Decisions at the End of Life: Cultural Considerations beyond Medical Ethics
Hallenbeck, James, Goldstein, Mary K., Generations
In multicultural America, members of most ethnic groups manage to live lives of peaceful coexistence. Day-to-day encounters with members of other groups often center on relatively superficial concerns. However, as elders approach the end of their lives, they are more likely to become dependent on people of backgrounds different from their own, and where disagreements arise, a variety of constraints may prevent elders from returning to the more familiar territory of their particular subcultures. Elders depend on the technical expertise of the healthcare system. Adequate support may not exist within their own subculture, and economic constraints may force them to receive care within institutions whose values they do not necessarily share. In fact, disagreements between elders and healthcare workers often relate to deeply held beliefs and values. Decisions related to end-of-life care often must address valueladen questions such as the following: Who decides what medical care is appropriate if the patient is unable to do so? Is tube feeding routine nourishment or a medical intervention?
And even, When is a person dead or alive?
(WESTERN) MEDICAL ETHICS
In considering such questions, those of us working in healthcare have often turned to the field of medical ethics, which provides a philosophical framework for examining issues. Beyond this, it can be argued that in the United States, medical ethics has given rise to its own subculture, consisting of ethicists, ethics committees, policies and position papers, and even laws promulgated by ethicists. Medical ethics has created its own movement and, undoubtedly, much good has arisen from it. However, it is the product of Western, largely Northern European, cultural influences (Marshall, 1992; Koenig, I997), and as such, is unavoidably bound to the perspectives of that culture. While this observation does not nullify the value of (Western) medical ethics in addressing problems, it does suggest that the effectiveness of such ethics may be limited in the face of issues that are closely linked to different cultural perspectives.
Let us consider a case in point: making decisions by use of an advance directive. The problem of how to make difficult medical decisions for a patient who lacks decisional capacity is a vexing one. Use of an advance directive attempts to honor an incapacitated person's wishes and values as expressed when that person was able to think and communicate dearly. Advance directives vary in format but usually address two issues: who decides, when the individual is no longer able to do so, and what should be decided, based on that individual's previously expressed preferences. Advance-directive decision making stresses two principles: autonomy and surrogate decision making. The importance given to autonomy reflects the great value ascribed to self-determination and individualism in Western society. Autonomy as it relates to a patient who lacks the ability to think clearly and is dependent on others is an interesting concept. One could reasonably ask, What does it mean to be autonomous if one is in a coma and highly dependent on others? Medical ethics answers with the principle of substituted judgment. Substituted judgment means that another person, either the next of kin or someone else duly appointed becomes the surroage decision maker and is asked to make a particular medical decision for a patient who is currently unable to do so-acting as if he or she were the patient when that person was able to think clearly. The surrogate decision maker is thus asked to represent the autonomous wishes of the previously clearthinking patient.
Yet while such tools as advance directives may be widely accepted in the medical profession-and certainly among medical ethiciststheir usefulness is limited by the extent to which patients share the values on which they are based. Certainly not every culture places great importance on individualism and self-determination-or autonomy. In the case of advance directives, few Americans in the seventies and eighties had completed formal advance directives, and despite encouragement from medical ethicists, healthcare organizations were slow to embrace the concept (Roe et al., 1992; Goldstein et al., 1991).
Current estimates are that approximately 20 percent of the adult population has executed an advance directive (Hanson and Rodgman, I996; La Puma, Orentlicher, and Moss, 1991; Hofmann et al., I997), and where successfully completed, studies have demons, they are often not acknowledged or used. Morrison et al. (I995) found that only 26 percent of geriatric patients who had executed an advance directive had that directive recognized during a subsequent hospitalization. The SUPPORT study documented minimal utilization and impact of advance directives in acute inpatient hospital settings (Teno et al., I997).
Various theories have been advanced as to why advance directives have been underutilized. For example, some argue that underutilization reflects a "death denying" society. Others are quick to blame physicians for being overly paternalistic. Increasingly, researchers are appreciating the importance of other factors, such as ethnicity and socioeconomic status. Supporting evidence is found in studies showing that advance directives are more likely to be used by affluent, well-educated Caucasians than by other groups (Hanson and Rodgman, I996; Sachs, I994).
Pearlman (I994) points to several deeper issues that must be addressed if underlying problems are to be successfully resolved. What values do patients, families, and clinicians embrace? What system problems exist that thwart successful problem solving, and how do we communicate with each other about such difficult issues?
ONE CASE, DIFFERENT VALUES
Let us consider a hypothetical, but common situation. We have highlighted the terms that refer to Western ethical principles.
A frail, chronically ill elderly man has been admitted to the intensive care unit (ICU) with a serious case of pneumonia. In an attempt to save his life, the staff provide very aggressive care, including ventilator support. However, after several days it becomes apparent to the ICU team that the patient is not likely to survive. The team thinks it would be best to discontinue life-support and provide care that maximizes comfort. They approach the patients wife with this proposal. The physician argues for discontinuation of life-support, stressing the futility of further aggressive care. The physician tells the wife that on the ventilator the patient has a poor quality of life and that even ifa brief re were possible, his future quality of life would also be poor, so thee it would be better at this stage to focus on the patients comfort.
Here the physician is arguing ag from the ethical perspectives of beneficence (to maximize the good) and nonmaleficence (to not cause harm). The Icu team most likely views an ICU bed as a precious resource and believes that others might drive greater benefit from the care offered. Looming in the background is concern for the great expense of such care, most of which will be paid for by a third partyMedicare or some other form of insurance. Csu regarding utilization of limited resources reflect the ethical value of justice.
Ideally, the physician would discuss these concerns with the patient, out of concern for the patient's autonomy. However as the patient is unable to represent his own interests, the physician must discuss all this with the patient's wife, the surrogate decision maker. The wife listens politely and smiles, saying, "Thank you so much, doctor I want you to do everything for him." Frustrated with this response, the physician announces that she plans to ask the hospital ethics committee to assist in resolution. "She's in denial," the physician may say, referring to the stages of coming to grips with a terminal diagnosis described by Kubler-Ross (1969).
It may indeed be true that the wife is having difficulty hearing the message that her husband is dying. However, other possibilities, often not considered, also exist. For example, language barriers or hearing impairment may hinder communication. And even when these barriers are not present, serious miscommunication may occur because of differing value systems. In the above story we see the Western ethical principles underlying the physician's argument for discontinuation of life-support and institution of comfort care. What about the underlying values of the wife (and the patient)? Too often physicians and ethics committees fail to consider the possibility of very different value systems being at work.
Following is an illustration of two alternative value systems that could be applied to the case described. While these systems are likely to be more prevalent in certain ethnic groups, great diversity of course exists within groups, and our goal is not to stereotype any group. Rather, we wish to highlight common value systems that differ radically from the values underlying Western medical ethics.
In the case above, the wife may not share the value that futile treatments should not be applied. For her, even referring to the treatments as futile may represent a lack of faith in divine intervention. Such a dire situation as her husband's condition may represent a test of faith. After all, life has always had its share of suffering, and miracles can always happen. While she undoubtedly shares the physician's desire to avoid discomfort for her husband, she may not see this as a compelling reason to discontinue life-support. There is more to life than seeking pleasure or avoiding pain. What the physician might view as an issue of justice, she might see as discrimination. Who are these people to suggest that her husband's life is worth less than someone else's? She does not understand what they mean about "deciding as if she were her husband" Obviously, she is not him, and she is not ready to say good-bye. Besides, it is not good to speak of such things. What is most important is to place one's faith in the Lord.
Another wife might also have trouble relating to the values espoused by the physician, but for very different reasons. For this woman what is most important is to fulfill her obligation as a good wife. This value system, which can be called role obligation, stresses that the greatest good will occur if one is true to one's role. Abstract balancing of ethical principles, as in Western ethics, is quite foreign. In this case, the wife may understand perfectly well that the situation is futile, and be very accepting of the likelihood of her husband's death, but this fact is unimportant relative to how she should act as a good wife. She too does not want her husband to suffer, but she accepts suffering as an unavoidable part of the cycle of birth and death. What is most important for her is carrying out the role of a good wife. A good wife always asks that everything be done for her husband. When hospital staff ask what she would decide for herself if she were in her husband's place, she responds without hesitation, "I would want you to remove the life-support" Why? "Because a good wife shouldn't be a burden to her family" As can be seen in this response, the value system of role obligation allows very different decisions to be made, depending upon the perspective and role of the person concerned. Such a system easily comes into conflict with one that stresses surrogate decision making.
These case examples illustrate that verv different value systems may be at work, but they frequently go unrecognized. These value systems are usually internally consistent; they make sense if considered in context. For example, it makes little sense from the perspective of Westem ethics that a wife might want something very different for herself as compared to what she wants for her husband. From the perspective of role obligation, however, this difference makes perfect sense. Similarly, a "test of faith" may appear to be an inability to accept reality, but from another perspective, it may be a heroic religious act.
So what is the problem here? It is not that one value system is right, and another is wrong. It is that people with differing backgrounds and values are thrown into a situation in which the proper course of action is debated and from which neither side can easily withdraw. In the above scenario, the physician and hospital cannot easily tell the wife to seek care elsewhere. Nor can the wife readily find a different intensive care unit to provide care as she sees fit. In short, the parties have little choice but to deal with each other.
EXAMPLES OF CULTURAL DIFFERENCES
The following are examples of cultural differences that may influence an individual's attitudes toward and choices about healthcare. It is important that we not use information about preferences by ethnic or racial group to anticipate the preferences of any individual. Instead, we can use such information to broaden our own perspectives-for example, to consider asking a patient, from any ethnic group, how he would like his family to be involved in discussions.
Blackhall and colleagues (1995) asked elderly individuals from four different ethnic groups about their attitudes toward disclosure of the diagnosis of metastatic cancer and toward endof-life decision making. Korean Americans and Mexican Americans had a more family-centered model of decision making than European Americans and African Americans. Korean Americans and Mexican Americans were less likely to believe that a patient should be told the diagnosis and to believe that the patient should make decisions about the use of life-supporting technology, and more likely to believe that the family should make decisions about the use of life support. Ethnicity appeared to be the primary factor related to attitudes toward truth telling and patient decision making.
Several studies examining differences by race in patient preferences for end-of-life treatments report that African-American patients tend to request more life-sustaining treatments than their white counterparts. African-American patients also tend to view physician-assisted suicide more negatively and to place a higher value on longevity than do white patients (Garrett et al., 1993; Caralis et al., 1993; Caralis and Hammond, 1992; Mouton, Johnson, and Cole, 1995). Recently, Mebane and colleagues (in press) have found that physicians and patients share the same patterns of preference by race, with African-American physicians being more likely than white physicians to request aggressive treatments for themselves in hypothetical scenarios. The reasons that African Americans request more treatments are not clear. Race is a socially constructed variable that may be a surrogate marker for any of a number of different factors. The finding that physicians and patients have similar patterns of preference by race suggests that the differences between races are not due to socioeconomic factors. African Americans tend to characterize themselves as having stronger religious preferences than do whites (Kalish and Reynolds, I976). Mouton, Johnson, and Cole (I995), among many others, have described the historic backdrop of oppression that has been experienced by many older African Americans. It may be that suffering is an expected part of life, rather than a reason to terminate life, for many older African Americans.
Japanese physicians do not customarily withhold or withdraw life-sustaining treatments (Asai et al., I997). Japanese physicians practicing in Japan are more likely than their Japanese-American counterparts to recommend aggressive treatments, including cardiopulmonary resuscitation, for terminally ill patients (Asai, Fukuhara, and Lo, 1995). Patient or family requests for aggressive treatment may be reflecting expectations developed in a different cultural context.
Healthcare workers need to become culturally competent (e.g., Chrisman and Schultz, I997; Koenig, I997). They must develop an appreciation for common differences among ethnic groups. As we have seen, such differences, particularly as they relate to end-of-life care and death rituals, often result in significant misunderstandings (Hallenbeck, Goldstein, and Mebane, I996). Fortunately, a variety of excellent reference works have become recently available to assist in this chore (e.g., Lipton, Dibble, and Minarik, 1996; Irish, Lundquist, and Nelsen, I993). Physicians and other healthcare workers raised in the United States, trained in Western medical ethics conventions, and practicing under U.S. law must reconcile their personal beliefs and obligations with those of their patients, who, as we have seen, may not share those beliefs and values.
Kleinman, Eisenberg, and Good (I978) introduced the notion of the explanatory model as a way of understanding how others view and relate to health and illness and improving communication with patients and families in a crossculture context. Kleinman suggests that we ask several questions. What is thought to be the cause of the illness? What is its natural course, if untreated? What is proper therapy, and what is the proper relationship of those involved with the illness (such as patient, family, and physician)? Such questions help to explain the cultural context of an episode of illness. This explanatory model is an example of a method that can be helpful both in understanding others and one's own viewpoint, through self-reflection. Unfortunately, at present, teaching of communication skills in general does not occupy a significant portion of the curriculum for physicians or other healthcare workers. Even rarer are efforts specifically designed to promote cultural competence. While development of better communication skills and cultural competence is critical to address difficult decisions at the end of life, many problems will persist despite understanding: one can understand another's viewpoint and yet still disagree with it. What is needed is negotiation. Respect is central to the concept of negotiation. Implied is a recognition that there may not be one correct decision to be made. Also implied is a commitment to problem resolution through peaceful means and not through coercion.
Another example is that proposed by Jonsen, Siegler, and Winslade (I982), a method for consideration of ethical decisions modeled on the clinical case presentation familiar to medical students, residents, and physicians. In this model, information is assembled and presented for analysis in four general categories: (1) indications for medical intervention; (2) patient preferences; (3) quality of life; (4) and external factors (the latter category re-named "contextual features" in more recent work [Jonsen, Siegler, and Winslade, I998]). The patient preferences category can incorporate preferences, for example, for decision making by a family member, or for a basis for decision making other than substituted judgment. The contextual features category can accommodate the cultural context.
All of us, regardless of our ethnic backgrounds or professions, are likely to become dependent on the healthcare system to some degree as we age. We cannot escape. Just as healthcare workers must continue to improve communication and negotiation skills and strive to provide care in an ethical context, so must individuals in society consider how they will personally deal with a healthcare system that may hold values different from their own. We are all struggling to enable our elders, and eventually ourselves, to be treated at the end of life in a manner that reflects respect and tolerance of diversity. Our hope is that through improved communication, mutual understanding, and negotiation we will make some progress toward this goal.
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James Hallenbeck, M.D., is clinical associate professor of medicine, Stanford University, and medical director, vA Palo Alto Health Care System Hospice, Palo Alto, Calif, and Mary K. Goldstein,
M.D., is health services research and development associate, VA Palo Alto Health Care System, and assistant professor of medicine, Stanford University, Stanford, Calif.
James Hallenbeck's work is supported by VA Palo Alto. Mary K Goldstein's work is supported by a Career Development Award from vA Health Services Research and Development.…
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Publication information: Article title: Decisions at the End of Life: Cultural Considerations beyond Medical Ethics. Contributors: Hallenbeck, James - Author, Goldstein, Mary K. - Author. Journal title: Generations. Volume: 23. Issue: 1 Publication date: Spring 1999. Page number: 24+. © 2099 American Society of Aging. Provided by ProQuest LLC. All Rights Reserved.
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