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The Elusive "Good Death" for Frail Elders By Mary Kay McKown For many Americans, the notion of "a good death" evokes a vision of dying peacefully at home, in the presence of loved ones. Although the Medicare hospice benefit was created in 1985 to facilitate this possibility for adults over the age of 65, very few people over the age of 80 die at home. As a UCSF-prepared family nurse practitioner, I have worked closely with elders and their families, community case managers, home health and hospice interdisciplinary teams, geriatricians, and hospital-based providers to facilitate "good deaths" for frail elders in their homes, hospitals, and intermediate care facilities. While I am very proud and appreciative of UCSF's leadership in developing a palliative care (PC) program for hospitalized patients, I am concerned that the specialty of hospital-based palliative care may be contributing to the "medicalization" of death. By this I mean that death in old age is increasingly viewed (by patients and providers) primarily as a highly compromised physiological state that needs complex medical management, rather than as an important family event that can be anticipated and skillfully supported outside of the hospital. As a profession, nurses hold unique expertise in end-of-life care. Together with family members, nurses have historically provided the bulk of physical care and supportive presence to dying individuals, whether at home or in a hospital. We assist human beings to cope with expected and unexpected changes in health, from anticipating birth to adapting to a chronic illness, and eventually, to accommodating the inevitability of death. Though we work side by side with physicians to carry out medical treatment plans, the philosophical basis of our profession differs considerably from that of medicine, which is generally oriented to curing disease and symptom relief, when cure is not possible. I am concerned that as a medical model, PC prioritizes the abilities of medicine to diagnose and treat difficult symptoms over the abilities of nursing, social work and chaplaincy to be present with patients in ways that relieve physical, emotional and spiritual distress. The recent establishment of PC as a new American Board of Medical Specialties certification confers high visibility, value and authority to palliative care physicians. This can serve to reinforce hierarchical team structures where many disciplines contribute, but physicians are in charge. Because I am a family nurse practitioner, I think a lot about the similarities between the needs of families who are about to have a baby and families whose frail, elderly parent or grandparent might soon die. And I see notable parallels between the well-established medical specialty of obstetrics and the newly established specialty of palliative care. I am very concerned about the possibility that palliative care as a medical specialty will do to death what the practice of obstetrics has done to birth in this country. The growth of obstetrics as a specialty has resulted in dramatically high rates of medical interventions in birth, as well as marginalization of the practice of midwives. Many people now perceive birth outside of hospital settings to be unsafe, and the practice of midwifery is in danger of disappearing. Likewise, I think that the practice of hospital-based palliative medicine may increase the perception that hospitals are the only place that people can die comfortably. As death is increasingly managed in acute care settings, the practice and skill of caring for the dying at home could become marginalized. Our society places high value on healthy birth, and works to facilitate this possibility by providing prenatal care and education. Death, on the other hand, is held off as long as possible, and then managed as a crisis. When elders die in urban hospitals, they are usually cared for by rotating teams of providers who have limited knowledge of them as persons and very limited time in which to get to know them. In this situation, elders are often treated according to standardized protocols that are highly interventive and impersonal. Hospice care can be highly individualized, but Medicare hospice eligibility guidelines require both that physicians forecast a six-month prognosis and that patients agree to forego further acute intervention for their terminal condition. Therefore, when a frail elder with multiple chronic illnesses does enroll in hospice, it is typically hours to days before death. A "good death" can take place anywhere there is an interdisciplinary team that works collaboratively to relieve symptoms while giving equal importance to honoring the integrity, spirituality, and family of the dying person. Palliative care as a medical specialty brings a valuable perspective to standardized medical care, and is a welcome addition to the array of specialty services available to hospitalized patients. However, when 70% of Americans express a desire to die at home, and yet more than 80% of deaths occur in institutions, I think we need to examine the factors that are contributing to this disparity. As providers of excellent care at both the beginning and end of life, nurses have valuable expertise in palliative care, whether it is delivered at home or in the hospital. We need to be vocal to ensure that the practice of palliative care is truly collaborative, and that the possibility of "a good death" outside of the hospital continues to exist. Mary Kay R. McKown, RN, MS, FNP-C, is a John A. Hartford Pre-Doctoral Scholar in the School of Nursing. | ||
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