The treatment of disability under crisis standards of care: An empirical and normative analysis of change over time during covid-19

Ari Ne'eman, Michael Ashley Stein, Zackary D. Berger, Doron Dorfman

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

Context: COVID-19 has prompted debates between bioethicists and disability activists about Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care. Methods:We examine CSCs in 35 states and code howthey approach disability, comparing states that have revised their plans over time to those that have not. We offer ethical and legal analyses evaluating towhat extent changes to state policy aligned with disability rights lawand ethics during the early pandemic and subsequently as stakeholder engagement grew. Findings: While disability rights views were not well represented inCSCs that were not updated or updated early in the pandemic, states that revised their plans later in the pandemic were more aligned with advocate priorities. However, many CSCs continue to include concerning provisions, especially the reliance on long-term survival, which implicates considerations of both disability rights and racial justice. Conclusions: The disability rights movement's successes in influencing state triage policy should inform future CSCs and set the stage for further work on how stakeholders influence bioethics policy debates.We offer thoughts for examining bioethics policy making reflecting the processes by which activists seek policy change and the tension policy makers face between expert delegation and mediating values conflicts.

Original languageEnglish (US)
Pages (from-to)831-860
Number of pages30
JournalJournal of Health Politics, Policy and Law
Volume46
Issue number5
DOIs
StatePublished - Oct 1 2021

Keywords

  • Bioethics
  • COVID-19
  • Crisis Standards of Care
  • Disability rights
  • Health law

ASJC Scopus subject areas

  • Health Policy

Fingerprint

Dive into the research topics of 'The treatment of disability under crisis standards of care: An empirical and normative analysis of change over time during covid-19'. Together they form a unique fingerprint.

Cite this