Frameworks for medical rationing must be created of, for, and with the people

When a vaccine for Covid-19 becomes available — and the supply is sure to be limited — who should get it?

That depends on who you ask.

The Harris Poll released survey data in August that showed how the public believes a future Covid-19 vaccine should be administered. The results were relatively intuitive. Citizens wanted health care workers (73%), people over age 55 (71%), essential workers (60%), and first responders (56%) to receive the first doses.

This public perspective is important, yet it rarely informs the frameworks created by academics or those in government for allocating scarce medical resources like vaccines and ventilators. That needs to change. Public opinion should be taken into consideration every time issues of medical rationing arise.

Take ventilators as an example. There is currently no uniform national framework guiding medical rationing decisions for ventilator use in hospitals and emergency departments. States like New York and Washington had created crisis standards-of-care guidelines before the pandemic emerged. Others, such as New Jersey and Massachusetts, followed suit in the early stages of Covid-19.

Hospital systems often draft their own triage standards or follow the lead of other institutions. At the beginning of the pandemic, for instance, a framework developed by faculty members at the University of Pittsburgh School of Medicine outlined allocation guidelines for ventilators and critical care beds. The framework was adopted by hundreds of hospitals.

Over the years, academic bioethicists have written hundreds of papers outlining rationing frameworks for various scarce medical resources, with dozens tailored specifically to pandemics.

These institutional and academic insights are instructive, but policy conversations like these should also include the public.

In March, an international group of 10 bioethicists, legal scholars, public health experts, and others published in the New England Journal of Medicine an approach to the “fair allocation of scarce medical resources” during the Covid-19 pandemic. The authors promoted a framework, much like the University of Pittsburgh’s guidelines, that weighed competing ethical principles such as “saving the most individual lives” (meaning rescuing the highest number of people) versus “saving the most life-years” (meaning prioritizing the number of potential years preserved in each person’s life) for making rationing decisions. The article was well-researched and thought-provoking, but also controversial for its assertions, as critics argued that “saving the most life-years” would discriminate against the elderly and the disabled.

A diverse group of academics, including conservative scholar Ryan Anderson and progressive icon Cornel West, issued a rejoinder. The 20 signers took exception to guidelines that, in their view, relied too heavily on a life-years approach that in practice would favor younger patients over older ones when competing for the same scarce medical resource. Drawing upon a slippery-slope argument, the authors posed a hypothetical question about whether a ventilator should be denied to a 50-year-old and given to a 30-year-old — and thus likely preserving more life-years — or whether a 30-year-old should lose out to a 15-year-old?

These authors also posed concerns about ventilators being denied to patients with mental or physical disabilities in preference for more “able” individuals. Such concerns came to the fore elsewhere, as disability rights activists in Massachusetts persuaded the state to change its rationing guidelines soon after they were published. Activists in Alabama and Pennsylvania did the same, forcing the U.S. Department of Health and Human Services to issue multiple statements addressing these fears about disability discrimination.

The experiences of Massachusetts, Pennsylvania, and Alabama show that large-scale medical decisions are inherently political. So policymakers need to take public opinion into consideration — especially voices from communities of color and individuals earning less than the median income, who are most affected by Covid-19 — in addition to expert opinion from the medical and academic communities. Public policy should ultimately be informed by public opinion.

The Pew Research Center periodically conducts public opinion polling on bioethical issues such as embryological gene editing, human genetic enhancement, and physician-assisted suicide. These insights are informative for academics, policymakers, and the public alike. Conducting similar polling around vaccine or ventilator shortages during pandemics — while still fresh in the public’s mind — could be invaluable for policymakers moving forward, as would state-led citizen focus groups. The state of Washington provides a salient case study of doing this.

In 2018, in a series of seven public hearings, Washington state health officials asked residents to consider medical rationing dilemmas related to a potential pandemic. Residents were asked what should and shouldn’t be prioritized when deciding who should benefit from limited medical resources. The debates offered “rich discussions” about ethics and social utility among diverse populations, and ultimately informed Washington’s crisis standard-of-care guidelines. State and federal policymakers should follow the state’s example, trusting in the ethical convictions of the public.

Medical rationing is one of the most feared concepts in medicine. The phrase is too often used as a political weapon. But discussing the allocation of scarce medical resources such as ventilators and vaccines is necessary, especially amid a pandemic. By remembering the American motto of “e pluribus unum,” the opinions of the “pluribus” should be balanced alongside the “unum” of a select few so we can craft ethical frameworks of, for, and with, all Americans.

Mark E. Dornauer is a visiting fellow in health care at the Foundation for Research on Equal Opportunity.