- Shopping Bag ( 0 items )
A physical, psychological, and spiritual transition that can bring with it the potential for great personal growth and family closeness, dying requires special care and understanding. Peaceful Dying, based on the FairCare program founded by Dr. Dan Tobin, presents a 26-step program designed to return control and peace to those who have entered this stage of life and to help all involved—the dying, their families, and health-care providers alike—appreciate the challenges dying presents. From addressing such formal...
A physical, psychological, and spiritual transition that can bring with it the potential for great personal growth and family closeness, dying requires special care and understanding. Peaceful Dying, based on the FairCare program founded by Dr. Dan Tobin, presents a 26-step program designed to return control and peace to those who have entered this stage of life and to help all involved—the dying, their families, and health-care providers alike—appreciate the challenges dying presents. From addressing such formal concerns as creating a living will and pain relief to finding forgiveness, love, and peace of mind, this compassionate and empowering guide will ease our natural anxieties about the end of life, turning this fearful prospect into a fulfilling legacy.
Dying as a Natural Part of Living
My Journey to This Work
A s a third-year medical student in 1982, I was assigned to a medical team caring for a tall, frail, eighty-eight-year-old man who was dying of multiple diseases, all very advanced. When I walked into his room, Mr. Arnold was curled on his bed in the fetal position, staring blankly toward the ceiling. It was clear that he did not have much longer to live.
"Mr. Arnold," I said gently, "I'm Doctor Dan Tobin. I have to ask you a few things."
Politely but apathetically, he struggled to answer my questions. "I'm going to draw some blood now," I told him after I'd finished with my forms. "We have to do a few tests on you." His chart indicated that several specialists, including those for heart, kidneys, and gastrointestinal tract, were scheduled to perform tests on him. At first he seemed confused; then he looked at me and said, very clearly, "Please, no more tests on me. Please, I beg of you, everything has been tested. All I want to do is go home. Please send me home."
Trying to sound confident, but in fact unsure of what was right, I replied, "But we have to take these tests in order to help you."
"Please," he repeated. "Please, no more tests." His eyes were sunken, red rimmed, sad, and full of fear. His fear was not of death, but of me and what I was about to do him. He wanted to go back to Parry Rest Nursing Home, where he lived, to die in peace. It was a simple request made by onehuman being to another. But he knew that I would refuse this request and that I would participate, along with all the other doctors, in making his final days a nightmare wracked with pain.
For six days, doctors performed various tests. The gastroenterologist passed tubes up and down both ends to search for tumors. The respiratory specialists were taking blood gases—an extremely painful blood test in which the blood is taken from the arteries in the wrist. The primary care doctors ordered daily blood tests to determine medication changes. Finally, Mr. Arnold's heart gave out. A full-scale code blue, the all-out effort to resuscitate a patient, was initiated. I stood in the corner of his hospital room and watched the senior staff pump stimulants into his veins, then place a large intravenous catheter into his neck. An eager and strong young doctor ripped open Mr. Arnold's hospital gown, placed his hands on the old man's chest, and began vigorously pumping his entire upper body. I listened as his ribs cracked under the hands of the muscular young resident. Then came the machines. First a breathing mask with a hand pump forced air into Mr. Arnold's lungs. Then a clunky breathing machine called a ventilator was rushed into the room, and someone threaded a breathing tube into his mouth and down his windpipe. His chest heaved as the machine pumped oxygen into his lifeless lungs. Electrical paddles were placed on his chest. I watched his body jump off the bed with each application of the electrical paddles.
I stood in that corner trying to contain an explosion of conflicting emotions—sadness, anger, and confusion. I could not reconcile the remarkable contradiction between what the doctors, nurses, and technicians were doing and what this man wanted. Were these people doing all this because they thought it was right? Was it right? I wanted to know. I worried about what we would do next if the old man survived this episode. What condition would he be in? Would we do yet more painful, useless tests on him? None of us could possibly have any illusions that we could make him well again. Whatever we did, he would soon die. All our machines and all our tests could do nothing but make him suffer in the little time he had remaining.
The team tried to revive Mr. Arnold for ten minutes, but his body did not respond. Reams of electrocardiograph paper splattered with the old man's blood covered the floor, every inch of it testimony to the obvious: he was dead. Finally, the senior physician called off the code blue. Respiratory therapists, five doctors, three nurses, and three medical students all looked down at the floor, dejected. They had failed in the one thing their training had told them mattered—they had not prevented death. I too felt that we had failed Mr. Arnold, but in a very different way. As the doctors and therapists filed out of the room and the nurses started to clean up the body and disconnect the machines and fluid lines, I found a note on the floor, written by this old man.
Everything has been tested I was told I was finished lung tested I hope to go Parry Rest to day.
Please let me go to day
No more tests on me for anything
I knew that dying didn't have to be that way. It did not have to be an impersonal event mediated by cold technology. I had seen the importance of peaceful dying at a very early age. When I was eight, I'd spent a lot of time in my uncle's home, where my ailing great-grandfather lived. I knew he was dying, but it didn't scare me. Everyone treated it as natural. I was deeply impressed by the local family doctor, who routinely made house calls and who tended to my great-grandfather's dying. He was a tall, slender man, elegant and very distinguished. An Italian immigrant, Dr. Minetta brought the old country ways with him, making house calls regularly.
The doctor's visits were a major event in the family. Everything quieted down; a sense of awe permeated the house as he examined my great-grandfather. There was a feeling of tranquillity on these occasions. We'd look at each other and think, "It's all right, Dr. Minetta is here." It wasn't false hope that he gave us. He never suggested that Great-Grandpa was not going to die; he simply made death seem less terrible. He was gentle with the dying man; he listened to him; he gave him medications to dull the pain. He never asked that the other children and I be sent away. We were part of the family, part of Great-Grandpa, and it was right that we should be part of his dying. I felt a kind of hero worship for Dr. Minetta and decided that I too would one day be a doctor. Partly it was because of all the attention he got. Someday, I thought, everyone would become quiet when I walked into a room. They would all stare at me with awe and wring my hand with gratitude. It was a grand fantasy for an eight-year-old. But equally, and ultimately more importantly, I wanted to help people the way he did. His compassion struck me deeply—so deeply that it remains etched in my mind to this day.
Yet when I went to medical school, I discovered that we weren't trained to face dying as calmly as Dr. Minetta did. People with advanced illness were dying without guidance. There was no organized system of caring for them. Nowhere in all my training was there formal instruction in caring for the dying, in the nature of dying, or in how a patient's dying affected the health care practitioner. I was shocked by how many people were left to die alone, suffering physical and emotional pain. Large teams of academic physicians and physicians in training, along with nurses and other health care practitioners, concentrated on curing disease, rarely making sure the patient understood all the available treatment options.
I saw the fears patients had about their illness and the discomfort of the practitioners in the face of those fears. The doctors seemed to be fighting the dying process to the bitter end. Patients would request that everything be done to keep them alive, without being told that nothing could be done to keep them alive for more than a few days or weeks and that many of the life-prolonging techniques would be hideously uncomfortable. Families too would beg the doctors to do anything possible to keep their loved ones from dying. I found it hard to watch people request all the advanced technological medicine. I recall vividly the fear and pain in the eyes of many patients who were holding onto every moment and not receiving assistance with the emotional aspects of their dying. Many of the people I began my clinical and medical experience with were dying in pain and terror.
Most of the doctors I worked with appeared unable to accept dying as a natural progression of living. To the physicians and the staff, death was seen as a defeat, and a patient's dying was often referred to as a personal failure. The doctors seemed overburdened, worried about their patient load and the possibility of malpractice suits. Most of them appeared uncomfortable talking with patients—or even with medical colleagues—about dying. Further, they usually hadn't developed the interpersonal skills required to fully relate to dying people. Only a few of the physicians were able to talk comfortably about their dying patients and indeed about themselves—the emotional difficulties involved in becoming and being a physician. None of their training had addressed how those feelings would affect their approach to dying patients.
There were exceptions. I recall several great doctors who were comfortable in caring for the dying and who took the time to explain the importance of learning these skills to their students. These few men and women were humble, worldly, and quite skilled as clinicians. They taught me that the medical system greatly affects people's lives, and especially their dying. These doctors knew how to listen to their patients: they routinely sat at patients' bedsides, expressing concern for their needs. They went out of their way to be available to the families and loved ones of their patients. They were acutely aware of the suffering, both emotional and spiritual, that their dying patients went through, and they were always attentive to such suffering. They never forgot a dying patient's humanity.
In the early years of my medical practice, I strove for a way to reconcile the contradiction I kept seeing between the physicians' passion to relieve pain and the pain we routinely inflicted on our dying patients. As I searched for my own place within medicine, I was lucky enough to have a broad medical experience. I worked for a while in a remote, rural part of the country, then at large and prestigious university teaching hospitals. I spent two and a half years providing medical services in the predominantly poor, African American neighborhood of Harlem in New York City. Very early on I was struck by one common theme among the patients I worked with: however different they were in other ways, all had similar experiences and needs at the time of death. The wealthiest and the poorest, the Ph.D's and the barely educated all experienced death in very similar ways. As I progressed in my career, I worked in a number of different disciplines, not all of them medical. At different times I worked as a waiter, career counselor, creative manager in the music business, developer of children's cartoon characters, director of a foundation addressing childhood hunger in the United States, general physician, eye surgeon, and hospice palliative-care physician. I worked with and got to know many different types of people with many different cultural backgrounds and beliefs. As I worked in these various professions, I was always pulled by the experiences I had had with dying people, and the sense of how each individual's struggle formed the essence of the human condition. Eventually the power of these experiences and my desire to help people in the last stage of life led me into hospice palliative-care medicine, where I began working in 1995. As a medical student and an intern, I had been powerless to prevent the suffering inflicted on the dying. I knew, finally, that my focus in medicine must be to help reverse the attitudes that had created so much needless suffering and deprived so many people of good and peaceful deaths.
I have been working with the dying ever since. Initially, I simply wanted to offer physical and emotional comfort, to provide pain relief, and to answer medical questions that might come up. But gradually I found my role expanding as I learned more and more about what people needed at this stage of life and what they were capable of experiencing. Eventually I realized that, like all other stages of life—infancy, puberty, adolescence, adulthood, and old age—dying offered unique opportunities for growth, understanding, and spiritual awakening. I began to integrate this realization into my work.
The History of Medicine in Relation to the Dying Process
To understand our current medical system and its potential for helping people, as well as the current practice toward the dying person, we need to look briefly at some basic history of medicine. Throughout documented history there has always been some form of medical practice, which, until the last fifty years, involved a healing art with limited technical resources. All Eastern and Western practices of medicine were originally based on a concept of preventing illness, helping the person's body heal by responding to disease, and administering to the suffering of people with a great sense of care. Prompting the body to heal itself when possible, as well as creating a quiet mental state, were valued ideals.
A spiritual component to understanding the relationship between illness and healing has existed throughout the history of medicine. Spirituality, for our purposes, is defined as a person's individual understanding of, and relationship to, a higher power, a vital source of energy, and eternity. Spirituality often leads to an appreciation of some form of celebration as a regular part of living. Integration of what is now called mind-body medicine, the understanding that emotions can affect disease as well as healing and wellness, is seen throughout the evolution of medical philosophy. Historically, great emphasis was placed on caring for the emotional needs of the dying person and understanding that dying well meant dying in good spirits whenever possible.
During the mid-1600s, in the age of enlightenment, science began to distance itself from a holistic approach to disease. In the mid-1800s, the germ theory, the theory that microbes caused disease, was developed. The opposing view at that time was that the body's system weakened, allowing microbes to grow in what would be called an opportunistic state. With the advancement of antibiotics in the 1930s, medicine could prevent the spread of infectious diseases. It also began to make great strides in curing diseases. Soon thereafter came the development of vaccines. Families began bringing their dying to hospitals. Dying became institutional, changing our relationship to it dramatically.
As technology advanced, medical instrumentation, X rays, and an abundance of diagnostic and therapeutic treatments allowed for rapid advances in medicine and surgery. Many lifesaving instruments and techniques were routinely employed in medical practice, and the acute medical model for treating and curing disease became a part of mainstream health care. Modern medicine quickly achieved excellence in managing medical emergencies, including trauma, heart attacks, infections, and many other conditions. However, the marriage of technology and medicine has resulted in significant problems in the areas of caring for the dying person.
Perhaps the greatest limitation of Western medicine has been its refusal to acknowledge the inevitability and naturalness of death, and how important a part of life it is. The passion to prolong life and to enhance it is wonderful, to a point. It is probably responsible for most of the great advances of modern medicine. But when it doesn't take into account the simple fact that at some point life can't, and shouldn't, be prolonged, it creates, rather than alleviates, suffering. If we in medicine cannot accept dying as a natural part of living and embrace the dying process, we neglect people when they are most vulnerable, most alone, and most desperately in need of love, comfort, and a very specific kind of care. With the best of intentions, we sometimes inflict on our patients treatments that are extremely painful, and we neglect their real needs.
Over the last fifty years, U.S. medicine has blossomed into a giant business, currently surpassing a trillion-dollar-per-year cost. Many significant trends, including the creation of fee-for-service delivery of health care, have caused the system to change dramatically. As this system becomes transformed into a new managed-care model (expanded from employers providing health care for their employees), people find themselves at the bottom of an inverted pyramid trying to figure out how to secure good-quality health care. As a result of many different pressures within the health care delivery system, the doctor-patient relationship is becoming seriously challenged, exacerbating the difficulties in end-of-life care. The doctor-patient relationship is historically based on intimacy, trust, and the belief that the best medical decisions regarding treatment will be made. To rebuild the relationship, the public must be able to see a change in the way in which doctors manage end-of-life situations on an individual basis.
Fortunately, our society is beginning to realize that there is a natural time to die, that at some point the body and mind are ready to stop fighting. Yet although there has been an increased awareness of the dying process and of the need for peaceful dying, studies show that few hospitals create conditions for peaceful dying and that living wills are too often ignored. Too many people have died isolated, fearful, and in physical and emotional pain. Too many families have endured lonely, frightening days and nights watching their loved ones dying. With some guidance, much of this suffering can be alleviated. As a result, today there is a great public outcry for a system of medical care that can help people make choices in dying and have those choices honored.
We need a formula that can help people know what to talk about throughout the process of dying and how to get the right professional help with these issues. We need a comprehensive system to help dying people, their families, friends, and medical providers communicate about the dying process. Most of all, we need to recognize that peaceful dying can be defined by specific criteria and that it is something most of us would want for ourselves and for those we love if given the chance. To achieve peaceful dying, it's important to learn how to talk about dying and how to empower oneself to fight for it.
It's useful here to look at how the women's health movement has fought for, and sometimes won, changes in Western culture's approach to birthing. For many decades, doctors dictated the specifics of obstetrical care and women were instructed to give birth in a specific manner. Women were ordered to stay in bed, usually anesthetized, and kept from participating in the birth of their children. Although that is still sometimes the case, it's no longer the norm. Today women often deliver children in positions they request, in handsomely decorated delivery suites, surrounded by loving family and friends. Fathers who used to wait outside the room during the birth of a child are now welcome participants in the process. Sometimes close friends or relatives also assist in the birthing process. The number of women who give birth at home has increased, and many are turning to the original health professional for childbirth, the midwife. Once the initial shift in consciousness developed, economic forces pushed great changes in the business of obstetrical care as women began demanding these new (or, rather, old) approaches.
We can learn a lot from this. Just as the women's health movement has succeeded, to a degree, in changing the way we treat childbirth, restoring it to a more natural approach, so we can all participate in shifting the way the current medical system treats dying. The demand for compassionate, natural caring needs to be implemented as the standard of care in medicine when people decide they are ready to die.
Dying: The Benevolent Teacher
As I began working with different people in their end-of-life situations, I found that the process of dying was a powerful instructor. I saw that dying was an intense and unique period of life, a transition of unparalleled magnitude. A great deal of growth and understanding developed for people as they approached their dying. I discovered that, in most cases, the search for meaning in life was intensified by the dying process. Everyone who faced dying at some point began asking such questions as, "What is really the meaning of my life?" "What have I done with my life?" and "What does our life mean anyway?" It was at this time that I made an amazing discovery—the wealth of personal introspection and healing that could be learned from examining the dying process.
The reality of death is a living truth that takes root within us early on. As soon as we become aware of change, we become aware of death. Children learn about dying when their pets die. As we age, we see the deaths of grandparents, then of parents. As our own bodies pass from young adulthood into middle age, and further into old age, we see the signs of our own mortality. Though each of us deals with the reality of death differently, the fact that we will die serves as a living teacher, shaping our lives and the way we treat ourselves and others, for good or ill. When people are dying they reflect on their lives, and in their private moments they think about their lot in life. Dying invariably creates a wider awareness of life. This doesn't mean that everyone becomes kinder or more sensitive: much depends on the type of person involved. In some cases, fearing death itself, people become more selfish, lashing out at the world that seems to be abandoning them.
In my experience, though, this situation is rare. Lying in bed, with time to think, most people do soften, and spend time reviewing their lives. For those who are able to contemplate and accept death, there often comes an increased recognition of how essential love, honesty, and forgiveness are for being at peace with oneself. In some cases, the awareness of death makes people more focused and determined; in others, it mellows them and makes them more tolerant.
One of my patients was a middle-aged woman who had led a busy life, raising five children and living the life of a socialite. She had never been particularly introspective. Now she had metastatic ovarian cancer and had to lie, inactive, in a hospital bed. We spent many hours talking about her life. She felt that she had lost a lot by not being more reflective. Over time, she began to realize that much of her bustling activity had served as a means of avoiding personal reflection. Always in motion, she had rarely caught a glimpse of her deepest feelings. Now, forced to stay in bed, she was also forced to reflect. She realized that she had failed to listen when her children had tried to communicate that they needed more emotional attention than she offered. She spoke of this regretfully, but felt she had reached in her dying a depth and reality in herself that her busy life had never afforded her. She began the process of making peace with her children. I did very little active counseling with this woman; all I provided was the space in which she could do the reflecting she so desperately needed to bring her life to a peaceful close.
Another patient of mine had been abusive to his wife and children. He was a tough, elderly man, tattooed from head to toe. Now he was dying of prostate cancer. Our hospice's social worker contacted his children, telling them their father was dying and this was their chance to say good-bye. They refused to come. At first he was angry, but as we talked he began to evaluate his life. He realized that he had been wrong, and spoke often to me of his longing to be forgiven. He began to read poetry, something he would previously not have allowed himself to do: he found in the words of the poets an expression of his own longing to be understood.
Searching for Meaning
All the people I have worked with through their dying have reflected on the meaning of their lives in their own individual manners. I usually encourage people to ask questions about their lives. Most are able to ask and answer questions about life's meaning when they've done this. Asking yourself questions allows you to confront your fear of dying and of what does or doesn't come after it: the fear of nonexistence lies at the core of the denial of death. Simply thinking about your dying for a few moments and reflecting on your impermanence, which is one of life's certainties, can help lessen the fear. Often people come to believe that there is life beyond this life or that there is a kind of immortality in the work and love they have left behind. Looking at your dying can be one of the greatest catalysts for growth. Dying can be welcomed and viewed as a great friend. Throughout life, contemplating death can nurture the values that support life.
During the dying process, the spiritual truths that underlie life can emerge with irrefutable clarity. It's as if the lessons we were learning the slow way throughout life suddenly become distilled and intensified when we start to die. Once people enter the dying process, they often see the necessity of love, forgiveness, letting go of resentments, and making peace with those who accompanied them through life. Dying people who embrace these values achieve a kind of serenity that has often eluded them during their lives. Unfortunately not everyone does embrace these values. Some hold onto bitterness, as power driven in dying as they were in living. Though they see the chance for change, they reject it, often showing extreme spite toward the people around them. In so doing, they also lose the serenity that they might have discovered in their last days.
What I have found with many of my patients is that from the dying process can emerge a kind of generic spirituality, consisting of universal truths that are common in all religions. This doesn't occur only with those who have been involved in specific religions; sometimes the least religious people are the most spiritual.
Death isn't just a benevolent teacher to the dying. The living too, if they allow themselves to be part of a loved one's dying, learn valuable lessons—lessons that can enrich their lives and in turn offer strength to their own dying when it comes. It's not always easy to see this at the time, when grief and loss are all-consuming. It usually takes time and the diminishing of the pain to see what growth has occurred as a result of the participation in a loved one's dying.
It can be especially difficult when the dying person is a child, yet I've seen even that tragedy teach valuable lessons to the survivors. A dying child can give incredible gifts to a family and loved ones. I learned this early in my medical training, with a nine-year-old girl named Jamie. She was on a hospital ward, dying of leukemia. When I first introduced myself to her, Jamie sensed how uncomfortable I was. She immediately tried to reassure me. "Doctor Dan" she said, "I'm okay with all that's going on. I've been in and out of the hospital for the past three years, and I know I'm going to die and go to heaven." Amazed by her calmness and her maturity, I spent as much time as I could with her and her family. I began to see that Jamie's role in the family was that of caretaker: she was teaching them, with her own ease, that dying wasn't so terrible. "I'm okay," she'd constantly reassure them. "It's all really okay."
Jamie's mother had great difficulty accepting the final days of the girl's dying. "Remember me," Jamie would ask her, and all the rest of us who clustered around her. "Remember the good times we had; remember me with love." Her mother tried as well as she could, but it was her father who really took in the lesson. At first tight-lipped, he said to me, "If she accepts her dying, I guess I have to." But he soon grew beyond that, coming not only to acceptance but to genuine peace. During her last few weeks, Jamie gave away all her favorite objects—to her parents, her sisters, the staff members she had grown close to. She taught everyone that her dying could not be negotiated away and that she was at peace. "Just remember me," she asked us. It's been many years, but certainly I still remember Jamie, and I am certain everyone else involved in her dying does too.
Treating the Living and Caring for the Dying
Many people argue that we should fight death completely, even at the very end of life, because only by making such a determined struggle can we ever hope to keep the living alive. From this perspective, refusing any possible life-prolonging treatment is a form of suicide; for a doctor to stop treating a person's disease, no matter how advanced it may be, is a form of murder.
But this is a sad distortion of what medicine is about. Certainly, prolonging life is important—when there really is life to prolong. Unless you are killed by an accident, a sudden heart attack, or a stroke, chances are very good that you will develop some life-threatening illness—cancer or a disorder of the lungs, heart, kidneys, or liver. Such diseases are very often treatable and sometimes even curable, particularly if they are detected in their early stages. At this point, it makes sense for you to do everything you can to stay alive and for your doctors to do all they can to save you.
But sometimes these diseases do not get cured, no matter when they are detected. The illness progresses until all treatment options have been exhausted, and you've reached the turning point when the disease process has become the dying process. Your eventual death will not be your doctor's failure or your own, but a natural end to physical existence.
One of the things I've seen over and over as I've worked with dying patients is that there almost always comes a point, well before a person dies, when the doctor or the patient—or both—realizes that the illness has progressed beyond any medical hope of recovery. Most people who have been stricken with a life-threatening illness know they are going to die, even when their doctors have kept such information from them.
One of my patients, a fifty-three-year-old man who contracted liver cancer and went through several rounds of chemotherapy, told me how he had come to understand that he would die soon. "I looked up toward the heavens and simply asked, `Why?'" he said. "The next thing I heard were the words, `Because it's your time.' I knew from that moment on that I was going to die. I had never spoken to God before, and he had never spoken to me, but I knew that was him talking to me then. After that, I stopped the treatment. It was just a matter of getting ready."
This man had realized in his own way what his oncologist could have told him: that further treatment would have been pointless because liver cancer, especially in its advanced stages, is usually incurable. He died twenty-two days later.
Another of my patients, a fifty-nine-year-old laborer, had cancer of the mouth and throat. His tumor grew into a mass the size of a softball on the right side of his jaw. Eventually, we knew, it would block blood flow to his brain and bring on a fatal stroke. Surgery was impossible, and after several rounds of chemotherapy and radiation, none of which slowed the tumor's growth, the man decided to stop all treatment. His medical team had told him that he had between four and six months to live, and he decided he didn't want to make that period any more painful than it already was. All he wished to do at that point was to be with his family and prepare for his death.
A self-educated man, he had read a great deal about various religions. One day while the two of us were sitting together, he started to talk about what he was facing. "I'm going to go on living," he said to me. "But I will live on as energy in heaven. Right now, I'm paying for some of my mistakes."
"What do you mean?" I asked.
"Some people believe there's a purgatory in the afterlife. I don't believe that," he said. "But I do believe that dying is a kind of purgatory. It's a way of letting go of stuff you don't need, and getting ready for the next stage of life."
For both these men, further treatment would have been not only futile, but inhumane. It would not have changed the outcome of the disease but certainly would have altered the quality of what remained of their lives.
Such is the case with the vast majority of people whose physical lives are ended by disease. Once the turning point has been reached, further treatment of the disease not only contributes to physical and emotional suffering, but often prevents people from making peace with their lives and preparing for what lies ahead.
Mainstream medicine can learn much from the early work in the field of thanatology and the groundbreaking efforts of the worldwide hospice movement—Cecily Saunders in the United Kingdom, Elisabeth Kubler-Ross in the United States, and all the people who have paved the way for hospice care to be integrated into our health system. The hospice philosophy embraces meticulous attention to pain control, as well as the importance of addressing the patient's psychological and spiritual needs in dying. Hospices developed the understanding that it may be desirable to stop attempts to cure disease when death is approaching and inevitable. It thus pioneered the concept of death with dignity and humane pain management. It is time to move to a next stage, in which palliative care is incorporated throughout the fabric of mainstream medicine.
When I was a senior medical student, I met Dr. N. Michael Murphy, a general physician and psychiatrist who had recently begun a hospice in Albany, New York, where I was training. This was pioneering work, as there were few hospices in the United States at that time. Dr. Murphy brought the tradition and art of caring for the dying into medical practice while facing a significant amount of resistance from the medical establishment. Few doctors would refer their patients to his hospice, which they saw as unnecessary and interfering with the hospitals' work. Dr. Murphy's hospice team began practicing and teaching a type of medicine based on a person's right to die in peace. Fortunately, the increasing public demand for processes that allowed death with dignity forced the medical establishment to become less resistant to hospices, and the hospice movement has seen a significant growth over the past several years.
In his work Dr. Ira Byock, a hospice pioneer, has emphasized the importance of improving and measuring the quality of life in dying.
What we need now is to take what the hospice movement has done and expand it, so that people can die in hospitals, homes, and hospices with the same level of comfort and care. We also need to do more to help people with advanced disease, and their health care workers, understand the psychological issues of facing dying at a much earlier stage, and in greater depth, than the traditional hospice program has achieved. When we provide this level of quality standardized care, we will have paved the way for peaceful dying to be within everyone's reach.
|Part One A Look at the Dying Process|
|1. Dying as a Natural Part of Living||3|
|2. The Human Response to Dying||22|
|Part Two The Steps of FairCare: Positive Living, Peaceful Dying|
|3. Individuality of Disease, Individuality of Choice||37|
|4. Taking Control of Your Life||45|
|Step B: Confronting, Expressing, and Diminishing Fear of Dying|
|Step C: Slowing Down Time and the Mind|
|Step D: Creating Positive Days|
|5. Coming to Terms||71|
|Step E: Talking to Your Doctor—The Early Stages|
|Step F: Talking to Your Family|
|Step G: Coming to Terms with This Reality|
|Step H: Seeking Counseling and Support|
|6. Practical Matters||87|
|Step I: Selecting Advance Directives|
|Step J: Considering Other Practical Concerns|
|7. Your Spiritual Destiny||102|
|Step K: Examining Spiritual Views on Living and Dying|
|8. The Turning Point||112|
|Step L: Being Ready|
|Step M: Shifting to Care|
|Step N: Ensuring Family Support|
|Step O: Talking to Your Doctor Again|
|Step P: Dealing with the Suicide Question|
|9. Preventing Pain and Isolation||126|
|Step Q: Deciding Where to Die|
|Step R:Getting Relief for Your Pain|
|Step S: Dealing with Physical Changes|
|Step T: Nurturing Your Body, Mind, and Spirit|
|Step U: Telling Your Story|
|10. Finding Peace||151|
|Step V: Embracing Love as the Meaning of Life|
|Step W: Achieving Peace of Mind|
|Step X: Helping Plan Your Funeral or Memorial Service|
|Step Y: Preparing Your Loved Ones for Their Bereavement|
|Step Z: Dying with Tranquillity|
|Appendix 2: Summary of FairCare Concepts||171|
|Appendix 3: Living Wills and Health Care Proxy Forms||178|
|Appendix 4: Additional Resources and Reading||186|