Building Palliative Care Capacity for Generalist Providers in the Community: Results From the Capaciti Pilot Education Program.

Objective: Primary care providers play an important role in providing early palliative care, however they often lack practical supports to operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to help primary care providers offer an early palliative approach to care. The CAPACITI pilot program consisted of 10 facilitated, monthly training sessions, covering identification and assessment, communication, and engaging caregivers and specialists. We present the findings of an evaluation of the pilot program. Method: We conducted a single cohort study of primary care providers who participated in CAPACITI. Study outcomes were the change in the percentage of caseload reported as requiring palliative care and improved confidence in competencies measured on a 20-item, study-created survey. Pre and post survey data were analyzed using paired t-tests. Results: Twenty-two teams representing 127 care providers (including 36 physicians and 28 Nurse Practitioners) completed CAPACITI. Paired comparisons showed a moderate improvement in confidence across the competencies covered (.6 to 1.3 mean improvement across items using seven-point scales, all P < .05). Pre-CAPACITI, clinician prescribers (N = 32) identified a mean of 1.2% of their caseload requiring a palliative approach to care, which increased to 1.6% post-program (P = .02). Said differently, the total group of paired clinician prescribers identified 338 patients as requiring palliative care in their caseloads at baseline vs 482 patients following the intervention, for an overall increase of 144 patients in their collective caseloads. Conclusion: CAPACITI improved self-assessed palliative care identification and provider confidence in core competencies. The program demonstrated potential for building palliative care capacity in primary care teams.

Effect of "Speak Up" educational tools to engage patients in advance care planning in outpatient healthcare settings: A prospective before-after study.

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.

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

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.

Staffing a Specialist Palliative Care Service, a Team-Based Approach: Expert Consensus White Paper.

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).

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

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.

Implementation of the victoria bowel performance scale.

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.

Factors influencing family caregivers' ability to cope with providing end-of-life cancer care at home.

Dying at home is a goal promoted by many healthcare providers and governments as a way to enhance the dying experience for cancer patients and their family members. A key element to realizing this goal is the availability of a family member who is willing to provide care at home. Little research has been conducted on the factors that influence family caregivers' ability to cope with providing end-of-life cancer care at home. The purpose of this qualitative study was to describe factors influencing family caregivers' ability to cope with providing such care. An interpretive descriptive research design guided this study. Semistructured interviews with 29 active family caregivers were conducted and thematically analyzed. Our findings suggest 5 factors that influenced the caregivers' ability to cope: (1) the caregiver's approach to life, (2) the patient's illness experience, (3) the patient's recognition of the caregivers' contribution to his or her care, (4) the quality of the relationship between the caregiver and the dying person, and (5) the caregiver's sense of security. Findings provide important information to assist in informing health services and policies directed at enhancing family caregivers' coping abilities.

Telenursing in hospice palliative care.

During the last months of life, many people with advanced illness will be living in their homes. Coping with changing symptoms, and ultimately preparing for death, becomes part of daily life. Whether the ill person is at home for days or for months, they depend on family or friends to be primary caregivers, supported by home-based services. However, after physician and home health offices close, many patients and their caregivers are left to cope alone. The authors describe an innovative partnership between B.C. NurseLine (a provincial tele-triage and health information call centre), the British Columbia Ministry of Health and Fraser Health Hospice Palliative Care program that created after-hours access to care for dying patients and their families in one of Canada's largest health authorities. The article outlines how information and communications technology enabled merging the capacity and expertise of B.C. NurseLine with the expertise of specialized community-based palliative care services to achieve outcomes of improved symptom management, decreased visits to emergency rooms and enhanced support for families who are caring for loved ones at home. For nurses caring for home-based patients, there are lessons to be learned about how to maximize technology to create systems that both improve access to care and are sustainable in the future.