Entrer dans un service de réanimation pédiatrique, c'est aller "dedans". Là-bas, on est dedans ou dehors, pas de nuance, pas d'entre-deux... a priori. De l'extérieur, les événements peuvent paraître tranchés, les décisions assurées. On parle en termes de réussite oou d'échec, de vie ou de mort.
The use of multidimensional scales for assessing fear of death among nursing students can assist in teaching and evaluating the effectiveness of targeted training in thanatology. Research has demonstrated good psychometric characteristics of the Czech version of the Collett–Lester Fear of Death Scale (CL-FODS). It was applied to nursing students (N = 256), who reported as their biggest fear the process of their own dying. Greater fear of death and dying was found in students who had no experience of the dying and death of a loved one. Good internal consistency was achieved for the four subscales of the Czech CL-FODS.
The aim of this cross-sectional study was to investigate attitudes of New Zealanders toward death and dying. We administered an online version of Collett–Lester Fear of Death Scale and Concerns about Dying Instrument subscales to a representative sample of the New Zealand population. One thousand one people responded to the survey, where the largest age-group lay between 30 and 39 years. Respondents with strong religious beliefs showed strongest agreement to being anxious about their own death compared to those who have no religious beliefs (p = .0005). Conversely, participants with strong spiritual beliefs did not feel anxious about dying (=.0005). Participants with strong family connections believed their religion/spirituality helped them think about death compared to those with weak family connections (p > .0001). Our findings show that strong religious beliefs significantly predict higher levels of death anxiety compared to participants with strong spiritual beliefs. This is probably due to the cultural identity of those sampled.
Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God’s kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God’s blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.
Deaths in long-term care (LTC) facilities in Canada have increased over the years,1,2 yet the link between exposure to deaths and dying and staff well-being has rarely been investigated. In this study, we examined predictors of staff burnout, focusing specifically on exposure to deaths and dying in LTC.
En 2009, au Portugal, la fondation Calouste Gulbenkian met en place un programme de soins palliatifs à domicile sur le plateau mirandais, dans la région rurale de Tras-os-Montes. Ce projet a inspiré à la journaliste ce livre en deux parties : une réflexion à la fois intime et universelle, aux accents poétiques et philosophiques, sur la fin de vie, suivie des portraits d'individus mourants.
The study examined the influence of training on first-year nursing department students’ attitudes on death and caring for dying patients. Utilizing the experimental model, the study sample consisted of 81 first-year students attending the nursing department of a university. Death Attitude Profile-Revised and Frommelt Attitude toward Care of the Dying Scale were used for data collection. Data analysis included means, standard deviation, and t test for related samples. Student attitudes toward death were measured as 146.43 (16.741) and 152.75 (15.132) for pre- and posttraining, respectively. Student attitudes toward caring for dying patients were established to be 103.02 (7.655) during pretraining period and 111.02 (10.359) at posttraining period. The difference between pre- and posttests for mean attitudes toward death and caring for the dying patient was statistically significant. Study results determined that training was effective in forming positive student attitudes toward death and caring for dying patients.
St Christopher’s Hospice, London, was founded to provide specialist care to the incurably ill. We studied the dimensions of difference that set St Christopher’s Hospice apart from hospital care of the dying, focusing on physical space and social organization. Material from 1953 to 1980 from the Cicely Saunders Archive was analyzed qualitatively. Through thematic analysis, quotes were found and analyzed using open coding. Five themes were developed. Themes identified were home/homelike, community, consideration of others, link with outside world, and privacy. The hospice philosophy functioned as the catalyst for the development of the physical environment of St Christopher’s Hospice. Taking Habermas’ concept of lifeworld, it seems that, in contrast to acute care, the need for hospice to formulate their own lifeworld to support and fully engage patients was central. As lifeworlds are culture sensitive, this underlines the need for variation in design and organization of hospices around the world.
I explore the complexities of moral experience during the phase of life after a terminal diagnosis by examining the experiences of one woman living as a hospice patient in St. Croix, US Virgin Islands. Introducing the notion of “existential ambivalence,” I show that this can be a period of deep uncertainty, in which what matters to individuals can shift and fluctuate through time, not necessarily lining up with collective ideals of “the good death.” I focus on a promise this woman made that continued to pull her toward a version of living well while she was also pulled toward dying.
Building on work on post-Fordist affect, we argue that the group-based and person-centered forms of production in mining and milling, respectively, produce contingent conceptualizations of culture, identity, and personhood and, in turn, of dying and death. The “communal solidarism” characteristic of post-mining milieu engenders senses of dying and death entailing a communal merging of erstwhile individual selfhoods. In post-milling milieu dying and death are conceptualized as individuated, but subject to social evaluation. The evaluative criterion in this regard is ability to “perform” dying and death in ways that reflect the valorized essence of local culture, identity, and personhood, “resilient autonomy.”
In this introduction to the special issue, Life’s End: Ethnographic Perspectives, we review the field of anthropological studies of death and dying. We make the argument that, largely because of its sub-disciplining into the larger field of the anthropology of religion, ritual and symbolism, the focus of anthropological research on death has been predominantly on post- rather than pre-death events, on death’s beginnings rather than life’s ends. Additionally, we argue that an anthropological aversion to the study of dying may also lie in the intimacy of the discipline’s principal method, ethnography. Contrastingly, we argue that this very methodological intimacy can be a source of insight, and we offer this as a rationale for the special issue as a whole, which comprises eight ethnographic studies of dying and social relations at life’s end from across Africa, Australia, Europe, and North America. Each of these studies is then summarized, and a rationale for their presentation around the themes of “structures of dying,” “care for the dying,” “hope in dying,” and “ending life” is presented.
In recent years, the common and mundane dying has begun to take place in the public space of the Internet. Among the blogs about food, fashion, travel, and other joyful aspects of life, blogs about severe disease and dying have appeared. The aim of this article is to describe some characteristic features of a sample of cancer blogs and to discuss them in the light of Zygmunt Bauman’s theory of the rationalization of death in modernity and theories about networked media, especially the theories about “affective labor” and “ambient intimacy” by McCosker, Darcy, and Pfister. It will then be argued that an affective communication is performed in and through these cancer blogs, where not only language but also the deficiencies of language—and what is called shared ineffability—might be valuable and meaningful (although not unproblematic) as part of a late modern approach to death, and in the practicing of the art of dying.
This study aims to elicit the beliefs and attitudes of middle-aged and elderly Moroccan Muslim women toward dying, death, and the afterlife; to identify whether differences are observable between middle-aged and elderly participants and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the belief in an omnipotent and omniscient God and in an afterlife strongly marks the attitudes of first- and second-generation Muslims in Belgium toward life and death.
Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.
Terminal delirium is a distressing irreversible process that occurs frequently in the dying phase, often misdiagnosed and undertreated. A previous study in our organization revealed that terminal delirium was a poorly managed symptom at end of life. Pharmacological options are available in an existing order set to manage this symptom. The management plans of 41 patients identified as having terminal delirium were further evaluated. Elements extracted included medications prescribed to manage terminal delirium, whether medication changes occurred, and whether they were administered and effective. Patients with the order set were more comfortable as compared with the group without. Both groups had several changes made by the palliative care team. Nurses did not administer prescribed as-needed medication to more than one-third of patients. Modifications will be made to the existing order set, and additional education for staff will be organized.
In this Australian, constructivist grounded theory study, we undertook in-depth interviews with 11 dying people and 8 caregivers to examine their perspectives on role relations at end-of-life. We found that situations of role alignment between dying people and their family and friends support positive relational and practical outcomes, whereas role mismatch can cause considerable distress. Factors contributing to role mismatch at end-of-life were: dying people and their caregivers’ efforts to shield each other from emotional harm; fear of social exclusion; and unwanted focus on the dying identity. Our findings highlight a need for flexibility and adaptability in end-of-life role relations.
BACKGROUND: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life.
AIM: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research.
DESIGN: An adapted meta-narrative review approach.
DATA SOURCES: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument.
RESULTS: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals.
CONCLUSION: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative.
Introduction: Older patients with hip fracture have a 20% to 30% mortality rate in the year after surgery. Nonoperative care has higher 1-year mortality rates and is generally only pursued in those with an extraordinarily high surgical risk. As the population ages, more patients with hip fracture may fall into this category. The orthopedic surgeon is typically the main consultant responsible for deciding between surgery and conservative management, and the reasoning behind one decision over the other is often poorly understood. We undertook a review to determine decision-making tools for surgery in high-risk patients with hip fracture.
Materials and Methods: A review was conducted using PubMed to determine articles published using the terms palliative care, conservative care, nonoperative, hip fracture, orthopedic procedures, fracture fixation, and surgery. Our search resulted in 13 articles to review. These were further screened to determine tools for use in surgical decision-making.
Results: Several potential decision-making tools were found in our search. The potential tools to identify patients who would benefit from nonoperative treatment included the Palliative Performance Scale for severe dementia, the Lawton Instrumental Activities of Daily Living and Katz Activities of Daily Living scales for prefracture immobility, a combination of clinical signs and laboratory tests to determine risk of imminent death, and the Charlson Comorbidity Score for additional serious comorbidities. No tools have been prospectively tested in a clinical setting.
Discussion: Evaluation of each patient using a variety of decision making tools should help the orthopedic surgeon determine which patients would be better suited to non-operative management. After determining the benefit of non-operative care, they must effectively allow the fracture to heal while ameliorating pain. Palliative care physicians can fulfill this role by providing support and symptom relief.
Conclusions: Surgical decision-making for hip fracture repair in the elderly patients is not straight forward. Several tools may be helpful to the surgeon in determining who may be better suited for nonoperative care or a palliative care referral. Prospective data do not exist in these decision-making tools.