TY - JOUR
T1 - The treatment of disability under crisis standards of care
T2 - An empirical and normative analysis of change over time during covid-19
AU - Ne'eman, Ari
AU - Stein, Michael Ashley
AU - Berger, Zackary D.
AU - Dorfman, Doron
N1 - Funding Information:
The authors wish to thank Kit Albrecht, the editors of JHPPL, and two anonymous peer reviewers for their helpful feedback in the development of this piece. Research reported in this publication was supported by the National Institute of Mental Health of the National Institutes of Health under award number T32MH019733. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Mr. Ne’eman reports consulting income within the last three years from the American Civil Liberties Union, the Partnership to Improve Patient Care, and the Department of Health and Human Services Office of Civil Rights. The data presented here was not collected as part of his duties for any of these entities, including the Department of Health and Human Services, and the research, analysis, findings, and conclusions were not reviewed by them nor do they necessarily represent their views.
Publisher Copyright:
© 2021 by Duke University Press.
PY - 2021/10/1
Y1 - 2021/10/1
N2 - 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.
AB - 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.
KW - Bioethics
KW - COVID-19
KW - Crisis Standards of Care
KW - Disability rights
KW - Health law
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U2 - 10.1215/03616878-9156005
DO - 10.1215/03616878-9156005
M3 - Article
C2 - 33769474
AN - SCOPUS:85117774480
SN - 0361-6878
VL - 46
SP - 831
EP - 860
JO - Journal of Health Politics, Policy and Law
JF - Journal of Health Politics, Policy and Law
IS - 5
ER -