Holding on to Autonomy: Social Work and Anthropology PhD student examines medical aid in dying
Wayne State University School of Social Work and Anthropology (SWAN) doctoral student Caitlin Cassady was recently selected to receive a research stimulus grant by the Provost's Social & Behavioral Determinants of Health (SBDH) Steering Committee for her project “Medical aid in dying: physician beliefs, practices, and respect for autonomy”.
Cassady was one of five junior faculty and doctoral students selected to receive $5,000 over the course of a year as part of the 2021 Research Stimulus Program. The SBDH Steering Committee selected projects which took an interprofessional approach to exploring social and behavioral factor interactions and their impact on public health.
As a SWAN student, Cassady is no stranger to the advantage of multidisciplinary collaborations and the impact they can have on research. “My social work background brought me to the topic of medical aid in dying (MAID) and my anthropology work has really helped with methodology and theory perspectives on ‘choice’ and ‘autonomy’ in medical situations.” As a social worker in Oregon, Cassady worked with an individual who utilized MAID, also called aid-in-dying or assisted suicide. MAID, defined as “a physician providing, at the patient’s request, a prescription for a lethal dose of medication that the patient can self-administer by ingestion, with the explicit intention of ending life” (AAHPM Board of Directors, 2016, para. 2), has been an option for Oregon patients since the late 1990’s. “My experience as a hospice social worker in a state where MAID is legal also gave me some on-the-ground knowledge of the process, barriers, what conversations might actually look like, and other things that an anthropologist only gets by doing ethnography.”
Autonomy, “to act with understanding, intention, and free from control” (Beauchamp & Childress, 2001), is a major focus of Cassady’s study as it is a central concern for both advocates and opponents of MAID, and for dying persons and their families in general. A recent national survey using data from the American Medical Association’s physician database revealed that the majority of physicians surveyed (49%) believed that people request MAID because of pain (Hetzler, 2019, p. 581). However, data from actual MAID cases indicates that existential issues such as loss of autonomy are at least as important (Ganzini et al., 2009), or much more important than concerns about pain. Oregon’s most recent annual report supports the importance of autonomy indicating that 90.6% of people requesting MAID from 1998-2020 were concerned with losing autonomy, compared with just 27.4% from that same time span who cited pain as a concern (Oregon Public Health Division, 2021, p.12). “While I am studying MAID specifically, I am hoping that some of the insights gained about how doctors view themselves as respecting autonomy may also inform future research about other non-normative or stigmatized death situations.”
As an increasing number of patients across North America gain access to MAID, the need for further research on the subject becomes ever more pressing. According to Compassion and Choices, MAID is now legal in 11 US jurisdictions (10 states and Washington D.C.) and there is pending legislation in 12 more states (2021). “Although more states in the U.S. have legalized MAID in the last few years, a person has to be expected to die fairly soon in order to request it. This is not the case however in Canada where patients simply need to have a grievous and irremediable medical condition” (Government of Canada, 2021). In 2023, Canada will begin allowing people who suffer solely from mental illness to request MAID. “There is some really important research on this topic already but we need to understand so much more, especially regarding practitioners. Much of the existing knowledge on physicians’ beliefs, understandings, and concerns about MAID has been gleaned from one-shot survey responses. Interviews, and especially narratives, add rich new data to understand this emerging and evolving practice.”
My research aims not only to contribute knowledge that can help improve end-of-life care for patients, but also knowledge that can improve information and training for practitioners in places where MAID is currently or will soon be legal. I hope that through the expansion of this knowledge base, I can help promote equity at the end of life. - Caitlin Cassady
With the support of faculty mentor Andrea Sankar, professor and chair of anthropology and SWAN doctoral committee members Faith Hopp, associate professor of social work, and Mark Luborsky, professor of anthropology and gerontology, Cassady will complete a series of two interviews with physicians who provide MAID in states where it is legal. The first interview will ask physicians to tell stories of their experiences with MAID and the second will ask direct questions about their beliefs, values, and practice of respect for autonomy where MAID cases are concerned. “Because the situations are so personal and still somewhat stigmatized, MAID situations are really hard to study with participant observation—being there in person for someone’s death is a big ask even before the shifted social interaction norms of COVID. So the methodology is trying to get at what physicians say or present as important when they are just talking about their experiences.” Understanding the differences or similarities between themes in these two interviews can give important insights into beliefs, values, or practices surrounding MAID that might be important or common but not made explicit. For instance, if a doctor tells a narrative that features family or friends as highly involved in conversations and planning about MAID but then in the second interview talks about how it has to be solely the decision of the person who is dying, then that discrepancy points out the need to think more carefully about what autonomy means in real-life settings.
Current evidence on physician beliefs and attitudes about MAID shows that, although many physicians believe MAID should be a legal option, very few are willing to be involved in it (Hetzler, 2019). “The lack of training and guidance for practitioners navigating MAID is a consistent problem in both the U.S. and Canada. I am excited that the School of Social Work chose to fund this project and sees the importance of this work and its impact on people facing the end of life and the practitioners who care for them.”
AAHPM Board of Directors (2016). Statement on Physician-Assisted Dying. Retrieved on April 14, 2021 from http://aahpm.org/positions/pad
Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics. Oxford University Press, USA.
Compassion and Choices, 2021. In Your State. Retrieved on April 26, 2021 from https://compassionandchoices.org/take-action/in-your-state/
Ganzini, L., Goy, E. R., & Dobscha, S. K. (2009). Oregonians' reasons for requesting physician aid in dying. Archives of Internal Medicine, 169(5), 489-492.
Hetzler III, P. T., Nie, J., Zhou, A., & Dugdale, L. S. (2019). Focus: Death: A Report of Physicians’ Beliefs about Physician-Assisted Suicide: A National Study. The Yale journal of biology and medicine, 92(4), 575.
Government of Canada, 2021. Medical Aid in Dying. Retrieved on July 19,2021 from https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html#grievous