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Dimensions of Dying
Yale doctors are helping their patients talk about death—and are hearing a lot they didn’t learn in medical school.
October 1994
by Bruce Fellman
The last time Mary Kathleen Figaro talked to Noel (not her real name), a cancer patient at Yale–New Haven Hospital, the woman was close to death. And yet, said Figaro, who this fall entered her third year at the School of Medicine, although the end was clearly in sight, Noel, an emigrant from Barbados who was in her early 30s, was not brooding about the past. “She kept on talking about going to immigration—she was looking directly at the future,” explained Figaro. “It was obvious she wasn’t going to make it, and she knew that, I guess, but against all odds, she was dreaming of a future. She taught me that you could have hope even in a hopeless situation.”
Noel died only weeks after her first conversation with Figaro, but not before providing the future physician with numerous other insights about the nature of the doctor-patient relationship at the end of, as well as throughout, life. But this “mentorship” was not simply the result of a happenstance meeting in a cancer ward. The women came to know each other because of an innovative and, according to a recent survey of 111 U.S. medical schools that appeared in the journal Academic Medicine, a unique approach to the once-taboo topic of death and dying.
The “Seminar on the Seriously Ill Patient,” developed in 1986 by Medical School chaplain Alan C. Mermann ’79MDiv, is an elective course, usually taken in the first year, that pairs each student in the class with someone who is dying. As a result of frequent conversations between acolyte and mentor—often several times a week over the course of a semester—along with readings, weekly discussions with peers, and plenty of private soul-searching, a doctor-to-be develops an understanding of what to say, what not to say, and when to say nothing at all.
“This is learnable information,” says Mermann, who is also a pediatrician. “But first, you have to have some direct, personal experience.”
A sizable number of students come to the course having had no experience whatsoever with death. “I’d never even been to a funeral,” notes Michael Fischer, who is going into his second year as a medical student.
Fischer’s teacher was a women in her mid-30s who was battling recurrent cervical cancer, and he recalls sitting with her while she underwent chemotherapy. “Her treatment was pretty routine and uncomplicated, but for her, it was everything,” he explains, adding that he can now see how easy it would be to lose sight of a patient’s perspective. “I just tried to be there for her to talk to, and I came away from our conversations with an understanding of what it’s like to be dealing with pain, extended disability, the stigma of having cancer, and mortality. I hope I can keep that knowledge on file.”
At most medical schools, these lessons in listening are hard to come by because the curriculum generally calls for little more than a few formal lectures on various aspects of end-stage diseases and a talk by a terminally ill patient or two about what it’s like to be dying. And while Mermann feels that this modest approach is infinitely better than the way the subject was treated when he was in school in the 1950s—typically, it was ignored—he argues that students and, ultimately, society will be better served by providing physicians-to-be with direct contact with patients whose care can bring out the best—and worst—in the medical establishment. “One hopes this experience will make them better doctors,” says Mermann, who is quick to add that he hasn’t done any follow-up studies.
Annie Egan ’92MD doesn’t need statistics to know how crucial the Yale course was for her. Now a senior resident in pediatrics at the Children’s Hospital of Pittsburgh, Egan took the seminar in 1988 and was mentored by a woman in her early 30s who was dying of advanced lymphoma. “There’s a saying around medicine that you learn the most from the sickest patients, and though her experience as an adult was very different from what I deal with in pediatrics, there was at least one lesson I’ve carried with me,” Egan explains. “I learned that the most important thing in the relationship was honesty.”
There was another critical lesson. In telling her life’s story, Egan’s teacher talked about how her boyfriend had left her as soon as her cancer was diagnosed and how she’d had to move in with her mother. “I’d had a fair amount of experience with death in my own family,” says Egan, explaining that in her case, the family came closer together each time one of its own died. In her teacher’s case, however, the family disintegrated.
One night while Egan was on call at the Children’s Hospital, an 8-year-old was brought in with blood in his urine. The mother was in tears, the pediatrician recalls, complaining that no one, including her child’s doctor, would give her a straight answer about what was wrong. An X-ray showed an ominous mass, probably a bladder tumor, and it fell to Egan to deliver the news.
There are doctors who would do so and then disappear, but Egan faced the family members directly. “I told them, ‘Your life has now profoundly changed, and it’s time to reach out for help.’ My teacher made me acutely aware of the fragility of family structure in a medical crisis, and how you have to treat the family, not just the patient. I wouldn’t have thought of that before taking the course.”
Too often in what one physician has dubbed the “high-tech wasteland” of modern medicine, the essential twin skills of empathy and listening get lost, says Mermann. There are many reasons.
Chief among them is what professors at the Medical School frequently call the “third-year syndrome.” Mermann explains that students, most of whom entered medicine with the altruistic motive of caring for the sick, often “run smack into disillusionment” in the third year of schooling when they begin the clinical portion of their education and have to shift their focus to technique. “They see patients winding up as little more than numbers, even called disparaging names like ‘scum bag’ and ‘dirt ball,’ and this leaves students startled and upset,” says Mermann.
Of course, a certain amount of detachment is essential, both for sound medical judgment and for psychological survival, but there is an ever-present danger that detachment will become what is technically known as alexithymia, the inability to feel emotion. Worse still, in the ever-faster-paced world of the hospital where most doctors learn the trade, there is, increasingly, too little time to develop any kind of relationship with someone who will eventually be well, let alone someone who is dying.
“A hospital like Yale–New Haven is simply a very difficult place to carry out the care of a terminally ill patient,” says Gerard Burrow, dean of the Medical School. “The whole place is set up to run on a 24-hour-a-day, battle-station type arrangement.” Still, those doctors who avoid becoming shell-shocked and continue to have the “healer’s touch” tend to be lionized by those who are in their care. Horror stories abound about the physician who walks in, looks at the chart, and doesn’t even ask a patient’s name. “Compare this,” says Mermann, “to the doctor who sits down on your bed, takes your hand, and asks, ‘How are you this morning?’ The amount of time the physician is in the room is exactly the same—you’re still getting 37 seconds—but to the patient, the difference between the two doctors is phenomenal.”
Never is the difference more noticeable than when someone is dying, and yet at that time, a physician’s response is frequently to pull back, even vanish. Medical students, notes Mermann, are understandably anxious about confronting death, but this timor mortis—“the fear of death”—often persists among the doctors who are training them. And since, as Dean Burrow notes, students in their clinical training learn primarily by example, it is not surprising that they too come to avoid this painful subject.
Another barrier to dealing with the dying is that many physicians see death as a sign that they’ve failed. That syndrome is outlined in detail in the recent bestselling book, How We Die: Reflections on Life’s Final Chapter (Alfred A. Knopf, 1994). Written by Sherwin B. Nuland ’55MD, an associate clinical professor of surgery at Yale, it explains that while doctors are exhaustively trained to solve what the author terms “the riddle” of disease, admitting defeat in the face of the inevitable and providing care without cure are rarely part of the modern physician’s education—or inclination.
Mermann’s popular course, which last year was taken by nearly half of the Medical School’s first-year students, is designed to create a cadre of doctors who, having seen the effects of a terminal illness through the eyes of a patient, are less likely to break, however inadvertently, a central tenet of the physician’s creed: First, do no harm.
And harm can indeed result from what amounts to a fundamental failure to communicate. Nuland, who has more than 30 years of surgical experience, recounts numerous instances of “heroic” lifesaving interventions, not all of which turned out to be, from the patient’s point of view, wise or even desirable. “Doctors really believe in their own beneficence, and they think that whatever recommendation they make is the right one for their patient,” notes Nuland. “But that’s an enormous obstacle to reality because it means that physicians approach the patient’s problem with a whole different set of values than those of the patient.”
As an illustration, Nuland relates the case of a 92-year-old woman he calls “Hazel Welch,” who arrived at YNHH unconscious, a victim of a perforated digestive tract. Already afflicted with severe arthritis, gangrene, and arteriosclerosis—her leukemia was in remission—Miss Welch, when she regained consciousness after treatment in the hospital’s emergency room, refused surgery. “In a broad Yankee inflection, she told me that she had been on this planet ‘quite long enough, young man’ and didn’t wish to go on,” Nuland writes.
The doctor heard what the patient was saying, but didn’t absorb its importance. “How can you let someone die when you think you can save her? It made no sense,” Nuland explains. So, deliberately minimizing the post-operative difficulties his patient would face, he talked her into agreeing to the surgery, which she survived, only to die from a stroke, probably brought on by the procedure, two weeks later.
From his current vantage point as a retired, 63-year-old surgeon, Nuland views his intervention in the case of Hazel Welch as clearly inappropriate. “Had I the chance to relive this episode, or some others like it in my career, I would listen more to the patient and ask her less to listen to me,” he says.
Nevertheless, he would have operated. “The accepted code of my specialty demanded it,” he says. “My treatment in this case was based not on her goal but on mine. I pursued a form of futility that deprived her of the particular kind of hope she had longed for—the hope that she could leave this world without interference when an opportunity arose.”
Doctors who don’t know their patients—a common circumstance in the tertiary-care hospitals where most people now come to die—are particularly likely to pursue what ironically is a hopeless path. “We take away their clothes, and, as Eric Cassell, a practicing internist, has said, we take away their personhood—we don’t see patients in their setting,” Nuland says. “But you make one house call, and your viewpoint of a patient changes so much. You see a crucifix, look at certain kinds of books, hear bits of conversation, walk up three flights of steps, and you understand things you never understood. Only a doctor who knows that house, and knows the person who lived there—and not a doctor who met the patient on the day the kidneys began to fail—can help that person make decisions about life and death.”
Nuland, and many others who are embroiled in the debate over the direction of health care in the U.S., argues for the creation of a new breed of family practice doctor: a cradle-to-grave physician who is trained to radiate the empathy embodied in a Norman Rockwell portrait as well as to deal with most health problems in his or her own office, while acting as a broker when there is a need for specialists. However, current trends in medicine-like the push toward health maintenance organizations with their constantly changing cast of caregivers—and the mobility of the American public, make the return of the family doctor more of a fantasy than a realistic prospect. Says gastroenterologist Howard Spiro, professor of medicine and director of the Medical School’s Program for Humanities in Medicine: “We’re all strangers taking care of strangers. Everyone ought to have some family physician or nurse practitioner out there who does know you, but the notion that you’ll always know your doctor is hopelessly romantic.”
All of which—the reluctance to confront death, the need to keep fighting it, and the conflict of interests—can conspire to place terminally ill patients and their families in a nightmarish limbo, a lonely place from which the likes of Jack Kevorkian and his suicide machine sometimes seem to offer the only hope of easy escape.
But some 20 years ago, Morris Wessel, clinical professor of pediatrics, Florence Wald, former dean of the School of Nursing, and a number of colleagues created an alternative when they started the first hospice in this country. Modeled after the nursing-intensive approach to dying that was pioneered in England by Cicely Saunders in the 1960s, the hospice was developed to offer, either in a specially designed facility or, when possible, in the home, a kind of care that was radically different from what existed in hospitals.
There comes a point when nothing more—no additional testing, surgery, or any of the myriad other procedures in the medical arsenal—can be done to reverse the inevitable. “At a hospice, we help patients and families deal with the end,” says Robert Donaldson, a Yale professor of medicine and a doctor at Connecticut Hospice, Inc., which is located in Branford. “We provide support, relief from symptoms, particularly pain, and the assurance that we’re here, no matter what,” says Donaldson. “If you don’t do that, you haven’t finished your job as physician.”
Death can be hideous, cruel, and utterly capricious, but when the pace of life’s final journey is somewhat stately, even predictable, the hospice—there are now more than 2,000 in this country—offers what many consider the closest thing to a “good death” on this planet. “The surroundings are pleasant, and the rules are loose—if you want to have a beer, so be it,” says Donaldson, noting that right until the end, patients retain their personhood. “And they’re so relieved to get out of the stream of diagnostic technology, where they’re punctured and invaded all the time.”
Less treatment and more caring may be just what the doctor ordered—or should order, says Donaldson. “The patients are grateful, because I can provide what they need. I find that very enriching.”
To every thing there is a season.
So notes the Old Testament book of Ecclesiastes, and in the modern debate over how to best care for the dying, that ancient declaration provides worthwhile advice, says Richard Selzer, a retired New Haven surgeon and former Yale professor whose most recent book, Raising the Dead, offers an intimate look at the author’s own harrowing and near-fatal brush with Legionnaire’s disease. “We don’t accept death as a natural phenomenon—this is wrong,” says Selzer, acknowledging the irony in his statement. For had the 67-year-old physician’s doctors been more accepting, he wouldn’t be around to tell his tale.
While there is a time to die, says the author of Ecclesiastes, precisely when is now a matter that modern medicine has taken largely out of the hands of God and nature. But just as the women’s movement helped reclaim birth from the medical establishment, patients are asserting their formerly God-given right to a decent end. At Yale, doctors-to-be are gradually learning to listen.
Peter Bernstein ’86, ’91MD, took Mermann’s course in 1987 as a kind of test. “I was afraid that I couldn’t deal with sick or dying people,” says Bernstein, now chief resident in obstetrics and gynecology at YNHH. So he was terrified when he met “Bob,” a man in his 40s who was losing his fight with a long-term illness. Over the course of a semester, the student sat with his teacher through CAT scans, transfusions, and the interminable waits for appointments. “Seeing Bob go through all this opened me up to the idea that explaining things and just sitting with a patient is really important,” notes Bernstein, recalling his grandfather, a pediatrician who practiced medicine in the days before antibiotics when often the best thing a doctor could do was hold a patient’s hand. “I’m still learning as a doctor, but my real education began with Bob.”  |
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