Navigating the Borderland Between Clinical Medicine and Civil Rights Law During the COVID ‐19 Pandemic

Authors

Abstract

Early years of the COVID-19 pandemic saw unprecedented healthcare resource scarcity, forcing policy makers and hospital systems to respond with guidelines and protocols for allocating life-saving resources. Early schemas for rationing ventilators in crisis capacity settings included factors such as the Sequential Organ Failure Assessment score and long-term survivability that were critiqued by civil rights advocates as disadvantaging older adults, people with disabilities, and racial/ethnic minority groups [1, 2]. Revised protocols, focused on allocation according to the likelihood that scarce resources could support short-term survival, more closely aligned with disability rights law [3]. These planned triage protocols were only explicitly activated in a small number of jurisdictions, but practicing clinicians nonetheless reported contending with dire situations of resource scarcity in a range of settings across the country. To better understand real-world institutional response to scarcity during the COVID-19 pandemic, Ennis et al. conducted a qualitative study of the experience of local and regional healthcare leaders who were positioned at the intersection of clinical practice and public policy [4]. Narratives include examples of extraordinary cooperation, selfless efforts, and creative clinical adaptation that likely saved lives. However, participants also described haunting experiences of being forced to triage life-saving resources as well as more implicit rationing by nudging patients to accept palliative care in lieu of more resource-intensive treatments that would have been recommended in the course of usual care. Rationing based on some of the criteria that clinicians resorted to using as well as the effects of implicit biases regarding perceived patient quality of life can be disproportionately borne by older adults and people with disabilities [5]. Healthcare decisions and policies are shaped by both clinical factors and individual or societal values. “Empirical judgments” about pathophysiology or technical effectiveness of treatment options are largely recognized to be within the realm of clinician discretion. The law confers wide authority to clinicians to make these types of decisions [6]. Other “normative judgments” rely heavily on individual or societal values for which clinical expertise does not necessarily confer authority (Table 1). Civil rights law, representing an end-product of democratic processes, offers more relevant guidance in making these value-based decisions. However, in practice, there can be ambiguity or disagreement about whether healthcare protocols or policies are more appropriately governed by norms of clinical deference or civil rights jurisprudence. For example, in considering requests for potentially inappropriate therapy, clinicians may determine a treatment to be quantitatively futile—that the treatment is unlikely to have its intended medical effect—or qualitatively futile—that the treatment may extend life, but is unlikely to confer any benefit based on the clinician's judgment of a patient's quality of life. While clinicians may perceive both judgments to be empirical, disability advocates would argue that the latter involves a normative judgment that falls outside of clinician discretion. Indeed, under recent federal rulemaking under Section 504 of the Rehabilitation Act, judgments of qualitative futility constitute disability discrimination [3, 7]. Does the treatment work? Is the patient likely to survive the current episode of care? Who should receive access to treatments? How should treatment be prioritized when resources are limited? When there is disagreement about which set of principles are authoritative, different groups may have a natural preference to adopt a policy system that is maximally friendly to their own values and interests (a concept termed “venue shopping” in political science [8]). In other words, in determining whether particular decisions should be viewed primarily through a clinical or civil rights lens, clinicians may be naturally inclined to assume the primacy of empirical (rather than normative) judgments. Clinical training and practice cultivate clinical intuition around how to best optimize outcomes. However, this intuition, when applied toward selection between individuals, may result in a system of rationing based on considerations—such as assessments of quality of life—that are prohibited under civil rights law, the framework that should govern normative decision-making [3, 9]. During the COVID-19 pandemic, regional declarations of crisis capacity and clearly articulated protocols for decision-making were intended to make the reality of scarce resource allocation explicit and reinforce the relevance of civil rights law in guiding normative judgments. While such protocols often required substantial revision to align with civil rights law, they nonetheless offered a transparent mechanism for how decisions would be made and enabled external scrutiny and evaluation as to whether hospital activities aligned with civil rights requirements. However, crisis declarations were rarely invoked. Further, rapidly shifting practice and unanticipated scenarios meant that the distinction between empirical and normative questions was rarely cleanly articulated. Clinicians were frequently put in the position of having to make these distinctions independently, both because they had access to real-time information about a local setting of healthcare scarcity and also because the ability to identify which questions lie beyond the realm of clinical judgment often requires this very clinical judgment. Rapid communication between clinicians and leadership could result in dissemination and protocolization of these effective practices [10, 11]. In these cases, institutional bioethicists could help to identify normative components of new protocols and better align these with established ethical frameworks.

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