Are terminally ill patients disabled?

By Philip Reed.

Asked to name groups of individuals who commonly face discrimination, most of us would probably come up with roughly the same list: racial minorities, people with disabilities, certain religious groups, women, and LGBTQ persons. If we have extra time to think, we might also mention heightism, sizeism, and lookism as lesser-known or lesser-acknowledged varieties of discrimination.

In my paper, Discrimination Against the Dying, I argue that we have overlooked an important group that is subject to discrimination, namely those with terminal illnesses. Dying persons face routine discrimination in law and policy on account of their dying. I call this “terminalism” and I provide four examples from health care settings: hospice eligibility requirements in the U.S., allocation protocols for scarce medical resources, right to try laws, and right to die laws.

In 2020, I published a paper in the Journal of Medical Ethics discussing one kind of objection that disability rights organizations make against assisted suicide and euthanasia. In doing so, I argued that terminally ill patients are a subset of disabled persons and that, therefore, medically assisted death laws that limit eligibility to the terminally ill (such as in the U.S.) target disabled individuals. This point felt somewhat awkward and forced—even before an anonymous referee had challenged me on it. I was not completely happy with the claim.

As I thought about the matter more, it occurred to me that, even though disability rights concerns about assisted death laws should be taken seriously, there was no need to make terminally ill patients a subset of the disabled. While there is surely frequent overlap between the two groups (since it is true that terminal illnesses do typically result in limited capacities) they are nevertheless distinct. The problem with assisted suicide laws for dying persons is not that they discriminate against the disabled as such, it is simply that they discriminate against the dying.

My thoughts about the nature of these laws and the kind of discrimination that they impose happened alongside the early stages of the pandemic when we were having a public debate about who should get scarce ventilators and other scarce medical resources. I noticed that many bioethicists were quick to argue that their allocation proposals were not instances of ableism – and yet they were willing (for admittedly understandable reasons) to restrict a scarce ventilator from persons who were near death.

I came to believe that ableism (discrimination against the disabled) was different from terminalism (discrimination against the dying). My new paper in the Journal of Medical Ethics elaborates on this distinction and tries to show why the latter kind of discrimination, which we have so far failed to recognize, is important for medical ethics and policy as well as end of life care. While we have long realized that dying persons often receive suboptimal care, we have failed to notice that they are also victims of discrimination – a distinct kind of wrong that, I think, we would do well to pay attention to and, in many instances, try to correct.

 

Paper title: Discrimination Against the Dying

Author: Philip Reed

Affiliations: Canisius College

Competing interests: None declared

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