It’s Time to Talk About Death- An excellent op-ed piece from the NY Times march 28, 2020 from Dr. Sunita Puri

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LOS ANGELES — Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit. Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

1. ·       What is most important to me in my life? (My family and pets, and the ability to write and doctor).
2. ·       What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
3. ·       What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
4. ·       Who is best positioned to speak on my behalf? (My brother).
5. ·       Who would I not want involved in decision making? (Family living abroad).
6. ·       Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
7. ·       What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do. 

Care for Everyone at the End of Life

There has been a great deal of anxiety being expressed recently about end of life care. In newspaper articles and blogs, people wonder if health care reform will lead to limiting care, leading to euthanasia for old people the weak and impaired. Much of this type of news instills fear in those who are elderly or infirm, and in their families. Given the state of health care in this country, the information and the fear are both misguided and misplaced.

Sick people who are dying are usually cared for in a hospital, and hospital care is expensive. As long as people are fighting their illnesses, they will be in hospitals at the end of life, and it will be expensive even if they die anyway.

The problem with today’s health care system and any proposed system that I have seen is that we focus too much on the health care and not enough on the patient’s desires and quality of life.

The question that you should be asking, as a patient or potential patient, if you are old and infirm, if you are in the late stages of cancer, or just thinking ahead is, “If I am going to die (from this illness), how and where do I want to die?”

This might seem an odd question, but it is one well worth contemplating. Everyone is going to die. Many people don’t have a chance to plan for it, but some do. It would be a shame to waste the opportunity if you have the chance. How can you tell? When the doctors tell you that “the situation is very serious,” that there is “not much more” that they can do, that you should “reconsider” whether you want aggressive testing and treatments, then they are trying to give you a hint. It is time to start listening and thinking about it. Don’t ignore the opportunity.

Do you want to die in a hospital bed, surrounded by machines and nurses and doctors and technicians, where your family has limited visiting opportunities and can hardly get to the bedside, or, do you want to die at home (or in a home like atmosphere) surrounded by friends and family and with only enough care givers to make everyone comfortable with the process?

My aunt was diagnosed with pancreatic cancer. She was 70 years old and had chronic lung disease from smoking. She chose to try curative surgery even though it only works 5% of the time. She spent the last month of her life in the intensive care unit. She never got off the respirator after surgery. She never woke up. If she had not had surgery, she could have lived another 3 to 6 months awake and with her family.

A patient had a spot on his lung. He was 80 years old and not very healthy. He could have just ignored it, but he chose to have an open biopsy done by a specialist in another city. He developed pneumonia and died after the procedure. The spot may have even been benign, and he could have lived several more years. 

Sometimes the choice for medical tests and treatment is the wrong choice. There is an intriguing study showing that some patients with terminal disease who choose Hospice care - that is end-of-life, non-aggressive, palliative care - actually live longer than patients who choose to continue receiving medical treatment for similar conditions. They lived an average of 29 days longer! I think that many doctors are not surprised by this, but patients are.

There are some very famous people who chose to die at home. The late Pope John Paul II died, “in his residence.” I am not sure what that means exactly, but CNN reported that “despite his precarious health, the pope had decided to remain in his residence at the Vatican, rather than returning to Gemelli hospital in Rome.” To me, it means that the Pope, who had been in “precarious health” made the decision, again according to CNN,  not to have aggressive medical care at the end of his life “after his heart and kidneys started to fail in the wake of a urinary tract infection.” Does this mean he “chose death” as some would say? I don’t know, and I can’t ask him, but I would say he chose peace rather than war; he chose to accept his fate as a mortal human being rather than struggle against it.

Another advocate of death at home was Jackie Onassis. According to the May 1994 NY Times, she “began being treated for non-Hodgkin's lymphoma in early January and had been undergoing chemotherapy and other treatments in recent months.” The account further states that “Mrs. Onassis entered the New York Hospital-Cornell Medical Center for the last time on Monday but returned to her Fifth Avenue apartment on Wednesday after her doctors said there was no more they could do.... Mrs. Onassis was surrounded by friends and family since she returned home from the hospital on Wednesday.” She died a day later, May 19, 1994. She was only 64 years old.

What did these people know? For one thing, they accepted the inevitability of death. For another, they took control at the end of their lives and chose the place, if not the time, of their deaths.  

What do doctors know? We know that we will not usually stop providing additional services, no matter how futile, if a family or patient continues to demand more. We almost never stop of our own accord. Doctors give patient autonomy very high regard in medical care. Patient autonomy means that the patient decides when to stop.

Doctors often feel bad when they know a patient is going to die and the family just can’t seem to accept it, or understand, and we are forced to provide painful and invasive care at the end of the patient’s life. As in the Hospice study, we know that our procedures, such as chemotherapy, feeding tubes, biopsies, surgery and radiation sometimes hasten a patient’s death and certainly do not make it any more comfortable.

So, to those who are frightened by the thought of a government telling them that they can no longer have medical treatment because they are too old or too sick, I would offer reassurance. Medicare is not going to refuse your treatment at the end of life. Medicare is a government run system which has treated old people for the last 40 years. So far, Medicare continues to provide all the care people need, right up to the end of life.

Instead of worrying about the government interfering in your death, take control of your life, yourself, now. Decide now how you want to be treated at the end of life. You can discuss this question with your doctor and with your family and friends. In fact, many health insurers allow payments to doctors to discuss end of life care even though this idea has caused much of the uproar about “pulling the plug,” and “death panels.” 

Once you have made a decision, and there is no rush in most cases, you should let your doctor and your family know your wishes. There are forms you can fill out, to keep at home and carry with you, which will let every caregiver know your wishes.

If you want “everything done” right up to the last minute, say so. Tell your family and friends and write it down. So far, even with government-sponsored health care, you will get what you ask for.

Jef Sneider, MD

Syracuse, NY

August 2009

Dementia, Long Term Care and Feeding

Since my last post, I have given a lot of thought to the plight of my patients with dementia. My approach is to ask the question, "What if I got dementia?" How would I want to be treated? In addition, there have been recent articles and even books built on the observation that "physicians die differently" than the rest of the population. We are less likely to have terminal chemotherapy, less likely to die in a hospital or intensive care unit, and more likely to die at home. Perhaps the reason is that doctors have given a lot of thought to issues of illness, ageing and dying whereas most people have not. Physicians also understand the workings of the modern medical system - what it can and can't do - much of which I described in my previous blog, at least as it related to the person with dementia. So, I humbly submit that my thoughts on this issue may be timely and welcomed by others.

For example, as I noted before, I have seen the excellent nursing staff and aids in a nursing home keep a patient with severe advanced dementia alive for years, including patients admitted to the nursing home from a hospital with hospice care. Basic nursing care and good hygiene are necessary to keep someone comfortable and to prevent skin infections, but what about feeding? Tube feeding in the face of advancing Alzheimer's dementia has not been shown to prolong life. Patients can still aspirate and get pneumonia even if they are not actively eating food or swallowing liquids. A tube feed is not the answer.

What about the patient who is just beginning to refuse meals, who forgets to eat or who actively refuses feedings? Right now I have a patient in a nursing home losing weight. The staff tell me that she "clamps her mouth shut" when they try to feed her. Does she know what she is doing? Is she just not hungry? Is this just a reflex of some kind, or does she want to refuse nourishment?

What if it were me, and I had some vague knowledge of my deteriorating condition, and although I could not speak, I could still control whether to open my mouth and chew food? How could I send a message to my caregivers that I no longer wanted to be fed, that I wanted to be allowed to die? Apparently there is no way, short of using the ability to communicate that I no longer possess, to give such direction.

Let me add a comment here for those who have been lovingly feeding people, patients and loved ones, sometimes for years, sustaining their lives and health. I have tremendous respect for those who give care to people with all sorts of needs and disabilities. I am in awe of the dedication of parents and spouses who provide love and support to their family members and to the nurses and health aids who do the same for strangers. As a physician, I provide some of that care but it is nothing compared to the day to day toil of maintaining hygiene and nourishment for a person who can't take care of themselves. My remarks here are in no way intended to undermine or denigrate the efforts that have been made by others. I am trying to look at the situation from the perspective of the patient, for myself in particular were I to become a patient, starting from the position I am in today with full abilities and faculties.

I think we have to respect each individual's humanity, regardless of their ability to communicate using language and logic. For me, if I get to the point where I am no longer able to feed myself as a result of progressive dementia, I do not want to be fed by tube feed or by hand against my will. Is it possible to express that will by refusing to open my mouth, spitting out food, or refusing to swallow? Possibly. My experience is that in the nursing home or hospital, feeding is appropriately felt to be critically important to preserving life and function. Without a specific instruction not to feed, it will happen, even if the patient makes it difficult.

To overcome the problems inherent in determining when and whether to stop feeding, I would like to propose a simple rule, to be followed by my care givers in the event it is necessary: allow me to eat or not eat on my own without attempts to feed me against resistance that comes out indirectly like those examples above. If it is clear that I want food, am asking for food and water or indicating that I want it, by all means, let's provide it and make it available, even helping to feed when it is requested, but let's not assume that death by starvation is such a bad thing. It may be a very quiet, easy and merciful way to go.

When the time comes, under circumstances that I have described before, my request is to keep me comfortable, with no efforts to prolong life, no feeding tubes, hospitalization or antibiotics, and no forced or even assisted feeding, unless requested. I don't know if others would be comfortable with such an "advance directive," but other health professionals I have spoken with have felt comfortable with it.

The comments in this blog and the one that preceded it may seem morbid or grotesque to those not used to thinking about these issues. I write my comments for my own family and for those who are interested in thinking about how to shape their own lives in a world which is all too ready to shape our lives, and our deaths, for us, even against our own will.

What if I get dementia? A doctor's comments. Read here first.

What if I get dementia?

As a physician who has worked at nursing homes for decades I have watched many patients go through the natural life cycle of Alzheimer’s type dementia. I have seen healthy patients scared about the future. I have seen families struggle with decisions. I have seen caregivers, including doctors and nurses, conflicted about withholding treatment or applying treatment. I have wondered, what would I do if it were me?

As I have aged, I have become aware that my memory is not as good as it once was. I forget names at a rapid rate. I sometimes can’t find words. My typing has become more prone to error. My hand shakes a bit. What if I get Alzheimer's? What if I can’t take care of myself? What if I can’t recognize my wife, my children or my friends and I can’t remember who I am? How would I want to be treated?

Before answering the question, I have to share some of my assumptions with you about life, and medical care, about pain and suffering, and about dying.

I know that I will die, though I feel much the same as Woody Allen, who said, “I’m not afraid of dying, I just don’t want to be there when it happens.” That is a joke, of course. As someone who has practiced meditation, I do want to be there, if possible, when dying, except in cases of trauma where sedation is necessary. Interestingly, the person with Alzheimer's is not there at the end, everyone else is there for you.

There is no effective treatment for Alzheimer's, or most forms of dementia, once the damage has been done and brain function has been lost. You can’t get it back.

Alzheimer’s is a specific form of dementia, and the two terms are often used interchangeably, but are not the same. You can get dementia from Alzheimer’s, from drinking too much alcohol, from a series of strokes, from brain injury due to trauma, from infections like encephalitis, from poisons like nerve gas, and so on. Anything that damages the brain can cause dementia.

Alzheimer's is a specific progressive disease affecting more than the brain. In addition to the dreaded loss of memory, inability to recognize people and confusion about language, and orientation to themselves, their surroundings and other people, people with advanced Alzheimer’s type dementia can’t dress or feed themselves, can’t clean themselves after they go to the bathroom, can’t walk, and often can’t swallow. It is not just that they “forget” how to feed themselves or clean up after a bowel movement, there is a real physical loss of function, like the ability to swallow, that has nothing to do with memory. The progress of the disease covers many different body systems and is inexorable.

Many people maintain their social skills long after the memory has started to slip. A person with no memory for people or recent events can still be pleasant, carry on a coherent conversation and seem to be functioning normally as long as pointed and specific questions are not asked. We will often declare that such people are not competent to make decisions about their own medical care, even though they can tell you how they feel on any given day, or what they want. The ability to understand abstract ideas like “what to do if x,y, or z happens” is lost.

Behavior associated with poor memory, like getting lost, forgetting people and events, seems to come and go, especially in the first few years. It is not unusual for family members to wonder if they are “faking” memory loss because some days are so much better than others. They are not faking.

Personality can change drastically. The nice grandmother can suddenly start swearing like a sailor. The grumpy grandpa can become pleasant and placid. Paranoia, possessiveness, fear of anything new and aggressive behavior can also develop in people who were previously nice and calm.

Currently available medications purport to slow the progression of the disease, and they do, but not much. The drugs are expensive, may have side effects, and it is difficult to tell if they are working in any given patient. Once someone has advanced disease, requiring full support for all activities of daily living, lacking awareness of their surroundings and visitors, there is no point in continuing the drugs, but discontinuing the drugs may cause an acceleration of the downwards course of the disease.

People with Alzheimer’s don’t die from Alzheimer’s, exactly. Like other people with advanced dementia they often die from malnutrition that leads to infections which lead to death. Pneumonia due to choking on food or secretions is a common pathway to death. Urinary tract infections that lead to kidney infections and blood infections are common causes of death. Skin breakdown leading to widespread or deep skin infection is a common and often particularly painful way to go. A broken hip from a fall can lead to a deep vein thrombosis (blood clot) and pulmonary embolism (blood clot to the lung) and death. Any other cause of death, from cancer to heart attack can intervene as well and might be difficult to diagnose and impossible to predict.

(Remember I am giving you my opinion here from personal observation and study.) Death by starvation, especially when the person starving has no hunger and no awareness of their own difficulties, is a painless way to go. A feeding tube in a person who can’t swallow because of dementia, does not prolong life. A patient can still aspirate and die of pneumonia after a feeding tube is in place. Feeding tubes are not usually recommended for patients with Alzheimer’s who cannot swallow safely.

I am amazed by the love and care demonstrated by family members, nurses and other staff in nursing homes and day care centers towards patients with advanced dementia. At the Jewish Home of CNY we have repeatedly taken patients who were thought to be dying, some even on hospice care, and helped them to survive for many years. Our nurses and aids keep people clean and dressed and well fed years after the person has stopped bathing, dressing or feeding themselves.

Nursing home care is very expensive. The majority of the budget for the State of New York is for Medicaid and the majority of Medicaid’s budget is spent on nursing home care. Doctors get less than 4% of the Medicaid budget.

The truth is that no matter how dedicated a family is there is often a point at which caring for an individual with advanced dementia exceeds the ability of the family to cope. In the best cases families proactively look for solutions such as long-term care institutions. In the worst cases, the person with dementia has to break a hip or get skin breakdown, sepsis or pneumonia and end up in the hospital before the family realizes that they can no longer meet the patient’s needs.

There is tremendous guilt in family members who feel that they are expected to care for their mother, father, aunt, uncle, brother or sister when they get sick. Words like “I never want to be in a nursing home” or “I’ll never let you go to a nursing home” have often been spoken. Such promises create unrealistic expectations and more guilt. I never want to be in a nursing home. I never want to be in a car accident. I never want to break a bone. My wishes may not always be fulfilled when I am trying to determine a future that I can’t understand or control. I accept that and don’t blame my family for what happens.

People have often not given clear advance directives about how they want to be treated should they become incapacitated, leaving their families to guess what they would have wanted. Most family members have to think what they themselves would want, not what their loved one would have wanted, because there is just not enough information.

In New York State we are fortunate to have the ability to state our advanced directives to our friends and family and to our eventual caregivers, doctors, nurses and institutions about how we want to be treated if we become ill. These advance directives, made by a person of sound mind and confirmed by a physician and witnesses should be legally binding. The sudden appearance of a relative from another state (usually Texas or California) who has a different idea about how to do things should not change the care plan if advanced directives are in place.

Doctors and nursing home administrators are very risk averse and don’t want to take chances. If advanced directives are not clear, even if families are not threatening to sue, the unfortunate patient will suffer the results. In the absence of advanced directives, medical care can be like a freight train: slow to start but very difficult to stop. Doctors and administrators can’t decide not to treat someone. Only a patients clear advance directives or a firm and strong courageous family member can do it, and only if the entire family agrees.

The worst thing that can happen to a patient with advanced dementia, in my opinion, is the intervention of aggressive medical care, with intensive care being the worst of the worst. Needle sticks, uncomfortable and dangerous tests, strange environments, sleep deprivation, dangerous medications and the ever present risk of medical errors makes hospitalization and intensive care very dangerous and uncomfortable for patient and family alike.

The comments above reflect my beliefs, based on years of observation. These are the assumptions I am using to determine how I want to be treated if I should ever develop dementia. You may have your own set of assumptions, but unless you have extensive years of medical training and experience in geriatrics, I would suggest that my assumptions are good ones to start with. At any rate, these assumptions plus an understanding of the world derived from the study of Buddhism, especially Zen, have given me comfort with change, uncertainty and the inevitable “unsatisfactoriness” of life. All of this informs my feelings about how I would want to be treated if I developed advanced dementia, and it is very different from how most of my patients with dementia are treated.

Let’s start with the extreme example and work backwards. Not all of the following factors need to be present, but if I am in a nursing home suffering the end stage of dementia; if I don’t recognize my wife or my kids; if I don’t know where I am; if I am having trouble eating and need to be fed; if I am having trouble swallowing; if I am having trouble walking and need to be in a wheelchair; if I am often confused and sometimes uncomfortable emotionally or physically; if I sometimes get restless or combative with my caregivers because I don’t understand what is going on; if I sundown; if I am at risk for falling -  if many or most of these qualities are present then I think the instructions for my caregivers should be clear: keep me comfortable, do not do any routine medical tests, give me only those medications necessary to keep me comfortable physically, and allow a natural death. If you think I have a urinary tract infection, do not check a urine sample. Don’t do any blood tests. Do not prescribe antibiotics. Under no circumstances send me to a hospital. If I have pneumonia, give me oxygen, morphine if necessary but no antibiotics. Pretend that I am at home and it is 1850, but don’t let the doctors bleed me or cup me! Do not over sedate me. There is a tendency to think people are suffering at the end of life even when they are simply dying. I do not want to be sedated unless it is necessary to protect myself or others from harm. In today’s terms, using a MOLST form, I would be DNR, DNI, no feeding tube, no IV, no antibiotics, no hospitalization, comfort measures only.

The difficult decisions usually start before the patient reaches the scenario above. There are usually several hospitalizations for complicated bladder or kidney infections, pneumonia from choking on secretions or food, possibly a broken bone, even a broken hip. The patient with dementia can be treated through such emergencies, can tolerate hip surgery, and then go to a nursing home for “rehab” or long term care if the family can’t handle it any more.

Working backward from the extreme scenario, I see that there is not much difference. When I get to the point where my physician feels that I cannot make my own decisions any more because of dementia, my advance directives should be those listed above. DNR, DNI, no feeding tube, no IV medications or fluids, no antibiotics, no hospitalization, comfort measures only. Minimize sedation unless I am a danger to myself or others. Stop doing tests. Stop drawing blood. Stop all unnecessary medications and treat only to keep me comfortable. Do not treat to prolong my life.

Pretend I am that old Indian chief in Little Big Man, who said, “It is a good day to die.”  He just went to the top of the mountain to lie down and wait for it. We don’t need a doctor to die. Since we have no control over when and where it will happen, we have to be patient, enjoy the time we have, and live on. I would prefer to have my family by my side at home, or in a nursing home, rather than a hospital ICU. I realize that I may not have that choice, or that ending. As Yoda once said, “Difficult to see. Always in motion is the future.” In that case I will take what comes, but if dementia is in my future and my family is struggling with decisions about my care, above are my directives. I know they will be followed.

Jef Sneider, MD

August 2013