How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role
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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.
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The contradiction between surrogates' aggressive choices and their own understanding of patient preferences may reflect confusion of personal and patient perspectives, conflation of medical care intensity and quality, prioritization of immediate patient well-being over likely long-term outcome, reluctance in the face of prognostic uncertainty to consider withdrawal of a treatment that will likely,
“This contradiction may reflect confusion of personal and patient perspectives (39), conflation of medical care intensity and quality (40), prioritization of immediate patient well-being over likely long-term outcome (41), reluctance in the face of prognostic uncertainty to consider withdrawal of a treatment that will likely result in death (42), or simply an inadequate mechanization of the values”
From Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation (2019) · cites this paper as [39]
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- 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.
- Affiliations
- Johns Hopkins University (US)
- Memorial Sloan Kettering Cancer Center (US)
- University of North Carolina at Chapel Hill (US)
- Duke Medical Center (US)
- Icahn School of Medicine at Mount Sinai (US)
- Brigham and Women's Hospital (US)
- National Institutes of Health (US)
- ORCID
- Venue
- Critical Care Medicine
- Published
- 2018-05
- Volume
- 46
- Issue
- 5
- Pages
- 699-704
- ISSN
- 0090-3493 (ISSN-L)
- PMC
- PMC6197811
- OpenAlex
- W2800292197
- Cited by
- 31
- References
- 21
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 5 · 2023: 4 · 2022: 5 · 2021: 4 · 2020: 4 · 2019: 7
- FWCI
- 4.92
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Critical Care Medicine (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institutes of Health (Z99CL999999)
- National Cancer Institute (P30CA008748)
- National Institute of Nursing Research (R01NR012413)
- Topics
- Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Ethics in medical practice
- Keywords
- surrogate decision-making, family caregivers, chronic critical illness, mechanical ventilation, family meetings, shared decision-making, palliative care communication, family advocacy, family burden, intensive care unit
- MeSH terms
- Chronic Disease, Decision Making, Family, Female, Humans, Interviews as Topic, Male, Middle Aged, Patient Advocacy, Critical Illness, Caregivers, Qualitative Research, Grounded Theory
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