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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.

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.

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.

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.

The increasing professionalization and specialization of palliative care over the last 40 years has had enormous impact and benefit for millions, especially with respect to symptom management. However, it may have also inadvertently created an expectation that all palliative care needs can and should be met through improving access to health services. Given the inherently social nature of dying, there is an urgent need to embrace palliative care as a public health issue and adopt models and approaches that allow communities, service delivery organizations, and policymakers to work together to improve well-being and quality of care, not just at end of life, but throughout the serious illness journey.

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.

A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD glomerular filtration rate categories 4 and 5 (G4-G5) across a provincial kidney care network during the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for 4 pillars of palliative care to guide our work: (1) patient identification, (2) advance care planning, (3) symptom assessment and management, and (4) caring of the dying patient and bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through the use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care across the continuum from nondialysis to dialysis populations.

Background People who engage in advance care planning (ACP) are more likely to receive healthcare that is concordant with their goals and wishes at the end of life. Primary care providers are ideally positioned to facilitate ACP. This study sought to describe the confidence, willingness and participation of primary care clinicians to have advance care planning discussions. Methods We conducted a survey of family physicians and allied health professionals (AHP)in primary care in three Canadian provinces. We asked about willingness and confidence to have ACP discussions and current participation on Likert-type scales (0=not at all, 6=an extreme amount). A modified Dillman approach was used for online survey administration. Results The response rate was 72% (n=117) among physicians and 69% (n=62) among allied health professionals. Most physicians (77%) were practicing in an interprofessional practice. The mean willingness to initiate ACP was 5.0 for physicians and 4.8 for AHP. Mean confidence ratings for initiating ACP was 4.8 for physicians and 3.5 for AHP. Current participation in ACP among patients aged 50 years and older was lower; 2.6 for physicians and 1.4 for AHP. Conclusions The willingness of family physicians and AHP in primary care to initiate ACP discussions with patients is high. However, confidence is only moderate in AHP and actual activity is low for all clinicians. Efforts to remove barriers in primary care and provide support for AHP to improve their confidence to engage in ACP discussions should be priorities.

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.

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).

To assess primary care patients' engagement in advance care planning (ACP) and predictors of engagement.Cross-sectional survey using a revised version of a validated questionnaire.Alberta, Ontario, and British Columbia.Convenience sample of 20 family practices that provided a consecutive sample of 810 patients aged 50 years and older.Engagement in ACP activities, and sociodemographic and health-related predictors of having engaged in ACP activities.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;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.

To identify barriers to and enablers of advance care planning (ACP) perceived by physicians and other health professionals in primary care.Cross-sectional, self-administered survey.Ontario, Alberta, and British Columbia.Family physicians (n = 117) and other health professionals (n = 64) in primary care.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.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.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.

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.

This chapter describes how advance care planning (ACP) is being implemented in Canada. It highlights the use of an organizing National Framework for Advance Care Planning and a recent conceptual framework of end-of-life communication and decision making. A feature of the Canadian landscape are networks of collaboration and partnerships including research and non-governmental organizations, and examples of regional and national initiatives are presented in the boxes. A summary is provided of barriers, facilitators, the cultural milieu, and future opportunities for ACP in Canada. Implementation of ACP in Canada has followed a multi-faceted approach, with significant national leadership, key stakeholder participation and consumer engagement strategies, with important outcomes demonstrated.

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.

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.

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.

Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. The purpose of this qualitative study was to describe factors influencing family caregivers' ability to cope with providing such care. An interpretive descriptive research design guided this study. Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.

The ethics of honouring an individual's wishes for health care are clear and unequivocal in health care literature and policy. Yet health care providers are often unsure how to proceed, both in initiating an advance care planning conversation and in respecting an advance directive once a person is no longer capable of communicating. While advance directives are supported under the Canadian common law, provincial legislation differs across the country, and can create barriers to effective advance care planning. The purpose of this article is to describe an advance care planning project undertaken by a large Canadian health authority that shifted the focus away from the document and onto the conversation. Fraser Health's " Let's Talk " initiative promotes the importance of advance care planning conversations while adults are healthy and capable and supports health care professionals in facilitating these conversations. This article will also address the system barriers and broad implementation challenges faced in the context of the Canadian health care and legal environment.

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.

We applaud Hebert and Selby[1][1] for examining the difficulties of responding to iatrogenic or potentially readily reversible critical incidents in patients with a do-not-resuscitate order. Several Canadian health authorities have already replaced do-not-resuscitate orders with more nuanced medical

Importance Advance care planning can improve patient-centered care and potentially reduce intensification of care at the end of life. Objectives To inquire about patients' advance care planning activities before hospitalization and preferences for care from the perspectives of patients and family members, as well as to measure real-time concordance between expressed preferences for care and documentation of those preferences in the medical record. Design Prospective study. Setting Twelve acute care hospitals in Canada. Participants Elderly patients who were at high risk of dying in the next 6 months and their family members. Main Outcome Measures Responses to an in-person administered questionnaire and concordance of expressed preferences and orders of care documented in the medical record. Results Of 513 patients and 366 family members approached, 278 patients (54.2%) and 225 family members (61.5%) consented to participate. The mean ages of patients and family members were 80.0 and 60.8 years, respectively. Before hospitalization, most patients (76.3%) had thought about end-of-life (EOL) care, and only 11.9% preferred life-prolonging care; 47.9% of patients had completed an advance care plan, and 73.3% had formally named a surrogate decision maker for health care. Of patients who had discussed their wishes, only 30.3% had done so with the family physician and 55.3% with any member of the health care team. Agreement between patients' expressed preferences for EOL care and documentation in the medical record was 30.2%. Family members' perspectives were similar to those of patients. Conclusions and Relevance Many elderly patients at high risk of dying and their family members have expressed preferences for medical treatments at the EOL. However, communication with health care professionals and documentation of these preferences remains inadequate. Efforts to reduce this significant medical error of omission are warranted.

In their editorial in CMAJ , Flegel and Fletcher asked, “Are we ready to perform therapeutic homicide?”[1][1] As the professional body representing more than 300 physicians practising palliative medicine, the Canadian Society of Palliative Care Physicians answers with an emphatic, “No!”

Background: Advance Care Planning (ACP) is established as a standard of care in many settings. However, no validated tool exists to measure participants’ perspectives on ACP. The purpose of this study was to develop and validate a questionnaire to assess ACP from the perspectives of patients and their family members, and to pilot the use of this questionnaire in both English and French. Methods: To develop the ACP-specific questionnaire, items were generated from focus groups with health care professionals and face-to-face interviews withhospitalized patients and their families. The items from this novel questionnaire were combined with other validated evaluation instruments and then piloted in English-speaking hospitalized patients who had advanced, life-limiting illnesses and a version for their family members. Revisions were made based on that experience and feedback from content experts and this questionnaire was then piloted in another sample of French-speaking respondents. Results: The novel questionnaire was divided into 2 parts, the first part focusing on ACP activities before admission to hospital (6 questions) and the second part relating to ‘goals of care’ discussions that occur during hospitalization (8 questions). For the English pilot study, the average duration of the entire interview (including consent, baseline demographics and other questionnaires) was 53.1 mins (range 35-80 mins) for patients and 60.8 mins (range 33-125 mins) for family members. English-speaking patients rated the burden of participating in the interview as a mean of 2.8 (Standard Deviation [SD] 1.9, 1=no burden, 10=extreme burden) and family members as 1.9 (SD 1.9). For the French pilot study, the results were similar. Conclusions: This is the first ACP questionnaire to be developed that has face and content validity. Despite a relatively lengthy interview process, the ACP audit process seems feasible and is not associated with undue burden.

There is a lack of evidence to guide constipation management in patients receiving palliative care. Data collection requires the systematic use of validated assessment tools.The objective of this study was to assess the usefulness of the Victoria Bowel Performance Scale (BPS) as an audit tool.Charts were reviewed before and after the implementation of a program to monitor constipation through repeated use of the Victoria Bowel Scale. The program was initiated at three oncology pain and symptom management clinics, four palliative care units, and four residential hospices. An additional "control" palliative care unit introduced new nursing assessment tools without the new scale.The Victoria BPS was recorded at 86% of 192 postimplementation outpatient clinic visits and was easy to use in this setting. Documentation of bowel performance at comparable visits improved from 44% to 66% (P0.001), and the frequency of changes to laxatives increased from 14% to 39% of visits (P0.001). The scale was completed on 21%-55% of inpatient days, and variations in the proportion of recordings being rated as satisfactory between -1 and +1 (possible range from -4 to +4) revealed important deficiencies in bowel care, which led to change in management.The Victoria BPS was found to be an acceptable and a useful bowel function assessment tool, uniquely incorporating the patient's usual bowel function. Modifications to the scale have been made to improve clarity and allow for the expected drop in bowel activity seen in end-of-life care. Considerable educational effort and appropriate organization of the charts are required for optimal implementation. The proportion of revised BPS scores ranging from -1 to +1 is proposed as an indicator of satisfactory bowel management for clinical, audit, and research purposes.

During the last months of life, many people with advanced illness will be living in their homes. Coping with changing symptoms, and ultimately preparing for death, becomes part of daily life. Whether the ill person is at home for days or for months, they depend on family or friends to be primary caregivers, supported by home-based services. However, after physician and home health offices close, many patients and their caregivers are left to cope alone. The authors describe an innovative partnership between B.C. NurseLine (a provincial tele-triage and health information call centre), the British Columbia Ministry of Health and Fraser Health Hospice Palliative Care program that created after-hours access to care for dying patients and their families in one of Canada's largest health authorities. The article outlines how information and communications technology enabled merging the capacity and expertise of B.C. NurseLine with the expertise of specialized community-based palliative care services to achieve outcomes of improved symptom management, decreased visits to emergency rooms and enhanced support for families who are caring for loved ones at home. For nurses caring for home-based patients, there are lessons to be learned about how to maximize technology to create systems that both improve access to care and are sustainable in the future.

Background Prior research suggests that only a small percentage of the general population is involved in ACP. Aim To compare engagement in ACP among the general population of Canadian adults with the engagement among adults in a health authority with a region-wide ACP engagement initiative (Fraser Health (FH), British Columbia). Methods An on-line opinion poll of a nationally representative sample of 1523 respondents including five questions regarding core ACP activities. Pearson χ 2 tests were used to compare the prevalence of ACP in FH and the rest of Canada. Results Compared to the rest of Canada, respondents from FH had higher levels of ACP awareness (20% against 15%, p=0.025) and higher rates of ACP discussions with family and friends (59% against 51%, p=0.004). However, they had lower rates of written ACPs (15% against 20%, p=0.018). Discussion The population of adults in FH tend to talk more with their family and friends about ACP than do adults in the rest of Canada. The fact that a lower number of respondents had written ACPs in FH could be explained by the fact that while FH had engaged professionals and the public around ACP, legislation supporting ACP was only recently declared. Conclusion Engagement with the public by a health authority makes a difference in the levels of ACP awareness and discussions with family and friends. However, regulatory frames need to be in place in order to provide optimal support to ACP interventions.

ACP is an established standard of care in many settings. However, no validated tool exists to evaluate patients9 and their families9 perspectives on ACP. The purpose of this study was to develop and validate a novel questionnaire to evaluate the quantity and quality of ACP from the perspective of a patient and their family member. To develop the questionnaire, items were generated from focus groups with health care professionals and face to face interviews with hospitalised patients. This questionnaire was then piloted and evaluated by a sample of hospitalised patients who had advanced illnesses and their family members. The questionnaire was divided into 2 parts, the first part covering ACP activities before hospital admission (6 questions) and the second part relating to9 goals of care9 discussions that occurred during hospitalisation (8 questions). 27 patients and 24 family members participated in the pilot. All respondents rated the language, clarity, fit, acceptability, and relevance as ‘fair’ to ‘excellent.’ On a 10 point scale where 1=“Not a burden at all” and 10= “Extremely burdensome,” the average (SD) burden score of patients was 2.2 (1.7) and for family members was 1.6 (0.9). Revisions to the questionnaire were made based on the feedback from respondents. We conclude that our questionnaire to evaluate key ACP practices has face and content validity. Our pilot study demonstrates the feasibility and acceptability of this evaluative approach. By auditing ACP practices, from the patient/family perspective, practitioners may gain key insights into how to improve ACP processes in their settings.

Responding to societal demands, the Province of British Columbia legislators began amending its health care consent and personal planning statutes in 2005, with a particular view to strengthen Advance Care Planning and make Advance Directives a legal option. Initial frameworks met with concern by professional and public organisations and feedback was provided to the Attorney General9s office as well as to the Ministry of Health. Province wide consultation with stakeholders informed the new laws which were passed in 2007 and came into force in September 2011. These comprised options for Advance Directives as well as appointment of Substitute Decision Makers (called Representatives). The nature and scope of this collaboration process will be described. Consultations with clinicians, local health care administrators and Advance Care Planning professionals led to a province-wide approach in developing the legislation and regulations, leading to the production of provincially standardised products. These tools include Health Care Provider and Patient and Family guidebooks for developing optional advance care plans, advance directives and representation agreements which do not require lawyer visits. Educational materials (e.g. FAQs, and PowerPoints) have also been developed to educate and upskill health care providers in ACP, and inform them of their responsibilities within the new legislation. This has included the physician community with the development of physician specific materials including a “primer” on the legislation and an ACP video. The process of development of the educational materials and the materials themselves will be shared with participants.

In face-to-face interviews with seriously ill patients and/or their family members, we used a validated questionnaire to assess key components of in-hospital end-of-life (EOL) communication and decision-making at 11 Canadian hospitals. We report preliminary data from 123 seriously ill hospitalised patients (age 80±9 years, mean±SD) and 77 family members (age 62±13 years). Patients rated being comfortable and minimising suffering as 8.8±2.5 (1=not at all important; 10=very important) and avoidance of being attached to machines as 7.5±3.5. Nearly 50% of participants reported that a decision was made in hospital about the use of life-sustaining treatments (LST) in the event of a life-threatening deterioration. However, when patients were asked about EOL communication with their in-hospital care providers, only 8 (6.5%) reported receiving a disclosure of prognosis, 37 (30.1%) received information about comfort measures to control symptoms, 15 (12.2%) were asked what was important to them when considering decisions about EOL care, and 16 (13.0%) had discussed the risks and benefits of life-sustaining treatments (LST) with a physician. In family members who were asked about EOL communication regarding their relative (the patient), 12 (15.6%) received a disclosure of prognosis, 24 (31.2%) received information about comfort measures, 12 (15.6%) were asked what was important to them when considering decisions about EOL care for their relative, and 11 (14.3%) had discussed risks and benefits of LST with a physician. There are many opportunities to improve the quality of EOL communication and decision-making with seriously ill hospitalised patients and their families.

This interactive session will highlight the work of Fraser Healthy Authority (FHA) in British Columbia, Canada over the past 7 years to champion the development, implementation, and dissemination of its Advance Care Planning work for 1.5 million people throughout our system of care – 12 acute cares sites, 7500+ residential/long term care beds, and community programs. The FHA Let9s Talk program, with a passionate commitment to system level change and education, has developed user-friendly, culturally sensitive and easily accessible tools and resources which have been adapted by health and community organizations across Canada, USA and New Zealand for use in their jurisdictions. Our vision has led to a provincial Community of Practice with representatives from government, all BC regional health authorities, disease specific agencies, first responders, as well as the Canadian Hospice Palliative Care Association (CHPCA) ACP Project Task Group to continuously share resources and experiences. We have also been able to influence policy and uptake at a provincial level with a recent decision to adapt the My Voice Workbook and to place FHA9s Let9s Talk DVD in all community libraries. Advocacy has resulted in new Advance Directive legislation which broadens options for documentation and choice at end of life. In partnership with Calgary Health Region, Health Canada and the CHPCA, we have been an important leader to support a National Symposium, Consensus and framework documents, and other initiatives that have promoted a Canadian approach to ACP implementation and a national framework and research agenda.

Fraser Health Authority in British Columbia, Canada serves 1.5 million people, spanning over 12 communities with 26 000 employees and has been a provincial and national leader in advance care planning (ACP) for the past 7 years. Our goal is to continue to promote and enhance ACP across our health system by promoting conversations with patients and families and improving communication and documentation of decision making in all programs of Fraser Health. In June 2010, we embarked on the Talking it Thru: Medical Orders for Scope of Treatment initiative to further embed ACP practices into all programs with key clinicians and populations clearly identified. This presentation will assist learners to gain further understanding of the importance of systematic engagement in order to embed and sustain ACP in large healthcare organizations and to enhance standardized practices for quality patient-centred care at end of life. The End of Life program provides project leadership and supports programs as they assess current practices, identify gaps and opportunities and plan for implementation. Phase One of this 3 year project included engaging programs by identifying leadership, facilitating Focus Groups and helping program leadership plan for implementation. 16 Focus Groups were held with over 200 clinicians. Input from program areas such Aboriginal Health, Home Health, Primary Care and Medicine as well as discipline areas such as respiratory therapists, social workers and hospitalists have proven invaluable to help shape policy, develop tools and resources and to address educational needs.