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

AbstractContextThe 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.ObjectivesThe purpose of this study was to develop quality indicators related to EOL communication and decision making.MethodsWe 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.ResultsAbout 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.ConclusionWe 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

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

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

Clinicians’ experiences implementing an advance care planning pathway in two Canadian provinces: a qualitative study

Abstract Background Advance care planning (ACP) is a process which enables patients to communicate wishes, values, fears, and preferences for future medical care. Despite patient interest in ACP, the frequency of discussions remains low. Barriers to ACP may be mitigated by involving non-physician clinic staff, preparing patients ahead of visits, and using tools to structure visits. An ACP care pathway incorporating these principles was implemented in longitudinal generalist outpatient care, including primary care/family medicine and general internal medicine, in two Canadian provinces. This study aims to understand clinician experiences implementing the pathway. Methods The pathway was implemented in one family practice in Alberta, two family practices in British Columbia (BC), and one BC internal medicine outpatient clinic. Physicians and allied health professionals delivered structured pathway visits based on the Serious Illness Conversation Guide. Twelve physicians and one social worker participated in interviews or focus groups at the end of the study period. Qualitative data were coded inductively using an iterative approach, with regular meetings between coders. Results Clinicians described experiences with the ACP care pathway, impact at the clinician level, and impact at the patient level. Within each domain, clinicians described barriers and facilitators experienced during implementation. Clinicians also reflected candidly about potential for future implementation and the sustainability of the pathway. Conclusions While the pathway was implemented slightly differently between provinces, core experiences were that implementation of the pathway, and integration with current practice, were feasible. Across settings, similar themes recurred regarding usefulness of the pathway structure and its tools, impact on clinician confidence and interactions with patients, teamwork and task delegation, compatibility with existing workflow, and patient preparation and readiness. Clinicians were supportive of ACP and of the pathway. Trial registration The study was prospectively registered with clinicaltrials.gov (NCT03508557). Registered April 25, 2018. https://classic.clinicaltrials.gov/ct2/show/NCT03508557

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

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

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

Plain English summary: The paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include: In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailty Engagement opportunities need to be flexible (e.g., location, time, type) Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessary The education and training of citizens, health and social care providers, and researchers on engagement practices Patient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planning Influencing 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.Other UBCNon UBCReviewedFacult

Additional file 1: of Recognizing difficult trade-offs: values and treatment preferences for end-of-life care in a multi-site survey of adult patients in family practices

Questionnaire asking patients about engagement in advance care planning. (DOCX 37 kb

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

PurposeOnline 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.MethodsWe 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.ResultsIn 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.ConclusionsImplementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients

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

Abstract 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