ars moriendi

in search of the “good death”

Anyone can see that the best way to go would be something along the lines of George Walker’s death. George died relatively late in life, his death was expected and accepted, and he died with minimal pain, in a comfortable place, amidst loved ones. He did not suffer a long period of illness and disability, his dying was not dragged out, and, perhaps best of all, he died at peace with himself and the world.

Our definition of a “good death” can take on all sorts of wonderful details if we look to those fortunate souls, like George Walker, who climb out of their initial denial, anger, and despair to discover that life’s final scene is not merely bearable, but in many ways remarkable. Given the chance, people who are terminally ill often develop a profound spirituality, come to terms with their pasts, and forgive others and themselves for any wrongdoing. Some go even further, developing a heightened creativity; they start to write poetry or paint pictures or spin pots. And they find themselves flooded with love and a vivid appreciation of life. After all, there is no longer any pretense that life is limitless, no time for trivial undertakings or superficial relationships. In confronting death, these people embrace life and gain extraordinary strength, clarity, and artistry. They are like the leaves that dangle green all summer long and then suddenly take on brilliant, fiery hues just before they drop from the branches and float gently to the ground.

Dennis Potter, the English writer, talked about this clarity shortly before his own death from pancreatic cancer at age 58. “In a perverse sort of way,” he said in a televised interview, “I’m almost serene. I can celebrate life. Things are both more trivial than they ever were and more important than they ever were.

“The ‘now-ness’ of everything is absolutely wondrous,” he said, describing the color, texture, and scent of some lilac blossoms that had bloomed outside his window. “There’s no way of telling you. You have to experience it. But the glory of it. The comfort of it. The reassurance…. You see the present tense. Boy, do you see it and boy, can you celebrate it.”

My own father had much of the same response to life when it grew short. My mother recalls him staring for long moments at the trees and the clouds and even a single blade of grass, holding it up and examining it from different angles, and remarking on how beautiful it all was, how perfect and wonderful every detail of nature and life had become for him. Months before my father died he and my mother took all of us—children, spouses, and grandchildren—to Florida, and I remember that he spent most of that week sitting on a porch just looking at all of us and taking in the sights and sounds and scents. Absorbing it, drinking it all in. My father had spent most of his life waiting impatiently for something else, hurrying to get somewhere else. But now he was so clearly in the moment, relishing each breath of salty air, the warmth of the sun on his skin, and the rhythmic roar of the waves. More than anything else, he was relishing us, his family, as we sat on the beach before him, digging in the sand with bright plastic shovels, looking through beach bags for sun lotion and magazines, calling out to each other from the water, talking and laughing together. It was rich and vivid and, in the end, intensely “now.”

The final days of life can be exceptional for caregivers too because despite the grief, exhaustion, and unimaginable amount of care that is involved, there is often also a deep sense of intimacy and love. Anything trivial or materialistic or selfish disappears, exposing the most stark and touching aspects of life. It is a time of giving and forgiving, of vulnerability and pain, a time when the usual frustrations and annoyances of a day fade and what is truly important becomes clear.

And yet, having said all this, we must be cautious as we try to define a “good death.” While most of us would agree that dying like George Walker did, with love and insight and appreciation, is a glorious way to go, a goal we should all strive for, we must be careful not to establish this as our sole criterion. This celebratory dying, this ability not only to come to terms with death but to grow from it, is laudable, but it is not possible in many cases and, believe it or not, is not even desirable in others.

First of all, there is much about death that we can’t control. Sometimes it comes so quickly that it is impossible to bring the patient home to die, much less to find any glory in the moment. Sometimes it happens unexpectedly, during a rigorous treatment that held real promise. Sometimes illness is so taxing and debilitating that people do not have the mental capacity, the energy, or the interest in making much of the experience. (Although in many cases what makes it so taxing and debilitating is invasive treatment and the lack of appropriate palliative care.)

Some people can’t die at home because of the nature of their illness or because their families cannot or will not, for one reason or another, provide the enormous amount of time and energy that is often required for at-home care. Some patients don’t want to be at home because their home life is stressful or because they actually like being in a hospital where they receive constant attention. (One fellow who knew he was dying spent a year in an intensive care unit because he said he didn’t mind the tubes and interruptions, and he loved watching television all day and being catered to by the staff.)

Furthermore, some people have no interest in a soul-baring, communal kind of death. Some don’t have any interest in talking about death, much less acknowledging it openly, because they have never enjoyed introspection or emotional discussions, or because they simply can’t handle the fact that they are dying. Others may choose to die alone because they are ready to go and have no interest in or energy for seeing others or saying good-byes.

Betty Holden, who witnessed the deaths of her husband and her father, loves nothing better than to think about and discuss emotions, feelings, relationships, and spirituality, and if she becomes terminally ill such talks are likely to play a central role in her remaining days, because they always have in her life. But when her husband lay dying, the two of them never spoke about what was happening to him. This wasn’t because they were denying it; it was partly because his illness developed so quickly and partly because such conversations simply weren’t part of their relationship. That wasn’t how they operated. “It would have been an invasion of his privacy to say, ‘How do you feel about dying, Ben?’ That wasn’t his way,” Betty said. “Ben never spoke about his feelings. He just wasn’t built that way. It’s interesting to me that I didn’t push more, but I can see why I didn’t…. I respected Ben’s not wanting to talk about it.”

The story of an 89-year-old woman who developed leukemia is a good example of just how individual a person’s needs are. She decided that she wanted to die without further medical intervention. She had lost her husband many years before and had no surviving family, but with the help of a local hospice, she died according to her own demands and her own needs. She had grown up in a cold, barren land on the edge of Siberia, and was most at home in a cold and barren environment. Her house was large, but she lived in only three rooms: a dining room, a kitchen, and a bedroom. There was no living room, in fact, there was not a couch or a comfortable chair anywhere in the house. There were no curtains, no decorations, no paintings adorning the walls, no fluffy comforters, no soft pillows—just a single crocheted blanket and hundreds of books piled along the walls. She had a small radio, but no television set. The woman spent her final days sitting erect on a wooden chair in her dining room, the only room that was heated. Her bedroom had no heat and in the middle of winter she slept with the windows open. She had one light, hanging over the dining room table, but she didn’t turn it on. None of this was done for lack of money or in an effort to save money. It was done because this is how she liked to live. This is how she was most comfortable.

“I’d turn on the light to do my exam and then I’d turn it off and we’d sit in the dark and talk,” the hospice nurse told me. “It was cold, very cold. And dark. And it was barren. Her idea of comfort was very different from the standard. But I have to respect what’s established. She wouldn’t have been comfortable with lights and heat and pillows.”

When women tried to reclaim birth they made several mistakes. One of them was assuming that a birth without drugs, surgery, or other intervention, a birth assisted by the father, was the good birth, the birth that everyone should strive for. Some even insisted that a good birth had to occur at home with a midwife, and others thought the birth should be witnessed by friends and family. But, of course, everyone couldn’t have that ideal—some women had complications or risks that didn’t allow for such deliveries—and what’s more, many women didn’t want it. They wanted medications to numb the pain, they wanted all medical precautions in place, they wanted doctors, not midwives, and they wanted or at least didn’t mind the surroundings of a hospital. When these women gave birth to wonderful, healthy babies, they were sometimes made to feel as though they had somehow failed, that the birth wasn’t “natural.” Because the definition of a “good birth” had become so narrow, women who might have gained something from the natural birth movement became alienated from it and even somewhat antagonistic toward it.

We have to be careful how we define our ars bene moriendi. We can’t establish one single path that is best for everyone, for no one path is right for everyone. And we have to be careful not to romanticize death, creating too rosy or too perfect an image that is impossible to achieve.

We also have to realize that most deaths are neither one extreme or the other, celebratory or intolerable, but rather a mix of many things. Even the very best deaths are communal at some moments and extremely lonely at others. Death may be accepted at some times during the process and denied at others. Or it may be acknowledged, but only in unspoken ways, or only with certain people, or only in reference to certain subjects. A person might speak eagerly about cures while she redrafts a will or hands down her engagement ring or double-checks her life insurance policy. Sometimes death is both expected and accepted, but is also manipulated by medical technology for a variety of reasons—so that the patient can live until a certain important event, for example. Humans have an uncanny ability to believe in many things at once, to embrace opposing views, to plan for the worst while they hope, despite all odds, for the best.

Each of us will approach death in our own way, depending upon the nature of our illnesses, our relationships, our needs and, unfortunately, our resources. Some of us will find new strengths and abilities during our final days; some will discover new patience, appreciation, and intimacy; some will fight to the end, drawing on every type of invasive medical care; some will curl up in bed and post a Do Not Disturb sign on the door; some will be angry and aggressive. Most people will do a little bit of everything, enjoying life at some moments, grieving uncontrollably at others, yelling furiously at times, loving intently at other times, talking about a long future while they wrap up business and say their good-byes. The important thing is that we are somewhat prepared and have the support of our loved ones so that we can have the sort of death that is best for us.

We also have to remember that a “good death” is not just about the obvious and the large. It is not just about the move from the hospital to home, or the withdrawal of aggressive medical treatment. What makes death truly “good” is often reflected in seemingly small and subtle things.

In all the talk about overly aggressive medical care, it is easy to assume that appropriate decisions about medical treatment are all we need in order to achieve a good death for ourselves and our loved ones. If we can just reject certain treatments and escape the excesses of medical technology, we will die well, finding peace and dignity and love at the end of life; if we continue with invasive treatments that hold little promise, we will die poorly. Alas, we have whittled down the extraordinary process of concluding our lives to a single issue: whether or not we are “hooked to machines” in our final days or hours. If only life, or death, were so simple.

Dying well is about much more than saying no to a transfusion or a ventilator. It is about much more than receiving an adequate dose of morphine. Dying well is predicated on who we are and how we love and whether we can find it in ourselves to accept and forgive each other. It is founded not so much on big acts, like “pulling the plug,” as much as simple acts—a comment, a look, an embrace, a caress—that help us tie up loose ends and begin the process of letting go. Dying well is not simply about not having what we don’t want, but about having what we do want—who we want to see, what we want to say, what might console us, and how we can celebrate the lives that we have lived. But there is no line on the advance directives form where we are asked to explain that we would like to be held or gently stroked, that we would like our grandchildren to be near, that we hope we will be forgiven for any unkindness we have committed, that we want our loved ones to be familiar and easy with us, that we hope they might even laugh and be joyous in our presence even as we near death.

Dying well is about finding peace in the maelstrom, accepting what we can never truly understand, and allowing ourselves to love, wholly and unselfishly, at a time of enormous loss—however that loss occurs. It is about getting our hands dirty and our hearts broken. Dying well begins long before death is imminent, before the brain damage is severe, or the coma irreversible, or the treatment futile, and it requires that we do much more than make decisions about medical treatment.

So, how should we define a “good death”? What should we aim for? We can’t draft a detailed description, but we can list a few basic components that, when taken together, make a death “good.” Not surprisingly, these factors are not all that different from what makes up a good life: knowledge, respect, love, safety, and comfort.

In a good death, the patient and family are fully informed and their decisions are respected. They know what services exist in their community, their rights within the medical system, and the various options available to them. Throughout an illness, they understand the prognosis, they are aware of all the treatment choices available, and they know the goals, benefits, and drawbacks of each. They also understand that any and all treatments can be rejected, that pain and symptoms can be managed, and that people can die at home. If the patient cannot make decisions for himself, his family should have a clear understanding of his wishes, priorities, and fears so that they can, with some sense of unity, make decisions on his behalf.

Once the patient or any surrogate makes a decision about medical care, that decision should be respected by other family and friends, as well as by any health professionals involved in the patient’s care.

In a good death, pain relief and symptom management are not considered an alternative to invasive medical treatment, but an integral and essential part of a continuum of care. A patient’s comfort should be monitored with as much precision and interest as her heart rate and oxygen levels, and any complaints should be addressed immediately and aggressively. (Palliative care experts are trying to get hospitals to include pain as a fifth vital sign, so that it would be monitored regularly along with temperature, blood pressure, pulse, and respiratory rate.) Once comfort is the goal of the treatment, pain should be treated aggressively and medications should not, under any circumstances, be withheld, limited, or delayed.

Emotional and spiritual pain, which are often overlooked, should receive serious attention. Physical pain is so intertwined with psychological pain that one cannot be properly treated without the other. This doesn’t mean sending in the obligatory social worker or member of the clergy for a quick visit. Fear, loneliness, and existential angst require a far more lasting, intimate, and human touch.

People who face death should have a place where they can speak openly. They should be allowed to express their love, forgiveness, grief, regrets, and fears, but they should also be given room to express their anger and frustrations. They should be reassured that their lives have been, and still are, worthwhile, that they will not be forgotten, and that their loved ones will be okay when they are gone. They should be given the opportunity to review their religious beliefs and talk at length about spiritual issues, which often become vitally important when death looms.

On a more simplistic level, a person who is anxious or afraid may simply need to be held or spoken to gently so that he or she can get through a medical crisis or procedure. We are so quick to respond to pain with medications that we sometimes forget that human compassion and touch are also potent elixirs. A person who is panicked because she cannot take a full breath of air may be helped by a ventilator or tranquilizer, but she might also be calmed by knowing that her daughter is on the way, or because someone speaks softly to her and strokes her hand gently. These approaches won’t solve a medical emergency, but they can help. As Dr. Margaret Drickamer, a geriatrician, tells her medical trainees: “Don’t just do something; be there.

“In any crisis situation, the first thing you do is sit down,” she says. “Take the patient’s hand, and if he is short of breath, start stroking his arm at the rate he is breathing and then start slowing down your stroking. It’s like the old joke, the first thing you do at a cardiac arrest is take your own pulse.

“Anybody who has felt as though he can’t breathe—if you have ever been underwater too long or something like that—knows that that feeling is just horrendous,” she says. “People will say, ‘Intubate me,’ but what they’re really saying is, ‘For God’s sake, do something. I’m totally panicked.’ Unfortunately, ‘Do something’ to most people means shoving a tube down a person’s throat. My approach is that you immediately sit down at the bedside and take the patient’s hand. You don’t run around and panic, because the patient is already panicked enough. I give the patient Ativan, which is a cousin of Valium, and morphine, and I sit down and say, ‘You’re going to feel better. I’m giving you the medication now.’ I’ll talk slowly, and often before the medication has even taken effect, the patient is calm again and able to cope.”

Whenever feasible, death should occur in a place where the patient is most comfortable and has the most control over his own life. In most cases, that means dying at home simply because it is hard to find comfort or control, much less intimacy, in a hospital. Tubes and machines stand in the way, nurses and orderlies walk in without so much as an “excuse me,” and roommates prevent any possibility of privacy. Furthermore, once in the system, patients tend to find themselves on a track of aggressive treatment that is difficult to escape.

The patient and family should be aware that death could come at any time and act accordingly. No matter where a person is—home, hospital, nursing home—and even if the patient is still pursuing invasive treatment, he and his loved ones should not postpone anything that they want to do or say. If possible, old angers and hurts should be healed or at least put to rest. Whatever love exists should be offered as freely and fully as possible, allowing the person to die in peace and loved ones to grieve without tremendous emotional obstacles in the way.

Beyond these basic ingredients, there is no recipe, no formula for a good death, because one of the most important aspects of a good death is that it is not pinned to anyone else’s vision. A good death is not designed by a daughter, a doctor, a friend, a social worker, or a writer; instead, it should suit the unique needs of the person who is ill.

In other words, a good death is one that has been claimed. It is a death in which the doctor or some other health care provider guides the patient and family through the process, without leading them down a particular path. It is a death in which the patient understands the choices before him and can, either directly or through a proxy, choose his own route. It is a death in which the patient’s own needs, whatever they may be, are respected.

This is tricky, because loved ones can’t help but be a little selfish at a time like this. They don’t mean to be. In fact, they want to help the patient more than anything in the world. But they also have their own dire needs and fragile emotions. Someone they love is dying. They have to find a way to cope with this and to find an ending that they can then live with. And so, unwittingly, they pursue the death that suits their own egos, visions, needs, and guilt-ridden consciences. They want to help the patient, but they are using their own personal road map for how death should occur.

For example, daughter Carol may want to stop Mom’s therapy and get her home so that Mom can die peacefully and she, Carol, can tend to her every need. Daughter Ann is terrified by the thought of bringing Mom home and thinks that she should stay in the hospital, where she will receive whatever treatment is necessary. Son Fred is overwhelmed by guilt because he hasn’t called Mom since their dispute two years ago (he didn’t even send her a birthday card this year) and he is not ready to let his mother die. He has loads of unfinished business. “What the hell is going on here?” he yells. “Mom would never give up like that. We need to get her over to the specialists at The Major Medical Center.” Well, maybe Mom wants more treatment and maybe she doesn’t, but no one knows, because they haven’t bothered to think about her views and any previously stated wishes. Everyone else is making declarations for her—declarations based on their own needs, not hers.

“Everybody becomes enormously selfish,” says Dr. Sherwin Nuland, who has spoken extensively on death since his book How We Die was published. “They don’t know they’re selfish. They all think they’re doing what’s best for the dying person. But what each member of a family does and what the doctor does is always try to figure out what seems the best from his own point of view.”

Family members, loved ones, and the doctor all aim for a death that will give them serenity when they look back on it in the years to come, he explains. “You live your life with a person, you grow up with that person, it’s 25, 35, 45 years, and when that person dies, somehow you see their entire lives through the prism, through the lens, of those last months, those last weeks. You can’t get that out of your mind. Somehow you know that, and so you want that to be as easy as possible.”

Of course it is important that the needs of family members and other loved ones are considered. But what’s interesting is that when families look at the medical decisions and care from the perspective of the patient, when they ask themselves “What would he want me to do?” rather than “What do I think should be done?”, they are apt to be relatively satisfied with the results. They know that they have done the best that they could do.

a note on dignity

Any discussion of a good death cannot come to a close without some mention of dignity, for this is the clarion call, “death with dignity.” My own feeling is that the expression has been so overused and its meaning so contorted that we should scrap it. For some people, death with dignity means a “natural” death without invasive medical intervention or machinery. Some say dignity is about remaining lucid or maintaining control over the situation. Others seem to suggest that dignity is reflected by one’s outward appearance and bodily function—having your rear end exposed is by definition undignified. Recently the expression has also been used in reference to physician-assisted suicide.

Such views of dignity only return us to those erroneous visions of death as something that should be clean and fluffy and beautiful. The truth is, death is messy. People drool and need their bottoms wiped; they smell and they make unpleasant noises. From a purely physical point of view, they are rarely what one would call dignified. As for the machines, they, by themselves, don’t strip a person of dignity. And as for gaining personal control, which has become so critically important in recent years, people retain control in that their wishes are respected and, if at all possible, carried out; beyond that, death is, by its very nature, about letting go of control. When they are dying, people are usually too sick, debilitated, confused, or exhausted to make decisions for themselves; they must relinquish control and trust those around them to pilot their final days for them.

Because we’ve created this expectation that death should be dignified, without examining what that means, survivors are often left feeling guilty, wondering what they did wrong because their loved one didn’t seem particularly dignified at the end. Now people even talk about committing suicide because they are so afraid of losing what they perceive to be their dignity. Is this what we’ve come to? Creating “dignity” for ourselves by administering a lethal dose?

The truth is, dignity has little to do with autonomy or respirators or fecal continence. Dignity is a character trait, like courage or kindness or intelligence. It is something we have within ourselves, not something that is reflected in our physical appearance; nor is it something to which we have a right. It is not something we can demand for ourselves, create for others, or achieve through suicide. And it is not something that we lose simply because we are dying.

Morrie Schwartz, a sociology professor at Brandeis University, is the subject of the best-selling book Tuesdays with Morrie, and was interviewed for Nightline because he was so philosophical about his dying and was willing to talk openly about his pain, his reflections on life, and the lessons he was learning in death. In the Nightline interview he talked about his mourning and bitterness and bouts of uncontrolled crying. He talked about reviewing his life, letting go of regrets, and repairing broken relationships. He talked about God and his new awareness of “a glowing sense of the connectedness of all of us.” He urged others to talk openly about illness without shame, to be compassionate, and to live fully.

Morrie had amyotrophic lateral sclerosis, also known as motor neuron disease or Lou Gehrig’s disease. In ALS, the nerves that control muscular activity degenerate, leaving the muscles to atrophy until the person cannot walk or lift a finger. Eventually the muscles that control breathing and swallowing are paralyzed and the person suffocates or chokes to death.

ALS is a horrible, debilitating disease that steals the body, leaving the mind to function within an increasingly useless and burdensome shell. Toward the end of his life, Morrie couldn’t feed himself, wipe his bottom, or push his glasses up on his nose when they slipped down. Nevertheless, he had a good death because he got clear answers to all of his questions, considered his choices thoughtfully, and made decisions which were honored. He had a good death because his care was what I would call aggressively holistic; although little could be done about the disease itself, enormous work was put into alleviating his discomfort, making the most of whatever abilities he still had, and providing him with emotional and spiritual support. He had a good death because the people around him respected him and loved him and treated him as a complete and living person, despite the increasingly wretched shape of his body.

Morrie Schwartz also died with dignity, enormous dignity, not because someone gave it to him, but simply because that was part of who he was. He refused to deny his dying or to hide his illness; he refused to be ashamed of his decline or to take blame for it. When asked if losing control of his body was embarrassing, Morrie said, “I have no shame because that’s a cultural phenomenon that we’ve built into us. My dignity comes from my inner self.” He hit that nail squarely on the head.

Morrie died with dignity because while his body deteriorated, his soul, his self-respect, and his respect for others remained intact. He developed dignity throughout his life and he maintained it in death. While his emotional openness and deep spirituality may not be for everyone, his willingness to navigate death with courage and honesty is something we can all strive for, and his dignity is something we can all learn from—in death, as well as in life.