Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

BACKGROUND: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. METHODS: In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. RESULTS: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). INTERPRETATION: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

Exploring key stakeholders' attitudes and opinions on medical assistance in dying and palliative care in Canada: a qualitative study protocol.

INTRODUCTION: Canadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies and recommended practices regarding the optimal relationship between MAiD and PC services are not well developed. Multiple models are possible, including autonomous delivery of these services and formal or informal coordination, collaboration or integration. However, it is not clear which of these approaches are most appropriate, feasible or acceptable in different Canadian health settings in the context of the COVID-19 pandemic and in the post-pandemic period. The aim of this qualitative study is to understand the attitudes and opinions of key stakeholders from the government, health system, patient groups and academia in Canada regarding the optimal relationship between MAiD and PC services. METHODS AND ANALYSIS: A qualitative, purposeful sampling approach will elicit stakeholder feedback of 25-30 participants using semistructured interviews. Stakeholders with expertise and engagement in MAiD or PC who hold leadership positions in their respective organisations across Canada will be invited to provide their perspectives on the relationship between MAiD and PC; capacity-building needs; policy development opportunities; and the impact of the COVID-19 pandemic on the relationship between MAiD and PC services. Transcripts will be analysed using content analysis. A framework for integrated health services will be used to assess the impact of integrating services on multiple levels. ETHICS AND DISSEMINATION: This study has received ethical approval from the University Health Network Research Ethics Board (No 19-5518; Toronto, Canada). All participants will be required to provide informed electronic consent before a qualitative interview is scheduled, and to provide verbal consent prior to the start of the qualitative interview. Findings from this study could inform healthcare policy, the delivery of MAiD and PC, and enhance the understanding of the multilevel factors relevant for the delivery of these services. Findings will be disseminated in conferences and peer-reviewed publications.

The impact of attachment security on death preparation in advanced cancer: The role of couple communication.

OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

Mindfulness-Based Cognitive Therapy Intervention for Young Adults with Cancer: A Pilot Mixed-Method Study.

Purpose: Group mindfulness-based interventions are emerging as a promising, nonstigmatizing, and cost-effective strategy that may improve the well-being of individuals living with cancer. This study is a pilot pre-post mixed-method study to examine the feasibility, acceptability, and effects of an 8-week Mindfulness-based Cognitive Therapy group for Young Adults with Cancer (YA-MBCT). Methods: We approached young adults with cancer, who enrolled in YA-MBCT groups, offered at a large cancer hospital in Toronto, Ontario, Canada. Feasibility and acceptability were assessed through attendance rate and a postintervention satisfaction scale. Psychosocial outcomes were evaluated with a pre-post questionnaire package, with validated self-report measures, assessing depression, anxiety, perceived stress, quality of life, mindfulness, and self-compassion. Qualitative interviews were completed among a subset of participants to gain additional feedback. Results: Participants were 70 young adults with cancer, recruited from five YA-MBCT groups. Sixty participants (85%) attended a minimum of six of eight sessions, and overall satisfaction rates were high. All psychosocial outcomes demonstrated statistically significant changes (p < 0.01), with medium to large effect sizes (Cohen's d > 0.5). Qualitative interviews (n = 14) demonstrated overall positive views about the intervention, and provided insight into unique age-specific benefits, including reducing fear of cancer recurrence, improving body image, and creating a sense of belonging. Conclusion: The YA-MBCT is feasible and acceptable among young adults with cancer, with the potential to improve psychosocial outcomes. Our preliminary results should be replicated with larger studies with an active control group.

A Qualitative Study of a Compassion, Presence, and Resilience Training for Oncology Interprofessional Teams.

The well-being of health care providers may be challenged by their work, with evidence that oncology health care providers are a high-risk group for burnout. The present qualitative pilot study evaluated a mindfulness-based group intervention, referred to as Compassion, Presence, and Resilience Training (CPR-T), for oncology interprofessional teams. The purpose of this study was to elucidate the subjective experience of oncology health care providers receiving CPR-T and their perceptions of its benefits, risks, or challenges. The CPR-T was delivered to providers from two oncology teams in a large cancer center in Canada. Ten of these providers participated in semistructured interviews 1 to 5 months after completing the CPR-T. The interview transcripts were coded using a thematic analysis strategy. Five benefits of the CPR-T were identified: learning to pause, acquiring a working definition of stress and self-care, becoming fully present, building self-compassion, and receiving organizational acknowledgment and recognition of stress. In addition, two participant-identified challenges were recognized: sharing vulnerability within interprofessional teams and committing to a sitting meditation practice. These findings demonstrate positive transformations as a result of the CPR-T, as well as important challenges, and have important implications for holistic health care practice in oncology. Further research is necessary to validate the findings of this explorative study.

Managing Cancer and Living Meaningfully (CALM): A Randomized Controlled Trial of a Psychological Intervention for Patients With Advanced Cancer.

Purpose Individuals with advanced cancer experience substantial distress in response to disease burden and impending mortality. Managing Cancer And Living Meaningfully (CALM) is a novel, brief, manualized psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. We conducted a randomized controlled trial to compare CALM with usual care (UC) in this population. Methods Patients with advanced cancer were recruited from outpatient oncology clinics at a comprehensive cancer center into an unblinded randomized controlled trial. Permuted block randomization stratified by Patient Health Questionnaire-9 depression score allocated participants to CALM plus UC or to UC alone. Assessments of depressive symptoms (primary outcome), death-related distress, and other secondary outcomes were conducted at baseline, 3 months (primary end point), and 6 months (trial end point). Analyses were by intention to treat. Analysis of covariance was used to test for outcome differences between groups at follow-up, controlling for baseline. Mixed-model results are reported. Results Participants (n = 305) were recruited between February 3, 2012, and March 4, 2016, and randomly assigned to CALM (n = 151) or UC (n = 154). CALM participants reported less-severe depressive symptoms than UC participants at 3 months (Δ = 1.09; P = .04; Cohen's d = 0.23; 95% CI, 0.04 to 2.13) and at 6 months (Δ = 1.29; P = .02; d = 0.29; 95% CI, 0.24 to 2.35). Significant findings for greater end-of-life preparation at 6 months also favored CALM versus UC. No adverse effects were identified. Conclusion Findings suggest that CALM is an effective intervention that provides a systematic approach to alleviating depressive symptoms in patients with advanced cancer and addresses the predictable challenges these patients face.

Caregiver quality of life in advanced cancer: Qualitative results from a trial of early palliative care.

BACKGROUND: Early involvement of palliative care improves patient quality of life; however, quantitative studies have not yet demonstrated a similar effect for caregivers, for whom the construct of quality of life is less well developed. AIM: To conceptualise quality of life of caregivers from their own perspective and to explore differences in themes between those who did or did not receive an early palliative care intervention. DESIGN: Qualitative grounded theory study. SETTING: Tertiary comprehensive cancer centre. PARTICIPANTS: Following participation in a cluster-randomised trial of early palliative care, 23 caregivers (14 intervention and 9 control) of patients with advanced cancer participated in semi-structured interviews to discuss their quality of life. RESULTS: The core category was 'living in the patient's world'. Five related themes were 'burden of illness and caregiving', 'assuming the caregiver role', 'renegotiating relationships', 'confronting mortality' and 'maintaining resilience'. There was thematic consistency between trial arms, except for the last two themes, which had distinct differences. Participants in the intervention group engaged in open discussion about the end of life, balanced hope with realism and had increased confidence from a range of professional supports. Controls tended to engage in 'deliberate ignorance' about the future, felt uncertain about how they would cope and lacked knowledge of available supports. CONCLUSIONS: Caregiver quality of life is influenced profoundly by the interaction with the patient and should be measured with specific questionnaires that include content related to confronting mortality and professional supports. This would improve delineation of quality of life for caregivers and allow greater sensitivity to change. Registration: clinicaltrials.gov NCT01248624.

Lost and stranded: the experience of younger adults with advanced cancer.

PURPOSE: There has been increased awareness recently of the unique medical and psychosocial needs of adolescents and young adults (AYAs) with cancer. However, the existing AYA literature is mainly focused on curative disease or survivorship rather than on advanced disease. Using qualitative methodology, we sought to understand the experience of younger adults with advanced cancer. METHODS: Participants were interviewed using open-ended, discovery-oriented interviews. Data was analyzed using thematic analysis. In total, ten English-speaking advanced cancer patients who were being treated at a comprehensive cancer center in Canada, were interviewed. Participants were between the ages of 18 and 35, and seven of them were female. RESULTS: The diagnosis of cancer was universally experienced as isolating and unexpected, with serious illness regarded as a problem of older individuals. The core challenge of living in the face of dying was felt to be constantly present yet typically unarticulated. Meaning-making tended to be constructed around future-oriented goals rather than upon the life that had been lived. Individuals felt forcefully removed from the stream of life, with a perceived interruption in the developmental tasks of establishing adult identity, becoming autonomous, and forming new relationships. All cited a need for young adult-specific services, yet none could describe specific services that would be beneficial. Many expressed reluctance to engage in individual psychotherapeutic treatment. CONCLUSIONS: Advanced cancer in younger adults was perceived by them as isolating and as interfering with age-appropriate developmental tasks. Creative and flexible psychosocial support programs are needed to engage this population with limited expected survival.

Goals set in the land of the living/dying: a longitudinal study of patients living with advanced cancer.

A longitudinal qualitative research study was undertaken to provide an understanding of a prolonged experience of advanced cancer, as seen through the eyes of dying individuals. Using a variant of the grounded theory method, the authors theoretically sampled, from outpatient clinics in a large comprehensive cancer treatment center, 27 patients with either advanced lung or gastrointestinal cancer who had an expected survival of up to 2 years. The authors conducted a total of 54 interviews with these patients to learn of their experience of advanced cancer. The authors represent their experience with the core category: striving to grow in the land of the living/dying, symbolizing their sense of finding themselves in a borderland between life and death where their efforts focused on 3 common goals. controlling dying, valuing life in the present, and creating a living legacy. They provide a longitudinal account of how these goals were addressed throughout the illness trajectory and discuss the theoretical and clinical implications of this understanding for the experience of dying from advanced cancer.

Transforming the experience of cancer care: a qualitative study of a hospital-based volunteer psychosocial support service.

PURPOSE: As volunteer support services for cancer patients evolve and seek to gain credibility and acceptance, it is important that these services be carefully evaluated. This paper describes findings from a research study conducted by the Healing Beyond the Body (HBB) program, a hospital-based volunteer psychosocial support service in a comprehensive cancer center in Toronto, Canada. The goal of this study was to gain insight into the experience of patients who have interacted with HBB volunteers and to evaluate the benefits and risks of this program for these patients. MATERIALS AND METHODS: A qualitative research method, based on semi-structured interviews with 15 patients recruited in the Chemotherapy Daycare Unit, was used. The interviews were transcribed and thematically analyzed. RESULTS: Findings suggest that volunteers can effectively serve an enhanced supportive role in a hospital setting without adverse effects, and that their services are positively received by patients. The following themes were identified in relation to perceived benefits of the HBB volunteer support service: (1) a sense of humanization and normalization; (2) a sense of security; (3) support for non-medical needs; and (4) support for unaccompanied patients. While no negative experiences with the HBB volunteers were reported, the following themes were identified in relation to potential weaknesses of the HBB volunteer service: (1) a limited awareness by patients of the HBB volunteers' roles and responsibilities; and (2) the lack of a structured role definition for the HBB volunteers at the pre-treatment phase. CONCLUSION: Our findings add to the literature on the contribution of volunteer support services and may serve decision-makers concerned with best practices in utilizing volunteer resources within a cancer hospital structure.