@article{88c078288646433082903f0f92d0679e,
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.",
keywords = "caregivers, chronic critical illness, intensive care units, interviews, qualitative analysis, surrogate decision-makers",
author = "Lingsheng Li and Nelson, {Judith E.} and Hanson, {Laura C.} and Cox, {Christopher E.} and Carson, {Shannon S.} and Chai, {Emily J.} and Keller, {Kristine L.} and Tulsky, {James A.} and Marion Danis",
note = "Funding Information: Supported, in part, by Administrative Supplement R01 NR012413-02S1 from the Office of the Director, National Institutes of Health, to R01 NR012413 from the National Institute of Nursing Research and by the Department of Bioethics in the Clinical Center, an intramural program of the National Institutes of Health. Additional funding received from the Medical Research Scholars Program, an enrichment program for medical, dental, and veterinary students at the National Institutes of Health. Funding Information: 1Department of Medicine, Johns Hopkins Bayview Medical Center, Bal-timore, MD. 2Departments of Medicine and Anesthesia & Critical Care Medicine, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY. 3Division of Geriatric Medicine & Palliative Care Program, University of North Carolina School of Medicine, Chapel Hill, NC. 4Department of Medicine, Duke University Medical Center, Durham, NC. 5Pulmonary Diseases and Critical Care Medicine, University of North Carolina School of Medicine, Chapel Hill, NC. 6Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. 7Division of General Internal Medicine, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. 8Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA. 9Department of Medicine, Brigham and Women{\textquoteright}s Hospital, Harvard Med-ical School, Boston, MA. 10Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD. The views expressed here do not necessarily reflect the policies of the National Institutes of Health. Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal{\textquoteright}s website (http://journals.lww.com/ccmjournal). Supported, in part, by Administrative Supplement R01 NR012413-02S1 from the Office of the Director, National Institutes of Health, to R01 NR012413 from the National Institute of Nursing Research and by the Department of Bioethics in the Clinical Center, an intramural program of the National Institutes of Health. Additional funding received from the Medical Research Scholars Program, an enrichment program for medical, dental, and veterinary students at the National Institutes of Health. Drs. Nelson, Hanson, Cox, Carson, Chai, Keller, Tulsky, and Danis received support for article research from the National Institutes of Health (NIH). Dr. Carson and Ms. Keller{\textquoteright}s institution received funding from National Institute of Nursing Research (NINR). Dr. Chai{\textquoteright}s institution received funding from NIH/NINR R01 NR 012413. Dr. Tulsky received funding Recap Information Systems (he has 5% ownership, which makes audio analysis Patients with chronic critical illness require prolonged software; this product had nothing to do with the writing of this paper or mechanical ventilation and intensive care due to respira-of interest.this research). Dr. Li disclosed that he does not have any potential conflicts tory failure and multiple organ dysfunction (1, 2). They For information regarding this article, E-mail: mdanis@nih.gov face an uncertain disease trajectory and complicated medical Copyright {\textcopyright} 2018 by the Society of Critical Care Medicine and Wolters decisions with life and death consequences. As with most criti- Kluwer Health, Inc. All Rights Reserved. cally ill patients, they are often unable to make treatment deci- DOI: 10.1097/CCM.0000000000003035 sions and decision-making falls to their family members or other Publisher Copyright: Copyright {\textcopyright} 2018 by the Society of Critical Care Medicine and Wolters Kluwer Health, Inc. All Rights Reserved.",
year = "2018",
month = may,
day = "1",
doi = "10.1097/CCM.0000000000003035",
language = "English",
volume = "46",
pages = "699--704",
journal = "Critical Care Medicine",
issn = "0090-3493",
publisher = "Lippincott Williams and Wilkins Ltd.",
number = "5",
}