By Alicia Ely Yamin and Ole F. Norheim
Scholarly and official statements and publications regarding human rights during the current pandemic have largely reiterated the important lessons learned from HIV/AIDS, Zika and Ebola, such as: engagement with affected communities; combatting stigma and discrimination; ensuring access for the most vulnerable; accounting for gendered effects; and limiting rights restrictions in the name of public health.
But there is a notable silence as to one of the most critical decisions that almost every society will face during the COVID-19 pandemic: rationing scarce health care resources and access to care.
The failure to engage directly with the most difficult questions of tradeoffs implies that “human rights-based approaches” and mantras invoking a “right to health” somehow allow us to avoid facing these life and death dilemmas.
This stance makes human rights principles irrelevant to some of the most pressing issues health systems are now facing. Not acknowledging the need for rationing is akin to abdication to the market, as those with power, money, privilege and other sources of status will be the ones who get access to tests, treatments, ICU beds, and ventilators.
The point of a right to health, in “normal” times as well as in crisis, is that inevitable rationing be done fairly and transparently, in accordance with democratic principles of equal concern and respect. The following three human rights-based imperatives offer public health and medical ethics guidelines with respect to rationing within our health systems.
1. Treat diverse people with equal concern and respect. The bedrock of human rights calls for vigilance against discrimination in information, testing, and treatment for COVID-19 (on the basis of gender, religion, sexual orientation, disability, race, ethnicity, and, importantly income and socioeconomic status). Equal concern and respect calls for universal access to the health system, so that everyone has equal chances for consideration, which as Spain and Ireland have just shown can be done quickly with effective political leadership.
Equal concern is also violated if a COVID-19 patient gets care by displacing others with similarly grave or more serious conditions who could benefit more.
2. Maximize benefits. If the dignity of each human being demands equal concern and respect, maximizing the clinical benefits to the greatest number of people must be our ethical starting point. Take this grim, but realistic example: If survival probability is 50 percent for one patient who needs a ventilator and 20 percent for another, it would violate equal concern to choose the patient where the expected benefit is lower.
Ranking of patients by expected benefit is not only important for access to intensive care. Maximizing benefits applies when choosing whom to test, treat or refer to hospitals. It applies to ensuring health personnel preferential treatment in pandemic situations because without them, others would likely be worse off. It applies when government officials must choose among policies to protect health system capacity, including allocations of scarce health resources among sub-national areas. And if a vaccine becomes available, health maximization would dictates that priority should be given to high-risk and vulnerable groups, because protecting them entirely from infection would yield the maximum benefit.
Health maximization is not simple to apply in practice. Critically, this imperative coexists with the overarching human rights principle of equal concern and respect as set out above. In the broader policy space, the principles of equal concern and health maximization call for buffering the unequally distributed adverse impacts of the epidemic on social determinants of health.
3. Rationing criteria must be democratically legitimated. The essence of human rights—and democracy– is that governments should be held accountable for justifying their (non) actions and the basis for their decisions (and those they regulate in the private sector).
Decisions about rationing should not be made by technical experts behind closed doors, following opaque criteria that vary across hospitals, as is occurring now. Transparency, user involvement, and public deliberation about goals, principles, and guidelines for rationing are essential for trust and legitimacy in health systems and in our broader governments.
Accepting the reality of rationing, from the micro-level to the macro-level of financing and structuring systems, in no way implies foregoing scrutiny of any given decision, policy or budget.
The public needs to understand that avoiding explicit rationing in a time of crisis can cause major loss of health in the population, and in practice is likely to favor the rich and powerful.
Talking about rationing in an open, evidence-based and responsible way can promote processes and principles that people understand as legitimate—and may produce important revisions of policy based on considerations raised, such as giving extra priority to the worst off.
Even during a crisis—especially during widespread “lockdowns”– virtual town halls and public service programming on radio call-in shows could be key tools in extending such dialogues beyond those that may be occurring between doctors and family members.
Legitimate processes reinforce democratic trust. At the same time, for people to accept rationing as legitimate in crises and beyond, people need to trust government officials—both within the health system and more broadly.
Admittedly, we face an extreme challenge in a world where governments have undermined public trust for decades. Nonetheless, if we now insist upon these rights-based imperatives, one positive outcome of the current pandemic might be that we understand better that health is a matter of democracy and health systems are fundamental social institutions. This crisis also provides an opportunity to reconsider how health rights have generally been theorized, too often untethered from democratic theory as well as the informal rules that shape how they function in health professionals’ and patients’ daily lives.
As South African Constitutional Court Justice, Albie Sachs, noted of health rights, “When rights by their very nature are shared and inter-dependent, striking appropriate balances between the equally valid entitlements or expectations of a multitude of claimants should not be seen as imposing limits on those rights . . . but as defining the circumstances in which the rights may most fairly and effectively be enjoyed.”
Alicia Ely Yamin is a Senior Fellow at Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Harvard Law School, and a Human Rights Advisor at the Bergen Centre for Ethics and Priority-Setting (BCEPS).
Ole F. Norheim is Director of the Bergen Centre for Ethics and Priority-Setting (BCEPS), University of Bergen, where he is also a professor, and an adjunct professor at the Harvard T.H Chan School of Public Health.