Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

Intentional presence and the accompaniment of dying patients.

In this paper, we offer a phenomenological and hermeneutical perspective on the presence of clinicians who care for the suffering and dying patients in the context of end-of-life care. Clinician presence is described as a way of (1) being present to the patient and to oneself, (2) being in the present moment, and (3) receiving and giving a presence (in the sense of a gift). We discuss how presence is a way of restoring human beings' relational and dialogical nature. To inform a different perspective on relational ethics, we also discuss how accompaniment refers to the clinician's awareness of the human condition and its existential limits.

Acknowledging bereavement, strengthening communities: Introducing an online compassionate community initiative for the recognition of pandemic grief.

Despite public health measures and collective efforts, millions of individuals have unfortunately died from COVID-19 complications worldwide, leaving several million family members at risk of developing bereavement complications. In the Canadian province of Quebec, where substantial deaths were associated with COVID-19, we established an online support community for bereaved caregivers who lost a loved one during the pandemic. We explain how we created a community that recognized pandemic grief and advocated for its wider acknowledgment. We discuss "compassionate communities," the theoretical underpinning of our initiative, as a means to foster solidarity, normalize finitude, create and maintain a safe social space through group sharing, and challenging capitalist principles. We then describe the eight areas of activities inspired by the Charter of Pallium Canada: education and training, hospices and nursing homes, media and social media, commemoration, celebrations, artistic practices and storytelling, marginalized populations, and review and evaluate. We propose that online communities constitute a powerful space for community members to gather and advocate for greater awareness of the inequities found in end-of-life care and bereavement services, to denounce abusive situations experienced by many individuals who died from COVID-19 complications, and to fight against the lack of recognition experienced by numerous caregivers.

"I couldn't": A phenomenological exploration of ethical tensions experienced by bereaved family members during the pandemic.

INTRODUCTION: The COVID-19 pandemic entailed significant changes in accompaniment, end-of-life, and bereavement experiences. In some countries, public health measures prevented or restricted family caregivers from visiting their dying loved ones in residences, long-term care institutions, and hospitals. As a result, family members were faced with critical decisions that could easily lead to ethical dilemmas and moral distress. AIM: This study aimed to understand better the experience of ethical dilemmas among family caregivers who lost a loved one. METHDS: We interviewed twenty bereaved family caregivers and analysed their narratives using Interpretative phenomenological analysis. RESULTS: Our analysis suggests that family caregivers struggled with their multiple responsibilities (collective, relational, and personal) and had to deal with the emotional cost of their choices. Results display three emerging themes describing the experience of ethical struggles: (1) Flight or fight: Struggling with collective responsibility; (2) Being torn apart: Assuming relational responsibility and (3) "Choosing" oneself: The cost of personal responsibility. DISCUSSION/CONCLUSION: Results are discussed and interpreted using an ethical, humanistic, and existential conceptual framework.

A Phenomenological and Clinical Description of Pandemic Grief: How to Adapt Bereavement Services?

Background: Some studies suggest that individuals having lost a loved one during the COVID-19 pandemic report higher levels of grief reactions than people bereaved from natural causes. Little is known about the lived and subjective experience of individuals who lost a loved one under confinement measures. Aim: This research aims to provide a phenomenological description of pandemic grief (PG) that can be useful in clinical settings and bereavement services. Methods: Seventy-six qualitative phenomenological interviews have been conducted with 37 individuals who have lost a loved one during the first wave of the pandemic. Interpretative phenomenological analysis was performed following Tracy's criteria for rigorous qualitative research. Results: The experience of PG comprises clinical manifestations and can be described as "a type of grief occurring in the context of a pandemic, where applicable public health measures have precedence over end of life and caregiving practices as well as funeral rituals, overshadowing the needs, values, and wishes of the dying individuals and those who grieve them." Discussion/Conclusion: This study is the first to provide a phenomenological and experiential understanding of PG. Our phenomenological description can be helpful in clinical settings such as bereavement services within palliative care teams.

The incurable metastatic breast cancer experience through metaphors: the fight and the unveiling.

Purpose: War metaphors are omnipresent in public and medical discourse on cancer . If some studies suggest that cancer patients may view their experiences as afight, few studies focus on the metaphors that patients create from their subjective experiences. The aim was to better understand the experience of four women with incurabale metastatic breast cancer from the metaphors they used in personal cancer blogs.Methods: An interpretive phenomenological analysis (IPA) was used to analyze these women's experience and metaphors of cancer.Results: Two metaphors carried the meaning of metastatic breast cancer experience: the fight and the unveiling. The results show that the war metaphor had a unique meaning for the bloggers who lived with incurable breast cancer: they revealed the difficulty of fighting cancer and eventually collapsing in battle, although a renewed look at life had developed in parallel to their struggle. The bloggers thus tried to lift the veil on this complex experience.Conclusion: The results highlight the need for women with metastatic breast cancer to be able to tell and share their experience in a supportive context and to reinvest the war metaphor in order to express themselves in a more authentic way.

Expressing grief through metaphors: family caregivers' experience of care and grief during the Covid-19 pandemic.

PURPOSE: The COVID-19 pandemic has disrupted thousands of individuals' experience of caregiving and grief. This qualitative study aimed to gain in-dept understanding of family caregivers' lived experiences of caregiving and bereavement in the context of the COVID-19 pandemic in Quebec, Canada. The study also aimed at providing new insight about caregiving and bereavement by analysing the metaphors family caregivers use to report their experiences. METHODS: The design of this study was guided by an interpretative phenomenological approach. In-depth interviews were conducted with twenty bereaved family caregivers who had lost a loved one during the first waves of the pandemic. RESULTS: Results indicate that bereaved family caregivers lived and understood their experience in terms of metaphoric cut-offs, obstructions and shockwaves. These three metaphors represented the grief process and the bereaved's quest for social connection, narrative coherence and recognition. CONCLUSION: By identifying the meaning of the bereaved's metaphors and the quest they reveal, our study underlines the singularity of pandemic grief and points to the value and meaning of caregiving with regard to the grieving process.

From powerlessness to recognition the meaning of palliative care clinicians' experience of suffering.

Palliative care (PC) clinicians work alongside people who are at the end of their lives. These patients face death and suffering, which may also cause significant suffering for the PC clinicians themselves. Previous studies suggest that a significant number of PC professionals suffer from compassion fatigue, vicarious trauma and burnout. However, very few studies have attempted to better understand the meaning of PC clinicians' lived experience of suffering in its complexity and intricacy. Drawing upon Interpretative Phenomenological Analysis (IPA), this study aimed to explore the PC clinicians' experience of suffering from a phenomenological and existential perspective. In-depth interviews were conducted with twenty-one specialized PC clinicians who were all part of the same multidisciplinary team. Interviews were analysed using IPA. The three emerging essential themes describing the meaning of clinicians' suffering were 1) Suffering as powerlessness; 2) suffering as non-recognition and 3) easing suffering: the promise of recognition. Result interpretation was based on Paul Ricoeur's existential phenomenology of suffering and recognition. The conclusion calls for support initiatives and interventions aimed at promoting recognition among PC clinicians on personal, professional, and institutional levels.