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Background: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). Methods: Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. Results: Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9–10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3–10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. Conclusion: The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research. [ABSTRACT FROM AUTHOR]

Background: Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses' perspectives. Methods: A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results: Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions: Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices. [ABSTRACT FROM AUTHOR]

Background: Indigenous palliative persons and their families often have different values, spiritual traditions, and practices from Western culture and Canadian health systems. Additionally, many healthcare policies and practices have been established without adequate consultation of the Indigenous populations they are meant to serve. This can result in barriers to Innu receiving culturally safe end-of-life care. Innu community leaders from Sheshatshiu, Labrador, have identified a need for further research in this area. The purpose of this study is to: (1) describe the cultural and spiritual practices related to death and dying of the Innu in Sheshatshiu; (2) identify aspects of current end-of-life care delivery that serve and/or fail to meet the cultural and spiritual needs of the Innu in Sheshatshiu; and (3) explore ways to integrate current end-of-life care delivery practices with Innu cultural and spiritual practices to achieve culturally safer care delivery for the Innu. Methods: This qualitative patient-oriented research study was co-led by Innu investigators and an Innu advisory committee to conduct semi-structured interviews of 5 healthcare providers and 6 decision-makers serving the community of Sheshatshiu and a focus group of 5 Innu Elders in Sheshatshiu. Data was analyzed thematically from verbatim transcripts. The codebook, preliminary themes, and final themes were all reviewed by Innu community members, and any further input from them was then incorporated. Quotations in this article are attributed to Innu Elders by name at the Elders' request. Results: The findings are described using eight themes, which describe the following: relationships and visitation support a "peaceful death"; traditional locations of death and dying; the important role of friends and community in providing care; flexibility and communication regarding cultural practices; adequate and appropriate supports and services; culturally-informed policies and leadership; and Innu care providers and patient navigators. Conclusions: The Innu in Sheshatshiu have a rich culture that contributes to the health, care, and overall well-being of Innu people approaching end of life. Western medicine is often beneficial in the care that it provides; however, it becomes culturally unsafe when it fails to take Innu cultural and spiritual knowledge and traditions into account. [ABSTRACT FROM AUTHOR]

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada. [ABSTRACT FROM AUTHOR]

Background: We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. Methods: This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. Results: Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. Conclusions: The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations – outside of navigation programs – to work towards more person-centred care. [ABSTRACT FROM AUTHOR]

Background: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. Methods: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. Results: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. Conclusions: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death. [ABSTRACT FROM AUTHOR]

Background: Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there remains a lack of staff engagement in the ACP process. Objectives: The aim of this study was to explore the perceptions and experiences of interdisciplinary staff related to the practice of ACP in LTCHs. Methods: This study is part of a larger Canadian project, iCAN ACP, that aims to increase uptake, and access to ACP for older Canadians living with frailty. An exploratory qualitative design using an interpretive descriptive approach was employed utilizing focus groups and semi-structured interviews with staff from four LTCHs in Ontario, Canada. Findings: There were 98 participants, including nurses (n = 36), physicians (n = 4), personal support workers (n = 34), support staff (n = 23), and a public guardian (n = 1). Three common themes and nine subthemes were derived: a) ongoing nature of ACP; b) complexities around ACP conversations; and c) aspirations for ACP becoming a standard of care in LTCHs. Discussion: The findings of this study provide important contributions to our understanding of the complexities surrounding ACP implementation as a standard of practice in LTCHs. One of the critical findings relates to a lack of ACP conversations prior to admission in the LTCHs, by which time many residents may have already lost cognitive abilities to engage in these discussions. The hierarchical nature of LTCH staffing also serves as a barrier to the interdisciplinary collaboration required for a successful implementation of ACP initiatives. Participants within our study expressed support for ACP communication and the need for open lines of formal and informal interdisciplinary communication. There is a need for revitalizing care in LTCHs through interdisciplinary care practices, clarification of role descriptions, optimized staffing, capacity building of each category of staff and commitment from the LTCH leadership for such care. Conclusion: The findings build on a growing body of research illustrating the need to improve staff engagement in ACP communication in LTCHs. [ABSTRACT FROM AUTHOR]