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October - 2017


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The Voice of Surrogate Decision-Makers. Family Responses to Prognostic Information in Chronic Critical Illness

J Nelson, L.C Hanson, K.L Keller, S.S Carson, C.E. Cox, J.A. Tulsky, D.B White, E.J Chai, S.P Weiss, and M.Danis Am J Resp Crit Care Med, 2017, 196(7);864-872


Chronic critical illness has profound effects on patients and their families. One aspect is the challenge of acting as a surrogate decision-maker, trying to rationally interpret prognosis and make decision while dealing  the with emotional burden of unfavourable prognostic information. 

This qualitative study of content-guided, audio-recorded family meetings led by skilled clinician communicators (palliative care physician and nurse practitioner) was conducted at medical ICUs at 4 hospitals in 2 states from Dec 2010 to Oct 2014.  Adult patients were eligible of they were ventilated for >7 days and not expected to liberate from ventilation or die in theft 3-days. The patients primary and any additional surrogate decision makers were recruited. 

What did they do?

  • A total of 61 SIT meetings with 51 surrogates of 43 patients occurred. 10% were attended by ICU clinicians. 
  • Surrogates in both the intervention and control groups received a validated brochure addressing key aspects of chronic critical illness
  • Intervention surrogates also received at least two content-guided meetings where information and emotional support were provided within a goal directed decision-making framework. These meetings were led by a Supportive Information Team (SIT) composed of a palliative care physician and nurse practitioner, with optional attendance by the ICU attending physician. SIT clinicians met formally with the ICU attending physician before each SIT meeting and, using a template-guided process, reviewed the patient’s condition, prognosis, and treatment as well as the ICU team’s assessment and recommendations. They met again after the meeting to provide feedback. Additional SIT meetings were conducted upon request from family, ICU, or SIT clinicians. SIT meeting protocols reflected best communication practices based on existing evidence, including asking permission before sharing prognostic information.
  • Audio-recorded meetings were transcribed verbatim and analyzed using a grounded theory approach. To develop a preliminary analytic coding framework, an interdisciplinary group of six investigators (medical, nursing, and mental health professionals) contributed expertise in critical care, ethics, palliative care, geriatrics, and psychology. These investigators independently used open and axial coding to identify concepts and categories in two successive random 20% samples of transcripts of full SIT meetings involving unique patients…..

What did they find?

  • They identified 6 distinct categories of responseto prognostic information: 
    • receptivity
    • deflection/rejection
    • emotion: anger, sadness, grief, humour
    • characterization of patient: spoke of attributes, accomplishments, aspirations
    • consideration of surrogate role: awareness of the demands and import of their role.
    • mobilization of support: marshalled emotional and physical support from families and friends.
  • Surrogate displayed multiple responses within or across SIT meetings. 

Content guided, communications between palliative care specialists and families of the chronically critically ill results in a spectrum of responses by surrogates to prognostic information. Recognition of these themes may help clinicians communicate with patients and families and guide development and evaluation of strategies and interventions to

support surrogates caring for a loved one in the ICU.



Rationale: 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.

Objectives: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians.

Methods: 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).

Measurements and Main Results: 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.

Conclusions: 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.


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