A Time to Die. Part 3: Doctors' dilemma


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wo emergency medical technicians carry Earley, in his wheelchair, up the stairway from his apartment. A big gray sweater hangs loosely from his thin shoulders. Like an old man, he wears slippers and a blanket over his legs. The EMTs roll him into the ambulance. It is Nov. 22, time for a checkup at the Veterans Administration with Dr. Normand L. Decelles, Earley's doctor throughout his ordeal.
      Decelles knew the first day he met Earley, in the fall of 1994, that this was no ordinary patient. The new patient presented the young doctor with a professional 8-by-10 color photograph of Earley's open hand. Pointing to a whitish blemish resembling a callus on the palm, Earley said, "Nobody has been able to tell me what this is."
      "Looks like herpetic whitlow," Decelles replied, diagnosing a viral skin infection.
      "You're absolutely right!" Earley exclaimed. "I am so impressed."
      Earley would continue to enjoy testing his doctor's knowledge, bringing him stacks of printouts from the Internet.
      It would be hard to find two more different men: Earley, with a bushy mustache and unruly strands traversing his balding top, brimming with opinions and enthusiasms, smelling of tobacco from his last hurried smoke outside the hospital. Decelles, nine years his junior, speaking in measured tones, with a cleanly bald head, trim beard and the smooth skin of someone who probably eats his vegetables.
      But the sharpest contrast lay in how they viewed Earley's diagnosis, and his future.
      Earley told Decelles that he wanted to kill himself once his Lou Gehrig's disease had progressed to a certain point. Decelles would not hear of it. The Veterans Administration has a policy opposing physician-assisted suicide, independent of any state law.
      Decelles said that the VA could care for Earley. When he became unable to swallow, drugs could reduce salivation, so he wouldn't drool so much; when he reached the point at which he was gasping for breath, the terror could be assuaged with anti-anxiety drugs. He could have an acceptable death -- there was no need for suicide.
      To Earley, that sounded anything but acceptable. What could medicine do about a life rendered pointless and humiliating? What was the value of hanging on to the bitter end, causing trouble for everyone and contributing nothing, enjoying nothing?
      On this November day at the VA, Decelles discusses the results of a psychological examination that Earley agreed to undergo last week. Decelles wanted to assure himself that Earley was not seeking suicide because of a treatable mental disorder.
      "There's no evidence of depression, psychosis or anything that would cloud your judgment," Decelles says. "I needed to make sure."
      "Will you give me a scrip for Nembutal?" Earley demands, referring to a barbiturate that in sufficient quantity could kill him.
      "Not a chance," says Decelles.
      "I want you to be supportive of my choice."
      "I am supportive of Nöel Earley's autonomy to the end."
      "Then give me a scrip."
      Decelles shakes his head. They talk about Earley's requests for physical therapy and for treatment of his left shoulder, a continuing source of pain since a fall last May.
      "I want lidocaine in the acromial space," Earley instructs his doctor.
      "Oh yeah?" Decelles replies, grinning gamely. "How many cc's?"
      "Forty. Gimme." Earley smiles and, glancing at Decelles's feet, inquires, "Do you own any colorful socks?"
      Earley is concerned about a hard lymph node in his groin and -- more serious -- a soreness that he fears is a precursor to a bedsore.
      Decelles suggests a warm compress for the lymph node and changing positions every two hours to avoid bedsores. Earley points out that he lives alone and is incapable of either of those things.
      "I'm concerned about your being alone," says Decelles. "I don't think there's an easy solution. You want to stay alone; I respect your autonomy. If I were in your shoes I would not want to go to a nursing home; I would not be comfortable being alone. Ideally, the answer for you is to live at home with someone."
      "Come visit me," Earley says. "Come over and see what my experience is like, and tell me again why you won't give me a scrip for Nembutal."

n seeking a lethal dose of Nembutal from Decelles, Earley was asking his doctor to do something that is explicitly illegal in 35 states, including Rhode Island, and illegal by common law in 9 other states and the District of Columbia.
      And yet it is not, in today's world, an unusual request. Nor is it one that every doctor refuses.
      Various surveys have found that from 12 to 21 percent of doctors receive requests from patients for lethal doses of medication, and 2 to 7 percent of all doctors comply.
      Usually, it's done in secret. In the few cases in which physician-assisted suicide has been made public, the doctors were not successfully prosecuted.
      The Hippocratic Oath forbids doctors to give "deadly medicine to anyone if asked," but nowadays doctors do not take the original oath -- which also forbids abortion and requires allegiance to the Greek god Apollo. Most graduating medical students take a modified version of the oath, which varies from school to school. (The oath at the Brown University School of Medicine, written by the Class of 1975, makes no mention of assisted suicide, but includes the sentence "The health and dignity of my patient will ever be my first concern.")
      The American Medical Association strongly opposes doctor-assisted suicide, yet surveys show 50 to 60 percent of doctors favor legalizing it. It's an unresolved -- and divisive -- issue among doctors, most of whom went through years of medical training without ever taking a course on death and dying.
      Only now, for example, is Brown's medical school developing a curriculum on the topic. "I don't think anyone is talking about death and dying in a coherent way," says Dr. Fred J. Schiffman, Brown's director of medical education, who is writing the curriculum. "We are poised to do it right -- it's a crime we're not doing it already."
      Doctors learn to treat, to intervene, to strive against disease. But they are not taught what to do when medicine is powerless to heal. Death becomes viewed as a failure. And from there springs the urge to do something more, to try yet one more intervention. The right-to-die movement has fought this impulse for 20 years, pushing for the patient's right to say, "No more."
      "There is nothing selfish or improper about wanting a dignified, controlled death if one is incurably ill and has no other sensible options," writes Dr. Timothy E. Quill, the Rochester, N.Y., internist whose challenge to the New York-state ban on assisted suicide went to the U.S. Supreme Court.
      But Dr. Herbert Hendin, the psychiatrist who heads the American Foundation for Suicide Prevention and one of the most passionate opponents of physician-assisted suicide, argues that doctors' discomfort with death often underlies their support for assisted suicide.
      "By deciding when patients die, by making death a medical decision," he writes in his new book, Seduced by Death, "the physician preserves the illusion of mastery over the disease and the accompanying feelings of helplessness. The physician, not the illness, is responsible for the death."
      Doctors and ethicists on both sides of the issue agree on one point: Care of the dying -- focusing on comfort, rather than cure -- needs to become a valued element of medical practice.
      Where they disagree is whether alleviating suffering should include taking an active role in ending life. Many see no moral distinction between turning off a respirator and giving a patient a prescription for a lethal dose of sleeping pills. In both cases, they argue, a doctor's active intervention results in death. Others say the difference is clear: When you turn off a ventilator, the cause of death is the patient's underlying disease. When a patient ingests enough barbiturates to die, the cause is a drug overdose enabled by a doctor.
      "It's so common that patients express a wish to die, to end it all," says Dr. Edward W. Martin, medical director of Hospice Care of Rhode Island. "After a week, it changes. Bringing Hospice into their life, that changes many of these people."
      Often, says Martin, patients merely need pain relief or counseling, or a sign that someone cares. Legalizing physician-assisted suicide would be too hazardous -- and there's really no need for it, Martin argues.
      But he acknowledges that there are limits to what hospice care can do.
      For a small minority of patients, pain is so severe that the drugs needed to relieve it will also make the patient unconscious. Drugged into oblivion, the patient then starves or dies of dehydration. And there's nothing hospice care can do for the loss of function, the shrinking of experience that illness can bring.
      Indeed, the focus on pain management may be missing the point. According to an oft-cited survey of Washington-state doctors last year, the most common reasons patients give for seeking assisted suicide are emotional: worries about losing control and dignity, becoming a burden or depending on others for personal care.

r. David P. Carter, a Pawtucket family practitioner who supports legalization of physician-assisted suicide, points out that sometimes it is medical treatment itself that brings patients to the point that they want suicide.
      "If we had chosen at the outset not to treat," he says, "they might have died more humanely. They may shake a bony finger at me and say, 'If you had told me it was going to be like this, I wouldn't have taken the treatment. Now I'm in such misery, let's get it over with.'"
      "And I say, 'I can't.'"
      As Quill, the Rochester doctor, writes in his book, Death and Dignity: "Why is it considered ethical to die of 'natural causes' after a long heroic fight against illness filled with 'unnatural' life-prolonging medical interventions, and unethical to allow patients to take charge at the end of a long illness and choose to die painlessly and quickly?"
      As an oncologist, Dr. Rochelle Strenger, of Miriam Hospital, in Providence, often works with patients dying of cancer. But she says none has ever asked her to directly help with suicide. One patient told her he was stockpiling his pain medication and hoped she "would be kind on the death certificate." He never asked her how much he would need to kill himself, and if he had, she says she would not have told him. In the end, the patient chose a natural death.
      Asked whether most dying people merely want the security of knowing there will be a way out if they need it, Strenger says, "No. The vast majority of people want to know that someone will be there for them, that they won't be in pain -- that they won't die alone."
      Dr. Edwin N. Forman, chairman of the Rhode Island Hospital ethics committee, is an oncologist who works with children. He sees them suffer; even in casual conversation the thought of it brings tears to his eyes. And though Forman says he would not violate the law, he believes that the patient's claim on the doctor to relieve suffering is the strongest argument for allowing assisted suicide.
      "You're there to relieve suffering," he says. "You have the means to do it. No one else has it. When there's a call for it, can you say, 'No, I don't do that'?"

lthough the Brown medical school does not have a course on death and dying, a group of students -- one of several such "affinity groups" -- meets regularly to discuss the topic, under the tutelage of Dr. William Sikov, a Miriam Hospital oncologist.
      Asked their thoughts on physician-assisted suicide at a meeting last November, these students already had their minds made up; they seemed to regard it all as rather obvious.
      "Health care involves a lot more than keeping someone alive," said Eli Kramer, a first-year student. "It could be the best thing for them would be to end their life."
      "You're not just there to preserve this thing called life," said Josh Schiffman, another first-year medical student, and son of Fred Schiffman, the Brown medical-education director. "You're there to preserve the patient.
      "In America," he continued, "there's this fear of death. In Eastern civilization, death is embraced as part of life -- it's part of the life cycle. By making [physician-assisted suicide] legal, you're ensuring that their death is a good death. You're going to make sure that this part of the life cycle is good."
      This group of students, said Sikov, the oncologist who leads it, is probably not representative of Brown medical students; these students share an interest in death that in many cases has sprung from personal experience.
      Among the 10 students at this meeting, the verdict was unanimous: Every single one favored the legalization of physician-assisted suicide, and all but two said they would have no qualms filling the role of the physician who assists.
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