On the Scope and Limits of Advance Directives and Prospective Autonomy
In the US, most patients near the end of life die after a decision is taken to withhold or withdraw life-sustaining interventions. The ethical-legal consensus holds that families and healthcare providers called upon to decide on behalf of patients who lack capacity to speak for themselves should seek to determine what patients would choose for themselves and should also act in the patient’s best interests. Grounded in the ethical principle of prospective autonomy, law across the US recognizes the right of competent adults to write advance directives to direct and control healthcare decisions near the end of life, at a time of future decisional incapacity. This chapter discusses key features of advance directives and their scope and limits from both ethical and legal perspectives. Case examples are used to examine common ethical-legal challenges for honouring directives—in particular, dilemmas where it is reasonable to ask, “Although it’s ethical, is it legal?” My primary focus is the healthcare proxy, the preferred and most widely used form of advance directive in the US. Whether advance directives should be understood as binding documents is also considered. I argue that proxy directives should be considered prima facie binding, and that only in the case of the rebel proxy who fails to meet their fiduciary duty to the patient is there good and compelling ethical justification to override patient wishes and proxy authority.
KeywordsFeeding Tube Advance Directive Advance Care Planning Ethic Consultation Persistent Vegetative State
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