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Ethics Priorities of the Curing Coma Campaign: An Empirical Survey

  • Ethical Matters
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Abstract

Background

The Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC and the variability in priorities based on country of practice.

Methods

An electronic survey on the ethics priorities for the CCC was developed using rank-choice questions and distributed between May and July 2021 to a listserv of the 164 collaborators of the CCC. The median rank for each topic and subtopic was determined. Comparisons were made on the basis of country of practice.

Results

The survey was completed by 93 respondents (57% response rate); 67% practiced in the United States. On the basis of respondent ranking of each topic, the prioritization of ethics topics across respondents was as follows: (1) clinical care, (2) diagnostic definitions, (3) clinical research, (4) implementation/innovation, (5) family, (6) data management, (7) public engagement/perceptions, and (8) equity. Respondents who practiced in the United States were particularly concerned about public engagement, the distinction between clinical care and research, disclosure of results from clinical research to families, the definition of “personhood,” and the distinction between the self-fulfilling prophecy/nihilism and medical futility. Respondents who practiced in other countries were particularly concerned about diagnostic modalities for clinical care, investigational drugs/devices for clinical research, translation of research into practice, and the definition of “minimally conscious state.”

Conclusions

Collaborators of the CCC considered clinical care, diagnostic definitions, and clinical research the top ethics priorities of the CCC. These priorities should be considered as the CCC explores ways to improve evaluation, diagnosis, treatment, research, and prognostication of patients with coma and associated disorders of consciousness. There is some variability in ethics priorities based on country of practice.

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Data availability

The collaborators of the Curing Coma Campaign are listed in Supplemental Table 1.

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Acknowledgments

The authors would like to thank Keri Kim and Dr. Claude Hemphill for assistance distributing this survey and all the collaborators of the Curing Coma Campaign (see Supplemental Table 1).

Funding

No direct funding was received for this study. JC has an R01 supplement for studying ethics implications of disorders of consciousness (3R01NS106014-02S1). MJY is supported by the National Institutes of Health Brain Initiative (F32MH123001) and the American Academy of Neurology (Palatucci Advocacy Award). JJF is supported by the National Institutes of Health Brain Initiative (1RF1MH12378-01) and the National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health (1DP2HD1010400-01). The other authors have no financial conflicts of interest.

Author information

Authors and Affiliations

  1. Division of Neurocritical Care, Departments of Neurology and Neurosurgery, New York University Langone Medical Center, 530 First Avenue, Skirball-7R , New York, NY, 10016, USA

    Ariane Lewis

  2. Columbia University and NewYork-Presbyterian Hospital, New York, NY, USA

    Jan Claassen

  3. University of British Columbia, Vancouver, BC, Canada

    Judy Illes

  4. Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland

    Ralf J. Jox

  5. Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Matthew Kirschen

  6. Sorbonne University, Paris Brain Institute - ICM, Inserm, CNRS, APHP - Hôpital de La Pitié Salpêtrière, DMU Neurosciences, Paris, France

    Benjamin Rohaut

  7. Northwest Neurology, Chicago, IL, USA

    Stephen Trevick

  8. Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA

    Michael J. Young

  9. Weill Cornell Medical College, New York, NY, USA

    Joseph J. Fins

  10. Yale Law School, New Haven, CT, USA

    Joseph J. Fins

  11. Rockefeller University, New York, NY, USA

    Joseph J. Fins

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  1. Ariane Lewis
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Consortia

and the Curing Coma Campaign and its contributing members

Contributions

AL was responsible for conception and design, analysis and interpretation of data, drafting of the manuscript, statistical analysis, and final approval of the manuscript. JC, JI, RJJ, MK, BR, ST, and MJY were responsible for design, critical revision of the manuscript, and final approval of the manuscript. JJF was responsible for conception and design, analysis and interpretation of the data, drafting of the manuscript, critical revision of the manuscript, and final approval of the manuscript. The Curing Coma Campaign and its contributing members, which includes the following individuals, had final approval of the manuscript: (1) Claude Hemphill, (2) DaiWai Olson, and (3) Len Polizzotto.

Corresponding author

Correspondence to Ariane Lewis.

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Supplementary Information

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Supplemental Appendix (PDF 71 kb)

Supplemental Table 1 (DOCX 26 kb)

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Lewis, A., Claassen, J., Illes, J. et al. Ethics Priorities of the Curing Coma Campaign: An Empirical Survey. Neurocrit Care 37, 12–21 (2022). https://doi.org/10.1007/s12028-022-01506-2

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  • DOI: https://doi.org/10.1007/s12028-022-01506-2

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