Legislative support for physician aid-in-dying (PAD) in the United States has risen steadily in recent years. Five states currently authorize physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill, adult patient for the purpose of ending the patient’s life, provided that certain preconditions are met. With ongoing legislative activities in many other states, these laws are expected to spread nationally. While such laws remain contentious, regardless of one’s moral position on PAD, this shifting legislative climate raises questions of broad public significance about how the legalization of PAD affects death, dying, and end-of-life care in the US. Much of the social scientific research on PAD in the U.S. has focused on the social and political factors that give rise to legalization. Less is known about how jurisdictions accommodate PAD as a new end-of-life practice and incorporate it into existing medical and bureaucratic institutions responsible for managing death. Dr. Mara Buchbinder, a medical anthropologist at the University of North Carolina at Chapel Hill, will investigate the implementation and cultural impact of a recently enacted PAD law. The project will yield descriptive information that can be used to improve clinical practices and end-of-life communication in the U.S. The findings will also enhance democratic process in states considering PAD laws by contributing a more comprehensive understanding of the societal effects of PAD laws. Teaching and mentoring activities will extend the broader impacts of this project, most directly, through the training of a social science graduate student.
The project focuses on Vermont’s “Patient Choice and Control at End of Life” Act (Act 39), enacted in May 2013. The 2-year ethnographic study will address the following overarching research questions: How do ordinary people understand, access, experience, and contest the right to PAD once it has been granted? How do healthcare providers and policy stakeholders accommodate or resist PAD as a new end-of-life practice? How does PAD affect the cultural landscape of care for the dying in the US? Due to the recent enactment of Act 39, and Vermont’s small size and the geographic proximity of key institutions, Vermont offers an unparalleled setting for documenting emergent responses to the law across multiple sites (e.g. legal/medical, lay people/experts, urban/rural). Data collection will include: 1) semi-structured interviews with patients, survivors of people who have used Act 39, healthcare providers and administrators, activists, and legislators, and 2) participant observation in settings in which PAD is likely to be discussed (e.g. continuing education events for healthcare providers, community advocacy events). Qualitative data analysis will yield valuable information about the broad sociocultural consequences of legalizing PAD, including unintended consequences, that will be relevant to US policymakers, clinicians, patients, and families. It will also contribute to emerging social science theory on the relation between law, ethics, and social change.
Vermont Study on Aid in Dying (SAID) Project