Surrogate Perspectives on Patient Preference Predictors: Good Idea, but I Should Decide How They Are Used

• Type of Material: Article
• Authors: Dana Howard, The Ohio State University; Allan Rivlin, Zen Political Research; Philip Candilis, DC Department of Mental Health; Neal Dickert, Emory University; Claire Drolen, David Geffen School of Medicine at UCLA; Benjamin Krohmal, Washington Hospital Center; Mark Pavlick, St Elizabeths Hospital, Washington, DC, USA; David Wendler, National Institutes of Health (NIH)
• Language: English
• Date: 2022-01-01
• Publisher: Informa UK Limited
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: This work was authored as part of the Contributor’s official duties as an Employee of the United States Government and is therefore a work of the United States Government. In accordance with 17 U.S.C. 105, no copyright protection is available for such works under U.S. Law
• License: Creative Commons Universal : Public Domain Dedication
• Final Published Version (URL): http://dx.doi.org/10.1080/23294515.2022.2040643
• Title of Journal or Parent Work: AJOB Empirical Bioethics
• Volume: 13
• Issue: 2
• Start Page: 125
• End Page: 135
• Grant/Funding Information: This work was funded by the Intramural Research Program at the US NIH Clinical Center.
• Keywords: Decision Making; Patient Preference; Advance Directives; Humans; Judgment; advance care planning; surrogate decision-making; Predictive algorithms; critical care ethics

Abstract

Background: Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make treatment decisions for decisionally-incapacitated patients. Methods: This qualitative study used semi-structured interviews to determine the views of experienced surrogates [n = 26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents’ overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice. Results: Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient’s best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient’s preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups. Conclusions: Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it.