"Talking about death will never be easy, but it is increasingly necessary. As medical technology advances, there will be more and more we can do — but it’s not always clear there’s more we should do. Only through earlier, deeper conversations can we ensure that what we want is what we get. And only by acknowledging our gaps can we ensure everyone, everywhere gets it."
Dhruv Khullar, M.D.

When Treating Cancer Is Not an Option


By Jane E. Brody : NY Times : November 19, 2012


When my husband learned he had advanced lung cancer, he didn't even want to speak to an oncologist about chemotherapy. He saw no point in treatment that could not cure him and might make him feel worse.

Not so, though, for a majority of patients diagnosed with cancers of the lung or colon that have spread well beyond their original site and are currently not curable by any drugs in the medical armamentarium. Most patients with these so-called stage 4 cancers who choose to undergo chemotherapy seem to believe, incorrectly, that the drugs could render them cancer-free.

That is the finding of a recent national study of nearly 1,200 patients with advanced cancers of the lung or colon. Overall, 69 percent of those with stage 4 lung cancer and 81 percent of those with stage 4 colon cancer failed to understand "that chemotherapy was not at all likely to cure their cancer," Dr. Jane C. Weeks, an oncology researcher at the Dana-Farber Cancer Institute in Boston, and colleagues reported in The New England Journal of Medicine.

When patients do not understand the limitations of such treatment, their consent to undergo it is not truly informed, the authors concluded.

This is not to say that chemotherapy is pointless when cancer is far advanced. Various drugs, some with limited toxicity, can be used as palliatives, perhaps shrinking tumors temporarily to relieve symptoms, slowing the cancer's growth and prolonging the lives of some patients.

But aggressive chemotherapy when death is but weeks or months in the offing can seriously compromise the quality of patients' remaining time and may delay their preparations for the end of life, to the detriment of both patients and their families.

"If you think chemotherapy will cure you, you're less open to end-of-life discussions," Dr. Weeks said in an interview.

When patients pursue chemotherapy under the false belief that they still have a chance for a cure, it often delays their transition to the comfort care of hospice. When patients spend only a few days or a week in hospice, caretakers don't have enough time to get to know them and their families and offer the physical, emotional and practical benefits hospice can provide.

Dr. Weeks said continued chemotherapy involves more trips to the hospital, blood draws and X-rays, whereas hospice attends to patients' symptoms and concerns, and encourages them to leave meaningful legacies. When my husband entered hospice after two miserable weeks in the hospital undergoing palliative radiation, he experienced such relief that he said cheerfully, though in jest, "What if I decide I want to live?" and then enjoyed a treasured last visit with two of his grandchildren.

'Optimistic Bias'

Communication is a two-way street; doctors and patients alike contribute to patients' failure to appreciate medicine's limited ability to treat advanced cancer.

In an editorial accompanying the journal report, Dr. Thomas J. Smith and Dr. Dan L. Longo pointed out that "people have an optimistic bias." Despite a grim prognosis, this bias prompts patients to believe treatment can cure them.

"Even with repeated discussions, about one-third of patients are not able to say they have a disease from which they will die in a year or so," Dr. Smith, an oncologist and director of palliative care at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, said in an interview.

"Our job is not to force them into acceptance but to encourage them to plan for the worst while hoping for the best," Dr. Smith said. "Such patients have better outcomes - less depression and less distress, and they're more likely to die comfortably at home."

Cultural and racial factors, and most likely religious beliefs, influence acceptance of the futility of continued treatment, Dr. Weeks said. In her study, nonwhite and Hispanic patients were more likely than whites to believe that chemotherapy could cure them. But surprisingly, patients' educational level, degree of disability and participation in decision-making were not associated with inaccurate beliefs about chemotherapy.

What can make a huge difference, Dr. Smith said, is how and how often doctors discuss options with patients and describe the potential of continued treatment. He and Dr. Longo suggested that practitioners master "the conversation known as 'ask, tell, ask,' which consists of asking patients what they want to know about their prognosis, telling them what they want to know, and then asking, 'What do you now understand about your situation?' "

Among the questions Dr. Smith said doctors should be asking are, "How much do you want to know about your cancer? What do you know about your cancer? Who would you like to include in discussions about your care? Would you like me to write down the important points? What is important to you? What are you hoping for? Who are your other doctors so that I can communicate with them?"

Continuing Discussion

Finally, he said, rather than asking the patient "do you have any questions?" the doctor should ask, "Now that we have discussed this, what is your understanding of your situation?" And rather than having this conversation only once, Dr. Smith said, "It should be repeated at every transition point."

He and Dr. Longo also recommend that oncologists state the patient's prognosis at the first visit, appoint someone in the office to discuss advance directives, schedule a hospice-information visit, and offer to discuss prognosis and coping at each transition.

Using this approach, practitioners in the US Oncology Network, a group of community-based oncology physicians, have doubled the time patients spend in hospice, decreased costs, alleviated patients' symptoms, reduced stress on caregivers and often lengthened survival, Dr. Smith said. Various studies have shown that cancer patients in hospice live weeks to months longer than comparable patients not in hospice care.

When doctors fail to give direct, clear information, Dr. Smith suggests that patients ask, "What is my prognosis, really? What are my options? Can I meet with the palliative care and hospice teams?"

He noted, "This is the hardest conversation for doctors to have. A lot of doctors wait for someone to bring it up." If the patient does not, then a family member can initiate the needed discussion.


Message from a dying patient
By Dr. Suzanne Koven  | Boston Globe : March 17, 2014


My patient, Janis, is dying. She does not mind me telling you this. In fact, she wants you to know. She also wants you to know what you can do to help yourself when your turn comes. Because it will.

Janis and I were born a few months apart and we have kids about the same ages. We’re both in health care — she’s a nurse. For several years our annual visits consisted of a quick update of her few medical problems, a routine exam, and a chat about raising children, juggling work and family, and finding time to exercise (an avid runner, Janis seemed, unlike me, to have figured this one out).

Then, in 2010, our paths diverged when Janis was diagnosed with an aggressive form of ovarian cancer. “Everyone who is born holds dual citizenship,” writes Susan Sontag, “in the kingdom of the well and in the kingdom of the sick.” Janis moved to this other kingdom, the land of oncologists and chemo and head scarves and thinking, a lot, about what most of us try to avoid thinking about: death.

The kingdom of the sick is a hard place to be, but Janis is about as well-equipped for it as anyone you’ll ever meet. She’s physically tough — during chemo she kept working, fueled by naps in her car in the hospital lot — and mentally strong or, by her own description, stubborn. She’s got a team of top specialists. She has a supportive husband and two wonderful sons in their 20s, already launched in their careers. Janis also has deep religious faith, and finds comfort in knowing that she will go to heaven and be reunited there with loved ones.

But even with all these assets, Janis needed help — a particular kind of help she wished she’d gotten sooner and which she’d like you to know about in case you or a family member become seriously ill: palliative care.

Last spring, Janis’s new oncologist, Dr. Richard Penson, referred her to Dr. Vicki Jackson, the chief of Palliative Care at Mass General. The referral freaked out Janis a little. Was Dr. Penson trying to tell her that he didn’t think the treatment she was about to start would be successful? But Janis had read an article about palliative care and a relative had had a positive experience with it, so she agreed.

After meeting with Jackson, whom Janis calls Vicki, Janis realized that, contrary to common belief, palliative care is not synonymous with giving up hope. Nor does it represent an abandonment of patients by the physicians treating them. “I didn’t feel abandoned at all,” Janis says about Dr. Penson’s referral. “I felt more cared for.”

Palliative care is comprehensive, interdisciplinary treatment of the physical and emotional suffering of people who are seriously ill. Sometimes confused with hospice, palliative care is not exclusively for people at the end of their lives. Nor is it only for people with cancer. The specialty was conceived by Dame Cicely Saunders, a British nurse, social worker, and physician. Saunders began her work in hospice, but branched out to address what she called the “total pain” of patients: physical, psychological, social, and spiritual. Palliative care has been shown to improve the quality of and even prolong the lives of the very ill.

At first, Janis met with Vicki about once a month. They focused on controlling Janis’s abdominal pain. But Vicki also started asking Janis hard questions: how it felt to be ill, to be facing death. These questions didn’t shock Janis. She told me that she knew from the time of her diagnosis that cancer would shorten her life. That knowledge didn’t keep her from pursuing treatment or from hoping that the treatment would work. Janis appreciated that Vicki understood these seemingly conflicting thoughts.

As the months went by, and Janis’s cancer progressed, she met with Vicki more frequently. Their sessions were sort of like psychotherapy, Janis told me, but included a more strategic element. For example, Vicki helped Janis decide when to begin planning her funeral (sooner rather than later). Janis also felt comfortable talking with Vicki about what her final moments would be like. As a nurse, Janis had witnessed deathbed vigils and the final breaths known as “the death rattle.” An independent person who dislikes burdening others, Janis hates the idea of exposing her family to such a scene. Vicki has assured her it can be avoided.

In retrospect, Janis realizes she would have benefited from this kind of coaching years ago. Once, when she was in remission, a family member was dying of cancer. Janis was well, and, since she’s a nurse, it would have been natural for her to step in and provide care. But she didn’t feel up to it — not so much physically, but emotionally. She was in a brief respite from “Cancerland,” she told me, and she wanted to enjoy it. But she felt guilty, and someone like Vicki would have been very helpful sorting through all that.

I visit Janis in hospice and she is alert and animated. She laughs, she cries, she has a lot to say. She seems, in many ways, not so different than the healthy and vibrant woman I used to see once a year. She seems like Janis. I tell her I cannot imagine myself, in her position, being so brave. She tells me she wouldn’t be, if not for palliative care.

If she’d never met Vicki, Janis says, “I think I’d be in the fetal position, in this bed. But I’m still up, I’m walking around, I’m coherent. There’s just something that’s driving me. Part of it is who I am, but another part of it is the skills that Vicki has provided me with.”

I ask Janis if I can do anything for her and, to my surprise, she says yes. She asks me to write a column telling people that palliative care can be extraordinarily helpful. She asks me to remind doctors to refer patients early, at diagnosis.

Janis wants us to know that it’s possible, until the very end of our lives, to live.

Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. Read her blog on Boston.com/Health.


Aiding the Doctor Who Feels Cancer’s Toll


By Jane E. Brody : NY Times : November 26, 2012


The woman was terminally ill with advanced cancer, and the oncologist who had been treating her for three years thought the next step might be to deliver chemotherapy directly to her brain. It was a risky treatment that he knew would not, could not, help her.

When Dr. Diane E. Meier asked what he thought the futile therapy would accomplish, the oncologist replied, "I don't want Judy to think I'm abandoning her."

In a recent interview, Dr. Meier said, "Most physicians have no other strategies, no other arrows in their quiver beyond administering tests and treatments."

"To avoid feeling that they've abandoned their patients, doctors throw procedures at them," she said.

Dr. Meier, a renowned expert on palliative care at Mount Sinai Medical Center in New York, was the keynote speaker this month at the Buddhist Contemplative Care Symposium, organized by the New York Zen Center for Contemplative Care and the Garrison Institute. She described contemplative care as "the discipline of being present, of listening before acting."

"Counter to how the American medical system is structured, which pays for what gets done," she said, "its approach is, 'Don't just do something, stand there.' "

But the idea is not to do just that. Rather, she said, the goal is to "restore the patient to the center of the enterprise."

Under the Affordable Care Act, she said, unnecessary procedures may decline as more doctors are reimbursed for doing what is best for their patients over time, not just for administering tests and treatments. But more could be done if physicians were able to step away from the misperception that everything that can be done should be done.

Dr. Meier's question prompted Judy's doctor to realize that what his patient needed most at the end of her life was not more chemotherapy, but for him to sit down with her, to promise to do his best to keep her comfortable and to be there for the rest of her days.

Doctors Suffer, Too

Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often grieve with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.

Visits may be reduced to a quick review of the medical chart, and phone calls may not be returned. Even though their doctors are still there, incurably ill patients may feel neglected and depressed. Dr. Michael K. Kearney, a palliative care physician at Santa Barbara Cottage Hospital, told the Contemplative Care conference that doctors, especially those who care for terminally ill patients, are subject to two serious forms of occupational stress: burnout and compassion fatigue.

He described burnout as "the end stage of stresses between the individual and the work environment" that can result in emotional and physical exhaustion, a sense of detachment and a feeling of never being able to achieve one's professional goals.

He likened compassion fatigue to "secondary post-traumatic stress disorder, or vicarious traumatization - trauma suffered when someone close to you is suffering."

A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient's pain, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying. Compassion fatigue can lead to burnout.

In one study of 18 oncologists, published in 2008 in the Journal of Palliative Medicine, those who saw their role as both biomedical and psychosocial found end-of-life care very satisfying. But those "who described a primarily biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease and an absence of collegial support," the authors noted.

Healing the Healer

For doctors at risk of becoming overwhelmed by the stresses of their jobs, Dr. Kearney recommends adopting the time-honored Buddhist practice of "mindfulness meditation," which involves cultivating mental techniques for stress reduction that are native to all of us but practiced by too few. He likened meditation to "learning to breathe underwater, or finding sources of renewal within work itself."

To achieve it, a person sits quietly, paying attention to one's breathing and whenever a distracting thought intrudes, turning one's attention back to the sensation of breathing. This can help calm the mind and prepare it for a clearer perspective.

Dr. Kearney said this practice could help doctors "really pay attention and be tuned into their patients and what the patients are experiencing."

"Patients, in turn," he said, "experience a doctor who's not just focused on a medical agenda but who really listens to them."

He said mindfulness meditation helps doctors become more self-aware, empathetic and patient-focused, and to make fewer medical errors. It enables doctors to notice what is going on within themselves and to consider rational options instead of just reacting.

"It's like pressing an internal pause button," Dr. Kearney said. "The doctor is able to recognize he's being stressed, and it prevents him from invoking the survival defense mechanisms of fight ('Let's do another course of chemotherapy'), flight ('There's nothing more I can do for you - I'll go get the chaplain') and freeze (the doctor goes blank and does nothing)." Such reactions can be highly distressing to a dying patient.

When a patient asks for the impossible, like "Promise me I'm not going to die," the mindful doctor is more likely to step back and say, "I can promise you I'll do everything I can to help you. I'm going to continue to care for you and support you as best as I can. I'll be back to see you later today and again tomorrow," Dr. Kearney said.

Although Dr. Kearney does mindfulness meditation for 30 minutes every morning, he said as little as 8 to 10 minutes a day has been shown helpful to practicing physicians.

In addition, doctors can factor moments of meditation into the course of the workday - say, while washing their hands, having a snack or coffee or pausing before entering the next patient room to focus on breathing.

To deal with the emotional flood that can come after a traumatic event, he suggested taking a brief timeout or calling a colleague to say "I need a walk."

This is the second of two columns about communication and cancer. Read the first: "When Treating Cancer Is Not an Option"

Myths About the Dying Process
Patients and caregivers can only make truly informed decisions about end-of-life care when they understand the natural process of dying.
 
Tani Bahti, RN. : Cure : Vol 11: #2: 2012

When people don’t understand the wisdom of the body, they will make decisions based on fear, lack of information or misinformation,” Bahti says. “Knowing and honoring the body’s changes will lead to the best possible choices and care for our loved ones.”
Based on her work as an educator on end-of-life issues, Bahti responds to some common myths about the dying process.

Myth: Dying is painful.

Reality: Pain is not an expected part of the dying process. In fact, some people experience no pain whatsoever. If someone’s particular condition does produce any pain, however, it can be managed by prescribed medications.

Myth: Not drinking leads to painful dehydration.

Reality: Natural dehydration is comfortable and causes the release of endorphins that promote comfort. Unlike in a healthy person, providing artificial fluids near the end of life may actually increase discomfort. Natural dehydration results in less chance of nausea and vomiting, swelling and lung congestion.

Myth: If people don’t eat, they should get a feeding tube or they will starve to
death.

Reality: The needs of the body and its ability to process and utilize food changes in the final months of life. People do not die because they are not eating; they do not eat because they are dying. Complications from forced feeding and the use of tubes might actually hasten death. One of several reasons people will be more comfortable when not eating is that endorphins, the body’s natural pain killers, are released to promote a sense of well-being and comfort.

Myth: Every means necessary must be used to keep people alive or the caregiver is responsible for their death.

Reality: It is the disease that kills people, not the caregiver. When dealing with a progressive or terminal illness, the use of machines may only prolong dying rather than prolong living. Just because we have technology doesn’t mean it’s always the most appropriate care.

Myth: If people are allowed to stay in bed or sleep as much as they want, they are giving up and will die sooner.

Reality: Energy diminishes throughout an illness. To push people beyond their natural limit will not strengthen them and may further deplete what little energy they have left, thus putting increased strain on their already fatigued body.

Myth: People should be conscious until the moment of death. If they are increasingly tired or confused, they are being over-medicated.

Reality: The dying process almost always causes people to sleep more and more, until they drift into a coma. Sleepiness and possible confusion are often due to natural chemical and metabolic changes in the body as it begins to shut down, and they occur even when a person is not taking any medications at all. Proper management of medication can keep people pain-free while not contributing to confusion or hastening the dying process.

Myth: Narcotic pain medications will cause loss of control or even hasten death.

Reality: Adequate pain medication can actually give people more life, providing better rest and therefore more energy and comfort to do things. Inadequate pain control can harm the body and even hasten death due to damage from stress hormones, increased risk of clots or complications of immobility. Properly prescribed medications do not hasten death. They keep people comfortable during the dying process.

Myth: Dying ends in a final struggle.

Reality: In the end, most people essentially “die in their sleep” due to a coma that can last from minutes to days, depending on their disease.

Myth: When people die alone, their loved ones have failed them.

Reality: One of the mysteries of dying is the timing of death itself. Sometimes people will wait for someone to arrive or for everyone to leave the room before they die. Caregivers should make no judgments about whether they were there at the final moment. The patient’s knowledge of their love, not their physical presence, is what is most important.

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The Journey Towards Death
Recognizing the Dying Process

By Angela Morrow, RN : About.com : November 23, 2010


The dying process usually begins well before death actually occurs. Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins:
One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn't need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes

This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren't there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes

The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

• The body temperature lowers by a degree or more.
• The blood pressure lowers.
• The pulse becomes irregular and may slow down or speed up.
• There is increased perspiration.
• Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
• Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
• Speaking decreases and eventually stops altogether.

Journey's End:
A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person's final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. "Cheyne-Stokes"5 breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred.


10 Signs Death Is Near

By Paula Spencer Scott, Caring.com senior editor

What to expect and how to respond to the natural dying process

No one can predict the moment of death. But physicians and nurses involved in end-of-life care know that certain symptoms are usually associated with the body's shutting down. These signs of approaching death are specific to the natural dying process (apart from the effects of particular illnesses the person may have).

Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:

1. Loss of appetite

Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.
Near the very end of life, the dying person may be physically unable to swallow.
How to respond: Don't force-feed; follow the person's cues even though you may be distressed by a loss of interest in eating. Periodically offer ice chips, a popsicle, or sips of water. Use a moistened warm cloth around the mouth and apply balm to the lips to keep them moist and comfortable.

2. Excessive fatigue and sleep

The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water intake contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.
How to respond: Permit sleep. Avoid jostling the person awake. Assume that everything you say can be heard, as the sense of hearing is thought to persist, even when the person is unconscious, in a coma, or otherwise not responsive.

3. Increased physical weakness

A decline in food intake and lack of energy leads to less energy, even for activities like lifting one's head or shifting in bed. The person may even have difficulty sipping from a straw.
How to respond: Focus on keeping the person comfortable.

4. Mental confusion or disorientation

Organs begin to fail, including the brain. Higher-order consciousness tends to change. "Few conditions leave people hyperaware when they're dying," says palliative-care physician Ira Byock, author of Dying Well.
The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can't be seen in the room by others (see Passing Away: What to Expect When Witnessing a Loved One's Death), may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.
How to respond: Remain calm and reassuring. Speak to the person softly, and identify yourself when you approach.

5. Labored breathing

Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out.
Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a "death rattle."
How to respond: The stopped breathing or loud rattle can be alarming to listeners, but the dying person is unaware of this changed breathing; focus on overall comfort. Positions that may help: the head slightly elevated with a pillow, sitting up well-supported, or the head or lying body tilted to the side slightly. Moisten the mouth with a wet cloth and moisturize with lip balm or petroleum jelly.
If there's a lot of phlegm, allow it to drain naturally from the mouth, since suctioning it out can increase its quantity. A vaporizer in the room might help. Some people are given oxygen for comfort. Be a calm, physical presence, stroking the arm or speaking softly.

6. Social withdrawal

As the body shuts down, the dying person may gradually lose interest in those nearby. He or she may stop talking or mutter unintelligibly, stop responding to questions, or simply turn away.
A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behavior. This can last less than an hour or up to a full day.
How to respond: Be aware that this is a natural part of the dying process and not a reflection of your relationship. Maintain a physical presence by touching the dying person and continuing to talk, if it feels appropriate, without demanding anything back. Treasure an alert interlude if and when it occurs, because it's almost always fleeting.

7. Changes in urination

Little going in (as the person loses interest in food and drink) means little coming out. Dropping blood pressure, part of the dying process (and therefore not treated at this point, in tandem with other symptoms), also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-colored.
Loss of bladder and bowel control may happen late in the dying process.
How to respond: Hospice medical staff sometimes decides that a catheter is necessary, although not in the final hours of life. Kidney failure can increase blood toxins and contribute to a peaceful coma before death. Add a bed pad when placing fresh sheets.

8. Swelling in the feet and ankles

As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially. These places, and sometimes also the hands, face, or feet, take on a swollen, puffy appearance.
How to respond: Usually no special treatment (such as diuretics) is given when the swelling seems directly related to the dying process. (The swelling is the result of the natural death process, not its cause.)

9. Coolness in the tips of the fingers and toes

In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the extremities (hands, feet, fingers, toes) become notably cooler. Nail beds may also look more pale, or bluish.
How to respond: A warm blanket can keep the person comfortable, or he or she may be oblivious. The person may complain about the weight of coverings on the legs, so keep them loose.

10. Mottled veins
​
Skin that had been uniformly pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.
How to respond: No special steps need to be taken.

These general signs of impending death can vary in sequence and combination from person to person. If a person is on life support (respirator, feeding tube), the process dying follows can be different. The signs of death listed here describe a natural dying process.

Note: These general signs of impending death can vary in sequence and combination from person to person. If a person is on life support (respirator, feeding tube), the process dying follows can be different. The signs of death listed here describe a natural dying process.

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​Among Doctors, Fierce Reluctance to Let Go 

Paula Span : NT Times : 03-29-2012
The conversation took place two years ago, but Dr. Daniel Matlock still recalls it quite vividly. You tend to remember when a physician colleague essentially brands you a Nazi.

Dr. Matlock, a geriatrician who specializes in palliative care, had been called in to consult when a woman in her 70s arrived at the University of Colorado Hospital, unresponsive after a major stroke.

She’d done what we’re forever chiding people for not doing: She’d drafted a very specific advance directive and had even taken the trouble to have it notarized. It unambiguously said: no life support, no artificial nutrition or hydration, no nursing home.

The ambulance crew had put her on a ventilator — standard procedure. After the palliative team removed it, she was able to breathe on her own, which isn’t uncommon. She even opened her eyes, though she couldn’t track or follow objects and remained unresponsive. That’s when the prominent surgeon directing her care ordered intravenous fluids.

Dr. Matlock, alarmed at this direct contradiction of her preferences, tells the rest of the story in a post on the GeriPal blog, published by geriatricians and palliative care docs at the University of California, San Francisco. After talking with the patient’s sister, who held her medical power of attorney, he called the surgeon to suggest stopping the IV.

“You would have been hung in World War II for doing what you are doing now,” the surgeon said.



Let’s pause to think about that for a moment.

Within a few days, the woman was transferred to a hospice unit, where the IV was removed and she was permitted to die. But Dr. Matlock’s anger at his colleague and his sorrow at the woman’s treatment, or mistreatment, have persisted. “You work so hard to do what’s right for the patient,” he told me.

And he was sure he was right. Administering fluids to a dying patient increases the person’s secretions and makes breathing more difficult, palliative care doctors are taught. “Dehydration is a gentler death, with less agitation,” he said. But quite apart from that, the woman had done everything but stencil “no IV” across her forehead.

A palliative care consultant, however, couldn’t overrule the surgical team whose patient she was. “I went home that night feeling really bad,” Dr. Matlock said.

What prompted his account of this unpleasant exchange, all these months later, was a startling study recently published in The Journal of Palliative Medicine. After surveying nearly 700 physician-members of a national hospice and palliative medicine organization, the authors report that more than half had had at least one experience in the past five years of another physician or health care professional referring to their treatments as “euthanasia,” “killing” or “murder.”

This, despite palliative practices being broadly accepted as legal and ethical, as reducing suffering while honoring patients’ autonomy.

About a quarter of the respondents had heard similar accusations from a personal friend or family member, the study found. And 25 doctors (4 percent of the respondents) had been formally investigated on the question of whether they had hastened a patient’s death.

“It was cathartic for me” to read the study, Dr. Matlock said. “It was helpful to know I wasn’t alone.” But it’s not exactly reassuring news for the rest of us.

We’ve had frequent discussions here of end-of-life care and why the “good death” so many people want proves so elusive. We can, with ample reason, blame physicians who don’t want to talk or think about dying. (A favorite joke among hospice workers, who tend toward a dark sense of humor: Why are coffins nailed shut? To keep oncologists from administering more chemotherapy.)

And physicians have often responded with their own stories of family members who won’t accept that further treatment is futile and urge another operation, another drug, another something.

But here’s another part of the dynamic, apparently: Even when the system works as it’s supposed to, and palliative care specialists arrive like the cavalry to provide comfort care, to stop fruitless and painful interventions and to support what patients want, their own colleagues may brand them murderers.

It takes strong doctors to stand up to that kind of verbal abuse, to explain that courts and ethics committees have approved care that’s intended to reduce suffering, to point out that the patient’s own wishes are paramount. Perhaps they have to be stronger than we know.

“The culture is changing,” Dr. Matlock told me. “But it’s not changed yet.”