Vulnerable Patients and End-of-Life Decision-Making
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Over several decades, U.S. physicians, medical ethicists, and policy-makers have worked to enhance patient decision-making at the end-of-life. States have passed laws allowing patients to express their preferences through advance directives and to appoint a surrogate to make decisions if they are unable to do so. Both the federal and state governments have provided incentives to encourage patients to complete advance directives and discuss their care preferences with their physicians. Despite these efforts, for a variety of reasons, few people actually complete an advance directive or appoint a health care surrogate. However, real world medical decision-making frequently deviates from the ideal of the empowered patient with capacity exercising her autonomy over what happens to her body. In this paper, we explore how the legal and ethical frameworks that have developed around end-of-life decision-making in the United States may fail in the case of the most vulnerable patients. We argue that it is time to shift the focus from patients to providers and the health care system to achieve the goal of improved end-of-life decision-making, and suggest specific ways toward making this transition.
Abstract
Over several decades, U.S. physicians, medical ethicists, and policy-makers have worked to enhance patient decision-making at the end-of-life. States have passed laws allowing patients to express their preferences through advance directives and to appoint a surrogate to make decisions if they are unable to do so. Both the federal and state governments have provided incentives to encourage patients to complete advance directives and discuss their care preferences with their physicians. Despite these efforts, for a variety of reasons, few people actually complete an advance directive or appoint a health care surrogate. However, real world medical decision-making frequently deviates from the ideal of the empowered patient with capacity exercising her autonomy over what happens to her body. In this paper, we explore how the legal and ethical frameworks that have developed around end-of-life decision-making in the United States may fail in the case of the most vulnerable patients. We argue that it is time to shift the focus from patients to providers and the health care system to achieve the goal of improved end-of-life decision-making, and suggest specific ways toward making this transition.
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