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

Publication ,  Journal Article
Li, L; Nelson, JE; Hanson, LC; Cox, CE; Carson, SS; Chai, EJ; Keller, KL; Tulsky, JA; Danis, M
Published in: Crit Care Med
May 2018

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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Published In

Crit Care Med

DOI

EISSN

1530-0293

Publication Date

May 2018

Volume

46

Issue

5

Start / End Page

699 / 704

Location

United States

Related Subject Headings

  • Qualitative Research
  • Patient Advocacy
  • Middle Aged
  • Male
  • Interviews as Topic
  • Humans
  • Grounded Theory
  • Female
  • Family
  • Emergency & Critical Care Medicine
 

Citation

APA
Chicago
ICMJE
MLA
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Li, L., Nelson, J. E., Hanson, L. C., Cox, C. E., Carson, S. S., Chai, E. J., … Danis, M. (2018). How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role. Crit Care Med, 46(5), 699–704. https://doi.org/10.1097/CCM.0000000000003035
Li, Lingsheng, Judith E. Nelson, Laura C. Hanson, Christopher E. Cox, Shannon S. Carson, Emily J. Chai, Kristine L. Keller, James A. Tulsky, and Marion Danis. “How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role.Crit Care Med 46, no. 5 (May 2018): 699–704. https://doi.org/10.1097/CCM.0000000000003035.
Li L, Nelson JE, Hanson LC, Cox CE, Carson SS, Chai EJ, et al. How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role. Crit Care Med. 2018 May;46(5):699–704.
Li, Lingsheng, et al. “How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role.Crit Care Med, vol. 46, no. 5, May 2018, pp. 699–704. Pubmed, doi:10.1097/CCM.0000000000003035.
Li L, Nelson JE, Hanson LC, Cox CE, Carson SS, Chai EJ, Keller KL, Tulsky JA, Danis M. How Surrogate Decision-Makers for Patients With Chronic Critical Illness Perceive and Carry Out Their Role. Crit Care Med. 2018 May;46(5):699–704.

Published In

Crit Care Med

DOI

EISSN

1530-0293

Publication Date

May 2018

Volume

46

Issue

5

Start / End Page

699 / 704

Location

United States

Related Subject Headings

  • Qualitative Research
  • Patient Advocacy
  • Middle Aged
  • Male
  • Interviews as Topic
  • Humans
  • Grounded Theory
  • Female
  • Family
  • Emergency & Critical Care Medicine