Advance care planning in British Columbia: awareness and engagement (2012-2020).

OBJECTIVES: This study examines trends in advance care planning (ACP) awareness, engagement, attitude and experiences among the public in British Columbia (BC), Canada, from 2012 to 2020. This time period is of relevance as it includes provincial education initiatives. We also explored demographic characteristics associated with lower ACP awareness and engagement, to inform future initiatives. METHODS: Longitudinal data from two provincial polls in 2016 and 2020, along with BC-specific data extracted from a national poll in 2012, were analysed to investigate ACP awareness, engagement and attitudes. Demographic characteristics associated with ACP were examined using binomial and ordinal logistic regression. RESULTS: We observed an increase in awareness of ACP between 2012 and 2020 (from 15.2% to 32.9%). A significant rise in engagement was also observed, with more respondents reporting ACP conversations with healthcare providers between 2016 and 2020 (8.8%-14%) and documenting their healthcare wishes since 2012 (11.6%-28.0%). Demographic analysis revealed that older, female and more educated individuals were more likely to participate in ACP activities. CONCLUSIONS: This study highlights positive trends in ACP awareness and engagement in BC over the study period. Despite lower rates in some variables, the observed increases suggest increasing awareness over time, with potential for further improvement. However, disparities persist among different demographic groups, highlighting the need for targeted efforts to improve ACP knowledge and participation, especially among younger adults, males, single individuals and those with lower education levels.

A model for community-led peer-facilitated advance care planning workshops for the public.

Background: The core to successful advance care planning (ACP) facilitation is helping people determine their values, beliefs and wishes, and understand substitute decision-making. Recognizing the potential for community members to support public awareness and education we developed a model of ACP education, whereby peer facilitators associated with community organizations host workshops that educate and assist members of the public with ACP. Objectives: Describe the development and evaluation of the model for community-led peer-facilitated ACP workshops for the public. Design: Descriptive mixed methods. Methods: A training curriculum and program model were co-developed with two community organizations that had been successful in delivering ACP workshops independently in their communities. Herein we describe a mixed-methods evaluation of three cycles of implementation and improvement of the model. Results: The model centers on three key concepts; the right content (based around three steps Think, Talk, Plan), the right facilitator, and the right approach. A suite of tools was designed to support the three groups involved in the delivery of the ACP workshops: the public participants, the peer facilitators, and the community-based organizations. The peer-facilitator training addresses the facilitator's learning needs of ACP content knowledge, facilitation skills, and understanding change behavior. Training evaluation data from 106 facilitators confirmed that the curriculum prepared them to facilitate the workshops. Qualitative data revealed that support from organizations with established reputations in their community is critical, with mentoring from more experienced facilitators beneficial. Conclusion: Our model demonstrates the potential of community-led, peer-facilitated ACP initiatives to enhance the capacity of community to upstream ACP conversations. Reaching a broader audience and creating a supportive, inclusive environment for individuals to comfortably learn about ACP can drive the much-needed culture shift to normalize ACP. Meaningful community engagement, empowerment, and partnerships are essential for the successful development and widespread impact of these initiatives.

A model for community-led peer-facilitated advance care planning workshops for the public Why was this study done? Advance care planning (ACP) allows people to reflect on and share their personal values, goals and preferences as they relate to their future healthcare. Despite the benefits of doing ACP, the number of people who have engaged in ACP remains low. Traditionally, most ways of supporting people to engage in ACP have involved healthcare providers. In British Columbia, two community-based organizations had developed successful peer-facilitated workshops to engage and educate the public. In these workshops, non-expert members of the community (peer-facilitators) conduct interactive workshops that help members of the public understand and begin ACP. What did the researchers do? We partnered with these two organizations to develop a training curriculum and other materials required to spread this approach to other community organizations throughout the province. The model is based on three key concepts: the right content, the right facilitator, and the right approach. The materials include a suite of tools for three groups: the public participants, the peer-facilitators and the organizations. What did the researchers find? The training and suite of tools we developed successfully prepared community members ("peers") associated with community organizations to facilitate ACP workshops for the public. Support from community organizations is essential, and mentoring from more experienced facilitators is beneficial. What do the findings mean? As a provincial organization we were able to successfully partner with community organizations to develop a model and spread the workshops provincially and confirm they were acceptable and effective, improving public access to information about advance care planning.

Community-led, peer-facilitated Advance Care Planning workshops prompt increased Advance Care Planning behaviors among public attendees.

Objective: Despite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors. Methods: Peer-facilitators from 9 community organizations were recruited and trained to deliver free ACP workshops to members of the public with an emphasis on conversation. Using a cohort design, workshop acceptability and engagement in ACP behaviors was assessed by surveying public participants at the end of the workshop and 4-6 weeks later. Results: 217 participants returned post-workshop questionnaires, and 69 returned follow-up questionnaires. Over 90% of participants felt they gained knowledge across all 6 learning goals. Every ACP behavior saw a statistically significant increase in participant completion after 4-6 weeks. Almost all participants were glad they attended (94%) and would recommend the workshop to others (95%). Conclusion: This study revealed an association of peer-facilitated ACP workshops and completion of ACP behaviors in public participants. Innovation: This innovative approach supports investment in the spread of community-based, peer-facilitated ACP workshops for the public as important ACP promotion strategies.

Primary care providers' perceptions on the integration of community-led advance care planning activities with primary care: a cross-sectional survey.

BACKGROUND: Advance care planning (ACP) is a process intended to help ensure people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness. Barriers to implementing ACP in primary care settings exist. Community-led ACP initiatives exist in British Columbia to engage the public directly. These initiatives may help prepare people for conversations with their primary care providers. The objectives of this study were to elicit primary care providers' perceptions of the utility and desired content of community-led ACP activities and suggestions for integrating community-led ACP activities with primary care. METHODS: We conducted an online cross-sectional survey of primary care providers practicing in British Columbia, Canada in 2021. Both quantitative and qualitative survey questions addressed ACP engagement in practice, the perceived role and desired outcomes of community-led ACP activities, and ways to integrate community-led ACP activities with primary care. RESULTS: Eighty-one providers responded. Over 80% perceived a moderate or greater potential impact of community-led ACP activities. The most common reasons for not referring a patient to a community-led ACP activity were lack of awareness of the option locally (62.1%) and in general (44.8%). Respondents wanted their patients to reflect on their values, wishes and preferences for care, to have at least thought about their goals of care and to have chosen a substitute decision maker in the community. They indicated a desire for a summary of their patient's participation and a follow-up discussion with them about their ACP. They suggested ways to integrate referral to programs into existing health care system structures. CONCLUSIONS: Community-led ACP activities were perceived to be useful to engage and prepare patients to continue ACP discussions with clinicians. Efforts should be made to establish and integrate community-based ACP initiatives within existing primary care systems to ensure awareness and uptake.

"Now I get what's important" - Shifting philosophies of hospice society staff and trained volunteers involved in peer-facilitated Advance Care Planning workshops for the public.

OBJECTIVE: Community-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches. METHODS: Content analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators. RESULTS: Three main categories emerged: 1) ACP is about 'Living well'; 2) Transitioning focus from legal forms to conversations; 3) Benefits to all involved. CONCLUSIONS: Community staff and volunteers acknowledge the role they could play in promoting ACP in their communities. They recognize the benefits to the facilitators and public participants from following a community-led approach that emphasizes the importance of ACP conversations over the completion of relevant legal forms. Additional potential benefits of this approach, as reported by the organizational representatives, are increased volunteer engagement, more community partnerships, and an enhanced organizational profile. PRACTICE IMPLICATIONS: This community-led model can be a meaningful and approachable way to engage the public in ACP. Hospice societies are well positioned in the community to incorporate ACP workshops into their programming.

Building Palliative Care Capacity for Generalist Providers in the Community: Results From the Capaciti Pilot Education Program.

Objective: Primary care providers play an important role in providing early palliative care, however they often lack practical supports to operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to help primary care providers offer an early palliative approach to care. The CAPACITI pilot program consisted of 10 facilitated, monthly training sessions, covering identification and assessment, communication, and engaging caregivers and specialists. We present the findings of an evaluation of the pilot program. Method: We conducted a single cohort study of primary care providers who participated in CAPACITI. Study outcomes were the change in the percentage of caseload reported as requiring palliative care and improved confidence in competencies measured on a 20-item, study-created survey. Pre and post survey data were analyzed using paired t-tests. Results: Twenty-two teams representing 127 care providers (including 36 physicians and 28 Nurse Practitioners) completed CAPACITI. Paired comparisons showed a moderate improvement in confidence across the competencies covered (.6 to 1.3 mean improvement across items using seven-point scales, all P < .05). Pre-CAPACITI, clinician prescribers (N = 32) identified a mean of 1.2% of their caseload requiring a palliative approach to care, which increased to 1.6% post-program (P = .02). Said differently, the total group of paired clinician prescribers identified 338 patients as requiring palliative care in their caseloads at baseline vs 482 patients following the intervention, for an overall increase of 144 patients in their collective caseloads. Conclusion: CAPACITI improved self-assessed palliative care identification and provider confidence in core competencies. The program demonstrated potential for building palliative care capacity in primary care teams.

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

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.

Implementing Advance Care Planning Tools in Practice: A Modified World Café to Elicit Barriers and Recommendations from Potential Adopters.

This paper reports findings from a modified World Café conducted at a palliative care professional conference in 2019, where input on tools to support advance care planning (ACP) was solicited from healthcare practitioners, managers and family members of patients. Barriers to ACP tool use included insufficient structures and resources in healthcare, death-avoidance culture and inadequate patient and family member engagement. Recommendations for tool use included clarification of roles and processes, training, mandates and monitoring, leadership support, greater reflection of diversity in tools and methods for public engagement. This paper illuminates factors to consider when implementing ACP tools in healthcare.

Effect of "Speak Up" educational tools to engage patients in advance care planning in outpatient healthcare settings: A prospective before-after study.

BACKGROUND: Tools for advance care planning (ACP) are advocated to help ensure patient values guide healthcare decisions. Evaluation of the effect of tools introduced to patients in clinical settings is needed. OBJECTIVE: To evaluate the effect of the Canadian Speak Up Campaign tools on engagement in advance care planning (ACP), with patients attending outpatient clinics. Patient involvement: Patients were not involved in the problem definition or solution selection in this study but members of the public were involved in development of tools. The measurement of impacts involved patients. METHODS: This was a prospective pre-post study in 15 primary care and two outpatient cancer clinics. The outcome was scores on an Advance Care Planning Engagement Survey measuring Behavior Change Process on 5-point scales and Actions (0-21-point scale) administered before and six weeks after using a tool, with reminders at two or four weeks. RESULTS: 177 of 220 patients (81%) completed the study (mean 68 years of age, 16% had cancer). Mean Behavior Change Process scores were 2.9 at baseline and 3.5 at follow-up (mean change 0.6, 95% confidence interval 0.5 to 0.7; large effect size of 0.8). Mean Action Measure score was 3.7 at baseline and 4.8 at follow-up (mean change 1.1, 95% confidence interval 0.6-1.5; small effect size of 0.2). PRACTICAL VALUE: Publicly available ACP tools may have utility in clinical settings to initiate ACP among patients. More time and motivation may be required to stimulate changes in patient behaviors related to ACP.

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings.

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Primary care clinicians' confidence, willingness participation and perceptions of roles in advance care planning discussions with patients: a multi-site survey.

BACKGROUND: People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care. OBJECTIVE: The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients. METHODS: We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable. RESULTS: The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4). CONCLUSION: Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.

Staffing a Specialist Palliative Care Service, a Team-Based Approach: Expert Consensus White Paper.

Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada. For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca).

Older patient engagement in advance care planning in Canadian primary care practices: Results of a multisite survey.

OBJECTIVE: To assess primary care patients' engagement in advance care planning (ACP) and predictors of engagement. DESIGN: Cross-sectional survey using a revised version of a validated questionnaire. SETTING: Alberta, Ontario, and British Columbia. PARTICIPANTS: Convenience sample of 20 family practices that provided a consecutive sample of 810 patients aged 50 years and older. MAIN OUTCOME MEASURES: Engagement in ACP activities, and sociodemographic and health-related predictors of having engaged in ACP activities. RESULTS: Patients had a mean age of 66 years (55.6% women). Two-thirds of patients (68.5%; 555) had thought about the kinds of medical treatments they would want or not want if they were sick and in hospital, 52.8% (n = 428) had talked with someone about what they would want, 32.0% (n = 259) had written down their wishes, 50.4% (n = 408) had named someone to be their substitute decision maker, and 23.0% (n = 186) had engaged in all 4 key ACP activities. Of those patients who had talked to someone about medical treatments wanted or not, 17.5% (n = 75) had talked to their family doctors. Age (adjusted odds ratio per 10-year category of 1.55; 95% CI 1.26 to 1.90; P < .001) was significantly associated with having engaged in all ACP activities. CONCLUSION: Many patients have engaged in some ACP activities, but few have discussed ACP with their family physicians. Strategies should be implemented in primary care to reduce the barriers to discussing ACP.

Barriers to and enablers of advance care planning with patients in primary care: Survey of health care providers.

OBJECTIVE: To identify barriers to and enablers of advance care planning (ACP) perceived by physicians and other health professionals in primary care. DESIGN: Cross-sectional, self-administered survey. SETTING: Ontario, Alberta, and British Columbia. PARTICIPANTS: Family physicians (n = 117) and other health professionals (n = 64) in primary care. MAIN OUTCOME MEASURES: Perceived barriers relating to the clinician, characteristics of patients, and system factors, rated on a 7-point scale from 0 (not at all) to 6 (an extreme amount), and enablers reported using an open-ended question. RESULTS: Between November 2014 and June 2015, questionnaires were returned by 72.2% (117 of 162) of family physicians and 68.8% (64 of 93) of the other health professionals. Physicians rated insufficient time, inability to electronically transfer the advance care plan across care settings, decreased interaction with patients near the end of life owing to transfer of care, and patients' difficulty understanding limitations and complications of treatment options as the highest barriers. Other health professionals additionally identified their own lack of knowledge and difficulty accessing the physician as barriers. Themes identified as enablers included greater public engagement, clinician attitudes, creating capacity for clinicians, integrating ACP into practice, and system and policy supports. CONCLUSION: In primary care, there are barriers to engaging patients in ACP at the patient, provider, and system levels that could potentially be addressed through the informed development of multifaceted interventions.

Recognizing difficult trade-offs: values and treatment preferences for end-of-life care in a multi-site survey of adult patients in family practices.

BACKGROUND: Decisions about care options and the use of life-sustaining treatments should be informed by a person's values and treatment preferences. The objective of this study was to examine the consistency of ratings of the importance of the values statements and the association between values statement ratings and the patient's expressed treatment preference. METHODS: We conducted a multi-site survey in 20 family practices. Patients aged 50 and older self-completed a questionnaire assessing the importance of eight values (rated 1 to 10), and indicated their preference for use of life-sustaining treatment (5 options). We compared correlations among values to a priori hypotheses based on whether the value related to prolonging or shortening life, and examined expected relationships between importance of values and the preference option for life-sustaining treatment. RESULTS: Eight hundred ten patients participated (92% response rate). Of 24 a priori predicted correlations among values statements, 14 were statistically significant but nearly all were negligible in their magnitude and some were in the opposite direction than expected. For example, the correlation between importance of being comfortable and suffering as little as possible and the importance of living as long as possible should have been inversely correlated but was positively correlated (r = 0.08, p = 0.03). Correlations between importance of values items and preference were negligible, ranging from 0.03 to 0.13. CONCLUSIONS: Patients may not recognize that trade-offs in what is most important may be needed when considering the use of treatments. In the context of preparation for decision-making during serious illness, decision aids that highlight these trade-offs and connect values to preferences more directly may be more helpful than those that do not.

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy.

PLAIN ENGLISH SUMMARY: The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care. ABSTRACT: Older adults are the fastest growing segment of Canada's population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that account for the complex and chronic needs that accompany frailty. In this review, we summarize existing literature on engaging older adults living with frailty and their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement, and ethical and cultural factors and implications. Although this review is mainly focused on Canada it is likely to be broadly applicable to many of the health systems in the developed world where aging and frailty pose important challenges.

A Knowledge Translation Project on Best Practices in End-of-life Care.

This is a knowledge translation project to promote the uptake of best practices in end-of-life (EOL) care within the primary care setting in British Columbia (BC) through the use of tools embedded into electronic medical records (EMRs). The knowledge-to-action model is used to engage primary care providers in co-designing, adopting and evaluating the EOL care toolkit built for 3 EMRs. The toolkit has a set of EMR-specific data entry templates, query/report functions and access to additional downloadable resources. It is based on the EOL learning module designed and offered by the BC General Practice Services Committee's Practice Support Program to improve EOL care by primary care providers in the province. Our web-based distribution method allows providers to download and install the toolkit then take part to evaluate its use and impact. Initial feedback from phases 1-3 (of 4) has been favorable and has led to iterative improvements.

Improving End-of-Life Communication and Decision Making: The Development of a Conceptual Framework and Quality Indicators.

CONTEXT: The goal of end-of-life (EOL) communication and decision making is to create a shared understanding about a person's values and treatment preferences that will lead to a plan of care that is consistent with these values and preferences. Improvements in communication and decision making at the EOL have been identified as a high priority from a patient and family point of view. OBJECTIVES: The purpose of this study was to develop quality indicators related to EOL communication and decision making. METHODS: We convened a multidisciplinary panel of experts to develop definitions, a conceptual framework of EOL communication and decision making, and quality indicators using a modified Delphi method. We generated a list of potential items based on literature review and input from panel members. Panel members rated the items using a seven-point Likert scale (1 = very little importance to 7 = extremely important) over four rounds of review until consensus was achieved. RESULTS: About 24 of the 28 panel members participated in all four rounds of the Delphi process. The final list of quality indicators comprised 34 items, divided into the four categories of our conceptual framework: Advance care planning (eight items), Goals of care discussions (13 items), Documentation (five items), and Organization/System aspects (eight items). Eleven items were rated "extremely important" (median score). All items had a median score of five (moderately important) or greater. CONCLUSION: We have developed definitions, a conceptual framework, and quality indicators that researchers and health care decision makers can use to evaluate and improve the quality of EOL communication and decision making.

What do Canadians think of advanced care planning? Findings from an online opinion poll.

BACKGROUND: Advance care planning (ACP) has the potential to increase patient-centred care, reduce caregiver burden, and reduce healthcare costs at the end of life. Current levels of public participation in ACP activities are unknown. The purpose of this study was to determine the level of engagement of average Canadians in ACP activities. METHODS: Data come from an on-line opinion poll of a national sample of respondents who were asked five questions on ACP activities along with their sociodemographic characteristics. RESULTS: Respondents were from all provinces of Canada, 52% were women, and 33% were between 45 years and 54 years of age. Of 1021 national sample respondents, 16% were aware of the term, ACP (95% CI 13% to 18%), 52% had discussions with their family or friends (95% CI 49% to 55%), and 10% had discussions with healthcare providers (95% CI 8% to 12%). Overall, 20% (95% CI 18% to 22%) of respondents had a written ACP and 47% (95% CI 44% to 50%) had designated a substitute decision maker. Being older was associated with significantly more engagement in ACP activities and there were significant differences in ACP engagement across Canada. CONCLUSIONS: Although only a small proportion of Canadians are aware of the formal term, ACP, a higher percentage of Canadians are actually engaged in ACP, through either having discussions or making decisions about end-of-life care. Older citizens are more likely to be engaged in ACP and there are geographic differences in the level of ACP engagement across Canada.