Choreographing Death: A Social Phenomenology of Medical Aid‐in‐dying in the United States

Abstract

This article draws on ethnographic research on the implementation of Vermont's 2013 medical aid-in-dying (AID) law to explore a fundamental paradox: While public discourse characterizes AID as a mechanism for achieving an individually controlled autonomous death, the medico-legal framework that organizes it enlists social support and cultivates dependencies. Therefore, while patients pursuing AID may avoid certain types of dependency-such as those involved in bodily care-the process requires them to affirm and strengthen other bureaucratic, material, and affective forms. By tracing the social phenomenology of several AID deaths, I illustrate how AID results in distinctive forms of sociality and dependency that require terminally ill people and caregivers to embrace a collaborative stance toward choreographing death. I argue that assisted dying offers an opportunity to resist dominant U.S. cultural narratives that view dependency in purely negative terms and reimagine the relationships between disability, dependency, and care at the end of life.

What is the cultural value of dying in an era of assisted dying?

“…We use quotation marks to indicate that in fact there is no such thing as natural dying, as 'irreversible terminal decline' is constantly subject to human interventions of one kind or another, and death is often 'timed' through medical decisionmaking. [55,5,57] We surmise that while the advent of assisted dying legislation is leading to new social rituals, meanings, and relations of care, any of the cultural changes we discuss here would be incremental and debated rather than dramatic and linear. Further, instead of perceiving a negation or an impoverishment of cultural scripts for the dying we find a certain degree of continuity within existing death systems in the countries which have legalized the practice.…”

“…However, it has been argued that assisted dying does not wholly negate the opportunity to care, but instead alters the duration and type of care. [55] If we understand assisted dying to be a refusal to endure or even to enter into a state of precarity, then it could be understood to be a different type of 'gift' which can be caringly given; compassion by a different means. In this framing, assisted dying may also be a gift that is willingly given by the recipient, in order to lessen the perceived or real burden of care.…”

The power of suggestion

“…Codes were then assigned to excerpts of interview text that matched the code definition by two coders, each blinded to the other's work. Research design and methods are described in more detail elsewhere (Buchbinder 2018a(Buchbinder , 2018b. For this analysis, I focus on the 'duty to inform' code.…”

Caregivers' Experiences With Medical Aid-In-Dying in Vermont: A Qualitative Study

“…Previous reports from this study have examined health care providers' experiences with implementing Act 39 6,29 and the nature of dependency in AID. 30 For this analysis, we focus on interviews conducted with a subset of caregivers who were present for the death of a terminally ill patient, who pursued AID under Act 39, and ultimately ingested lethal medication.…”