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.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
It is not easy to characterize a problem patient or bereaved relatives because identifying a patient or his bereaved family as a problem; is not considered quite ethical. The approached emergency medical service employees and coroner service physicians were asked to complete a specific targeted anonymous survey. 100 % of survey questionnaires were returned. The questionnaire with a request for filling and returning was submitted to forty employees working full-time, twenty of whom were physicians, ten paramedics and ten lower-level healthcare professionals. The questionnaire comprised ten questions aimed at obtaining clear answers to questions about personal experience with problem patients, specifically aggressive patients, and more specifically whether the health care professionals (HCP) has ever felt immediately threatened by a patient in their work, whether they were exposed to verbal or even physical attack in the context of the patients basic diagnosis established during pre-hospital care. Seventy-five percent of respondents answered Yes to Question No. 5: Have you ever felt threatened by a patient or bereaved relative in your work? ; Eighty percent of respondents answered Yes to Question No. 6: Have you ever been exposed to a verbal attack by a patient or bereaved relative? Seventy-five percent of them answered Yes to Question No. 7: Have you ever been exposed to a physical attack by a patient? The rate of cases in which emergency medical service employees are exposed to verbal or physical attacks is high. The primary experience hypothesis that this happens has been proven as well as the fact that it is a highly topical and therefore unresolved issue that threatens the whole society with its social implications.
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.
The sudden and unexpected nature of fatal work incidents can leave family members with a strong need to know how and why the worker died. Forty Australian family members were interviewed to identify the information sought following fatal work incidents and explore the factors enhancing or impairing satisfaction with the account of the death. Findings demonstrated that employers tended to divert responsibility to the worker, to mask underlying systemic failures. Satisfaction was enhanced if family members believed a sense of justice was attained and formal investigations were able to expose the truth and those responsible for the death were identified.
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.
Chinese family caregivers of dementia patients suffer considerable grief in their caregiving activity; little research has been conducted on dementia caregivers' grief in China. This study aims to (a) confirm the factor structure of the Mandarin version of the Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), (b) evaluate the levels of family caregivers' grief, and (c) explore the best predictors of family caregivers' grief. A cross-sectional study was conducted to collect data from 91 caregivers of dementia patients. The Mandarin version of the MM-CGI-SF had a three-factor structure. Family caregivers' grief was at an average level. Family caregivers' monthly household income and caring time per day predicted their own grief. The Mandarin version of the MM-CGI-SF possessed the same factor structure as the original English version, and the Chinese family caregivers experienced an average grief which was predicted by the monthly household income and caring time per day of the caregivers.
Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child in hospice/palliative care. Results of past studies demonstrated this Strengths Guide (SG) interview to be an intervention bringing a heightened realization of the importance and utilization of one's inner strengths. The purpose of this study was to assess the long-term impact of this SG with a population of parents who participated in a previous study using the SG. This descriptive study was conducted using a quantitative tool, the Personal Strength Rating Scale, comparing the post-SG interview results with those results obtained 3 years later. Participants in this study were parents caring for a child receiving palliative/hospice care at home in Kenya. Results revealed the long-term retention of strengths following the SG interview 3 years previously was, for most sources of strength, equal to or greater than those obtained immediately following the SG.
BACKGROUND: Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point for further empirical and ethical inquiry.
METHODS: A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies.
RESULTS: Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons (not) to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families' experiences and grief after EAS. 4) Family and 'the good euthanasia death' according to Dutch physicians.
CONCLUSION: Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making.
Access to hospice care is widely provided in Western countries, but the supply of such service is still in its initiative stage in China. As relatives are often involved in end-of-life decision making in China, a better understanding of their cognitions toward hospice care would help policy makers and physicians to overcome the barriers of providing such service. Thus, we conducted the study to assess the level of knowledge and attitudes among Chinese outpatients and family members regarding hospice care.A cross-sectional study was conducted in Peking University Third Hospital and Peking University Shougang Hospital. Trained interviewers recruited outpatients or family members in two hospitals as a convenience sample to complete an anonymous face-to-face survey on demographic information, knowledge, and attitudes regarding hospice care.A total of 550 respondents completed this survey. Only 107 (19.5%) reported that they had known or heard of hospice care, with a mean knowledge score of 2.8 (standard deviation = 1.6). Of the respondents, 69.5% answered "strongly agree" or "agree" regarding the importance of providing hospice care in China. Participants who had known of hospice care were more likely to have favorite attitudes toward it.The awareness rate of hospice care is low in the study, which may lead to poor attitude and low enrollment rate. Considering the increasing evidence to support the improved outcomes of patients and family members associated with hospice care, the public education on its scope of services, benefits, and limitations is needed in China.
The patient who enters at the intensive care unit (ICU) usually does because of health conditions that are sometimes irreversible and lead to death, and the care at the end of life becomes the main factor of this situation; therefore, the aim of this article was to understand the meaning of the experience of giving care to families at the end of life in an ICU. For this reason, a qualitative, hermeneutic phenomenological research was carried out. For the data collection, a semi-structured interview was conducted to 18 participants, and the results were returned to each of the participants in order to validate each of the categories and interpretations. Among these results, two main categories were identified: emotional response of the nurse to the family and nursing care to the family of patients at the end of life. It was concluded that the nurses working at the ICU are facing aspects related to the end of life that generates emotional and psychological burden; additionally, they do not have specific training in this subject, especially in relation to the care of the families in this situation, for which they provide this care based on empiricism.
CONTEXT: Amyotrophic lateral sclerosis (ALS) is an all-encompassing, life-limiting disease, resulting in the eventual paralysis of all voluntary muscles and concurrent loss of independence. As the disease advances, both patients and their family caregivers develop complex biological, psychological, and social needs, leading to increasing calls for the involvement of palliative care teams in the management of ALS.
OBJECTIVE: The purpose of this study was to generate a rich description of the realities of living with ALS, equipping palliative care teams with an in-depth understanding of the experiences and needs of patients with ALS and their family caregivers.
METHODS: This study employed a mixed-methods design, with quantitative data supplementing a larger body of qualitative data. Semi-structured interviews with 42 key stakeholders, including patients, family caregivers, and health-care providers, were analyzed for themes essential for effective understanding of ALS.
RESULTS: Identified themes were organized into 2 broad categories: (1) biopsychosocial needs of patients with ALS and family caregivers and (2) the impact of ALS on spiritual and emotional well-being. Quantitative data supported the recognized themes, particularly with regard to challenges associated with preserving independence, securing sufficient social support, and managing the emotional complexities of the disease.
CONCLUSION: Study findings illustrate the intricacies of living with ALS and the importance of eliciting individualized values when caring for patients with ALS and their families. The complex biopsychosocial needs experienced by patients and family caregivers suggest numerous opportunities for meaningful palliative care involvement.
The aim of this study was to explicate ways in which parents tell their adolescents about a parent's death. This study used a descriptive, qualitative design. From a large hospice in northeastern Ohio, nine adolescent children and six surviving spouses of recently deceased hospice patients were recruited. Participants completed a demographic questionnaire and a semistructured individual interview. Thematic content analysis techniques were used to analyze the data. Surviving parents tell adolescents about the parent's death in ways that are intended to inform and ease the adolescents' distress. They engage in the process of disclosure in one of three ways: measured telling, matter-of-fact telling, and inconsistent telling. Findings from the current study are consistent with the ways parents told their children about an ill parent's life-threatening illness and imminent death. The findings support a framework that describes the processes of disclosure of a parent's illness, imminent death, and death to their adolescent children. Predeath findings about telling foreshadowed the postdeath findings. These results can be used to inform the development of interventions in which nurses and other health care professionals assist families with disclosure before and after death by tailoring strategies according to the family's communication style.
La décision médicale d’un prélèvement d’organes est un acte que la loi tend à réduire et à soumettre à une simple logique juridique. La complexité et l’extrême sensibilité des principes, valeurs et sentiments humains en jeu ne s’accommodent pas de cette simplification. Le processus décisionnel fait intervenir plusieurs parties et respecte la temporalité des familles.
PURPOSE: Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.
METHODS: Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.
RESULTS: Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.
CONCLUSIONS: This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.