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Rewriting the Final Chapter (continued)

    Although there appears to be broad support for patients' and families' rights to withhold medical treatment, little consensus exists over physician- assisted suicide, which is currently legal only in the state of Oregon. Caplan says adding assisted suicide to the statutes would be dangerous because of dramatic inequities in patients' health coverage and income.
    But Carol Poenisch, daughter of Dr. Jack Kevorkian's 19th assisted-suicide patient, Merian Frederick, is campaigning to legalize the procedure in her home state of Michigan.
    Merian Frederick, an active grandmother who had always led a busy, independent life, was dying of Lou Gehrig's Disease, a gradually debilitating muscular condition. As what began with a droop in one corner of Frederick's smile gradually consumed the remaining muscles of her body -- until she couldn't lift her head off her chest or even swallow an oyster without choking -- Poenisch was ready to accept the challenge of caring for her. That was not the ending, however, that her mother had in mind.
    At first she ignored the hints about suicide, but Poenisch says she finally realized that the only way she could truly show her love was to respect her mother's autonomy. "I felt like we were in a room together. Maybe I was reading with the light on and she was trying to sleep. She was very politely asking me, 'Could we turn the light off?'"
    The week before Frederick went to Dr. Kevorkian's apartment to die, her children gathered at her Michigan home, asking the nurses not to come. It was far from a somber occasion. "She was very happy, contented, and relaxed," Poenisch recalled. "For her, it was like she was waiting for a train. For us, we felt like we were giving her this gift of death."

    Although Kevorkian is the most publicized, he is not the only medical provider to assist in the suicides of critically-ill patients -- a practice, albeit an infrequent one, that has quietly gone on for years, according to some studies. Dr. David Asch, associate professor of general internal medicine at Penn's School of Medicine, published a paper in the New England Journal of Medicine in 1996, revealing that 19 percent of critical-care nurses responding to a survey reported "engaging in some act to hasten a patient's death." Although some nurses attacked the findings, saying they provided a dangerously distorted picture of their profession, Asch defended his research ("Gazetteer," May/June 1996).
    Instead of legalizing physician- assisted suicide, many medical providers argue, resources should be spent on improving care for the dying, counseling, and easing the discomfort of the terminally ill. Says Strumpf, the Penn nursing professor, "I think [assisted suicide] happens because we're not managing and taking care of the rest of the picture better."
    As director of the gerontological nurse practitioner program and the Center for Gerontologic Nursing Science at Penn's School of Nursing, Strumpf is pursuing a grant to help improve end-of-life care in nursing homes. "It's a group of people who are really hidden," she says. "The critical-care units get lots of publicity, but just being old and frail and finally dying in a nursing home doesn't get much attention." Strumpf is proposing to educate staff on better pain control (one of the most neglected problems, according to a study published in the Journal of the American Medical Association in June), communication with families, and the reduction of unnecessary treatments.
    An alternative to traditional hospital or nursing home care is hospice care, which provides palliative, rather than curative, treatment to the dying in a home or home-like setting. The number of hospice patients has doubled since 1993 to nearly half a million today. "Hospice probably ought to expand," Strumpf says. "What is most problematic about hospice is how it's reimbursed [by insurance companies]. It's a very tightly-framed reimbursement: only for people who have been deemed terminally ill, who are no longer receiving treatment, and who have six months or less to live. But what I would like to see is us have a much broader understanding of end-of-life care and the supports that people need."
    Looking ahead to the year 2030, when one out of every five Americans will be over age 65 -- and the health-care system is likely to be even more overburdened -- the issues surrounding end- of-life care are sure to increase in complexity. But Richmond, the nursing professor, hopes that these developments will also be accompanied by a change in attitudes: "I think technology sometimes advances faster than our wisdom in how to apply it," she says. "I have high hopes that eventually we're going to reach this equilibrium, that yes, we have this [medical] technology, but we also have a lot more wisdom under our belt. There will be a larger group of people dying in a given time. But we may come to terms with death and what it means with a larger group of us who are elderly."
    For many families at the bioethics conference, tragedy has been the catalyst for political and social action. The Messingers waged a campaign to oust the overzealous county prosecutor who charged them with their baby's death. Theresa Blake started a resource and counseling center for terminally-ill patients and their families. Another family formed their own hospice. And all of them hope, by simply repeating their stories, to generate a critical mass of support for the rights of families in medical decision-making.
    But ethicists like Caplan argue that empowering patients and families is "not going to do it alone. We've got to make sure we've got people in the right [care] settings. We act as if we can teach doctors to turn switches on and off that will let them be aggressive, then turn them into caring, compassionate palliative care people. I don't know that they can be both.
    "I think it's time for some new creative thinking about what we want to do [about dying]," says Caplan. "We've got to start thinking about ending legal worries [for doctors], extending the hospice model more broadly, coming up with ways to finance long-term care better. We've got to educate the clergy and nurses about how they can help manage the dying better, and we've got to not necessarily send people to ICU, but send people home, or send them to a nursing home. It's going to take a lot of overhauling of our medical system to do."
    "I think what society and what individuals deeply want when they're dying," adds Richmond, "is to know that even when we cannot cure, that we still provide care and that we still alleviate pain and we still treat individuals with tremendous dignity and caring for what they're going through."
    From 20 years of work in critical-care nursing, one memory that remains with Richmond is of a woman who underwent leg amputation. When infection set in and her organs began to fail, it was clear she would not survive. The woman's family decided to discontinue aggressive treatment.
    Although she was a patient in a high-tech intensive-care unit, Richmond says, "we let the family have free run of the place. Her teenage son had also been hospitalized for an accident. So I would go down and talk to him about his mother, and at one point, I rolled his bed up and took him into the unit so he could be with her. Was it sad? Absolutely. She had little children." But in terms of care at the end of life, Richmond says, "I think that's where we want to be."
    Back at the conference, many of the speakers move beyond the legal and medical issues to talk about death in transformative, even transcendent terms. Clergy representing Jewish, Catholic, and Protestant faiths speak about the presence of God at the bedside of the dying. Family members remember cherished moments spent with loved ones who were able to die at home.
    Miles, the Minnesota bioethicist who never misses an opportunity for a conversation with a patient, recalls how he talked one woman through her mother's gradual death as she was taken off life support. Each day when he saw her, he would ask what she was thinking at that moment or explain something she might not understand -- such as how the rhythm of breathing changes in a dying person. During one of their final conversations, she rewarded him with an observation that surpassed any scholarly utterance on the subject: "I am struck by the majesty of death."
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