About caregiver suffering in hospice care

EASA Medical Anthropology Network AAA Society for Medical Anthropology Universitat Rovira i Virgili, Tarragona, Catalunya Juny 12-14, 2013

During a year-long fieldwork that I realized in 2011 in a palliative care institution, I encountered cancer and death, but mainly the people who work within this liminal space and alongside liminal bodies, not fully alive, but on their way to something else. The ethnographic encounter that took place between me, the staff and the dying people and their families was mainly realized with, through and about emotions. The main norm regarding the embodied responses to death in this institutionnal setting was a complex control and release system of emotions, with a tendency of the staff to see death and dying as a « beautiful passage », even a « gift », while being able to cry sometimes and « let go ». Something that appeared quite loose in the first place – the right of everyone to approach death as (s)he feels – seemed in fact quite stiff, pointing directly to the presence of what Castra (2003) names a « ritual of pacification », a systematized evacuation of the violent pulsions related to death in palliative care environments. The main challenge of the encounter is to name this social fact and give back to the actors this ethnographic data in a constructive way, while understanding that good intentions and charismatic values, in Weber’s sense, are the basic motives for working with dying people. In fact, my fieldwork adresses directly the emotional dynamics and normativization of the professionalized accompaniment of the dying.

Background Working within the landscape of death and dying, professionals in palliative and hospice care provide insight into the nature of mortality that may be of benefit to individuals facing the end of life. Much less is known about how these professionals incorporate these experiences into their personal lives and clinical practices. Methods This ethnographic inquiry used semi-structured interviews and participant observation to elicit an in-depth understanding of the impact of death and dying on the personal lives of national key leaders (n = 6) and frontline clinicians (n = 24) involved in end-of-life care in Canada. Analysis of findings occurred in the field through constant comparative method and member checking, with more formal levels of analysis occurring after the data-collection phase. Results Eleven specific themes, organized under three overarching categories (past, present and future), were discovered. Early life experiences with death were a common and prominent feature, serving as a major motivator in participants’ career path of end-of-life care. Clinical exposure to death and dying taught participants to live in the present, cultivate a spiritual life, reflect on their own mortality and reflect deeply on the continuity of life. Interpretation Participants reported that their work provided a unique opportunity for them to discover meaning in life through the lessons of their patients, and an opportunity to incorporate these teachings in their own lives. Although Western society has been described as a “death-denying” culture, the participants felt that their frequent exposure to death and dying was largely positive, fostering meaning in the present and curiosity about the continuity of life.

Medical Anthropology Quarterly, 2004

International Health Trends and Perspectives

In palliative care, nursing work is characterized by the concept of suffering as nurses cope with not only the death of patients, but also challenges with interacting with families. This suffering however, if offset by the concept of pleasure, as patients find meaning in illness, pain, and in the acceptance of death as a natural process, which generates pleasure. This reflective discursive presentation is based on the theoretical framework of Dejours’ psychodynamics of work and highlights the area of palliative oncology nursing as a source of suffering and pleasure. The daily life of palliative oncology nurses, subjectivity at work, and constant interactions between psychic, social, individual, and collective factors are discussed. In their clinical practice, palliative oncology nurses break with the prescribed way of engaging in care while building on various meanings of work that transforms and is also transformed. Considerations related to the need for teaching and research activ...

BMC Palliative Care

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 existent...

SAGE Open, 2016

The objective of this study was to consider the social representations of death of family caregivers in a palliative care context. The authors focused on the analysis of 23 interviews with family caregivers who cared for a terminally ill person at home and/or in a specialized palliative care unit, in Québec, Canada. The finding showed that family caregivers had different images that specifically represented death: (a) losses as different kinds of “deaths,” (b) palliative care as a place to negotiate with death, and (c) last times as confirmation of the end. These images highlight the meaning attributed to the body and the position of the dying person in our Western society. Representations of palliative care reveal a kind of paradox, a place of respect and of “gentle death,” and a place where death is almost too omnipresent. They also show the strong beliefs surrounding the use of painkillers at the end of life. Finally, these images refer to end-of-life personal rituals viewed as s...

Sociology of Health and Illness, 1995

Journal of Hospice & Palliative Nursing, 2014

World Futures, 2017

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