Abstract
BackgroundAlthough patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients’ wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP.MethodsIn this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients’ knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper.ResultsOne hundred two participants provided an analyzable response to the survey when asked why they haven’t talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It’s not a priority; and 8. A lack of knowledge about ACP.ConclusionsPatients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
Highlights
Patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences
Through qualitative analysis of free text responses to open ended questions about what makes it difficult to have Advance Care Planning (ACP) discussions, we found several overall themes relating to patients’ ACP discussions with physicians and family members
The emergent themes included barriers as perceived by the patients to ACP discussions, concerns patients have about the effect these discussions may have on relationships and dynamics with both family members and family physicians, and issues relating to patients’ knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself
Summary
Patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people’s expressed preferences. Medicine has long prided itself in being a patient- centred profession, [4] always highlighting the need for putting the patient’s perspective and experiences front and centre in all healthcare conversations and decisions [3, 5, 6] This approach seems noble, it appears to be mostly aspirational when it comes to communication and decision-making about future treatments and care at the end-of-life. Some people may have considered what preferences they have regarding future and end-of-life care, but may not be able to communicate these preferences at the time decisions are needed [11, 12] If they have not engaged in the process of advanced care planning (ACP) with family members and health care providers, these preferences cannot be known
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