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

Lingsheng Li, Judith E. Nelson, Laura C. Hanson, Christopher E. Cox, Shannon S. Carson, Emily J. Chai, Kristine L. Keller, James A. Tulsky, Marion Danis

Research output: Contribution to journalArticlepeer-review

25 Scopus citations


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.

Original languageEnglish
Pages (from-to)699-704
Number of pages6
JournalCritical Care Medicine
Issue number5
StatePublished - 1 May 2018


  • caregivers
  • chronic critical illness
  • intensive care units
  • interviews
  • qualitative analysis
  • surrogate decision-makers


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