Are We Consulting, Sharing Care, or Taking Over? A Conceptual Framework.

Background: Primary- and specialist-level palliative care services are needed. They should work collaboratively and synergistically. Although several service models have been described, these remain open to different interpretations and deployment. Aim: This article describes a conceptual framework, the Consultation-Shared Care-Takeover (C-S-T) Framework, its evolution and its applications. Design: An iterative process informed the development of the Framework. This included a symposium, literature searches, results from three studies, and real-life applications. Results: The C-S-T Framework represents a spectrum anchored by the Consultation model at one end, the Takeover model at the other end, and the Shared Care model in the center. Indicators, divided into five domains, help differentiate one model from the other. The domains are (1) Scope (What aspects of care are addressed by the palliative care clinician?); (2) Prescriber (Who prescribes the treatments?); (3) Communication (What communication occurs between the palliative care clinician and the patient's attending clinician?); (4) Follow-up (Who provides the follow-up visits and what is their frequency?); and (5) Most responsible practitioner (MRP) (Who is identified as MRP?). Each model demonstrates strengths, limitations, uses, and roles. Conclusions: The C-S-T Framework can be used to better describe, understand, assess, and monitor models being used by specialist palliative care teams in their interactions with primary care providers and other specialist services. Large studies are needed to test the application of the Framework on a broader scale in health care systems.

Nurse practitioner and physician end-of-life home visits and end-of-life outcomes.

OBJECTIVES: Physicians and nurse practitioners (NPs) play critical roles in supporting palliative and end-of-life care in the community. We examined healthcare outcomes among patients who received home visits from physicians and NPs in the 90 days before death. METHODS: We conducted a retrospective cohort study using linked data of adult home care users in Ontario, Canada, who died between 1 January 2018 and 31 December 2019. Healthcare outcomes included medications for pain and symptom management, emergency department (ED) visits, hospitalisations and a community-based death. We compared the characteristics of and outcomes in decedents who received a home visit from an NP, physician and both to those who did not receive a home visit. RESULTS: Half (56.9%) of adult decedents in Ontario did not receive a home visit from a provider in the last 90 days of life; 34.5% received at least one visit from a physician, 3.8% from an NP and 4.9% from both. Compared with those without any visits, having at least one home visit reduced the odds of hospitalisation and ED visits, and increased the odds of receiving medications for pain and symptom management and achieving a community-based death. Observed effects were larger in patients who received at least one visit from both. CONCLUSIONS: Beyond home care, receiving home visits from primary care providers near the end of life may be associated with better outcomes that are aligned with patients' preferences-emphasising the importance of NPs and physicians' role in supporting people near the end of life.

Flourishing mental health despite disabling chronic pain: Findings from a nationally representative sample of Canadians with arthritis.

This study aims to determine the prevalence of, and factors associated with, the "absence of psychiatric disorders" (APD) and "complete mental health" (CMH) among individuals with arthritis who report disabling chronic pain. There are three aspects of CMH: a) APD; b) happiness and/or life satisfaction in the past month on a daily or almost daily basis, and c) high levels of psychological and social well-being. A secondary analysis of a nationally representative sample (n = 620) of individuals with arthritis who report chronic and debilitating pain was conducted. Data were drawn from the Canadian Community Health Survey-Mental Health. The results of this study indicate that many people with arthritis who are living with disabling chronic pain are free of psychiatric disorders (76%) and are in CMH (56%). Factors associated with higher odds of APD and CMH among the sample include having a confidant, being free from insomnia, and having no lifetime history of major depressive disorder and/or generalized anxiety disorder. White respondents were almost 3-fold more likely to be in a state of CMH compared to racialized individuals. Respondents in the top 50% of household incomes were almost 4-fold more likely to be APD compared to the lowest 10%. In conclusion, many individuals with arthritis have excellent mental health despite disabling pain. Clinicians should be attuned to the mental health of their patients, with particular focus on those who may be more vulnerable to adverse mental health outcomes, such as racialized individuals, those in impoverished households, and those who lack social support.

Outcome measures in palliative care training interventions: a systematic review of trial-based studies.

BACKGROUND: The ability of health care clinicians to offer a palliative approach to care to their patients with progressive, life-limiting illness has become critical as demand for these services increases. Numerous training initiatives exist to assist clinicians who are not palliative care specialists in the development of palliative care skills, however there is little consensus on how to best measure the effectiveness of these education programs. We conducted a systematic review of palliative care training intervention trials to examine the outcomes measures used. METHODS: We searched MEDLINE, CINAHL, PsycINFO, Embase, HealthSTAR, and five trial registries for studies and protocols published since 2000. Eligible studies were trials assessing palliative care training for clinicians. Interventions had to address at least two of six palliative care-related domains, based on the National Consensus Project: identification or assessment; illness understanding; symptom management; decision making (e.g., advance care planning); coping (patient and caregivers); and referral (coordination/care planning). Each article was reviewed independently by a minimum of two reviewers for inclusion and extraction of relevant data. RESULTS: Of 1,383 articles reviewed, 36 studies met the inclusion criteria, 16 (44%) of which focused on palliative care communication skills. Among all the trials, 190 different measures were reported. Only 11 validated measures were used in at least 2 studies, including the End-of-Life Professional Caregiver Survey (EPCS) for clinicians and the Quality of Dying and Death Questionnaire (QODD) for caregivers. Clinician and patient/caregiver reported outcomes were measured in 75% and 42% of studies, respectively. Half of the trials employed a study-created questionnaire. Data from administrative (n=14) and/or qualitative (n=7) sources were also used. Nine studies, almost exclusively those with a communication skills focus, assessed clinician interactions as an outcome. CONCLUSIONS: We found considerable diversity in outcomes among the trials reviewed. Further examination of the outcomes used in the broader literature and development of these measures is needed. This will assist towards establishing meaningful and consistent metrics for assessing the impact of palliative care education, to inform evidence-based scaling of effective programs.

Increasing palliative care capacity in primary care: study protocol of a cluster randomized controlled trial of the CAPACITI training program.

BACKGROUND: Primary care providers play a critical role in providing early palliative care to their patients. Despite the availability of clinical education on best practices in palliative care, primary care providers often lack practical guidance to help them operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to provide an early palliative approach to care. The entire program consists of 12 sessions (1 h each), divided evenly across three modules: (1) Identify and Assess; (2) Enhance Communication Skills; (3) Coordinate for Ongoing Care. We report the protocol for our planned evaluation of CAPACITI on its effectiveness in helping primary care providers increase their identification of patients requiring a palliative approach to care and to strengthen other core competencies. METHODS: A cluster randomized controlled trial evaluating two modes of CAPACITI program delivery: 1) self-directed learning, consisting of online access to program materials; and 2) facilitated learning, which also includes live webinars where the online materials are presented and discussed. The primary outcomes are 1) percent of patients identified as requiring palliative care (PC), 2) timing of first initiation of PC, and self-reported PC competency (EPCS tool). Secondary outcomes include self-reported confidence in PC, practice change, and team collaboration (AITCS-II tool), as well as qualitative interviews. Covariates that will be examined are readiness for change (ORCA tool), learning preference, and team size. Primary care teams representing interdisciplinary providers, including physicians, nurse practitioners, registered nurses, care coordinators, and allied health professionals will be recruited from across Canada. The completion of all three modules is expected to take participating teams a total of six months. DISCUSSION: CAPACITI is a national trial aimed at behavior change in primary care providers. This research will help inform future palliative care educational initiatives for generalist health care providers. Specifically, our findings will examine the effectiveness of the two models of education delivery and the participant experience associated with each modality. TRIAL REGISTRATION: ClinicalTrials.gov NCT05120154.

Effectiveness of Training Programs About a Palliative Care Approach: A Systematic Review of Intervention Trials for Health Care Professionals.

Background: Palliative care (PC) training initiatives have proliferated to assist generalist health care providers (HCPs) develop skills for applying an early PC approach. To date, there is little synthesis of high-level evidence to review the content and effectiveness of these programs. To address this gap in knowledge, we conducted a systematic review of trials of training inventions to build PC competency in HCPs, according to PRISMA guidelines (PROSPERO registration no. 271741). Materials and Methods: We searched MEDLINE, Embase, PsycINFO, CINAHL, HealthSTAR, Web of Science, and the Cochrane Database of Systematic Reviews and Clinical Trials for studies published since 2000. Eligible studies were trials assessing PC training for HCPs. Interventions had to address at least two of six PC-related components, adapted from the National Consensus Project: identification or assessment; illness understanding; symptom management; decision making; coping; and referral. Two reviewers independently assessed articles for inclusion, using Rayyan, and extracted relevant data. Risk of bias was assessed using the Cochrane ROB2 or ROBINS-I tools. Results: Of 1209 articles reviewed, 22 studies met the inclusion criteria, with the majority being conducted in the United States (n = 9) or Europe (n = 8). Nearly all studies (n = 19) collected data through self-reported surveys; administrative (n = 4), clinical outcomes (n = 4), or interaction analysis (n = 6) data were also or solely used. Interventions featured didactic, skill-based training followed by role-play and/or individual coaching. Communication around illness understanding was the most taught PC component. Few interventions involved comprehensive PC training, with 12 studies representing 3 or less of the 6 framework components. Most studies (n = 16) reported a significant positive impact on at least one outcome, most often HCP self-reported outcomes. Conclusions: While many of these interventions demonstrated improved confidence among HCPs in the PC components taught, findings were mixed on more objective outcome measures. Further trial-based evidence is required on comprehensive PC training to help inform these interventions.

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.

Achieving holistic, quality-of-life focused care: description of a Compassion Care Community initiative in Canada.

The compassionate community movement as both a public health approach and a social model of care for various life stages is gaining traction in Canada and elsewhere. One example is the Windsor-Essex Compassion Care Community (WECCC), an evidence-based model and set of tools to improve the quality of life, health and wellness of vulnerable and aging populations by identifying and addressing upstream and downstream social and other risks to physical and mental health. This paper presents findings from the WECCC pilot evaluation. The WECCC initiative provided one-on-one volunteer-supported quality of life assessment, resource navigation and goals support program (Catalyzing Community Connections). This was augmented with public education sessions on social connection and loneliness (Importance of Being Connected) for the broader population. The RE-AIM framework was used to frame evaluation of WECCC through the first 4 years. Questionnaires were used to evaluate participant outcomes related to implementation and effectiveness. Interviews and focus groups were completed to understand impacts. From 2017 to 2020, WECCC has engaged over 2,500 individuals, 65 organizations and 400 volunteers combined in both programs. Nearly all (82% to 95%) participants reported positive changes to health, quality of life and/or social connections. This developmental phase of a compassionate community initiative has allowed piloting of an evaluation framework focusing on reach, adoption, implementation and early signals of effectiveness and maintenance. This demonstration provides information on feasibility, acceptability and potential impacts of this type of over-arching community initiative.

The compassionate communities movement is a social and holistic approach to care that engages community members in caring for others. The movement is growing around the world. The philosophy is that all citizens benefit from participating in care for others who are aging, disabled, nearing end-of-life or struggling with determinants of health. The Windsor-Essex Compassion Care Community (WECCC) is a Canadian example of this model. WECCC seeks to improve the health of people at any stage of life by helping them to identify their life needs and goals and providing them support to meet them. The program has two core components: one-on-one volunteer-support for person-directed goals and navigation (Catalyzing Community Connections) and public education sessions about loneliness and social connection (Importance of Being Connected). Evaluation is a routine part of program delivery with questionnaires, interviews and focus groups used to understand the program's outcomes. From 2017 to 2020, WECCC has worked with over 2,500 individuals, 65 organizations and 400 volunteers. Satisfaction with the program is very high (95%). Nearly all participants reported positive changes to their quality of life (82%) and social connections (95%). Although pilot results are favorable, continued evaluation and stronger research designs are needed to comprehensively evaluate the WECCC program over time and to support growth and spread of the model.

Palliative care physicians' motivations for models of practicing in the community: A qualitative descriptive study.

BACKGROUND: Internationally, both primary care providers and palliative care specialists are required to address palliative care needs of our communities. Clarity on the roles of primary and specialist-level palliative care providers is needed in order to improve access to care. This study examines how community-based palliative care physicians apply their roles as palliative care specialists, what motivates them, and the impact that has on how they practice. DESIGN: A qualitative descriptive study using semi-structured virtual interviews of community-based palliative care specialists. We asked participants to describe their care processes and the factors that influence how they work. SETTING/PARTICIPANTS: A qualitative descriptive study using semi-structured virtual interviews of community-based palliative care physicians in Ontario, Canada was undertaken between March and June 2020. At interview end, participants indicated whether their practice approaches aligned with one or more models depicted in a conceptual framework that includes consultation (specialist provides recommendations to the family physician) and takeover (palliative care physician takes over all care responsibility from the family physician) models. RESULTS: Of the 14 participants, 4 worked in a consultation model, 8 in a takeover model, and 2 were transitioning to a consultation model. Different motivators were found for the two practice models. In the takeover model, palliative care physicians were primarily motivated by their relationships with patients. In the consultation model, palliative care physicians were primarily motivated by their relationships with primary care. These differing motivations corresponded to differences in the day-to-day processes and outcomes of care. CONCLUSIONS: The physician's personal or internal motivators were drivers in their practice style of takeover versus consultative palliative care models. Awareness of these motivations can aid our understanding of current models of care and help inform strategies to enhance consultative palliative care models.

COVID-19 Personal Protective Equipment in the Home: Navigating the Complexity of Donning and Doffing.

PURPOSE: The safety of care professionals and patients is paramount while caring for people with infectious diseases, including those with confirmed or suspected severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection and coronavirus disease 2019 (COVID-19). Existing policies and protocols for donning and doffing personal protective equipment (PPE) are primarily for institutional settings such as hospitals, not for home visits for patient care. We describe a protocol for donning and doffing PPE in home settings. METHODS: We used an iterative, rapid-prototyping approach to develop the protocol. A small workgroup created preliminary drafts, drawing on hospital-based protocols and modifying them, while undertaking simulations. Wider input was solicited via 2 webinars; 1 regional (Hamilton, Ontario) with palliative clinicians, and 1 national (Canada) with varying professions. We also consulted a group of infectious disease experts. A "how-to" video accompanies the protocol. RESULTS: Twelve versions of the protocol were produced, with major changes occurring within the first 6 versions. A national webinar mid-development provided further validation and minor modifications. Subsequent versions involved minor changes. The protocol has 4 phases: (1) Preparing, (2) Entering the Home, (3) Leaving the Home, and (4) After the Visit and Reprocessing. In addition to PPE-related equipment, the protocol requires additional materials including 2 pails for transporting supplies, plastic bags, hand sanitizer, disinfectant wipes, and printed easy-to-use checklists. CONCLUSIONS: This protocol addresses gaps in COVID-19-related guidelines, specifically the process of donning and doffing PPE during home visits while supplementing jurisdictional PPE guidelines and protocols.Appeared as Annals "Online First" article.

Transitions in Labour Force Participation over the Palliative Care Trajectory.

BACKGROUND: Home-based palliative programs rely on family caregivers, who often miss time from employment. This article identified changes in caregivers' labour force participation over the palliative trajectory. METHODS: Family caregivers (n = 262) were interviewed biweekly to measure transitions across four employment categories. RESULTS: More than half of the caregivers had one employment transition and 29% had three or more. The highest proportion of transitions occurred for caregivers who were employed part-time. INTERPRETATION: Understanding these transitions is critical to the development of strategies tailored to caregivers to contain labour force losses and to support caregivers during a time of high caregiving demands.

The reliability characteristics of the REFLECT rubric for assessing reflective capacity through expressive writing assignments: A replication study.

INTRODUCTION: The medical education community has implemented writing exercises that foster critical analysis and nurture reflective capacity. The REFLECT rubric (Wald et al. 2012) was developed to address the challenge of assessing these written reflections. The objective of this replication work is to explore the reproducibility of the reliability characteristics presented by the REFLECT developers. METHODS: Five raters evaluated narratives written by medical students and experienced clinicians using the REFLECT rubric. Reliability across rubric domains was determined via intraclass correlation coefficient and internal consistency was determined via Cronbach's alpha. RESULTS: Intraclass coefficients demonstrated poor reliability for ratings across all tool criteria (0.350-0.452) including overall ratings of narratives (0.448). Moreover, the internal consistency between scale items was also poor across all criteria (0.529-0.621). DISCUSSION: We did not replicate the reliability characteristics presented in the original REFLECT article. We consider these findings with respect to the contextual differences that existed between our study and the Wald and colleagues study, pointing particularly at the possible influence that repetitive testing and refinement of the tool may have had on their reviewers' shared understanding of its use. We conclude with a discussion about the challenges inherent to reductionist approaches to assessing reflection.

Unpacking 'the cloud': a framework for implementing public health approaches to palliative care.

Designing and implementing population-based systems of care that address the social determinants of health, take action on multiple levels, and are guided by evidence-based principles is a pressing priority, and an international challenge. Aging persons are a priority demographic whose health needs span physical, psychosocial and existential care domains, increase in the last year of life, are often poorly coordinated and therefore remain unmet. Compassionate communities (CCs) are an example of a public health approach that fully addresses the holistic healthcare needs of those who are aging and nearing end of life. The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM's concepts can be adapted to address a community's healthcare context, needs, and goals for change. We share examples of how the model's major concepts have been applied in the development, evaluation and spread of a complex CC approach.

On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia.

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient's end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.

How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life.

BACKGROUND: To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets ('generalist palliative care'). Specialists should have skills for managing complex and difficult cases ('specialist palliative care') and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. AIM: To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. DESIGN: This is a population-based retrospective cohort study using linked health care administrative data. SETTING/PARTICIPANTS: Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). RESULTS: We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. CONCLUSION: We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.