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Disability Bias in Health Care

Unearthing the influence of bias on health care policies and clinical decision-making

Oct 20, 2021   Blog Posts   Health
Disability Bias in Health Care

COVID-19 health care policies have exposed how bias can perpetuate disparities for patients with disabilities

Clinicians can be powerful change agents for promoting disability rights. But to do so, they must overcome disability biases that are all too prevalent in clinical practice and contribute to entrenching long-standing health care disparities experienced by persons with disabilities.

HPOD Executive Director Professor Michael Ashley Stein and Dr. Omar Sultan Haque, a faculty member at the Harvard Medical School's Program in Psychiatry and the Law, describe how various forms of disability bias can affect clinical practice in their Health and Human Rights Journal article. For example, "ineffectual bias" manifests when clinicians assume patients with disabilities possess lower levels agency and competence than non-disabled patients with the same presenting medical complaint and thus treat them paternalistically. "Fragility bias" arises when clinicians perceive that patients with disabilities suffer more than non-disabled patients who present with the same medical facts, which can lead to more conservative treatments. Conversely, "catastrophe bias" causes clinicians to project more suffering onto patients with disabilities than patients actually experience based on the clinicians' assumptions that patients' disabilities diminish their quality of life, inducing clinicians to “give up” sooner than they would for non-disabled patients.

Clinical decisions made in rapid and emergency situation are especially susceptible to these and other forms of disability bias. Indeed, the far-reaching impacts of clinicians' disability bias were especially evident amid the early global response to the COVID-19 pandemic. Indeed, some academics have openly advocated for devaluing the lives of persons with disabilities as a matter of public policy as part of the COVID-19 response. Such views were not mere idle chatter. At the start of the COVID-19 pandemic in the United States, for example, the state of Alabama explicitly recommended that patients with intellectual and developmental disabilities be viewed as ineligible for ventilators. Other states, including Washington, Kansas, Tennessee, Pennsylvania, Utah, New York, Oklahoma, North Carolina, and Oregon, followed suit by adopting triage and treatment guidance that similarly deprioritizes various categories of persons with disabilities.

Fortunately, Alabama's guidance and that of other states, were amended following complaints to the U.S. Office of Civil Rights and advocacy by disability rights activists. A recent study in the Journal of Health Politics, Policy and Law by Professor Stein, HPOD Senior Associate Ari Ne'eman, and colleagues analyzes how many states' triage protocols that determine how to allocate scare lifesaving health care resources, commonly called Crisis Standards of Care plans (CSCs), changed in response to disability rights advocacy. Their study of 35 states found that disability rights views were not well represented in CSCs that were either not updated or updated early in the pandemic. However, states that revised their plans later in the pandemic were more aligned with advocates' priorities. Notwithstanding some changes, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice.

Disability bias in health care policy and practice has by no means been unique to the COVID-19 pandemic. For instance, the public health construct of DALYS (disability adjusted life years) “neutrally” devalues the lives of persons with disabilities relative to the lives of those without disabilities. Along the same lines, commonly accepted norms and practices lessen the priority of persons with disabilities for essential procedures, such as organ transplants. Otherwise laudable programs, such as United Nations HIV/AIDS programming, neglected for decades to include persons with disabilities. Finally, clinical bias disproportionately affects persons with disabilities who occupy racial, gender, and sexual orientation intersections.

Thus, in order to remediate the health care disparities experienced by persons with disabilities, clinicians and policymakers alike must be aware of and militate against the effects of disability bias on their decision-making.