Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
Depuis la loi Claeys-Leonetti, les patients peuvent demander aux équipes médicales de pratiquer la sédation profonde et continue maintenue jusqu'au décès dans un cadre spécifique. Pour pouvoir la mettre en place, des staffs ont lieu où la délibération est un temps d'échange qui doit permettre de trouver un consensus afin d'avoir une décision finale validée et reconnue par tous. La délibération qui aboutit à une prise de décision consensuelle n'a pas toujours lieu ou ne répond pas toujours aux demandes des soignants. Notre questionnement et nos recherches ont mené notre réflexion sur "Pourquoi la décision en équipe interdisciplinaire amène des incompréhensions dans l'équipe ?". Pour essayer de répondre à cette question, nous avons cherché les liens entre "délibération" et "décision consensuelle" d'une part et d'autre part les liens entre la "décision consensuelle" et le "premier vécu des soignants quant à la S.P.C.".
Background: Physicians who receive a request for euthanasia or assisted suicide may experience a conflict of duties: the duty to preserve life on the one hand and the duty to relieve suffering on the other hand. Little is known about experiences of physicians with receiving and granting a request for euthanasia or assisted suicide. This study, therefore, aimed to explore the concerns, feelings and pressure experienced by physicians who receive requests for euthanasia or assisted suicide.
Methods: In 2016, a cross-sectional study was conducted. Questionnaires were sent to a random sample of 3000 Dutch physicians. Physicians who had been working in adult patient care in the Netherlands for the last year were included in the sample (n = 2657). Half of the physicians were asked about the most recent case in which they refused a request for euthanasia or assisted suicide, and half about the most recent case in which they granted a request for euthanasia or assisted suicide.
Results: Of the 2657 eligible physicians, 1374 (52%) responded. The most reported reason not to participate was lack of time. Of the respondents, 248 answered questions about a refused euthanasia or assisted suicide request and 245 about a granted EAS request. Concerns about specific aspects of the euthanasia and assisted suicide process, such as the emotional burden of preparing and performing euthanasia or assisted suicide were commonly reported by physicians who refused and who granted a request. Pressure to grant a request was mostly experienced by physicians who refused a request, especially if the patient was =80 years, had a life-expectancy of =6 months and did not have cancer. The large majority of physicians reported contradictory emotions after having performed euthanasia or assisted suicide.
Conclusions: Society should be aware of the impact of euthanasia and assisted suicide requests on physicians. The tension physicians experience may decrease their willingness to perform euthanasia and assisted suicide. On the other hand, physicians should not be forced to cross their own moral boundaries or be tempted to perform euthanasia and assisted suicide in cases that may not meet the due care criteria.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
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.
OBJECTIVE: To explore the experience of intensive care nurses when participating in the withdrawal of life-sustaining treatments from intensive care unit patients.
DESIGN AND METHODS: A qualitative descriptive and explorative design. Data were collected in 2017 and 2018 by interviewing nine intensive care nurses. The data were analysed by using systematic text condensation.
SETTING: The nine intensive care nurses interviewed worked in four different intensive care units located in one university hospital and one local hospital.
MAIN OUTCOME MEASURES: Experiences when participating in the process of withdrawing life-sustaining treatments.
FINDINGS: Three categories emerged from the data analysis: ICU nurses' experiences of stress in the process of treatment withdrawal; a requirement for interdisciplinary support and cooperation; and elements to achieve a dignified treatment withdrawal process.
CONCLUSION: The intensive care nurses experienced challenges and emotional reactions when patients were overtreated or when they had to participate in treatments they did not agree with. They considered debriefings to be helpful in dealing with emotions. Thorough planning, good communication, pain relief, and the creation of a peaceful environment were perceived as important elements in achieving a dignified treatment withdrawal process.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.
Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).
Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.
Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.
Ce travail de mémoire essayera de déterminer pourquoi la prise en charge de la souffrance existentielle chez des patients en situation palliative met les praticiens amenés à les prendre en charge en difficulté. Dans une première partie, nous aborderons le cadre conceptuel de la souffrance existentielle et de la sédation profonde et continue. La deuxième partie abordera la méthode de ce travail de recherche puis les résultats. Dans une dernière partie, les résultats de cette étude seront discutés au regard des données de la littérature actuelle.
[Extrait du mémoire]
BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.
RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.
CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
BACKGROUND: Palliative simulation is a beneficial bridge between theory and practice; however, it can be emotionally laden. Often overlooked during a debrief session of a palliative simulation is ensuring that participants have the skills to process the feelings they may experience.
METHOD: The purpose of this mixed-methods concurrent triangulation study was to understand the perceived value and usefulness of debriefing in palliative simulation process feelings and emotions.
RESULTS: The simulation modality affects the intensity of feelings. A debriefer who is skilled in both debriefing simulation and coping with emotionally stressful situations allowed students to feel prepared to cope with their own feelings about palliative care. Having other students talk about their feelings in debriefing helped students to normalize their feelings.
CONCLUSION: The debriefing in palliative-based simulations requires additional considerations regarding modality and the skill set of the debriefer to adequately assist students to process feelings and emotions.
Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice.
Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting.
Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data.
Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings.
Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
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.
Les services de réanimation sont pourvoyeurs de nombreuses sources de détresse morale et émotionnelle. La mort y est omniprésente, et son accompagnement, bien encadré par les lois, permet au patient de partir avec dignité, et entouré de ses proches. L'accompagnement des familles est un élément de satisfaction et de diminution de l'incidence des complications psychologiques. Pour les soignants il reste encore du travail, notamment dans la prévention du burn-out.
L'accompagnement en réanimation est une expérience limite, tissée d'incertitudes. Situation étrange que de marcher avec le patient sur un fil, au-dessus des possibles riches de promesses ou d'absences. Qui est-ce que j'accompagne : un patient encore vivant vers la mort ? Un patient presque mort vers la vie ? Ou s'agit-il d'autre chose encore ?
Au-delà des difficultés et exigences inhérentes à la clinique hospitalière lourde, la réanimation implique "un autre monde" propre à l'humain réanimé. Elle convoque une disposition d'esprit, une information relative aux enjeux, conditions, effets et nécessités d'une réalité interne, d'un vécu, impensable pour autrui, paradoxal parce qu'aux antipodes des apparences et du fonctionnement psychique normal, opaque et méconnu même des professionnels, soignants et réanimateurs qui la côtoient au quotidien.