LETTING GO
He died before / coronary care / Before the defibrillator / Before lidocaine / Monitors / Before intensive care / nurses. / They put him in / an oxygen tent / They made the diagnosis / just for show / They hoped the best for him. / We let him go.
So wrote the physician-poet John Stone in “Spiritual,” a lamentation that technology hadn’t yet advanced sufficiently to save his father in 1954. Yet that very technology, say these three physicians, can stand in the way of a peaceful, dignified death, because of the physical suffering it can cause and the glimmer of false hope it provides patients, doctors and their families. Ken Murray, a retired clinical assistant professor of family medicine at the University of Southern California, explains why physicians, who routinely see “bad deaths,” typically refuse heroic measures for themselves; Danielle Ofri, a clinician at Bellevue Hospital and editor-in-chief ofBellevue Literary Review, tells a story that exposes the messy truth of resuscitation; and Charles Bardes, associate dean of Weill Cornell Medical College, considers what it means to let go.
So wrote the physician-poet John Stone in “Spiritual,” a lamentation that technology hadn’t yet advanced sufficiently to save his father in 1954. Yet that very technology, say these three physicians, can stand in the way of a peaceful, dignified death, because of the physical suffering it can cause and the glimmer of false hope it provides patients, doctors and their families. Ken Murray, a retired clinical assistant professor of family medicine at the University of Southern California, explains why physicians, who routinely see “bad deaths,” typically refuse heroic measures for themselves; Danielle Ofri, a clinician at Bellevue Hospital and editor-in-chief ofBellevue Literary Review, tells a story that exposes the messy truth of resuscitation; and Charles Bardes, associate dean of Weill Cornell Medical College, considers what it means to let go.
Death of a Doctor
By Ken Murray
Years ago a highly respected orthopedist (and my mentor, incidentally) found a lump in his stomach. He was diagnosed with pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient’s five-year survival rate—from 5% to 15%—albeit with poor quality of life. Charlie was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He spent the time with family, and several months later he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die too—though not like the rest of us. What’s unusual is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they understand the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die. But they know the limits of modern medicine. They want to be sure, when the time comes, that no heroic measures will be taken. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me that if you find me like this, you’ll kill me.” Some medical personnel wear medallions stamped NO CODE to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
How has it come to this—that doctors administer so much care they wouldn’t want for themselves? In some rare, unfortunate cases, unethical doctors use the fee-for-service model to do everything they can to make money. More commonly, they are fearful of litigation and do whatever they’re asked to avoid it.
One of my patients was a 78-year-old man who had been ill for years and had undergone more than a dozen major surgeries. He told me he never wanted to be placed on life support machines again. Then, one Saturday, he suffered a massive stroke and was taken to an emergency room unconscious, without his wife. In Jack’s worst nightmare, doctors put him on life support. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
One of the nurses, I later learned, reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his wishes, prolonging his suffering a few more weeks. I would even have made a little more money, and Medicare would have ended up with a $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
Except, that is, when they are the ones being treated. They know all too well the consequences. Almost anyone can find a way to die in peace at home, where pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure caused by lung cancer that had migrated to his brain. We learned that with aggressive treatment, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me, and we spent the next eight months having fun together like we hadn’t had in decades. We went to Disneyland, his first time, and we hung out at home. He was very happy to just watch sports on television and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital food. He had no serious pain, and he remained high-spirited.
One day, Torch didn’t wake up. He spent the next three days in a comalike sleep, then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no physician, but he knew he wanted a life of quality, not just quantity. As for me, my physician has my choices. There will be no heroics, and I will go gentle into that good night. Like my mentor, Charlie. Like my cousin Torch. Like my fellow physicians.
By Ken Murray
Years ago a highly respected orthopedist (and my mentor, incidentally) found a lump in his stomach. He was diagnosed with pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient’s five-year survival rate—from 5% to 15%—albeit with poor quality of life. Charlie was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He spent the time with family, and several months later he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die too—though not like the rest of us. What’s unusual is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they understand the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die. But they know the limits of modern medicine. They want to be sure, when the time comes, that no heroic measures will be taken. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me that if you find me like this, you’ll kill me.” Some medical personnel wear medallions stamped NO CODE to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
How has it come to this—that doctors administer so much care they wouldn’t want for themselves? In some rare, unfortunate cases, unethical doctors use the fee-for-service model to do everything they can to make money. More commonly, they are fearful of litigation and do whatever they’re asked to avoid it.
One of my patients was a 78-year-old man who had been ill for years and had undergone more than a dozen major surgeries. He told me he never wanted to be placed on life support machines again. Then, one Saturday, he suffered a massive stroke and was taken to an emergency room unconscious, without his wife. In Jack’s worst nightmare, doctors put him on life support. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
One of the nurses, I later learned, reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his wishes, prolonging his suffering a few more weeks. I would even have made a little more money, and Medicare would have ended up with a $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
Except, that is, when they are the ones being treated. They know all too well the consequences. Almost anyone can find a way to die in peace at home, where pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure caused by lung cancer that had migrated to his brain. We learned that with aggressive treatment, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me, and we spent the next eight months having fun together like we hadn’t had in decades. We went to Disneyland, his first time, and we hung out at home. He was very happy to just watch sports on television and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital food. He had no serious pain, and he remained high-spirited.
One day, Torch didn’t wake up. He spent the next three days in a comalike sleep, then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no physician, but he knew he wanted a life of quality, not just quantity. As for me, my physician has my choices. There will be no heroics, and I will go gentle into that good night. Like my mentor, Charlie. Like my cousin Torch. Like my fellow physicians.
Against Nature
By Danielle Ofri
The patient’s wife picked up the packet of papers from her lap and held it across the bed over the sleeping patient toward Dr. Graham Benfield, without catching his gaze. “One of the nurses gave this to me,” she said, the sunlight from the window glinting off her cheekbones. The glowing ebony of her face, even at that downward cant, caused Graham’s throat to constrict briefly. ‘We’re supposed to sign these if we’re not doing any more treatments, right?” she asked. Her voice was flat, almost toneless, but that lilt—Jamaican? African?—was still noticeable.
Graham whisked both the papers and his eyes away from her. Written on top in bold letters they said: Do Not Resuscitate. Each sheet was a different version of the form, covering the range of possible human conditions: For Patients With Decisional Capacity. For Patients Without Decisional Capacity With Surrogate Available. For Patients Without Decisional Capacity Without Surrogate Available. There were explanations in English, Spanish, French, Russian, Chinese and a few languages Graham did not recognize.
He flipped through the papers, dreading the discussion. Patients and families familiar with advance directives usually knew the deal—the euphemisms, legalities, ethics—and were quick to sign. Many had made their decisions beforehand and arrived at the hospital armed with living wills, health care proxies, powers of attorney. But many others—especially the immigrant population at East Memorial—had no awareness of the Kafkaesque reality of death in a hospital.
If a patient was found to be lacking in respiration or pulse—typically referred to as dead, in the real world—and had not had the foresight to sign a DNR in advance, a “code blue” would be called. In large teaching hospitals like East Memorial, the code team was an amorphous beast. A code announced on the overhead monitor prompted a veritable running of the bulls: the senior medical resident, the anesthesia resident, the charge nurse, the on-call team, the post-call team, the ICU team. And, of course, the requisite gaggle of medical students anxious to see some action.
Even more difficult to explain than the bloated dramatis personae were the barbaric mechanics of paddles, shocks, breathing tubes and chest pounding, not to mention the less photogenic procedures—IVs slammed in, iodine splattering, medication vials flying, EKG wires tangled, ragged surgical tape binding the breathing tube, saliva dripping down the chin, electrode gel slithering along breasts, private parts flagrantly disrobed, the floor a skating rink of saline, blood, vomit, crumpled wrappers from alcohol pads, gauze pads, syringes, needles, medications.
But most bizarre of all was that this was performed on a person who was dead, and usually for damn good reason—cancer, AIDS, Alzheimer’s, stroke, heart disease or any of the other horrific fates of the civilized world. Yes, there was the rare salvageable patient, which was why the medical profession continued to perform this savage ritual. But for the large part, “resuscitation” was an oxymoron, inflicted on people who started out dead and would generally remain so for the foreseeable future. The unlucky few who were “successfully resuscitated” earned the right to spend the rest of their days in a coma until their disease finished them off for good.
But this was not what Graham would say to the patient’s wife, who sat hunched in the chair, her haunting eyes downcast, as her husband and his bevy of tumors dozed fitfully in the bed.
The typical, if artless, starter was usually: “What would you like us to do if you stopped breathing or your heart stopped beating?” Inexperienced interns would follow up with: “Do you want us to do everything?” to which most patients would immediately reply yes.
But it was unnervingly easy to apply gentle pressure in the other direction: “We could pound on the chest, shock the heart, push a tube down the throat, or...”—and here the voice would soften, eye contact would become more direct, empathy would enter the overture—“...or we could just let nature take its course.”
There seemed to be something intrinsically appealing about nature and its predestined course, despite nature having its own arsenal of brutalities. The little white paper, with a signature here and a witness there, was the talisman to hold back the avalanche of intervention, to allow the fine-toed steps of nature to walk unhindered.
The patient’s wife rotated in her chair so that she faced Graham straight on. He swallowed dryly, then quickly fingered through the forms. Unfortunately there was not one geared toward the socially hapless but nevertheless married physician pathetically attracted to the wife of his dying patient.
“Those papers mean he will die, right?” she asked, staring at Graham, making him sweat under his white polyester coat for more reasons than he cared to admit.
“Well, not exactly,” Graham interjected, even though it was largely true. It was just the way she said it, without the euphemisms. Foreign diction always seemed to shear the niceties—or perhaps it was the obfuscations—off the English language and allow the facts to shiver nakedly in the light. Her husband was definitely going to die—it was just a matter of how protracted and how gruesome his death would be.
Wondering If I Hastened a Patient’s Death
By Mikkael A. Sekeres, MD : NY TIMES : August 20, 2015
In my outpatient exam room, we had arrived at that moment of silence that often marks the crossroads of unwelcome news and a difficult decision.
My patient, in his mid-60s, had endured a five-week hospitalization after he learned he had leukemia, a period of time that included expected complications of chemotherapy such as nausea, hair loss and fevers requiring intravenous antibiotics, and unexpected ones such as a trip to the intensive care unit when his blood pressure plummeted, and an erosion of the tissues lining his esophagus that made it impossible for him to swallow even water.
But he had entered a remission and rather than emerging from his trials war weary, he said the experience “wasn’t too bad.” I marveled at his resilience.
Week by week, as he returned to my clinic, he became stronger and gained weight, and color had even returned to his cheeks – markers of vitality that my mother might cite, but that also have relevance for those of us who claim only objective assessments of health.
Unfortunately for my patient, though, the numbers didn’t lie. His blood counts failed to recover, and when we performed a bone marrow biopsy to determine why, the results showed that his leukemia persisted. I gave him this news, along with the option of returning to the hospital for more chemotherapy en route to a bone marrow transplant, an approach that carried with it risks of significant toxicities, but his only chance for cure; or of eschewing treatment, to spend as much time as possible out of our clutches.
He was quick in his answer: “I’m not ready to die yet. I’ll take the chemo.”
I asked him to take some time to think about it, to talk about it with his wife and his family, over a kitchen table and away from the stark drama of the clinic. He was resolute though, and we admitted him to the hospital the following day. Two weeks later, he died of an uncontrollable infection, on a breathing tube in the intensive care unit.
I was left wondering, not for the first time in my career, if I had launched someone on a path toward premature death. At the very least, I was guilty of that act of hubris of which oncologists are often accused: giving chemotherapy to a person only days before his death.
A study published in the journal Cancer supports this stereotype. Among 330 older adults with leukemia, approximately 60 percent received chemotherapy similar to what I gave my patient. With a median follow-up of two years, 88 percent of people had died. Those who received chemotherapy spent 51 percent of their remaining days either hospitalized or in clinic. Most telling, within 30 days of death, almost 85 percent of patients were hospitalized, and 45 percent had received chemotherapy. Particularly jarring, only 22 percent received hospice services, and those who were treated with chemotherapy were half as likely as those not receiving treatment for their leukemia to enter hospice.
How could I have done such a thing? The answer, I have learned, is so much more complicated than the numbers would have us believe.
Older people with leukemia who decide to pursue chemotherapy to eradicate their disease have declared that their treatment goal includes prolonging survival, and maybe even cure. For them, a shift in that goal, toward palliation, occurs only when the leukemia has proven to be dogged in its resistance to our assaults. And when that happens people survive, on average, for only one month. Thus, the routine administration of therapy so proximate to death.
Sometimes, it takes something as dramatic as a hospitalization for people to recognize the seriousness, and irreversibility, of their condition. Even if they do, and express an openness to hospice, financial constraints actually preclude many hospice organizations from allowing blood product transfusions, despite the recognition by leukemia patients and their doctors that this intervention is considered palliative, rather than heroic, in leukemia patients. Thus, the high hospitalization rate, and appallingly low rate of hospice use, at the end of life.
While this all makes sense, it shouldn’t let me, or my colleagues, completely off the hook.
I sent a condolence letter to my patient’s widow, telling her how much I would miss seeing both her husband and her. She wrote back, warmly thanking me for the care we had provided him. It didn’t make me feel better, though, about offering him that second round of chemotherapy, or maybe even the first.
Perhaps in focusing on the 10 percent or so of people who enjoy a long survival following their leukemia diagnosis, whom we can’t routinely identify when we discuss the potential benefits of chemotherapy, we neglect to emphasize equally the 90 percent who don’t, the amount of their lives they will spend in health care settings, and alternative ways of living out the time they have left.
But if we do call attention to the majority, will we be preparing them appropriately for the remaining time they have on this earth? Or dashing what hope they have of defeating their cancer?
Dr. Mikkael Sekeres is director of the leukemia program at theCleveland Clinic.
By Danielle Ofri
The patient’s wife picked up the packet of papers from her lap and held it across the bed over the sleeping patient toward Dr. Graham Benfield, without catching his gaze. “One of the nurses gave this to me,” she said, the sunlight from the window glinting off her cheekbones. The glowing ebony of her face, even at that downward cant, caused Graham’s throat to constrict briefly. ‘We’re supposed to sign these if we’re not doing any more treatments, right?” she asked. Her voice was flat, almost toneless, but that lilt—Jamaican? African?—was still noticeable.
Graham whisked both the papers and his eyes away from her. Written on top in bold letters they said: Do Not Resuscitate. Each sheet was a different version of the form, covering the range of possible human conditions: For Patients With Decisional Capacity. For Patients Without Decisional Capacity With Surrogate Available. For Patients Without Decisional Capacity Without Surrogate Available. There were explanations in English, Spanish, French, Russian, Chinese and a few languages Graham did not recognize.
He flipped through the papers, dreading the discussion. Patients and families familiar with advance directives usually knew the deal—the euphemisms, legalities, ethics—and were quick to sign. Many had made their decisions beforehand and arrived at the hospital armed with living wills, health care proxies, powers of attorney. But many others—especially the immigrant population at East Memorial—had no awareness of the Kafkaesque reality of death in a hospital.
If a patient was found to be lacking in respiration or pulse—typically referred to as dead, in the real world—and had not had the foresight to sign a DNR in advance, a “code blue” would be called. In large teaching hospitals like East Memorial, the code team was an amorphous beast. A code announced on the overhead monitor prompted a veritable running of the bulls: the senior medical resident, the anesthesia resident, the charge nurse, the on-call team, the post-call team, the ICU team. And, of course, the requisite gaggle of medical students anxious to see some action.
Even more difficult to explain than the bloated dramatis personae were the barbaric mechanics of paddles, shocks, breathing tubes and chest pounding, not to mention the less photogenic procedures—IVs slammed in, iodine splattering, medication vials flying, EKG wires tangled, ragged surgical tape binding the breathing tube, saliva dripping down the chin, electrode gel slithering along breasts, private parts flagrantly disrobed, the floor a skating rink of saline, blood, vomit, crumpled wrappers from alcohol pads, gauze pads, syringes, needles, medications.
But most bizarre of all was that this was performed on a person who was dead, and usually for damn good reason—cancer, AIDS, Alzheimer’s, stroke, heart disease or any of the other horrific fates of the civilized world. Yes, there was the rare salvageable patient, which was why the medical profession continued to perform this savage ritual. But for the large part, “resuscitation” was an oxymoron, inflicted on people who started out dead and would generally remain so for the foreseeable future. The unlucky few who were “successfully resuscitated” earned the right to spend the rest of their days in a coma until their disease finished them off for good.
But this was not what Graham would say to the patient’s wife, who sat hunched in the chair, her haunting eyes downcast, as her husband and his bevy of tumors dozed fitfully in the bed.
The typical, if artless, starter was usually: “What would you like us to do if you stopped breathing or your heart stopped beating?” Inexperienced interns would follow up with: “Do you want us to do everything?” to which most patients would immediately reply yes.
But it was unnervingly easy to apply gentle pressure in the other direction: “We could pound on the chest, shock the heart, push a tube down the throat, or...”—and here the voice would soften, eye contact would become more direct, empathy would enter the overture—“...or we could just let nature take its course.”
There seemed to be something intrinsically appealing about nature and its predestined course, despite nature having its own arsenal of brutalities. The little white paper, with a signature here and a witness there, was the talisman to hold back the avalanche of intervention, to allow the fine-toed steps of nature to walk unhindered.
The patient’s wife rotated in her chair so that she faced Graham straight on. He swallowed dryly, then quickly fingered through the forms. Unfortunately there was not one geared toward the socially hapless but nevertheless married physician pathetically attracted to the wife of his dying patient.
“Those papers mean he will die, right?” she asked, staring at Graham, making him sweat under his white polyester coat for more reasons than he cared to admit.
“Well, not exactly,” Graham interjected, even though it was largely true. It was just the way she said it, without the euphemisms. Foreign diction always seemed to shear the niceties—or perhaps it was the obfuscations—off the English language and allow the facts to shiver nakedly in the light. Her husband was definitely going to die—it was just a matter of how protracted and how gruesome his death would be.
Wondering If I Hastened a Patient’s Death
By Mikkael A. Sekeres, MD : NY TIMES : August 20, 2015
In my outpatient exam room, we had arrived at that moment of silence that often marks the crossroads of unwelcome news and a difficult decision.
My patient, in his mid-60s, had endured a five-week hospitalization after he learned he had leukemia, a period of time that included expected complications of chemotherapy such as nausea, hair loss and fevers requiring intravenous antibiotics, and unexpected ones such as a trip to the intensive care unit when his blood pressure plummeted, and an erosion of the tissues lining his esophagus that made it impossible for him to swallow even water.
But he had entered a remission and rather than emerging from his trials war weary, he said the experience “wasn’t too bad.” I marveled at his resilience.
Week by week, as he returned to my clinic, he became stronger and gained weight, and color had even returned to his cheeks – markers of vitality that my mother might cite, but that also have relevance for those of us who claim only objective assessments of health.
Unfortunately for my patient, though, the numbers didn’t lie. His blood counts failed to recover, and when we performed a bone marrow biopsy to determine why, the results showed that his leukemia persisted. I gave him this news, along with the option of returning to the hospital for more chemotherapy en route to a bone marrow transplant, an approach that carried with it risks of significant toxicities, but his only chance for cure; or of eschewing treatment, to spend as much time as possible out of our clutches.
He was quick in his answer: “I’m not ready to die yet. I’ll take the chemo.”
I asked him to take some time to think about it, to talk about it with his wife and his family, over a kitchen table and away from the stark drama of the clinic. He was resolute though, and we admitted him to the hospital the following day. Two weeks later, he died of an uncontrollable infection, on a breathing tube in the intensive care unit.
I was left wondering, not for the first time in my career, if I had launched someone on a path toward premature death. At the very least, I was guilty of that act of hubris of which oncologists are often accused: giving chemotherapy to a person only days before his death.
A study published in the journal Cancer supports this stereotype. Among 330 older adults with leukemia, approximately 60 percent received chemotherapy similar to what I gave my patient. With a median follow-up of two years, 88 percent of people had died. Those who received chemotherapy spent 51 percent of their remaining days either hospitalized or in clinic. Most telling, within 30 days of death, almost 85 percent of patients were hospitalized, and 45 percent had received chemotherapy. Particularly jarring, only 22 percent received hospice services, and those who were treated with chemotherapy were half as likely as those not receiving treatment for their leukemia to enter hospice.
How could I have done such a thing? The answer, I have learned, is so much more complicated than the numbers would have us believe.
Older people with leukemia who decide to pursue chemotherapy to eradicate their disease have declared that their treatment goal includes prolonging survival, and maybe even cure. For them, a shift in that goal, toward palliation, occurs only when the leukemia has proven to be dogged in its resistance to our assaults. And when that happens people survive, on average, for only one month. Thus, the routine administration of therapy so proximate to death.
Sometimes, it takes something as dramatic as a hospitalization for people to recognize the seriousness, and irreversibility, of their condition. Even if they do, and express an openness to hospice, financial constraints actually preclude many hospice organizations from allowing blood product transfusions, despite the recognition by leukemia patients and their doctors that this intervention is considered palliative, rather than heroic, in leukemia patients. Thus, the high hospitalization rate, and appallingly low rate of hospice use, at the end of life.
While this all makes sense, it shouldn’t let me, or my colleagues, completely off the hook.
I sent a condolence letter to my patient’s widow, telling her how much I would miss seeing both her husband and her. She wrote back, warmly thanking me for the care we had provided him. It didn’t make me feel better, though, about offering him that second round of chemotherapy, or maybe even the first.
Perhaps in focusing on the 10 percent or so of people who enjoy a long survival following their leukemia diagnosis, whom we can’t routinely identify when we discuss the potential benefits of chemotherapy, we neglect to emphasize equally the 90 percent who don’t, the amount of their lives they will spend in health care settings, and alternative ways of living out the time they have left.
But if we do call attention to the majority, will we be preparing them appropriately for the remaining time they have on this earth? Or dashing what hope they have of defeating their cancer?
Dr. Mikkael Sekeres is director of the leukemia program at theCleveland Clinic.
Crossing the River
By Charles Bardes
1. Charon
For someone killed quickly, the journey to the afterlife is swift. But for those who die of illness, the passage is slower. They descend gradually underground, wearily approaching the realm of death, whose boundary is the River Styx. There the sullen ferryman Charon rows the newly departed over into Hades. It was Sisyphus the king who tricked Charon by instructing his queen to omit the customary fee, a coin placed beneath the tongue. So Sisyphus was sent back to earth to live a few more years. But in the end he was punished: Returned to Hades, he was condemned to roll his famous stone uphill for eternity.
Sometimes, as a man nears death, his physician assumes the role of Charon. When one rows gently—or shall both row?—the dying man and his family can integrate their suffering into their lives at large. When not, there is confounding and turmoil, denial and rage.
2. He died after a courageous struggle
So read the obituaries. “He died after a long fight with cancer,” “succumbed after a valiant six-month battle,” “struggled heroically.” Or, so often heard when a person is diagnosed with a serious illness: “I’m going to beat this thing.” (Uttering the disease’s name, especially when the name is cancer, is taboo.)
It is a metaphor, of course, that equates illness with violent conflict. Winning equals cure, losing equals death. If the image is a battlefield, there are two combatants locked in struggle, or two masses of opposed forces. If the image is a siege, there is a beleaguered fortress with a wall, and an attacking enemy is out there, beyond the pale. Or, as cancer is often imagined, the disease is a turncoat, a member of the inner sanctum treacherously betraying the host.
But what if death is not an enemy, not an externalized force outside and against oneself? Is not dying always within us? The cell is programmed to die. The will imagines otherwise. The battle metaphor violates the inner presence of dying, the drowsy yearning for the void, release, blessed darkness, Mother Night. Gathering one’s personal strengths in illness, yes. But fight? What is there to fight about?
3. Let him go
He has suffered many strokes and many seizures. He breathes, but never again will he speak, swallow or awaken. “It is time to let go,” says the neurologist to the wife. She fires him and hires another.
For the phrase has meant something entirely different to the physician and to the wife. The neurologist has unwittingly included two statements in a single expression. (1) You must accept that your husband will die. It is time for you to begin the painful process of emotional separation. (2) We physicians must accept that our patient will die. We should restrain our clinical aggression, the reflex to perform tests and procedures.
Let him go—the wife has heard something entirely different. She thinks: (3) they want to euthanize my husband. She is outraged: “I want him to live as long as possible, as long as he’s not suffering.” Well, he’s not suffering, if suffering is mental awareness of pain or anguish. She, however, is suffering, and the medical people are suffering—much less so, of course, but they don’t want to stick needles into this man, don’t want to watch as he slips farther from our own world, don’t want to write their silly notes about vital signs, feeding tubes and bedsores. They want him to die, which they know is inevitable, know with their lived experience and not just with their minds, the way a sailor knows the sea differently from a cartographer. Perhaps the wife has intuited their desire and extrapolated it into an active wish or plan. She will hear none of it.
And then there is (4) release—the child who lets go the string of his beautiful balloon and watches as it drifts away over the trees to join, or rejoin, the clouds.
By Charles Bardes
1. Charon
For someone killed quickly, the journey to the afterlife is swift. But for those who die of illness, the passage is slower. They descend gradually underground, wearily approaching the realm of death, whose boundary is the River Styx. There the sullen ferryman Charon rows the newly departed over into Hades. It was Sisyphus the king who tricked Charon by instructing his queen to omit the customary fee, a coin placed beneath the tongue. So Sisyphus was sent back to earth to live a few more years. But in the end he was punished: Returned to Hades, he was condemned to roll his famous stone uphill for eternity.
Sometimes, as a man nears death, his physician assumes the role of Charon. When one rows gently—or shall both row?—the dying man and his family can integrate their suffering into their lives at large. When not, there is confounding and turmoil, denial and rage.
2. He died after a courageous struggle
So read the obituaries. “He died after a long fight with cancer,” “succumbed after a valiant six-month battle,” “struggled heroically.” Or, so often heard when a person is diagnosed with a serious illness: “I’m going to beat this thing.” (Uttering the disease’s name, especially when the name is cancer, is taboo.)
It is a metaphor, of course, that equates illness with violent conflict. Winning equals cure, losing equals death. If the image is a battlefield, there are two combatants locked in struggle, or two masses of opposed forces. If the image is a siege, there is a beleaguered fortress with a wall, and an attacking enemy is out there, beyond the pale. Or, as cancer is often imagined, the disease is a turncoat, a member of the inner sanctum treacherously betraying the host.
But what if death is not an enemy, not an externalized force outside and against oneself? Is not dying always within us? The cell is programmed to die. The will imagines otherwise. The battle metaphor violates the inner presence of dying, the drowsy yearning for the void, release, blessed darkness, Mother Night. Gathering one’s personal strengths in illness, yes. But fight? What is there to fight about?
3. Let him go
He has suffered many strokes and many seizures. He breathes, but never again will he speak, swallow or awaken. “It is time to let go,” says the neurologist to the wife. She fires him and hires another.
For the phrase has meant something entirely different to the physician and to the wife. The neurologist has unwittingly included two statements in a single expression. (1) You must accept that your husband will die. It is time for you to begin the painful process of emotional separation. (2) We physicians must accept that our patient will die. We should restrain our clinical aggression, the reflex to perform tests and procedures.
Let him go—the wife has heard something entirely different. She thinks: (3) they want to euthanize my husband. She is outraged: “I want him to live as long as possible, as long as he’s not suffering.” Well, he’s not suffering, if suffering is mental awareness of pain or anguish. She, however, is suffering, and the medical people are suffering—much less so, of course, but they don’t want to stick needles into this man, don’t want to watch as he slips farther from our own world, don’t want to write their silly notes about vital signs, feeding tubes and bedsores. They want him to die, which they know is inevitable, know with their lived experience and not just with their minds, the way a sailor knows the sea differently from a cartographer. Perhaps the wife has intuited their desire and extrapolated it into an active wish or plan. She will hear none of it.
And then there is (4) release—the child who lets go the string of his beautiful balloon and watches as it drifts away over the trees to join, or rejoin, the clouds.
How Doctors Die
By Dan Gorenstein : NY Times : November 19, 2013
BRAVE. You hear that word a lot when people are sick. It’s all about the fight, the survival instinct, the courage. But when Dr. Elizabeth D. McKinley’s family and friends talk about bravery, it is not so much about the way Dr. McKinley, a 53-year-old internist from Cleveland, battled breast cancer for 17 years. It is about the courage she has shown in doing something so few of us are able to do: stop fighting.
This spring, after Dr. McKinley’s cancer found its way into her liver and lungs and the tissue surrounding her brain, she was told she had two options.
“You can put chemotherapy directly into your brain, or total brain radiation,” she recalled recently from her home in suburban Cleveland. “I’m looking at these drugs head-on and either one would change me significantly. I didn’t want that.” She also did not want to endure the side effects of radiation.
What Dr. McKinley wanted was time with her husband, a radiologist, and their two college-age children, and another summer to soak her feet in the Atlantic Ocean. But most of all, she wanted “a little more time being me and not being somebody else.” So, she turned down more treatment and began hospice care, the point at which the medical fight to extend life gives way to creating the best quality of life for the time that is left.
Dr. Robert Gilkeson, Dr. McKinley’s husband, remembers his mother-in-law, Alice McKinley, being unable to comprehend her daughter’s decision. “ ‘Isn’t there some treatment we could do here?’ she pleaded with me,” he recalled. “I almost had to bite my tongue, so I didn’t say, ‘Do you have any idea how much disease your daughter has?’ ” Dr. McKinley and her husband were looking at her disease as doctors, who know the limits of medicine; her mother was looking at her daughter’s cancer as a mother, clinging to the promise of medicine as limitless.
When it comes to dying, doctors, of course, are ultimately no different from the rest of us. And their emotional and physical struggles are surely every bit as wrenching. But they have a clear advantage over many of us. They have seen death up close. They understand their choices, and they have access to the best that medicine has to offer.
“You have a lot of knowledge, a lot of awareness of what’s likely to come,” said Dr. J. Andrew Billings from his home in Cambridge, Mass.
Dr. Billings, 68 and semi-retired, is an expert in palliative care, which can include managing pain, emotional support and end-of-life planning. He is also a cancer patient with a life-threatening form of lymphoma. Dr. Billings said that knowledge of what may be ahead can give doctors more control over their quality of life before they die — control that eludes many of us.
Research shows that most Americans do not die well, which is to say they do not die the way they say they want to — at home, surrounded by the people who love them. According to data from Medicare, only a third of patients die this way. More than 50 percent spend their final days in hospitals, often in intensive care units, tethered to machines and feeding tubes, or in nursing homes.
There is no statistical proof that doctors enjoy a better quality of life before death than the rest of us. But research indicates they are better planners. An often-cited study, published in 2003, of physicians who had been medical students at Johns Hopkins University found that they were more likely than the general public to have created advance directives, or living wills, which lay out specific plans for care if a patient is unable to make decisions. Of the 765 doctors studied, 64 percent had advanced directives, compared with about 47 percent for American adults over 40.
Patients and families often pay a high price for difficult and unscripted deaths, psychologically and economically. The Dartmouth Atlas Project, which gathers and analyzes health care data, found that 17 percent of Medicare’s $550 billion annual budget is spent on patients’ last six months of life.
“We haven’t bent the cost curve on end-of-life care,” said Dr. David C. Goodman, a senior researcher for the project.
The amount spent in the intensive care unit is climbing. Between 2007 and 2010, Medicare spending on patients in the last two years of life jumped 13 percent, to nearly $70,000 per patient.
The evidence is clear, Dr. Goodman said, that things could change if doctors “respect patient preferences and provide fair information about their prognosis and treatment choices.”
Sometimes that can be easier said than done, even for doctors. One day last month, as he sat through the first of several hours of chemotherapy at the Dana-Farber Cancer Institute in Boston, Dr. Billings said he had looked at statistical survival curves for his form of lymphoma.
“There are some dots that are very, very soon, and there are some dots that are a long ways off, and I hope I’m one of those distant dots,” he said.
Dr. Billings knows how important it is to have that information. As a palliative care doctor, he has spent a lifetime helping people plan their final days. Also, he is married to a prominent palliative care doctor, Dr. Susan D. Block.
“As a doctor you know how to ask for things,” he said. But as a patient, Dr. Billings said he had learned how difficult it can be to push for all the information needed. “It’s hard to ask those questions,” he said. “It’s hard to get answers.”
There is a reason for that. In his book “Death Foretold,” Nicholas A. Christakis, a Yale sociologist, writes that few physicians even offer patients a prognosis, and when they do, they do not do a great job. Predictions, he argues, are often overly optimistic, with doctors being accurate just 20 percent of the time.
But without some basic understanding of the road ahead, Dr. Anthony L. Back, a University of Washington professor and palliative care specialist, said even sophisticated patients could end up where they least want to be: the I.C.U. “They haven’t realized the implications of saying: ‘Yeah, I’ll have that one more treatment. Yeah, I’ll have that chemotherapy,’ ” Dr. Back said.
In Raleigh, N.C., Dr. Kenneth D. Zeitler has practiced oncology for 30 years. The son of a doctor and the father of two doctors, he learned 18 years ago that he had a brain tumor, which was removed. When the tumor recurred in 2004, he took the conservative route and decided against an operation — the risk of paralysis was too great. Dr. Zeitler, his wife and their two children mapped out a clear medical path, or so they thought.
Then in June, he woke up with the left half of his body paralyzed, after a low-risk biopsy caused a hemorrhage in his brain. “As a physician myself, when treating patients, I listened to this inner voice,” he said, but now he was mad at himself. “Instead of just saying ‘No, I won’t do this biopsy,’ I didn’t follow my instincts.”
Dr. Zeitler realized after his biopsy that saying no can mean more than turning down a procedure. It can mean dealing with something much harder: his family’s expectations that he will do whatever it takes to live and remain with them.
As transparent as Dr. Zeitler was with his family about his clinical care, he had walled off his deepest fears about losing pleasure in his daily life. He has since regained most physical functions and says he has had another chance to talk to his family. “As much as they’ll cry about me at every bar mitzvah and every wedding, I don’t want to be there if I’m just completely miserable psychologically and physically,” he said. “I’ve seen that. I don’t need that.”
Dr. Joan Teno, an internist and a professor of medicine at Brown University, says that often, even families like the Zeitlers, avoid the difficult conversations they need to have together and with doctors about the emotional side of dying.
“We pay for another day in I.C.U.,” she said. “But we don’t pay for people to understand what their goals and values are. We don’t pay doctors to help patients think about their goals and values and then develop a plan.”
But the end-of-life choices Americans make are slowly shifting. Medicare figures show that fewer people are dying in the hospital — nearly a 10 percent dip in the last decade — and that there has been a modest increase in hospice care. At the same time, palliative care is being embraced on a broad scale, with most large hospitals offering services.
The Affordable Care Act could accelerate those trends. Ezekiel Emanuel, the former White House health policy adviser, has said he believes that new penalties for hospital readmissions under the law could improve end-of-life care, making it more likely “we make the patient’s passage much more comfortable and out of the hospital.”
Culturally there is movement too. For example, deathoverdinner.org, a website to help people hold end-of-life discussions, was started in August. The project’s founder, Michael Hebb, said more than 1,000 dinner parties had been held, including some at nursing homes.
The front door at Dr. McKinley‘s big house was wide open recently. Friends and caregivers came and went. Her hospice bed sat in the living room. Since she stopped treatment, she was spending her time writing, being with her family, gazing at her plants. Dr. McKinley knew she was going to die, and she knew how she wanted it to go.
“It’s not a decision I would change,” Dr. McKinley said. “If you asked me 700 times I wouldn’t change it, because it is the right one for me.”
Dr. McKinley died Nov. 9, at home, where she wanted to be.
Dan Gorenstein is the senior health care reporter for the public radio program “Marketplace.”
How Long Have I Got Left?
By Paul Kalanithi : NY Times : January 24, 2014
As soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic disease — no role for surgery,” and move on. But this scan was different: It was my own.
I have sat with countless patients and families to discuss grim prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics.
Photo
CreditTucker NicholsPeople react differently to hearing “Procedure X has a 70 percent chance of survival” and “Procedure Y has a 30 percent chance of death.” Phrased that way, people flock to Procedure X, even though the numbers are the same. When a close friend developed pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded them from looking up the statistics, saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry, or that a physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time. For some diseases, the line looks like an airplane gently beginning its descent; for others, like a dive bomber. Physicians think a lot about these curves, their shape, and what they mean. In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness, that she would give me certainty, the straight dope. I could take it. She flatly refused: “No. Absolutely not.” She knew very well I could — and did — look up all the research on the topic. But lung cancer wasn’t my specialty, and she was a world expert. At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.
Now, instead of wondering why some patients persist in asking statistics questions, I began to wonder why physicians obfuscate when they have so much knowledge and experience. Initially when I saw my CT scan, I figured I had only a few months to live. The scan looked bad. I looked bad. I’d lost 30 pounds, developed excruciating back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with the body overwhelmed, failing in its basic drive to sustain itself.
For a few months, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell my wife that she should remarry, and refinance the mortgage. Write overdue letters to dear friends. Yes, there were lots of things I had meant to do in life, but sometimes this happens: Nothing could be more obvious when your day’s work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t I a ghost? No. But then how long did I have? Silence.
Of course, she could not stop my intense reading. Poring over studies, I kept trying to find the one that would tell me when my number would be up. The large general studies said that between 70 and 80 percent of lung cancer patients would die within two years. They did not allow for much hope. But then again, most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth and health mattered? Or maybe my disease was found so late, had spread so far, and I was already so far gone that I was worse off than those 65-year-old smokers.
Many friends and family members provided anecdotes along the lines of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially I wondered if all the stories referred to the same person, connected through the proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. Eventually, though, enough of those stories seeped in through the cracks of my studied realism.
And then my health began to improve, thanks to a pill that targets a specific genetic mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory prefer to go to hell, and just be done with it? Was I supposed to be making funeral arrangements? Devoting myself to my wife, my parents, my brothers, my friends, my adorable niece? Writing the book I had always wanted to write? Or was I supposed to go back to negotiating my multiyear job offers?
The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”
I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability — someone expecting to live to 130, or someone thinking his benign skin spots are signs of impending death — doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.
I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment, the cancer is retreating. I have gradually returned to work. I’m knocking the dust off scientific manuscripts. I’m writing more, seeing more, feeling more. Every morning at 5:30, as the alarm clock goes off, and my dead body awakes, my wife asleep next to me, I think again to myself: “I can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”
By Paul Kalanithi : NY Times : January 24, 2014
As soon as the CT scan was done, I began reviewing the images. The diagnosis was immediate: Masses matting the lungs and deforming the spine. Cancer. In my neurosurgical training, I had reviewed hundreds of scans for fellow doctors to see if surgery offered any hope. I’d scribble in the chart “Widely metastatic disease — no role for surgery,” and move on. But this scan was different: It was my own.
I have sat with countless patients and families to discuss grim prognoses: It’s one of the most important jobs physicians have. It’s easier when the patient is 94, in the last stages of dementia and has a severe brain bleed. For young people like me — I am 36 — given a diagnosis of cancer, there aren’t many words. My standard pieces include “it’s a marathon, not a sprint, so get your daily rest” and “illness can drive a family apart or bring it together — be aware of each other’s needs and find extra support.”
I learned a few basic rules. Be honest about the prognosis but always leave some room for hope. Be vague but accurate: “days to a few weeks,” “weeks to a few months,” “months to a few years,” “a few years to a decade or more.” We never cite detailed statistics, and usually advise against Googling survival numbers, assuming the average patient doesn’t possess a nuanced understanding of statistics.
Photo
CreditTucker NicholsPeople react differently to hearing “Procedure X has a 70 percent chance of survival” and “Procedure Y has a 30 percent chance of death.” Phrased that way, people flock to Procedure X, even though the numbers are the same. When a close friend developed pancreatic cancer, I became the medical maven to a group of people who were sophisticated statisticians. I still dissuaded them from looking up the statistics, saying five-year survival curves are at least five years out of date. Somehow I felt that the numbers alone were too dry, or that a physician’s daily experience with illness was needed for context. Mostly, I felt that impulse: Keep a measure of hope.
These survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time. For some diseases, the line looks like an airplane gently beginning its descent; for others, like a dive bomber. Physicians think a lot about these curves, their shape, and what they mean. In brain-cancer research, for example, while the numbers for average survival time haven’t changed much, there’s an increasingly long tail on the curve, indicating a few patients are living for years. The problem is that you can’t tell an individual patient where she is on the curve. It’s impossible, irresponsible even, to be more precise than you can be accurate.
One would think, then, that when my oncologist sat by my bedside to meet me, I would not immediately demand information on survival statistics. But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. I hoped she would see me as someone who both understood statistics and the medical reality of illness, that she would give me certainty, the straight dope. I could take it. She flatly refused: “No. Absolutely not.” She knew very well I could — and did — look up all the research on the topic. But lung cancer wasn’t my specialty, and she was a world expert. At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.
Now, instead of wondering why some patients persist in asking statistics questions, I began to wonder why physicians obfuscate when they have so much knowledge and experience. Initially when I saw my CT scan, I figured I had only a few months to live. The scan looked bad. I looked bad. I’d lost 30 pounds, developed excruciating back pain and felt more fatigued every day. My tests revealed severely low protein levels and low blood counts consistent with the body overwhelmed, failing in its basic drive to sustain itself.
For a few months, I’d suspected I had cancer. I had seen a lot of young patients with cancer. So I wasn’t taken aback. In fact, there was a certain relief. The next steps were clear: Prepare to die. Cry. Tell my wife that she should remarry, and refinance the mortgage. Write overdue letters to dear friends. Yes, there were lots of things I had meant to do in life, but sometimes this happens: Nothing could be more obvious when your day’s work includes treating head trauma and brain cancer.
But on my first visit with my oncologist, she mentioned my going back to work someday. Wasn’t I a ghost? No. But then how long did I have? Silence.
Of course, she could not stop my intense reading. Poring over studies, I kept trying to find the one that would tell me when my number would be up. The large general studies said that between 70 and 80 percent of lung cancer patients would die within two years. They did not allow for much hope. But then again, most of those patients were older and heavy smokers. Where was the study of nonsmoking 36-year-old neurosurgeons? Maybe my youth and health mattered? Or maybe my disease was found so late, had spread so far, and I was already so far gone that I was worse off than those 65-year-old smokers.
Many friends and family members provided anecdotes along the lines of my-friend’s-friend’s-mom’s-friend or my-uncle’s-barber’s-son’s-tennis-partner has this same kind of lung cancer and has been living for 10 years. Initially I wondered if all the stories referred to the same person, connected through the proverbial six degrees. I disregarded them as wishful thinking, baseless delusion. Eventually, though, enough of those stories seeped in through the cracks of my studied realism.
And then my health began to improve, thanks to a pill that targets a specific genetic mutation tied to my cancer. I began to walk without a cane and to say things like, “Well, it’s pretty unlikely that I’ll be lucky enough to live for a decade, but it’s possible.” A tiny drop of hope.
In a way, though, the certainty of death was easier than this uncertain life. Didn’t those in purgatory prefer to go to hell, and just be done with it? Was I supposed to be making funeral arrangements? Devoting myself to my wife, my parents, my brothers, my friends, my adorable niece? Writing the book I had always wanted to write? Or was I supposed to go back to negotiating my multiyear job offers?
The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.”
I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability — someone expecting to live to 130, or someone thinking his benign skin spots are signs of impending death — doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility.
But the range of what is reasonably possible is just so wide. Based on today’s therapies, I might die within two years, or I might make it to 10. If you add in the uncertainty based on new therapies available in two or three years, that range may be completely different. Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer.
What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.
I remember the moment when my overwhelming uneasiness yielded. Seven words from Samuel Beckett, a writer I’ve not even read that well, learned long ago as an undergraduate, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.
I am now almost exactly eight months from my diagnosis. My strength has recovered substantially. In treatment, the cancer is retreating. I have gradually returned to work. I’m knocking the dust off scientific manuscripts. I’m writing more, seeing more, feeling more. Every morning at 5:30, as the alarm clock goes off, and my dead body awakes, my wife asleep next to me, I think again to myself: “I can’t go on.” And a minute later, I am in my scrubs, heading to the operating room, alive: “I’ll go on.”
Before I Go: A Stanford neurosurgeon’s parting wisdom about life and time
By Paul Kalanithi : Washington Post : March 12, 2015
In residency, there’s a saying: The days are long, but the years are short. In neurosurgical training, the day usually began a little before 6 a.m., and lasted until the operating was done, which depended, in part, on how quick you were in the OR.
A resident’s surgical skill is judged by his technique and his speed. You can’t be sloppy and you can’t be slow. From your first wound closure onward, spend too much time being precise and the scrub tech will announce, “Looks like we’ve got a plastic surgeon on our hands!” Or say: “I get your strategy — by the time you finish sewing the top half of the wound, the bottom will have healed on its own. Half the work — smart!” A chief resident will advise a junior: “Learn to be fast now — you can learn to be good later.” Everyone’s eyes are always on the clock. For the patient’s sake: How long has the patient been under anesthesia? During long procedures, nerves can get damaged, muscles can break down, even causing kidney failure. For everyone else’s sake: What time are we getting out of here tonight?
There are two strategies to cutting the time short, like the tortoise and the hare. The hare moves as fast as possible, hands a blur, instruments clattering, falling to the floor; the skin slips open like a curtain, the skull flap is on the tray before the bone dust settles. But the opening might need to be expanded a centimeter here or there because it’s not optimally placed. The tortoise proceeds deliberately, with no wasted movements, measuring twice, cutting once. No step of the operation needs revisiting; everything proceeds in orderly fashion. If the hare makes too many minor missteps and has to keep adjusting, the tortoise wins. If the tortoise spends too much time planning each step, the hare wins.
The funny thing about time in the OR, whether you frenetically race or steadily proceed, is that you have no sense of it passing. If boredom is, as Heidegger argued, the awareness of time passing, this is the opposite: The intense focus makes the arms of the clock seem arbitrarily placed. Two hours can feel like a minute. Once the final stitch is placed and the wound is dressed, normal time suddenly restarts. You can almost hear an audible whoosh. Then you start wondering: How long till the patient wakes up? How long till the next case gets started? How many patients do I need to see before then? What time will I get home tonight?
It’s not until the last case finishes that you feel the length of the day, the drag in your step. Those last few administrative tasks before leaving the hospital, however far post-meridian you stood, felt like anvils. Could they wait till tomorrow? No. A sigh, and Earth continued to rotate back toward the sun.
But the years did, as promised, fly by. Six years passed in a flash, but then, heading into chief residency, I developed a classic constellation of symptoms — weight loss, fevers, night sweats, unremitting back pain, cough — indicating a diagnosis quickly confirmed: metastatic lung cancer. The gears of time ground down. While able to limp through the end of residency on treatment, I relapsed, underwent chemo and endured a prolonged hospitalization.
I emerged from the hospital weakened, with thin limbs and thinned hair. Now unable to work, I was left at home to convalesce. Getting up from a chair or lifting a glass of water took concentration and effort. If time dilates when one moves at high speeds, does it contract when one moves barely at all? It must: The day shortened considerably. A full day’s activity might be a medical appointment, or a visit from a friend. The rest of the time was rest.
With little to distinguish one day from the next, time began to feel static. In English, we use the word time in different ways, “the time is 2:45” versus “I’m going through a tough time.” Time began to feel less like the ticking clock, and more like the state of being. Languor settled in. Focused in the OR, the position of the clock’s hands might seem arbitrary, but never meaningless. Now the time of day meant nothing, the day of the week scarcely more so.
Verb conjugation became muddled. Which was correct? “I am a neurosurgeon,” “I was a neurosurgeon,” “I had been a neurosurgeon before and will be again”? Graham Greene felt life was lived in the first 20 years and the remainder was just reflection. What tense was I living in? Had I proceeded, like a burned-out Greene character, beyond the present tense and into the past perfect? The future tense seemed vacant and, on others’ lips, jarring. I recently celebrated my 15th college reunion; it seemed rude to respond to parting promises from old friends, “We’ll see you at the 25th!” with “Probably not!”
Yet there is dynamism in our house. Our daughter was born days after I was released from the hospital. Week to week, she blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks of her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.
Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence — and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoise-like approach. I plod, I ponder, some days I simply persist.
Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.
Yet one thing cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters — but what would they really say? I don’t know what this girl will be like when she is 15; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.
That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.
This article is republished with the permission of Stanford Medicine magazine. Its author, Stanford University neurosurgeon Paul Kalanithi, died Monday March 9, 2015 at the age of 37. Here is his obituary.
By Paul Kalanithi : Washington Post : March 12, 2015
In residency, there’s a saying: The days are long, but the years are short. In neurosurgical training, the day usually began a little before 6 a.m., and lasted until the operating was done, which depended, in part, on how quick you were in the OR.
A resident’s surgical skill is judged by his technique and his speed. You can’t be sloppy and you can’t be slow. From your first wound closure onward, spend too much time being precise and the scrub tech will announce, “Looks like we’ve got a plastic surgeon on our hands!” Or say: “I get your strategy — by the time you finish sewing the top half of the wound, the bottom will have healed on its own. Half the work — smart!” A chief resident will advise a junior: “Learn to be fast now — you can learn to be good later.” Everyone’s eyes are always on the clock. For the patient’s sake: How long has the patient been under anesthesia? During long procedures, nerves can get damaged, muscles can break down, even causing kidney failure. For everyone else’s sake: What time are we getting out of here tonight?
There are two strategies to cutting the time short, like the tortoise and the hare. The hare moves as fast as possible, hands a blur, instruments clattering, falling to the floor; the skin slips open like a curtain, the skull flap is on the tray before the bone dust settles. But the opening might need to be expanded a centimeter here or there because it’s not optimally placed. The tortoise proceeds deliberately, with no wasted movements, measuring twice, cutting once. No step of the operation needs revisiting; everything proceeds in orderly fashion. If the hare makes too many minor missteps and has to keep adjusting, the tortoise wins. If the tortoise spends too much time planning each step, the hare wins.
The funny thing about time in the OR, whether you frenetically race or steadily proceed, is that you have no sense of it passing. If boredom is, as Heidegger argued, the awareness of time passing, this is the opposite: The intense focus makes the arms of the clock seem arbitrarily placed. Two hours can feel like a minute. Once the final stitch is placed and the wound is dressed, normal time suddenly restarts. You can almost hear an audible whoosh. Then you start wondering: How long till the patient wakes up? How long till the next case gets started? How many patients do I need to see before then? What time will I get home tonight?
It’s not until the last case finishes that you feel the length of the day, the drag in your step. Those last few administrative tasks before leaving the hospital, however far post-meridian you stood, felt like anvils. Could they wait till tomorrow? No. A sigh, and Earth continued to rotate back toward the sun.
But the years did, as promised, fly by. Six years passed in a flash, but then, heading into chief residency, I developed a classic constellation of symptoms — weight loss, fevers, night sweats, unremitting back pain, cough — indicating a diagnosis quickly confirmed: metastatic lung cancer. The gears of time ground down. While able to limp through the end of residency on treatment, I relapsed, underwent chemo and endured a prolonged hospitalization.
I emerged from the hospital weakened, with thin limbs and thinned hair. Now unable to work, I was left at home to convalesce. Getting up from a chair or lifting a glass of water took concentration and effort. If time dilates when one moves at high speeds, does it contract when one moves barely at all? It must: The day shortened considerably. A full day’s activity might be a medical appointment, or a visit from a friend. The rest of the time was rest.
With little to distinguish one day from the next, time began to feel static. In English, we use the word time in different ways, “the time is 2:45” versus “I’m going through a tough time.” Time began to feel less like the ticking clock, and more like the state of being. Languor settled in. Focused in the OR, the position of the clock’s hands might seem arbitrary, but never meaningless. Now the time of day meant nothing, the day of the week scarcely more so.
Verb conjugation became muddled. Which was correct? “I am a neurosurgeon,” “I was a neurosurgeon,” “I had been a neurosurgeon before and will be again”? Graham Greene felt life was lived in the first 20 years and the remainder was just reflection. What tense was I living in? Had I proceeded, like a burned-out Greene character, beyond the present tense and into the past perfect? The future tense seemed vacant and, on others’ lips, jarring. I recently celebrated my 15th college reunion; it seemed rude to respond to parting promises from old friends, “We’ll see you at the 25th!” with “Probably not!”
Yet there is dynamism in our house. Our daughter was born days after I was released from the hospital. Week to week, she blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks of her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.
Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence — and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoise-like approach. I plod, I ponder, some days I simply persist.
Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.
Yet one thing cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters — but what would they really say? I don’t know what this girl will be like when she is 15; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.
That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing.
This article is republished with the permission of Stanford Medicine magazine. Its author, Stanford University neurosurgeon Paul Kalanithi, died Monday March 9, 2015 at the age of 37. Here is his obituary.
Chemotherapy tied to worse deaths in terminal cancer patients, study finds
By Deborah Kotz / Globe Staff / March 6, 2014
With the death this week of Yale surgeon and award-winning author Dr. Sherwin Nuland, the New York Times obituary attributed his 1993 best-selling book “How We Die” as the catalyst that spurred conversations about end-of-life care.
Yet 20 years later, many doctors still have a hard time initiating such conversations with their patients—especially those dying before their time from, say, metastatic cancer. Proof of this comes from a troubling new Dana-Farber Cancer Institute study, which found that more than half of end-stage cancer patients receive chemotherapy during the last few months of their life, and those who received such treatment were more likely to die in a hospital intensive care unit, hooked to a ventilator, rather than at home as they would have preferred.
These patients were also less likely to have discussed their end of life wishes with their oncologist compared to other end-stage cancer patients who opted not to continue chemotherapy, according to the study of terminally ill cancer patients published this week in the British Medical Journal.
“There’s a subtle dance that happens between oncologist and patient,” said study leader Dr. Alexi Wright, an assistant professor of medicine at Dana-Farber, “where doctors don’t want to broach the subject of dying, especially in younger patients, because it makes those patients think we’re giving up on them.”
She and her colleagues followed 386 terminally ill cancer patients and found that the 56 percent who took chemotherapy drugs to relieve pain and keep their tumors in check tended to be younger, better educated, richer, and more optimistic about their prognosis. They were also less likely than those who opted not to continue chemo to have instructions detailing what lifesaving measures should and should not be taken when their death was imminent.
The study volunteers died an average of four months after entering the study, and those who took cancer drugs during the study didn’t live any longer than those who didn’t.
They did, however, receive more painful and costly medical interventions, which led to a worse death: 65 percent died in their preferred place compared to 80 percent of those who stopped treatments. Those taking chemotherapy were more likely to die in a hospital intensive care unit than at home and were more likely to get resuscitated and placed on a ventilator. Not surprisingly, most were referred to hospice very late in the game, within a week before they died.
“Doctors are human beings,” Wright said, “and sometimes we fail to have the clarity to determine when our patients are dying. And even when we do, we may not want to give up on treatments as this study suggests is the case.”
She’s hoping that the findings will raise awareness to help doctors understand that administering chemotherapy to terminally ill patients doesn’t just give them a false sense of hope but also raises the likelihood of denying them a more peaceful death. Nuland died at age 83 of prostate cancer—at his home in Hamden, Conn.
By Deborah Kotz / Globe Staff / March 6, 2014
With the death this week of Yale surgeon and award-winning author Dr. Sherwin Nuland, the New York Times obituary attributed his 1993 best-selling book “How We Die” as the catalyst that spurred conversations about end-of-life care.
Yet 20 years later, many doctors still have a hard time initiating such conversations with their patients—especially those dying before their time from, say, metastatic cancer. Proof of this comes from a troubling new Dana-Farber Cancer Institute study, which found that more than half of end-stage cancer patients receive chemotherapy during the last few months of their life, and those who received such treatment were more likely to die in a hospital intensive care unit, hooked to a ventilator, rather than at home as they would have preferred.
These patients were also less likely to have discussed their end of life wishes with their oncologist compared to other end-stage cancer patients who opted not to continue chemotherapy, according to the study of terminally ill cancer patients published this week in the British Medical Journal.
“There’s a subtle dance that happens between oncologist and patient,” said study leader Dr. Alexi Wright, an assistant professor of medicine at Dana-Farber, “where doctors don’t want to broach the subject of dying, especially in younger patients, because it makes those patients think we’re giving up on them.”
She and her colleagues followed 386 terminally ill cancer patients and found that the 56 percent who took chemotherapy drugs to relieve pain and keep their tumors in check tended to be younger, better educated, richer, and more optimistic about their prognosis. They were also less likely than those who opted not to continue chemo to have instructions detailing what lifesaving measures should and should not be taken when their death was imminent.
The study volunteers died an average of four months after entering the study, and those who took cancer drugs during the study didn’t live any longer than those who didn’t.
They did, however, receive more painful and costly medical interventions, which led to a worse death: 65 percent died in their preferred place compared to 80 percent of those who stopped treatments. Those taking chemotherapy were more likely to die in a hospital intensive care unit than at home and were more likely to get resuscitated and placed on a ventilator. Not surprisingly, most were referred to hospice very late in the game, within a week before they died.
“Doctors are human beings,” Wright said, “and sometimes we fail to have the clarity to determine when our patients are dying. And even when we do, we may not want to give up on treatments as this study suggests is the case.”
She’s hoping that the findings will raise awareness to help doctors understand that administering chemotherapy to terminally ill patients doesn’t just give them a false sense of hope but also raises the likelihood of denying them a more peaceful death. Nuland died at age 83 of prostate cancer—at his home in Hamden, Conn.
