Carolyn Tayler

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.

Conceptual foundations of a palliative approach: a knowledge synthesis

BackgroundMuch of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A “palliative approach” has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity.MethodsWe conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to “palliative care” and “chronic life-limiting conditions” were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach.ResultsThe following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care.ConclusionOur findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.

The Development and Validation of a Questionnaire to Audit Advance Care Planning

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.

Validation of quality indicators for end-of-life communication: results of a multicentre survey

BACKGROUND: The lack of validated quality indicators is a major barrier to improving end-of-life communication and decision-making. We sought to show the feasibility of and provide initial validation for a set of quality indicators related to end-of-life communication and decision-making. METHODS: We administered a questionnaire to patients and their family members in 12 hospitals and asked them about advance care planning and goals-of-care discussions. Responses were used to calculate a quality indicator score. To validate this score, we determined its correlation with the concordance between the patients’ expressed wishes and the medical order for life-sustaining treatments recorded in the hospital chart. We compared the correlation with concordance for the advance care planning component score with that for the goal-of-care discussion scores. RESULTS: We enrolled 297 patients and 209 family members. At all sites, both overall quality indicators and individual domain scores were low and there was wide variability around the point estimates. The highest-ranking institution had an overall quality indicator score (95% confidence interval) of 40% (36%–44%) and the lowest had a score of 18% (11%–25%). There was a strong correlation between the overall quality indicator score and the concordance measure (r = 0.72, p = 0.008); the estimated correlation between the advance care planning score and the concordance measure (r = 0.35) was weaker than that between the goal-of-care discussion scores and the concordance measure (r = 0.53). INTERPRETATION: Quality of end-of-life communication and decision-making appears low overall, with considerable variability across hospitals. The proposed quality indicator measure shows feasibility and partial validity. Study registration: ClinicalTrials.gov, no. NCT01362855

Embedding a Palliative Approach in Nursing Care Delivery: An Integrated Knowledge Synthesis

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration.

ENGAGEMENT IN ADVANCE CARE PLANNING: DO REGION-WIDE INTERVENTIONS WORK?

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 χ2 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.

Passion, persistence and pennies

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 Lets 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 FHAs Lets 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.