By Yolanda Bustillo and Rachel Perler
Amid the present surge of the coronavirus pandemic, it is crucial that disability rights are a factor in the development of triage protocols.
During the last week of December, the CDC recorded a record of 225,269 new coronavirus cases and 118,948 total hospitalizations. Health care systems across the country have predicted that they soon may face shortages of ventilators, personal protective equipment (PPE), and other limited resources.
In Utah, for example, hospital administrators have implemented informal triage protocols that prioritize patients based on health status, clinical factors, and the time sensitivity of their needed procedures. Hospitals in California have similarly begun rationing care.
If these dire circumstances worsen, hospital systems may apply triage protocols that deviate from best practices and impermissibly discriminate against people with disabilities.
Disability rights advocates have warned that triage policies might result in unlawful discrimination against people with disabilities. It is neither morally nor legally permissible for medical personnel to deny life-sustaining care on the basis of stereotypes about disability.
To prevent unlawful discrimination against people with disabilities, federal agencies should issue a detailed, nationalized model triage policy and encourage state adoption of such guidance. Such guidance should help prevent disability discrimination by providing specific protections, delineating individualized assessments, and prohibiting discriminatory exclusions.
“Ruthless Utilitarianism”: Disability Discrimination in Early Triage Protocols
In the spring of 2020, as health care systems across the country prepared to respond to rationing decisions in the COVID-19 pandemic, many of the earliest triage guidelines and policies adopted by hospitals called for categorical discrimination against people with disabilities.
In Alabama, the Department of Public Health’s first iteration of triage guidance would exclude patients with “severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury” from receiving mechanical ventilation if demand exceeded supply. However, none of these exclusions were supported by empirical data regarding survival rates.
While Alabama’s triage plan directly excluded certain disabled people from life-sustaining care, other states adopted triage protocols that applied quality of life assessments that resulted in disability discrimination. A person with cystic fibrosis, for example, could have been denied a ventilator under early triage protocols in Utah or Louisiana based on her “estimated survival,” despite a lack of evidence that she could not overcome coronavirus and return to her ordinary life.
States have also used qualify of life assessments in triage protocols to potentially deny access to ventilators to people with oxygen dependency, mental illness, and HIV. None of these assessments were supported by medical evidence and these disabilities have not been shown to be associated with a decreased likelihood of survival.
Triage protocols that discriminate on the basis of quality of life judgments are ethically suspect. Disability rights activists protested that triage protocols that rely on subjective quality of life judgments fail to recognize the human dignity of disabled people. In particular, quality of life judgments systematically undervalue the quality of life of disabled people, an issue that is exacerbated further by the underrepresentation of disabled persons among those making quality of life assessments. And disability rights activists argue that these policies are the product of longstanding medical paternalism towards the disabled. Where triage protocols are created without the input of disabled people, they violate the core philosophy of the disability rights movement: nothing about us without us.
In addition to these ethical flaws, discriminatory triage protocols may violate federal antidiscrimination laws, such as the Rehabilitation Act, the Americans with Disabilities Act (ADA), and the Affordable Care Act (ACA). While these statutes contain provisions that expressly protect people with disabilities from discriminatory treatment in healthcare, some state protocols imposed procedures that contravened these federal protections.
For example, those who rely on ventilators due to a chronic condition, such as chronic obstructive pulmonary disease or acute asthma, may be denied treatment both for COVID-19 and other medical needs. Former Kansas guidelines illustrate the point, since they endorsed the removal of “ventilators from people who use them for a chronic condition who are judged lower priority, in order to give them to other individuals.” In light of these deficiencies, many of the earliest state triage guidelines could not withstand legal challenges.
While many states revised their triage guidelines to include “individualized assessment” and prohibit “quality of life” assessments, ethical and legal questions remain. For example, what should constitute “objective medical evidence,” and how can “individualized assessment” overcome the problem of implicit bias against the disabled? Personnel are counseled to make “individualized judgments” without relying on bias against disability. In the absence of clear, standardized guidelines, even well-meaning health care workers may exhibit disability bias without knowledge or intent.
In practice, HHS Office for Civil Rights (OCR) guidance affirmed disability rights advocates’ claims that triage protocols rely on “stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth.’” The guidance also suggested that even ostensibly neutral metrics, like number of lives saved or years of life saved, might incorporate unconscious bias against persons with disabilities. It remains to be seen, however, whether this guidance will mitigate the influence of disability bias on triage decisions.
Recommendations to Maximize Equity
The discriminatory impact of early coronavirus triage protocols and the inadequacy of federal remedies present a clear lesson: we need a national policy that provides for efficiency, predictability, and fairness to all patients, regardless of disability status.
The primary goals of federal triage guidance should be to maximize near-term survival and the total number of life-years saved. These priorities should be weighed within the context of ensuring meaningful access for all patients, adjusting for the disadvantageous effects of social inequalities, and without relying on stereotypes.
While triage policies that take into account likelihood of survival in the immediate future may disadvantage people with certain disabilities, there are ways to mitigate this disparate impact.
Consider the University of Pittsburgh’s Model Triage Policy, which calls for triage teams to assess near-term survival when deciding how to allocate ventilators. The policy aims to maximize life-years, but caps life expectancy considerations at the 5-year prognosis. To consider total life expectancy would unfairly disadvantage people who experience social inequities that diminish life expectancy. Social determinants of health include economic stability, access and quality of education and healthcare, safe housing and neighborhoods, and discrimination. Depending on environmental conditions, one’s health, well-being, and quality of life may suffer. Thus, the policy minimizes the disadvantageous effects of disability beyond the 5-year prognosis, because longer-term life expectancy considerations do not adequately account for the effects of social determinants of health. Federal guidance should mirror these policy priorities.
Since most hospital systems have not yet had to implement their problematic protocols, there is still time to correct them. To ensure that implicit bias does not result in discrimination against people with disabilities, it is important that federal agencies issue more specific guidance that applies the OCR’s normative commitment to disability-neutral triage. It is also crucial that people with disabilities have a seat at the table in designing such guidance.
The need to excise disability discrimination from triage protocols is a lesson from the pandemic that we ought to carry forward. So, too, is the need to establish standardized federal guidelines. Indeed, with the United States experiencing another surge in the COVID-19 pandemic, we might need to put these proposals into practice sooner than we think.
Yolanda Bustillo is a JD candidate at Yale Law School and a Symposium Editor for the Yale Journal on Regulation. Her work focuses on racial, economic, and health disparities.
Rachel Perler, MPH, is a JD candidate at Yale Law School, a Fellow at the Solomon Center for Health Law and Policy, and an Articles Editor for the Yale Journal of Health Policy, Law, and Ethics. Her work focuses on public health law, health disparities, and bioethics.