Abstract
To date no one has identified or described the population of incapacitated patients being treated in an inpatient setting who lack proxy decision-makers. Nor, despite repeated calls for protocols to be developed for decision-making, has any institution reported on the utilization of such a protocol. In 2005, our urban tertiary care hospital instituted a protocol utilizing community members of the ethics committee to meet with the medical providers and engage in shared decision-making for patients without proxies (PWPs). We conducted a retrospective chart review and in this paper describe nearly 200 patients who were identified and treated according to the protocol over a 12 year period. After an aggressive search, family members were located for a surprising number of patients, leaving 80 patients who needed decisions to be made utilizing the PWP committee. We review the decisions required, the results of the shared decision-making meetings, and the patient outcomes. Our experience has shown that a protocol involving community volunteers to make decisions for PWPs in a timely manner is feasible and ethically defensible. The protocol has been accepted by physicians and utilized with increasing frequency. Because it was possible to gather at least minimal information on most patients, a standard of “informed best interest” was used to make decisions. PWP committee recommendations varied, but in all cases agreement was reached with the attending physicians.
Similar content being viewed by others
References
American Medical Association. Code of medical ethics opinion 2.1.2 Decisions for adult patients who lack capacity. https://www.ama-assn.org/sites/default/files/media-browser/code-of-medical-ethics-chapter-2.pdf. Published 2016. Accessed February 24, 2017.
Asch, D. A., Hansen-Flaschen, J., & Lanken, P. N. (1995). Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: Conflicts between physicians’ practices and patients’ wishes. American Journal of Respiratory and Critical Care Medicine,151(2), 288–292.
Bandy, R. J., Helf, P. R., Bandy, R. W., & Torke, A. M. (2010). Medical decision-making during the guardianship process for incapacitated, hospitalized adults: A descriptive cohort study. Journal of General Internal Medicine,25(10), 1003–1008.
Courtwright, A. M., Abrams, J., & Robinson, E. M. (2017). The role of a hospital ethics consultation service in decision-making for unrepresented patients. Journal of Bioethical Inquiry,14(2), 241–250.
Courtwright, A., & Rubin, E. (2015). Who should decide for the unrepresented? Bioethics,30(3), 173–180.
Farrell, T. W., Widera, E., Rosenberg, L., et al. (2017). ABS position statement: Making medical treatment decisions for unbefriended older adults. Journal of the American Geriatrics Society,65(1), 14–15.
Hyun, I., Griggins, C., Weiss, M., Robbins, D., Robichaud, A., & Daly, B. (2006). When patients do not have a proxy: A procedure for medical decision making when there is no one to speak for the patient. Journal of Clinical Ethics,17(4), 323–330.
Karp, N., & Wood, E. (2003). Incapacitated and alone: Health care decision-making for the unbefriended elderly. Washington, DC: American Bar Association Commission on Law and Aging.
Kim, H., & Song, M. (2018). Medical decision-making for adults who lack decision-making capacity and a surrogate: State of the science. American Journal of Hospice and Palliative Medicine,35(9), 1227–1234.
Pope, T. M. (2013). Making medical decisions for patients without surrogates. New England Journal of Medicine,369(21), 1976–1978.
Pope, T. M. (2017). Unbefriended and unrepresented: Better medical decision making for incapacitated patients without healthcare surrogates. Georgia State University Law Review,33(4), 923–1019.
Pope, T. M., & Sellers, T. (2012a). Legal briefing: The unbefriended: Making healthcare decisions for patients without surrogates (Part 1). Journal of Clinical Ethics,23(1), 84–96.
Pope, T. M., & Sellers, T. (2012b). Legal briefing: The unbefriended: Making healthcare decisions for patients without surrogates (Part 2). Journal of Clinical Ethics,23(2), 177–192.
Varma, S., & Wendler, D. (2007). Medical decision making for patients without surrogates. Archives of Internal Medicine,167(16), 1711–1715.
White, D. B., Curtis, J. R., Lo, B., & Luce, J. M. (2006). Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers. Critical Care Medicine,34(8), 2053–2059.
White, D. B., Curtis, J. R., Wolf, L. E., Prendergast, T. J., Taichman, D. B., Kuniyoshi, G., et al. (2007). Life support for patients without a surrogate decision maker: Who decides? Annals of Internal Medicine,147(1), 34–40.
White, D. B., Jonsen, A., & Lo, B. (2012). Ethical challenge: When clinicians act as surrogates for unrepresented patients. American Journal of Critical Care,21(3), 202–207.
Acknowledgement
The authors thank O. Mary Dwyer and Hillary Sedlacek for assistance in reviewing medical records, and Dr. Allyson Robichaud for reviewing the manuscript. The authors also thank the volunteers who serve on the PWP committee.
Author information
Authors and Affiliations
Contributions
Dr. CG, Ms. LM and Dr. BD were responsible for the concept and design of the study. Dr. CG, Ms. LM, and Mr. EB acquired the data. Dr. CG was responsible for analysis and interpretation of the data, and drafting of the manuscript. Drs. BD and CG and Mr. EB were responsible for critical revision of the manuscript for important intellectual content. Dr. BD provided supervision.
Corresponding author
Ethics declarations
Conflict of interests
None of the authors have conflicts to report.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Lauren McAliley—Retired
Rights and permissions
About this article
Cite this article
Griggins, C., Blackstone, E., McAliley, L. et al. Making Medical Decisions for Incapacitated Patients Without Proxies: Part I. HEC Forum 32, 33–45 (2020). https://doi.org/10.1007/s10730-019-09387-3
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10730-019-09387-3