Le 24 juillet 2002 restera à jamais gravé dans la tête et le cour de Sylvie Bernier. Ce jour-là, son neveu Raphaël, cinq ans, s'est noyé sous ses yeux lors d'une randonnée en canot jusque-là très paisible sur la rivière Nouvelle, en Gaspésie. Un remous a fait chavirer l'embarcation dans laquelle prenait place l'enfant. Le petit Raphaël est resté coincé sous un embâcle. Cruelle ironie du sort : la plongeuse la plus célèbre du Québec, Sylvie Bernier, n'a pu le secourir.
La championne olympique a longtemps porté en elle ce deuil terrible, oscillant entre la tristesse et colère. Elle était habitée par surcroît par la culpabilité de ne pas avoir plongé pour tenter de dégager son neveu, même si le rapport du coroner confirme qu'elle serait morte aussi si elle l'avait fait, avalée à son tour par ce vortex. Dans ce récit bouleversant, Sylvie Bernier raconte comment elle a surmonté cette épreuve, depuis le chemin de Compostelle, étape essentielle de sa « guérison », jusqu'à son engagement à titre d'ambassadrice de « Nager pour survivre », de la Société de sauvetage, un programme destiné à apprendre aux enfants les habiletés nécessaires pour survivre à une chute en eau profonde.
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.
L’article est une approche anthropologique de la mort à l’hôpital. L’analyse s’appuie sur la littérature produite sur ce sujet, sur les enquêtes menées par les deux auteures, en France et ailleurs (Madagascar et Maroc) et sur la consultation de médecine transculturelle qu’elles animent au CHU de Bordeaux. La mort et son sens y sont examinés à travers l’histoire en Occident et par des exemples de médicalisation dans d’autres contextes. Les rituels funéraires s’avèrent indispensables dans certaines cultures pour le devenir du mort et la paix des vivants. En Occident, les rituels se sont amenuisés, et la médicalisation, l’individualisme, la marginalisation des croyances religieuses, font que le sens de la mort s’est modifié. La culture de fin de vie qui est mise en œuvre dans les hôpitaux est pensée pour que la personne puisse donner un sens à sa vie et non pour la préparer à un au-delà. Des exemples sont pris dans différents services du CHU de Bordeaux. Les équipes inventent collectivement des gestes, des accompagnements par les paroles, pour que la fin de vie soit la plus apaisée. En effet, le risque le plus grave à l’hôpital est de mourir seul, condition infâme et violente que redoutent tous, patients, familles et soignants.
Cet article montre que le processus d’individualisation de la fin de vie ne peut être dissocié de l’émergence récente de nouvelles formes de socialisation à la mort et au mourir. Si l’individu contemporain s’est affranchi des liens traditionnels, il doit davantage se plier aux contraintes de nouvelles instances ou institutions (hôpital, profession médicale, associations, entreprises de pompes funèbres...) qui jouent désormais un rôle essentiel. Il peut redéfinir, aménager, personnaliser dans une certaine mesure, les modalités de sa prise en charge mais ces instances occupent aujourd’hui une place centrale, comme en témoignent le développement des soins palliatifs, les dispositifs de soutien aux endeuillés, la préparation de ses propres obsèques, ou encore les démarches d’adhésion à l’euthanasie. On propose, dans ce qui suit, de s’interroger sur la diversité des formes de socialisation qui conditionnent ou orientent l’expérience individuelle et sociale du mourir.
Les soins palliatifs et l’accompagnement des mourants s’inscrivent dans le mouvement plus large d’individualisation de la mort. Centrée sur la notion d’autonomie, la mort idéale se veut aujourd’hui discrète, inconsciente et hygiénique. Impensable sans une importante expertise médicale qui permet de soulager la douleur physique, de contrôler chimiquement l’angoisse et la peur, de neutraliser les odeurs et les traces de l’agonie, cet idéal suppose une tension constante entre contrôle et dépendance. Emblématique de ce que le sociologue Nikolas Rose nomme la biocitoyenneté, soit une forme de citoyenneté centrée sur une politisation de la santé individuelle et sur l’émergence de revendications identitaires reliées à des questions d’ordre biomédical, le mouvement en faveur des soins palliatifs s’inscrit en fait dans le processus global de pharmaceuticalisation caractérisant les sociétés occidentales contemporaines. Partant d’un questionnement sociologique sur l’usage croissant de la sédation profonde dans la gestion biomédicale de la fin de vie, cet article propose d’analyser le phénomène du contrôle médicamenteux de la souffrance sous l’angle de la pharmaceuticalisation. Au-delà de la thèse du déni de la mort et du refus de la douleur, il s’agira plutôt de comprendre que la sédation profonde est indissociable d’une volonté de contrôle et d’optimisation de soi propre à la biocitoyenneté. Loin d’un simple refus de la douleur, la norme de la sédation profonde indique plutôt que la douleur « improductive », c’est-à-dire celle qui ne s’inscrit pas dans une logique thérapeutique, méliorative ou expérimentale, tant à devenir socialement intolérable. La sédation profonde apparaît ainsi à la fois comme la limite et l’expression ultime de la biocitoyenneté.
Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.
It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
This study investigates medical trainees' experiences with dying and death, by means of semistructured interviews. Nine medical students and nine residents reported a total of 114 experiences. The great majority of these experiences took place during the final year of medical school. The authors identified the latent characteristics, which illustrate an in-depth understanding of the significance of the described experiences. Three main themes emerged: circumstances of death, personal relationship, and one's own role. The age of the dying person, the extent of suffering, time frame and setting, and the patients' behaviors were factors that influence the perceptions of the experiences. The interviewees reported powerful emotional consternation by the patients' deaths with whom they had developed a close relationship. Failure, helplessness, and guilt were negatively associated perceptions of one's own role. This study illustrates the tension between emotional concern and professional detachment. It highlights the continuing existence of a physician image, in which control represents the key issue.
BACKGROUND: Most people in the United States and other countries cite their preferred location of death as their homes. However, intractable symptoms sometimes require hospitalization, especially if significant sedation becomes necessary. For over a decade, Hospice of Central New York has been using compounded phenobarbital suppositories with individuals in whom adequate sedation has not been achieved using sufficient doses of antipsychotics or benzodiazepines but prefer to remain in their homes.
OBJECTIVES: (1) Describe the use of phenobarbital suppositories in homes for the purpose of sedation. (2) Understand patient characteristics of potential users and those in whom suppositories were actually used. (3) Measure time to death after initiating the phenobarbital suppositories.
SETTING: Medicare-certified not-for-profit hospice organization in New York State.
METHOD:: Retrospective case series.
RESULTS: Of 1675 patients enrolled in hospice over an 18-month period, phenobarbital suppositories were placed in the homes of 90 patients for potential use. Suppositories were initiated in 31 of the 90 patients. Agitated delirium was the major symptom for which suppositories were placed and initiated. Both groups had a greater prevalence of cancer diagnoses than the target population. The mean time to death after initiation of phenobarbital suppositories was 38.8 hours. None of the users were hospitalized.
CONCLUSION: The use of compounded phenobarbital suppositories for the purpose of palliative sedation is an alternative for patients and families who desire to remain home despite refractory symptoms.
In 2012, we published a study in this journal exploring the emergence of unique skin changes in end-of-life patients admitted to a palliative care unit. The purpose of the study was to describe the skin changes and identify the relationship between these changes and time of death. In the above study of 80 patients, the skin changes were found to be unique and different from Kennedy terminal ulcers and deep tissue injuries. Median time from identification of skin changes and death was 36 hours. The phenomenon was named as Trombley-Brennan terminal tissue injury. The current article presents findings that include the study of additional 86 patients. The results further validate the phenomenon and its relationship with time of death.
PURPOSE: Family meetings in the medical intensive care unit can improve outcomes. Little is known about when meetings occur in practice. We aimed to determine the time from admission to family meetings in the medical intensive care unit and assess the relationship of meetings with mortality.
METHODS: We performed a prospective cohort study of critically ill adult patients admitted to the medical intensive care unit at an urban academic medical center. Using manual chart review, the primary outcome was any attempt at holding a family meeting within 72 hours of admission. Competing risk models estimated the time from admission to family meeting and to patient death or discharge.
RESULTS: Of the 131 patients who met inclusion criteria in the 12-month study period, the median time from admission to family meeting was 4 days. Fewer than half of patients had a documented family meeting within 72 hours of admission (n = 60/131, 46%), with substantial interphysician variability in meeting rates ranging from 28% to 63%. Patients with family meetings within 72 hours were 30 times more likely to die within 72 hours (32% vs 1%, P < .001). Of the 55 patients who died in the intensive care unit, 27 (49%) had their first family meeting within 1 day of death.
CONCLUSIONS: Family meetings occur considerably later than 72 hours and are often held in close proximity to a patient's death. This suggests for some physicians, family meetings may primarily be used to negotiate withdrawal of life support rather than to support the patient and family.
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions.
METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance.
DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice.
OBJECTIVE: The aim of this study was to describe preferences for a good death among Chinese patients with advanced cancer and then to explore factors contributing to their preferences including patient demographics and disease variables.
METHODS: A convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. A Chinese version of the Good Death Inventory (GDI) was used to measure patients' preferences for dying and death. Besides, data were collected using a multi-itemed questionnaire focusing on demographic and disease characteristics of patients.
RESULTS: Of the 275 questionnaires returned, 248 responses were analysed (effective response rate 90.2%). According to the total scores for each of the 20 domains, the five most important domains of a good death were: good relationship with family (19.80±2.39), independence (19.66±2.56), maintaining hope and pleasure (19.56±2.55), good relationship with medical staff (18.92±3.73), not being a burden to others (18.89±3.30). Patients' characteristics including age, educational status, religious belief, medical payment types, family economic status, past experiences of the death of others, the period since cancer diagnosis, past experiences of hospitalisation and subjective physical condition influenced their preferences for a good death (all p<0.05).
CONCLUSIONS: We had an in-depth knowledge and understanding of their preferences for good death among Chinese patients with advanced cancer. Meanwhile, we found some patients' factors contributed to different preferences for a good death. These findings have the potential to guide hospice care services aimed at achieving a good death for patients with advanced cancer.
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the influence of sibling loss during childhood on psychiatric care in young adulthood, adjusting for psychosocial covariates shared by siblings in childhood. A national cohort born in Sweden in 1973-1982 (N = 701,270) was followed prospectively until 2013. Cox proportional hazards models were used to analyse the association between sibling loss during childhood and psychiatric inpatient and outpatient care identified by the Hospital Discharge Register. After adjustment for confounders, the HRs of psychiatric care in men who experienced sibling loss were 1.17 (95% CI 1.07-1.27) while the associations turned non-significant in women after adjustment for family-related psychosocial covariates, HR 1.07 (95% CI 0.99-1.16). An increased risk was found in men bereaved in early childhood (1.22 95% CI 1.07-1.38) and adolescence (1.27 95% CI 1.08-1.48). Among women, loss of a sibling during adolescence was significantly associated with psychiatric care (1.19 95% CI 1.03-1.36). Increased psychiatric health problems following bereavement could underlie the previously found association between sibling loss and mortality from external causes. Family-related psychosocial conditions shared by siblings in childhood may account for the association between sibling death and psychiatric care in adulthood.
Death or prolonged disorders of consciousness (DOC) of a loved one are both considered relational-losses that severely disrupt attachment-bonds. Grief in both conditions was compared by exploring the impact of familial-role and attachment-orientation. In DOC, caregivers’ grief was found significantly intensified relative to Death. Familial-role impacted grief in both conditions alike, with partners' heightened grief in DOC reflecting the complexity of their stagnant bonds. In Death, avoidance-attachment mitigated grief, while in DOC anxiety-attachment accentuated grief, we suggest that while physical-separation in death facilitates the modification of continuing attachment-schema, in DOC, modification may be required while the patient is still alive.
In 2011, the Veterans Health Administration mandated that Veterans Affairs (VA) Medical Centers develop and implement a policy that allowed registered nurses (RNs) and advanced practice registered nurses (APRNs) to pronounce the death of residents who die in Veterans Affairs community living centers, previously known as nursing homes, provided that there is a written do-not-resuscitate order in their medical record. The purpose of this quality improvement project was to determine the extent to which the implementation of the RN/APRN death pronouncement policy affected death pronouncement time for residents who die after 5 PM and before 7:30 AM, on weekends and holidays. This project is significant because the previous physician-only death pronouncement policy was found to cause unnecessary delays in death pronouncement. A chart review of the medical records of all veterans' deaths pronounced by physicians 3 years before the implementation of the policy and 4 years after the RN/APRN policy was reviewed and implemented. The data analysis was conducted using descriptive analysis. A significant difference was found in the results (P < .05). The maximum for prepolicy deaths was 125 minutes. The maximum for postpolicy deaths was 7 minutes. The results supported the assumption that RN/APRN pronounced death without delay.
While people are still alive, we owe them respect. Yet what, if anything, do we owe the newly dead? This question is an urgent practical concern for aged societies, because older people die at higher rates than any other age group. One novel way in which Japan, the frontrunner of aged societies, meets its need to accommodate high numbers of newly dead is itai hoteru or corpse hotels. Itai hoteru offer families a way to wait for space in over-crowded crematoriums while affording an environment conducive to grieving. Drawing on conversations with itai hoteru employees, we delineate the values this contemporary death practice expresses and show how these values comprise part of the broader idea of a good death. A good death implies duties on both sides of death's divide: to both the dying and the newly dead.
Humans were once considered unique in having a concept of death but a growing number of observations of animal responses to dying and dead conspecifics suggests otherwise. Complex arrays of behaviors have been described ranging from corpse removal and burial among social insects to quiet attendance and caregiving among elephants and primates. Less frequently described, however, are behavioral responses of individuals from different age/sex classes or social position toward the death of conspecifics. We describe behavioral responses of mountain gorillas (Gorilla beringei beringei) to the deaths of a dominant silverback and a dominant adult female from the same social group in Volcanoes National Park in Rwanda and the responses of Grauer's gorillas (Gorilla b. graueri) to the corpse of an extra-group silverback in Kahuzi-Biega National Park, Democratic Republic of Congo. In gorillas, interactions between groups or with a lone silverback often result in avoidance or aggression. We predicted that: (i) more individuals should interact with the corpses of same-group members than with the corpse of the extra-group silverback; (ii) adult females with infants should avoid the corpse of the extra-group silverback; and (iii) in the mountain gorilla cases, individuals that shared close social relationships with the dead individual should spend more time with the corpse than other individuals in the group. We used a combination of detailed qualitative reports, photos, and videos to describe all occurrences of affiliative/investigative and agonistic behaviors observed at the corpses. We observed similar responses toward the corpses of group and extra-group individuals. Animals in all three cases showed a variety of affiliative/investigative and agonistic behaviors directed to the corpses. Animals of all age/sex classes interacted with the corpses in affiliative/investigative ways but there was a notable absence of all adult females at the corpse of the extra-group silverback. In all three cases, we observed only silverbacks and blackbacks being agonistic around and/or toward the corpses. In the mountain gorilla cases, the individuals who spent the most time with the corpses were animals who shared close social relationships with the deceased. We emphasize the similarity in the behavioral responses around the corpses of group and extra-group individuals, and suggest that the behavioral responses were influenced in part by close social relationships between the deceased and certain group members and by a general curiosity about death. We further discuss the implications close interactions with corpses have for disease transmission within and between gorilla social groups.
This paper reports the impact of a major life event-death-on the physical, psychological and social well-being of the deceased's close friends. We utilised data from a large longitudinal survey covering a period of 14 years (2002-2015) consisting a cohort of 26,515 individuals in Australia, of whom 9,586 had experienced the death of at least one close friend. This longitudinal cohort dataset comprises responses to the SF-36 (health related quality of life measure) and allowed for analysis of the short and longer-term impacts of bereavement. In order to manage the heterogeneity of the socio-demographics of respondents who did/not experience a death event, we use a new and robust approach known as the Entropy Balancing method to construct a set of weights applied to the bereaved group and the control group (the group that did not experience death). This approach enables us to match the two groups so that the distribution of socio-demographic variables between the two groups are balanced. These variables included gender, age, marital status, ethnicity, personality traits, religion, relative socio-economic disadvantage, economic resources, and education and occupation and where they resided. The data show, for the first time, a range of negative and enduring consequences experienced by people following the death of a close friend. Significant adverse physical and psychological well-being, poorer mental health and social functioning occur up to four years following bereavement. Bereaved females experienced a sharper fall in vitality, suffered greater deterioration in mental health, impaired emotional and social functioning than the male counterparts up to four years after the death. The data show that the level of social connectedness plays an important role in bereavement outcomes. Specifically, we found that less socially active respondents experienced a longer deterioration in physical and psychological health. Finally, we found evidence that the death of a close friend lowered the respondent's satisfaction with their health. Since death of friends is a universal phenomenon, we conclude the paper by reflecting on the need to recognise the death of a close friend as a substantial experience, and to offer support and services to address this disenfranchised grief. Recognising bereaved friends as a group experiencing adverse outcomes can be used internationally to prompt health and psychological services to assist this specific group, noting that there may be substantial longevity to the negative sequelae of the death of a friend. Facilitating bereaved people's support networks may be a fruitful approach to minimising these negative outcomes.