“It’s Like Playing With Your Destiny”: Bosnian Immigrants’ Views of Advance Directives and End-of-Life Decision-Making
Tóm tắt
Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician–patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents’ personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.
Tài liệu tham khảo
U.S. Department of Commerce-2000 Census of the Population: General Population Characteristics, United States. Washington, DC: Government Printing Office; 2001
Pietsch JH, Braun, KL: Autonomy, advance directives, and the patient self-determination act. In: Braun KL, Pietsch JH, Blanchette PI, eds. Cultural Issues in End-of-Life Decision Making, pp. 37–54. Thousand Oaks, CA: Sage; 2000
Carrese JA, Rhodes LA: Western bioethics on the Navajo reservation: Benefit or harm? JAMA 1995; 274:826–829
Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S: Ethnicity and attitudes toward patient autonomy. JAMA 1995; 274:820–825
Beauchamp TL, Childress JF: Principles of Biomedical Ethics, 4th edn. New York: Oxford; 1994
Searight HR: Family-of-Origin Therapy and Diversity. Washington, DC: Taylor & Francis; 1997
Wolf S: Sources of concern about the Patient Self-Determination Act. New Engl J Med 1991; 325:1666–1671
Erock M, Kagawa-Singer M, Barnes D, Blackhall L, Koenig B: Multicultural considerations in the use of advance directives. Oncol Nurs Forum 1998; 25:1683–1690
Oken D: What to tell cancer patients. JAMA 1961; 175:86–94
Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM: Changes in physicians’ attitudes toward telling the cancer patient. J Am Med Assoc 1979; 241:897–900
Lee E: Asian-American families: An overview. In McGoldrick M, Giordano J, Pearce JK, eds. Ethnicity and Family Therapy, pp. 227–248. New York: Guilford; 1996
Frank G, Blackhall LJ, Michel V, Murphy ST, Azen SP, Park K: A discourse of relationships in bioethics: Patient autonomy and end-of-life decision making among elderly Korean-Americans. Med Anthropol Q 1998; 12:403–423
Kornai J, Eggleston K: Welfare, Choice and Solidarity in Transition: Reforming the Health Sector in Eastern Europe. Cambridge, UK: Cambridge University Press; 2001
Searight HR: Bosnian immigrants’ perceptions of the United States health care system: A qualitative interview study. J Immigrant Health 2003; 5:87–93
Morgan DL: Focus Groups as Qualitative Research. Newbury Park, CA: Sage; 1988
Searight HR, Campbell DC: Ethnography and family medicine: Issues and overview. Fam Pract Res J 1992: 12:369–382
Elder NC, Schreider FD, Zweig SC, Peters PG, Ely JW: Community attitudes and knowledge about advance care directives. J Am Board Fam Pract 1992; L5:565–572
Morgan DL: Designing focus group research. In: Stewart M, Tudiver F, Bass M, Dunn E, Norton PG eds. Tools for Primary Care Research, pp. 177–193. Newbury Park, CA: Sage; 1992
Morgan DL, Spanish MT: Social interaction and the cognitive organization of health-relevant behavior. Soc Health Illness 1985; 7:401–422
McCracken GD: The long interview. Newbury Park, CA: Sage; 1988
Strauss A, Corbin J: Basics of Qualitative Research. Newbury Park, CA: Sage; 1990
Rennie DL, Phillips JR, Quartoro JK: Grounded theory: A promising approach to conceptualization in psychology. Can Psychol 1988; 29:139–150
Searight HR, Barbarash RA: Informed consent: Clinical and legal issues in family practice. Fam Med 1994; 26:244–249
Hardwig J: What about the family? Hastings Center Rep 1990; 20:5–10
Hardwig J: Is there a duty to die? Hastings Center Rep 1997; 27:34–42
Contardropoulus A, Laurissin M, Leibovich E: Values, norms and the reform of health care systems. In: Saltman RB, Figueras J, Sakellarides C, eds. Critical Challenges for Health Care Reform in Europe, pp. 339–362. Buckingham UK: Open University Press; 2000
Moazam F: Families, patients, and physicians in medical decision-making: A Pakistani perspective. Hastings Center Rep 2000; 30:28–37
Braun KL, Pietch JH, Blanchette PL: An introduction to culture and its influence on end-of-life decision making. In: Braun KL, Pietsch JH, Blanchette PL, eds. Cultural Issues in End-of-Life Decision Making. Newbury Park, CA: Sage; 2000
Searight HR: Assessing patient competence for medical decision-making. Am Fam Phys 1992; 45:751–759
Appelbaum PS, Lidz CW, Meisel A: Informed Consent: Legal Theory and Clinical Practice. New York: Oxford University Press; 1987
Candib L: Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Fam Syst Health 2002; 20:213–228
Searight HR, Hubbard SL: Evaluating patient capacity for medical decision-making; Individual and interpersonal dimensions. Fam Syst Health 1998; 16:47–54
