy things, and there's little he can say in response. She has said to him: "I can't imagine rolling over in bed and you're not there." And: "I can't picture myself taking the kids on vacation and you not being with us."
Randy and Jai have gone to a therapist who specializes in counseling couples in which one spouse is terminally ill. That's been helpful. But they've still struggled. They've cried together in bed at 3 a.m., fallen back asleep, woken up at 4 a.m. and cried some more. "We've gotten through in part by focusing on the tasks at hand," Randy said. "We can't fall to pieces. We've got to get some sleep because one of us has to get up in the morning and give the kids breakfast. That person, for the record, is almost always Jai."
For Randy, part of saying goodbye is trying to remain optimistic. After his diagnosis, Randy's doctor gave him advice: "It's important to behave as if you're going to be around awhile." Randy was already way ahead of him: "Doc, I just bought a new convertible and got a vasectomy. What more do you want from me?"
In December, Randy went on a short scuba-diving vacation with three close friends. The men were all aware of the subtext; they were banding together to give Randy a farewell weekend. Still, they successfully avoided any emotional "I love you, man" dialogue related to Randy's cancer. Instead, they reminisced, horsed around and made fun of each other. (Actually, it was mostly the other guys making fun of Randy for the "St. Randy of Pittsburgh" reputation he had gotten since his lecture.) Nothing was off-limits. When Randy put on sunscreen, his friend Steve Seabolt said, "Afraid of skin cancer, Randy? That's like putting good money after bad."
Randy loved that weekend. As he later explained it: "I am maintaining my clear-eyed sense of the inevitable. I'm living like I'm dying. But at the same time, I'm very much living like I'm still living."
Since Randy's lecture began spreading on the Internet, he has heard from thousands of strangers, many offering advice on how they dealt with final goodbyes.
A woman who lost her husband to pancreatic cancer said his last speech was to a small audience: her, his children, parents and siblings. He thanked them for their guidance and love, and reminisced about places they had gone together. Another woman, whose husband died of a brain tumor, suggested that Randy talk to Jai about how she'll need to reassure their kids, as they get older, that they will have a normal life. "There will be graduations, marriages, children of their own. When a parent dies at such an early age, some children think that other normal life-cycle events may not happen for them, either."
Randy was moved by comments such as the one he received from a man with serious heart problems. The man wrote to tell Randy about Krishnamurti, a spiritual leader in India who died in 1986. Krishnamurti was once asked what was the most appropriate way to say goodbye to a man who was about to die. He answered: "Tell your friend that in his death, a part of you dies and goes with him. Wherever he goes, you also go. He will not be alone." In his email to Randy, this man was reassuring: "I know you are not alone."
* * * The chemotherapy keeping Randy alive took a toll on his body. By March, he was fighting off kidney and heart failure, along with debilitating fatigue. Still, he kept a commitment to go to Washington, D.C., to speak before Congress on behalf of the Pancreatic Cancer Action Network.
He spoke forcefully about research needed to fight pancreatic cancer, the deadliest of all the cancers, and then held up a large photo of Jai and the kids. When he pointed to Jai, he told the congressmen: "This is my widow. That's not a grammatical construction you get to use every day.... Pancreatic cancer can be beat, but it will take more courage and funding."
Randy has now stopped chemotherapy, and as he regains his strength, he hopes to begin liver-specific treatments. He is engaged in the process, but expects no miracles. He knows his road is short.
Meanwhile, I feel forever changed by my time with Randy; I saw his love of life from a front-row seat. He and I traded countless emails, and I've filed them all safely in my computer. His daily emails -- smart, funny, wise -- have brightened my inbox. I dread the day I will no longer hear from him.
Randy rarely got emotional in all his hours with me. He was brave, talking about death like a scientist. In fact, until we got to discussing what should be in the book's last chapter, he never choked up.
The last chapter, we decided, would be about the last moments of his lecture -- how he felt, what he said. He thought hard about that, and then described for me how his emotions swelled as he took a breath and prepared to deliver his closing lines. It was tough, he said, "because the end of the talk had to be a distillation of how I felt about the end of my life."
In the same way, discussing the end of the book was emotional for him. I could hear his voice cracking as we spoke. Left unsaid was the fact that this part of our journey together was ending. He no longer needed to ride his bike, wearing that headset, while I sat at my computer, tapping away, his voice in my ears. Within weeks, he had no energy to exercise.
Randy is thrilled that so many people are finding his lecture beneficial, and he hopes the book also will be a meaningful legacy for him. Still, all along, he kept reminding me that he was reaching into his heart, offering his life lessons, mostly to address an audience of three. "I'm attempting to put myself in a bottle that will one day wash up on the beach for my children," he said.
And so despite all his goodbyes, he has found solace in the idea that he'll remain a presence. "Kids, more than anything else, need to know their parents love them," he said. "Their parents don't have to be alive for that to happen."
In Cancer Therapy, There Is a Time to Treat and a Time to Let Go
By Jane E. Brody : NY Times Article : August 19, 2008
Thirty years ago Forbes Hill of Brooklyn learned he had prostate cancer. At age 50, with a young wife and a fear of the common side effects of treatment — incontinence and impotence — he chose what oncologists call “watchful waiting.” For 12 years, Mr. Hill was fine. Then in 1990 his PSA count, a measure of cancerradiation therapy. That dropped the count to near zero. In 2000, with the count up again, he chose hormone therapy, which worked for a while.
Three years ago, with his PSA level going through the roof, he learned that the cancer had spread to his bones and liver. It was time for chemotherapy, which Mr. Hill said he knew could not cure him but might slow the cancer’s progress and prolong his life.
His oncologist was candid but not very specific. His doctor told him that with advanced metastatic hormone-resistant cancer like his, 90 percent of patients die within five years no matter what the doctors do, and about 10 percent survive six or more years.
“I took that kind of hard,” said Mr. Hill, an associate professor of media studies at Queens College. “I always thought I would live to 90, but I guess now I won’t.”
He has just started radiation to the brain, perhaps with infusions of an experimental drug afterward. “I’ll try chemo for six months, but if it gets too uncomfortable and inconvenient... ,” he said, trailing off. “Having lived 80 years, I’ve done a lot. I don’t have reason to think I’ve been badly treated by life.”
Mr. Hill seems ready for a time when treating his cancer is no longer the right approach, replaced instead by a focus on preparing for the end of his life.
But doctors who have studied patients like Mr. Hill say that often they do not know when to say enough is enough. In a desperate effort to live a month, a week, even a day longer, they choose to continue costly, toxic treatments and deny themselves and their families the comfort care that hospice can provide.
Tough Decisions
Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.
“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”
The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”
With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.
Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.
“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.
The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”
In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.
Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.
And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.
It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.
Dr. Smith says that cancer treatments “have a huge price tag of up to $100,000 a patient per year,” which can impoverish even insured patients when there is a 20 percent co-pay.
He urges doctors to talk about hospice early, while treatment options are still available, and to assure patients they will not be abandoned in hospice.
Switching to Comfort Care
While there is no official definition of futile care, Dr. Smith suggests that it represents care that is “very unlikely to help and likely to harm.”
The National Comprehensive Cancer Network has established some guidelines about when to switch to comfort care. They vary according to the type of cancer and nature of available treatments, but in general they include when a patient has already been through three lines of chemotherapy or when their performance status — how well they can function in daily life — is poor.
Dr. Smith said most chemotherapy regimens had been tested only in patients who are relatively well, independently mobile and able to perform most of the tasks of daily life.
For those who are confined to a bed or a chair for half or more of the day, “it is time to think long and hard about continuing treatment,” he said. “It’s time to have an extensive discussion with patients about their goals and the risks and benefits of chemotherapy.”
He suggested that doctors “put everything in writing — here’s what you have, what we can do for it, what will happen with treatment and without it — so that everyone is on the same page,” eliminating the risk that wishful thinking colors what patients hear.
When faced with a patient who says, “I’ll do anything to live two minutes longer,” Dr. Smith said the doctor should ask: “What is your understanding of your illness? What would you like to do with the time remaining?”
For most people, he added, the time left would be far better spent putting their affairs in order, preparing their funeral or memorial service, repairing damaged relationships, leaving lasting legacies and saying their goodbyes.
- Patients and their families benefit more from hospice care if they enroll early enough to develop relationships with the hospice team and can prepare for end-of-life needs.
- Choosing hospice care does not preclude a patient from keeping a physician, choosing treatments, or withdrawing from hospice care and reinstating hospice benefits at a later time.
- Remember you are not "giving up" if you take advantage of these services early. They do a great job of transitioning patients and their families. Don't be fearful of this organization.
- Most hospice patients remain in their own homes.
- To help people make sound health care decisions and get the care they would want for themselves or their family members as life draws to a close, the National Institute on Aging has produced a comprehensive 68-page booklet, “End-of-Life: Helping With Comfort and Care.” Individual free copies can be obtained through the institute’s Web site, www.nia.nih.gov, or by calling 800-222-2225.
When the Only Hope Is a Peaceful Ending
By Jane E. Brody : NY Times : March 15, 2010
This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.” You never know when your time will be up, and so it is best to prepare for the end sooner rather than later.
On Feb. 2, we learned that my husband of 43 years had Stage 4 lung cancer. There was no asking “Why me?” Richard knew very well why. He’d been a pack-a-day smoker for 50 years. Although he quit for good more than 15 years ago, it was far too late. After a few weeks of encroaching weakness and coughing, a PET scan showed that cancer was ravaging his body, taking up residence in both lungs (along with emphysema), in his spine, his adrenal glands and his brain. It was inoperable and incurable. He was looking at weeks or months of remaining life, maybe a year at most.
Long before this diagnosis, we had discussed and written down our wishes if either of us faced such a dismal prognosis. At nearly 77, Richard felt he had already cheated the grim reaper despite his long addiction to nicotine. He wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died.
His choice — affirmed by the doctors we consulted — was for palliative treatments aimed at minimizing his pain and maximizing his function. As his health care proxy, I had long ago agreed to such a plan. Our sons and daughters-in-law knew him far too well to try to persuade him otherwise.
Treatment and Comfort
For his comfort and our convenience, we stayed with local doctors at our local hospital, New York Methodist, an affiliate of Weill Cornell Medical College. I was extraordinarily impressed with the intelligence and sensitivity of the doctors we saw: our primary care physician, whose specialty is geriatrics; the pulmonologist, who made the diagnosis and provided a pretty clear picture of what was ahead; an oncologist, who strongly recommended palliative radiation (which could, if Richard wanted it, be followed by gentle chemotherapy); a radiation oncologist, who explained how radiation could help control pain; and a neurologist, who periodically assessed his physical limitations.
We were warned of two potentially disastrous complications. Richard was already suffering from severe sciatica attributed to the spinal tumors, and we learned that these could cause permanent paralysis if they impinged on the spinal cord. The brain lesions could bleed and cause a hemorrhagic stroke. And his balance, which we realized in hindsight had been declining for months, was also at great risk from lesions in the pons, near the top of the brainstem.
And so he began three weeks of radiation to his lower spine and whole brain. For a week, though the city was blanketed by snow and his balance was iffy, he was able to walk himself with a cane to and from the hospital for treatments. But 10 days from the start of radiation, he awoke unable to walk, and the oncologist said he had to get to the hospital without delay.
The paramedics who responded to the 911 call were amazingly gentle and reassuring. A magnetic resonance imaging test of the spine and brain revealed no tumor to explain this handicap, prompting a probable diagnosis of swelling caused by the cancer, the radiation or both.
And so began a two-week hospital stay marked by increasing pain (and increasing doses of narcotics to control it), extreme weakness and constipation caused by the narcotics. Richard thought there was no point in continuing treatment; he’d never get any better or leave the hospital alive. His doctors thought otherwise and urged him to continue the radiation, along with medications to counter the swelling and constipation.
My goal, my hope, was that he would live just three more weeks and be well enough on March 26 to attend a musical celebration of his life’s work as a lyricist, at which friends and family from far and wide could say goodbye.
On the sixth morning of his hospitalization, his bowel congestion finally relieved, he awoke pain-free and cheerful and announced, half joking, “Today, I almost feel like living.” I began to breathe normally again, no small thanks to the capable and conscientious oncology nurses and nurse technicians, whose cheerful demeanor seemed able to inspire a will to live in a corpse.
A Final Journey
But this was to be only a brief reprieve. After two weeks of radiation, it became obvious that the treatments were only adding to his misery, not relieving it — every touch, every movement seemed to hurt him — and he was no longer able to get out of bed. Encouraged by my sons and their wives, who saw no point in prolonging his agony, I reluctantly abandoned my March 26 goal and arranged for hospice care.
Francine Russo put it succinctly in her excellent new book, “They’re Your Parents, Too!” (Bantam, 2010): “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.”
And so the next day, I got in the ambulance with my husband for his transfer to Calvary Hospital, a lovely, peaceful hospice whose Brooklyn campus is at Lutheran Medical Center. The hospice physician reviewed his pain medications and immediately suggested changing to a continuous morphine drip, which greatly relieved his discomfort and my gnawing distress over watching him suffer. Nothing more to worry about, no more decisions to make.
Three days later, it was apparent to all that the end was near. He had stopped eating, no longer uttered a word and slept almost all the time. Knowing that hearing is the last sense to go, we continued to talk to him, saying how much we loved him, reading the many incredible letters and e-mail messages sent by family and friends, and wishing him a peaceful end. Richard Engquist, Jane Brody's husband, died March 18.
By Jane E. Brody : NY Times : March 15, 2010
This is a very personal story of living gracefully with a fatal diagnosis. When I wrote “Jane Brody’s Guide to the Great Beyond,” I had no idea that I’d be putting its precepts into practice in my immediate family within a year of publication. But as I said in the book, “You never know.” You never know when your time will be up, and so it is best to prepare for the end sooner rather than later.
On Feb. 2, we learned that my husband of 43 years had Stage 4 lung cancer. There was no asking “Why me?” Richard knew very well why. He’d been a pack-a-day smoker for 50 years. Although he quit for good more than 15 years ago, it was far too late. After a few weeks of encroaching weakness and coughing, a PET scan showed that cancer was ravaging his body, taking up residence in both lungs (along with emphysema), in his spine, his adrenal glands and his brain. It was inoperable and incurable. He was looking at weeks or months of remaining life, maybe a year at most.
Long before this diagnosis, we had discussed and written down our wishes if either of us faced such a dismal prognosis. At nearly 77, Richard felt he had already cheated the grim reaper despite his long addiction to nicotine. He wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died.
His choice — affirmed by the doctors we consulted — was for palliative treatments aimed at minimizing his pain and maximizing his function. As his health care proxy, I had long ago agreed to such a plan. Our sons and daughters-in-law knew him far too well to try to persuade him otherwise.
Treatment and Comfort
For his comfort and our convenience, we stayed with local doctors at our local hospital, New York Methodist, an affiliate of Weill Cornell Medical College. I was extraordinarily impressed with the intelligence and sensitivity of the doctors we saw: our primary care physician, whose specialty is geriatrics; the pulmonologist, who made the diagnosis and provided a pretty clear picture of what was ahead; an oncologist, who strongly recommended palliative radiation (which could, if Richard wanted it, be followed by gentle chemotherapy); a radiation oncologist, who explained how radiation could help control pain; and a neurologist, who periodically assessed his physical limitations.
We were warned of two potentially disastrous complications. Richard was already suffering from severe sciatica attributed to the spinal tumors, and we learned that these could cause permanent paralysis if they impinged on the spinal cord. The brain lesions could bleed and cause a hemorrhagic stroke. And his balance, which we realized in hindsight had been declining for months, was also at great risk from lesions in the pons, near the top of the brainstem.
And so he began three weeks of radiation to his lower spine and whole brain. For a week, though the city was blanketed by snow and his balance was iffy, he was able to walk himself with a cane to and from the hospital for treatments. But 10 days from the start of radiation, he awoke unable to walk, and the oncologist said he had to get to the hospital without delay.
The paramedics who responded to the 911 call were amazingly gentle and reassuring. A magnetic resonance imaging test of the spine and brain revealed no tumor to explain this handicap, prompting a probable diagnosis of swelling caused by the cancer, the radiation or both.
And so began a two-week hospital stay marked by increasing pain (and increasing doses of narcotics to control it), extreme weakness and constipation caused by the narcotics. Richard thought there was no point in continuing treatment; he’d never get any better or leave the hospital alive. His doctors thought otherwise and urged him to continue the radiation, along with medications to counter the swelling and constipation.
My goal, my hope, was that he would live just three more weeks and be well enough on March 26 to attend a musical celebration of his life’s work as a lyricist, at which friends and family from far and wide could say goodbye.
On the sixth morning of his hospitalization, his bowel congestion finally relieved, he awoke pain-free and cheerful and announced, half joking, “Today, I almost feel like living.” I began to breathe normally again, no small thanks to the capable and conscientious oncology nurses and nurse technicians, whose cheerful demeanor seemed able to inspire a will to live in a corpse.
A Final Journey
But this was to be only a brief reprieve. After two weeks of radiation, it became obvious that the treatments were only adding to his misery, not relieving it — every touch, every movement seemed to hurt him — and he was no longer able to get out of bed. Encouraged by my sons and their wives, who saw no point in prolonging his agony, I reluctantly abandoned my March 26 goal and arranged for hospice care.
Francine Russo put it succinctly in her excellent new book, “They’re Your Parents, Too!” (Bantam, 2010): “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.”
And so the next day, I got in the ambulance with my husband for his transfer to Calvary Hospital, a lovely, peaceful hospice whose Brooklyn campus is at Lutheran Medical Center. The hospice physician reviewed his pain medications and immediately suggested changing to a continuous morphine drip, which greatly relieved his discomfort and my gnawing distress over watching him suffer. Nothing more to worry about, no more decisions to make.
Three days later, it was apparent to all that the end was near. He had stopped eating, no longer uttered a word and slept almost all the time. Knowing that hearing is the last sense to go, we continued to talk to him, saying how much we loved him, reading the many incredible letters and e-mail messages sent by family and friends, and wishing him a peaceful end. Richard Engquist, Jane Brody's husband, died March 18.
What Broke My Father’s Heart
By Katy Butler : NY Times Article : June 14, 2010
One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.
Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.
After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the window.
I don’t like describing what dementia did to my father — and indirectly to my mother — without telling you first that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.
Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from “The Rubaiyat of Omar Khayyam”: “Awake, my little one! Before life’s liquor in its cup be dry!” At bedtime he tucked me in, quoting “Hamlet” : “May flights of angels sing thee to thy rest!”
Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.” A century later, my mother and I had come to long for the machine in my father’s chest to fail.
Until 2001, my two brothers and I — all living in California — assumed that our parents would enjoy long, robust old ages capped by some brief, undefined final illness. Thanks to their own healthful habits and a panoply of medical advances — vaccines, antibiotics, airport defibrillators, 911 networks and the like — they weren’t likely to die prematurely of the pneumonias, influenzas and heart attacks that decimated previous generations. They walked every day. My mother practiced yoga. My father was writing a history of his birthplace, a small South African town.
In short, they were seemingly among the lucky ones for whom the American medical system, despite its fragmentation, inequity and waste, works quite well. Medicare and supplemental insurance paid for their specialists and their trusted Middletown internist, the lean, bespectacled Robert Fales, who, like them, was skeptical of medical overdoing. “I bonded with your parents, and you don’t bond with everybody,” he once told me. “It’s easier to understand someone if they just tell it like it is from their heart and their soul.”
They were also stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.
Things took their first unexpected turn on Nov. 13, 2001, when my father — then 79, pacemakerless and seemingly healthy — collapsed on my parents’ kitchen floor in Middletown, making burbling sounds. He had suffered a stroke.
He came home six weeks later permanently incapable of completing a sentence. But as I’ve said, he didn’t give up easily, and he doggedly learned again how to fasten his belt; to peck out sentences on his computer; to walk alone, one foot dragging, to the university pool for water aerobics. He never again put on a shirt without help or looked at the book he had been writing. One day he haltingly told my mother, “I don’t know who I am anymore.”
His stroke devastated two lives. The day before, my mother was an upper-middle-class housewife who practiced calligraphy in her spare time. Afterward, she was one of tens of millions of people in America, most of them women, who help care for an older family member.
Their numbers grow each day. Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the “oldest old” have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast. Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to Dr. Fales, she burst into tears. She was put on sleeping pills and antidepressants.
My father said he came to believe that she would have been better off if he had died. “She’d have weeped the weep of a widow,” he told me in his garbled, poststroke speech, on a walk we took together in the fall of 2002. “And then she would have been all right.” It was hard to tell which of them was suffering more.
As we shuffled through the fallen leaves that day, I thought of my father’s father, Ernest Butler. He was 79 when he died in 1965, before pacemakers, implanted cardiac defibrillators, stents and replacement heart valves routinely staved off death among the very old. After completing some long-unfinished chairs, he cleaned his woodshop, had a heart attack and died two days later in a plain hospital bed. As I held my dad’s soft, mottled hand, I vainly wished him a similar merciful death.
A few days before Christmas that year, after a vigorous session of water exercises, my father developed a painful inguinal (intestinal) hernia. My mother took him to Fales, who sent them to a local surgeon, who sent them to a cardiologist for a preoperative clearance. After an electrocardiogram recorded my father’s slow heartbeat — a longstanding and symptomless condition not uncommon in the very old — the cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker.
Without the device, Dr. Rogan told me later, my father could have died from cardiac arrest during surgery or perhaps within a few months. It was the second time Rogan had seen my father. The first time, about a year before, he recommended the device for the same slow heartbeat. That time, my then-competent and prestroke father expressed extreme reluctance, on the advice of Fales, who considered it overtreatment.
My father’s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state.
When Rogan suggested the pacemaker for the second time, my father was too stroke-damaged to discuss, and perhaps even to weigh, his tradeoffs. The decision fell to my mother — anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes. Dr. Fales was notified by fax.
Fales loved my parents, knew their suffering close at hand, continued to oppose a pacemaker and wasn’t alarmed by death. If he had had the chance to sit down with my parents, he could have explained that the pacemaker’s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery. But my mother never consulted Fales. And the system would have effectively penalized him if she had. Medicare would have paid him a standard office-visit rate of $54 for what would undoubtedly have been a long meeting — and nothing for phone calls to work out a plan with Rogan and the surgeon.
Medicare has made minor improvements since then, and in the House version of the health care reform bill debated last year, much better payments for such conversations were included. But after the provision was distorted as reimbursement for “death panels,” it was dropped. In my father’s case, there was only a brief informed-consent process, covering the boilerplate risks of minor surgery, handled by the general surgeon.
I believe that my father’s doctors did their best within a compartmentalized and time-pressured medical system. But in the absence of any other guiding hand, there is no doubt that economics helped shape the wider context in which doctors made decisions. Had we been at the Mayo Clinic — where doctors are salaried, medical records are electronically organized and care is coordinated by a single doctor — things might have turned out differently. But Middletown is part of the fee-for-service medical economy. Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace.
And so on Jan. 2, 2003, at Middlesex Hospital, the surgeon implanted my father’s pacemaker using local anesthetic. Medicare paid him $461 and the hospital a flat fee of about $12,000, of which an estimated $7,500 went to St. Jude Medical, the maker of the device. The hernia was fixed a few days later.
It was a case study in what primary-care doctors have long bemoaned: that Medicare rewards doctors far better for doing procedures than for assessing whether they should be done at all. The incentives for overtreatment continue, said Dr. Ted Epperly, the board chairman of the American Academy of Family Physicians, because those who profit from them — specialists, hospitals, drug companies and the medical-device manufacturers — spend money lobbying Congress and the public to keep it that way.
Last year, doctors, hospitals, drug companies, medical-equipment manufacturers and other medical professionals spent $545 million on lobbying, according to the Center for Responsive Politics. This may help explain why researchers estimate that 20 to 30 percent of Medicare’s $510 billion budget goes for unnecessary tests and treatment. Why cost-containment received short shrift in health care reform. Why physicians like Fales net an average of $173,000 a year, while noninvasive cardiologists like Rogan net about $419,000.
The system rewarded nobody for saying “no” or even “wait” — not even my frugal, intelligent, Consumer-Reports-reading mother. Medicare and supplemental insurance covered almost every penny of my father’s pacemaker. My mother was given more government-mandated consumer information when she bought a new Camry a year later.
And so my father’s electronically managed heart — now requiring frequent monitoring, paid by Medicare — became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.
Shortly after New Year’s 2003, my mother belatedly called and told me about the operations, which went off without a hitch. She didn’t call earlier, she said, because she didn’t want to worry me. My heart sank, but I said nothing. It is one thing to silently hope that your beloved father’s heart might fail. It is another to actively abet his death.
The pacemaker bought my parents two years of limbo, two of purgatory and two of hell. At first they soldiered on, with my father no better and no worse. My mother reread Jon Kabat-Zinn’s “Full Catastrophe Living,” bought a self-help book on patience and rose each morning to meditate.
In 2005, the age-related degeneration that had slowed my father’s heart attacked his eyes, lungs, bladder and bowels. Clots as narrow as a single human hair lodged in tiny blood vessels in his brain, killing clusters of neurons by depriving them of oxygen. Long partly deaf, he began losing his sight to wet macular degeneration, requiring ocular injections that cost nearly $2,000 each. A few months later, he forgot his way home from the university pool. He grew incontinent. He was collapsing physically, like an ancient, shored-up house.
In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. “The Jeff I married . . . is no longer the same person,” my mother wrote in the journal a social worker had suggested she keep. “My life is in ruins. This is horrible, and I have lasted for five years.” His pacemaker kept on ticking.
When bioethicists debate life-extending technologies, the effects on people like my mother rarely enter the calculus. But a 2007 Ohio State University study of the DNA of family caregivers of people with Alzheimer’s disease showed that the ends of their chromosomes, called telomeres, had degraded enough to reflect a four-to-eight-year shortening of lifespan. By that reckoning, every year that the pacemaker gave my irreparably damaged father took from my then-vigorous mother an equal year.
When my mother was upset, she meditated or cleaned house. When I was upset, I Googled. In 2006, I discovered that pacemakers could be deactivated without surgery. Nurses, doctors and even device salesmen had done so, usually at deathbeds. A white ceramic device, like a TV remote and shaped like the wands that children use to blow bubbles, could be placed around the hump on my father’s chest. Press a few buttons and the electrical pulses that ran down the leads to his heart would slow until they were no longer effective. My father’s heart, I learned, would probably not stop. It would just return to its old, slow rhythm. If he was lucky, he might suffer cardiac arrest and die within weeks, perhaps in his sleep. If he was unlucky, he might linger painfully for months while his lagging heart failed to suffuse his vital organs with sufficient oxygenated blood.
If we did nothing, his pacemaker would not stop for years. Like the tireless charmed brooms in Disney’s “Fantasia,” it would prompt my father’s heart to beat after he became too demented to speak, sit up or eat. It would keep his heart pulsing after he drew his last breath. If he was buried, it would send signals to his dead heart in the coffin. If he was cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.
On the Internet, I discovered that the pacemaker — somewhat like the ventilator, defibrillator and feeding tube — was first an exotic, stopgap device, used to carry a handful of patients through a brief medical crisis. Then it morphed into a battery-powered, implantable and routine treatment. When Medicare approved the pacemaker for reimbursement in 1966, the market exploded. Today pacemakers are implanted annually in more than 400,000 Americans, about 80 percent of whom are over 65. According to calculations by the Dartmouth Atlas research group using Medicare data, nearly a fifth of new recipients who receive pacemakers annually — 76,000 — are over 80. The typical patient with a cardiac device today is an elderly person suffering from at least one other severe chronic illness.
Over the years, as technology has improved, the battery life of these devices lengthened. The list of heart conditions for which they are recommended has grown. In 1984, the treatment guidelines from the American College of Cardiology declared that pacemakers were strongly recommended as “indicated” or mildly approved as “reasonable” for 56 heart conditions and “not indicated” for 31 more. By 2008, the list for which they were strongly or mildly recommended expanded to 88, with most of the increase in the lukewarm “reasonable” category.
The research backing the expansion of diagnoses was weak. Over all, only 5 percent of the positive recommendations were supported by research from multiple double-blind randomized studies, the gold standard of evidence-based medicine. And 58 percent were based on no studies at all, only a “consensus of expert opinion.” Of the 17 cardiologists who wrote the 2008 guidelines, 11 received financing from cardiac-device makers or worked at institutions receiving it. Seven, due to the extent of their financial connections, were recused from voting on the guidelines they helped write.
This pattern — a paucity of scientific support and a plethora of industry connections — holds across almost all cardiac treatments, according to the cardiologist Pierluigi Tricoci of Duke University’s Clinical Research Institute. Last year in The Journal of the American Medical Association, Tricoci and his co-authors wrote that only 11 percent of 2,700 widely used cardiac-treatment guidelines were based on that gold standard. Most were based only on expert opinion.
Experts are as vulnerable to conflicts of interest as researchers are, the authors warned, because “expert clinicians are also those who are likely to receive honoraria, speakers bureau [fees], consulting fees or research support from industry.” They called the current cardiac-research agenda “strongly influenced by industry’s natural desire to introduce new products.”
Perhaps it’s no surprise that I also discovered others puzzling over cardiologists who recommended pacemakers for relatives with advanced dementia. “78-year-old mother-in-law has dementia; severe short-term memory issues,” read an Internet post by “soninlaw” on Elderhope.com, a caregivers’ site, in 2007. “On a routine trip to her cardiologist, doctor decides she needs a pacemaker. . . . Anyone have a similar encounter?”
By the summer of 2007, my dad had forgotten the purpose of a dinner napkin and had to be coached to remove his slippers before he tried to put on his shoes. After a lifetime of promoting my father’s health, my mother reversed course. On a routine visit, she asked Rogan to deactivate the pacemaker. “It was hard,” she later told me. “I was doing for Jeff what I would have wanted Jeff to do for me.” Rogan soon made it clear he was morally opposed. “It would have been like putting a pillow over your father’s head,” he later told me.
Not long afterward, my mother declined additional medical tests and refused to put my father on a new anti-dementia drug and a blood thinner with troublesome side effects. “I take responsibility for whatever,” she wrote in her journal that summer. “Enough of all this overkill! It’s killing me! Talk about quality of life — what about mine?”
Then came the autumn day when she asked for my help, and I said yes. I told myself that we were simply trying to undo a terrible medical mistake. I reminded myself that my dad had rejected a pacemaker when his faculties were intact. I imagined, as a bioethicist had suggested, having a 15-minute conversation with my independent, predementia father in which I saw him shaking his head in horror over any further extension of what was not a “life,” but a prolonged and attenuated dying. None of it helped. I knew that once he died, I would dream of him and miss his mute, loving smiles. I wanted to melt into the arms of the father I once had and ask him to handle this. Instead, I felt as if I were signing on as his executioner and that I had no choice.
Over the next five months, my mother and I learned many things. We were told, by the Hemlock Society’s successor, Compassion and Choices, that as my father’s medical proxy, my mother had the legal right to ask for the withdrawal of any treatment and that the pacemaker was, in theory at least, a form of medical treatment. We learned that although my father’s living will requested no life support if he were comatose or dying, it said nothing about dementia and did not define a pacemaker as life support. We learned that if we called 911, emergency medical technicians would not honor my father’s do-not-resuscitate order unless he wore a state-issued orange hospital bracelet. We also learned that no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.
(Last month that changed. The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors “cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.” This came, of course, too late for us.)
In the spring of 2008, things got even worse. My father took to roaring like a lion at his caregivers. At home in California, I searched the Internet for a sympathetic cardiologist and a caregiver to put my Dad to bed at night. My frayed mother began to shout at him, and their nighttime scenes were heartbreaking and frightening. An Alzheimer’s Association support-group leader suggested that my brothers and I fly out together and institutionalize my father. This leader did not know my mother’s formidable will and had never heard her speak about her wedding vows or her love.
Meanwhile my father drifted into what nurses call “the dwindles”: not sick enough to qualify for hospice care, but sick enough to never get better. He fell repeatedly at night and my mother could not pick him up. Finally, he was weak enough to qualify for palliative care, and a team of nurses and social workers visited the house. His chest grew wheezy. My mother did not request antibiotics. In mid-April 2008, he was taken by ambulance to Middlesex Hospital’s hospice wing, suffering from pneumonia.
Pneumonia was once called “the old man’s friend” for its promise of an easy death. That’s not what I saw when I flew in. On morphine, unreachable, his eyes shut, my beloved father was breathing as hard and regularly as a machine.
My mother sat holding his hand, weeping and begging for forgiveness for her impatience. She sat by him in agony. She beseeched his doctors and nurses to increase his morphine dose and to turn off the pacemaker. It was a weekend, and the doctor on call at Rogan’s cardiology practice refused authorization, saying that my father “might die immediately.” And so came five days of hard labor. My mother and I stayed by him in shifts, while his breathing became increasingly ragged and his feet slowly started to turn blue. I began drafting an appeal to the hospital ethics committee. My brothers flew in.
On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing.
After his memorial service in the Wesleyan University chapel, I carried a box from the crematory into the woods of an old convent where he and I often walked. It was late April, overcast and cold. By the side of a stream, I opened the box, scooped out a handful of ashes and threw them into the swirling water. There were some curious spiraled metal wires, perhaps the leads of his pacemaker, mixed with the white dust and pieces of bone.
A year later, I took my mother to meet a heart surgeon in a windowless treatment room at Brigham and Women’s Hospital in Boston. She was 84, with two leaking heart valves. Her cardiologist had recommended open-heart surgery, and I was hoping to find a less invasive approach. When the surgeon asked us why we were there, my mother said, “To ask questions.” She was no longer a trusting and deferential patient. Like me, she no longer saw doctors — perhaps with the exception of Fales — as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn’t help feeling that something precious — our old faith in a doctor’s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts — had been lost.
The surgeon was forthright: without open-heart surgery, there was a 50-50 chance my mother would die within two years. If she survived the operation, she would probably live to be 90. And the risks? He shrugged. Months of recovery. A 5 percent chance of stroke. Some possibility, he acknowledged at my prompting, of postoperative cognitive decline. (More than half of heart-bypass patients suffer at least a 20 percent reduction in mental function.) My mother lifted her trouser leg to reveal an anklet of orange plastic: her do-not-resuscitate bracelet. The doctor recoiled. No, he would not operate with that bracelet in place. It would not be fair to his team. She would be revived if she collapsed. “If I have a stroke,” my mother said, nearly in tears, “I want you to let me go.” What about a minor stroke, he said — a little weakness on one side?
I kept my mouth shut. I was there to get her the information she needed and to support whatever decision she made. If she emerged from surgery intellectually damaged, I would bring her to a nursing home in California and try to care for her the way she had cared for my father at such cost to her own health. The thought terrified me.
The doctor sent her up a floor for an echocardiogram. A half-hour later, my mother came back to the waiting room and put on her black coat. “No,” she said brightly, with the clarity of purpose she had shown when she asked me to have the pacemaker deactivated. “I will not do it.”
She spent the spring and summer arranging house repairs, thinning out my father’s bookcases and throwing out the files he collected so lovingly for the book he never finished writing. She told someone that she didn’t want to leave a mess for her kids. Her chest pain worsened, and her breathlessness grew severe. “I’m aching to garden,” she wrote in her journal. “But so it goes. ACCEPT ACCEPT ACCEPT.”
Last August, she had a heart attack and returned home under hospice care. One evening a month later, another heart attack. One of my brothers followed her ambulance to the hospice wing where we had sat for days by my father’s bed. The next morning, she took off her silver earrings and told the nurses she wanted to stop eating and drinking, that she wanted to die and never go home. Death came to her an hour later, while my brother was on the phone to me in California — almost as mercifully as it had come to my paternal grandfather. She was continent and lucid to her end.
A week later, at the same crematory near Long Island Sound, my brothers and I watched through a plate-glass window as a cardboard box containing her body, dressed in a scarlet silk ao dai she had sewn herself, slid into the flames. The next day, the undertaker delivered a plastic box to the house where, for 45 of their 61 years together, my parents had loved and looked after each other, humanly and imperfectly. There were no bits of metal mixed with the fine white powder and the small pieces of her bones.
Katy Butler lives in Mill Valley, Calif., and teaches memoir writing at the Esalen Institute in Big Sur.
By Katy Butler : NY Times Article : June 14, 2010
One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.
Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.
After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the window.
I don’t like describing what dementia did to my father — and indirectly to my mother — without telling you first that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.
Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from “The Rubaiyat of Omar Khayyam”: “Awake, my little one! Before life’s liquor in its cup be dry!” At bedtime he tucked me in, quoting “Hamlet” : “May flights of angels sing thee to thy rest!”
Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.” A century later, my mother and I had come to long for the machine in my father’s chest to fail.
Until 2001, my two brothers and I — all living in California — assumed that our parents would enjoy long, robust old ages capped by some brief, undefined final illness. Thanks to their own healthful habits and a panoply of medical advances — vaccines, antibiotics, airport defibrillators, 911 networks and the like — they weren’t likely to die prematurely of the pneumonias, influenzas and heart attacks that decimated previous generations. They walked every day. My mother practiced yoga. My father was writing a history of his birthplace, a small South African town.
In short, they were seemingly among the lucky ones for whom the American medical system, despite its fragmentation, inequity and waste, works quite well. Medicare and supplemental insurance paid for their specialists and their trusted Middletown internist, the lean, bespectacled Robert Fales, who, like them, was skeptical of medical overdoing. “I bonded with your parents, and you don’t bond with everybody,” he once told me. “It’s easier to understand someone if they just tell it like it is from their heart and their soul.”
They were also stoics and religious agnostics. They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.
Things took their first unexpected turn on Nov. 13, 2001, when my father — then 79, pacemakerless and seemingly healthy — collapsed on my parents’ kitchen floor in Middletown, making burbling sounds. He had suffered a stroke.
He came home six weeks later permanently incapable of completing a sentence. But as I’ve said, he didn’t give up easily, and he doggedly learned again how to fasten his belt; to peck out sentences on his computer; to walk alone, one foot dragging, to the university pool for water aerobics. He never again put on a shirt without help or looked at the book he had been writing. One day he haltingly told my mother, “I don’t know who I am anymore.”
His stroke devastated two lives. The day before, my mother was an upper-middle-class housewife who practiced calligraphy in her spare time. Afterward, she was one of tens of millions of people in America, most of them women, who help care for an older family member.
Their numbers grow each day. Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the “oldest old” have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast. Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to Dr. Fales, she burst into tears. She was put on sleeping pills and antidepressants.
My father said he came to believe that she would have been better off if he had died. “She’d have weeped the weep of a widow,” he told me in his garbled, poststroke speech, on a walk we took together in the fall of 2002. “And then she would have been all right.” It was hard to tell which of them was suffering more.
As we shuffled through the fallen leaves that day, I thought of my father’s father, Ernest Butler. He was 79 when he died in 1965, before pacemakers, implanted cardiac defibrillators, stents and replacement heart valves routinely staved off death among the very old. After completing some long-unfinished chairs, he cleaned his woodshop, had a heart attack and died two days later in a plain hospital bed. As I held my dad’s soft, mottled hand, I vainly wished him a similar merciful death.
A few days before Christmas that year, after a vigorous session of water exercises, my father developed a painful inguinal (intestinal) hernia. My mother took him to Fales, who sent them to a local surgeon, who sent them to a cardiologist for a preoperative clearance. After an electrocardiogram recorded my father’s slow heartbeat — a longstanding and symptomless condition not uncommon in the very old — the cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker.
Without the device, Dr. Rogan told me later, my father could have died from cardiac arrest during surgery or perhaps within a few months. It was the second time Rogan had seen my father. The first time, about a year before, he recommended the device for the same slow heartbeat. That time, my then-competent and prestroke father expressed extreme reluctance, on the advice of Fales, who considered it overtreatment.
My father’s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state.
When Rogan suggested the pacemaker for the second time, my father was too stroke-damaged to discuss, and perhaps even to weigh, his tradeoffs. The decision fell to my mother — anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes. Dr. Fales was notified by fax.
Fales loved my parents, knew their suffering close at hand, continued to oppose a pacemaker and wasn’t alarmed by death. If he had had the chance to sit down with my parents, he could have explained that the pacemaker’s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery. But my mother never consulted Fales. And the system would have effectively penalized him if she had. Medicare would have paid him a standard office-visit rate of $54 for what would undoubtedly have been a long meeting — and nothing for phone calls to work out a plan with Rogan and the surgeon.
Medicare has made minor improvements since then, and in the House version of the health care reform bill debated last year, much better payments for such conversations were included. But after the provision was distorted as reimbursement for “death panels,” it was dropped. In my father’s case, there was only a brief informed-consent process, covering the boilerplate risks of minor surgery, handled by the general surgeon.
I believe that my father’s doctors did their best within a compartmentalized and time-pressured medical system. But in the absence of any other guiding hand, there is no doubt that economics helped shape the wider context in which doctors made decisions. Had we been at the Mayo Clinic — where doctors are salaried, medical records are electronically organized and care is coordinated by a single doctor — things might have turned out differently. But Middletown is part of the fee-for-service medical economy. Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace.
And so on Jan. 2, 2003, at Middlesex Hospital, the surgeon implanted my father’s pacemaker using local anesthetic. Medicare paid him $461 and the hospital a flat fee of about $12,000, of which an estimated $7,500 went to St. Jude Medical, the maker of the device. The hernia was fixed a few days later.
It was a case study in what primary-care doctors have long bemoaned: that Medicare rewards doctors far better for doing procedures than for assessing whether they should be done at all. The incentives for overtreatment continue, said Dr. Ted Epperly, the board chairman of the American Academy of Family Physicians, because those who profit from them — specialists, hospitals, drug companies and the medical-device manufacturers — spend money lobbying Congress and the public to keep it that way.
Last year, doctors, hospitals, drug companies, medical-equipment manufacturers and other medical professionals spent $545 million on lobbying, according to the Center for Responsive Politics. This may help explain why researchers estimate that 20 to 30 percent of Medicare’s $510 billion budget goes for unnecessary tests and treatment. Why cost-containment received short shrift in health care reform. Why physicians like Fales net an average of $173,000 a year, while noninvasive cardiologists like Rogan net about $419,000.
The system rewarded nobody for saying “no” or even “wait” — not even my frugal, intelligent, Consumer-Reports-reading mother. Medicare and supplemental insurance covered almost every penny of my father’s pacemaker. My mother was given more government-mandated consumer information when she bought a new Camry a year later.
And so my father’s electronically managed heart — now requiring frequent monitoring, paid by Medicare — became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits.
Shortly after New Year’s 2003, my mother belatedly called and told me about the operations, which went off without a hitch. She didn’t call earlier, she said, because she didn’t want to worry me. My heart sank, but I said nothing. It is one thing to silently hope that your beloved father’s heart might fail. It is another to actively abet his death.
The pacemaker bought my parents two years of limbo, two of purgatory and two of hell. At first they soldiered on, with my father no better and no worse. My mother reread Jon Kabat-Zinn’s “Full Catastrophe Living,” bought a self-help book on patience and rose each morning to meditate.
In 2005, the age-related degeneration that had slowed my father’s heart attacked his eyes, lungs, bladder and bowels. Clots as narrow as a single human hair lodged in tiny blood vessels in his brain, killing clusters of neurons by depriving them of oxygen. Long partly deaf, he began losing his sight to wet macular degeneration, requiring ocular injections that cost nearly $2,000 each. A few months later, he forgot his way home from the university pool. He grew incontinent. He was collapsing physically, like an ancient, shored-up house.
In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. “The Jeff I married . . . is no longer the same person,” my mother wrote in the journal a social worker had suggested she keep. “My life is in ruins. This is horrible, and I have lasted for five years.” His pacemaker kept on ticking.
When bioethicists debate life-extending technologies, the effects on people like my mother rarely enter the calculus. But a 2007 Ohio State University study of the DNA of family caregivers of people with Alzheimer’s disease showed that the ends of their chromosomes, called telomeres, had degraded enough to reflect a four-to-eight-year shortening of lifespan. By that reckoning, every year that the pacemaker gave my irreparably damaged father took from my then-vigorous mother an equal year.
When my mother was upset, she meditated or cleaned house. When I was upset, I Googled. In 2006, I discovered that pacemakers could be deactivated without surgery. Nurses, doctors and even device salesmen had done so, usually at deathbeds. A white ceramic device, like a TV remote and shaped like the wands that children use to blow bubbles, could be placed around the hump on my father’s chest. Press a few buttons and the electrical pulses that ran down the leads to his heart would slow until they were no longer effective. My father’s heart, I learned, would probably not stop. It would just return to its old, slow rhythm. If he was lucky, he might suffer cardiac arrest and die within weeks, perhaps in his sleep. If he was unlucky, he might linger painfully for months while his lagging heart failed to suffuse his vital organs with sufficient oxygenated blood.
If we did nothing, his pacemaker would not stop for years. Like the tireless charmed brooms in Disney’s “Fantasia,” it would prompt my father’s heart to beat after he became too demented to speak, sit up or eat. It would keep his heart pulsing after he drew his last breath. If he was buried, it would send signals to his dead heart in the coffin. If he was cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.
On the Internet, I discovered that the pacemaker — somewhat like the ventilator, defibrillator and feeding tube — was first an exotic, stopgap device, used to carry a handful of patients through a brief medical crisis. Then it morphed into a battery-powered, implantable and routine treatment. When Medicare approved the pacemaker for reimbursement in 1966, the market exploded. Today pacemakers are implanted annually in more than 400,000 Americans, about 80 percent of whom are over 65. According to calculations by the Dartmouth Atlas research group using Medicare data, nearly a fifth of new recipients who receive pacemakers annually — 76,000 — are over 80. The typical patient with a cardiac device today is an elderly person suffering from at least one other severe chronic illness.
Over the years, as technology has improved, the battery life of these devices lengthened. The list of heart conditions for which they are recommended has grown. In 1984, the treatment guidelines from the American College of Cardiology declared that pacemakers were strongly recommended as “indicated” or mildly approved as “reasonable” for 56 heart conditions and “not indicated” for 31 more. By 2008, the list for which they were strongly or mildly recommended expanded to 88, with most of the increase in the lukewarm “reasonable” category.
The research backing the expansion of diagnoses was weak. Over all, only 5 percent of the positive recommendations were supported by research from multiple double-blind randomized studies, the gold standard of evidence-based medicine. And 58 percent were based on no studies at all, only a “consensus of expert opinion.” Of the 17 cardiologists who wrote the 2008 guidelines, 11 received financing from cardiac-device makers or worked at institutions receiving it. Seven, due to the extent of their financial connections, were recused from voting on the guidelines they helped write.
This pattern — a paucity of scientific support and a plethora of industry connections — holds across almost all cardiac treatments, according to the cardiologist Pierluigi Tricoci of Duke University’s Clinical Research Institute. Last year in The Journal of the American Medical Association, Tricoci and his co-authors wrote that only 11 percent of 2,700 widely used cardiac-treatment guidelines were based on that gold standard. Most were based only on expert opinion.
Experts are as vulnerable to conflicts of interest as researchers are, the authors warned, because “expert clinicians are also those who are likely to receive honoraria, speakers bureau [fees], consulting fees or research support from industry.” They called the current cardiac-research agenda “strongly influenced by industry’s natural desire to introduce new products.”
Perhaps it’s no surprise that I also discovered others puzzling over cardiologists who recommended pacemakers for relatives with advanced dementia. “78-year-old mother-in-law has dementia; severe short-term memory issues,” read an Internet post by “soninlaw” on Elderhope.com, a caregivers’ site, in 2007. “On a routine trip to her cardiologist, doctor decides she needs a pacemaker. . . . Anyone have a similar encounter?”
By the summer of 2007, my dad had forgotten the purpose of a dinner napkin and had to be coached to remove his slippers before he tried to put on his shoes. After a lifetime of promoting my father’s health, my mother reversed course. On a routine visit, she asked Rogan to deactivate the pacemaker. “It was hard,” she later told me. “I was doing for Jeff what I would have wanted Jeff to do for me.” Rogan soon made it clear he was morally opposed. “It would have been like putting a pillow over your father’s head,” he later told me.
Not long afterward, my mother declined additional medical tests and refused to put my father on a new anti-dementia drug and a blood thinner with troublesome side effects. “I take responsibility for whatever,” she wrote in her journal that summer. “Enough of all this overkill! It’s killing me! Talk about quality of life — what about mine?”
Then came the autumn day when she asked for my help, and I said yes. I told myself that we were simply trying to undo a terrible medical mistake. I reminded myself that my dad had rejected a pacemaker when his faculties were intact. I imagined, as a bioethicist had suggested, having a 15-minute conversation with my independent, predementia father in which I saw him shaking his head in horror over any further extension of what was not a “life,” but a prolonged and attenuated dying. None of it helped. I knew that once he died, I would dream of him and miss his mute, loving smiles. I wanted to melt into the arms of the father I once had and ask him to handle this. Instead, I felt as if I were signing on as his executioner and that I had no choice.
Over the next five months, my mother and I learned many things. We were told, by the Hemlock Society’s successor, Compassion and Choices, that as my father’s medical proxy, my mother had the legal right to ask for the withdrawal of any treatment and that the pacemaker was, in theory at least, a form of medical treatment. We learned that although my father’s living will requested no life support if he were comatose or dying, it said nothing about dementia and did not define a pacemaker as life support. We learned that if we called 911, emergency medical technicians would not honor my father’s do-not-resuscitate order unless he wore a state-issued orange hospital bracelet. We also learned that no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.
(Last month that changed. The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors “cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.” This came, of course, too late for us.)
In the spring of 2008, things got even worse. My father took to roaring like a lion at his caregivers. At home in California, I searched the Internet for a sympathetic cardiologist and a caregiver to put my Dad to bed at night. My frayed mother began to shout at him, and their nighttime scenes were heartbreaking and frightening. An Alzheimer’s Association support-group leader suggested that my brothers and I fly out together and institutionalize my father. This leader did not know my mother’s formidable will and had never heard her speak about her wedding vows or her love.
Meanwhile my father drifted into what nurses call “the dwindles”: not sick enough to qualify for hospice care, but sick enough to never get better. He fell repeatedly at night and my mother could not pick him up. Finally, he was weak enough to qualify for palliative care, and a team of nurses and social workers visited the house. His chest grew wheezy. My mother did not request antibiotics. In mid-April 2008, he was taken by ambulance to Middlesex Hospital’s hospice wing, suffering from pneumonia.
Pneumonia was once called “the old man’s friend” for its promise of an easy death. That’s not what I saw when I flew in. On morphine, unreachable, his eyes shut, my beloved father was breathing as hard and regularly as a machine.
My mother sat holding his hand, weeping and begging for forgiveness for her impatience. She sat by him in agony. She beseeched his doctors and nurses to increase his morphine dose and to turn off the pacemaker. It was a weekend, and the doctor on call at Rogan’s cardiology practice refused authorization, saying that my father “might die immediately.” And so came five days of hard labor. My mother and I stayed by him in shifts, while his breathing became increasingly ragged and his feet slowly started to turn blue. I began drafting an appeal to the hospital ethics committee. My brothers flew in.
On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing.
After his memorial service in the Wesleyan University chapel, I carried a box from the crematory into the woods of an old convent where he and I often walked. It was late April, overcast and cold. By the side of a stream, I opened the box, scooped out a handful of ashes and threw them into the swirling water. There were some curious spiraled metal wires, perhaps the leads of his pacemaker, mixed with the white dust and pieces of bone.
A year later, I took my mother to meet a heart surgeon in a windowless treatment room at Brigham and Women’s Hospital in Boston. She was 84, with two leaking heart valves. Her cardiologist had recommended open-heart surgery, and I was hoping to find a less invasive approach. When the surgeon asked us why we were there, my mother said, “To ask questions.” She was no longer a trusting and deferential patient. Like me, she no longer saw doctors — perhaps with the exception of Fales — as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn’t help feeling that something precious — our old faith in a doctor’s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts — had been lost.
The surgeon was forthright: without open-heart surgery, there was a 50-50 chance my mother would die within two years. If she survived the operation, she would probably live to be 90. And the risks? He shrugged. Months of recovery. A 5 percent chance of stroke. Some possibility, he acknowledged at my prompting, of postoperative cognitive decline. (More than half of heart-bypass patients suffer at least a 20 percent reduction in mental function.) My mother lifted her trouser leg to reveal an anklet of orange plastic: her do-not-resuscitate bracelet. The doctor recoiled. No, he would not operate with that bracelet in place. It would not be fair to his team. She would be revived if she collapsed. “If I have a stroke,” my mother said, nearly in tears, “I want you to let me go.” What about a minor stroke, he said — a little weakness on one side?
I kept my mouth shut. I was there to get her the information she needed and to support whatever decision she made. If she emerged from surgery intellectually damaged, I would bring her to a nursing home in California and try to care for her the way she had cared for my father at such cost to her own health. The thought terrified me.
The doctor sent her up a floor for an echocardiogram. A half-hour later, my mother came back to the waiting room and put on her black coat. “No,” she said brightly, with the clarity of purpose she had shown when she asked me to have the pacemaker deactivated. “I will not do it.”
She spent the spring and summer arranging house repairs, thinning out my father’s bookcases and throwing out the files he collected so lovingly for the book he never finished writing. She told someone that she didn’t want to leave a mess for her kids. Her chest pain worsened, and her breathlessness grew severe. “I’m aching to garden,” she wrote in her journal. “But so it goes. ACCEPT ACCEPT ACCEPT.”
Last August, she had a heart attack and returned home under hospice care. One evening a month later, another heart attack. One of my brothers followed her ambulance to the hospice wing where we had sat for days by my father’s bed. The next morning, she took off her silver earrings and told the nurses she wanted to stop eating and drinking, that she wanted to die and never go home. Death came to her an hour later, while my brother was on the phone to me in California — almost as mercifully as it had come to my paternal grandfather. She was continent and lucid to her end.
A week later, at the same crematory near Long Island Sound, my brothers and I watched through a plate-glass window as a cardboard box containing her body, dressed in a scarlet silk ao dai she had sewn herself, slid into the flames. The next day, the undertaker delivered a plastic box to the house where, for 45 of their 61 years together, my parents had loved and looked after each other, humanly and imperfectly. There were no bits of metal mixed with the fine white powder and the small pieces of her bones.
Katy Butler lives in Mill Valley, Calif., and teaches memoir writing at the Esalen Institute in Big Sur.
Letting Go
What should medicine do when it can’t save your life?
by Atul Gawande : August 2, 2010 : The New Yorker
Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying.
The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June, 2007. She took Rich’s hands, and they tried to absorb what they had heard. Monopoli was thirty-four. She had never smoked, or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be O.K.,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment.” For the moment, though, they had a baby to think about.
“So Sara and I looked at each other,” Rich recalled, “and we said, ‘We don’t have cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s exciting. And we’re going to enjoy our baby.’ ” On Tuesday, at 8:55 P.M., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.
The next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux, an oncologist, met with her and her family to discuss the findings. He explained that she had a non-small cell lung cancer that had started in her left lung. Nothing she had done had brought this on. More than fifteen per cent of lung cancers—more than people realize—occur in non-smokers. Hers was advanced, having metastasized to multiple lymph nodes in her chest and its lining. The cancer was inoperable. But there were chemotherapy options, notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female non-smokers. Eighty-five per cent respond to this drug, and, Marcoux said, “some of these responses can be long-term.”
Words like “respond” and “long-term” provide a reassuring gloss on a dire reality. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on “aggressively managing” this diagnosis.
Sara was started on the Tarceva, which produced an itchy, acne-like facial rash and numbing tiredness. She also underwent a surgical procedure to drain the fluid around her lung; when the fluid kept coming back, a thoracic surgeon eventually placed a small, permanent tube in her chest, which she could drain whenever fluid accumulated and interfered with her breathing. Three weeks after the delivery, she was admitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients. She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that Tarceva targets. When Marcoux told Sara that the drug wasn’t going to work, she had an almost violent physical reaction to the news, bolting to the bathroom in mid-discussion with a sudden bout of diarrhea.
Dr. Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine. Response rates, he said, were still very good for patients on this therapy.
She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back.
Then, in October, a CT scan showed that the tumor deposits in her left lung and chest and lymph nodes had grown substantially. The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies found that it could produce markedly longer survival in some patients. In reality, however, only a small percentage of patients gained very much. On average, the drug extended survival by only two months—from eleven months to thirteen months—and that was in patients who, unlike Sara, had responded to first-line chemotherapy.
She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.
A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right; to the liver; to the lining of her abdomen; and to her spine. Time was running out.
This is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?
The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.
Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.
The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.” In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses Grant’s oral cancer took a year to kill him; and James Madison was bedridden for two years before dying of “old age.” But, as the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn’t.
Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly?
I once cared for a woman in her sixties who had severe chest and abdominal pain from a bowel obstruction that had ruptured her colon, caused her to have a heart attack, and put her into septic shock and renal failure. I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and stabilized her. After a couple of weeks, though, it was clear that she was not going to get much better. The septic shock had left her with heart and respiratory failure as well as dry gangrene of her foot, which would have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require twice-a-day cleaning and dressing for weeks in order to heal. She would not be able to eat. She would need a tracheotomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life.
She was unmarried and without children. So I sat with her sisters in the I.C.U. family room to talk about whether we should proceed with the amputation and the tracheotomy. “Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.
One Friday morning this spring, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operates. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet street in Boston’s Mattapan neighborhood.
“Hi, Lee,” Creed said when she entered the house.
“Hi, Sarah,” Cox said. She was seventy-two years old. She’d had several years of declining health due to congestive heart failure from a heart attack and pulmonary fibrosis, a progressive and irreversible lung disease. Doctors tried slowing the disease with steroids, but they didn’t work. She had cycled in and out of the hospital, each time in worse shape. Ultimately, she accepted hospice care and moved in with her niece for support. She was dependent on oxygen, and unable to do the most ordinary tasks. Just answering the door, with her thirty-foot length of oxygen tubing trailing after her, had left her winded. She stood resting for a moment, her lips pursed and her chest heaving.
Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking her how she had been doing. Then she asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with bowel movements or urination or walking?
She did have some new troubles. When she walked from the bedroom to the bathroom, she said, it now took at least five minutes to catch her breath, and that frightened her. She was also getting chest pain. Creed pulled a stethoscope and a blood-pressure cuff from her medical bag. Cox’s blood pressure was acceptable, but her heart rate was high. Creed listened to her heart, which had a normal rhythm, and to her lungs, hearing the fine crackles of her pulmonary fibrosis but also a new wheeze. Her ankles were swollen with fluid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of the neatly made bed was filled and working properly. The nebulizer equipment for her inhaler treatments, however, was broken.
Given the lack of heart medication and inhaler treatments, it was no wonder that she had worsened. Creed called Cox’s pharmacy to confirm that her refills had been waiting, and had her arrange for her niece to pick up the medicine when she came home from work. Creed also called the nebulizer supplier for same-day emergency service.
She then chatted with Cox in the kitchen for a few minutes. Her spirits were low. Creed took her hand. Everything was going to be all right, she said. She reminded her about the good days she’d had—the previous weekend, for example, when she’d been able to go out with her portable oxygen cylinder to shop with her niece and get her hair colored.
I asked Cox about her previous life. She had made radios in a Boston factory. She and her husband had two children, and several grandchildren.
When I asked her why she had chosen hospice care, she looked downcast. “The lung doctor and heart doctor said they couldn’t help me anymore,” she said. Creed glared at me. My questions had made Cox sad again.
“It’s good to have my niece and her husband helping to watch me every day,” she said. “But it’s not my home. I feel like I’m in the way.”
Creed gave her a hug before we left, and one last reminder. “What do you do if you have chest pain that doesn’t go away?” she asked.
“Take a nitro,” Cox said, referring to the nitroglycerin pill that she can slip under her tongue.
“And?”
“Call you.”
“Where’s the number?”
She pointed to the twenty-four-hour hospice call number that was taped beside her phone.
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?
“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Creed enters people’s lives at a strange moment—when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. “Ninety-nine per cent understand they’re dying, but one hundred per cent hope they’re not,” she says. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”
That was how she started with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston firefighters. They had a three-year-old daughter. He had pancreatic cancer, which had spread; his upper abdomen was now solid with tumor. During the past few months, the pain had become unbearable at times, and he was admitted to the hospital several times for pain crises. At his most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for this problem. The medical team started him on intravenous nutrition and offered him a choice between going to the intensive-care unit and going home with hospice. He chose to go home.
“I wish we’d gotten involved sooner,” Creed told me. When she and the hospice’s supervising doctor, Dr. JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.
They got to work. They set up a pain pump with a button that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable. She was determined to take care of her husband to the end, and, perhaps because she was a firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the I.V. lines and the bed linens to orchestrating family members to lend a hand when she needed help.
Creed arranged for a specialized “comfort pack” to be delivered by FedEx and stored in a mini-refrigerator by Dave’s bed. It contained a dose of morphine for breakthrough pain or shortness of breath, Ativan for anxiety attacks, Compazine for nausea, Haldol for delirium, Tylenol for fever, and atropine for drying up the upper-airway rattle that people can get in their final hours. If any such problem developed, Sharon was instructed to call the twenty-four-hour hospice nurse on duty, who would provide instructions about which rescue medications to use and, if necessary, come out to help.
Dave and Sharon were finally able to sleep through the night at home. Creed or another nurse came to see him every day, sometimes twice a day; three times that week, Sharon used the emergency hospice line to help her deal with Dave’s pain crises or hallucinations. After a few days, they were even able to go out to a favorite restaurant; he wasn’t hungry, but they enjoyed just being there, and the memories it stirred.
The hardest part so far, Sharon said, was deciding to forgo the two-litre intravenous feedings that Dave had been receiving each day. Although they were his only source of calories, the hospice staff encouraged discontinuing them because his body did not seem to be absorbing the nutrition. The infusion of sugars, proteins, and fats made the painful swelling of his skin and his shortness of breath worse—and for what? The mantra was live for now. Sharon had balked, for fear that she’d be starving him. The night before our visit, however, she and Dave decided to try going without the infusion. By morning, the swelling was markedly reduced. He could move more, and with less discomfort. He also began to eat a few morsels of food, just for the taste of it, and that made Sharon feel better about the decision.
When we arrived, Dave was making his way back to bed after a shower, his arm around his wife’s shoulders and his slippered feet taking one shuffling step at a time.
“There’s nothing he likes better than a long hot shower,” Sharon said. “He’d live in the shower if he could.”
Dave sat on the edge of his bed in fresh pajamas, catching his breath, and then Creed spoke to him as his daughter, Ashlee, ran in and out of the room in her beaded pigtails, depositing stuffed animals in her dad’s lap.
“How’s your pain on a scale of one to ten?” Creed asked.
“A six,” he said.
“Did you hit the pump?”
He didn’t answer for a moment. “I’m reluctant,” he admitted.
“Why?” Creed asked.
“It feels like defeat,” he said.
“Defeat?”
“I don’t want to become a drug addict,” he explained. “I don’t want to need this.”
Creed got down on her knees in front of him. “Dave, I don’t know anyone who can manage this kind of pain without the medication,” she said. “It’s not defeat. You’ve got a beautiful wife and daughter, and you’re not going to be able to enjoy them with the pain.”
“You’re right about that,” he said, looking at Ashlee as she gave him a little horse. And he pressed the button.
Dave Galloway died one week later—at home, at peace, and surrounded by family. A week after that, Lee Cox died, too. But, as if to show just how resistant to formula human lives are, Cox had never reconciled herself to the incurability of her illnesses. So when her family found her in cardiac arrest one morning they followed her wishes and called 911 instead of the hospice service. The emergency medical technicians and firefighters and police rushed in. They pulled off her clothes and pumped her chest, put a tube in her airway and forced oxygen into her lungs, and tried to see if they could shock her heart back. But such efforts rarely succeed with terminal patients, and they did not succeed with her.
Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.
Just before Thanksgiving of 2007, Sara Monopoli, her husband, Rich, and her mother, Dawn Thomas, met with Dr. Marcoux to discuss the options she had left. By this point, Sara had undergone three rounds of chemotherapy with limited, if any, effect. Perhaps Marcoux could have discussed what she most wanted as death neared and how best to achieve those wishes. But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying.
Recently, I spoke to Sara’s husband and her parents. Sara knew that her disease was incurable, they pointed out. The week after she was given the diagnosis and delivered her baby, she spelled out her wishes for Vivian’s upbringing after she was gone. She had told her family on several occasions that she did not want to die in the hospital. She wanted to spend her final moments peacefully at home. But the prospect that those moments might be coming soon, that there might be no way to slow the disease, “was not something she or I wanted to discuss,” her mother said.
Her father, Gary, and her twin sister, Emily, still held out hope for a cure. The doctors simply weren’t looking hard enough, they felt. “I just couldn’t believe there wasn’t something,” Gary said. For Rich, the experience of Sara’s illness had been disorienting: “We had a baby. We were young. And this was so shocking and so odd. We never discussed stopping treatment.”
Marcoux took the measure of the room. With almost two decades of experience treating lung cancer, he had been through many of these conversations. He has a calm, reassuring air and a native Minnesotan’s tendency to avoid confrontation or overintimacy. He tries to be scientific about decisions.
“I know that the vast majority of my patients are going to die of their disease,” he told me. The data show that, after failure of second-line chemotherapy, lung-cancer patients rarely get any added survival time from further treatments and often suffer significant side effects. But he, too, has his hopes.
He told them that, at some point, “supportive care” was an option for them to think about. But, he went on, there were also experimental therapies. He told them about several that were under trial. The most promising was a Pfizer drug that targeted one of the mutations found in her cancer’s cells. Sara and her family instantly pinned their hopes on it. The drug was so new that it didn’t even have a name, just a number—PF0231006—and this made it all the more enticing.
There were a few hovering issues, including the fact that the scientists didn’t yet know the safe dose. The drug was only in a Phase I trial—that is, a trial designed to determine the toxicity of a range of doses, not whether the drug worked. Furthermore, a test of the drug against her cancer cells in a petri dish showed no effect. But Marcoux didn’t think that these were decisive obstacles—just negatives. The critical problem was that the rules of the trial excluded Sara because of the pulmonary embolism she had developed that summer. To enroll, she would need to wait two months, in order to get far enough past the episode. In the meantime, he suggested trying another conventional chemotherapy, called Navelbine. Sara began the treatment the Monday after Thanksgiving.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
I asked Marcoux what he hopes to accomplish for terminal lung-cancer patients when they first come to see him. “I’m thinking, Can I get them a pretty good year or two out of this?” he said. “Those are my expectations. For me, the long tail for a patient like her is three to four years.” But this is not what people want to hear. “They’re thinking ten to twenty years. You hear that time and time again. And I’d be the same way if I were in their shoes.”
You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.
Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than forty per cent of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—“the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux wasn’t the only one avoiding that conversation with her. I was, too.
Earlier that summer, a PET scan had revealed that, in addition to her lung cancer, she also had thyroid cancer, which had spread to the lymph nodes of her neck, and I was called in to decide whether to operate. This second, unrelated cancer was in fact operable. But thyroid cancers take years to become lethal. Her lung cancer would almost certainly end her life long before her thyroid cancer caused any trouble. Given the extent of the surgery that would have been required, and the potential complications, the best course was to do nothing. But explaining my reasoning to Sara meant confronting the mortality of her lung cancer, something that I felt ill prepared to do.
Sitting in my clinic, Sara did not seem discouraged by the discovery of this second cancer. She seemed determined. She’d read about the good outcomes from thyroid-cancer treatment. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I wondered, and she proved to be that miracle patient who survived metastatic lung cancer?
My solution was to avoid the subject altogether. I told Sara that the thyroid cancer was slow-growing and treatable. The priority was her lung cancer, I said. Let’s not hold up the treatment for that. We could monitor the thyroid cancer and plan surgery in a few months.
I saw her every six weeks, and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out of her eyes. She’d find small things to laugh about, like the tubes that created strange protuberances under her dress. She was ready to try anything, and I found myself focussing on the news about experimental therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.
Between the lung cancer and the chemo, Sara became steadily sicker. She slept most of the time and could do little out of the house. Clinic notes from December describe shortness of breath, dry heaves, coughing up blood, severe fatigue. In addition to the drainage tubes in her chest, she required needle-drainage procedures in her abdomen every week or two to relieve the severe pressure from the litres of fluid that the cancer was producing there.
A CT scan in December showed that the lung cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably. Her lower body had become swollen. She couldn’t speak more than a sentence without pausing for breath. By the first week of February, she needed oxygen at home to breathe. Enough time had elapsed since her pulmonary embolism, however, that she could start on Pfizer’s experimental drug. She just needed one more set of scans for clearance. These revealed that the cancer had spread to her brain, with at least nine metastatic growths across both hemispheres. The experimental drug was not designed to cross the blood-brain barrier. PF0231006 was not going to work.
And still Sara, her family, and her medical team remained in battle mode. Within twenty-four hours, Sara was scheduled to see a radiation oncologist for whole-brain radiation to try to reduce the metastases. On February 12th, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall. She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands.
“Why didn’t you tell anyone?” he asked her.
“I just didn’t want to stop treatment,” she said. “They would make me stop.”
She was given two weeks to recover her strength after the radiation. Then she would be put on another experimental drug from a small biotech company. She was scheduled to start on February 25th. Her chances were rapidly dwindling. But who was to say they were zero?
In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message,” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. “The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves.
Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.
“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
For Sara, there would be no miraculous recovery, and, when the end approached, neither she nor her family was prepared. “I always wanted to respect her request to die peacefully at home,” Rich later told me. “But I didn’t believe we could make it happen. I didn’t know how.”
On the morning of Friday, February 22nd, three days before she was to start her new round of chemo, Rich awoke to find his wife sitting upright beside him, pitched forward on her arms, eyes wide, struggling for air. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her nasal tubing, but she got no better.
“I can’t do this,” she said, pausing between each word. “I’m scared.”
He had no emergency kit in the refrigerator. No hospice nurse to call. And how was he to know whether this new development was fixable?
We’ll go to the hospital, he told her. When he asked if they should drive, she shook her head, so he called 911, and told her mother, Dawn, who was in the next room, what was going on. A few minutes later, firemen swarmed up the stairs to her bedroom, sirens wailing outside. As they lifted Sara into the ambulance on a stretcher, Dawn came out in tears.
“We’re going to get ahold of this,” Rich told her. This was just another trip to the hospital, he said to himself. The doctors would figure this out.
At the hospital, Sara was diagnosed with pneumonia. That troubled the family, because they thought they’d done everything to keep infection at bay. They’d washed hands scrupulously, limited visits by people with young children, even limited Sara’s time with baby Vivian if she showed the slightest sign of a runny nose. But Sara’s immune system and her ability to clear her lung secretions had been steadily weakened by the rounds of radiation and chemotherapy as well as by the cancer.
In another way, the diagnosis of pneumonia was reassuring, because it was just an infection. It could be treated. The medical team started Sara on intravenous antibiotics and high-flow oxygen through a mask. The family gathered at her bedside, hoping for the antibiotics to work. This could be reversible, they told one another. But that night and the next morning her breathing only grew more labored.
“I can’t think of a single funny thing to say,” Emily told Sara as their parents looked on.
“Neither can I,” Sara murmured. Only later did the family realize that those were the last words they would ever hear from her. After that, she began to drift in and out of consciousness. The medical team had only one option left: to put her on a ventilator. Sara was a fighter, right? And the next step for fighters was to escalate to intensive care.
This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
This was stunning, and puzzling: it wasn’t obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients, the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
Can mere discussions really do so much? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.
I spoke to Dr. Gregory Thompson, a critical-care specialist at Gundersen Lutheran Hospital, while he was on I.C.U. duty one recent evening, and he ran through his list of patients with me. In most respects, the patients were like those found in any I.C.U.—terribly sick and living through the most perilous days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his mid-sixties with a ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in other I.C.U.s I’d seen: none had a terminal disease; none battled the final stages of metastatic cancer or untreatable heart failure or dementia.
To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get physicians and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted-living facility to complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions. Having this system in place, Thompson said, has made his job vastly easier. But it’s not because the specifics are spelled out for him every time a sick patient arrives in his unit.
“These things are not laid out in stone,” he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. “But, instead of having the discussion when they get to the I.C.U., we find many times it has already taken place.”
Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease. But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. When wishes aren’t clear, Thompson said, “families have also become much more receptive to having the discussion.” The discussion, not the list, was what mattered most. Discussion had brought La Crosse’s end-of-life costs down to just over half the national average. It was that simple—and that complicated.
One Saturday morning last winter, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.
Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was. But then I remembered how timid I’d been with Sara Monopoli, and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add. “Chemotherapy can be very effective in these situations.”
She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”
I flinched. “No, no,” I said. “Of course not.”
A few days later, I tried again. “We don’t have a cure,” I explained. “But treatment can hold the disease down for a long time.” The goal, I said, was to “prolong your life” as much as possible.
I’ve seen her regularly in the months since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very fondly. “That one phrase that you used—‘prolong your life’—it just . . .” She didn’t want to sound critical.
“It was kind of blunt,” her husband said.
“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.
I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”
One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.
The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”
Block has a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.
Ten years ago, her seventy-four-year-old father, Jack Block, a professor emeritus of psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass growing in the spinal cord of his neck. She flew out to see him. The neurosurgeon said that the procedure to remove the mass carried a twenty-per-cent chance of leaving him quadriplegic, paralyzed from the neck down. But without it he had a hundred-per-cent chance of becoming quadriplegic.
The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’ ” He’d made her his health-care proxy, but they had talked about such situations only superficially. So she turned the car around.
Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’
“I would never have expected him to say that,” Block went on. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that, in order to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?
“I had three minutes to make this decision, and, I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the O.K. to take him back to the operating room.
“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment, because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he survived only to go through what proved to be a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. This past year, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, this past January, he decided to stop the battle and go home.
“We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.”
Susan Block and her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or travelling or enjoying chocolate ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.
I spoke to an oncologist who told me about a twenty-nine-year-old patient she had recently cared for who had an inoperable brain tumor that continued to grow through second-line chemotherapy. The patient elected not to attempt any further chemotherapy, but getting to that decision required hours of discussion—for this was not the decision he had expected to make. First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was frank. She told him that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor. She had looked for experimental therapies, and none were truly promising. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family.
He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. And then, gradually, he began to ask about what would happen as the tumor got bigger, the symptoms he’d have, the ways they could try to control them, how the end might come.
The oncologist next met with the young man together with his family. That discussion didn’t go so well. He had a wife and small children, and at first his wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed, she understood. It was the same with his mother, who was a nurse. Meanwhile, his father sat quietly and said nothing the entire time.
A few days later, the patient returned to talk to the oncologist. “There should be something. There must be something,” he said. His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.
The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it.
The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they’d ever spent.
Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.
Sara Monopoli had had enough discussions to let her family and her oncologist know that she did not want hospitals or I.C.U.s at the end—but not enough to have learned how to achieve this. From the moment she arrived in the emergency room that Friday morning in February, the train of events ran against a peaceful ending. There was one person who was disturbed by this, though, and who finally decided to intercede—Chuck Morris, her primary physician. As her illness had progressed through the previous year, he had left the decision-making largely to Sara, her family, and the oncology team. Still, he had seen her and her husband regularly, and listened to their concerns. That desperate morning, Morris was the one person Rich called before getting into the ambulance. He headed to the emergency room and met Sara and Rich when they arrived.
Morris said that the pneumonia might be treatable. But, he told Rich, “I’m worried this is it. I’m really worried about her.” And he told him to let the family know that he said so.
Upstairs in her hospital room, Morris talked with Sara and Rich about the ways in which the cancer had been weakening her, making it hard for her body to fight off infection. Even if the antibiotics halted the infection, he said, he wanted them to remember that there was nothing that would stop the cancer.
Sara looked ghastly, Morris told me. “She was so short of breath. It was uncomfortable to watch. I still remember the attending”—the oncologist who admitted her for the pneumonia treatment. “He was actually kind of rattled about the whole case, and for him to be rattled is saying something.”
After her parents arrived, Morris talked with them, too, and when they were finished Sara and her family agreed on a plan. The medical team would continue the antibiotics. But if things got worse they would not put her on a breathing machine. They also let him call the palliative-care team to visit. The team prescribed a small dose of morphine, which immediately eased her breathing. Her family saw how much her suffering diminished, and suddenly they didn’t want any more suffering. The next morning, they were the ones to hold back the medical team.
“They wanted to put a catheter in her, do this other stuff to her,” her mother, Dawn, told me. “I said, ‘No. You aren’t going to do anything to her.’ I didn’t care if she wet her bed. They wanted to do lab tests, blood-pressure measurements, finger sticks. I was very uninterested in their bookkeeping. I went over to see the head nurse and told them to stop.”
In the previous three months, almost nothing we’d done to Sara—none of our chemotherapy and scans and tests and radiation—had likely achieved anything except to make her worse. She may well have lived longer without any of it. At least she was spared at the very end.
That day, Sara fell into unconsciousness as her body continued to fail. Through the next night, Rich recalled, “there was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”
Her father and her sister still thought that she might rally. But when the others had stepped out of the room, Rich knelt down weeping beside Sara and whispered in her ear. “It’s O.K. to let go,” he said. “You don’t have to fight anymore. I will see you soon.”
Later that morning, her breathing changed, slowing. At 9:45 A.M., Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.” ♦
What should medicine do when it can’t save your life?
by Atul Gawande : August 2, 2010 : The New Yorker
Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying.
The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June, 2007. She took Rich’s hands, and they tried to absorb what they had heard. Monopoli was thirty-four. She had never smoked, or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be O.K.,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment.” For the moment, though, they had a baby to think about.
“So Sara and I looked at each other,” Rich recalled, “and we said, ‘We don’t have cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s exciting. And we’re going to enjoy our baby.’ ” On Tuesday, at 8:55 P.M., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was perfectly healthy.
The next day, Sara underwent blood tests and body scans. Dr. Paul Marcoux, an oncologist, met with her and her family to discuss the findings. He explained that she had a non-small cell lung cancer that had started in her left lung. Nothing she had done had brought this on. More than fifteen per cent of lung cancers—more than people realize—occur in non-smokers. Hers was advanced, having metastasized to multiple lymph nodes in her chest and its lining. The cancer was inoperable. But there were chemotherapy options, notably a relatively new drug called Tarceva, which targets a gene mutation commonly found in lung cancers of female non-smokers. Eighty-five per cent respond to this drug, and, Marcoux said, “some of these responses can be long-term.”
Words like “respond” and “long-term” provide a reassuring gloss on a dire reality. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on “aggressively managing” this diagnosis.
Sara was started on the Tarceva, which produced an itchy, acne-like facial rash and numbing tiredness. She also underwent a surgical procedure to drain the fluid around her lung; when the fluid kept coming back, a thoracic surgeon eventually placed a small, permanent tube in her chest, which she could drain whenever fluid accumulated and interfered with her breathing. Three weeks after the delivery, she was admitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients. She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that Tarceva targets. When Marcoux told Sara that the drug wasn’t going to work, she had an almost violent physical reaction to the news, bolting to the bathroom in mid-discussion with a sudden bout of diarrhea.
Dr. Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine. Response rates, he said, were still very good for patients on this therapy.
She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back.
Then, in October, a CT scan showed that the tumor deposits in her left lung and chest and lymph nodes had grown substantially. The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies found that it could produce markedly longer survival in some patients. In reality, however, only a small percentage of patients gained very much. On average, the drug extended survival by only two months—from eleven months to thirteen months—and that was in patients who, unlike Sara, had responded to first-line chemotherapy.
She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.
A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right; to the liver; to the lining of her abdomen; and to her spine. Time was running out.
This is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?
The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.
Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.
The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.” In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, 1799, that killed him by the next evening. John Quincy Adams, Millard Fillmore, and Andrew Johnson all succumbed to strokes, and died within two days. Rutherford Hayes had a heart attack and died three days later. Some deadly illnesses took a longer course: James Monroe and Andrew Jackson died from the months-long consumptive process of what appears to have been tuberculosis; Ulysses Grant’s oral cancer took a year to kill him; and James Madison was bedridden for two years before dying of “old age.” But, as the end-of-life researcher Joanne Lynn has observed, people usually experienced life-threatening illness the way they experienced bad weather—as something that struck with little warning—and you either got through it or you didn’t.
Dying used to be accompanied by a prescribed set of customs. Guides to ars moriendi, the art of dying, were extraordinarily popular; a 1415 medieval Latin text was reprinted in more than a hundred editions across Europe. Reaffirming one’s faith, repenting one’s sins, and letting go of one’s worldly possessions and desires were crucial, and the guides provided families with prayers and questions for the dying in order to put them in the right frame of mind during their final hours. Last words came to hold a particular place of reverence.
These days, swift catastrophic illness is the exception; for most people, death comes only after long medical struggle with an incurable condition—advanced cancer, progressive organ failure (usually the heart, kidney, or liver), or the multiple debilities of very old age. In all such cases, death is certain, but the timing isn’t. So everyone struggles with this uncertainty—with how, and when, to accept that the battle is lost. As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are? Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly?
I once cared for a woman in her sixties who had severe chest and abdominal pain from a bowel obstruction that had ruptured her colon, caused her to have a heart attack, and put her into septic shock and renal failure. I performed an emergency operation to remove the damaged length of colon and give her a colostomy. A cardiologist stented her coronary arteries. We put her on dialysis, a ventilator, and intravenous feeding, and stabilized her. After a couple of weeks, though, it was clear that she was not going to get much better. The septic shock had left her with heart and respiratory failure as well as dry gangrene of her foot, which would have to be amputated. She had a large, open abdominal wound with leaking bowel contents, which would require twice-a-day cleaning and dressing for weeks in order to heal. She would not be able to eat. She would need a tracheotomy. Her kidneys were gone, and she would have to spend three days a week on a dialysis machine for the rest of her life.
She was unmarried and without children. So I sat with her sisters in the I.C.U. family room to talk about whether we should proceed with the amputation and the tracheotomy. “Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.
One Friday morning this spring, I went on patient rounds with Sarah Creed, a nurse with the hospice service that my hospital system operates. I didn’t know much about hospice. I knew that it specialized in providing “comfort care” for the terminally ill, sometimes in special facilities, though nowadays usually at home. I knew that, in order for a patient of mine to be eligible, I had to write a note certifying that he or she had a life expectancy of less than six months. And I knew few patients who had chosen it, except maybe in their very last few days, because they had to sign a form indicating that they understood their disease was incurable and that they were giving up on medical care to stop it. The picture I had of hospice was of a morphine drip. It was not of this brown-haired and blue-eyed former I.C.U. nurse with a stethoscope, knocking on Lee Cox’s door on a quiet street in Boston’s Mattapan neighborhood.
“Hi, Lee,” Creed said when she entered the house.
“Hi, Sarah,” Cox said. She was seventy-two years old. She’d had several years of declining health due to congestive heart failure from a heart attack and pulmonary fibrosis, a progressive and irreversible lung disease. Doctors tried slowing the disease with steroids, but they didn’t work. She had cycled in and out of the hospital, each time in worse shape. Ultimately, she accepted hospice care and moved in with her niece for support. She was dependent on oxygen, and unable to do the most ordinary tasks. Just answering the door, with her thirty-foot length of oxygen tubing trailing after her, had left her winded. She stood resting for a moment, her lips pursed and her chest heaving.
Creed took Cox’s arm gently as we walked to the kitchen to sit down, asking her how she had been doing. Then she asked a series of questions, targeting issues that tend to arise in patients with terminal illness. Did Cox have pain? How was her appetite, thirst, sleeping? Any trouble with confusion, anxiety, or restlessness? Had her shortness of breath grown worse? Was there chest pain or heart palpitations? Abdominal discomfort? Trouble with bowel movements or urination or walking?
She did have some new troubles. When she walked from the bedroom to the bathroom, she said, it now took at least five minutes to catch her breath, and that frightened her. She was also getting chest pain. Creed pulled a stethoscope and a blood-pressure cuff from her medical bag. Cox’s blood pressure was acceptable, but her heart rate was high. Creed listened to her heart, which had a normal rhythm, and to her lungs, hearing the fine crackles of her pulmonary fibrosis but also a new wheeze. Her ankles were swollen with fluid, and when Creed asked for her pillbox she saw that Cox was out of her heart medication. She asked to see Cox’s oxygen equipment. The liquid-oxygen cylinder at the foot of the neatly made bed was filled and working properly. The nebulizer equipment for her inhaler treatments, however, was broken.
Given the lack of heart medication and inhaler treatments, it was no wonder that she had worsened. Creed called Cox’s pharmacy to confirm that her refills had been waiting, and had her arrange for her niece to pick up the medicine when she came home from work. Creed also called the nebulizer supplier for same-day emergency service.
She then chatted with Cox in the kitchen for a few minutes. Her spirits were low. Creed took her hand. Everything was going to be all right, she said. She reminded her about the good days she’d had—the previous weekend, for example, when she’d been able to go out with her portable oxygen cylinder to shop with her niece and get her hair colored.
I asked Cox about her previous life. She had made radios in a Boston factory. She and her husband had two children, and several grandchildren.
When I asked her why she had chosen hospice care, she looked downcast. “The lung doctor and heart doctor said they couldn’t help me anymore,” she said. Creed glared at me. My questions had made Cox sad again.
“It’s good to have my niece and her husband helping to watch me every day,” she said. “But it’s not my home. I feel like I’m in the way.”
Creed gave her a hug before we left, and one last reminder. “What do you do if you have chest pain that doesn’t go away?” she asked.
“Take a nitro,” Cox said, referring to the nitroglycerin pill that she can slip under her tongue.
“And?”
“Call you.”
“Where’s the number?”
She pointed to the twenty-four-hour hospice call number that was taped beside her phone.
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?
“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Creed enters people’s lives at a strange moment—when they have understood that they have a fatal illness but have not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” she said. When she first encounters her patients, many feel that they have simply been abandoned by their doctors. “Ninety-nine per cent understand they’re dying, but one hundred per cent hope they’re not,” she says. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’ ”
That was how she started with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston firefighters. They had a three-year-old daughter. He had pancreatic cancer, which had spread; his upper abdomen was now solid with tumor. During the past few months, the pain had become unbearable at times, and he was admitted to the hospital several times for pain crises. At his most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for this problem. The medical team started him on intravenous nutrition and offered him a choice between going to the intensive-care unit and going home with hospice. He chose to go home.
“I wish we’d gotten involved sooner,” Creed told me. When she and the hospice’s supervising doctor, Dr. JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.
They got to work. They set up a pain pump with a button that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable. She was determined to take care of her husband to the end, and, perhaps because she was a firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the I.V. lines and the bed linens to orchestrating family members to lend a hand when she needed help.
Creed arranged for a specialized “comfort pack” to be delivered by FedEx and stored in a mini-refrigerator by Dave’s bed. It contained a dose of morphine for breakthrough pain or shortness of breath, Ativan for anxiety attacks, Compazine for nausea, Haldol for delirium, Tylenol for fever, and atropine for drying up the upper-airway rattle that people can get in their final hours. If any such problem developed, Sharon was instructed to call the twenty-four-hour hospice nurse on duty, who would provide instructions about which rescue medications to use and, if necessary, come out to help.
Dave and Sharon were finally able to sleep through the night at home. Creed or another nurse came to see him every day, sometimes twice a day; three times that week, Sharon used the emergency hospice line to help her deal with Dave’s pain crises or hallucinations. After a few days, they were even able to go out to a favorite restaurant; he wasn’t hungry, but they enjoyed just being there, and the memories it stirred.
The hardest part so far, Sharon said, was deciding to forgo the two-litre intravenous feedings that Dave had been receiving each day. Although they were his only source of calories, the hospice staff encouraged discontinuing them because his body did not seem to be absorbing the nutrition. The infusion of sugars, proteins, and fats made the painful swelling of his skin and his shortness of breath worse—and for what? The mantra was live for now. Sharon had balked, for fear that she’d be starving him. The night before our visit, however, she and Dave decided to try going without the infusion. By morning, the swelling was markedly reduced. He could move more, and with less discomfort. He also began to eat a few morsels of food, just for the taste of it, and that made Sharon feel better about the decision.
When we arrived, Dave was making his way back to bed after a shower, his arm around his wife’s shoulders and his slippered feet taking one shuffling step at a time.
“There’s nothing he likes better than a long hot shower,” Sharon said. “He’d live in the shower if he could.”
Dave sat on the edge of his bed in fresh pajamas, catching his breath, and then Creed spoke to him as his daughter, Ashlee, ran in and out of the room in her beaded pigtails, depositing stuffed animals in her dad’s lap.
“How’s your pain on a scale of one to ten?” Creed asked.
“A six,” he said.
“Did you hit the pump?”
He didn’t answer for a moment. “I’m reluctant,” he admitted.
“Why?” Creed asked.
“It feels like defeat,” he said.
“Defeat?”
“I don’t want to become a drug addict,” he explained. “I don’t want to need this.”
Creed got down on her knees in front of him. “Dave, I don’t know anyone who can manage this kind of pain without the medication,” she said. “It’s not defeat. You’ve got a beautiful wife and daughter, and you’re not going to be able to enjoy them with the pain.”
“You’re right about that,” he said, looking at Ashlee as she gave him a little horse. And he pressed the button.
Dave Galloway died one week later—at home, at peace, and surrounded by family. A week after that, Lee Cox died, too. But, as if to show just how resistant to formula human lives are, Cox had never reconciled herself to the incurability of her illnesses. So when her family found her in cardiac arrest one morning they followed her wishes and called 911 instead of the hospice service. The emergency medical technicians and firefighters and police rushed in. They pulled off her clothes and pumped her chest, put a tube in her airway and forced oxygen into her lungs, and tried to see if they could shock her heart back. But such efforts rarely succeed with terminal patients, and they did not succeed with her.
Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.
Just before Thanksgiving of 2007, Sara Monopoli, her husband, Rich, and her mother, Dawn Thomas, met with Dr. Marcoux to discuss the options she had left. By this point, Sara had undergone three rounds of chemotherapy with limited, if any, effect. Perhaps Marcoux could have discussed what she most wanted as death neared and how best to achieve those wishes. But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying.
Recently, I spoke to Sara’s husband and her parents. Sara knew that her disease was incurable, they pointed out. The week after she was given the diagnosis and delivered her baby, she spelled out her wishes for Vivian’s upbringing after she was gone. She had told her family on several occasions that she did not want to die in the hospital. She wanted to spend her final moments peacefully at home. But the prospect that those moments might be coming soon, that there might be no way to slow the disease, “was not something she or I wanted to discuss,” her mother said.
Her father, Gary, and her twin sister, Emily, still held out hope for a cure. The doctors simply weren’t looking hard enough, they felt. “I just couldn’t believe there wasn’t something,” Gary said. For Rich, the experience of Sara’s illness had been disorienting: “We had a baby. We were young. And this was so shocking and so odd. We never discussed stopping treatment.”
Marcoux took the measure of the room. With almost two decades of experience treating lung cancer, he had been through many of these conversations. He has a calm, reassuring air and a native Minnesotan’s tendency to avoid confrontation or overintimacy. He tries to be scientific about decisions.
“I know that the vast majority of my patients are going to die of their disease,” he told me. The data show that, after failure of second-line chemotherapy, lung-cancer patients rarely get any added survival time from further treatments and often suffer significant side effects. But he, too, has his hopes.
He told them that, at some point, “supportive care” was an option for them to think about. But, he went on, there were also experimental therapies. He told them about several that were under trial. The most promising was a Pfizer drug that targeted one of the mutations found in her cancer’s cells. Sara and her family instantly pinned their hopes on it. The drug was so new that it didn’t even have a name, just a number—PF0231006—and this made it all the more enticing.
There were a few hovering issues, including the fact that the scientists didn’t yet know the safe dose. The drug was only in a Phase I trial—that is, a trial designed to determine the toxicity of a range of doses, not whether the drug worked. Furthermore, a test of the drug against her cancer cells in a petri dish showed no effect. But Marcoux didn’t think that these were decisive obstacles—just negatives. The critical problem was that the rules of the trial excluded Sara because of the pulmonary embolism she had developed that summer. To enroll, she would need to wait two months, in order to get far enough past the episode. In the meantime, he suggested trying another conventional chemotherapy, called Navelbine. Sara began the treatment the Monday after Thanksgiving.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
I asked Marcoux what he hopes to accomplish for terminal lung-cancer patients when they first come to see him. “I’m thinking, Can I get them a pretty good year or two out of this?” he said. “Those are my expectations. For me, the long tail for a patient like her is three to four years.” But this is not what people want to hear. “They’re thinking ten to twenty years. You hear that time and time again. And I’d be the same way if I were in their shoes.”
You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time. Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err.
Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than forty per cent of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—“the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux wasn’t the only one avoiding that conversation with her. I was, too.
Earlier that summer, a PET scan had revealed that, in addition to her lung cancer, she also had thyroid cancer, which had spread to the lymph nodes of her neck, and I was called in to decide whether to operate. This second, unrelated cancer was in fact operable. But thyroid cancers take years to become lethal. Her lung cancer would almost certainly end her life long before her thyroid cancer caused any trouble. Given the extent of the surgery that would have been required, and the potential complications, the best course was to do nothing. But explaining my reasoning to Sara meant confronting the mortality of her lung cancer, something that I felt ill prepared to do.
Sitting in my clinic, Sara did not seem discouraged by the discovery of this second cancer. She seemed determined. She’d read about the good outcomes from thyroid-cancer treatment. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I wondered, and she proved to be that miracle patient who survived metastatic lung cancer?
My solution was to avoid the subject altogether. I told Sara that the thyroid cancer was slow-growing and treatable. The priority was her lung cancer, I said. Let’s not hold up the treatment for that. We could monitor the thyroid cancer and plan surgery in a few months.
I saw her every six weeks, and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out of her eyes. She’d find small things to laugh about, like the tubes that created strange protuberances under her dress. She was ready to try anything, and I found myself focussing on the news about experimental therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.
Between the lung cancer and the chemo, Sara became steadily sicker. She slept most of the time and could do little out of the house. Clinic notes from December describe shortness of breath, dry heaves, coughing up blood, severe fatigue. In addition to the drainage tubes in her chest, she required needle-drainage procedures in her abdomen every week or two to relieve the severe pressure from the litres of fluid that the cancer was producing there.
A CT scan in December showed that the lung cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably. Her lower body had become swollen. She couldn’t speak more than a sentence without pausing for breath. By the first week of February, she needed oxygen at home to breathe. Enough time had elapsed since her pulmonary embolism, however, that she could start on Pfizer’s experimental drug. She just needed one more set of scans for clearance. These revealed that the cancer had spread to her brain, with at least nine metastatic growths across both hemispheres. The experimental drug was not designed to cross the blood-brain barrier. PF0231006 was not going to work.
And still Sara, her family, and her medical team remained in battle mode. Within twenty-four hours, Sara was scheduled to see a radiation oncologist for whole-brain radiation to try to reduce the metastases. On February 12th, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall. She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands.
“Why didn’t you tell anyone?” he asked her.
“I just didn’t want to stop treatment,” she said. “They would make me stop.”
She was given two weeks to recover her strength after the radiation. Then she would be put on another experimental drug from a small biotech company. She was scheduled to start on February 25th. Her chances were rapidly dwindling. But who was to say they were zero?
In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message,” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. “The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves.
Gould was a naturalist, and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.
“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”
I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
For Sara, there would be no miraculous recovery, and, when the end approached, neither she nor her family was prepared. “I always wanted to respect her request to die peacefully at home,” Rich later told me. “But I didn’t believe we could make it happen. I didn’t know how.”
On the morning of Friday, February 22nd, three days before she was to start her new round of chemo, Rich awoke to find his wife sitting upright beside him, pitched forward on her arms, eyes wide, struggling for air. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her nasal tubing, but she got no better.
“I can’t do this,” she said, pausing between each word. “I’m scared.”
He had no emergency kit in the refrigerator. No hospice nurse to call. And how was he to know whether this new development was fixable?
We’ll go to the hospital, he told her. When he asked if they should drive, she shook her head, so he called 911, and told her mother, Dawn, who was in the next room, what was going on. A few minutes later, firemen swarmed up the stairs to her bedroom, sirens wailing outside. As they lifted Sara into the ambulance on a stretcher, Dawn came out in tears.
“We’re going to get ahold of this,” Rich told her. This was just another trip to the hospital, he said to himself. The doctors would figure this out.
At the hospital, Sara was diagnosed with pneumonia. That troubled the family, because they thought they’d done everything to keep infection at bay. They’d washed hands scrupulously, limited visits by people with young children, even limited Sara’s time with baby Vivian if she showed the slightest sign of a runny nose. But Sara’s immune system and her ability to clear her lung secretions had been steadily weakened by the rounds of radiation and chemotherapy as well as by the cancer.
In another way, the diagnosis of pneumonia was reassuring, because it was just an infection. It could be treated. The medical team started Sara on intravenous antibiotics and high-flow oxygen through a mask. The family gathered at her bedside, hoping for the antibiotics to work. This could be reversible, they told one another. But that night and the next morning her breathing only grew more labored.
“I can’t think of a single funny thing to say,” Emily told Sara as their parents looked on.
“Neither can I,” Sara murmured. Only later did the family realize that those were the last words they would ever hear from her. After that, she began to drift in and out of consciousness. The medical team had only one option left: to put her on a ventilator. Sara was a fighter, right? And the next step for fighters was to escalate to intensive care.
This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
This was stunning, and puzzling: it wasn’t obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients, the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
Can mere discussions really do so much? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.
I spoke to Dr. Gregory Thompson, a critical-care specialist at Gundersen Lutheran Hospital, while he was on I.C.U. duty one recent evening, and he ran through his list of patients with me. In most respects, the patients were like those found in any I.C.U.—terribly sick and living through the most perilous days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his mid-sixties with a ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in other I.C.U.s I’d seen: none had a terminal disease; none battled the final stages of metastatic cancer or untreatable heart failure or dementia.
To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get physicians and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted-living facility to complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:
1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?
By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions. Having this system in place, Thompson said, has made his job vastly easier. But it’s not because the specifics are spelled out for him every time a sick patient arrives in his unit.
“These things are not laid out in stone,” he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. “But, instead of having the discussion when they get to the I.C.U., we find many times it has already taken place.”
Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease. But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. When wishes aren’t clear, Thompson said, “families have also become much more receptive to having the discussion.” The discussion, not the list, was what mattered most. Discussion had brought La Crosse’s end-of-life costs down to just over half the national average. It was that simple—and that complicated.
One Saturday morning last winter, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.
Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was. But then I remembered how timid I’d been with Sara Monopoli, and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add. “Chemotherapy can be very effective in these situations.”
She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”
I flinched. “No, no,” I said. “Of course not.”
A few days later, I tried again. “We don’t have a cure,” I explained. “But treatment can hold the disease down for a long time.” The goal, I said, was to “prolong your life” as much as possible.
I’ve seen her regularly in the months since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very fondly. “That one phrase that you used—‘prolong your life’—it just . . .” She didn’t want to sound critical.
“It was kind of blunt,” her husband said.
“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.
I spoke to Dr. Susan Block, a palliative-care specialist at my hospital who has had thousands of these difficult conversations and is a nationally recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families. “You have to understand,” Block told me. “A family meeting is a procedure, and it requires no less skill than performing an operation.”
One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake, Block said.
“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.
There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.
The words you use matter. According to experts, you shouldn’t say, “I’m sorry things turned out this way,” for example. It can sound like pity. You should say, “I wish things were different.” You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”
Block has a list of items that she aims to cover with terminal patients in the time before decisions have to be made: what they understand their prognosis to be; what their concerns are about what lies ahead; whom they want to make decisions when they can’t; how they want to spend their time as options become limited; what kinds of trade-offs they are willing to make.
Ten years ago, her seventy-four-year-old father, Jack Block, a professor emeritus of psychology at the University of California at Berkeley, was admitted to a San Francisco hospital with symptoms from what proved to be a mass growing in the spinal cord of his neck. She flew out to see him. The neurosurgeon said that the procedure to remove the mass carried a twenty-per-cent chance of leaving him quadriplegic, paralyzed from the neck down. But without it he had a hundred-per-cent chance of becoming quadriplegic.
The evening before surgery, father and daughter chatted about friends and family, trying to keep their minds off what was to come, and then she left for the night. Halfway across the Bay Bridge, she recalled, “I realized, ‘Oh, my God, I don’t know what he really wants.’ ” He’d made her his health-care proxy, but they had talked about such situations only superficially. So she turned the car around.
Going back in “was really uncomfortable,” she said. It made no difference that she was an expert in end-of-life discussions. “I just felt awful having the conversation with my dad.” But she went through her list. She told him, “ ‘I need to understand how much you’re willing to go through to have a shot at being alive and what level of being alive is tolerable to you.’ We had this quite agonizing conversation where he said—and this totally shocked me—‘Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that.’
“I would never have expected him to say that,” Block went on. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that, in order to save his life, they would need to go back in. But he had already become nearly quadriplegic and would remain severely disabled for many months and possibly forever. What did she want to do?
“I had three minutes to make this decision, and, I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the O.K. to take him back to the operating room.
“If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment, because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he survived only to go through what proved to be a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided.
During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. This past year, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, this past January, he decided to stop the battle and go home.
“We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.”
Susan Block and her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or travelling or enjoying chocolate ice cream. Few people have this discussion, and there is good reason for anyone to dread these conversations. They can unleash difficult emotions. People can become angry or overwhelmed. Handled poorly, the conversations can cost a person’s trust. Handled well, they can take real time.
I spoke to an oncologist who told me about a twenty-nine-year-old patient she had recently cared for who had an inoperable brain tumor that continued to grow through second-line chemotherapy. The patient elected not to attempt any further chemotherapy, but getting to that decision required hours of discussion—for this was not the decision he had expected to make. First, the oncologist said, she had a discussion with him alone. They reviewed the story of how far he’d come, the options that remained. She was frank. She told him that in her entire career she had never seen third-line chemotherapy produce a significant response in his type of brain tumor. She had looked for experimental therapies, and none were truly promising. And, although she was willing to proceed with chemotherapy, she told him how much strength and time the treatment would take away from him and his family.
He did not shut down or rebel. His questions went on for an hour. He asked about this therapy and that therapy. And then, gradually, he began to ask about what would happen as the tumor got bigger, the symptoms he’d have, the ways they could try to control them, how the end might come.
The oncologist next met with the young man together with his family. That discussion didn’t go so well. He had a wife and small children, and at first his wife wasn’t ready to contemplate stopping chemo. But when the oncologist asked the patient to explain in his own words what they’d discussed, she understood. It was the same with his mother, who was a nurse. Meanwhile, his father sat quietly and said nothing the entire time.
A few days later, the patient returned to talk to the oncologist. “There should be something. There must be something,” he said. His father had shown him reports of cures on the Internet. He confided how badly his father was taking the news. No patient wants to cause his family pain. According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.
The oncologist went to the father’s home to meet with him. He had a sheaf of possible trials and treatments printed from the Internet. She went through them all. She was willing to change her opinion, she told him. But either the treatments were for brain tumors that were very different from his son’s or else he didn’t qualify. None were going to be miraculous. She told the father that he needed to understand: time with his son was limited, and the young man was going to need his father’s help getting through it.
The oncologist noted wryly how much easier it would have been for her just to prescribe the chemotherapy. “But that meeting with the father was the turning point,” she said. The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focussed on being together, and it proved to be the most meaningful time they’d ever spent.
Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.” All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want.
Sara Monopoli had had enough discussions to let her family and her oncologist know that she did not want hospitals or I.C.U.s at the end—but not enough to have learned how to achieve this. From the moment she arrived in the emergency room that Friday morning in February, the train of events ran against a peaceful ending. There was one person who was disturbed by this, though, and who finally decided to intercede—Chuck Morris, her primary physician. As her illness had progressed through the previous year, he had left the decision-making largely to Sara, her family, and the oncology team. Still, he had seen her and her husband regularly, and listened to their concerns. That desperate morning, Morris was the one person Rich called before getting into the ambulance. He headed to the emergency room and met Sara and Rich when they arrived.
Morris said that the pneumonia might be treatable. But, he told Rich, “I’m worried this is it. I’m really worried about her.” And he told him to let the family know that he said so.
Upstairs in her hospital room, Morris talked with Sara and Rich about the ways in which the cancer had been weakening her, making it hard for her body to fight off infection. Even if the antibiotics halted the infection, he said, he wanted them to remember that there was nothing that would stop the cancer.
Sara looked ghastly, Morris told me. “She was so short of breath. It was uncomfortable to watch. I still remember the attending”—the oncologist who admitted her for the pneumonia treatment. “He was actually kind of rattled about the whole case, and for him to be rattled is saying something.”
After her parents arrived, Morris talked with them, too, and when they were finished Sara and her family agreed on a plan. The medical team would continue the antibiotics. But if things got worse they would not put her on a breathing machine. They also let him call the palliative-care team to visit. The team prescribed a small dose of morphine, which immediately eased her breathing. Her family saw how much her suffering diminished, and suddenly they didn’t want any more suffering. The next morning, they were the ones to hold back the medical team.
“They wanted to put a catheter in her, do this other stuff to her,” her mother, Dawn, told me. “I said, ‘No. You aren’t going to do anything to her.’ I didn’t care if she wet her bed. They wanted to do lab tests, blood-pressure measurements, finger sticks. I was very uninterested in their bookkeeping. I went over to see the head nurse and told them to stop.”
In the previous three months, almost nothing we’d done to Sara—none of our chemotherapy and scans and tests and radiation—had likely achieved anything except to make her worse. She may well have lived longer without any of it. At least she was spared at the very end.
That day, Sara fell into unconsciousness as her body continued to fail. Through the next night, Rich recalled, “there was this awful groaning.” There is no prettifying death. “Whether it was with inhaling or exhaling, I don’t remember, but it was horrible, horrible, horrible to listen to.”
Her father and her sister still thought that she might rally. But when the others had stepped out of the room, Rich knelt down weeping beside Sara and whispered in her ear. “It’s O.K. to let go,” he said. “You don’t have to fight anymore. I will see you soon.”
Later that morning, her breathing changed, slowing. At 9:45 A.M., Rich said, “Sara just kind of startled. She let a long breath out. Then she just stopped.” ♦
Only
Three Ways To Die
Posted by Alex Lickerman, MD
“The absolute truth, Dr. Lickerman?” Emily (not her real name) said to me, tears sliding down her red, swollen cheeks. “It was a relief.”
She wasn’t referring to being fired from a job she secretly despised or having a divorce finalized from a husband she no longer loved. She was describing instead how she felt about the death of her mother.
Her mother had been diagnosed with Alzheimer’s dementia ten years earlier and had finally died after a short seven day stretch of refusing to eat or drink. Emily had debated whether or not to have a feeding tube placed in her mother’s stomach to keep her alive but ultimately decided doing so would only prolong her death rather than provide more meaningful, quality-filled days of life.
And yet, Emily confessed to me, she now felt horrible guilt, not just for having chosen not to prolong her mother’s life, but for feeling relief at her passing. She’d known she’d feel both before she made her decision but had made it anyway, thinking it truly the most compassionate thing she could do for her mother, whom she loved, who by then had become bed-bound, non-verbal, and entirely dependent on others for every aspect of her care and survival.
As she talked about all the emotions she was feeling, she fleetingly expressed a wish that the end had come abruptly, perhaps in the form of a heart attack, rather than at the end of ten long years of decline with all it had entailed, both for her mother and herself. After our discussion, her wish got me thinking about which of the three ways we die is actually best.
(1) SUDDENLY
Death comes to many without warning, as a mid-sentence interruption (sometimes literally). We’re simply here one minute and gone the next. Though this seems at first glance a horrible fate, there are some benefits to dying this way, including being able to avoid:
(2) SLOWLY WHILE AWARE
Unfortunately, many become aware of their impending death months or even years in advance of it. The drawbacks of dying this way are obvious:
(3) SLOWLY WHILE UNAWARE
More and more people are dying either from or with dementia that prevents them from being aware that they’re terminal. While at first glance this would seem the worst of the three ways to die, like the other two ways to die, some benefit exists: the patient him or herself doesn’t usually suffer the emotional trauma or fear that accompanies an impending death. Many patients are in fact what we describe in the medical world as “pleasantly demented”—often quite blissfully unaware and even happy. The people who suffer most in this situation are the family members and friends who watch it, frequently finding themselves left with memories of their loved one they don’t want, guilt over how they felt and treated their dying loved one (for a more thorough discussion of this topic see Letter To A Widow), and an inability to come to closure regarding rifts in relationships.
The point here of course is that no one can predict or determine which of the three ways they’ll die. So if you want to die without regret, you must prepare yourself for all three possibilities. To do so, ask yourself the following questions:
Posted by Alex Lickerman, MD
“The absolute truth, Dr. Lickerman?” Emily (not her real name) said to me, tears sliding down her red, swollen cheeks. “It was a relief.”
She wasn’t referring to being fired from a job she secretly despised or having a divorce finalized from a husband she no longer loved. She was describing instead how she felt about the death of her mother.
Her mother had been diagnosed with Alzheimer’s dementia ten years earlier and had finally died after a short seven day stretch of refusing to eat or drink. Emily had debated whether or not to have a feeding tube placed in her mother’s stomach to keep her alive but ultimately decided doing so would only prolong her death rather than provide more meaningful, quality-filled days of life.
And yet, Emily confessed to me, she now felt horrible guilt, not just for having chosen not to prolong her mother’s life, but for feeling relief at her passing. She’d known she’d feel both before she made her decision but had made it anyway, thinking it truly the most compassionate thing she could do for her mother, whom she loved, who by then had become bed-bound, non-verbal, and entirely dependent on others for every aspect of her care and survival.
As she talked about all the emotions she was feeling, she fleetingly expressed a wish that the end had come abruptly, perhaps in the form of a heart attack, rather than at the end of ten long years of decline with all it had entailed, both for her mother and herself. After our discussion, her wish got me thinking about which of the three ways we die is actually best.
(1) SUDDENLY
Death comes to many without warning, as a mid-sentence interruption (sometimes literally). We’re simply here one minute and gone the next. Though this seems at first glance a horrible fate, there are some benefits to dying this way, including being able to avoid:
- The stirring up of the fear of death. Most of us live by denying the possibility of death or at least by ignoring it. This enables us to function without fear that might otherwise significantly reduce the quality of our lives. How lucky to be able to die without having this fear stirred up at all.
- Prolonged physical suffering. Most people seem to fear this more than death itself. I’ve certainly seen my share of horrible suffering at the end of life and how it tears patients and their families apart almost more than dying itself.
- Anticipatory dread of your death on the part of your family and friends. The shock of losing a loved one suddenly, especially out of turn, is great. And yet even when anticipated, the shock is rarely diminished. How much better for your family to be able to avoid the active anticipation of your death. People often report anticipating something good is often better and anticipating something bad often worse than the actual experience of either.
- Important work is often left undone. Certainly, if you remain vital up until the moment of your death, work will always be left undone, but a sudden death may steal from you a wonderful sense of completeness and closure to which a life fully and well lived entitles you.
- Important things are often left unsaid. The greatest drawback, it seems to me, of an unexpected death.
(2) SLOWLY WHILE AWARE
Unfortunately, many become aware of their impending death months or even years in advance of it. The drawbacks of dying this way are obvious:
- Fear of death often compromises the quality of life remaining. Many of my dying patients seem to navigate this with aplomb far greater than I expect of myself. And yet some are absolutely overwhelmed by it, unaided by encouragement, religious beliefs, counseling, or medications.
- The loss of ability to care for oneself accompanying many types of terminal illnesses is often embarrassing, humiliating, and depressing. I’ve had more patients complain about this than almost any other aspect of dying.
- Being given the opportunity for closure. Closure with respect to ongoing projects (personal or work-related), with respect to experiences you still want to have, and most importantly, with respect to relationships you want to repair.
(3) SLOWLY WHILE UNAWARE
More and more people are dying either from or with dementia that prevents them from being aware that they’re terminal. While at first glance this would seem the worst of the three ways to die, like the other two ways to die, some benefit exists: the patient him or herself doesn’t usually suffer the emotional trauma or fear that accompanies an impending death. Many patients are in fact what we describe in the medical world as “pleasantly demented”—often quite blissfully unaware and even happy. The people who suffer most in this situation are the family members and friends who watch it, frequently finding themselves left with memories of their loved one they don’t want, guilt over how they felt and treated their dying loved one (for a more thorough discussion of this topic see Letter To A Widow), and an inability to come to closure regarding rifts in relationships.
The point here of course is that no one can predict or determine which of the three ways they’ll die. So if you want to die without regret, you must prepare yourself for all three possibilities. To do so, ask yourself the following questions:
- Are you living fully the life you want to live right now? If you’re given the chance will you find yourself looking back over your life when its end lies in plain sight and regret the way you spent it? To me this seems the worst fate possible. I try to summon up a fear of it daily to combat my fear of taking the risks living my dream life entails.
- Do you have a will? Are instructions in place for someone to conclude all your business if you die suddenly and can’t yourself?
- Does someone know all your passwords, projects, obligations, and people to contact upon your death? Do you, for instance, have a blog an audience will miss (hopefully) when you die?
- Does your family know your wishes about heroic measures to be taken or not in case of catastrophic illness? Living Wills are fine and good but the stark reality is that most physicians never read them, and those who do are often not present when decisions about heroic measures are being made (eg, in the emergency room or ICU). We in the medical profession invariably turn to family first when patients can’t verbalize their wishes themselves.
- Will your dependents be secure without you? And I don’t mean just financially. Think creatively about what they may need from you in the future (especially if they’re still young now). Perhaps letters or even video recordings with words of wisdom, encouragement, or support you’d like to impart in anticipation of future struggles they might have to face without you.
- Do the people you love know what you want them to know about you and how you feel about them? Have you said everything you want them to have heard? This is perhaps the most critical task to accomplish if you want to die without regret. So, children, speak to your parents. Parents, speak to your children. Brothers talk to sisters and sisters talk to brothers. It may seem awkward and feel uncomfortable to draw attention to the finite aspect of your lives and the state of your relationships with the ones you love. You may put it off, thinking there will always be time. But there’s often not. So say it now. Say it today.
