https://www.ucpress.edu/book/9780520380202/scripting-death

Hyemin Lee: Readers might be curious about your intellectual trajectory as well as the motivation behind the years-long research and writing this book. What were the starting points that led you to explore this issue? How are your previous books and research in dialogue with Scripting Death?

Mara Buchbinder: I came to my research on assisted death via a study that I did in 2012 investigating how abortion providers in North Carolina were adapting to a new restrictive abortion law that introduced a 24-hour waiting period and counseling with state-mandated content. That study made me curious about other sites in which law and medicine collide. The end of life piqued my interest because it is one of the areas of medicine that is most heavily regulated by law. A palliative care physician suggested that assisted dying would be ripe for the sort of inquiry that I was interested in. When I learned that Vermont was the U.S. state that had most recently legalized medical aid in dying, I was hooked—I had spent a lot of time in Vermont and knew I could successfully carry out a long-term project there, despite the distance. Studying the implementation of assisted dying in Vermont, similar to studying the implementation of a new abortion law, also picked up a thread from my previous work on newborn screening, through which I became interested in how new health policies are implemented, navigated, and contested by patients, families, and clinicians. Each of these projects are also animated by concerns about sociality and care in matters of health and illness.

The concept of scripting came into play relatively late in my work on the project. After completing my fieldwork, I became fascinated with the ways in which the concept of scripting could serve as a useful frame for thinking about human agency over death. My use of scripting built on my previous work on abortion counseling scripts (Buchbinder 2016), in which I considered the multiple meanings of scripts and scripting. My use of “scripting” in Scripting Death highlights the theatrical dimensions of planning for and controlling one’s death, yet it offers the added value of several additional analytic dimensions, including the bureaucratic and regulatory aspects of the process, and the provision of a prescription (i.e., a “script” for death-hastening medication). Because it invites consideration of the performative dimensions of clinical speech, scripting is also a useful analytic for bridging medical and linguistic anthropology, which is a cross-cutting theme in my work. In sum, Scripting Death brought together several different strands of my previous projects in a way that I found intellectually exciting.

Hyemin Lee: One of the central arguments of this book is how the legalization of aid in dying represents the cultural imaginaries surrounding “aspirational death,” where the expectations for “choice” and “control” impact how people imagine the experience of dying. Could you tell us more about how the cases of aid in dying described in the book offer broader and more instructive pictures of assisted death in America more generally?

Mara Buchbinder: Doing this research in Vermont was an amazing opportunity to return to a state that I loved, where I had spent large chunks of my childhood. But it was also challenging because it’s so small. The absolute numbers of medical aid in dying utilization in Vermont, while reflecting national rates, are rather small—just 52 patients filed paperwork to use it in the first four years after the law passed. So, while it is a fascinating case study, I understand why it may be tempting to ask why this case matters on a bigger scale. However, the themes that I elucidated regarding agency and choice at the end of life are relevant beyond the context of assisted death. In the Conclusion, I discuss how we are seeing these desires reflected in a variety of other end-of-life practices in the US, though typically they focus on burial and funerary practices. Shannon Lee Dawdy’s excellent book American Afterlives: Reinventing Death in the 21^st Century (Princeton University Press, 2021) shows similarly. Medical aid in dying makes it possible to realize a particular aspect of aspirational death—namely, control over the time of death. This enables one to eliminate certain types of suffering that often accompany dying from a prolonged terminal illness. But even if controlling the time of death is not possible, there are other ways in which middle-class people strive for aspirational deaths, within and outside the US. This is also demonstrated beautifully in Anne Allison’s recent book, Lonely Death (Duke University Press, 2023).

Hyemin Lee: Upon seeing the title of the book, Scripting Death, and reading your beautifully written Chapter 6, Choreographing Death, readers might be interested in the concepts of “script” and “choreography.” Both refer to certain modes of action but also entail significant social phenomenology of aid-in-dying deaths. How did you come up with posing these as key concepts for understanding human control over death and, ultimately, for portraying a bigger picture of aid in dying in the American cultural context? 

Mara Buchbinder: The concept of scripting speaks to broader concerns about managing, ordering, and controlling death, as well as theoretical questions about human agency over death. Choreographing serves a similar function in Chapter 6, yet I see its analytic scope as more narrowly focused on the scene of death, as opposed to scripting, which encompasses all aspects of the process, including following the bureaucratical protocol to ensure compliance with the legal requirements, obtaining a lethal prescription, and regulating clinical communication. These were not emic terms; they emerged in my interpretive analysis. As I mentioned above, I came to scripting because I had previously engaged this concept in my work on abortion counseling. I was struck by its relevance to the case of assisted dying and I thought I could build on, and deepen, my earlier use of this terminology. The concept of choreography came to me, in part, because I noticed the ways that caregivers performed crucial social, emotional, and material labor to help their loved ones realize aspirational deaths. It occurred to me early on that they were essentially “stage-managing” these deaths, particularly because their loved ones eventually grew too sick and weak to carry out the necessary tasks on their own. The choreography I am concerned with in that chapter is very much a relational practice, which highlights the intersubjective nature of assisted death. It’s not a radically autonomous act, as people often presume.

Hyemin Lee: It is striking to find out the structural constraints that lead to critical access inequalities embedded in the legalization of aid in dying. Could you elaborate more on what your finding tells us about the larger patterns in US health care and the best path forward for improving the access issue? 

Mara Buchbinder: It should not have surprised me to find that patients encountered significant barriers to accessing assisted death in legal jurisdictions. As you note, this pattern mirrors largescale, deeply entrenched access barriers that patients find across many sectors of US healthcare. On the other hand, these access barriers contradict the dominant messaging from advocacy groups promoting legalized assisted dying, which suggests that the primary barriers are legal ones. The access difficulties repeatedly surprised, troubled, and enraged patients and families in Vermont. This pattern is reflected in media reports supporting my findings from other permissive jurisdictions in the US. One of my major goals in writing Scripting Death was to expose the illusion of end-of-life choice. I wanted to highlight the gaps between advocacy narratives regarding patients’ rights to self-determination and autonomy at the end of life—which tend to make the option of assisted dying seem to be a simple matter of legalizing the practice—and the realities of access barriers, bureaucratic obstacles, and multiple forms of assistance from caregivers and clinicians that must be navigated to accomplish an assisted death.

My findings tell us, perhaps not surprisingly, that relatively affluent people who are better connected to physician networks will have more options at the end of life, including medical aid in dying. Constrained access to medical aid in dying presents a conundrum for both scholars and practitioners, however, because it is a medical service that is death-producing rather than health-producing. For many physicians, access to assisted dying should be hard; they see access hurdles as a safeguard against abuse or coercion. We don’t want to improve access to a swift death for people who cannot access good care. For this reason, I think that improving access to palliative care is much more of a priority than improving access to medical aid in dying, particularly for socioeconomically marginalized groups.

Hyemin Lee: As a concluding question, I would like to ask about your method–doing ethnographic research that documents, broadly, death. Could you speak more about your research design for ethnographically investigating death and dying? Did you encounter any challenges and questions when you first designed your research on this research? How did you manage your positioning as a researcher and a person with your own stance, values, and views?

Mara Buchbinder: One challenge I encountered was that it was very hard to identify patients to follow prospectively who were willing to speak with me about their desire to use medical aid in dying. I understood and deeply respected the fact that few people close to the end of life would be willing to share some of their limited time with a stranger. I decided to lean heavily on retrospective accounts from family members and friends when it proved difficult to recruit many terminally ill patients. An unexpected advantage of this approach was that I was able, in several cases, to interview multiple people about a specific individual’s death. This enabled me to triangulate accounts across multiple sources and identify areas of converging and diverging understandings, a strategy that proved analytically fruitful.

With regard to my own positioning, this really evolved over time. When I started, I told everyone I met that I was approaching this project from a position of neutrality. I found my views repeatedly challenged as I sympathized with perspectives that I had not anticipated sympathizing with—such as a pro-life advocate who explained to me that she was not afraid of death because she had been exposed to it from an early age. Over time, I began to reframe my “neutral” perspective through the lens of ambivalence. (I write about this in the Introduction.)

I am frequently asked how I experienced this fieldwork on a personal level, often by people who assume that it was difficult to hear stories about death and bear witness to survivors’ suffering. This research was certainly sad. For the most part, however, I did not find it personally challenging. My overwhelming feeling was one of gratitude for the connections I formed with my interlocutors and the stories they shared with me. I deeply appreciated the intimate encounters with research participants and all that they taught me about living well while dying. I felt like this project—more than any of my previous projects—had taught me something that would be valuable on a deeply personal level, rather than just an intellectual or scholarly one.

References

Buchbinder, Mara. 2016. Scripting Dissent: US Abortion Laws, State Power, and the Politics of Scripted Speech. American Anthropologist 118(4):772-783.