How to increase public participation in advance care planning: findings from a World Café to elicit community group perspectives

Advance care planning (ACP) 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. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness [1]. As such, ACP is a key component of achieving person- and family-centred healthcare. ACP has been shown to improve quality of life and end of life care for individuals, to reduce decision-making burden, suffering and bereavement distress of family members, and to improve efficiency and cost shifting within the healthcare system as a whole [2‐4]. Alberta, Canada is a Western Canadian province with a population of 4 million residents, and our provincial healthcare system broke new ground in having the first province-wide policy and procedure for ACP [5], initiated in 2014. This includes a medical order framework, called Goals of Care Designations (GCD), for communicating a person’s goals and guiding the associated approach to his/her medical care. GCD replaced less nuanced medical orders such as “Do Not Resuscitate.” However, despite the provincial rollout of the policy and the healthcare system’s efforts to socialize it, to date public participation and awareness of ACP and GCD remains limited (only 27% of Albertans have heard of ACP) [6]. To catalyze new community engagement in ACP activities and awareness, the Advance Care Planning Collaborative Research and Innovation Opportunities research program (ACP CRIO) hosted two World Café events to learn from community members “How can we help Albertans learn about and participate in Advance Care Planning?”

Despite increasing international consensus on the benefits of ACP [15], low levels of public engagement in ACP remain a concern [15]. With aging populations giving rise to an increase in chronic disease, disability and dementia, earlier engagement in ACP is essential. In its landmark Dying in America report, the Institute of Medicine championed a “whole-community” approach to the promotion of ACP [16]. Similarly, Fried and Drickamer posit that garnering public support for and participation in ACP requires increasing public awareness of ACP through broad outreach [17]. Preparing community organizations with the tools they need to facilitate engagement in ACP in their communities was identified as a key goal by the Canadian ACP Task Group [18], and we see this as an integral step in promoting and sustaining public participation in ACP beyond the reach of our academic and healthcare organizations. We hypothesized that community groups (e.g. social, recreational, faith-based, disease support) would be particularly attractive targets for health promotion activities from sustainability, cost effectiveness and social diffusion perspectives. Based on the social nature of ACP and the universality of aging, illness and dying, it is well suited to group engagement.

The World Café method was a valuable forum for gathering input from community group members on how to increase public participation in ACP. To the best of our knowledge, this has not been reported previously, although other methods of engaging community groups in ACP have been described [19‐24]. In general, we identified broad support for community groups to help promote ACP in Alberta. The main concerns of participants regarding sharing ACP with Albertans pertained to process issues, public awareness/knowledge of the topic, legal concerns and emotional concerns, among other issues. Many of these concerns could potentially be alleviated by widespread education efforts, provision of resources, and community group training and facilitation opportunities. This is supported by our finding that the majority of qualitative comments mapped to the Physical Opportunity and Psychological Capability domains, indicating a need for more/easier access to physical resources (e.g. Green Sleeves, personal directives, newsletter content, access to speakers and/or facilitators) and the knowledge/psychological skills to support ACP engagement. Some of these identified community needs are already being addressed and have evidence of their efficacy, for example group, public education sessions on ACP are offered by health services educators in Alberta and elsewhere [25‐30]. Nevertheless, some issues would be harder to address at the community group level (e.g. healthcare provider time constraints), and would require multi-faceted interventions with multiple stakeholders and healthcare systems, beyond the provision of education and resources. Community organizations are positioned to raise awareness around the topic of ACP, and can encourage people to converse with their healthcare providers for ACP discussions. However, those healthcare providers and the systems of care need to be able to respond with skilled facilitative communication, including eliciting a person’s values and priorities, sharing prognosis, potential illness trajectories and outcomes, and having these conversations and plans accessible when they need to be reviewed at the point of care.

Participants were keen to suggest ways in which their community organizations could help share ACP with their members, which primarily involved education and training opportunities and provision of resources. These results are similar to those of Matthiesen et al., who found that community organizations were keen to engage with the issue of end of life care conversations, but needed accessible information and resources [19]. Outreach efforts to raise public awareness, and education for both the public and community group members, were also seen as priority areas for ensuring active community engagement work [19]. Many additional suggestions to improve community engagement in ACP put forth by our World Café participants are echoed in the work of other community engagement initiatives, such as simplifying language and forms [21, 24], normalizing conversations over the course of one’s life [20], and educating and financially compensating healthcare providers [20].

This World Café activity constitutes one part of a larger body of work by the ACP CRIO research program to explore Albertans’ perspectives and readiness for participation in ACP. The findings from this World Café are generally consistent with the results of our studies exploring ACP with patients, families and healthcare providers in several clinical settings and with the public in different sociocultural contexts. For example, interviews and focus groups with members of Calgary, Alberta’s South Asian communities revealed several common themes and suggestions, such as providing more educational opportunities in the community, making resources more widely available in community settings, using personal narratives and linking ACP with life events [31]. A synthesis of the findings from interviews with patients, family members and healthcare providers in renal/heart failure, cancer, and supportive living settings echo the recommendations to make use of personal experiences to increase personal relevance and understanding, to raise ACP awareness among the general public so that people are better prepared for ACP conversations, and to better prepare and support healthcare providers to engage in ACP with their patients. Finally, our recent survey of Alberta lawyers highlighted their concerns about lack of client preparedness for ACP and identified lawyers’ desire for more informational resources [32]. These consistent findings support a need for action in our communities to help normalize participation in ACP, as a first step toward ensuring people receive medically appropriate healthcare that is most concordant with their wishes and values.

Participant input across the World Cafés was used to generate eight recommendations for engaging Albertans in ACP. The recommendations generated vary in scope, cost and feasibility but a common theme is a need for cross-sector collaboration. Some recommendations are tangible and require minimal investment e.g. creation and dissemination of a series of “ready to use” newsletter pieces on the why, what and how of ACP for use by community groups. Using stories and personal reflection speaks to the content and method of ACP messaging. Other recommendations are more multi-jurisdictional e.g. standardizing terminology for legal documentation across Canada. These recommendations have been shared widely with a variety of stakeholders, along with which organizations are best placed to act on them. One way to move from these recommendations to action on public engagement in ACP could be the creation of an ACP working group for Alberta with representation from the multiple identified stakeholders. This could be similar to the Community-based Coalition Group model described recently by Waller et al. as part of their community action approach to promote adoption of ACP in the wider community [33]. With appropriate terms of reference and modest funding/resources this group could prioritize the recommendations, create action plans and initiate necessary changes and collaborations across sectors.

The results of this activity suggest that community groups are well placed and keen to help promote ACP beyond the healthcare system. In keeping with the World Café philosophy, which emphasizes moving from talking to taking action, the results of the World Cafés have been used to generate several recommendations for engaging Albertans in ACP.