Influence of community and culture in the ethical allocation of scarce medical resources in a pandemic situation: Deliberative democracy study

Abstract

Background: Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective: Given the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels? Methods: Research using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others’ views. Results: Participants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks. Conclusions: Maryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage.