Barriers to goals of care discussions with seriously ill hospitalized patients and their families: A multicenter survey of clinicians

John J. You, McMaster University
James Downar, University of Toronto
Robert A. Fowler, University of Toronto
François Lamontagne, Centre Hospitalier Universitaire de Sherbrooke
Irene W.Y. Ma, University of Calgary
Dev Jayaraman, Université McGill
Jennifer Kryworuchko, University of Saskatchewan
Patricia H. Strachan, McMaster University
Roy Ilan, Queen's University, Kingston
Aman P. Nijjar, The University of British Columbia
John Neary, McMaster University
John Shik, Memorial University of Newfoundland
Kevin Brazil, Queen's University Belfast
Amen Patel, McMaster University
Kim Wiebe, Max Rady College of Medicine, University of Manitoba
Martin Albert, Hôpital du Sacré-Cœur-de-Montréal
Anita Palepu, The University of British Columbia
Elysée Nouvet, McMaster University
Amanda Roze Des Ordons, University of Calgary
Nishan Sharma, University of Calgary
Amane Abdul-Razzak, University of Calgary
Xuran Jiang, Kingston General Hospital, Ontario
Andrew Day, Kingston General Hospital, Ontario
Daren K. Heyland, Kingston General Hospital, Ontario

Abstract

Copyright 2015 American Medical Association. All rights reserved. IMPORTANCE: Seriously ill hospitalized patients have identified communication and decision making about goals of care as high priorities for quality improvement in end-of-life care. Interventions to improve care are more likely to succeed if tailored to existing barriers. OBJECTIVE: To determine, from the perspective of hospital-based clinicians, (1) barriers impeding communication and decision making about goals of care with seriously ill hospitalized patients and their families and (2) their own willingness and the acceptability for other clinicians to engage in this process. DESIGN, SETTING, AND PARTICIPANTS: Multicenter survey of medical teaching units of nurses, internal medicine residents, and staff physicians from participating units at 13 university-based hospitals from 5 Canadian provinces. MAIN OUTCOMES AND MEASURES: Importance of 21 barriers to goals of care discussions rated on a 7-point scale (1 = extremely unimportant; 7 = extremely important). RESULTS: Between September 2012 and March 2013, questionnaires were returned by 1256 of 1617 eligible clinicians, for an overall response rate of 77.7% (512 of 646 nurses [79.3%], 484 of 634 residents [76.3%], 260 of 337 staff physicians [77.2%]). The following family member-related and patient-related factors were consistently identified by all 3 clinician groups as the most important barriers to goals of care discussions: family members' or patients' difficulty accepting a poor prognosis (mean [SD] score, 5.8 [1.2] and 5.6 [1.3], respectively), family members' or patients' difficulty understanding the limitations and complications of life-sustaining treatments (5.8 [1.2] for both groups), disagreement among family members about goals of care (5.8 [1.2]), and patients' incapacity to make goals of care decisions (5.6 [1.2]). Clinicians perceived their own skills and system factors as less important barriers. Participants viewed it as acceptable for all clinician groups to engage in goals of care discussions - including a role for advance practice nurses, nurses, and social workers to initiate goals of care discussions and be a decision coach. CONCLUSIONS AND RELEVANCE: Hospital-based clinicians perceive family member-related and patient-related factors as the most important barriers to goals of care discussions. All health care professionals were viewed as playing important roles in addressing goals of care. These findings can inform the design of future interventions to improve communication and decision making about goals of care.