Background Since its inception over half a century ago, a defining attribute of palliative care philosophy has been an insistence that this approach intends to neither hasten death nor prolong life. A commitment to facilitate a ‘natural’ end-of-life trajectory is ubiquitous in palliative care discourse. However, as an increasing number of jurisdictions around the world legislate to allow assisted death, palliative care providers are having to re-evaluate the relevance of this commitment for the relational ethics of their practice. Research Aims and Participants In this paper, we explore how a sample of Canadian specialist palliative care nurses reflected on this longstanding disciplinary ethic of never intending to hasten death amidst evolving professional and ethical responsibilities to support people who explore and choose medical assistance in dying (MAiD). Research Design A qualitative analysis of semi-structured interviews with Canadian speciality palliative care nurses, conducted shortly after Canada legalized MAiD. We present an interpretive description through a framework of moral reflection; moral reflection consists of moral intuition, relational ethics, and moral coherence. Ethical Considerations Approval was granted from the Research Ethics Board of the University of Ottawa. Informed consent was obtained in writing and confirmed verbally at the time of each interview. We removed identifiers such as participant roles and geographic locations from interview quotes to protect confidentiality. Findings Across the different components of moral reflection, palliative care nurses negotiated their ethical positions amidst changes to end-of-life care. Conclusions Moral reflection and striving for moral coherence are ongoing processes; the goal is an engagement with moral plurality. As new jurisdictions consider and legalize MAiD, revisiting the early moral reflections of palliative care nurses can help nurses currently wrestling with similar ethical questions.

En santé, les alertes éthiques visent à signaler des risques possibles ou des situations avérées minant la sécurité ou les droits des patients et du personnel, permettant ainsi aux établissements de prévenir ou corriger des situations contraires à leur mandat. Pour les lanceurs d’alerte toutefois, elles prennent un sens plus profond. En nous basant sur des récits de divulgateurs infirmiers recueillis dans le cadre d’une étude qualitative, nous suggérons que les alertes éthiques reflètent les techniques de soi décrites par Michel Foucault : en mobilisant soi-même et les autres dans leurs démarches, les lanceurs d’alerte s’imposent des conduites motivées par un souci de vérité et d’authenticité. Leur expérience provoque des états successifs de validation et de dissonance, culminant dans des sentiments profonds de cohérence ou de fracture identitaire. Ces aboutissements ont des effets durables sur leur sentiment de soi et leur relation avec les autres et leur profession, (re)définissant leurs sentiments de loyauté et leur disposition à lancer l’alerte dans le futur.

Background: In their lifetime, every person will experience the loss of someone they care about. In Canada, the COVID-19 pandemic, the ongoing opioid crisis, and the discovery of unmarked graves at residential schools have brought this into particular focus. Research and theory in the area of grief have evolved over the years. Grief literacy challenges us to better understand and support grief in all aspects of our society. The Public Health Model of Bereavement Support was theorized and tested in Australia. The supports people seek are explored and the model identifies low, medium, and high categories of risk of prolonged grief disorder. Objective: The purpose of this study is to advance public health understanding of grief and its support. The specific research objectives are to (1) test the Public Health Model of Bereavement Support in the Canadian context and (2) build a grounded theory of grief support. Design: This project uses a sequential mixed methods design. Methods: A Canada-wide survey in English and French will produce data that will be used to empirically test the Public Health Model of Bereavement Support. In the second phase, the grounded theory of grief support centers on voices that have not been widely heard in grief research. The mixed methods then fully elucidate grief and grief support in Canada. Results: This is the first study internationally to test this model in a (post)pandemic context, in a jurisdiction that legally permits medical assistance in dying, and in a context with an opioid crisis. Conclusion: The findings will allow us to better understand grief and the current realities of grieving, which has the potential to enhance the wellbeing of the millions of Canadians who are grieving.

BackgroundFollowing an earlier mixed-method survey in which we asked stakeholders to report on their perceptions of the progress made in relation to Canada's Framework on Palliative Care and Action Plan, the purpose of this study was to conduct an in-depth qualitative exploration of the factors influencing that progress, or lack thereof.MethodsThis was a qualitative interview study conducted in Canada. Inclusion criteria included experience with palliative care in Canada in a professional or volunteer capacity. Interviews were conducted by telephone using an interview guide that asked specific questions in relation to the Framework on palliative care priorities (e.g., education, caregiver support, and equitable access). Data was analyzed using qualitative descriptive methods.ResultsThirty-five diverse stakeholders with extensive experience in palliative care were interviewed. In relation to palliative education, participants indicated that although there were excellent palliative care resources available across the country there was further need for embedding palliative care in undergraduate education and for mentored opportunities to engage in care across diverse contexts. The identification, development, and strategic positioning of champions was an important strategy for improving palliative care knowledge and capacity. The development of standard competencies was viewed as an important step forward; although, there was a need to include more members of the care-team and to create pathways for life-long learning. In relation to support for family caregivers, even as participants cited numerous community-based resources offered by not-for-profit organizations, they described significant barriers including a shortage of in-home support, lack of understanding of what caregivers do, and policy-based contractual and privacy issues. In relation to palliative care access, participants described a nurse-centered, consult-based, multi-site and multi-provider model of care that was facilitated by technology. Barriers to this model were systemic healthcare issues of siloed, fragmented, and for-profit care.ConclusionParticipants in this study had clear insights into the factors that would support or impede progress to the development of palliative care in Canada. Some of those factors were achievable within current health and educational systems. Other factors were going to require longer term and more comprehensive solutions.

Cette étude visait à analyser les dénonciations soumises par des membres du personnel infirmier via une plateforme développée par un syndicat en santé du Québec. Une analyse de contenu de 1118 formulaires nous a permis de saisir la nature des situations dénoncées, d’identifier des stratégies additionnelles de divulgations infirmières et de documenter les réponses administratives. Les dénonciations, issues majoritairement d’infirmiers(ères) autorisés(es) en milieux de soins hospitaliers et de soins de longue durée, concernaient principalement la lourdeur et l’instabilité des conditions de pratique. Le recours au formulaire s’inscrivait dans une démarche de dénonciation plus large motivée par la présence de risques pour les patients et le personnel ainsi qu’une détresse morale. Le recours au temps supplémentaire était la principale réponse administrative aux situations dénoncées. Notre étude suggère que la plateforme répondait partiellement aux besoins des infirmiers(ères) et présentait certaines limites liées à sa conception et à la nature des informations recueillies. Elle souligne également l’importance d’améliorer les canaux de dénonciation interne, indispensables à la résolution de situations problématiques et au maintien de soins sécuritaires.

Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service. Specifically, this article examines how clinical hurdles outlined in the neuropalliative literature were experienced and addressed by multiple stakeholders, including patients, families, and clinicians. These clinical hurdles include locating the scope of neuropalliative care, ascertaining the impact of prognostic uncertainty and poor recognition of the dying patient, and navigating the tensions between curative and palliative philosophies. In the discussion, the implications of these clinical hurdles are addressed, concluding with reflections on the role of ethnography, palliative care in the context of functional changes, and broadening approaches to uncertainty.

Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service. Specifically, this article examines how clinical hurdles outlined in the neuropalliative literature were experienced and addressed by multiple stakeholders, including patients, families, and clinicians. These clinical hurdles include locating the scope of neuropalliative care, ascertaining the impact of prognostic uncertainty and poor recognition of the dying patient, and navigating the tensions between curative and palliative philosophies. In the discussion, the implications of these clinical hurdles are addressed, concluding with reflections on the role of ethnography, palliative care in the context of functional changes, and broadening approaches to uncertainty.

Neuropalliative care developed to address the needs of patients living with life-limiting neurologic disease. One critical consideration is that disease-related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision-making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life.

The number of caregivers and people living with dementia and other related forms of cognitive impairment is increasing worldwide. Compared to heterosexual and cisgender individuals, studies suggest that lesbian, gay, bisexual, queer, or other sexual and/or gender minority people (LGBTQ+) are at a higher risk for known risk factors for cognitive impairment and dementia, stemming from minority stress experiences. Limited research has explored the distinct obstacles that LGBTQ+ people with cognitive impairment and caregivers encounter, especially within dementia care. The purpose of this study was to deepen our understanding regarding LGBTQ+ people with cognitive impairment and caregivers' experiences with dementia care spaces, and to identify the strategies that they perceive as effective in creating safer and more inclusive spaces. Fourteen LGBTQ+ participants aged 27-78 (M = 58.07), consisting of two individuals with cognitive impairment and 12 caregivers, were interviewed about the care needs of LGBTQ+ people with cognitive impairment and caregivers, and their experiences with dementia care spaces. Using reflexive thematic analysis, we identified three overarching themes from the data, indicating that LGBTQ+ people with cognitive impairment and caregivers feel left "on the margins" of dementia care and express a desire for their identities to be celebrated and recognized. Additionally, they proposed recommendations for policy change to foster safer and more inclusive spaces for dementia care. The findings call attention to the negative experiences of LGBTQ+ people with cognitive impairment and caregivers with dementia care, but also highlight the ways in which care practices can be transformed to effectively address their care needs.

Loss and grief are common occurrences. However, North American society is often considered as denying grief, with expressions of grief being hidden or misunderstood. Grief literacy is a movement which aims to increase understanding of grief. Mainstream media is one avenue by which public understandings of grief both are reflected and shaped. In this paper, we focus on the Netflix series Queer Eye to explore how it represents grief. A framework analysis was applied to 57 episodes, focusing on the ways in which the topic of grief is engaged, the narratives of grief are presented as well as demonstrations addressing grief literacy. Missed opportunities for engaging with grief are also detailed. The Queer Eye series challenges myths about grief and contributes to furthering grief literacy.

L’aide médicale à mourir (AMM) est légalement permise depuis 2015 au Québec et depuis 2016 ailleurs au Canada. Même dans les régions où la mort assistée est pratiquée depuis des décennies, peu d’attention a été portée aux personnes qui ont perdu un proche dans ces circonstances. On ne sait donc pas exactement quels effets peut avoir l’AMM sur le vécu du deuil des personnes concernées, et encore moins en situation de pandémie. À partir des données quantitatives et qualitatives du projet Covideuil, cet article entend éclairer plus précisément le vécu du deuil à la suite du décès par AMM d’un proche pendant la pandémie de COVID-19 au Canada. Il ressort de ces analyses que l’AMM ne semble pas être associée à une trajectoire de deuil distincte pendant la pandémie. Ce type de décès nécessite cependant que les intervenants sociosanitaires portent une attention particulière aux proches de la personne décédée, car leur accompagnement est moins systématisé que pour les soins palliatifs.

Nurses play a key role in integrating palliative care into oncology. This project sought to better understand oncology nurses' perspectives about palliative care. Nurses from a community hospital were presented with a series of clinical scenarios and asked to comment on the appropriateness of palliative care in each case. A series of focus groups were held, inviting nurses' reflections about palliative care in relation to their practice. Nurses commenting on the clinical scenarios were unanimous that palliative care was appropriate in the most straightforward case: older adult, approaching the terminal phase of a cancer, having exhausted all curative treatment options, accepting death, wanting comfort, and contending with difficult symptoms. However, opinions on appropriateness varied in less straightforward cases, such as when patients did not accept death or when their cancer diagnosis was recent. In focus groups, nurses described a hybrid professional identity that integrates both oncology and palliative care. To them, this integration constituted the meaning of “cancer care.” They further reflected on tensions they experience between their proximity to patients in everyday care and their (in)abilities to meet palliative care needs. Results suggest the need for stronger institutional supports of cancer nurses' palliative practice.

The experiences of nurses who blew the whistle during the COVID-19 pandemic have exposed gaps and revealed an urgent need to revisit our understanding of whistleblowing. AIM:The aim was to develop a better understanding of whistleblowing during a pandemic by using the experiences and lessons learned of Quebec nurses who blew the whistle during the first wave of COVID-19 as a case study. More specifically, to explore why and how nurses blew the whistle, what types of wrongdoing triggered their decision to do so and how context shaped the whistleblowing process as well as its consequences (including perceived consequences). DESIGN:The study followed a single-case study design with three embedded units of analysis. METHODS:We used content analysis to analyse 83 news stories and 597 forms posted on a whistleblowing online platform. We also conducted 15 semi-structured interviews with nurses and analysed this data using a thematic analysis approach. Finally, we triangulated the findings. RESULTS:We identified five themes across the case study. (1) During the first wave of COVID-19, Quebec nurses experienced a shifting sense of loyalty and relationship to workplace culture. (2) They witnessed exceedingly high numbers of intersecting wrongdoings amplified by mismanagement and long-standing issues. (3) They reported a lack of trust and transparency; thus, a need for external whistleblowing. (4) They used whistleblowing to reclaim their rights (notably, the right to speak) and build collective solidarity. (5) Finally, they saw whistleblowing as an act of moral courage in the face of a system in crisis. Together, these themes elucidate why and how nurse whistleblowing is different in pandemic times. CONCLUSION:Our findings offer a more nuanced understanding of nurse whistleblowing and address important gaps in knowledge. They also highlight the need to rethink external whistleblowing, develop whistleblowing tools and advocate for whistleblowing protection. IMPACT:In many ways, the COVID-19 pandemic has challenged our foundational understanding of whistleblowing and, as a result, it has limited the usefulness of existing literature on the topic for reasons that will be brought to light in this paper. We believe that studying the uniqueness of whistleblowing during a pandemic can address this gap by describing why and how health care workers blow the whistle during a pandemic and situating this experience within a broader social, political, organizational context.

As nurses, we hear about mindfulness all the time, but what does that actually mean in practice? In this book readers are invited into conversation to explore how mindfulness influences palliative care nurses’ approaches to caring for themselves and others through experiences of living-dying. Under the guise of stress reduction and self-care, the assumption often made is that mindfulness can smooth out difficult experiences. Instead, the objective of this inquiry is not to bypass the practice of caring in those spaces that are really hard, but to understand how nurses are working directly within them. Calling out from the shadows—and our bodies—the intensity of palliative care nursing practice arises. In this text, a dialogue unfolds of nurses caring in deeply meaningful practice environments while searching for ground that is perpetually shifting, uncertain, and fraught with suffering and strong emotion. Integrating literature across nursing, sociology, and contemplative scholarship, evocative stories from palliative care nurses lead in this conversation—their words in italics—showing how they are guided into action through connection with-in their bodies. At other times, stories show how nurses are taking pause and drawing on various somatic practices to unravel entanglements that touch on their own humanity. These stories also offer insight into how systemic forces, across educational and organizational institutions, are either enhancing or constraining the way nurses engage mindfulness as a relationally embodied ethic of care. This insightful volume is not a how-to guide, rather it is a timely resource exploring approaches for palliative care nurses to care for themselves and others with mindfulness and compassion. Those seeking nuanced perspectives, particularly in relation to embodying mindfulness through suffering and strong emotion, will be drawn to this text. Qualitative researchers studying emotionally sensitive topics may also find inspiration in the narrative, arts-based, and embodied methods that shape this inquiry.

How can health care providers (HCPs) working with 2SLGBTQ+ patients enact a whole person care approach during the SARS-CoV-2 pandemic and its aftermath, and in such desperate times, is it even reasonable to expect them to? In this presentation, a nurse/nursing educator and a health care researcher/frequent patient discuss their observations and experiences of whole person care during the SARS-CoV-2 pandemic. The conversation highlights that in the immediate chaos early on, and in the face of exhaustion, trauma, and burnout as the pandemic progressed, attending to the whole personhood of patients was/is paramount for HCPs and for the people they treat. The presenters reflect on the amplified significance of a whole person approach for 2SLGBTQ+ people who may have had negative health care experiences in the past, and may fear that they will not receive equitable care in the chaotic context of a pandemic. A whole person care approach is perhaps most necessary when it is also most difficult. In a period of such profound distress, a deeper sense of connectedness to patients may help HCPs manage feelings of helplessness they are likely to encounter, and surely helps the people they treat. The goal of this presentation is to begin a discussion about the ways that whole person approaches benefit 2SLGBTQ+ patients as well as their HCPs, with the hope that it will spark ideas for attendees to develop in their own practices.