Mara Buchbinder is a medical anthropologist and Associate Professor in the Department of Social Medicine at the University of North Carolina at Chapel Hill. Her new book, Scripting Death: Stories of Assisted Dying in America, takes a close look at the rise of medical aid-in-dying, which is now legal in ten U.S. jurisdictions. The book offers an unprecedented, in-depth account of how patients, caregivers, and health care providers navigate aid-in-dying as a new medical frontier in the aftermath of legalization.
Why did you want to write this book?
Over the last decade, medical aid-in-dying has expanded rapidly across the US and attracted a lot of media attention, but very little has been publicly known about what happens once new laws are put into place. Advocates presume a straightforward path in which a terminally ill patient desiring to hasten death requests assistance from a trusted physician, who will accede to the patient’s wishes. Yet this narrative overlooks the many roadblocks to accessing aid-in-dying in states where it is legal, including identifying a physician willing to prescribe, paying for the medication, and following a complex bureaucratic protocol to ensure that all of the legislative safeguards are met. One of my main goals in writing this book was to provide a more complete picture of medical aid-in-dying than the advocacy narratives suggest.
What can an anthropological perspective add to medical aid-in-dying? What makes this book different?
Most of the previous books about medical aid-in-dying have focused on questions about whether it is ethical and whether it should be legalized. Scripting Death does not make the case for or against assisted death, nor does it promote a particular ideological viewpoint. Instead, it aims to describe what medical aid-in-dying actually does in people’s lives, for better or worse. I write from a place of fundamental ambivalence about the practice. In addition, many of the sociological books about medical aid-in-dying have tracked social movements around the right to die. Until now, social scientists have not written about what happens after the hard-won battles for legalization. This is really what fascinates me: the messy yet ordinary business of turning law into practice. By describing real people’s actual experiences with medical aid-in-dying, Scripting Death chronicles aspects of the process that have received little public attention thus far.
What was most surprising in your research?
Initially, what surprised me most was how much my research challenged my own views about medical aid-in-dying. I had come to this project after conducting research on physicians’ adaptations to a new restrictive abortion law in North Carolina. I approached that research as a pro-choice advocate for abortion rights. I expected to have a similar orientation to this research, but I quickly realized that my views on medically assisted death were not as easy to map as they had been in the abortion setting.
I began my research feeling fairly supportive of medical aid-in-dying, but during my first summer of fieldwork, my views swung dramatically in the other direction after interviewing several activists who opposed assisted death. Some of their reasons for opposing it were unexpected: they championed a “natural death,” and were comfortable with the idea of depending on others for end-of-life care, so assisted death seemed unnecessary. The more I learned, the more I understood the challenges of adopting medical aid-in-dying as public policy. Much more than a simple matter of affirming a patient’s “right to die,” physicians had to be onboard with the practice, and there had to be a regulatory apparatus to protect against abuse.
Eventually, my views on medical aid-in-dying shifted back toward a more supportive stance as I saw the powerful difference that it made for individual patients, and some physicians expressed profound support. Yet I remain, overall, ambivalent. I think assisted death is, for some people, a wonderful end-of-life option. But I also think that the public rhetoric surrounding it tends to oversimplify the issues. It is much more than a matter of individual autonomy. It strains health care providers more than many advocates acknowledge, and it is not the right public policy intervention to make a significant impact in improving end-of-life care for the largest number of people.
How did you deal with studying such a depressing topic?
People often assume that it would be difficult to study death. There were certainly some sorrowful moments, but this research was far from depressing. Receiving stories of death from complete strangers was an enormous honor and a deeply spiritual experience. It changed the way that I live my life by making me more fully aware of my own mortality. It helped me overcome a lifelong fear of death. Since beginning this work, I’ve connected more deeply with the people that matter to me. One of the palliative care physicians I interviewed told me that she lives her life a bit differently because she is constantly surrounded by people who are dying: she doesn’t put off travel or plan to do everything in her retirement. This comment really resonated with me. Writing this book has made me less likely to put off big changes or stew in the unknown future. It’s also changed the way that I engage with people who are grieving and made me more confident in offering condolences. All of these things have made it much more of a gift than a burden.
What suggestions do you have for improving policy around medical aid-in-dying?
For physicians, better training and education in communication about assisted dying and the various medication protocols are needed. Many of the physicians I interviewed noted that it was such a relief to be talking to me about their experiences because they had found assisting patients to be very isolating. Several did not have colleagues who had been through the process whom they could turn to with questions. For patients and families, greater transparency around the legislative requirements in various jurisdictions, the process of navigating access, and what to expect from a medically assisted death would be tremendously helpful. It is also critical that expanded access to medical aid-in-dying be accompanied by expanded access to robust hospice and palliative care services, so that people are not choosing to hasten death out of a lack of alternative options. Finally, we need better standards to guide the data collected about medical aid-in-dying by state health departments. As it stands, there is a lot of variability in what we know about medically assisted deaths, which makes it difficult to assess safety and effectiveness and understand how the various medication protocols work.
How has the coronavirus pandemic shifted your thinking on medically assisted death?
I finished writing Scripting Death during the pandemic, and it was a bit jarring to be writing about such a clean, orderly, and anticipated type of death as the chaos of COVID-19 was unfolding around me. One of the key takeaway messages of the bookis that a medically assisted death is a privileged death; it is ultimately inaccessible to many of the people who pursue it. The pandemic painfully demonstrated just what a privilege it is to choose the type of death you have.
It also brought death to the forefront of public consciousness in ways that I couldn’t have anticipated. Over the past year, there has been a dramatic rise in attention to end-of-life planning as palliative care experts have urged people to write their advanced directives and entrepreneurs have tapped into the market potential of death by creating apps and businesses to help people plan and document their wishes. These movements are fueled by the same cultural desires that have fueled the growth in medical aid-in-dying—namely, a desire to infuse the dying process with personal meaning and control. In a strange way, the pandemic has made my research even more relevant. In uncertain times, who wouldn’t want a little more control?