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Jstor is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content. The key to resolving such a cross-cultural disagreement was in avoiding hasty assumptions about what the culture or the family believes. When deliberating with a patient or surrogate about end-of-life decisions, physicians and ethics consultants must recognize that each patient and family is unique.
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The Hastings Center Report Human Rights Not enough 1998.pdf
Jstor is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content. The key to resolving such a cross-cultural disagreement was in avoiding hasty assumptions about what the culture or the family believes. When deliberating with a patient or surrogate about end-of-life decisions, physicians and ethics consultants must recognize that each patient and family is unique.
Jstor is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content. The key to resolving such a cross-cultural disagreement was in avoiding hasty assumptions about what the culture or the family believes. When deliberating with a patient or surrogate about end-of-life decisions, physicians and ethics consultants must recognize that each patient and family is unique.
Source: The Hastings Center Report, Vol. 28, No. 1 (Jan. - Feb., 1998), p. 6 Published by: The Hastings Center Stable URL: http://www.jstor.org/stable/3527966 . Accessed: 23/10/2014 20:28 Your use of the JSTOR archive indicates your acceptance of the Terms & Conditions of Use, available at . http://www.jstor.org/page/info/about/policies/terms.jsp . JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact support@jstor.org. . The Hastings Center is collaborating with JSTOR to digitize, preserve and extend access to The Hastings Center Report. http://www.jstor.org This content downloaded from 163.178.101.228 on Thu, 23 Oct 2014 20:28:41 PM All use subject to JSTOR Terms and Conditions The doctor might have asked an experi- enced, sensitive African-American on staff to talk with the family. The key to resolving such a cross-cultural disagreement was in avoiding hasty assumptions about what the culture or the family believes. If the family mistrusted the medical system, the doctors might have negotiated in one way. If the family believed in God's underlying partici- pation in human events, the doctors might have negotiated in another way. In either case, the doctors were not obligated to give costly, futile, and potentially harmful treat- ment just because they believed a culture or a family demanded it. Henry S. Perkins Helen P. Hazuda The University of Texas Health Science Center at San Antonio Eric L. Krakauer replies: Each of the respondents makes a similar point with which I quite agree. When delib- erating with a patient or surrogate about end-of-life decisions, physicians and ethics consultants must recognize that each patient and family is unique. Surrogates are often motivated by guilt, denial, inability to ac- cept death, misunderstanding, or religious conviction to insist on aggressive life-sup- port measures in spite of their apparent "futility." Yet the variety of possible reasons for this insistence is infinite, and hasty as- sumptions indeed must be avoided. My point in writing this case study and commentary was to call attention to an ad- ditional factor that may complicate these deliberations and produce conflict over questions of life support and futility. This factor, largely ignored by the bioethics liter- ature, is racism. It is well-recognized that cultural difference can contribute to such conflict. In the United States, institutional- ized racism has helped generate a cultural difference between working-class African Americans and upper middle-class physi- cians, who tend disproportionately to be European-American. I believe that, because of this background of racism, many minori- ty patients and families may mistrust their physicians and the health care system and that this mistrust may complicate end-of- life decisionmaking more frequently than has been recognized. Multiple studies have shown that African Americans tend to be less interested in ad- vance directives and more interested in ag- gressive life support than European Ameri- cans. It has been hypothesized that mistrust may be a major reason for this, and at least one qualitative study has borne out this hy- pothesis. Thus far, few studies have used standard psychometric survey methods to The doctor might have asked an experi- enced, sensitive African-American on staff to talk with the family. The key to resolving such a cross-cultural disagreement was in avoiding hasty assumptions about what the culture or the family believes. If the family mistrusted the medical system, the doctors might have negotiated in one way. If the family believed in God's underlying partici- pation in human events, the doctors might have negotiated in another way. In either case, the doctors were not obligated to give costly, futile, and potentially harmful treat- ment just because they believed a culture or a family demanded it. Henry S. Perkins Helen P. Hazuda The University of Texas Health Science Center at San Antonio Eric L. Krakauer replies: Each of the respondents makes a similar point with which I quite agree. When delib- erating with a patient or surrogate about end-of-life decisions, physicians and ethics consultants must recognize that each patient and family is unique. Surrogates are often motivated by guilt, denial, inability to ac- cept death, misunderstanding, or religious conviction to insist on aggressive life-sup- port measures in spite of their apparent "futility." Yet the variety of possible reasons for this insistence is infinite, and hasty as- sumptions indeed must be avoided. My point in writing this case study and commentary was to call attention to an ad- ditional factor that may complicate these deliberations and produce conflict over questions of life support and futility. This factor, largely ignored by the bioethics liter- ature, is racism. It is well-recognized that cultural difference can contribute to such conflict. In the United States, institutional- ized racism has helped generate a cultural difference between working-class African Americans and upper middle-class physi- cians, who tend disproportionately to be European-American. I believe that, because of this background of racism, many minori- ty patients and families may mistrust their physicians and the health care system and that this mistrust may complicate end-of- life decisionmaking more frequently than has been recognized. Multiple studies have shown that African Americans tend to be less interested in ad- vance directives and more interested in ag- gressive life support than European Ameri- cans. It has been hypothesized that mistrust may be a major reason for this, and at least one qualitative study has borne out this hy- pothesis. Thus far, few studies have used standard psychometric survey methods to investigate mistrust among terminally ill pa- tients or their surrogates. The available data investigate mistrust among terminally ill pa- tients or their surrogates. The available data does not show differences in trust between cultural groups. It has been suggested, how- ever, that patients and surrogates may have compelling reasons to conceal mistrust and that standard survey techniques may not be well suited to studying this highly sensitive phenomenon. Given the history of medical racism and current evidence of unequal access to health care resources, mistrust of physicians and of the health care system on the part of African-American and other minority pa- tients is understandable. Medicine has not yet proven itself entirely trustworthy. In the current political climate, mistrust is likely to grow. As affirmative action programs are dis- mantled, minority medical school admis- sions drop, and fewer international medical graduates find positions, American medi- cine is becoming less representative of the nation's increasingly diverse ethnic make-up. Meanwhile, as the ranks of the uninsured and underinsured continue to swell, com- mercial interests exert ever greater control over health care, intrude into the patient- doctor relationship, and pressure physicians to diminish allegiance to their patients. Trust is a necessary condition for medical care, especially at the end of life. The very possibility that past and present racisms may compromise it should prompt careful attention to this matter from the medical, bioethics, and health services research com- munities. Human Rights, Not Enough Madam: I appreciate the contrast that Jonathan Mann draws between medicine and public health ("Medicine and Public Health, Ethics and Human Rights," HCR, May-June 1997). I also appreciate the em- phasis he places on the societal aspect and determinants of health. But there are two points in his article that I cannot accept. First of all, I cannot accept the contrast that Dr. Mann draws between the discourse of ethics and the discourse of human rights. He claims that the discourse of ethics is in- dividually oriented, whereas the discourse of human rights is socially oriented. It's fair to say that much of the early writing in med- ical ethics focused on problems in acute care, emphasized individual autonomy, and tended to neglect social aspects and con- texts. But I would not say the same about ethics in general nor about medical ethics in the last ten years. Discussions in ethics and medical ethics include a wide range of voic- es and orientations. There are Aristotelians, Hegelians, communitarians, civic republi- cans, pragmatists, feminists, narrative bio- ethicists, and others. All these writers tend does not show differences in trust between cultural groups. It has been suggested, how- ever, that patients and surrogates may have compelling reasons to conceal mistrust and that standard survey techniques may not be well suited to studying this highly sensitive phenomenon. Given the history of medical racism and current evidence of unequal access to health care resources, mistrust of physicians and of the health care system on the part of African-American and other minority pa- tients is understandable. Medicine has not yet proven itself entirely trustworthy. In the current political climate, mistrust is likely to grow. As affirmative action programs are dis- mantled, minority medical school admis- sions drop, and fewer international medical graduates find positions, American medi- cine is becoming less representative of the nation's increasingly diverse ethnic make-up. Meanwhile, as the ranks of the uninsured and underinsured continue to swell, com- mercial interests exert ever greater control over health care, intrude into the patient- doctor relationship, and pressure physicians to diminish allegiance to their patients. Trust is a necessary condition for medical care, especially at the end of life. The very possibility that past and present racisms may compromise it should prompt careful attention to this matter from the medical, bioethics, and health services research com- munities. Human Rights, Not Enough Madam: I appreciate the contrast that Jonathan Mann draws between medicine and public health ("Medicine and Public Health, Ethics and Human Rights," HCR, May-June 1997). I also appreciate the em- phasis he places on the societal aspect and determinants of health. But there are two points in his article that I cannot accept. First of all, I cannot accept the contrast that Dr. Mann draws between the discourse of ethics and the discourse of human rights. He claims that the discourse of ethics is in- dividually oriented, whereas the discourse of human rights is socially oriented. It's fair to say that much of the early writing in med- ical ethics focused on problems in acute care, emphasized individual autonomy, and tended to neglect social aspects and con- texts. But I would not say the same about ethics in general nor about medical ethics in the last ten years. Discussions in ethics and medical ethics include a wide range of voic- es and orientations. There are Aristotelians, Hegelians, communitarians, civic republi- cans, pragmatists, feminists, narrative bio- ethicists, and others. All these writers tend to emphasize the social nature of our being to emphasize the social nature of our being and well-being. Indeed, in different ways they attempt to overcome the individualis- tic orientation that is implicit in both much of the early work in medical ethics and in the discourse of human rights. The second point that I cannot accept concerns the adequacy of the discourse of human rights. Although this discourse may prove useful for certain purposes and prob- lems, I doubt that it will prove to be an ad- equate discourse for public health. It simply leaves out too many important concerns and considerations. It does not provide an adequate account of distributive justice, nor a deep account of community. It does not provide an adequate account of the ethical meaning of relationships, the role of moral imagination, and the work of caring (which is more than respecting rights). And by it- self, it does not provide an account of the virtues, institutions, and modes of reasoning that we need to resolve conflicts of rights. So, although I appreciate Dr. Mann's search for an ethics that will prove most useful for people who work in the field of public health, I think it would be a mistake to adopt uncritically the discourse of hu- man rights. I would suggest that people in public health listen to the diverse voices within ethics. James Dwyer New York University and well-being. Indeed, in different ways they attempt to overcome the individualis- tic orientation that is implicit in both much of the early work in medical ethics and in the discourse of human rights. The second point that I cannot accept concerns the adequacy of the discourse of human rights. Although this discourse may prove useful for certain purposes and prob- lems, I doubt that it will prove to be an ad- equate discourse for public health. It simply leaves out too many important concerns and considerations. It does not provide an adequate account of distributive justice, nor a deep account of community. It does not provide an adequate account of the ethical meaning of relationships, the role of moral imagination, and the work of caring (which is more than respecting rights). And by it- self, it does not provide an account of the virtues, institutions, and modes of reasoning that we need to resolve conflicts of rights. So, although I appreciate Dr. Mann's search for an ethics that will prove most useful for people who work in the field of public health, I think it would be a mistake to adopt uncritically the discourse of hu- man rights. I would suggest that people in public health listen to the diverse voices within ethics. James Dwyer New York University Jonathan M. Mann replies: Naturally, any effort to distinguish- ethics and human rights in this case-will likely overemphasize differences, so the as- sociative corrective proposed by Dwyer is appreciated. Similarly, no uncritical adop- tion of the viewpoint of human rights is proposed; public health does not suffer from a diversity deficiency. However, from the perspective of public health practice, human rights offers a path- way forward for analysis and action in the realm of societal determinants of health, as has been illustrated by the Cairo Conference on Population and Development, as well as by Amartya Sen's observations on the pro- tection human rights offers against famine. Further, I am not proposing that human rights is an ethics for public health. Rather, human rights offers an approach to identify- ing and responding to the mission of public health (to ensure the conditions in which people can be healthy), thereby providing public health with sufficient clarity regard- ing its roles and responsibilities to allow development of an ethics of public health. Finally, a curiosity: I have never met a human rights advocate who questioned the value or contribution of ethics, yet I have met many philosophers and ethicists who question the value or contribution of hu- man rights, and I have always wondered why. Jonathan M. Mann replies: Naturally, any effort to distinguish- ethics and human rights in this case-will likely overemphasize differences, so the as- sociative corrective proposed by Dwyer is appreciated. Similarly, no uncritical adop- tion of the viewpoint of human rights is proposed; public health does not suffer from a diversity deficiency. However, from the perspective of public health practice, human rights offers a path- way forward for analysis and action in the realm of societal determinants of health, as has been illustrated by the Cairo Conference on Population and Development, as well as by Amartya Sen's observations on the pro- tection human rights offers against famine. Further, I am not proposing that human rights is an ethics for public health. Rather, human rights offers an approach to identify- ing and responding to the mission of public health (to ensure the conditions in which people can be healthy), thereby providing public health with sufficient clarity regard- ing its roles and responsibilities to allow development of an ethics of public health. Finally, a curiosity: I have never met a human rights advocate who questioned the value or contribution of ethics, yet I have met many philosophers and ethicists who question the value or contribution of hu- man rights, and I have always wondered why. 6 HASTINGS CENTER REPORT 6 HASTINGS CENTER REPORT January-February 1998 January-February 1998 This content downloaded from 163.178.101.228 on Thu, 23 Oct 2014 20:28:41 PM All use subject to JSTOR Terms and Conditions