Disability Studies Quarterly Blog
Review by: Megan Wright, Penn State University, Email: email@example.com
Keywords: aging; medicine; bioethics; law
Professor Mara Buchbinder’s monograph, Scripting Death: Stories of Assisted Dying in America, is the culmination of years of in-depth qualitative research on the implementation of Vermont’s Patient Choice and Control at the End of Life Act. This Act legalized physician aid in dying, which is also known by opponents as physician-assisted suicide. Like other states that have legalized physician aid in dying, people are only eligible to hasten death in this manner if they are terminally ill (i.e., certified by two physicians that they are likely to die within six months) adults with decisional capacity residing in Vermont who voluntarily make multiple requests for life-ending medication, which they must be able to self-administer. Buchbinder is a medical anthropologist, and so, she does not engage in significant normative defenses or critiques of aid in dying, although she is honest with her readers about her personal stance and how this changed over time. She is not neutral, but rather “ambivalent.”
As part of her research, Buchbinder interviewed physicians, other clinicians such as nurses and social workers, caregivers, advocates for and against legalization of aid in dying, and terminally ill people about their perspectives on and experiences with aid in dying in Vermont (n=144 interviews). Buchbinder also supplemented these interviews with ethnographic observation at medical conferences and events in Vermont where aid in dying or end of life was the focus. Readers may therefore quibble with the subtitle of her book as it more accurately should read “Stories of Assisted Dying in Vermont.” hile Buchbinder claims that the perspectives and experiences of the individuals she interviewed are similar to those of individuals in other states where aid in dying is legal, there may be relevant differences between states that would result in the collection of very different stories. For example, Vermont is a very white state compared to California where aid in dying is also legal, and the text of their laws differs as well. Her research is thus best viewed as a high quality, data rich case study that helps develop theories, rather than a representative of all experiences with aid in dying in the United States.
Buchbinder presents her research findings using the lens of “scripting death,” by which she means that the experience of death is no longer something that just happens to everyone, but is rather an event that some people want to plan and control in hopes of achieving what she refers to as an “aspirational” death. The legalization of physician aid in dying is part of a trend towards expanding options in achieving a good death. Buchbinder rightly notes, however, that this option is not available to everyone who qualifies to use the law, and her data shed some light on reasons for disparities in access, which include: ignorance about aid in dying, difficulty finding providers willing to participate, lack of money to pay for the life-ending prescription medication, burdens of travel while terminally ill, and not having supportive family or friends to assist in the process. So although legalization of aid in dying in theory enhances agency in controlling death, in practice, there is only the “illusion of access,” and the patients who select aid in dying tend to be white and educated with significant cultural health capital. Buchbinder acknowledges that only a very tiny subset of people use aid in dying, but notes that aid in dying laws and practices reveal trends toward scripting death generally.
Readers familiar with debates about aid in dying will know about the concerns regarding how legalization of this end-of-life option will affect people with disabilities. Specifically, some are concerned that when terminally ill people seek to hasten death using aid in dying to avoid living with what they consider to be a low quality of life or to avoid dependence on others, this motivation devalues the lives of non-terminally ill persons with disabilities who may have a similar quality of life or exist in relationships of dependence. Relatedly, there is concern that people with disabilities will be pressured to hasten their death whether or not they are terminally ill. Buchbinder is aware of these concerns and briefly mentions and responds to them, but her book is primarily empirical rather than normative, and so she describes and analyzes others’ views about Vermont’s law, and disability rights and justice is not her focus.
Her findings do trouble the narrative that aid in dying is all about avoiding dependence and burdening others, however. Her data reveals that terminally ill persons who elect this option need a significant amount of assistance from their family, friends, and healthcare providers to navigate the legal process and provide emotional support and physical assistance. Buchbinder asserts, therefore, that aid in dying is deeply relational and occurs in the context of dependence on others and “offers critical opportunities to reimagine the relationships between disability, dependency, and care at the end of life” (161).
I would have appreciated more analysis of a different issue with respect to disability and equity, however. Namely, I think disparities in access to this end-of-life by type of disability is undertheorized. Buchbinder does note how protecting persons thought to be vulnerable through legislative safeguards may actually disadvantage some persons with disabilities who would like to use aid in dying. Indeed, some of her research participants argued that aid in dying laws are “designed with cancer patients in mind” (128) and that patients with ALS may be disadvantaged especially with respect to the self-administration requirement. Overall, though, the book is missing data and analysis on one of the more pressing issues in contemporary aid in dying debates: whether persons with cognitive impairments should have access, something one of her participants mentions during an interview. Readers interested in the effects of aid in dying laws on access for persons with decisional impairments will have to look elsewhere (see e.g., Wright 2021). Further, there is a lot of research still to do on the views of persons with disabilities on aid in dying (more specifically, the views of the general population of persons with disabilities and not solely the views of disability activists) and how disability affects end of life choices and care.
For methodological reasons, Buchbinder conducted very few interviews with terminally ill persons or persons who used aid in dying, and so most of the narratives of patients’ experiences are included in the final substantive chapter of the book and are told by their families, friends, and healthcare providers. While I wish we had more patients’ voices, the rich data from healthcare providers on issues such as lacking knowledge about how to implement aid in dying, whether patients or providers should initiate conversations about aid in dying, and how aid in dying does or does not conflict with their professional role as physicians is all insightful. It would have been great to have more participation from clinicians who were strongly opposed to aid in dying, however, instead of just conflicted about participating.
This book will be appreciated by anyone who is interested in the topic of end-of-life decision making, including both a scholarly (e.g., bioethicists, clinicians, and their students) and educated but lay audience. Further, social scientists looking for a model of excellent qualitative research will benefit from reading this book. Finally, for law and society scholars or policymakers interested in examples of how laws are actually implemented (i.e., how law is put in action), this book is an excellent case study. Indeed, the rushed and chaotic nature of legislative drafting in Vermont serves as a cautionary tale to other states as there were several undefined provisions and unintentional absences. Buchbinder points, for example, to the lack of definition on “resident” of Vermont or what “capable” meant, as well as to lack of consideration of immunity for pharmacists participating in aid in dying. Such issues made some providers unwilling to participate, and led other providers to make fundamentally legal (rather than clinical) decisions, co-constructing law by implementing it in practice.
Megan S. Wright. 2021. Equality of Autonomy? Physician Aid in Dying and Supported Decision-Making? Arizona Law Review 63:157-197.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.