I have always wondered how death played into the profession of occupational therapy. As there are many definitions of occupation that have changed over time, this can be challenging. However, one thing seems to be missing from these definitions and that is the concept of, preparation of, and process of death. One definition of occupation is what people do that is part of their being. Another definition of occupation is what is culturally or personally meaningful. Or yet another definition is the activities that meet human needs for self-care, enjoyment, and participation in society. Well death doesn’t have to do with that does it? Once one dies, at least when they leave this earth, they would no longer be considered part of society, at least physically anyway. It’s possible there is a definition out there of occupation that may imply or suggest death, but I don’t think it would be explicitly stated. And for the cultural part, that may fit the definition, but at least in popular mainstream American culture, I can tell you that death is a very controversial and taboo topic. Even the act of aging and growing old I would argue is seen as a negative thing in society. But the thing about occupations is that they change over time.
The American journal of occupational therapy published an opinion piece titled what if deliberately dying is an occupation? And in this piece, the authors talk about how deliberately ending one’s own life, as in euthanasia may fit with the concept of occupation. One distinction I will make is and distinction is that this is different from suicide. I am not saying to dismiss this or not consider it, but there is a difference. Euthanasia itself is very controversial and laws and policies vary from state to state and around the world, so there is no one size fits all approach.
In my google search for euthanasia states, as of 2021, Oregon, Washington DC, Hawaii, Washington, Maine, Colorado, New Jersey, California, and Vermont are on the list, but only for passive euthanasia, not active. Active euthanasia is when a physician triggers death using a prescription for a lethal dose of medication. Passive is when medical efforts to prolong life are stopped and the disease takes its course, which most of us are probably familiar with if it’s legal where you live with palliative care. But what I wanted to take a step back and focus more on was the philosophical concept of deliberately dying and its role in occupational therapy.
Because I think there is a sharp disconnect, at least from what I have seen in practice. For example, when I was training as a new-grad occupational therapist and shadowing a more seasoned occupational therapist, I was told that it was best to discharge our services and step out for a patient who took a turn for the worst and was going to receive end-of-life palliative care. To me, this kind of did not make sense. I know that these other services play an important role and they are fully capable, but I felt like and I still feel like occupational therapy has a lot they can do for patients either in their end-of-life natural death or for the more provocative topic of deliberately dying. Like aren’t there some goals these patients still want to achieve that are meaningful to them even leading up to their death, like settling their affairs or social relationships?
I think we can talk about old definitions and concepts and theories all we want, but the state of occupational therapy modern is a focus on one’s control over their health and well-being. I mean, even in the occupational therapy practice framework 4, health management has become its own occupation. So let me repeat that: health management is an occupation. So by this logic, wouldn’t deliberately dying to be a viable argument for being an occupation, if it is to manage and escape one’s own physical suffering that – with today’s best doctors and understanding and science and health interventions has a poor prognosis?
The article made an interesting point in saying quote, we would like to focus on people orchestrating their own deaths because it gives purpose and meaning to the fabric of their life, people for whom death represents a goal they wish to achieve for various reasons. So maybe deliberately dying can be a purposeful and meaningful occupation.
And from this opinion piece came a counter-response as well from other authors. These second authors disagree with the first saying that the original authors blurred the line between managing a natural progression of dying versus intentionally facilitating death. They state that OTs do play a vital role in the context of palliative care. Well, I can tell you that from my personal experience, this isn’t the case in real-world practice. I would love to hear from you guys in the comments if your occupational therapy practice does include the realm of palliative care.
These second authors also state that the perspectives of bioethics and disability studies must be included in this perspective with concepts such as lives worth living and ableism; as in including disabled people in the consideration of this topic. The second author’s use a counter-example of a quadriplegic man who legally won the right to die but decided to continue living because they were given appropriate social support to live in the community as opposed to a then, nursing home. So what do you think about that? Would including the voice of the disabled and their experience and perspectives necessarily change this? Does classifying deliberately dying as an occupation devalue living for a disabled person?
Personally, I don’t see what living and occupation have to do with each other, disabled or not. Aren’t we talking bout dying here, which is kind of like apples and oranges? Maybe I am not understanding the counterarguments here. And if these second authors don’t think that deliberately dying is an appropriate example of occupation, then what would be?
Of course, there is no black-and-white and easy answer and there are a lot of gray areas and it’s not like we can easily agree on a definition to include dying, I mean, we as a profession are still struggling to agree and define what occupation is. I think the key lies in the person themselves (disabled or not) and being client-centered, and what they want, at least in the context outside of suicide.
Another limitation is that this perspective from a western standpoint, from one cultural and societal view, is kind of like like using all of the other OT theories until the Kawa River model came around. And yeah, what about suicide too? What if someone does want to die because they may be hopeless and depressed? With rates of suicide rising across all age groups, should this also be included in the “new” definition of occupation as well? Very provocative stuff.
Manon Guay, Marie-Josée Drolet, Nicolas Kühne, Claudia Talbot-Coulombe, W. Ben Mortenson; What If Deliberately Dying Is an Occupation?. Am J Occup Ther July/August 2022, Vol. 76(4), 7604347040. doi: https://doi.org/10.5014/ajot.2022.047357
Laura VanPuymbrouck, Lisa Mahaffey, Amy Roder McArthur, Alisa Jordan Sheth; Response to Guay et al. (2022): The Issue Is . . . What If Deliberately Dying Is an Occupation?. Am J Occup Ther November/December 2022, Vol. 76(6), 7606050010. doi: https://doi.org/10.5014/ajot.2022.050196