End of Life and Autonomy: The Case for Relational Nudges in End-of-Life Decision-Making Law and Policy

Abstract

Autonomy is a central principle in many areas of health law. In the case of end-of-life decision-making law and policy, however, the principle of autonomy requires revision. On the whole, law conceptualizes autonomy at the end of life as an individual making private, personal decisions based solely on their interests and values, and independent of others. But ordinary people understand autonomous decision making at the end of life differently, in a way that acknowledges the importance of their interpersonal relationships. Social science research has documented that strengthening relationships with others, sharing responsibility in the decision-making process with healthcare providers, and taking care to not burden loved ones become important when confronting death and making decisions at the end of life.  

The divergence in how law and most people conceptualize autonomy becomes particularly consequential when people do not have decision-making capacity when an end-of-life decision must be made, and have not adequately planned in advance for loss of capacity. Failures of rationality explain this all too common situation: a fear and avoidance of death makes people less likely to plan for it, and even when they do plan, they are unable to anticipate every possible end-of-life scenario and their preferences for each. In such cases, the law provides default processes and standards for end-of-life decision making, which constitute a best guess of a surrogate decision-making process that will effectuate the principle of autonomy. However, in this default decision scheme, relational concerns are often accorded a different weight or valence than most people would prefer as evidenced in empirical studies. For example, state statutes may direct an incapacitated person’s surrogate to make end-of-life decisions in the context of the patient’s religious or moral beliefs but not explicitly instruct surrogates to consider the patient’s relationality. Decisions made at the end of life may thus not accord with people’s values, preferences, and interests. Paradoxically, therefore, the current defaults in end-of-life law may impede rather than promote autonomy.

In order to address this unintended consequence and make consistent the purpose and intended outcome of end-of-life decision-making law and policy, which is respect for autonomy, this Article argues for changes to accommodate the relational nature of autonomy at the end of life. Drawing on the law and behavioral economics literature about choice architecture, I argue that relational “nudges” should be built into end-of-life decision-making law and policy. The proposed nudges are meant to combat failures of rationality, promote a relational autonomy, and reduce negative externalities in end-of-life decision making. These nudges would be designed to affect an individual’s end-of-life decisions prior to loss of capacity; a surrogate’s healthcare decisions in the absence of advance directives; and, healthcare providers’ shared decisions with the patient or surrogate. While this necessitates changing some defaults, more consequentially, the nudges at the level of policy would also change the way information and choices are presented to decision makers, such as patients and physicians, to prime the decision maker to decide, in part, based on relationality. These changes may increase the likelihood that end-of-life decisions are made in accordance with most persons’ stated preferences—namely that these decisions are shared with and made in consideration of others.

Keywords: End-of-Life, Healthcare Decision Making, Law and Medicine