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    1 Comment for this article
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    The Long Road to Patient-Centered Care
    Patrick Fafard | GSPIA, University of Ottawa
    John You and his colleagues in CARENET are to be congratulated for their diligent efforts to better understand how to improve end of life care for patients in hospital settings. Their most recent survey of clinicians offers insights into how physicians think about end of life care not just as a result of the survey analysis but also, perhaps more importantly, of the survey design. In short, the troubling assumptions built into the survey may reveal more than the survey results themselves.In seeking to better understand the barriers to effective communication with patients about end of life care, the survey instrument administered to physicians lists ten barriers relating to patients and their families, eight systemic or external factors, but only three relating to physicians themselves. It is, therefore, not surprising that the survey results suggest that clinicians think that barriers arising from patients and their families are the most important. Similarly, the paper concedes that when talking about communications between patients/family members and physicians/nurses, it is likely that problems can arise from both sides of the conversation. Yet the range of barriers arising from physicians themselves is quite narrow, if only as compared to the barriers listed for nurses, families and the list of systemic and external barriers. In effect, the survey instrument was designed in a way that the results could have been anticipated before the survey was administered.. Precisely in order to minimize this kind of bias, it is common practice to carefully build and test the survey beforehand. The paper describes an elaborate process of questionnaire development. But it is quickly apparent that among all of the people consulted, patients and their families are absent. Thus, it is perhaps not surprising that the bias in the questionnaire was not flagged early on.The reporting of the results is also troubling. Early on the authors talk about “the most important barriers perceived by clinicians”. This is the correct formulation based on the survey being reported on. However, later the paper refers only to “the most important barriers” tout court. A direct comparison to the earlier work by CARENET on the perceptions of seriously ill patients and their family members would have been preferable.(1)More generally, as this paper is written it is not clear whether or to what extent the work of CARENET is informed by the enormous amount of research and effort devoted to defining and imagining patient-centered care. I submit that a survey design that was grounded in this body of research would have looked quite different and would not have resulted in findings that, as Kirkpatrick has suggested, risk blaming the victims.(2)(1) Heyland DK, Dodek P, Rocker G, et al; Canadian Researchers End-of-Life Network (CARENET). What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ. 2006;174(5):627-633. (2) Kirkpatrick JN. Goals of Care Discussion: How Hard It Can Be. JAMA Inter Med. 2015. doi:10.1001/jamainternmed.2014.7740.
    CONFLICT OF INTEREST: None Reported
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    Original Investigation
    April 2015

    Barriers to Goals of Care Discussions With Seriously Ill Hospitalized Patients and Their Families: A Multicenter Survey of Clinicians

    Author Affiliations
    • 1Department of Medicine, McMaster University, Hamilton, Ontario, Canada
    • 2Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
    • 3Division of Critical Care Medicine, University of Toronto, Toronto, Ontario, Canada
    • 4Division of Palliative Care, University of Toronto, Toronto, Ontario, Canada
    • 5Department of Critical Care Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
    • 6Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
    • 7Centre de Recherche Clinique Hôpital Universitaire de Sherbrooke, Université de Sherbrooke, Sherbrooke, Québec, Canada
    • 8Department of Medicine, University of Calgary, Calgary, Alberta, Canada
    • 9Department of Internal Medicine, McGill University, Montreal, Québec, Canada
    • 10College of Nursing, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
    • 11School of Nursing, McMaster University, Hamilton, Ontario, Canada
    • 12Department of Medicine, Queen’s University, Kingston, Ontario, Canada
    • 13Critical Care Program, Queen’s University, Kingston, Ontario, Canada
    • 14Division of General Internal Medicine, University of British Columbia, Vancouver, British Columbia, Canada
    • 15Faculty of Medicine, Memorial University of Newfoundland, St John’s, Newfoundland and Labrador, Canada
    • 16School of Nursing and Midwifery, Queen’s University Belfast, Belfast, Northern Ireland, United Kingdom
    • 17Faculty of Medicine, University of Manitoba, Winnipeg, Manitoba, Canada
    • 18Centre de Recherche de l’Hôpital du Sacré-Coeur de Montréal, Département de Médecine, Université de Montréal, Montréal, Québec, Canada
    • 19Department of Critical Care Medicine, University of Calgary, Calgary, Alberta, Canada
    • 20Division of Palliative Medicine, University of Calgary, Calgary, Alberta, Canada
    • 21Clinical Evaluation Research Unit, Department of Medicine, Kingston General Hospital, Kingston, Ontario, Canada
    • 22Department of Community Health and Epidemiology, Queen’s University, Kingston, Ontario, Canada
    JAMA Intern Med. 2015;175(4):549-556. doi:10.1001/jamainternmed.2014.7732
    Abstract

    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.

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