Response to Guay et al. (2022): The Issue Is . . . What If Deliberately Dying Is an Occupation?

Abstract

A recent “The Issue Is . . .” column by Guay et al. (2022) uses an occupational science and occupational therapy theoretical reflection to consider deliberately dying as a purposeful and meaningful occupation. The authors state that their argument will not include a full exploration of the ethics involved in their discourse about deliberately dying. Although we appreciate the authors’ challenge to Western perspectives of occupation, we believe their premise is faulty and potentially detrimental precisely because of the omission of bioethics and disability studies insights.The term deliberately dying is a euphemism used for assisted suicide and voluntary euthanasia, concepts that we feel cannot be separated from the ethical implications of considering deliberately dying as an occupation. Similarly, the authors recognize the legal definitions and distinguish between suicide and deliberately dying, but then dismiss this context as irrelevant to discussions of occupations. Omitting the ethical, and potentially legal, implications of classifying deliberately dying as an occupation has the potential to devalue living as a disabled person.The perspectives of bioethics and disability studies must be included to challenge Western perspectives of what lives are worth living and the perspectives of ableism, sanism, and the medicalization of disabled people. Although the authors include disabled people in their examples, they fail to explore the cultural, political, and economic contexts of disabled people’s experiences. The importance of discussing these experiences is illustrated in the case of Larry McAfee, a quadriplegic man who legally won the right to die but elected to continue living when given adequate supports to live in the community rather than a nursing home (Shapiro, 1990). The authors speak to the ethical and disability justice concerns in their argument; however, dead people cannot experience the justice-oriented goal of experiencing full citizenship.The authors also appear to abandon their challenge to Western concepts of occupation when choosing definitions that are embedded in ableist influences that fuel bias and discrimination toward disabled people. The clearest example is their choice to describe occupation as connected to community obligations (Guay et al., 2022). By including “to offer release from family disgrace or torment, to fulfill social obligations, or to have a moral or ritual purpose” (Guay et al., 2022, p. 7) as reasons to pursue deliberately dying, the authors perpetuate ableist notions that disabled people are a burden and that the world would be better off without them.Finally, the authors appear to blur the line between managing a natural progression of dying versus intentionally electing to facilitate death. Palliative care focuses on achieving the best possible quality of life at any stage of a disease or condition. Occupational therapy practitioners do play a vital role in the context of palliative care (Cooper & Kite, 2015). The authors suggest deliberately dying as an option when there is lack of access to palliative care services. We would argue that lack of access is an occupational injustice and encourage occupational therapy practitioners to work at individual and systems levels of advocacy when faced with this scenario (Bailliard et al., 2020).It is our stance that the failure to include the voices of the disabled in this examination reinforces the historical social consciousness that living with disability is worse than death. We stress that any discourse on occupation must answer the call from McArthur and Gill (2021) and reflect on how disability studies theories can enrich the ethical and bioethical reasoning of occupational science and occupational therapy. We agree that the definition of occupation must be critiqued, but using the example of deliberately dying as an occupation is not an appropriate example. Failure to include the voice of the disabled in any discussion of issues that concern the disability community is a dangerous path and one that academic and professional conversations must avoid at all costs.We acknowledge the support and editorial assistance received from the following Disability Studies + Occupational Therapy Network members: Aster Harrison, PhD, OTR/L, Jenna Heffron, PhD, OTR/L, Jacqueline Kish, PhD, OTR/L, and Danbi Lee, PhD, OTR/L.