How surrogate decision-makers for patients with chronic critical illness perceive and carry out their role Journal Article


Authors: Li, L.; Nelson, J. E.; Hanson, L. C.; Cox, C. E.; Carson, S. S.; Chai, E. J.; Keller, K. L.; Tulsky, J. A.; Danis, M.
Article Title: How surrogate decision-makers for patients with chronic critical illness perceive and carry out their role
Abstract: 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. Copyright © 2018 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.
Keywords: adult; controlled study; middle aged; major clinical study; united states; randomized controlled trial; chronic disease; intensive care units; physician; self concept; coping behavior; memory; emotionality; family decision making; strength; critical illness; qualitative analysis; self care; critically ill patient; caregivers; nurse practitioner; interviews; grounded theory; human; male; female; priority journal; article; surrogate decision-makers; chronic critical illness
Journal Title: Critical Care Medicine
Volume: 46
Issue: 5
ISSN: 0090-3493
Publisher: Lippincott Williams & Wilkins  
Date Published: 2018-05-01
Start Page: 699
End Page: 704
Language: English
DOI: 10.1097/ccm.0000000000003035
PUBMED: 29462004
PROVIDER: scopus
DOI/URL:
Notes: Article -- Export Date: 1 November 2018 -- Source: Scopus
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  1. Judith Eve Nelson
    24 Nelson