The 2018 CHPCA Learning Institute ran from June 14-16, 2018 in Ottawa. For the first time in the Learning Institute’s history, one of the streams of the institute was dedicated to ACP. The stream had a primary focus on partnership building, as suggested by the title: “ACP in Canada: Engaging in this Movement as Clinicians and Community Partners – A Practical Experience.” The stream’s faculty was composed of six powerhouse ACP experts from across the country who educate the public and professionals about the importance of ACP. The main objective of the stream was to collaboratively develop ideas for a national partnership framework, which would provide guidance for building relationships between ACP champions in health care and in community-based settings.
We had a room full of keen participants unfazed by the challenge of bridging the worlds of the clinic and the community. Their creative and perspicacious minds were brought to the challenge through a range of interactive exercises, like an abbreviated world café, a patch-the-net exercise, and a scenario imagining each of us are shipwrecked. The stream covered a broad landscape of public perceptions and uncertainties about ACP, barriers and ambiguity around clinical roles in facilitating conversations, and systemic changes needed to normalize the process. The faculty presented on different tools, models, and approaches they use to spark conversations, the cornerstone of ACP. We left the institute inspired and informed of innovative ways to tear down the silos of responsibility toward a better connected and supported culture of talking about our values and wishes.
We’d like to share some of those learnings and ideas from the stream that really call out the status quo and promote a sea change in our approach to ACP. As we think about how to collaborate together—as professionals, as teams, as communities—these kernels of reflection can offer us direction in the particular challenges we may face.
- “How you set it up really matters.” In the stream, we talked about how resistance to ACP conversations is often due to how it is framed or situated. Too often within the culture of health care, for example, the end of life is perceived as a result of failed medicines, as a disappointment of the promise of cure. Many clinicians (and patients alike) feel uncomfortable talking about ACP because of this—it admits that perceived future disappointment. But by reframing the topic in a way that emphasizes it as care, and its purpose as person-centred care, we may open the door for clinicians to see their roles within it. The importance of ACP depends in part on who we’re talking to and their orientation; part of the work of education is to locate ACP within the orientation of our audiences, to find its place within the values they hold dear. Set up conversations in a way that resonates with and even fosters such values.
- “If it’s one person’s job, it’s no one’s job. If it’s everyone’s job, it’s no one’s job.” This phrase expresses the fine line between the silo of specialization and the ether of dispersed responsibility. If the task of facilitating conversations is put on one set of shoulders, it can allow everyone else to walk away from an issue that needs to be front and centre to all care—what matters to the person and what is at stake for them in the care they receive or don’t receive. Everyone who may be involved in that person’s care should be aware of what matters to them. However, to just say “everyone should…” is a weak way to change culture because the call is too vague, too broad, and lacking in clear direction or procedure for how to make it everyone’s concern. We need to take a team-based approach to ACP, wherever the conversations may be taking place. And every team has people who take on different roles—some lead the planning, some provide support for it, some are there only to listen. Substitute decision makers may have a much more active role than others when the time comes. Each team needs to discuss these roles and agree on who will take on which ones. The danger is in the defaults—assuming instead of coordinating.
- “Start young! This is what you need to be an adult.” There are many rites of passage into adulthood that younger people are encouraged to engage in. Over time, they may be expected to do all sorts of planning for their future—financial planning, family planning, education and career planning, retirement planning, and so on. For the most part, emerging adults are aware of these and know the consequences of not engaging in them. They know, for example, that not having a will can create conflict and hurt feelings among those who have to handle their affairs after they die. But few people know about ACP, even though making decisions about a person’s care can breed just as much frustration, doubt, and dispute as handling their affairs post-mortem. In order to normalize ACP for the generations to come, it needs to be placed within the typical group of rites for entering adulthood and supported by social encouragements, like completing an advance directive upon high school graduation or expanding the organ donor prompts when renewing a driver’s licence.