Approaching Death Improving Care at the End of Life (1997) / Chapter Skim
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Appendix E
Appendix E
Pages 363-382
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From page 363... ...
Most of the obstacles are camouflaged, hidden in our common sense assumptions about race, ethnicity, and cultural difference and in unexamined assumptions at the core of current bioethics practice. The goal of this paper is to provide a set of signposts for navigating through this terrain.
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From page 364... ...
regarding research, clinical practice, and teaching about cultural diversity and end-of-life decisionmaking. Although beyond the scope of this brief paper, it is vital to remember that culture is not simply an inconvenient barrier to a rational, scientifically based health care system or a feature of ethnic "others." Deeply embedded cultural values are apparent in the way American medicine has approached the care of the dying, particularly practices that have separated terminal care from mainstream practice, denied the existence of the dying patient, and assumed that death was simply one of many medical problems open to a technological solution (see Callahan, 1993; Muller and Koenig, 1988~.
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From page 365... ...
Culture is often treated as a barrier to providing scientific medical care to diverse patients. Rather than recognizing the centrality of culture, "A barely hidden desire to create a 'shopping list' of cultural characteristics is sometimes discernible: Tamils do this, the Cree do that and Guatemalans do the other, in order to systematize and 'tidy up' culture in the same way as are other epidemiologic variables, such as smoking, age, gender, or fertility rates" (Lock, 1993b; p.
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From page 366... ...
Questions such as "who controls the dying process, what is beneficial treatment for the dying, and how will individuals respond to outcomes data about prognosis? " are being asked within a society that many argue is moving swiftly toward cultural pluralism.
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From page 367... ...
Figure E-1 demonstrates the increase in (legal) immigration to the United States during this century.3 In terms of absolute numbers, total immigration will soon equal that of the first decades of the twentieth century; a wave of immigration that fundamentally transformed American society.
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From page 368... ...
Indeed, the traditional distinction between race and ethnicity is based on the notion that biological diversity is not salient in discussing differences among groups; ethnicity or ethnic identity is defined in terms of cultural variation. This was a major change over nineteenth and early twentieth century conceptions of race (or biological variation)
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From page 369... ...
context because of the significant overlap between categorizations based on race/ethnicity and the economic impoverishment of social class.6 CULTURE AND NEW BIOETHICS PRACTICES SURROUNDING DEATH The timing and manner of death in hospitals and nursing homes are frequently negotiated, dependent on human agency (Siomka, 1992~. Death and decisionmaking surrounding the event of death have been a primary focus of the evolving discipline of bioethics over the past 20 to 25 years (Callahan, 1993~.
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From page 370... ...
Innovations in health care ethics that emphasize advance care planning for death or a patient's "right" to limit or withdraw unwanted therapy appear to presuppose a particular patient. This ideal patient has the following characteristics: (1)
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From page 371... ...
Specific studies of how culturally diverse patients respond to innovations such as advance directives are only beginning to appear.9 Clinical case reports demonstrate the potential for conflict when patients and providers have conflicting expectations (Meleis and Tonsen, 1983; Muller and Desmond, 1992~. Garrett and colleagues have demonstrated that African Americans differ from European Americans in their willingness to complete advance directives and desires about life-sustaining treatment (Garrett et al., 1993~.
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From page 372... ...
Whereas committees were well equipped to deal with cases of clear overtreatment and overuse of resources for a dying patient, the new case consists of a "minority" family demanding further care in the face of health care professionals' definitions of futile treatment. Current end-of-life decisionmaking practices, based on Western concepts that privilege the individual and individual choice, will inevitably run into difficulties in a society that emphasizes difference.
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From page 373... ...
Education: Clinical education about appropriate end-of-life10 care must incorporate means of addressing cultural diversity without stereotyping based on preconceived biases or views of particular ethnic groups. This is a challenge since clinicians will desire simple algorithms to help them reduce the enormous complexity of caring for patients from diverse cultural backgrounds.
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From page 374... ...
In summary, future research, teaching, and practice guidelines should include: a sophisticated understanding of culture and health; careful use of categorizations based on race, ethnicity, and culture; and · attention to the cultural assumptions embedded within clinical bioethics practices and their relevance to diverse patient populations. ADDENDUM Three Case Narratives CASE NARRATIVE: George Yengley (All names are pseudonyms.)
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From page 375... ...
Innovations in health care ethics that emphasize advance care planning for death or a patient's right to limit or withdraw unwanted therapy appear to presuppose a particular patient. This ideal patient has the following characteristics: (1)
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From page 376... ...
In addition to conventional oncological treatments, he is taking traditional Chinese medicine. In contrast to some Chinese patients, Mr.
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This is going to be my drug. This is going to cure me." The comments of Elena Alvarez reflect the tension between her beliefs that no choices existed, and the health care team's demands that she make decisions.
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The situation of Elena Alvarez was complicated by the need for language interpretation. I was able to observe a long and complicated clinical session, involving the patient, the clinical nurse specialist, oncologist, and social worker.
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From page 379... ...
2. This comment is based on my personal experience serving on ethics committees in long-term care facilities in San Francisco, including On Lok Senior Health Services and Laguna Honda Hospital.
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From page 380... ...
1993. "Telling the Truth" about Cancer: The Ambiguity of Prognosis for Culturally Diverse Patients.
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From page 381... ...
1983. Ethical Crises and Cultural Differences.
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From page 382... ...
1989. Cross Cultural Perspectives in Medical EtI7ics.
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