As a global public health crisis, COVID-19 highlights existing inequalities and injustices for vulnerable populations, especially for persons with disabilities. Whether the issue is the allocation of treatment resources, like ventilators or vaccines, or triage decisions regulating access to care, the stress that COVID-19 places on medical infrastructures leads to discussions about the best way to distribute health care resources in a context where the demand for those resources exceeds their supply and highlights the moral dangers associated with using "quality of life" measures to determine who receives limited medical treatments and who does not. In the next few paragraphs, I will describe the moral framework associated with health care rationing, namely, distributive justice, explain how rationing relates to the distribution of medical goods and services, and discuss why health care rationing is a particular concern for persons with disabilities.
Every society follows economic, political, and social rules that dictate how each member of the society benefits from (or is burdened by) what the society has to offer. These rules are not natural; human beings make them, so they change from time to time and place to place, and in every case the distribution of the benefits and burdens a society has to offer affects people's lives for better or worse. We call principles about the best way to distribute a society's resources "distributive justice." Issues like income inequality (who makes what amount of money for which kind of work?), food insecurity (how do people get enough good food to eat?), education policies (who can receive appropriate quality education?), tax laws (how much of the product of our work belongs to others and why?), and medical care (who has access to what quality of medical care?) are all issues of distributive justice--concerns about the fabric of social character that are not merely "political" or "economic."
Sometimes the scarcity of health care resources causes a society to put special rules into place that limit the distribution of those resources beyond what is typical. We call this practice "health care rationing." In the United States, access to health care is typically determined by a patient's ability to pay for the resources, whether through insurance, out-of-pocket payments, or government assistance. In this sense, health care rationing is always occurring, because different people are more or less able to pay for health care resources.
But health care rationing also occurs in special circumstances where the necessary resource is extremely limited. In the early weeks of the COVID-19 pandemic, for instance, as hospitals were overwhelmed with gravely ill patients, decisions about who would receive access to the few available respirators had to be made. Because the demand for respirators was vast in comparison to the supply, there was no way to distribute the resource equally to each patient in need--even when those patients were equally able to pay for the care. Consequently, hospital staffs had to assess which patients were most likely to benefit greatly from being put on a respirator and distribute the resources according to those assessments. Those assessments are never neutral, and despite attempts to follow procedures that make the assessment as transparent, understandable and fair as possible, they are to some extent subjective and therefore affected by bias, whether explicit or not. A similar scenario is likely to unfold as an effective COVID-19 vaccine is distributed in the coming months because the demand for the vaccine is likely to vastly overwhelm the vaccine's supply, at least initially.
Recognizing the role bias plays in access to health care is critical because it shows that rationing is not just a function of the scarcity of the resources in question, but also prejudice at an individual level and, perhaps more significantly, by systemic and institutional decisions taken at a societal level about the principles of distributive justice. In consequence of such decisions in the US, in most cases white, male, straight, and typically abled patients are more likely to receive health care resources than their peers from other demographic groups. Correlatively, people in marginalized and underrepresented groups, including many persons with disabilities, experience relatively limited access to health care resources in general and particularly limited access in circumstances like those surrounding the COVID-19 pandemic.
Persons with disabilities are even more likely than members of other underrepresented and marginalized groups to be adversely affected by health care rationing, because disability is conceptually associated with health to a greater degree than other differences and disadvantages like race or ethnicity, gender, and economic status. Whether or not the strong linkage between disability and health is fair or accurate at the descriptive level, it exerts considerable pressure at the normative level of distributive justice. If disability is perceived as involving a health-related impairment, and especially if that health-related impairment is further associated with a lower quality of life than that experienced by their typically-abled peers, then every person with a disability enters into any health care scenario at a disadvantage when decisions are made about who is likely to benefit most from a scarce health care resourc
In summary, any just society has to distribute its resources to its members in equitable and fair ways. Because health care resources are limited, health care rationing is always occuring. But, because of systemic bias and personal prejudice, persons with disabilities always experience the negative consequences of health care rationing in disproportionate measure when compared with their typically abled peers. A crisis like the COVID-19 pandemic both throws into high relief these already-existing inequities and threatens to exacerbate them. But, just to the extent that inequities like those attendant upon health care rationing are now in the public consciousness, we have an unparalleled opportunity to address and change them.
For further reading:
Bickenbach, Jerome. "Disability and Health Care Rationing." The Stanford Encyclopedia of Philosophy. Spring 2016. Ed. Edward N. Zalta. URL = <https://plato.stanford.edu/archives/spr2016/entries/disability-care-rationing/>.
Chen, Bo, and Donna Marie McNamara. "Disability Discrimination, Medical Rationing and COVID-19." Asian Bioethics Review (September 2020): 1-8. doi:10.1007/s41649-020-00147-x.
Lamont, Julian and Christi Favor. "Distributive Justice," The Stanford Encyclopedia of Philosophy. Winter 2017. Ed. Edward N. Zalta. URL = <https://plato.stanford.edu/archives/win2017/entries/justice-distributive/>.
Alex Sider is the Harry and Jean Yoder Scholar in Bible and Religion and Director of Peace and Conflict Studies at Bluffton University. He and his family live in Bluffton, Ohio and attend First Mennonite Church, Bluffton.