Search

Abstract: Context: 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. Objectives: The objective of this study was to assess the usefulness of the Victoria Bowel Performance Scale (BPS) as an audit tool. Methods: 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. Results: 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% (P <0.001), and the frequency of changes to laxatives increased from 14% to 39% of visits (P <0.001). 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. Conclusion: 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. [Copyright &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The core to successful advance care planning (ACP) facilitation is helping people determine their values, beliefs and wishes, and understand substitute decision-making. Recognizing the potential for community members to support public awareness and education we developed a model of ACP education, whereby peer facilitators associated with community organizations host workshops that educate and assist members of the public with ACP. Objectives: Describe the development and evaluation of the model for community-led peer-facilitated ACP workshops for the public. Design: Descriptive mixed methods. Methods: A training curriculum and program model were co-developed with two community organizations that had been successful in delivering ACP workshops independently in their communities. Herein we describe a mixed-methods evaluation of three cycles of implementation and improvement of the model. Results: The model centers on three key concepts; the right content (based around three steps Think, Talk, Plan), the right facilitator, and the right approach. A suite of tools was designed to support the three groups involved in the delivery of the ACP workshops: the public participants, the peer facilitators, and the community-based organizations. The peer-facilitator training addresses the facilitator's learning needs of ACP content knowledge, facilitation skills, and understanding change behavior. Training evaluation data from 106 facilitators confirmed that the curriculum prepared them to facilitate the workshops. Qualitative data revealed that support from organizations with established reputations in their community is critical, with mentoring from more experienced facilitators beneficial. Conclusion: Our model demonstrates the potential of community-led, peer-facilitated ACP initiatives to enhance the capacity of community to upstream ACP conversations. Reaching a broader audience and creating a supportive, inclusive environment for individuals to comfortably learn about ACP can drive the much-needed culture shift to normalize ACP. Meaningful community engagement, empowerment, and partnerships are essential for the successful development and widespread impact of these initiatives. Plain language summary: A model for community-led peer-facilitated advance care planning workshops for the public Why was this study done? Advance care planning (ACP) allows people to reflect on and share their personal values, goals and preferences as they relate to their future healthcare. Despite the benefits of doing ACP, the number of people who have engaged in ACP remains low. Traditionally, most ways of supporting people to engage in ACP have involved healthcare providers. In British Columbia, two community-based organizations had developed successful peer-facilitated workshops to engage and educate the public. In these workshops, non-expert members of the community (peer-facilitators) conduct interactive workshops that help members of the public understand and begin ACP. What did the researchers do? We partnered with these two organizations to develop a training curriculum and other materials required to spread this approach to other community organizations throughout the province. The model is based on three key concepts: the right content, the right facilitator, and the right approach. The materials include a suite of tools for three groups: the public participants, the peer-facilitators and the organizations. What did the researchers find? The training and suite of tools we developed successfully prepared community members ("peers") associated with community organizations to facilitate ACP workshops for the public. Support from community organizations is essential, and mentoring from more experienced facilitators is beneficial. What do the findings mean? As a provincial organization we were able to successfully partner with community organizations to develop a model and spread the workshops provincially and confirm they were acceptable and effective, improving public access to information about advance care planning. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

Community-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches. Content analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators. Three main categories emerged: 1) ACP is about 'Living well'; 2) Transitioning focus from legal forms to conversations; 3) Benefits to all involved. Community staff and volunteers acknowledge the role they could play in promoting ACP in their communities. They recognize the benefits to the facilitators and public participants from following a community-led approach that emphasizes the importance of ACP conversations over the completion of relevant legal forms. Additional potential benefits of this approach, as reported by the organizational representatives, are increased volunteer engagement, more community partnerships, and an enhanced organizational profile. This community-led model can be a meaningful and approachable way to engage the public in ACP. Hospice societies are well positioned in the community to incorporate ACP workshops into their programming. • Community-led approaches are being used to increase public engagement in advance care planning (ACP). • Hospice organizations are well positioned in the community to promote ACP. • ACP workshops should focus on conversations rather than legal forms. • Workshops are mutually beneficial to participants, facilitators and organizations. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Letters to the editor are presented in response to the editorial "Choosing When and How to Die: Are We Ready to Perform Therapeutic Homicide," by K. Flegel and J. Fletcher, published in the 2012 issue of the journal.

A letter to the editor is presented in response to the article "Should a Reversible, But Lethal, Incident Not Be Treated When a Patient Has a Do-Not-Resuscitate Order?" in the 2014 issue of the periodical.

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. [ABSTRACT FROM AUTHOR]