People with disabilities are worth saving, too: Ensuring healthcare equity during the COVID-19 pandemic

By Molly M. King

Before we face another swell of the pandemic, we have the opportunity as a country to take stock of early lessons learned about the vulnerabilities of our nation’s healthcare system. As our nation celebrates the 30th anniversary of the Americans with Disabilities Act, we have other shortcomings to reflect on, as well.

Thanks to the quick action by disability rights activists, the early rationing of ventilators for people with disabilities by half of U.S. states is no longer permitted. This overt categorical discrimination was ended by guidance from the Department of Health and Human Services Office of Civil Rights. However, we are now left with a more insidious and formidable foe influencing resource allocation: avoiding implicit biases against people with disabilities and other vulnerable groups. If COVID-19 cases surge beyond available capacities this fall or winter, we need resource distribution methods that are not biased against people with disabilities and other vulnerable groups.

Inequality, status, and bias

But how do we decide who’s life is worth living? There are several other ways these difficult resource allocation decisions could be made. Ethical maxims are available to decide who ought to be saved, including “save the most lives”; “save the sickest”; “save those who have waited longest”; or “first come first served.” Each has its ethical problems. For instance, a first-come, first-served approach might deny treatment to those who do not have equal information or live in rural communities. Researchers have engaged communities in developing other guidelines for prioritizing medical services. Current widely adopted practice emphasizes prioritizing patients based on “survivability,” variously defined as living to hospital discharge, one year after discharge, or long term. Recent proposals tweak these ideas to prioritize “patients who are most likely to die without a ventilator yet most likely to survive with one.”

Moral philosophers can evaluate these guidelines in principle, using different ethical frameworks. As a sociologist, I study systemic and individual biases, both of which make the implementation of some ethical principles much more problematic than others. Disability, race, gender, and age all influence our prospects for employment, housing, education, interpersonal relations and virtually every outcome social scientists have measured. As a result, we associate societal value with these characteristics. These valuations take on a life of their own; we begin to believe that high-status people are more worthy of resources, creating and recreating inequalities across institutions, including health. Social inequalities in the U.S. currently make it impossible to avoid other biases, in practice. So how can we justify allocating resources based on any social characteristic or perceived likelihood to recover?

But our healthcare system currently must allocate scarce resources all of the time, and the systematic inequalities of race, employment, and ability are built into these decisions. Our healthcare system ties health insurance availability and quality to employment. Inequality in health outcomes directly decides whose life is worth living, as thousands die every year from a lack of affordable healthcare in the United States. We are currently letting these decisions be made based on who has health insurance. These (often unconscious) decisions – and their associated inequities – are much easier to see when we are evaluating the distribution of a single resource: ventilators.

Deciding who gets resources in a pandemic

How will we avoid these status associations in healthcare decisions when it comes to allocating ventilator resources for COVID-19, if we find ourselves in a situation where we must choose among patients? How do we avoid common stereotypes, the cultural norms which tell us that white, able-bodied men have higher status? Beyond this, certain populations are more prone to have other underlying conditions. What if someone brings their own ventilator, which they use daily, to the hospital? Will it be deemed more important for someone else and taken from the ventilator user? Doctors often assess the quality of life of people with disabilities as lower than that reported by people with disabilities themselves, and make decisions about medical procedures that violate the civil rights of individuals with disabilities. (Some expert guidelines recommend against incorporating quality of life estimates into COVID-19 care decisions, for this and other reasons.) But regardless of actual need, pre-existing stereotypes might cause healthcare workers to perceive those with chronic conditions or disabilities as needing disproportionate amounts of resources – or as unworthy of them.

Needed: a policy plan with community input

Our country needs to plan for the potential situation where there are more people who both need and would benefit from scarce resources than what are available. But who gets to decide who lives and who dies? In an act of prescience, the Center for Disease Control Ethics Subcommittee released a document in 2011 on Ethical Considerations for Decision Making Regarding Allocation of Mechanical Ventilators during a Severe Influenza Pandemic or Other Public Health Emergency. A nationwide public health crisis such as ours requires “all institutions within a functional medical referral area to adopt uniform triage plans for access to ventilators,” an endeavor which demands local – if not nationwide – decision criteria and leadership. They recommend these decision-making methods include broad and diverse public engagement, procedural justice, and “particular attention to historically marginalized and potentially vulnerable groups.” One of the communities that needs to be included in this process are people with disabilities, as they continue to be disproportionately affected by the pandemic.

Thirty years ago this summer, the passage of the Americans with Disabilities Act started a path toward greater respect of disability in the medical profession. As early as the Declaration of Independence, the U.S. embraced a rights-based ethic. While the realization of this aspirational equality is a work in progress, non-discrimination is at the heart of the modern American ethos.

Though we are not yet being forced to make tough decisions about the allocation of ventilators, other countries have faced them. And this is not the first time we have faced these types of questions in our country. Whether we will need the answers for COVID-19 or another national or global challenge, only time will tell. But as we are currently seeing a resurgence of COVID-19 cases, the issue of resource distribution is likely to become relevant again. Without clear criteria, developed with public engagement, bias will creep in. It always does.

Thirty years after the passage of a landmark civil rights bill, we should not still have people with disabilities fearing for their lives because of unequal treatment. It is important that we develop guidelines now that are consistent not only with our laws and our values as a country, but also with our understanding of discrimination and bias, to protect our most vulnerable commnuities. The soul of our nation depends on it.

 

Author: Molly M. King

Affiliations: Department of Sociology, Santa Clara University.

Competing interests: None

Acknowledgements: The author wishes to thank Josie Badger, Charles Binkley, Christof Brandtner, Rita King, and Armand Rundquist for their helpful comments that led to the development of this piece.

Social Media account of author: Twitter: @mollymking

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