Duke University Alumni Magazine

Preparing For The Final Transition
Are You Ready To Die?
by Bridget Booher
Illustration by Jon Lezinsky

The debate over euthanasia has polarized the country in much the same way as abortion or the death penalty; but it has also opened a window onto a much larger, and many would say more important issue: the quality of care for the dying

s families come together this season to celebrate Hanukkah or Christmas or Kwanza, there's a topic of discussion that should--but probably won't--be broached. The subject is death, that inevitable exit we all will make. While our entrance into the world was likely a joyous occasion that required nothing from us, our deaths will demand more. Do you know how your parents want to spend their final weeks? Whether your sister would want to be kept alive on a ventilator if she had an incurable condition? What would make life not worth living anymore for you?

     Unfortunately, these frank reflections often take place when it's too late, when a loved one's prognosis is poor. We hope and pray and convince ourselves that everything will be all right. But suddenly we find ourselves standing next to a grandmother or son who lies barely conscious in a hospital bed, being asked to chart a course of care-giving that ranges from wait-and-see (while racking up astronomically expensive hospital bills) to questioning whether to withdraw artificial life support (Is there more we could do?).

     Ideally, dying should be easy. We fall asleep and don't wake up. Or we slowly drift from consciousness into a comfortable fog that ends with a natural cessation of our hearts or lungs. The reality, however, isn't always so peaceful. We no longer die the way we used to; most of us will take our final breaths in institutions like nursing homes or hospitals rather than in our own homes. As advancements in medical technology have made it possible to prolong life, we as patients expect--in fact, demand--that all resources are made available to us, even when we're faced with a terminal disease. We die with tubes and monitors in place, technological experiments in resisting the inevitable.

     In the larger public arena, there's been renewed attention to death and dying in America. Most visibly, the debate over euthanasia--from the questionable tactics of retired pathologist Jack Kevorkian to this summer's two Supreme Court decisions allowing states to continue banning physician-assisted suicide--has polarized the country in much the same way as abortion or the death penalty. (While the word euthanasia is often used as a euphemism for mercy killing, its literal meaning is "good death.") The controversy has divided physicians, patients' rights groups, ethicists, economists, religious leaders, nurses, legal experts, and theologians. But it has also afforded a window onto a much larger, and many would say more important, issue: the quality of care for the dying.

     "Our society in general is a very death-denying culture," says James Tulsky, assistant professor of medicine at Duke Medical Center and Durham's Veterans Affairs (VA) Medical Center. "My view is that assisted suicide may be permissible in those rare circumstances where patients are suffering so much that pain simply cannot be alleviated by the best that palliative care has to offer. But the real issue is that so many people are getting inadequate palliative care."

     There are a number of reasons why this is so, none more central than the doctor-patient (and by extension, family) relationship. Physicians aren't always comfortable talking about death, although it is a natural milestone in one's life. Doctors have been trained to view death as, if not outright failure, then the least desired outcome. Given the imposing armamentarium available, there's always one more test to run or one more intervention to try. Patients share this belief that the next assortment of drugs will make a difference, or that even though very few people recover from a given procedure, they will be the exception.

     "Doctors don't usually relay the negative aspects of prognosis until the very end," says Tulsky. "The treatment team is trying very hard to communicate to the family that they should maintain hope and keep focused on the bright side of things. Meanwhile, the family is getting lots of different messages. They're being told extremely technical things--that blood pressure is constant or kidney function has improved--so they hold on to these minute changes even though, in the grand scheme of things, they mean very little if the patient has multiple problems."

     "What's going on in the doctor's mind," he says, "is that this patient is sicker than sick, and, if he really thought about it, the prognosis is no higher than a 30 percent survival rate. Another week goes by--no improvement--and now the prognosis is about 10 percent. But he doesn't communicate that to the family. So the day comes when the doctor goes to the family and says, 'Look, we should think about withdrawing treatment.' And the family is shocked. 'What?! But yesterday you said that kidney function was better.' So those transition periods can be very, very difficult."

     Tulsky, who came to Duke in 1993, is on the leading edge of a medical education revolution. Through the Open Society Institute's landmark Project on Death in America, Tulsky was chosen as one of the inaugural Soros Faculty Scholars (funded by philanthropist George Soros). With additional funding from the Robert Wood Johnson Foundation, he is teaching medical students and residents how to grapple with the complex challenges of improving communication between doctor and patient, specifically in terms of end-of-life care.

     PRIME, a primary care training program for VA residents, is a combined inpatient/outpatient rotation that lasts for three months rather than the usual one month. The team-based arrangement simulates the demands and rhythms of private practice, with an additional academic component that explores the practical and philosophical implications of practicing medicine. Tulsky says the intensive, four-year-long study will serve as a controlled trial to see how PRIME residents and their patients fare as compared to the residents (and their patients) who did not go through the PRIME curriculum.

     Similarly, PRACTICE, a one-year-old innovative curriculum at Duke Medical Center, exposes medical students to primary care training. Beginning in February, ten hours of classroom discussions will be added to students' educations; topics will range from how to break bad news to eliciting patient treatment preferences, and they may also visit hospices and keep journals of their experiences. Training medical students about death and dying is now starting to become an integrated part of the curriculum for many medical schools. But as recently as 1993, an American Medical Association study found that just 26 percent of 7,048 hospital-residency programs included such a course.

     Trained as a general internist, Tulsky has spent his professional career examining the intersection of medicine and social science. As an undergraduate at Cornell, he majored in Biology and Society, an interdisciplinary program that combined biomedical science with courses on philosophy and ethics. As a medical student at the University of Illinois-Chicago, Tulsky developed an independent study in geriatrics and ethics, including a stint at the Hastings Center for Bioethics. His medical training at the University of California-San Francisco, augmented by a Robert Wood Johnson Clinical Scholars Fellowship, paired him with Bernard Lo, one of the country's leading ethicists.

hat Tulsky and others have found is that doctors and patients generally talk in two different languages--medical terminology versus life experiences--which results in frequent, potentially life-altering misunderstandings. For example, a physician asks a dying patient, "Do you want us to do everything we can to save you?" That kind of phrasing, says Tulsky, gives the patient no other option but to say yes. But the communication doesn't even have to be that binary to have a negative effect. Instead of asking patients and their families to weigh, for example, the serious risks of CPR, a physician might frame the procedure in vague terms, such as "sometimes it's futile, sometimes it's traumatic." (Unlike the almost routine successes of CPR on shows like ER and Chicago Hope, the procedure carries grave risks and is usually unsuccessful--just 7 to 14 percent of hospitalized patients who undergo CPR survive to be discharged.)

     In a study conducted by Tulsky, ethicist Lo, and Margaret Chesney in 1992, only 13 percent of medical residents at three teaching hospitals mentioned the patient's likelihood of survival after CPR. Less than 20 percent mentioned such adverse outcomes as neurological damage or prolonged stays in intensive care units. Remarkably, these pivotal conversations lasted a median of ten minutes, with the physician doing most of the talking. (Perhaps not surprisingly, given the brevity and one-sided nature of these discussions, a patient's personal values and goals were addressed in just 10 percent of cases.)

     Duke oncology resident Amy Abernathy has worked closely with Tulsky and shares his sensitivity to the power of communication. It's a delicate balance, she says, to deliver frank details about a patient's condition while still providing encouragement. She admits to being frustrated when patients ask how long they have to live. "I never know what to say. We try to give general ranges--on the order of weeks to months, or months to a couple of years--instead of absolute times." If they persist, she'll tell them the percentages, but with a caveat: "I'll say, 'Now listen. That's what happens to 60 percent of patients, but what makes you think you're not going to be part of the 40 percent? Because what really matters is what's going to happen to you, not what's going to happen to sixty out of a hundred patients.' You want to make sure that people have hope they'll be among the 40 percent, because study after study has shown that when people have a positive outlook, or feel they have God on their side, they do better. At the same time, you don't want to give them so much false hope that it's time to say goodbye to their grandchildren and they haven't done so."

     Given the demands on a physician's time, and the pressures of managed care to process as many patients as possible, is it feasible to expect successful, introspective exchanges to be the norm? Tulsky admits that it's challenge enough to gauge what matters spiritually and emotionally to each individual patient, much less incorporate that into every encounter. "What often happens is that the first thing out of a person's mouth tends to get ten minutes, and that's not what's most important. Patients often don't say what's most important first because they're embarrassed. In the medical world, this is called 'Oh, by the way...' You're walking out of the exam room and the patient says, 'Oh, by the way...' and that's the thing that's really bothering them. At that point, you've already used up the allotted fifteen or twenty minutes.

     "What I usually do is rob Peter to pay Paul, so if I have a patient who really needs thirty or forty minutes, I try to balance that against patients who only need ten. But the point is that when you get those 'Oh, by the ways...,' it indicates that your communication could have been more efficient. It's extremely hard. Even though I teach this stuff, and think I'm reasonably decent at it, the time factor is just so tough."

     Offering a range of medical options for ill and dying patients is crucial for mapping out day-to-day treatment plans. Yet a larger issue remains: How will a patient live out her final months or days when that time comes? If each of us can articulate a personal vision of the good life, what then do we hope for in a good death? Will there be pain? Will it be scary? Can we be in control? It's hard enough to ask ourselves these questions, much less articulate them for a physician who may only be with us for twenty-minute intervals at a time. Similarly, doctors responsible for dying patients can find it hard to make the transition from focusing on curing to caring.

     Physician Keith G. Meador Th.M. '86 is an associate clinical professor of psychiatry and pastoral theology. He divides his time between supervising medical residents and students at the VA on inpatient service, and teaching pastoral care courses at the divinity school. He's seen first-hand how difficult it can be for physicians to concede that "healing" is no longer a prospect. "We're supposed to make life go on," he says. "We're not trained to be present and unafraid of suffering. That's hard for a lot of physicians. I think that's one thing the theological community has to offer the medical community. I do not think there's a split between the world of medicine and the world of theology. I think this is a place where that crossover is vital. So often when someone's dying, physicians feel like failures. But that kind of thinking distracts from being able to sit with someone, not to have to answer them, not to have an intervention, just be quiet and be with them. The idea that a doctor would sit with a patient knowing that things don't look good could be powerfully comforting."

     Meador says he clearly recalls his earliest experience with death in a clinical setting. He was a medical student in a large urban hospital and a patient died of respiratory illness. "It happened in the middle of the day, in a place where people died every day, but I felt the need for something more, for some ritual or an acknowledgment. I was one of the younger people on the medical team, so I looked to the role models around me--how are we supposed to act? So you fall in line even though you feel uncomfortable."

     Yes, death is a routine occurrence, says Meador, but it's important to weigh the physical absolute with the recognition that "it happens in a very particular way for each person in their life. And I think there's a need to sort through how to honor that. Death is not something to be avoided at all costs, but to be honored" with regard to how the patient and his or her family lived their lives. For that kind of recognition to develop, the health care team, family members, and patient must all work toward a satisfying final chapter. (Tulsky agrees, saying that doctors should routinely ask patients--not just those who are sick, but also those who are still young and healthy--what role spirituality plays in their lives. "I find the majority of people are incredibly happy and comfortable to talk about it," he says. "It opens up a whole new level of understanding and trust when they know I care about their religious or mental outlook. They may not come to me for their spiritual counseling, but at least they know I'm aware of that aspect of their lives.")

     Meador says he's keenly aware of how the depersonalized setting of hospitals can become counterproductive to meeting the psychological needs of the dying. It's important for people to feel that their lives have been important, he says, that the unique story of one's life is heard and appreciated. "Most of us no longer live rural lives surrounded by nature and animals and an understanding of the fullness of creation, which includes death, and an acceptance that we will die, too," he says. "Instead, we take people out of their communities and away from a place they understand and where they belong. We make their [life] story disjointed. I've seen people who could say unequivocally that they were ready to die--not that they had the right to die or wanted to take their own lives--but were ready to die. They'd told their stories and they were with family and surrounded by people they loved, and they were tired. I grew up in rural Kentucky and the phrase you would hear is, 'I'm ready to go.' I think that's great; I find that very believable."

s a family physician in the Midwest, Harold Koenig M.H.S. '90 became fascinated with how his older patients dealt with the enormous medical, emotional, physical, and social problems associated with late-life illnesses. He went back to school to study a host of geriatric issues, including depression in the medically ill. Now an associate professor of psychiatry and internal medicine at Duke, he is also the director of the Center for the Study of Religion/Spirituality and Health. He says he agrees with Meador that the end of life is a wonderful opportunity for growth and fulfillment. "Many powerful things can happen during those last days and weeks of life," he says. "What we need to do is figure out how to relieve suffering during that time so the person can work on those tasks of dying. That's absolutely essential. Even if you're dying, you're still here now, and if you have anger or resentment toward family members, or unresolved issues, you have to come to terms with it. There's some of that in everyone's life."

     In a report published in the October issue of The American Journal of Psychiatry, Koenig and four colleagues (including Duke sociologist Linda George Ph.D. '75) found between 40 and 50 percent of patients at Duke Hospital over the age of sixty had significant depressive disorders. Because the study was a random sample of patients admitted for general medical services, the high prevalence of depression among this overall population has profound implications for terminal patients.

     "If you have a man who has worked all his life and has been very active in his community, and suddenly he's an invalid, that has to have an effect on him," says Koenig. "Our self-images are built upon what we do, what we accomplish, what we produce, and, suddenly, all that is gone. Now, in his mind, he's become a liability and he worries about his family having to take care of him. It's easy to see why people lose hope."

     Koenig, whose research documents the positive effects of religion and spirituality on health, says that the medical field needs to do a better job of diagnosing the emotional toll of debilitating illness. "I've seen it happen again and again: When you treat these people for depression, they get better; they learn how to cope with their disability. Once you treat the depression, you try to motivate people to get more involved and engaged in life, to give of themselves. Thinking about their own problems is the worst thing they can do. I've had patients who are severely ill, but they find meaning in doing little things for other people. If you have the cognitive framework that allows you to see purpose in your life, you can tolerate almost any situation."

     In the absence of adequate treatment, says Koenig, it's no wonder that many clinically depressed patients come to view dying as an attractive option. "I can understand why people get angry and want to take control of the situation by considering suicide," he says. "With suicide, you often find that anger is present--anger because they feel neglected or abandoned or misunderstood. And it's so much less expensive [for a doctor] to say, 'Go ahead,' or, 'Here's something that will help you.' "

     Like Koenig, Harmon Smith says that calling on physicians to make those kinds of decisions sets a dangerous precedent. A professor in the divinity school and in the department of community and family medicine, Smith says that doctors should be in the business of alleviating pain, not hastening death. "Frankly, we don't need physicians to be killing patients. They will die in due course. Once we suspect that a physician may not be committed to our living well-being, then I think we become suspicious of every physician. And that will undermine the kind of trusting physician-patient relationship that is absolutely essential to therapy."

     Smith says if we as a society agree by thoughtful discussion (rather than judicial fiat) that assisted suicide has its place, physicians nonetheless should not carry out such procedures. "I'm willing to entertain as a serious suggestion that priests, ministers, and rabbis would be the prime candidates for this responsibility. I've never understood why physicians are the ones to perform abortions. Abortion, in some ways like physician-assisted suicide, seems to run counter to everything that physicians are trained to be and to do."

     In addition to the often-quoted phrase Primum non nocere ("First, do no harm") from the Hippocratic Oath, Smith says there is a second moral maxim that both physicians and patients seem to have forgotten. "Physicians are under no obligation to offer, and patients under no duty to receive, treatments which are not beneficial. Now, that is logically as plain as the nose on one's face, but the interesting question is, what is beneficial? And that will vary from case to case. But apart from heroism and martyrdom, killing has never in Western culture been thought to be beneficial."

     Proponents of assisted suicide contend that there are instances in which death is a release from pain and protracted suffering, and that each individual should be allowed to decide his or her own destiny. Smith says such thinking runs counter to the realities of death. "I think the moral struggle has virtue. Dying is not without its tragic dimensions, but I don't know any aspect of the human condition that is without a tragic dimension. Health and happiness are among the most uneven and unequal claims any of us can make. I think if we had better acquaintance with death, nobody would ever talk about 'death with dignity.' Because dignity, at least as conventionally understood, seems to be the opposite of what in fact occurs when one is dying: You are deprived of all that autonomous independence you imagined you had throughout your life."

ack in the hectic atmosphere of the VA hospital, James Tulsky's medical residents confront these moral debates head-on. During a session devoted to assisted suicide, Tulsky draws from a Journal of the American Medical Association essay by physician Timothy Quill on communicating with dying patients. (Quill gained national prominence in 1992 when he wrote in the New England Journal of Medicine of helping a patient commit suicide by prescribing barbituates and instructing her on the needed dosage.) In the JAMA essay, Quill presents the case of a sixty-seven-year-old man with inoperable lung cancer who required a fair amount of sedation to deal with pain. One night, the patient turns to his physician and says, "Doctor, I want to die. Will you help me?" Tulsky asks his students how they would respond. At first, there are a few seconds of silence, but the debate quickly gains momentum.

     "If I were forced to answer him," says one young man, "I would have to say no, because that's my value system. But I wouldn't end it with 'no'; I'd try to continue the discussion in order to understand him better and help him explore the alternatives."

     "I'd help him [do it]," answers another. "That's my value system."

     "But if we're using a patient's value system to guide their end-of-life decisions, we're helping their decision-making process by complying with their request," says a third. "Our value system shouldn't enter into it."

     A young woman shakes her head in disagreement. "We don't do everything a patient asks for just because they ask for it. If we're uncomfortable with what they want to do, we can refer them to another doctor."

     Tulsky has been listening attentively, nodding as the group wrestles with the possibilities. "No physician can be asked to do something against his or her moral and religious beliefs," he concurs. "You can always refer the patient to someone else. But what's more important is that you open up a dialogue with this patient. Ask him, 'What are you afraid of? What do you want to accomplish in the time you have left?' Don't make the assumption that he's asking for death. He may think that's what he's asking for, but he may not. So you might say, 'Let's explore your wishes or your concerns about suffering and then I can help you.' You are not saying you're going to help him die; you're simply offering to help."

     Tulsky asks the residents what kinds of fears the dying patient might express, writing their answers on the board. These include pain, being alone or dependent, loss of control, becoming a financial burden, death itself, depression, and experiencing spiritual crises. Looking over the list, he notes that "with the exception of pain, none of these are physical. We can promise good pain control; that we know. But what about these other fears? They are very daunting. You can certainly encourage the family to rally around the patient. But you can also reassure the patient that you won't abandon him, that you will be there for him."

     Given his life's work, Tulsky later admits that he has entertained notions of his own death. "The idealized American death is at the age of ninety after you've played four sets of tennis, had a wonderful dinner, made love to your spouse, and then you go to sleep and don't wake up. And that's not my idealized death. Mine is to die with time, maybe an illness that's not too painful, so that I could prepare myself. I'd probably want to die at home with the people I love around me, having resolved most of the things in my life."                                            


     Martha Henderson's first job after graduation from nursing school was working at San Francisco General Hospital. One of her patients, a frail, elderly patient with advanced arthritis, told Henderson B.S.N. '68, M.S.N. '78 that she was, essentially, ready to die. But when the woman went into cardiac arrest, Henderson and the attending physician began the customary CPR procedure. "We were pumping on this little lady's bony chest and doing resuscitation and I knew very deep down that this was not right," recalls Henderson. "I thought, this lady is ready to die. Why don't we just let her die?"

     Now a clinical assistant professor at the University of North Carolina at Chapel Hill's School of Nursing, Henderson has committed her professional career to the practical and ethical needs of the geriatric population. Like James Tulsky, she is interested in the social and spiritual dimensions of caring for the dying, and in improving how such care is administered.

     In addition to her nursing degrees, she earned a master's from Yale's divinity school and a doctorate of ministry from the Southeastern Baptist Theological Seminary. She's worked as an adult and geriatric nurse practitioner, written extensively on death and dying, been the director of outpatient and clinical services at a private retirement community, and served on hospital ethics committees. In a sense, Henderson has devoted her life to thinking about dying.

     As an educator, she is skilled at leading families and individuals through the formidable task of talking about dying. She urges everyone who wants a natural death to have both advanced directives: a living will and a durable power of attorney for care (someone to act as a surrogate decision maker for your wishes in the event that you can no longer communicate). These documents are available through a hospital's patient relations department and can be notarized at a bank.

     It's crucial to share copies of these documents, including specific wishes for end-of-life care, with family members and physicians. For those people who haven't yet addressed these issues, she recommends starting a family conversation with some very general, non-threatening observations. "You begin by saying something like, 'Mother and Daddy, I really care about you and want to honor your wishes and I need some information from you. Even though I expect you to be with us for a long time, life is very unpredictable and you never know how it will unfold.'"

     After this affirmation of a person's current status, says Henderson, you can then inquire about his or her health more specifically. How does your primary health-care provider think you're doing? How do you think you're doing? By building from the information people already have, it's a logical step to ask whether and how that person imagines his or her own death. "A good opening question is, 'What makes life worth living for you?' And the corollary, 'What would make life not worth living for you?' And from there you can get more specific, including thoughts about artificial life support in the face of terminal illness, depending on the person's comfort level," she says.

     With her own patients, Henderson helps clarify the myths and fallacies surrounding the biological reality of death. For example, she's found that some people are convinced that living out one's days on life support is preferable to having it withdrawn. "Dying of dehydration and inadequate nutrition is actually a very comfortable way to die if good nursing care is given," she says. "When people are dying, they often lose their appetite and thirst, and endorphins (natural opiates) are released. It's a natural part of the dying process. You become less conscious and you drift away and it's very gentle. People need to be reassured that it's not a painful death, that we can promise intensive comfort care, including pain medication as needed, while this process takes place."

     Once you're able to explore the scenarios that a loved one may fear, and discuss the medical options available (preferably with thoughts from the primary provider), Henderson says it's important to bring the conversation full circle. "You can end by saying, 'I hope you will continue to live a long time. When your time to die comes, I will do all I can to honor your wishes.' I tell patients that this conversation is a gift to their families because it helps them with the responsibility of end-of-life decisions for a loved one. Ultimately, an additional purpose of these conversations is to help families realize the preciousness of life now."

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