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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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.