Part of the standard protection of decisionally incapacitated research subjects is a prohibition against enrolling them unless surrogate decision makers authorize it. A common view is that surrogates primarily ought to make their decisions based on what the decisionally incapacitated subject would have wanted regarding research participation. However, empirical studies indicate that surrogate predictions about such preferences are not very accurate. The focus of this article is the significance of surrogate accuracy in the context of research that is not expected to benefit the research subject. We identify three morally relevant asymmetries between being enrolled and not being enrolled in such non-beneficial research, and conclude that when there is a non-negligible probability that surrogates' predictions are wrong, it will generally be better to err on the side of not authorizing enrollment.
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http://dx.doi.org/10.1007/s11017-016-9363-y | DOI Listing |
J Am Acad Psychiatry Law
December 2024
Dr. Dernbach is a Medical Toxicology Fellow, Department of Emergency Medicine; Dr. Ash is a Professor and Director, Psychiatry and Law Service, Department of Psychiatry and Behavioral Sciences; and Ms. Oyerinde is a Medical Student, Emory University, Atlanta, GA. Dr. Oldham is an Associate Professor of Psychiatry, Department of Psychiatry, University of Rochester Medical Center, Rochester, NY.
Crit Care Explor
August 2024
Department of Surgery, University of Florida, Gainesville, FL.
Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources.
View Article and Find Full Text PDFChest
May 2023
Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA.
Background: Although trust is central to successful physician-family relationships in ICUs, little is known about how to promote surrogates' trust of ICU physicians in this setting.
Research Question: Does the conduct of family conferences and physicians' use of shared decision-making (SDM) within family conferences impact surrogates' trust in the physician?
Study Design And Methods: A mixed-methods secondary analysis was done of a multicenter prospective cohort study of 369 surrogate decision-makers of 204 decisionally incapacitated patients at high risk of death or severe functional impairment within 13 ICUs at six US medical centers between 2008 and 2012. Surrogates completed the Abbreviated Wake Forest Physician Trust Scale (range, 5-25) before and after an audio-recorded family conference conducted within 5 days of ICU admission.
AJOB Empir Bioeth
April 2022
Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, USA.
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.
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