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managed death

Doctors, lawyers, kin, and clergy have their say at BC conference

gravestones Of the 67 ethicists, clergy, and health care professionals at Boston College's conference on ethics and the end of life, which took place March 17-18, women accounted for 54, or 80 percent, a fact that brought up some delicate questions. Were male clergy and clinicians, who presumably deal with dying people as often as their female counterparts do, less likely to ponder the ethics of their work? Or, on a pop-psychology level, were women more inclined toward nurturance and men more likely to lapse into denial in the face of death? Or was the discrepancy a mere aberration, an extreme outlier on the bell curve? Asked about all this, conference cochair Rachel Pruchno, director of the University's Initiatives on Aging program, said, "Women tend to be in the disciplines of nursing and social work, and these disciplines tend to be more concerned with end-of-life issues," but she also admitted that, for whatever reason, "women may be more inclined to talk about" death and dying.

However you explained the gender imbalance, it affected the tone of the proceedings, which had a collaborative, harmonious, welcoming feel sometimes lacking at big-time academic meetings. On the literal eve of Gulf War II, male and female speakers alike praised the softer virtues, stating their preference for open emotionality over the stiff upper lip, and for ethics over law as a means to solve end-of-life disputes. Speakers of both genders also called for greater emphasis on "caring" over "curing" with respect to dying patients—that is, for palliative hospice care over heroic, technological medicine.

Though the conference addressed the end of life from a wide range of perspectives—legal, clinical, social, economic—the caring vs. curing controversy managed to find its way into most presentations. Laurel Herbst, a San Diego physician and hospice administrator, started off her presentation with a joke that the reason coffins are nailed shut is "to keep the oncologists from having one more go." Fr. Richard John Neuhaus, a New York City-based author and editor, began the public lecture he gave in conjunction with the conference with the dry observation that, even in the face of vast medical progress, "the mortality rate holds steady at 100 percent." Both Neuhaus and medical ethicist Daniel Callahan of the Hastings Center, a research institute in Westchester County, New York, implied in their remarks that contemporary medicine suffers from a horrible case of hubris. Neuhaus asserted that biotechnology aims at nothing short of immortality for the human species, a prospect he finds "chilling," while Callahan quoted a physician as saying, "Death is nothing but a series of preventable diseases." The problem with that view, said Callahan, is that it blinds the profession to the moment when one last desperate treatment may only waste resources and cause needless suffering for a dying patient.

Professor John Paris, SJ, of BC's theology department, underscored this last point darkly, with the story of his dying sister, whose doctor proposed a last-ditch treatment, saying 5 percent of those who received it had survived one year. Paris said his sister replied, "Tell me about the other 95 percent."

Callahan struck a similar note in an anecdote he offered. A friend of his, a medical ethicist who was dying of pancreatic cancer, agreed against his own better judgment to a last round of chemotherapy that, according to Callahan, "made his dying worse." Callahan asked him, "Why did you do it?" "I don't really know," the friend replied. "They talked me into it."

No speaker at the conference disputed the view that doctors sometimes go too far, but some complained that the caring-curing language presented too rigid a dichotomy. Ethicist David Solomon of the University of Notre Dame's Center for Ethics and Culture maintained that "for most older people, the clearest indication that they're being cared for is that someone's trying to cure them"; Laurel Herbst outlined a model of curing-and-caring in which both are always part of the treatment plan but caring—including pain relief and interventions by chaplains and social workers—becomes more and more important as curing starts to fail. In Herbst's model, caring lasts even beyond the patient's life, in the form of "family bereavement care." As physician Terri Fried, a specialist in geriatric medicine at Yale University's medical school, put it, "The palliative and curative models represent only the extremes of a very long continuum."

The other dichotomy that got aired at length involved law vs. ethics. Nancy Dubler, a lawyer who heads the bioethics division at New York City's Montefiore Medical Center, spoke on the limitations of the law when it comes to providing guidance about end-of-life treatment. Highly touted legal instruments such as advance directives and living wills end up having small effect on the system, Dubler said, because most patients haven't prepared such documents. What is more, the few patients who have planned ahead often end up getting overridden by their relatives once they lapse into legal incompetency, at which point the families demand heroic medical efforts that are not only useless but expensive to the patient and to society. In the resulting disputes between hospital and kin, the family almost always wins because, as Dubler pointed out, "dying patients don't sue; family members do." Dubler went on to cite another legal bind: the restrictive drug laws that make pain relief difficult to get, with the result that, while 95 percent of pain can be managed, 50 percent of patients die in moderate or severe pain. Thus, she said, the burden of humane end-of-life care falls on doctors, and the doctors' sense of ethics. "I would like to see physicians say, 'You may get a few more days [of life from a treatment], but the cost to you will be horrendous. Let us keep you comfortable,'" said Dubler. "Courts and lawyers should be largely irrelevant in these decisions, and medicine should have the guts to say they are ethical decisions . . . . The ethicist's voice, the physician's voice, the nursing voice must be much stronger in the future."

In response to this, nurse/chaplain Emily Chandler of Massachusetts General Hospital wondered aloud whether we would really like what we heard if the physician's voice were stronger. She said, "I can't tell you how many times a doctor comes [to a dying patient] and says, 'There's no more we can do for you' and then 'We're going to turn you over to the social worker.'"

"Yes, physicians are particularly bad about abandonment," echoed physician Laurel Herbst. "They need to be taught pain management, which is the next step in care."

Cardiologist Douglas Miller from St. Louis University's medical school mentioned, as another possible corrective, his experiences running discussion groups in which residents, medical students, and doctors explore "their own spiritual and emotional lives in connection with the culture and demands of medicine." For dying patients, Miller said, the presence of such groups in a hospital results in "more spiritual discussions with their doctors" and "less depression, less death distress." The bottom line, he said, is that "doctors should never say there's no hope. There's hope that at least you can die well."

David Reich

David Reich is a Boston-based writer.

Photo by Gary Wayne Gilbert

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  » Scraps
  » The mensch
  » America, the analyzed
  »  The museum experiment
  »  Body and soul
  »  Phenomenology
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  »  World-wise
  »  Easy riders
  »  Reversible errors
  »  News briefs
  » More on BC's Initiatives on Aging
  » Innovations, an international journal of leaders in end-of-life care
  » The Hastings Center "Hospice Access & Values" project
  » A bibliography on end of life issues from NPR

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