title: The Voice of Surrogate Decision-Makers. Family Responses to Prognostic Information in Chronic Critical Illness.
abstract: Information from clinicians about the expected course of the patient's illness is relevant and important for decision-making by surrogates for chronically critically ill patients on mechanical ventilation.
  
  
  
  To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians.
  
  
  
  This was a qualitative analysis of a consecutive sample of audio-recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for ≥7 days and expected to remain ventilated and survive for ≥72 h).
  
  
  
  A total of 66 audio-recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings.
  
  
  
  Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision-makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).
authors.affiliation: 1 Memorial Sloan Kettering Cancer Center and Weill Cornell Medical College, New York, New York.
authors.forename: Judith E
authors.initials: JE
authors.lastname: Nelson
authors.affiliation: 2 University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Laura C
authors.initials: LC
authors.lastname: Hanson
authors.affiliation: 3 Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Kristine L
authors.initials: KL
authors.lastname: Keller
authors.affiliation: 2 University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Shannon S
authors.initials: SS
authors.lastname: Carson
authors.affiliation: 4 Duke University Medical Center, Durham, North Carolina.
authors.forename: Christopher E
authors.initials: CE
authors.lastname: Cox
authors.affiliation: 5 Dana Farber Cancer Institute and Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
authors.forename: James A
authors.initials: JA
authors.lastname: Tulsky
authors.affiliation: 6 University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania; and.
authors.forename: Douglas B
authors.initials: DB
authors.lastname: White
authors.affiliation: 3 Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Emily J
authors.initials: EJ
authors.lastname: Chai
authors.affiliation: 3 Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Stefanie P
authors.initials: SP
authors.lastname: Weiss
authors.affiliation: 7 National Institutes of Health, Bethesda, Maryland.
authors.forename: Marion
authors.initials: M
authors.lastname: Danis
mesh_terms: D002908:Chronic Disease / Q000523:psychology*; D003422:Critical Care / Q000379:methods / Q000523:psychology*; D016638:Critical Illness / Q000523:psychology*; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods / Q000523:psychology*; D011368:Professional-Family Relations; D011379:Prognosis; D012121:Respiration, Artificial / Q000523:psychology / Q000706:statistics & numerical data
keywords: critical illness; health communication; mechanical ventilation; palliative care