Après avoir vécu une expérience au seuil de la mort, l’auteure, religieuse du Sacré Coeur de Jésus, consacre une partie de son temps à écouter les personnes sur le point de mourir et à les accompagner. Elle témoigne de ces rencontres, qui, au-delà de leur variété, expriment la possibilité d’accomplir son existence, dans cette période finale, à condition d’en accepter les lumières et les ténèbres.
BACKGROUND: Approximately 460 000 people die annually in England. Three-quarters of these deaths are expected. Health Education England is prioritising upskilling of clinical staff in response to reports of poor care quality in the last days of life in acute hospitals, where almost half of all deaths occur. This study explores the impact of an end-of-life care (EoLC) educational intervention, Milestones, in acute hospital trusts in Greater London.
METHODS: This is a mixed methods study. Learners completed a questionnaire pre- (n=452), immediately post- (n=488) and 3 to 8 months post- (n=37) intervention. The questionnaire measured learner confidence in EoLC covering the National Health Service adopted 'Priorities for the Care of the Dying Person'. Paired t-tests were used to determine statistically significant difference in learner confidence pre- and post-intervention. A convenience sample of learners (n=7) and educators (n=5) were recruited to qualitative semi-structured interviews that sought to understand if, how and why Milestones worked. Data were analysed using a thematic approach.
RESULTS: A statistically significant increase in learner confidence across all five priorities of care' was sustained up to 8 months (p<0.001). Interviewees wanted to discuss wider challenges in EoLC related to the organisations and cultural contexts in which they worked. Concerns included balancing hope when decision-making, learning as a multidisciplinary team and emotional impact.
CONCLUSION: The findings suggest that Milestones is a flexible, beneficial resource for teaching EoLC that facilitates enhanced learner engagement. Understanding generated about wider concerns can inform future educational material development, organisational process and research study design.
OBJECTIVES: Adult day service centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (AD) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs.
METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted.
RESULTS: Nine states had a requirement to provide AD information. 80.8% of ADSCs provided AD information. 41.3% of participants had documented ADs. There were significant associations between state requirement, awareness, and providing information with AD prevalence. State requirement was mediated by awareness.
DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.
Background: The “END-of-Life ScorING-System” (ENDING-S) was previously developed to identify patients at high-risk of dying in the ICU and to facilitate a practical integration between palliative and intensive care. The aim of this study is to prospectively validate ENDING-S in a cohort of long-term critical care patients.
Materials and methods: Adult long-term ICU patients (with a length-of-stay> 4 days) were considered for this prospective multicenter observational study. ENDING-S and SOFA score were calculated daily and evaluated against the patient’s ICU outcome. The predictive properties were evaluated through a receiver operating characteristic (ROC) analysis.
Results: Two hundred twenty patients were enrolled for this study. Among these, 21.46% died during the ICU stay. ENDING-S correctly predicted the ICU outcome in 71.4% of patients. Sensitivity, specificity, positive and negative predictive values associated with the previously identified ENDING-S cut-off of 11.5 were 68.1, 72.3, 60 and 89.3%, respectively. ROC-AUC for outcome prediction was 0.79 for ENDING-S and 0.88 for SOFA in this cohort.
Conclusions: ENDING-S, while not as accurately as in the pilot study, demonstrated acceptable discrimination properties in identifying long-term ICU patients at very high-risk of dying. ENDING-S may be a useful tool aimed at facilitating a practical integration between palliative, end-of-life and intensive care.
Trial registration: Clinicaltrials.gov Identifier: NCT02875912; First registration August 4, 2016.
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.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
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.
Context: There has been surprisingly little attention to conceptual and methodological issues that influence the measurement of discretionary utilization at the end-of-life (DIALs), an indicator of quality care.
Objective: To examine how DIALs have been operationally defined, and identify areas where evidence is biased or inadequate to inform practice.
Methods: We conducted a scoping review of the English language literature published from 1/1/04-6/30/17. Articles were eligible if they reported data on =2 DIALs within 100 days of the deaths of adults =18 years old. We explored the influence of research design on how researchers measure DIALs and whether they examine demographic correlates of DIALs. Other potential biases were explored.
Results: We extracted data from 254 articles published in 79 journals covering research conducted in 29 countries, mostly on cancer (69.1%). More than 100 DIALs have been examined. Relatively crude, simple variables (e.g., ICU admissions [56.9% of studies], chemotherapy [50.8%], palliative care [40.0%]) have been studied more frequently than complex variables (e.g., burdensome transitions; 7.3%). We found considerable variation in the assessment of DIALs, illustrating the role of norms and disciplinary habit. Variables are typically chosen with little input from the public (including patients or caregivers) and clinicians. Fewer than half the studies examined age (44.6%), gender (37.3%), race (26.5%), or socioeconomic (18.5%) correlates of DIALs.
Conclusions: Unwarranted variation in DIALs assessments raises difficult questions concerning how DIALs are defined, by whom, and why. We recommend several strategies for improving DIALs assessments. Improved metrics could be used by the public, patients, caregivers, clinicians, researchers, hospitals, health systems, payers, governments, and others to evaluate and improve end-of-life care.
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.