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TURNING POINTS AT LIFE’s END

“What do you mean my mother has had a pacemaker installed to keep her alive?” I asked, aghast at the news. My ninety-two-year-old mother had severe Alzheimer’s disease and for years had been imprisoned in an undignified, meaningless existence.

“She developed a dangerous arrhythmia and would not have survived without it,” her physician responded.

“But her living will expressly said she didn’t want invasive medical procedures!”

At the other end of the phone, her physician was silent. Eventually, he repeated lamely, “She would not have survived without the procedure.”

“How could you have violated her wishes?!” I strained at the incomprehensible news. My mother’s living will, written long before she lost her mental faculties, made it clear she did not want her dying senselessly prolonged. Installing a pacemaker in this defenseless, ninety-two-year-old woman was nothing short of a massive medical assault. I was astounded. The news seemed unfathomable.

As soon as I was able, I flew from Boston to where my mother had been hospitalized. Nothing could undo the medical travesty that had been visited upon her, but I felt the need to see her, to question her doctor and the nursing home staff further, to do whatever I could to safeguard her wishes for the future. While I was the only physician in the family, my two older brothers shared my indignation over her medical treatment. Our father was spared the anguish over her mistreatment, having died some fifteen years earlier.

All her life, my mother was a fiercely independent, intellectually vigorous woman used to making her own decisions. She was a large woman with a commanding presence—a career professional and mother in the 1930s and 1940s. She was a confident, handsome person whom I remember from my childhood days as being comfortably overweight. She had a wonderful sense of humor that balanced her natural tendency to assert her authority. In addition to raising three sons, she held various executive positions during a long and productive career. Ahead of her time, she was steadfast in her opinions, knew her own mind, and brooked no nonsense from anyone. She was proud of having shaken President Kennedy’s hand in the Rose Garden.

One of Mother’s more outspoken, well-known opinions was that she did not want her death prolonged if she became physically or mentally disabled and could no longer lead a meaningful, satisfying life. Many times over the years she proclaimed, “If I become senile, just take me out and shoot me.” In the 1970s, when living wills first came into use, Mother signed one, clearly indicating that she did not want her death prolonged by medical treatment if the quality of her life ever became so poor that there was no significant intellectual activity or reward. She entrusted the men in her life—my father, my two brothers, and me—with the responsibility for safeguarding this wish.

In 1985, when Mother was ninety years old, she fell getting out of bed and suffered a compression fracture of the spine. By then, she was forgetful and confused at times, a real change from all her previous years of direct and forceful action. After a month or so, it seemed clear to my brothers and me that she could no longer stay in the family home by herself. She and the three of us decided she had to be admitted to a nursing home near one of my brothers.

Following the spine fracture, Mother’s ability to participate in medical decisions declined rapidly, but she was initially involved in decision making to the extent possible; we kept her apprised of everything. We made sure that her wish not to prolong her death with aggressive medical treatments was prominently displayed in her medical record at the nursing home. Each time I went to visit her, I spoke with the head nurse, reminding her of the situation. We gave her doctor a copy of Mother’s living will and discussed it with him on several occasions. There seemed to be no chance that her life would be inappropriately extended.

After Mother had been in the nursing home for some months, it was obvious she had Alzheimer’s disease. Her memory became extremely poor, and she volunteered no opinions about anything (we knew then that she was really impaired!). Her responses to comments or questions were only a few words or less, and her usual strong appetite for books and newspapers had vanished. She simply sat in her chair and looked around the room—her commanding presence was gone. She had lost a lot of weight and had a stooped, hesitant posture. She didn’t like to leave her room in the nursing home because she “felt sorry” for all the old people lined up in the hall, sitting in their wheelchairs, looking vacant. Little did she realize that she was just like them. When I visited, Mother barely recognized me. Several years earlier, she would have been aghast to have known what would become of her. The only saving grace was that now she did not realize what had happened.

What to talk about on these visits was always a problem. Conversation was principally a monologue on my part. On one visit, I thought Mother might enjoy a game of gin rummy. For years, she had loved card games, and she and I had played hundreds of games of gin.

“Would you like to play a game of gin?” I asked.

“Yes,” she brightened up.

I dealt. Mother picked up her cards and did some arranging of them in her hand. She knew all the motions to go through— picking up, discarding, making the little noises she always made as the game went on. “Ah! . . . Ummm! . . . That’s good . . . Oh, my.” Pleased that I had thought of this form of communication, I thought the visit was going quite well. Then, Mother said with a bit of triumph that always went with displaying one’s winning hand, “I’ll go down now!” She spread out her cards on the table, but there was nothing winning about them at all. No card matched another! All the arranging of cards in her hand, the picking up and discarding, and the murmurs of satisfaction—it all meant nothing. She was truly senile. Mother, as we had known her all our lives, was gone. We “played” another couple hands and quit. I left that visit quite depressed.

The call from her doctor announcing Mother’s pacemaker came just weeks after that visit. A nursing aide had been taking Mother’s routine pulse and temperature readings, and noted her pulse was only thirty-five, about half of what it normally was. She had suddenly developed a dangerously irregular heartbeat, an arrhythmia. The treatment for an arrhythmia is surgical implantation of an artificial pacemaker beneath the skin. If this is not done, the patient will usually die quickly—within hours or a few days—due to heart failure. Symptoms include profound weakness and shortness of breath. The latter can be treated successfully with morphine, but without the pacemaker, death in the immediate future is fairly certain.

In Mother’s case, this would have been the desired end of her indignity. She could have been treated with morphine to relieve any distress, and the unwanted prolongation of her life could finally come to an end. That was exactly the sort of release from her senile imprisonment that she, my brothers, and I wished for her.

Instead, her doctor transferred my mother to the local hospital where a pacemaker was surgically implanted. We were easily reachable for discussing Mother’s options, but he had proceeded quickly—without notifying or consulting any one of her three sons.

My mother lived an additional five years in a helpless, debilitated state lacking all dignity, totally contrary to her written request. During those five years, she had no quality of life left. Mother never left her room, where she simply stared at the wall. She had no communication with her old friends. Indeed, she would not have been able to recognize them. For the last two years of her life, she needed assistance to go to the bathroom and for all her personal hygiene.

We fired her doctor and engaged the services of another physician who promised that nothing further would be done to prolong her life artificially. Ninety-two when the pacemaker was installed, Mother was ninety-seven at the time of her second and final death.

WHAT WENT WRONG

In my mother’s case, she had anticipated a turning point in life well in advance, long before Alzheimer’s disease had robbed her of her full mental capacities, and her living will was designed far ahead of time to make sure her wishes were carried out. (Now, advance directives, such as health care proxies, discussed later in the book, go even further to protect the rights of patients.) With her living will in place and the many discussions we had with Mother’s doctor and nurses, I thought everything was all set. But we made a big mistake. We did not ask her doctor explicitly, Do you agree with this approach and will you promise to adhere to our mother’s wishes? He had simply listened to us, and we had erroneously assumed that he agreed.

When my mother was assaulted with a pacemaker, she had not been living for some time; she had been dying. The aggressive medical treatment did not prolong her life; it prolonged her death. The pacemaker did not restore Mother to health, but instead artificially prolonged her dying for five years, an indignity she had expressly stated she did not want to endure.

MY MOTHER’S LEGACY

My brothers and I never got over the feeling of trespass against my mother, and the experience profoundly affected my actions toward end-of-life patients for the rest of my career in internal medicine. My mother’s treatment was so outrageously wrong that it made me vow to try to change things for others. After that experience, I resolved that I would become an activist in promoting end-of-life rights and ensure that those rights were, as nearly as possible, honored. This book is an outgrowth of my experience helping patients and families make health care decisions at the end of life. Over the years, I worked hard to change some of the principles doctors have used in end-of-life care—away from the paternalistic approach and toward the empowerment of the patient’s right to choose the type of care wanted at the end of life.

THE FIRST LIVING WILLS

The first activist involvement I had was about forty years ago when I worked with the Massachusetts Committee for the Living Will. In retrospect, it is amazing to see how much opposition there was to the concept of the simple living will in the 1960s and 1970s, something we now regard as a routine matter. The living will stated only what one’s preferences were in a document that was to be used as an aid in medical decision making when the patient was no longer able to participate. Yet, the living will was the focus of vigorous opposition by the Catholic Church. I vividly recall testifying before the judicial committee of the Massachusetts legislature on behalf of a law that would recognize the right of the patient to make such statements, at the time tangling with a monsignor of the Church who stated that “it is noble to suffer.” However, society’s regard for the principles of a living will was slowly and surely changing, and people began to talk about it more and more.

THE MEDICAL PROXY

In 1983, a new concept for protection of end-of-life rights was first enacted into law in California when the durable power of attorney for health care was approved—the medical proxy law. This permitted patients to delegate to an agent the power to speak on their behalf, if they were unable to do so, with the same authority that patients would have had if able to speak for themselves. This was a big advance in protecting autonomy at the end of life, and it was quickly followed in the next decade by similar laws in other states. The living will and the medical proxy are both discussed in more detail in Chapter 12 on legal matters and medical planning.

DOCTORS SPEAK OUT

In 1989, a group of twelve leaders of American medicine wrote an article in the New England Journal of Medicine that outlined the responsibilities of the physician toward the hopelessly ill patient. I do not consider myself to be “a leader of American medicine,” but I did organize the production of that article (along with the sponsorship of the Society for the Right to Die). Ten of the twelve authors felt that it could be ethical for a physician to assist in the suicide of a terminal patient who was suffering intolerably, under certain circumstances.¹ This was the first time that, in a major medical journal in this country, such a statement had been made, and it brought about a great deal of attention and discussion.

At the time of its publication, I was on a one-week visit to my boyhood home to say goodbye to a brother who was dying of lung cancer. The storm of media attention that the article generated, resulting from that one sentence in the rather lengthy article, astounded me. For most of the first several days after the publication of the article, I was dealing with calls from newspapers, radio stations, and TV from all parts of this country and abroad—all in the same house in which my brother was dying at that very same time. Those calls persisted in a slowly tapering fashion for a year. It brought home to me how strongly people want ethical and moral approval for the option of ending life when suffering is intolerable. I found myself dealing at the same time with both the abstract principles of autonomy at the end of life and the realities of my brother who at that very time was dying a difficult death.

Similar articles that followed have given moral and ethical backing to physicians who have had discussions with patients about options for an earlier death. Timothy Quill stands out as a physician who courageously detailed and publicized his efforts to aid a suffering patient in 1991 and his own father in 2004 in articles in the New England Journal of Medicine.²

A RECENT CATALYST FOR THE PUBLIC’S ATTENTION

In 2005, the Schiavo case drew national attention to the tragedies that can occur at the end of life when planning is either not done or is not carried out in practice. The most troublesome problem in the Schiavo case was that no documentation—neither a living will nor a health care proxy—existed to substantiate that Terri Schiavo, a patient living in a persistent vegetative state, would not have wanted her life prolonged. In the absence of such documentation, Terri Schiavo’s husband, Michael Schiavo, ended up in a legal battle with her parents, Mary and Bob Schindler, who wanted to continue life support. Eventually, support was withdrawn, and she was allowed to die. But, by the time the conflict erupted in 2005 in the national media, Terry Schiavo had already lived in a vegetative state, with no hope for recovery, for fifteen years!

Proper attention to two turning points in decision making near the end of life can help prevent the problems my mother and Terry Schiavo had. These turning points must be recognized if serious difficulties are to be avoided. That is the crux of this book.

WHAT ARE THE TWO TURNING POINTS AT THE END OF LIFE?

The first medical turning point near the end of a person’s life is the time when the patient turns away from aggressive treatment aimed at restoring health and opts instead for comfort measures to ease the dying process. A second turning point may occur in a very few patients who are suffering intolerably in spite of all comfort measures that are properly administered, such that the patient wishes to hasten dying and thereby shorten the period of suffering. Critically important for this second turning point— that most patients do not need to face, but sometimes do—is the availability of legal options for relief, discussed later in this chapter and in Chapter 8 and 9.

THE FIRST TURNING POINT: OPTING FOR COMFORT CARE ONLY

During most of our lives, medical treatment is aimed at curing illness and restoring health. With our doctors, we push ahead vigorously to try to achieve a cure or improvement. The basic premise is that recovery to a satisfying, meaningful life is possible, and the efforts of patients and caregivers reflect this goal. Treatment may be rigorous, sometimes painful, and with many side effects, but they are justifiable and are usually accepted, when restoration of health is the eventual goal.

With all that our doctors can do now to restore health and prolong life, most of the time we are in debt to modern medicine. However, when cure or significant improvement is no longer possible in a person near the end of life, the goal of therapy should change to that of providing comfort care alone—not prolonging the dying process. This turning point is critical to recognize because, if it is not recognized, inappropriate extension of life occurs.

Only in the last half-century has this decision to change goals become necessary. In the pre-antibiotic era, desperately ill patients frequently succumbed to untreatable pneumonia, and many of the life-prolonging procedures we now consider routine simply did not exist. The situation then was far simpler with regard to decisions about pushing on with treatment. One did everything one could until the end when death mercifully supervened due to natural causes. Now, we have incredible technologies with which life can be medically improved and prolonged. This is progress, but when medical technology is not reined in appropriately, life can be prolonged beyond the point of positive return. The price paid emotionally and physically—and the quality of life—may not be worthwhile, and many of us in this situation might feel we were better off if nature were simply allowed to take its course.

The purpose of medical care at this first turning point should become that of easing the patient through the dying process as painlessly and comfortably as possible. This does not imply less care, but simply redirecting care toward reducing pain and distress, and allowing the patient peaceful last days. This turning point should be defined before treatment is begun that might unintentionally prolong life.

Another story illustrates the problem. This story along with that of my mother sets the stage for the rest of the book, which explains the ways patients can avoid these unfortunate situations and stay in control at the end of life.

RICHARD: A LONG DYING

Joseph Glenmullen had a haunting experience with the wrong kind of end-of-life care while working in the emergency department of a community hospital during his training. Like most community hospitals, it drew patients from the practices of nearby physicians and nursing homes. His story follows.

Especially on Friday afternoons and evenings, when the staffs of the local nursing homes would be reduced for the weekend, the ambulances would roll up to the emergency department doors one after another with elderly patients brought for more aggressive treatment than was available at the nursing homes. One of the most common scenarios was that of patients being brought in for aggressive treatment of pneumonia with intravenous antibiotics. These elderly patients typically had severe dementia, often Alzheimer’s disease. They had few cognitive abilities left: few memories and little or no idea of who they were or what was happening to them. In the hospital, they would be poked and prodded with intravenous needles. Often, they had to be restrained in the bed because they would not cooperate, their wrists and ankles bound to the bedposts. Their scanty clothing, a thin hospital johnny, was constantly twisting off them as they writhed in bed, exposing their naked vulnerability.

When I was on call, I would be awakened all night long, paged by the nurses to restart IVs these elderly patients had torn out in their efforts to wrestle free of their restraints. As I would restick them with their IVs, all I could think was, pneumonia would be these patients’ best friend, a release from their living deaths. Instead, they were subject to a relentless medical juggernaut.

One patient in particular, Richard, has always stuck out in my mind. He was wheeled into the emergency department having fallen out of bed at the nursing home and broken his hip. He had severe Alzheimer’s-type dementia; his mind was completely gone; one could not communicate with him in any meaningful way. His arms were gaunt and outstretched, tied to the corners of the hospital stretcher, and his legs were bent at the knees by contractions of what remained of his wasted muscles. Richard looked crucified on the hospital gurney.

Richard’s life had been devoid of any quality for years. I assumed he was coming to the hospital for control of his pain from the hip fracture. Imagine my surprise to discover he was being admitted for a total hip replacement! “Why put someone in his condition through such a traumatic surgery?” I asked one of the senior doctors in the emergency ward. “We don’t have time to ask those questions,” was the reply from the senior doctor as he looked forlornly at the rows of patients on stretchers lined up waiting to be seen. Then he added, with painful resignation, “His hip replacement will be practice for an orthopedic surgery resident.”

Looking at Richard, I knew I did not want to live out the last years of my life warehoused in a nursing home, with my brain wasted away, my carcass kept alive by merciless medical treatment, waiting to be used for “practice” in medical training. Nor did I want that to happen to anyone in my family, to anyone I love.

When I heard Richard’s story, the phrase “warehoused in a nursing home” jumped out at me. Harsh as it sounds, that’s exactly what happened to my mother in the five years she lived after getting a pacemaker. Even before Richard was medically assaulted with a new hip, with his severe Alzheimer’s dementia, he had no quality of life left. His was a failed turning point for many reasons: the lack of preplanning, the lack of an advance directive such as a medical proxy, the lack of involvement of family members who could have changed the course of his treatment, and, most of all, the lack of any recognition of the need for a turning point.

In Richard’s case, as in my mother’s, the doctors became too narrowly focused on treating a diagnosis instead of the patient. Richard was treated as a “hip fracture,” and my mother was seen as a case of “arrhythmia,” rather than the whole human beings they were. In both instances, nature was not allowed to take its course. Instead, aggressive medical treatment intervened to prolong their dying. This is also what happened to Terri Schiavo, who languished in a nursing home for fifteen years before the conflict between her husband and her parents came to a head in 2005.

THE SECOND TURNING POINT: A HASTENED DEATH

In rare instances after the first medical turning point toward comfort care only has been reached, even meticulously rendered, maximum comfort care is not enough to control a dying patient’s suffering. Under these circumstances, a hastened death is an option some of us might wish to exercise, and it may be the most humane approach. This is done only when death is clearly imminent, anticipated suffering is intolerable to the patient, and all comfort measures have failed.

Due to advanced medical technology, the majority of us will have to take the first turning point at some time in our lives— abandoning aggressive medical treatment in favor of comfort care only. But very few of us will ever reach the second medical turning point of hastening death because modern medicine is so sophisticated in controlling pain or distress. There are few failures to provide reasonable comfort. Still, everyone should be prepared in advance to consider this second turning point should it become necessary. Even in the rare instances in which pain or distress cannot be adequately controlled, some patients will still not want to hasten death. That is their right. Likewise, it should be the right of those who do wish to hasten death to do so, in these rare circumstances.

This second turning point will be discussed in much more detail in chapters toward the end of the book. We shall see that hastening death because of intolerable distress can take several forms, some of them absolutely legal and noncontroversial and some involving the patient’s directly taking his or her life, which can be much more complicated legally. As of this writing, in the United States, the latter is clearly legal only in Oregon, where such a death is usually referred to as “physician-assisted suicide.”

I prefer the term physician aid-in-dying or hastened dying because hastening of death in a terminal situation is different from what we normally consider to be suicide, which is most commonly thought of as the act of a person prematurely and inappropriately ending his or her life. By contrast, physician aid-in-dying can be seen as medical treatment, part of the spectrum of options for people suffering at the end of life.

Later chapters will discuss methods of hastening death used by patients in recent years, including methods that are legal and ethical, and also methods that are still evolving in their acceptance by public opinion and our legal system, such as barbiturates (in states other than Oregon) and the growing use of inhaling helium as ways of hastening death for terminally ill patients.

THE IMPORTANCE OF RECOGNIZING LIFE’S TURNING POINTS

Planning for and taking life’s turning points represent some of the biggest decisions you will make in life. This is true whether you are making the decision for yourself or helping a parent, spouse, or other loved one to make the decision. For this reason, turning-point decisions need to be formal discussions among the patient, family, doctors, nurses, and anyone else who will play a key role in supporting the patient once the decisions are made. Later chapters of this book offer the key issues and questions that need to be addressed to ensure that all aspects of the decisions are considered. These include looking carefully at the patient’s diagnosis, prognosis, second opinions, treatment choices, and quality of life—in addition to the various options that can help ensure a peaceful death.

The key to staying in control of one’s medical fate is educating yourself about the options, deciding in advance what course you want treatment to take, clearly communicating this to a medical team, making sure they agree to follow stated wishes (or finding others that do), and legally empowering family members to act on your behalf if and when you are no longer able to act because of physical or cognitive disability.

This topic has become politically charged. The Schiavo case demonstrated how the “pro-life” constituency in this country has organized itself against the right to stay in control of the end of life. This has become one of the most hotly contested issues in the national political arena, and has led many people to reflect on their own choices and values. Against this turbulent background, To Die Well is intended to provide you and your family with the information you need about the last days of your life.