Disability, Ethics, and Health Care in the COVID-19 Pandemic

Maya Sabatello, LLB, PhD; Teresa Blankmeyer Burke, PhD; Katherine E. McDonald, PhD; Paul S. Appelbaum, MD

Disclosures

Am J Public Health. 2020;110(7):1523-1527. 

In This Article

Rationing

The issue of rationing medical goods and services is a controversial topic in the COVID-19 pandemic. The debate has been particularly relevant for people with disabilities, with several states reportedly having developed triage policies that recommended disability-based exclusion from lifesaving treatments. Washington State, for example, excluded patients with "loss of reserves in energy, physical ability, cognition and general health," while Alabama's (now reversed) policy excluded patients with "severe or profound mental retardation," "moderate to severe dementia," and "severe traumatic brain injury."[22] (p2) Following complaints filed by disability rights organizations about these emerging discriminatory schemes, the US Department of Health and Human Services' Office for Civil Rights (OCR) issued an instructive bulletin on March 28, 2020, reaffirming the continued application of relevant disability laws in the pandemic to medical decisions relating to people with disabilities.[23] Although reassuring, questions about rationing determinations and disability remain, especially as several similar complaints remain under review.

Rationing requires difficult decisions about allocation of scarce resources under conditions of extreme time pressure and limited data. Ethicists have long considered the values underpinning rationing decisions, and, although maximizing the number of saved lives is commonly the decisive goal,[24–26] there are varying views about how to operationalize it and balance multiple, competing ethical and societal values. Another key question is how equality and nondiscrimination on the basis of disability are to be interpreted in rationing decisions.

Part of the challenge is that existing guidelines are often drafted by medical experts with little input from people with disabilities. Whether and how disability perspectives about resource allocation are incorporated into the guidelines is unclear. While the absence of disability voices on such drafting committees may result in unconscious bias[27] being introduced into the guidelines, the presence of 1 person with disabilities among many clinicians on such committees may be insufficient to affect the outcomes (as has occurred with some community members serving on institutional review boards[28]). Inconsistent application and interpretation of existing standards may similarly result in discriminatory outcomes for people with disabilities. For example, New York State's 2015 Ventilator Allocation Guidelines[26] (currently under review by the OCR) could be interpreted to allow the removal and reallocation of personal ventilators of people using them regularly if they arrive at a hospital from chronic care facilities and are deemed ineligible for treatment.[26] Despite clarification that such an outcome was not intended by the drafters of the guidelines,[29] worry is fueled by the absence of a clear, publicly available list of treatment-exclusion criteria and a history of disability discrimination in society, including health care.[30]

Rationing based on prognosis for survival—a reasonable criterion in a pandemic—similarly raises distress among people with disabilities. Common presumptions of disabilities as implying adverse health outcomes[5] may result in inaccurate or biased prognoses. Subjective quality-of-life judgments may similarly enter rationing decisions and result in discriminatory outcomes. Key gatekeepers, including emergency department clinicians, nurses, and medical students, often rate the quality of life of people with disabilities much lower than do the individuals with disabilities themselves, and such biases have an impact on medical futility decisions.[31]

To prevent discrimination, health care facilities should explicitly distinguish between disability status (e.g., deafness and intellectual disability) and comorbidities that have been shown to affect survival (e.g., end-stage cancer) as a criterion for denying lifesaving treatment of COVID-19. They should endorse a clear, unbiased process to assess patients individually, ensuring that allocation decisions are based solely on objective medical evidence for likelihood of survival from COVID-19, rather than on perceived quality of life associated with disability. Transparency in rationing decisions is essential for maintaining public trust in the medical response to this pandemic, particularly given the history of disability discrimination, including the connection between eugenics and the medical profession.

Measures to safeguard against biases erroneously affecting rationing decisions are also needed. As initial assessments of patients are likely to affect subsequent decisions, it is crucial that they be re-evaluated by additional clinicians. Although disability training for clinicians is impractical at this time, educating members of ethics committees (who are likely already involved in the COVID-19 response) and triage committees (if established) and creating diverse, interdisciplinary committees can be helpful. Triage committees are intended to "buffer" clinicians from the distress over decisions that contravene their patients' best interests (e.g., ventilator withdrawal) by entrusting "respected clinicians and leaders among their peers and the medical community" with rationing decisions.[25] (p2)

As regular contact with people with disabilities has been shown to reduce biases, triage committees should include members of health disciplines such as rehabilitation that hold more optimistic views of prognosis and quality of life of patients with disabilities.[32] Including health care providers with disabilities, especially those who are also from racial/ethnic minorities, would be similarly invaluable. The prevalence of disabilities is higher among racial/ethnic minorities, and existing (limited) data suggest that health disparities are compounded among people with disabilities who belong to underserved racial/ethnic groups.[5,6] Moreover, given the high stakes for people with disabilities in rationing decisions, representatives of organizations of people with disabilities or disability rights experts should be consulted in rationing decision-making processes. Although the need for diverse members of triage committees may add complexities, it could facilitate unbiased outcomes and increase trust in the decision-making process.

processing....