De plus en plus souvent, nous entendons parler d'euthanasie : que ce soit par les médias, par les politiques, par les services publics ou par diverses associations, la thématique est sur toutes les langues.
Cependant, force est de constater que le sujet est bien souvent abordé avec méconnaissance ou parti pris. Mon souhait est donc d'intervenir dans cet ouvrage pour décrire le plus fidèlement possible la très dure réalité qui entoure le processus d'euthanasie.
Non, la vie dans nos hôpitaux n'est pas - ou n'est plus - un long fleuve tranquille. Elle est en crue permanente, avec de nombreux débordements quotidiens. En tant que membre du personnel soignant, je constate combien il nous est difficile à nous, infirmiers, médecins, psychologues, assistants sociaux, de garder la tête hors de l'eau, lorsqu'il est question de ce qu'on appelle pompeusement "éthique".
Formée en France, je travaille en Belgique depuis 2015. Je suis médecin généraliste, diplômée en soins palliatifs après deux années de formation théorique et de stages. Avant 2015, j'ai travaillé en France en équipe mobile de soins palliatifs intra et extra hospitalière, ainsi qu'en unité de soins palliatifs.
L'auteur cherche à répondre à la souffrance psychique et existentielle de ses patients. Pour se faire, il utilise les théories de Viktor Frankl car ce psychiatre a consacré toute sa carrière à une recherche empirique sur le sens de la vie.
Partant d'un cas particulier, nous esquisserons d'abord la problématique de l'euthanasie, pour exposer ensuite, sur la base des critères légaux, les différents points épineux de cette pratique, non seulement sur la forme, mais aussi sur le fond.
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En 2015, un long article dans le prestigieux The New Yorker a de nouveau attiré l'attention sur la pratique de l'euthanasie en Belgique, et particulièrement en Flandre. La journaliste Rachel Aviv y donne la parole à trois personnes : chacune, de façon abrupte et tragique, a perdu sa mère par euthanasie. La journaliste cite également quelques réactions des médecins concernés, et interroge des intellectuels faisant autorité dans notre pays. Rachel Aviv ne condamne pas, elle enregistre, observe, donne ses impressions et montre beaucoup d'empathie pour ces personnes profondément blessées. Ce récit touchant confirme ce que bon nombre de Belges savent déjà : l'expérimentation sociale de l'euthanasie, suite à la loi de 2002, n'est pas le récit à succès auquel certains voudraient nous faire croire.
Advance care planning (ACP) enables individuals to think ahead and define their goals and preferences for future treatment and care. Such a process has been shown to have a positive impact on both the indivdual and those close to them, and is widely considered to be an integral part of best practice long-term care. Implementation in daily nursing home practice however still seems to be a challenge, and research has failed to provide recommendations on how to implement ACP successfully in the complex setting of a nursing home. Effectiveness research has therefore been recommended to go beyond "does it work?" to "how and under what circumtances does it work?".
Towards successfull advance care planning in nursing homes was written as a Joint PhD dissertation and explores how to implement advance care planning successfully in nursing homes. Through the theory-based development and evaluation of a complex intervention, using qualitative and quantitative research methods, this work aims to contribute to improving advance care planning in routine nursing home care in Flanders, Belgium.
CONTEXT: A central approach of palliative care has been to provide holistic care for people who are dying, terminally ill or facing life-limiting illnesses while neither hastening nor postponing death. Assisted dying laws allow eligible individuals to receive medically administered or self-administered medication from a health provider to end their life. The implementation of these laws in a growing number of jurisdictions therefore poses certain challenges for palliative care.
OBJECTIVES: To analyse the research literature about the relationship of assisted dying with palliative care, in countries where it is lawful.
METHODS: A five-stage scoping review process was adapted from the Joanna Briggs Institute. Data sources searched through October 2018 were MEDLINE, CINAHL, PsychINFO, SCOPUS, and ProQuest dissertations and theses, with additional material identified through hand searching. Research studies of any design were included, but editorials or opinion articles were excluded.
RESULTS: After reviewing 5778 references from searches, 105 were subject to full-text review. 16 studies were included: from Belgium (4), Canada (1), Switzerland (2) and the United States (9). We found the relationship between assisted dying and palliative care practices in these locations took varied and sometimes combined forms: supportive, neutral, coexisting, not mutually exclusive, integrated, synergistic, cooperative, collaborative, opposed, ambivalent and conflicted.
CONCLUSION: The studies in this review cast only partial light on challenges faced by palliative care when assisted dying is legal. There is pressing need for more research on the involvement of palliative care in the developing practices of assisted dying, across a growing number of jurisdictions.
This dissertation explores the existing barriers for early integration of palliative home care in oncology care and the differences between early and late involvement of palliative home care. Furthermore, an intervention model for early integration of palliative home care in oncology care is developed following the steps of the Medical Research Council Framework. This model is then tested in a pilot pre post study on its feasibility and wacceptability.
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BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
AIMS AND OBJECTIVES: To explore how Flemish nurses working in hospitals and home care experience their involvement in the care of patients requesting euthanasia 15 years after the legalisation of euthanasia.
BACKGROUND: Euthanasia was legalised in Belgium in 2002. Despite prior research that charted the experiences of nurses in euthanasia care before and right after legalisation in Belgium, it remains unclear how Flemish nurses currently, 15 years after the legalisation, experience their involvement.
DESIGN: A grounded theory design, using semi-structured in-depth interviews.
METHODS: We interviewed 26 nurses working in hospitals or in home care, who had experience with caring for patients requesting euthanasia. Data were collected using a purposive sample and then a snowball sample. Data collection and data analysis were conducted simultaneously. Data were analysed by using the Qualitative Analysis Guide of Leuven. The study adhered to the COREQ guidelines.
RESULTS: Caring for a patient requesting euthanasia continues to be an intense experience characterized by ambivalence. The nature of euthanasia itself contributes to the intensity of this care process. The nurses described euthanasia as something unnatural and planned that generated many questions and doubts. Nevertheless, most interviewees stated that they were able to contribute to a dignified end of life and make a difference, giving them a profound feeling of professional fulfilment. However, when nurses were not able to contribute to good euthanasia care, they struggled with strong negative feelings and frustrations.
CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Although the results suggest some subtle shifts in nurses' experiences over time, they do not indicate perceptions of euthanasia as a normal practice by the nurses involved. Research on the perceptions of nurses who have strong negative experiences or conscientious objections is needed to further clarify nurses' ethical positions on euthanasia care.
Avocat au Barreau de Bruxelles, Bernard Mouffe livre une réflexion sur le droit à la mort, qu'il s'agisse de suicide, d'avortement ou d'euthanasie. Il analyse ce qui rassemble ces trois sujets et ce qui les sous-tend.
Dans le cadre d’une présentation au 8e congrès international du réseau francophone de soins palliatifs pédiatriques à Liège, les auteurs développent une réflexion théorico-clinique sur la fonction du pychologue travaillant auprès d’enfants dont le pronostic vital est menacé. Des entretiens semi-structurés ont été menés auprès des psychologues de liaison de l’Hôpital des Enfants Reine Fabiola à Bruxelles. La réflexion s’articule plus particulièrement autour des difficultés, ressources et besoins des psychologues qui accompagnent les enfants qui risquent de mourir. L’expérience et la formation sont identifiées comme des ressources au même titre que le travail collectif, la solidarité et le lien. Les difficultés concernent certains aspects de la collaboration et de la communication entre soignants. Le cheminement personnel apparaît comme un élément essentiel.
CONTEXT: Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.
OBJECTIVES: This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses.
METHODS: We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators.
RESULTS: Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging).
CONCLUSIONS: Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
BACKGROUND: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice.
OBJECTIVES: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner.
DESIGN: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling.
SETTING AND PARTICIPANTS: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer.
METHODS: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis.
RESULTS: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning.
CONCLUSIONS: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.
Background: Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65–84 years and those 85 years and older who died non-suddenly in three European countries.
Methods: This is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013–2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators.
Results: GPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65–84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP–patient communication (aged 65–84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65–84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)).
Conclusions: Considerable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP–patient communication and multidisciplinary meetings.
L’euthanasie des patients mineurs est autorisée en Belgique depuis 2014. Selon les critères de la loi, le mineur d’âge atteint d’une maladie incurable sévère et dans un état de souffrance physique inapaisable doit faire lui-même la demande d’euthanasie même si un consentement parental est requis. La loi belge ne prévoit pas de limite d’âge mais l’enfant qui demande l’euthanasie doit être capable de discernement. Le débat éthique de l’euthanasie des patients mineurs interroge les principes d’autonomie, de bienfaisance, de non malfaisance et de justice.
L’auteur présente sa réflexion personnelle sur l’euthanasie en Belgique et sur son extension aux enfants. En Belgique, un patient adulte peut demander depuis 2002 et à certaines conditions une assistance médicale au décès dénommée euthanasie. Les personnes mineures peuvent faire une démarche similaire depuis 2014. L’euthanasie ne se résume pas à un acte létal. Elle est la conclusion d’un long processus d’accompagnement et d’écoute du malade. La voix du malade devient prépondérante : la loi a permis au malade de rester le sujet et l’acteur de sa vie, y compris quand celle-ci entre dans sa phase terminale. Elle ouvre un espace de discussion et d’information préalable pour permettre aux deux protagonistes, malade et médecin, de rechercher la piste la meilleure à suivre. En pratique, l’euthanasie est un acte qui est le résultat d’une concertation transparente entre le malade et son médecin partagée avec la famille et l’équipe soignante.
In literature, obituaries from different cultures and languages have been studied on different levels and from different perspectives. One of the popular research topics is the use of metaphors, since metaphors help to cope with death, which in modern society is still a taboo. This article presents a bottom-up, primarily qualitative analysis of the metaphors in 150 obituaries of sportspeople, published in online versions of newspapers/magazines and on the Internet. As expected, the obituaries contain the traditional metaphors of death. Also more original, creative metaphors are introduced to describe death in a euphemistic way. Some of those have a link to sports but not systematically to the sport practiced by the deceased.
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.
Death discourse provides interesting material to determine how societies and cultures cope with death and the sorrow of losing a beloved one. Several aspects can be analyzed: content, language, design, and so on. This article describes a diachronic bottom-up analysis of the metaphorical language in 150 epitaphs from Belgian cemeteries. The analysis allows us to determine whether attitudes toward death and the taboo to talk directly about it have changed. Based on the existing frameworks, 13 recurring metaphors were identified and analyzed. Their occurrences are linked to the period in which they were written and the age and the gender of the deceased. Epitaphs are a stable genre on all levels of analysis. The results indicate that people are still reluctant to talk in a straightforward way about death as metaphors with positive connotations prevail.