Through qualitative analysis of free text responses to open ended questions about what makes it difficult to have 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.
The centrality of the unique patient-family physician relationship has the potential to mitigate some of the challenges to advance care planning we uncovered in our study. Similar to previous literature, [31, 32] our study indicates that even when patients are indeed ready to have a conversation about ACP, they often expect their family doctor to let them know when to broach the topic. Patients who believe that they are “too young” or “too healthy” may not understand that ACP is necessary to prepare their SDM to speak for them at any point when they may not be able to speak for themselves; this may not be in the context of end of life care [21, 22, 33]. Thus, it seems that it is essential that family doctors take responsibility for initiating these discussions and for educating patients about the importance of ACP in many different circumstances.
Although in our study patients expressed an expectation that their physician would let them know when to discuss ACP, in a previous study some patients in primary care felt they, themselves, should initiate the discussion . Even when this is the case, patients who believe that they are “too young” or “too healthy” for ACP may not initiate ACP conversations early enough to be of benefit. Given that family physicians regularly engage in proactive medicine and bring up issues which patients do not bring up themselves as a usual part of care, including ACP as a routine topic in preventive care and screening discussions would be an appropriate place to start [35, 36]. Our findings may empower family physicians who believe that patients or families should initiate ACP discussions  to instead make the first move and introduce ACP to their patients. Education on effective resources already developed, such as the “Just Ask” tool  and “Speak Up” [38, 39] as part of the Canadian Advance Care Planning website (http://www.advancecareplanning.ca/resource/just-ask/), and the Plan Well Guide™ website (https://planwellguide.com/) are tools that can both remind and facilitate family physicians in their efforts to initiate these conversations with their patients. Validated communication tools, such as the Serious Illness Conversation guide, can help family physicians prepare for ACP discussions while training sessions using this guide can help to build confidence in these skills [40, 41].
Family physicians also care for their patients within the context of their families, sometimes caring for several family members in one family, and attend to patients’ physical and emotional needs. Helping a patient to navigate through the fears and worries identified in our study regarding discussing ACP, either by working with the patient in the context of their family or by engaging other members of the health care team is a meaningful contribution that most family physicians could fulfill. As noted above, by educating patients on the misconception that ACP is only related to end-of-life decision-making, family physicians can help quell the heightened emotions that patients may fear will arise in ACP discussion. Further, helping patients navigate through the purposeful reflection of their values and wishes with regards to care can be empowering for patients.
Previous work revealed that patients did not perceive ACP as relevant to them because they were healthy  and that the topic brings up difficult emotions among people with whom they have relationships such as family [21, 42, 43]. In addition, the belief that patients’ family members will know the patient’s wishes is not uncommon [16, 42] despite evidence that family carers are often unaware of patient preferences . In addition, the presence of decisional conflict and regret is known to be high in family members of critically ill patients  and negative emotional burden  and burden of decision-making is lower when ACP has been undertaken . Our study shows similar findings but provides new insights into the role of family physicians in engaging and educating patients about the importance of ACP as it may pertain to the involvement of others in decisions about their health care. Having these conversations in the context of routine preventive visits may help to change culture. Patients will hopefully see choosing an SDM and sharing goals and wishes as something usual and necessary to prepare for any time where a patient may lose the capacity to participate in decision-making and not related only to end of life care. Public health campaigns highlighting the 2017 consensus definition of ACP  could help the population as a whole to better understand the importance ACP for all adults. Further, materials aimed at engaging patients could be available in family medicine offices, encouraging patients to be ready for such discussions with family physicians as a usual aspect of care for all adults. For example, when older adults were randomized to self-directed use of an interactive website to engage in ACP that explains the importance of asking doctors questions, they were more likely to raise the issue of ACP with their primary care provider compared to people who were given an advance directive form only .
Both patients and family physicians are aware of how current clinical care and relationships are influenced by time pressures and conflicting priorities. Family doctors are aware that more time is needed to allow for ACP discussions [37, 49,50,51]. Indeed time has been described as the “ultimate barrier” to creating the best possible circumstances for a “good death” in one study of family physicians’ experiences of conflict with substitute decision-makers . Given the ongoing longitudinal relationships that typically exist between family physicians and their patients (in the Canadian context),  seeing ACP as a process as opposed to a one-time conversation could help to manage the time-related pressures perceived in the context of individual appointments. Given the evidence that patients can be engaged in ACP, funding models need to be adjusted to enable family physicians to spend the time needed for ACP discussions  Further, other, non-physician health care providers can play an important role in ACP discussions, [54,55,56,57] but the specifics of how and when they are involved will depend upon the organizational structures and funding models in various family physicians’ clinics.. These efforts could consider models like the Respecting Choices® program which aim to engage individuals across the age and health spectrum in ACP and utilizes non-physician facilitators as a part of the ACP process . Such efforts may better prepare patients to have discussions with their family physicians regarding ACP and their specific health situation, reducing the need for multiple time- intensive visits.
The finding that patients were concerned about how an ACP discussion might affect their relationship with their family physician suggests that efforts are needed to normalize such discussions as part of routine clinical care for the patient and for the practitioner. We found that patients worry about disagreeing with the family doctor, being ‘unduly influenced’ by an ACP discussion, and taking too much of the ‘doctor’s time’. This stands in stark contrast to the commitment to patient-centredness which rests at the core of the doctor-patient relationship in family medicine [4, 6]. Family physicians may need to be attuned to these concerns expressed by patients and reassure patients of the advisory role that the family physician plays in facilitating patients to make fully informed decisions that are in keeping with the patient’s own values and goals.
Strengths and limitations
A strength of this study is that it was conducted across multiple family practices and geographies. The free text nature of our questions allowed for additional information to be gathered to elaborate on the previously reported categorical responses to questions about ACP behaviours . The themes derived from the data could guide the creation of closed-ended response options in future questionnaires assessing ACP engagement and barriers.
Our study also has limitations. Not all participants provided responses to the open-ended questions and we cannot be certain that the results would represent the views of all participants. In addition, participants self-completed the survey and we were unable to ask for clarification of ideas expressed and most responses were short. The participating practices and patients were not randomly selected, which may reduce generalizability. In addition, the patients were required to speak and understand English, and only 12% identified themselves as other than white/Caucasian, which is not representative of the contemporary Canadian population .
Finally, the definition of ACP which was provided to patients “reflection, deliberation, and determination of a person’s values and wishes or preferences for future treatments at the end-of-life” may have directed their attention towards considering ACP as something one only considers near the end of life. The newer consensus definition from 2017: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care”  may have yielded different responses.