Part of the solution: A survey of community organisation perspectives on barriers and facilitating actions to Advance Care Planning in British Columbia, Canada

Abstract Background Despite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community‐based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia. Objective This study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits. Design A mixed‐methods design was used. Data were collected through online surveys and telephone interviews. Setting and Participants Staff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study. Results The lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits. Discussion This study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community‐led ACP education should be offered in coordination with the health system. Conclusion Community‐led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia. Public Contribution Study participants, including staff and volunteers at nonprofits, are members of the public.


| BACKGROUND
Advance Care Planning (ACP) is a process that helps adults to reflect on and share their personal values, goals and preferences as they relate to their future healthcare. 1 Ideally, ACP should begin before health crises happen, so that it can inform 'goals of care' conversations and healthcare decision-making throughout the person's journey with illness. The goal of ACP is to help people be prepared to make informed healthcare choices and have their healthcare wishes known and respected. There is a growing body of evidence that ACP is associated with increased patient and family satisfaction, decreased patient anxiety, reduced stress on families and reduced unwanted aggressive treatments and hospital deaths. 2,3 Despite the established benefits of ACP, a 2019 survey conducted by the Canadian Hospice and Palliative Care Association shows that ACP engagement is relatively low among Canadians.
While 80% of survey participants think that it is important to do ACP, only about a third have discussed it with their family, and less than one in ten have talked with a healthcare provider about their wishes.
Additionally, less than 20% of the survey respondents had documented their healthcare wishes. 4 Low rates of ACP engagement are unfortunately not unique to Canada. 5 A recent Australian survey found that only 15% of adults had completed ACP documentation, 6 while studies in Northern Ireland and Singapore found rates of having had an ACP discussion to be 7% and 12.5%, respectively. 7,8 ACP education and conversations have generally been restricted to the health system, but in a recent study, healthcare providers reported insufficient time and their own lack of knowledge as significant barriers. 9 Over the last decade, there has been an increasing recognition of the importance of community engagement in ACP promotion and education. [10][11][12][13] Recent articles highlight the necessity of viewing ACP through a public health lens, and the potential for community-based nonprofits to normalize ACP conversations in the community and integrate it in a more timely manner into peoples' lives. [11][12][13] Throughout this paper, we will define 'non-profits' as community-based nonprofits serving or interested in supporting people affected by serious illness, death or bereavement. Examples of nonprofits in Canada are hospice societies, seniors' centres, ethnocultural societies, faith-based organisations and disease support organisations. These organisations are well connected with the people they serve and well situated in their communities to provide low-cost, widely accessible information and resources about ACP. In addition to delivering ACP education sessions, many of these nonprofits promote ACP through their websites, distribute resources to local clinics and care facilities or host death-positive conversations. The resources and programmes that they offer are well received, as they are tailored to the needs of their local populations and driven by trained volunteers at no or very low cost. Volunteers are integral to the structure and function of many ACP initiatives worldwide. 14 In responses to these questions were collected through an online survey, followed by one-on-one telephone interviews with those who agreed to be interviewed. The surveys and interviews were conducted during June and July 2020. For this paper, we report only on the first two questions, as we believe that the question regarding the COVID-19 pandemic is less likely to be applicable going forward.
Ethics approval was obtained from the University of British Columbia Behavioral Research Ethics Board (H16-00044). Consent was obtained for both the online survey and qualitative interviews.

| Participants
We emailed the invitation and web link to the online survey to 355 contacts of staff or volunteers affiliated with nonprofits based in British Columbia. These nonprofits were identified through two In the invitation, we asked only those organisations actively involved in ACP promotion or education or those with knowledge of ACP issues in their communities to complete the survey. Follow-up telephone interviews were offered to everyone who had completed the survey. Demographic information specific to the nonprofits, but not to the individuals, was collected as we asked each participant to speak from the perspective of their organisation.

| Survey design
We based the survey structure on previously published studies and national frameworks that addressed barriers to and enablers of ACP.
To contextualize the survey items to British Columbian nonprofits and assure content validity and wording clarity, we consulted a pal- The version of the online survey that was sent to nonprofits whose involvement in ACP activities was unknown to us included several additional screening questions at the beginning to ensure that the survey-taker was familiar with ACP needs and issues in their communities. See Appendix SB for both versions of the online survey.

| Interviews
One-on-one telephone interviews were conducted by E. S., a female medical student, with those who indicated in the survey their interest in being interviewed. The purpose of the interviews was to give participants the opportunity to elaborate on their survey responses and articulate barriers and facilitating actions to ACP in their own words. Before beginning the interview, E. S. introduced herself and reviewed the study's objectives with the interviewee. All interviews were recorded with permission, transcribed verbatim and then anonymized. No repeat interviews were undertaken. Field notes were not taken during the interviews, and transcripts were not returned to interviewees for comment. Interviews lasted 14-32 min.
See Appendix SC for the interview script.

| Analysis
Overall rank order for the barriers and facilitating actions questions was determined using a weighted calculation. For example, participants were asked to rank six barriers, so the most important barrier was assigned six points. If one participant ranked a barrier as most important (six points) and another participant ranked the same barrier as the second most important (five points), then it would be assigned a cumulative 11 points. The same system was used for the facilitating actions, with a maximum of eight points. Nonranked items were assigned a zero.
Free-text survey questions and interview transcriptions were analysed using NVivo12. All materials were doubly coded, first deductively using the question options as themes and then again using SIDEN ET AL. | 347 interpretive description and an inductive process. 16 This enabled us to develop a narrative explanation of participants' rankings of barriers and facilitating actions as well as to elucidate any themes outside of these existing categories. Initial coding was performed by E. S., and reviewed by R. C. Following coding, E. S. and R. C. met to discuss and reach consensus on emerging themes. Saturation was deemed to have been reached once no new major themes were being discovered upon coding. 25 3 | RESULTS

| Participant characteristics
Fifty-seven nonprofits completed the online survey, yielding a maximal survey response rate of 16%, although the exact rate cannot be calculated due to snowball sampling. Seventeen (30%) self-selecting survey participants were interviewed. Surveys and interviews were conducted in English only. The characteristics of the participating organisations are summarized in Table 1. Data were not collected as to why some potential participants did not respond.

| Most important barriers to ACP
The rank order for the most important barriers to ACP engagement in British Columbia from the perspectives of nonprofits is shown in Table 2. The top six barriers identified through the qualitative analysis are listed below. While there is considerable overlap with those found in quantitative analysis, several new themes are also introduced.
1. Lack of public awareness (also top-ranked in the quantitative analysis) The public's lack of awareness is the most important barrier to engagement in ACP according to the participants. One participant described that, before she began ACP education, 'people hadn't heard of it. They didn't know what it was' This was felt to be particularly true for new immigrants, whose home countries may have had different processes and cultures surrounding healthcare decision-making.

Emotional barriers (also top-ranked in the quantitative analysis)
The public's discomfort with discussing end-of-life matters was described as a major barrier to ACP. Many described a culture of 'denial, simply not wanting to go there'. When people in this death-denying culture were forced to confront their mortality, they often did so with fear. Occasionally, this fear provided a catalyst for ACP discussions:  3. Confusing terminology and complicated process (also top-ranked in the quantitative analysis) The terminology used in ACP information materials and guidebooks was often confusing to members of the public and contributed to a lack of understanding. Participants noted that 'a lot of people get quite flustered by the terminology', which seemed to change frequently, involved legal jargon and was inconsistent between provinces. The ACP process was also thought to be too complicated and involve many steps. This made it challenging to complete for members of the public.
Many participants also indicated that the length and complexity of the current provincial ACP guide were 'overwhelming', and a barrier to the public's engagement with ACP. However, because of the legal nature of the documents involved with ACP, participants still felt obligated to use it.

4.
Belief that ACP is a one-time conversation to specify medical orders (also top-ranked in the quantitative analysis) Healthcare providers, especially physicians, were described as The complex terminology involved with ACP is hard to understand 60 18 (32) Healthcare provider lack of time 56 25 (44) Belief that planning for or discussing death brings bad luck or is taboo 36 12 (21) Healthcare provider lack of tact or conversation skill 33 12 (21) Healthcare provider lack of knowledge 29 13 (23) Mistrust of the medical system 28 11 (19) Lack of family with whom to discuss wishes 27 16 (28) People do not speak English and do not have access to ACP resources in their own language 19 6 (11)

| Most important facilitating actions
The list of actions ranked by study participants as high-priority facilitating actions to ACP are shown in Table 3, and a complete list is Many nonprofits wished that the current provincial ACP guide included clearer and simpler messages and easier steps. Given its official nature, the provincial guide was seen as the ACP resource that they 'should' be using, despite its non-user-friendly nature.

Improve ACP literacy (also top-ranked in the quantitative analysis)
Through the qualitative analysis, participants reported that  It should be all electronic right now. And the Advance Care Plan stuff isn't yet in the electronic filing system.

5.
Integrate ACP conversations into the scope of practice for all healthcare providers (also top-ranked in the quantitative analysis) Approaching ACP as a conversation, instead of as a form or a checkbox-'[letting] people start wherever they're going to start thinking about their end'-, was also seen as a beneficial and potentially more accessible means of conducting ACP. Doing so can allow not only the individual but also their family to contemplate the meaning and importance of their life and their values. Additionally, framing ACP as a conversation was thought to make ACP more accessible to some healthcare professionals, as well as to people who are mistrustful of institutional settings. ACP conversations initiated by family physicians were '[viewed] with a different lens [than those with non-profits] because it's such a trusting, authoritative place for people, within their care'. Physicians' support for and initiation of the ACP conversation were felt to be crucial, especially for some minority groups, who may be more inclined to follow a doctor's recommendations than that of a community organisation.
6. Better collaboration between the health system and nonprofits

| DISCUSSION
This study is among the first to rank barriers and facilitating actions to public engagement in ACP from the perspectives of nonprofits. A few studies, including one British Columbian study, have included nonprofits among others in their explorations of stakeholders' perspectives on end-of-life and ACP, but none rank the importance of the identified barriers or enablers. 10,12,27,28 Others have ranked barriers and facilitating actions to ACP, but from the perspectives of healthcare providers or the public only. 9 The barriers and facilitating actions that nonprofits identified in our study as 'most important' were also found to be important in studies focusing on the perspectives of the public. 12 and 'more resources to provide guidance on ACP' were chosen as the items that would make ACP easier. The only true outlier seems to be the wish for 'more personal time to reflect on my wishes', which may have implications for how much time to schedule between public information activities with more than one session.
In our study, most participants closely associated ACP with endof-life and believed that the discomfort around these conversations was at heart a fear of considering mortality. This correlation of ACP with end-of-life is slightly at odds with recent consensus definitions of ACP, which describe ACP as a process of communicating' personal values, life goals and preferences' for future medical care, including serious and chronic illness. 1,29 'Reframing ACP as part of life planning,' including the engagement of community organisations, has been proposed by several studies as a potential solution to these initial feelings of discomfort, wherever they may originate. [10][11][12]30 Our study confirms that many nonprofits find their role in ACP promotion and education to be a promising solution to the associated emotional barriers, and in par- previous studies that combined public perceptions with those of community organisations may have obscured these viewpoints. 10,12 Collaborations between nonprofits, healthcare systems and academic institutions have been shown to have fairly consistent positive effects. 32 Several international studies suggest positive impacts of these collaborations on public ACP education. 27 27 normalizing ACP and therefore lessening the emotional barriers 11 and sparing the healthcare system time and money. While some participants expressed eagerness to include other nonmedical providers or for-profit organisations, such as lawyers, in the ACP process, others emphasized the unique accessibility provided by nonprofits. However, all these benefits can only be fully realized if other steps also occur, such as an improved provincial ACP guide, better healthcare provider education differentiating medical orders forms from ACP and improved ACP documentation.
The mixed-methods study design allowed us to survey and interview participants from all areas of British Columbia. However, our study does have some limitations. First, as in many qualitative studies, the small sample size and geographic context of our study, including a literature search limited to Canadian literature, may limit the generalisability of our findings. Second, responses to both qualitative and quantitative findings may have been biased by the options that we offered on the survey. Third, we asked organisations to volunteer to fill out our survey and take part in our interviews. It is therefore likely that our sample is biased towards those organisations most invested in ACP, especially given our survey's maximum response rate of 16%.
Our data may not therefore represent the full spectrum of barriers or facilitating actions to ACP or the priorities of nonprofits less experienced in ACP. Fourth, nonprofits supporting ACP in British Columbia are a heterogeneous group, and what is a barrier for one may not apply for another. Our study included a larger number of hospice societies than other organisation types, which may bias our conclusions towards the perspectives of hospice societies. However, the fact that we excluded for-profits in our survey makes our study less heterogeneous than others. [10][11][12] Finally, we conducted our study during the COVID-19 pandemic, which may have influenced responses.

| CONCLUSION
This study identifies numerous opportunities to increase and improve ACP according to non-profits engaging in ACP education in British

Columbia. It offers new insights into ACP from both a British
Columbian and a community lens, and encourages, among other things, greater collaboration with and inclusion of community organisations in the ACP landscape in British Columbia. Findings from this study should be used to inform existing and future ACP policies across the province, and may be used to provide guidance on working with community groups and ACP on a national and international level.
Research into ACP barriers and facilitating actions has largely limited itself to the clinician-patient dichotomy. Further inquiry into the needs of nonprofits, as the 'middle men' in ACP education, will be necessary to fully incorporate them into ACP processes. The inclusion of these 'new' voices can continue to offer novel and effective ways to increase and improve ACP in British Columbia and beyond.