Resource allocation and disability rights: Growing consensus against categorical exclusions
There is growing consensus among ethical, legal, health policy experts that protocols for triage or allocation of scarce resources during a public health emergency must be improved to ensure they serve their intended goals while avoiding disadvantaging persons with disabilities or other populations. Two perspective articles in the New England Journal of Medicine address issues surrounding which criteria should and should not be considered in allocating scarce resources, and both reject the application of rigid exclusionary criteria.
- In the first of the NEJM pieces, the authors argue that policies must meet dual goals of optimizing health outcomes and protecting core values such as the equal moral worth of all persons. They recommend focusing on near-term survivability, prioritizing patients who are both most likely to die without an intervention and also most likely to survive with that intervention based on best available clinical evidence. They argue that survivability can and should be assessed independent of disability and that scoring systems should not include measures of quality-adjusted or disability-adjusted life-years due to their potential for discrimination and bias. In contrast, the authors note the appropriate (though contentious) goal of saving the most life-years, arguing that it is ethically appropriate as a tiebreaker among patients with similar clinical scoring if supported by clinical evidence and individualized assessments rather than stereotypes or generalizations.
- The authors of the second NEJM piece emphasize the role of existing anti-discrimination laws and the importance of honoring commitments to anti-discrimination principles while appropriately stewarding scarce resources during a public health emergency. The authors catalogue objections raised by disability rights advocates to various state resource allocation plans and argue that allocation decisions must be based on an individualized assessment of a patient’s prospects of benefiting from treatment. This means rejecting the application of categorical exclusionary criteria, particularly those based on disability, as well as the incorporation of any imposed calculations of quality of life, which are heavily influenced by biases regarding disability. In contrast to the first NEJM piece, the authors argue that long-term life expectancy should also be avoided as a criteria due to uncertainty and bias, but they do acknowledge that consideration of near-term prognosis is acceptable and commonly applied in other scarce resource contexts, such as organ transplantation.
Additionally, this article in American Journal of Bioethics, which shares two authors with the second NEJM perspective, evaluates various state crisis standards of care (CSC) plans from ethical, legal, disability, and implementation perspectives. The authors conclude that an optimal CSC policy for scarce resource allocation (including use of cardiopulmonary resuscitation) during a public health emergency should not apply categorical exclusions.
Allocating scarce inpatient medications: Guidance for who should receive priority for existing and future drug interventions
There are currently no drugs with demonstrated efficacy in treating or preventing COVID-19, though the FDA has issued emergency use authorizations allowing drugs that are otherwise unapproved (remdesivir) or approved for other conditions (hydroxychloroquine) to be used based on limited preliminary evidence of possible efficacy. While many hope for rapid development of more effective drugs or treatments in the future, even in the best case scenarios allocation of both existing and newly developed drugs will pose ethical and policy challenges regarding who should receive initial allocations.
This JAMA viewpoint offers ethical principles to guide decision-making for current and future drug interventions for COVID-19 based on goals of:
- saving the most lives, reducing duration of hospitalization or mechanical ventilation, and preventing new cases
- decreasing disparities in case-fatality rates (e.g., due to social determinants of health)
- strengthening the community’s ability to respond by protecting essential workers
- preserving supplies of existing medications for patients with chronic illnesses who depend on them
- reserving sufficient supplies of the drug to conduct additional well-designed clinical trials (to save more lives in the long run with a stronger evidence base).
Toward those ends, the authors offer the following practical recommendations:
- Allocation should be evidence-based with priority to patient groups shown to benefit in rigorous clinical trials (e.g., those who meet study inclusion criteria) and evidence should be reviewed continuously
- Prioritization should not exclude patients based on factors such as age, disability, race/ethnicity, gender, or perceived quality of life
- For existing FDA-approved medications, patients already receiving the drug for other serious conditions (based on good clinical evidence) should continue to receive it
- Base judgments on which patients might benefit the most or least on rigorous evidence and avoid making inferences about the benefits of a scarce drug based on anecdotal experience, observational data on disease trajectory, or post hoc subgroup analyses of small trials
- Use random allocation (e.g., lottery) rather than first-come, first-served, and potentially give some priority to essential workers within lottery
- Provide clinicians support in difficult discussions with patients who do not receive the drug and with their families.