Lingsheng Li1, Judith E Nelson2, Laura C Hanson3, Christopher E Cox4, Shannon S Carson5, Emily J Chai6, Kristine L Keller7, James A Tulsky8,9, Marion Danis10. 1. Department of Medicine, Johns Hopkins Bayview Medical Center, Baltimore, MD. 2. Departments of Medicine and Anesthesia & Critical Care Medicine, Memorial Sloan Kettering Cancer Center, Weill Cornell Medical College, New York, NY. 3. Division of Geriatric Medicine & Palliative Care Program, University of North Carolina School of Medicine, Chapel Hill, NC. 4. Department of Medicine, Duke University Medical Center, Durham, NC. 5. Pulmonary Diseases and Critical Care Medicine, University of North Carolina School of Medicine, Chapel Hill, NC. 6. Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. 7. Division of General Internal Medicine, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY. 8. Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA. 9. Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA. 10. Department of Bioethics, Clinical Center, National Institutes of Health, Bethesda, MD.
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.
RCT Entities:
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.
Authors: Shannon S Carson; Maihan Vu; Marion Danis; Sharon L Camhi; Leslie P Scheunemann; Christopher E Cox; Laura C Hanson; Judith E Nelson Journal: Crit Care Med Date: 2012-01 Impact factor: 7.598
Authors: J Randall Curtis; Patsy D Treece; Elizabeth L Nielsen; Julia Gold; Paul S Ciechanowski; Sarah E Shannon; Nita Khandelwal; Jessica P Young; Ruth A Engelberg Journal: Am J Respir Crit Care Med Date: 2016-01-15 Impact factor: 21.405
Authors: Jonathan R McDonagh; Tricia B Elliott; Ruth A Engelberg; Patsy D Treece; Sarah E Shannon; Gordon D Rubenfeld; Donald L Patrick; J Randall Curtis Journal: Crit Care Med Date: 2004-07 Impact factor: 7.598
Authors: Angela O Suen; Rachel A Butler; Robert M Arnold; Brad Myers; Holly O Witteman; Christopher E Cox; Jennifer Gonzalez McComb; Praewpannanrai Buddadhumaruk; Anne-Marie Shields; Noah Morse; Amanda Argenas; Douglas B White Journal: Ann Am Thorac Soc Date: 2021-07
Authors: Christopher E Cox; Douglas B White; Catherine L Hough; Derek M Jones; Jeremy M Kahn; Maren K Olsen; Carmen L Lewis; Laura C Hanson; Shannon S Carson Journal: Ann Intern Med Date: 2019-01-29 Impact factor: 25.391
Authors: Angela O Suen; Rachel A Butler; Robert Arnold; Brad Myers; Holly O Witteman; Christopher E Cox; Amanda Argenas; Praewpannanrai Buddadhumaruk; Alexandra Bursic; Natalie C Ernecoff; Anne-Marie Shields; Dang K Tran; Douglas B White Journal: J Crit Care Date: 2019-12-06 Impact factor: 3.425
Authors: Louise Rose; Laura Istanboulian; Laura Allum; Lisa Burry; Craig Dale; Nicholas Hart; Kalliopi Kydonaki; Pam Ramsay; Natalie Pattison; Bronwen Connolly Journal: Crit Care Explor Date: 2019-04-17
Authors: Eliotte L Hirshberg; Jorie Butler; Morgan Francis; Francis A Davis; Doriena Lee; Fahina Tavake-Pasi; Edwin Napia; Jeanette Villalta; Valentine Mukundente; Heather Coulter; Louisa Stark; Sarah J Beesley; James F Orme; Samuel M Brown; Ramona O Hopkins Journal: BMJ Open Date: 2020-04-06 Impact factor: 2.692