Doris Barwich

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.

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 summaryThe 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.AbstractOlder 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 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.

Beyond resuscitate and do-not-resuscitate

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

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

BackgroundDecisions 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.MethodsWe 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.ResultsEight 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.ConclusionsPatients 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.

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.

When and how to die

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!”