Objectives: Although shared decision making requires clinicians to discuss the patient’s values and preferences, little is known about the extent to which this occurs with surrogates in ICUs. We sought to assess whether and how clinicians talk with surrogates about incapacitated patients’ preferences and values.
Design: Prospective, cross-sectional study.
Setting: Five ICUs of two hospitals.
Subjects: Fifty-four physicians and 159 surrogates for 71 patients.
Interventions: We audio-recorded 71 conferences in which clinicians and surrogates discussed life-sustaining treatment decisions for an incapacitated patient near the end of life. Two coders independently coded each instance in which clinicians or surrogates discussed the patient’s previously expressed treatment preferences or values. They subcoded for values that are commonly important to patients near the end of life. They also coded treatment recommendations by clinicians that incorporated the patient’s preferences or values.
Measurements and Main Results: In 30% of conferences, there was no discussion about the patient’s previously expressed preferences or values. In 37%, clinicians and surrogates discussed both the patient’s treatment preferences and values. In the remaining 33%, clinicians and surrogates discussed either the patient’s treatment preferences or values, but not both. In more than 88% of conferences, there was no conversation about the patient’s values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality. On average, 3.8% (SD, 4.3; range, 0–16%) of words spoken pertained to patient preferences or values.
Conclusions: In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients’ preferences or values about end-of-life decision making. In less than 12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function. Interventions are needed to ensure patients’ values and preferences are elicited and integrated into end-of-life decisions in ICUs.
1Division of Pulmonary, Allergy, and Critical Care Medicine, University of Pittsburgh, Pittsburgh, PA.
2Program on Ethics and Decision Making in Critical Illness, Clinical Research, Investigation and Systems Modeling of Acute Illness (CRISMA) Center, University of Pittsburgh, Pittsburgh, PA.
3Division of Medical Humanities, University of Arkansas for Medical Sciences, Little Rock, AR.
4Department of Internal Medicine, University of Arkansas for Medical Sciences, Little Rock, AR.
5Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, PA.
6Palliative and Supportive Institute, University of Pittsburgh Medical Center, Pittsburgh, PA.
7Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh, PA.
* See also p. 909.
Data were collected at the University of California at San Francisco. Development of the framework occurred at the University of North Carolina at Chapel Hill and the University of Pittsburgh. Transcript analysis, statistical analysis, and drafting of the article were performed at the University of Pittsburgh. Drs. Scheunemann, Cunningham, and White contributed to conception and design. All authors contributed to analysis and interpretation and drafting the article for important intellectual content.
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Dr. Scheunemann was supported by the National Institutes of Health-National Heart, Lung, and Blood Institute (NIH-NHLBI; 2T32HL007820-16A1). Dr. Arnold was supported by the Jewish Healthcare Foundation and the Arthur Vining Davis Foundation. Dr. Buddadhumaruk disclosed work for hire. Dr. White was supported by the NIH-NHLBI (1R01HL094553) and the Paul Beeson Award in Aging Research from the National Institute on Aging. Dr. Cunningham has disclosed that he does not have any potential conflicts of interest.
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