For over 10 years my colleagues and I have conducted research on how to support people and communities through illness, dying, grief, and burnout. Here are several peer-reviewed academic articles I’ve had the privilege of publishing.
Follow along with my current contemplative writing on my Substack.
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Purpose
Communities in Canada have created targeted hospice palliative care strategies such as facility-based hospices for the homeless (H4H) to promote equitable access to care. To ensure the sustainability of H4H programs, there is a need to prevent and mitigate burnout and enhance workplace wellbeing. The objectives for this study were to, (1) develop a better understanding of H4H staff and volunteers’ experiences of stress and wellbeing; and (2) explore opportunities for additional resources to support workplace wellbeing.
Methods
We developed and administered an anonymous 26-item survey to 104 providers including both staff (eg, nurses, administrators) and volunteers at a facility-based H4H in Ontario. The survey gathered open and closed-ended data on sociodemographic information, compassion satisfaction, and H4H stories of workplace experiences.
Findings
The response rate was 56% (n = 58). Most respondents had high compassion satisfaction. However, multiple factors causing stress at work across the socio-ecological model were discussed. Requests for additional resources to foster workplace wellbeing included educational, process-related, spiritual/psychological, and social supports. Respondents storied that positive workplace wellbeing includes being able to provide quality care, and having supportive relationships, personal fulfillment, and a respectful culture within the workplace.
Conclusion
Provider participants were satisfied with their ability to be effective carers, yet chronic multi-level work-related stressors can erode a sense of meaning in H4H work. A multi-faceted evidence-based approach to supporting workplace wellbeing is needed in H4H settings. Research has shown that mindfulness could be an effective strategy, as it can decrease burnout and promote coping, team connection, and anti-oppressive care.
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Background: There is promising evidence that psychedelic-assisted psychotherapy may be a powerful new treatment approach for mortality-related distress. However, less is known about the possible benefits for people experiencing grief. Aim: To explore what is known about using psychedelics to attend to grief following death due to advanced illness. Design: This scoping review followed Arskey and O'Malley's methodological framework and adheres to the PRISMA-ScR reporting guidelines. Searches were conducted in seven databases in April 2023, and updated in December 2023. No limits or filters were applied. The quality of the papers was not appraised. Results: Of the 4614 records screened, 18 reports were included. Seven are empirical investigations of the impact of psychedelics on grief. This literature is informed by different epistemologies, ontologies, and conceptualizations of grief, adding a layer of complexity and potential for conflict to arise due to differing perspectives. Overall, there is little high-quality evidence about the use of psychedelics to attend to grief. However, across the empirical studies, positive outcomes were generally reported (i.e., reduction in grief symptom severity), with few studies reporting adverse events or negative outcomes. Conclusion: There is not a strong evidence base to guide clinical recommendations for applying psychedelics to the problem of grief at this time. Moving forward, psychedelic authors and researchers can explicitly situate their work (e.g., position, interests) to assist with interpretability of findings, and integrate theory from the field of grief studies, which may require collaborations with grief therapists and theorists to guide future work.
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Context: Interprofessional collaboration is recommended in caring for frail older adults in primary care, yet little is known about how interprofessional teams approach end-of-life (EOL) conversations with these patients.
Objective: To understand the factors shaping nurses’ and allied health clinicians’ involvement, or lack of involvement in EOL conversations in the primary care of frail older adults.
Methods/setting: critical ethnography of a large interprofessional urban Family Health Team in Ontario, Canada. Data production included observations of clinicians in their day-to-day activities excluding direct patient care; one-to-one semi-structured interviews with clinicians; and document review. Analysis involved coding data using an interprofessional collaboration framework as well as an analysis of the normative logics influencing practice.
Participants: Interprofessional clinicians (n = 20) who cared for mildly to severely frail patients (Clinical Frailty Scale) at the Family Health Team.
Results: Findings suggest primary care nurses and allied health clinicians have the knowledge, skills, and inclination to engage frail older adults in EOL conversations. However, the culture of the clinic prioritizes biomedical care, and normalizes nurses and allied health clinicians providing episodic task-based care, which limits the possibility for these clinicians’ engagement in EOL conversations. The barriers to nurses’ and allied health clinicians’ involvement in EOL conversations are rooted in neoliberal-biomedical ideologies that shapes the way primary care is governed and practiced.
Conclusions: Our findings help to explain why taking an individual-level approach to addressing the challenge of delayed or avoided EOL conversations, is unlikely to result in practice change. Instead, primary care teams can work to critique and redevelop quality indicators and funding models in ways that promote meaningful interprofessional practice that recognize the expertise of nursing and allied health clinicians in providing high quality primary care to frail older patients, including EOL conversations.
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We developed, implemented, and evaluated a participatory arts-based storytelling initiative called the Reflection Room project. Our aim was to investigate if visiting a Reflection Room, (1) creates opportunities for disclosing emotions and processing thoughts, (2) increases comfort discussing dying and death, and (3) supports advance care planning (ACP), conversations. In the pilot phase of the Reflection Room project, a Reflection Room was installed in 25 sites across Canada from 2016–2017. Data collection included reflection cards (n = 463), and surveys completed by visitors upon exiting a room (n = 271) and 3 months later (n = 50). Analysis involved theoretically driven coding, inductive content analysis, and descriptive statistics. We found reflections contained both emotional disclosures and reflective processing. Survey data indicated visiting a Reflection Room increased comfort in thinking and talking about dying and death as well as the likelihood of engaging in ACP. In the future, we will explore the extent to which the project fosters social connections and well-being.
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Objective: To explore what is known about end-of-life (EOL) conversations with frail older adults across all settings including primary care in Canada, and to understand the barriers to, and recommendations for, EOL conversations.
Data sources: Comprehensive searches were conducted in CINAHL (EBSCO), Embase (Ovid), MEDLINE (Ovid), AgeLine (EBSCO), Sociological Abstracts (ProQuest), and Applied Social Sciences Index and Abstracts (ProQuest). Searches used text words and subject headings (eg, MeSH, Emtree) related to 3 concepts: frailty, Canada, and EOL conversations.
Study selection: Twenty-one English-language articles were selected (ie, 4 reviews, 10 commentaries, 3 quantitative studies, 3 qualitative studies, 1 mixed-methods study) that included information about EOL conversations with frail older adults in the Canadian health care context.
Synthesis: In terms of having EOL conversations with frail older adults, this study found that many clinicians do not often and adequately discuss frailty and impending death with their older patients. Moreover, patients and their care partners do not have enough knowledge about frailty and death to make informed EOL decisions, leading to patients choosing more aggressive therapies instead of care focused on symptom management. In terms of barriers to EOL discussions, common barriers included a lack of trust between clinician and patient, inadequate EOL training for clinicians, and ineffective clinician communication with patients and families. Recommendations for improving EOL conversations include regular screening for frailty to prompt conversations about care and the use of an interprofessional approach.
Conclusion: More empirical research is needed that uses exploratory methods to shed light on the contextual factors that may act as a barrier to EOL conversations. More research is also needed on the roles and responsibilities of interprofessional teams in screening for frailty and engaging in EOL conversations. Moreover, there is a need to better understand how frail older patients and their families want EOL conversations to unfold and what best facilitates these conversations.
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A look into the realities for supporting someone to die at home in Ontario
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The objective of this study was to assess the effectiveness of an 8-week mindfulness-based cognitive therapy (MBCT) group intervention to reduce psychological distress as well as to strengthen self-esteem, resilience, and general well-being for individuals living with a chronic illness and/or other health challenges. This pilot study employed a pre–posttest design to evaluate the outcome of the intervention for individuals receiving care in a Community and Family Medicine department and a Women’s Health Centre located in an urban downtown hospital. A total of 42 patients were enrolled in the study and 35 participants completed the intervention. Thirty-five of 42 enrolled participants completed the intervention. Twenty-eight participants completed the pretest and posttest assessments, which demonstrated statistically significant improvement on most outcome measures, including the Center for Epidemiological Studies–Depression Rating Scale (CES-D), Depression Anxiety Stress Scale (DASS), Affect Balance Scale (ABS), the Resilience Scale (RS), and the Five-Item World Health Organization Well-Being Index (WHO-5). Large effect sizes were observed for the CES-D, the ABS, and the DASS Stress subscale. Observed improvements were sustained at 4 weeks posttreatment. Results are consistent with studies indicating that MBCT offers promise in alleviating psychological distress for those who are seeking care in primary health care settings. Continued focus on how to best implement MBCT in primary health care, particularly for those with comorbid physical and mental health conditions, supports the World Health Organization’s recommendation to integrate evidence-based mental health care within primary health care to promote equitable access to care for those most in need.