How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role

Objectives: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. Design: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. Settings: Medical ICUs at four U.S. hospitals. Participants: Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study. Interventions: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. Measurements and Main Results: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. Conclusions: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care. The views expressed here do not necessarily reflect the policies of the National Institutes of Health. Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal's website (http://ift.tt/29S62lw). Supported, in part, by Administrative Supplement R01 NR012413-02S1 from the Office of the Director, National Institutes of Health, to R01 NR012413 from the National Institute of Nursing Research and by the Department of Bioethics in the Clinical Center, an intramural program of the National Institutes of Health. Additional funding received from the Medical Research Scholars Program, an enrichment program for medical, dental, and veterinary students at the National Institutes of Health. Drs. Nelson, Hanson, Cox, Carson, Chai, Keller, Tulsky, and Danis received support for article research from the National Institutes of Health (NIH). Dr. Carson and Ms. Keller's institution received funding from National Institute of Nursing Research (NINR). Dr. Chai's institution received funding from NIH/NINR R01 NR 012413. Dr. Tulsky received funding Recap Information Systems (he has 5% ownership, which makes audio analysis software; this product had nothing to do with the writing of this paper or this research). Dr. Li disclosed that he does not have any potential conflicts of interest. For information regarding this article, E-mail: mdanis@nih.gov Copyright © by 2018 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.

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