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Abstract

This paper’s primary focus will be on considering how best to ensure that patients have the tools to make both informed and authentic choices about their care at the end of life. We will argue that truly informed decision making can help to reduce excessive end-of-life care by any measure. Most importantly for dying patients, better informed decisions can help reduce unnecessary suffering and result in care that aligns with their well-considered values and preferences.

In the first part of this paper, we will explain that, by any of these measures, many dying patients are receiving too much therapy and life-prolonging care. We will also briefly discuss the many factors that contribute to this state of affairs: the culture of denial of death, physicians’ professional culture and attitudes toward treatment, physicians’ fear of liability, physician avoidance of discussions about prognosis, and the impact of payment incentives that encourage overutilization of medical technologies.

In the second part of this paper, we will explain that, under the doctrine of informed consent, physicians have an ethical and legal obligation to provide patients with timely and accurate information that will enable patients to make informed decisions about end-of-life care. Yet compliance with informed consent law does not ensure that patients’ decisions are truly informed and, in practice, the norm is still to provide too much care. In the third part of the paper, we discuss several tools and techniques that are available to help physicians and patients achieve the goal of truly informed decision making, including training to promote the practice of shared decision making and the use of decision aids.

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