How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role. Issue 5 (May 2018)

• Record Type: Journal Article
• Authors: Li, Lingsheng; Nelson, Judith E.; Hanson, Laura C.; Cox, Christopher E.; Carson, Shannon S.; Chai, Emily J.; Keller, Kristine L.; Tulsky, James A.; Danis, Marion
• Is Part Of: Critical care medicine. Volume 46:Issue 5(2018)
• Publication Date: 2018-05
• Subjects: caregivers -- chronic critical illness -- intensive care units -- interviews -- qualitative analysis -- surrogate decision-makers; Critical care medicine -- Periodicals; Soins intensifs -- Périodiques; 616.028
• DOI: 10.1097/CCM.0000000000003035
• Languages: English
• ISSNs: 0090-3493

Abstract

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. Abstract : Supplemental Digital Content is available in the text.