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. …