Que sont devenus les rituels de mort ? La récente pandémie a rendu cette question encore plus pressante, même si elle s’impose à nous depuis plusieurs décennies. Comment s’explique dans les mentalités la montée de la crémation ? Que penser des formes de communication relatives à la mort sur les réseaux sociaux et sur les sites commémoratifs en ligne ? Quelles sont les conséquences de ces pratiques sur les moments du rituel, sur le sort des restes humains, sur l’aménagement des traces matérielles du souvenir ? Et sur l’expérience du deuil ?
Luce Des Aulniers s’appuie sur plus de quarante ans de recherches en socioanthropologie des rapports à la mort pour nous aider à choisir de façon éclairée les manières de nous refabriquer, comme individu, comme collectivité, à travers le passage de la mort et de nos morts.
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Ce livre fournit des repères réflexifs sur les pratiques soignantes pour les acteurs du soin, les formateurs et les étudiants dans un contexte où de nombreuses questions éthiques ont émergé.
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Les étudiants en soins infirmiers répondent activement aux exigences universitaires. Ils seront amenés à relever des défis autour d’une pratique soignante légiférée. Les professionnels, les cadres, les apprenants sont tous concernés par les concepts en sciences infirmières pour argumenter le « prendre soin ». La recherche infirmière évolue au regard de l’accélération des progrès scientifiques et techniques. Celle-ci est indissociable des soins relationnels pour développer des compétences transversales, au bénéfice des personnes soignées. Ce dictionnaire permet d’ancrer une identité professionnelle au regard de la singularité des individus, dans un contexte académique. La terminologie favorise l’acquisition d’une posture dite réflexive.
Cette 5e édition est enrichie avec des concepts interprofessionnels. L’approche reste humaniste. Elle est basée sur des apports théoriques en psychologie sociale. Des spécialistes ont rédigé des articles innovateurs pour s’inscrire dans le champ de la recherche interdisciplinaire. Ce dictionnaire sera utile dès le premier semestre en formation initiale pour construire des « analyses de pratiques » jusqu’au mémoire de fin d’études. Les infirmier.ières en pratique avancée y chercheront des repères. Les professionnels y trouveront une aide précieuse pour interroger la relation soignant-soigné.
Cet ouvrage présente une synthèse sur les soins palliatifs, à travers le cadre juridique et éthique. Des dispositions pour améliorer la pratique au quotidien sont présentées, montrant comment les soins doivent être adaptés à ces patients. Avec un descriptif des structures et des dispositifs de proximité ainsi que des exemples de méthodes d'évaluation, cette sixième édition est à jour des dernières dispositions juridiques.
BACKGROUND: Hospitalized patients with serious illness have significant symptom burden and face complex medical decisions that often require goals of care discussions. Given the shortage of specialty palliative care providers, there is a pressing need to improve the palliative care skills of internal medicine (IM) residents, who have a central role in the care of seriously ill patients hospitalized at academic medical centers.
METHODS: We conducted an anonymous survey of IM residents at a large, urban, academic medical center to identify which aspects of palliative care trainees find most important and their knowledge gaps in palliative care. The survey measured trainees' self-assessed degree of importance and knowledge of core palliative care skills and evaluated frequency of completing advance care planning documentation.
RESULTS: Overall, 51 (23%) IM residents completed the survey. The majority of trainees considered multiple palliative care skills to be "very important/important": symptom management, prognostication, introducing the palliative care approach, discussing code status, and breaking serious news. Across these same skills, trainees reported variable levels of knowledge. In our sample, trainees reported completing healthcare proxy forms and Medical Orders for Life-Sustaining Treatment infrequently.
CONCLUSIONS: IM trainees rated core palliative care skills as important to their practice. Yet, they reported knowledge gaps across multiple core palliative care skills that should be addressed given their role as frontline providers for patients with serious illness.
Background: Palliative sedation is used as a last-resort option to treat refractory symptoms of dying patients. Nurses are important participants in the process of sedation. However, little is known about palliative sedation from a nursing perspective.
Objectives: To analyze the practices and attitudes of nurses concerning palliative sedation.
Data sources and review methods: A scoping review guided by Arksey and O`Malley`s methodological framework was used to analyze existing peer-reviewed empirical research on the topic of the practices and attitudes of nurses related to the palliative sedation of patients aged 18 years and older. Of the 316 publications identified from the PubMed, CINAHL and Cochrane Library, 17 full-text articles were included in this review. The data of the included articles were charted (author(s), year of publication, country, objectives, study design, data collection, setting, respondents, definition of palliative sedation, focus of the study and key findings), and the results were summarized with inductive content analysis. The PRISMA-ScR checklist was used as a guideline for the reporting in this review.
Results: During the decision-making concerning the start of palliative sedation, nurses usually have an advocatory and supportive role, although the role varies between different countries. This role then changes to a relatively independent performance of sedation; including administration of the medication, monitoring the effectiveness of sedation, and in some cases taking decisions concerning the medication and dosage policy. Further, nurses provide information and compassionate care to both the patient and the family during the process of palliative sedation. Most nurses view palliative sedation as a positive and sometimes necessary last resort therapy to relieve refractory suffering of dying patients. However, sedation poses ethical problems for many nurses. These problems especially concern the essential elements of deciding to use palliative sedation, the depth of sedation, the potential for shortening life, and the loss of social interaction.
Conclusions: Nurses play a key role in palliative sedation, as they often perform sedation independently and have important information about the needs and wishes of both patients and their families due to their unique position at the bedside of the patient. Although nurses generally see palliative sedation as a positive practice for selected patients, many of them feel it is ethically controversial. This scoping review reveals a great need for further research and discussion on the practices and attitudes of nurses regarding palliative sedation.
Background: Patients with heart failure have palliative care needs that can be effectively addressed by specialist palliative care (SPC). Despite this, SPC utilization by this patient population is low, suggesting barriers to SPC referral. We sought to determine the referral practices of cardiologists to SPC.
Methods: Cardiologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional, and attitudinal factors were analyzed using multiple and logistic regression.
Results: The response rate was 51% (551/1,082). Between 35.1% and 64.2% of respondents were unaware of referral criteria to local SPC services. Of the respondents, 29% delayed SPC referral due to prognostic uncertainty, and 46.8% believed that SPC prioritizes patients with cancer. In actual practice, nearly three-fourths of cardiologists referred late. Referral frequency was associated with greater availability of SPC services for patients with non-malignant diseases (P=0.008), a higher number of palliative care settings accepting patients receiving continuous infusions or pursuing acute care management (P<0.001), satisfaction with services (P<0.001); and less equation of palliative care with end-of-life care (P<0.001). Early timing of referral was associated with greater availability of SPC services for patients with non-malignant diseases and less equation of palliative care with end-of-life care.
Conclusions: the findings suggest that barriers to timely SPC referral include an insufficiency of services for patients with non-malignant diseases especially in the outpatient setting, the perception that SPC services do not accept patients receiving cardiology-specific treatments, and a misperception about the identity of palliative care.
Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care. During the study, we recorded recruitment, retention, data collection rates, and percent completion of the intervention. Structured interviews with the mothers and verbal children were conducted to elicit their experience. Qualitative data were analyzed using thematic analysis. Twenty-one parent-child dyads agreed to participate and signed consent, whereas 16 completed the study (including verbal [n = 8] and nonverbal [n = 8] children). Themes included “feeling better,” “hard to judge,” and “still going on.” Mothers and children were generally positive regarding the experience of receiving Reiki therapy. Children reported they “felt really relaxed,” and mothers stated, “It was a good experience” and “She was relaxed afterward.” The results of this pilot study show that Reiki was feasible, acceptable, and well-tolerated. Most participants reported it was helpful. Reiki therapy may be a useful adjunct with traditional medical management for symptoms in children receiving palliative care.
BACKGROUND: This study aims to measure the effect of guided imagery and hand massage on self-rated wellbeing and pain for palliative care patients.
METHODS: This study adopted a quasi-experimental one-group pre-test post-test design. The sample consisted of n = 20 adult palliative care patients who received one session of guided imagery and hand massage. Self-reported levels of wellbeing and pain were measured on a scale of 0-10 before and after the intervention. Results were analyzed using a one-tailed sign test in SPSS Software.
RESULTS: The intervention elicited a statistically significant improvement in self-reported levels of wellbeing (p = .029) and pain (p = .001). Feedback from participants showed the intervention was helpful and relaxing.
CONCLUSION: The intervention had an immediate positive effect on wellbeing and pain among palliative care patients. Considering the promising results of this pilot study, guided imagery and hand massage should be studied further in the palliative care setting.
Physicians have a long-standing obligation to consider social implications of their practice and its potential influences on health policy. One example of a practice’s influence on policy is determining death by neurologic criteria. By lobbying policymakers, maintaining their diagnostic skills, participating in national medical societies, and contributing to robust discourse, physicians can positively influence practice and policy about death determination by neurologic criteria.
Mismatch between whole-brain death criteria embedded in statutes and accepted tests physicians use to diagnose brain death have clinical and ethical implications that could undermine public trust in death pronouncements. We consider merits and drawbacks of 4 ways to address this problem.
Death determination is fraught with clinical, cultural, and ethics questions. This article considers relevant history that informs the AMA Code of Medical Ethics opinions about neurological criteria for death.
Providing person-centred end-of-life care at home and in care homes during the COVID-19 pandemic has been challenging. These challenges extend beyond the interpersonal communication barriers created by wearing personal protective equipment (PPE) for infection control. Visors and facemasks make it harder to hear soft voice tones or read facial expressions, which are key tools in empathetic communication. Traditional models of care, based on predominantly face-to-face multidisciplinary clinical consultations, have been radically overhauled in the UK and other countries worse affected by the pandemic (Antunes et al, 2020; Costantini et al, 2020). The unprecedented rapid adoption of technology, including video and telehealth consultations, alongside virtual ward rounds and online team meetings, reduces infection risks and may have the advantage of enabling faster access to clinical advice (Powell et al, 2020). However, concerns that health professional home visits would reduce has led to an increased focus on care provision by family members, including, potentially, the administration of end-of-life care medications (Antunes et al, 2020; Johnson et al, 2020). The pandemic has imposed massive stress on care resources, and the changes in healthcare service delivery after COVID-19 look set to be substantial (Antunes et al, 2020; Kasaraneni, 2020). New models of care delivery have also created opportunities for nurses supporting people in community settings to develop their role and skills
PURPOSE: This study aimed to determine the palliative care difficulties experienced by nursing students during their clinical practice.
DESIGN AND METHODS: This descriptive and cross-sectional study was conducted with 305 nursing students at a university in Turkey. Data were collected using a student identification form and the palliative care difficulties scale.
FINDINGS: Nursing students experience a moderate level of difficulty in providing care for palliative care patients and receiving expert support facilitates their care initiatives.
PRACTICE IMPLICATIONS: It is important to support nursing students during their nursing education courses and clinical training, along with psychiatric nursing skills.
Background: South Africa is a very diverse middle-income country, still deeply divided by the legacy of its colonial and apartheid past. As part of a larger study, this article explored the experiences and views of representatives of hospices in the Western Cape province of South Africa on the provision of appropriate spiritual care, given local issues and constraints.
Methods: Two sets of focus group discussions, with 23 hospice participants, were conducted with 11 of the 12 Hospice Palliative Care Association registered hospices in the Western Cape, South Africa, to understand what spiritual care practices existed in their hospices against the backdrop of multifaceted diversities. The discussions were analysed using thematic analysis.
Results: Two prominent themes emerged: the challenges of providing relevant spiritual care services in a religiously, culturally, linguistically and racially diverse setting, and the organisational context impacting such a spiritual care service. Participants agreed that spiritual care is an important service and that it plays a significant role within the inter-disciplinary team. Participants recognised the need for spiritual care training and skills development, alongside the financial costs of employing dedicated spiritual care workers. In spite of the diversities and resource constraints, the approach of individual hospices to providing spiritual care remained robust.
Discussion: Given the diversities that are largely unique to South Africa, shaped essentially by past injustices, the hospices have to navigate considerable hurdles such as cultural differences, religious diversity, and language barriers to provide spiritual care services, within significant resource constraints.
Conclusions: While each of the hospices have established spiritual care services to varying degrees, there was an expressed need for training in spiritual care to develop a baseline guide that was bespoke to the complexities of the South African context. Part of this training needs to focus on the complexity of providing culturally appropriate services.
Objectives :Hospitals are the most common place of death in Australia. Bereavement care is recognised by national standards as being central to providing high-quality care at the end of life, and has significant health implications on morbidity, mortality and health service usage. Despite this, bereavement care is not routinely or systematically provided in most Australian hospitals. This study aimed to develop a comprehensive, evidence-based model of bereavement care specific to the needs of an acute Australian adult tertiary hospital.
Methods:This study used a multiple-methods design, which included a scoping literature review, a survey of current institutional bereavement practices, interviews with bereaved family members and staff focus groups and the development of a model of bereavement care for the acute hospital service through advisory group and expert consensus.
Results:Staff and bereaved family members strongly supported a systematic approach to bereavement, perceiving the need for greater support, training, coordination and follow-up. In all, 10 core elements were developed to support a structured model of bereavement care provision and follow-up for the acute hospital organisation.ConclusionsThis evidence-generated model of care promotes the provision of quality and systematic bereavement care in the acute hospital setting.What is known about the topic?Acute hospitals are the most common place to die in Australia, yet there is a lack of understanding of how bereavement care is or should be provided in these environments. The bereavement period is associated with increased use of health services and worse morbidity and mortality, and thus has significant implications for public health. The provision of bereavement care in acute hospitals is often sporadic, often involving untrained staff who may not provide evidence-based care.What does this paper add?This paper describes the development of a comprehensive, evidence-based model of bereavement care specific to the needs of an Australian acute hospital.What are the implications for practitioners?Developing a consistent approach to bereavement for the acute care sector has the potential to support staff, minimise conflict at the end of life, facilitate recognition of those suffering from difficult bereavement and proactively engage services for these people. It is hoped that such a model of care can find relevance across acute hospitals in Australia, to improve the quality and consistency of bereavement care.
BACKGROUND: Pastoral care in an acute hospital setting necessarily includes some bereavement support for families of patients who die. Termed universal bereavement support, an important component of such support is provision of educational information to assist bereaved people struggling with grief. This project aimed to understand, from the perspective of those attending, the value of providing a memorial service for remembering a loved one and whether the education provided at the service successfully met the requirement of a universal bereavement support strategy.
METHODS: A qualitative study, comprising a semistructured telephone interview with memorial service attendees was undertaken. Data were audio recorded, transcribed and analysed thematically.
RESULTS: Twenty-nine attendees participated. Three themes provided insights into attendees' perceptions. The first theme encapsulated the value of remembering and celebrating the life of the deceased; the second theme focused on 'finding our way through the grief process' including the value of the educational materials ; and the third theme identified appreciation for the hospital in providing care to those bereaved.
CONCLUSION: The memorial service provides a valued universal bereavement support strategy and such support strategies are an important part in the process of grieving for many attendees.
Purpose: The purpose of this study was to explore knowledge and attitudes of health program students towards ethical issues pertaining to the beginning and the end of human life, and associations between these attitudes and demographic variables.
Participants and Methods: The study took a mixed-method approach with self-administered survey questionnaires and in-depth interviews. A total of 88 students participated in the survey, and 10 students participated in interviews. The study was conducted among students in the Health Extension Program at a Christian university in Papua New Guinea.
Results: Students showed a higher acceptance of abortion than euthanasia. More year-4 students presented significantly deeper knowledge of euthanasia and abortion compared to year-1 students. There were no gender differences regarding knowledge and attitude towards these two bioethical issues. The majority of students opposed the idea of women's right to abortion, which is attributed mainly to socio-cultural reasons. The qualitative analysis indicated a very strong perception that having children 'defines' womanhood and also revealed general disapproval of any form of euthanasia. A low level of acceptance of various forms of euthanasia is associated with a respect for older people in Melanesian society and beliefs that ancestors' support is required for achieving prosperity in life.
Conclusion: The study offered a comprehensive description and analysis of students' knowledge and attitudes towards ethical issues pertaining to the beginning and the end of human life. Presented a low level of knowledge towards bioethical issues, together with a small proportion of the knowledge gained from lectures and tutorials, indicated inadequate teaching of bioethics and calls for further improvement. In the perspective of rapid social and cultural changes in the Papua New Guinea society, further studies on changing attitudes towards bioethics issues would be valuable.
The high mortality in intensive care unit (ICU) requires health workers to be able to provide palliative care so that patients die in peace and help the patient's family face the grieving process. The implementation of palliative care must be organized and assessed for the quality of its implementation. The aim was to describe the quality of palliative care in ICU "X" Hospital. The research used Mixed Methods. The first was the quantitative with descriptive research. The sample was 38 nurses and 4 doctors to obtain data on the quality of palliative care with The Self-Report Questionnaire (0-10). The second of qualitative methods to deepen quantitative data with achieved data saturation in 5 nurses and 2 doctors. Retrieval of data from May to July 2019. The results were the quality of palliative care performed by nurses had a score of 6.68, for doctors were 5.19. The lowest score (5.29) was found in the emotional support, and organizational domain for ICU clinicians for nurses with the theme of the role of coworkers and the desire to act alone, for doctors the lowest score (3.93) was spiritual support for patients family with the theme of the absence of operational standards of spiritual support procedures and knowledge and experience of spiritual support. The conclusion is the quality of palliative care services performed by nurses has a score of 6.68 and for doctors was 5.19.