La réflexion proposée ici sur la question de la mort dans la fratrie confrontée au handicap et à la maladie, est née de l'articulation de mes recherches cliniques sur la manière dont le handicap ou la maladie peut transformer les liens fraternels, et de ma pratique de psychologue en CAMSP (centre d'action médico-sociale précoce). Il sera question ici non pas d'évoquer la mort réelle d'un frère, mais plutôt d'explorer le fantasme de mort, en partant d'une situation clinique. Un détour par un exposé théorique sur le déploiement de ce fantasme au sein du lien fraternel ordinaire permettra de comprendre ce qui peut se jouer dans les fratries comprenant un enfant en situation de handicap.
Ce chapitre montre que la question de la mort impliquant une personne en situation de handicap pose fondamentalement la question des représentations du handicap et interroge la manière dont on parvient, plus ou moins facilement, à penser le sujet en situation de handicap spécifiquement, et les enfants plus généralement, comme des êtres pensants et appréhendant, à leur manière, la réalité et/ou la perspective de la mort d'un proche et/ou celle de leur propre mort.
[Extrait de l'intro.]
Background: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.
Aim: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.
Design: Descriptive, cross-sectional study.
Setting/participants: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.
Results: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.
Conclusions: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological–hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.
The article explores the underlying reasons for patients' self-perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview-based study of WTD in patients with advanced cancer and non-cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub-analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self-understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.
Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight so desperate that it can only be relieved by the end of the patient's existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient's mind, and the danger of diminishing the worth of one's life out of shame or self-denigration. R. D. Laing's terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient's view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver's view of the patient's stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.
La fin de vie, et plus particulièrement l'euthanasie et le suicide médicalement assisté font l'objet de débats éthiques qui touchent à la fois les domaines politique, médical et juridique. Les auteures livrent leur réflexion sur l'incertitude médicale face aux demandes de morts anticipées. Après avoir décrit l'aspect législatif français sur ces questions et leur méthodologie de recherche, les auteures analysent les modalités et les motifs des demandes d'euthanasie et de suicide médicalement assisté ainsi que les différentes niveaux d'interprétation de ces demandes (désir de mort / souffrance). pour terminer, elles montrent de quelle manière la demande de hâter sa propre mort engage les patients, leurs proches et les médecins dans une temporalité particulière.
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.
PURPOSE: Previous findings have shown that depression in advanced stages of cancer is associated with hopelessness and frequently with wishes for hastened death. The current study tries to investigate the relationship between hopelessness and desire for hastened death and if depression may be a moderator and/or mediator role in patients with advanced cancer.
METHOD: The participants were 102 patients with advanced cancer which they completed the Beck Hopelessness Scale (BHS), the Greek Schedule of Attitudes towards Hastened Death (G-SAHD), and the Greek Beck Depression Inventory (BDI).
RESULTS: Depression was highly correlated with hopelessness and desire for hastened death. Mediation analyses revealed that hopelessness influenced desire for hastened death as well as indirectly by its effect on depression. Similarly, depression was found as moderator in the relationship between hopelessness with desire for hastened death.
CONCLUSIONS: Hopelessness and desire for hastened death in patients with advanced cancer should be diagnosed and treated by taking into consideration the optimum care of depression as a priority in palliative care.
L'article 115 du Code Pénal suisse permet l'assistance au suicide (AS) lorsqu'il n'y a pas de mobile égoîste. Il offre ainsi un "droit-liberté" à chaque citoyen. Bien que la loi ne précise pas le rôle du médecin ni n'exige sa présence, l'Académie Suisse des Sciences Médicales a publié des directives éthiques. La forte augmentation du nombre d'AS depuis 2004 questionne la société et les médecins, en particulier sur leur capacité d'entendre et de dialoguer autour de cette demande en fin de vie. Le soignant se doit d'entendre et d'analyser cet appel, en respectant la volonté de chaque patient.
RESEARCH AIMS: The motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.
STUDY POPULATION: 62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).
STUDY DESIGN AND METHODS: Qualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.
RESULTS: In addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.
INTERPRETATION: WTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients' WTD, and the underlying motivations and protective factors.
Analyse de la pensée de Platon et de Montaigne sur la vie et la mort. L'auteur montre que chez l'idéaliste comme chez le fataliste la mort est désirable car elle délivre du faux. Mais une différence essentielle les oppose : pour Platon, la mort libère la pensée, permettant l'accès à la connaissance éternelle ; pour Montaigne, elle l'étouffe définitivement, délivrant l'homme de ses inquiétudes.
In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on 'completed life in old age' should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.
Résumé du symposium sur l’« Aide à mourir pour les seniors sans maladie grave », d’après les communications de V. Fournier, Centre d’éthique clinique, AP-HP et Centre national des soins palliatifs et de la fin de vie France ; J. Bernheim, Vrije Universiteit de Bruxelles, Belgique ; R. Jox, chaire de soins palliatifs gériatriques, CHUV, Lausanne, Suisse.
La société doit voir ou revoir la manière dont elle souhaite accompagner jusqu’au décès les personnes, malades ou non. Ce symposium a abordé la situation particulière de l’aide à mourir pour les personnes âgées, en particulier celles qui ne souffrent pas de maladie grave terminale, mais qui souhaitent mourir par lassitude de la vie. Tour de table de médecins spécialisés en éthique en France, en Belgique et en Suisse...
BACKGROUND: Medical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues.
METHODS: A retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests.
RESULTS: Of 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient's death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions.
INTERPRETATION: We highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians' approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.
L’aide médicale à mourir semble être devenue une convention sociale à laquelle on adhère afin d’éviter le plus possible la douleur, le sentiment d’être une charge ou une solitude accrue. Mais que signifie la volonté de devancer «l'heure» dans le contexte social actuel?
Cet essai prend la forme d’un dialogue entre un médecin des soins palliatifs depuis trois décennies et une anthropologue pionnière de l’étude des rapports humains face à la mort. À partir de 40 mots-clés, il offre des facettes souvent inaperçues, voire taboues, des réalités de la maladie, du soin et du lien social présentes lorsque la mort se profile à l'horizon. Il cherche à discerner les besoins psychiques et socioculturels à l'origine de la demande d'une devancée, ainsi replacée au sein des transformations contemporaines de notre rapport à la mort.
En éclairant tant les mouvements culturels que l'anticipation du deuil des individus, une question traverse ainsi ce livre : le souhait d'accélérer le tempo vers la mort serait-il aussi une de nos manières actuelles de ruser avec le destin?
Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body.
OBJECTIVE: To test a model in which perceived loss of dignity and control are proposed, along with symptoms of depression and functional impairment, as risk factors for the wish to hasten death (WTHD) in advanced cancer patients.
METHODS: This was a cross-sectional study of 193 patients in an oncology unit. Outcome measures included perceived control, performance status, symptoms of depression, perceived dignity, and the WTHD. Structural equation modeling was performed.
RESULTS: Structural equation modeling showed that perceived loss of control (-.402) and functional impairment (-.21) were risk factors for perceived loss of dignity. Loss of control (-.385) and functional impairment (-.283) were also risk factors for symptoms of depression. Perceived loss of dignity and symptoms of depression were the most proximal determinants of the WTHD, on which they had a direct, positive, and significant effect (.246 and.209, respectively). Therefore, both symptoms of depression and perceived loss of dignity independently predicted the WTHD and mediated the effects of perceived loss of control and functional impairment on this wish.
CONCLUSIONS: The hypothesized model provides evidence for the impact of the four aforementioned factors on the WTHD. Our results suggest that personalized care plans which are able to enhance the sense of dignity and control among advanced cancer patients could help to reduce the likelihood or intensity of a WTHD.