The ethics of advance care planning and end-of-Iife care

It seems like such a good idea: think now about what you would want if you become critically—maybe even mortally—ill or severely handicapped, and let someone know so decisions about your care can be made that reflect your own values. At the very least, designate someone who knows your views to make decisions on your behalf if you become unable to. Yet data show that most people don’t plan in advance for health care decisions that need to be made at the end of their lives. And surrogates who have to make decisions on their behalf often don’t know or are no better at guessing what the patient would want than a stranger.

For several years, there has been a growing movement in many western developed countries to encourage advance planning about the sorts of health care and decisions—especially regarding life-sustaining treatments-- one would want at the end of life if dying or severely disabled and no longer able to talk with physicians and nurses about one’s own health care choices. This movement has arisen out of a contemporary clinical bioethics and sociopolitical worldview that emphasizes the priority of the principle of autonomy and the rights of individuals.

Other ethical principles of non-maleficence and justice, for example, as well as concepts of family and the common good, remain influential and contribute to ethical distress when individual and other values do not align. This presentation will focus on the ethical principles and concepts that underlie justification for advance care planning and three associated problems: (1) whether people who do not engage in advance care planning are culpably “irresponsible”; (2) what responsibilities health care providers have to engage patients in considering in advance what their choices would be regarding end-of-life care; and (3) what ethical values are at stake in conflicts between patients’ advance directives and other views about which end-of-life treatments should be provided or not.