Philip Reed (Canisius College), “Discrimination Against the Dying”

Forthcoming, Journal of Medical Ethics

By Philip Reed

In this haunting image from the height of the pandemic, a patient infected with Covid-19 is comforted not by an actual human being but by a pair of latex gloves filled with warm water.

While undergoing a terminal illness is difficult enough in normal times, it became more difficult in the pandemic, as receiving appropriate care and accessing visitors involved significant obstacles. While such obstacles amounted to mistreatment of the dying, they did not involve discrimination. This is because discrimination against a class of persons involves worse treatment of that class compared to those who are not in that class. In the obstacles that the dying faced in accessing both care and visitors during the pandemic, they were treated the same as everyone else. The warm water gloves were given to dying patients as much as other sick patients who were not dying. Suboptimal treatment as such is not discrimination.

Nevertheless, the dying did face a unique form of discrimination in the pandemic, namely in the allocation of scarce medical resources. It was common for protocols for the distribution of ventilators, for example, to explicitly discount people who were near death. Here, the terminally ill faced worse treatment than they would have faced if they were not terminally ill.

From ableism to speciesism to lookism, there is no shortage of emerging kinds of discrimination that vie for our limited attention. Nevertheless, I propose that we have ignored an important one: discrimination against the dying. I dub this “terminalism” since it amounts to discrimination against patients who have been diagnosed with a terminal illness. In addition to methods for the allocation of scarce medical resources, I identify in the paper three other contemporary examples of terminalism from health care settings: hospice eligibility requirements, right to try laws, and right to die laws.

It might seem obvious, but there is no way to allocate scarce resources in ways that avoid discrimination. If I have 2 ventilators and 5 patients who need them, I will discriminate against 3 patients on some basis. Allocation is a zero-sum game. The question is whether I will discriminate in a way that is morally relevant.

In the literature on discrimination, it is common to say that in order to be a target of discrimination, one has to be a member of a socially salient group. This means roughly that membership in the group is relevant to a wide range of social interactions.

If I discriminate against 3 patients on the grounds that they are disabled, I have discriminated in a morally relevant way because being disabled structures a wide range of social interactions. However, if I discriminate on the basis of a lottery, then I’m involved in morally innocuous discrimination: being the loser of a lottery does not structure a wide range of social interactions. Likewise, “arriving to the hospital after others” does not identify a socially salient group.

Suffering from a terminal illness, however, does place oneself in a socially salient group. Terminal illnesses structure how persons spend their time, who they converse with, and whether they will participate in certain institutions. Discrimination against the dying is thus a morally relevant kind of discrimination. (This does not mean, however, that all forms of discrimination against the dying are unjustified.)

Bioethicists understandably want to avoid discrimination. For example, Govind Persad, Alan Wertheimer, and Ezekiel Emanuel defend allocation principles that explicitly prioritize younger people yet remarkably claim that their principles are not ageist. They believe they avoid ageism because they don’t endorse differential treatment on the basis of “stereotypes or falsehoods.” This is a very limited understanding of discrimination! No one wants to be an ageist or an ableist.

But even if our allocation principles were plausibly to avoid ageism and ableism, I contend that there is another kind of relevant discrimination at play that has been almost entirely overlooked. Whether terminalism garners the attention of ethicists, health care providers, and policy makers remains to be seen. For myself, I believe it is morally significant that the dying, already familiar with suboptimal treatment, face the additional burden of being victims of discrimination.