Perdre un proche marque une rupture dans nos vies. Cette rupture interagit avec un collectif, les lieux où nous vivons ou encore les structures sociales et politiques qui norment nos existences. Face à l'apparente solitude du deuil, la mort de l’autre interroge notre identité en tant qu’êtres fondamentalement relationnels. Traverser un deuil, c’est se retrouver confronté à la violence et au non-sens de la perte sur lesquels aucun mot, de prime abord, ne peut être posé. C’est pourtant à partir de cet indicible et incommunicable du deuil que peut émerger la question du sens et d’un rapport à soi, aux autres et au monde redéfini par la perte.
Dans la continuité de l’expérience, les savoirs et les discours sur le deuil et la perte influencent nos représentations de la mort et de l’accompagnement de la fin de vie. Ils interrogent plus largement le lien social : en quoi la réflexion sur le deuil nous engage en tant que citoyen.ne ? L’expression « faire son deuil » est alors à questionner : loin d’un impératif, il est question d’ouvrir des pistes de réflexion autour de la créativité humaine – parfois inattendue – face à l’expérience de souffrance et de rupture que constitue la mort de l’autre.
Lila, 25 ans, jeune interne en neurochirurgie à l'hôpital Bichat, découvre les circonstances du décès de sa mère Marianne lorsqu'elle était adolescente. Presque dix ans ont passé et la jeune fille commence enfin son deuil. Le temps d'un été, elle part à la rencontre de sa famille, se faire raconter Marianne.
Inspirée de sa propre histoire, l'auteure, étudiante infirmière à l'IFSI des Diaconesses de Reuilly, raconte l'histoire de Gaëlle qui va accompagner jusqu'à la fin son père, atteint de cancer, qu'elle retrouve à peine. Elle relate les sentiments qui traversent Gaëlle dans cette épreuve.
L'auteure a perdu son conjoint, Didier, emporté par une leucémie en 2016. Elle reste seule avec Gabin, leur fils de 3 ans, à qui elle écrit pour raconter ce père disparu à travers l'inventaire des souvenirs. Elle confie la douleur, la colère et les angoisses qui jalonnent son cheminement émotionnel vers la reconstruction. Elle évoque son rapport à la vie et souhaite redéfinir le statut des veuves.
Adaptant son podcast consacré à la mort, l'auteure brise les tabous autour de la mort, du deuil et des rites funéraires en revenant sur les croyances, les peurs et les fantasmes qui les entourent, dans le monde et à travers l'histoire.
Ce roman se présente comme une lettre d'adieu pour un chat aimé et disparu à travers laquelle l'auteur évoque les mystères de la vie, l'amour et la douleur de la perte. C'est une réflexion sur la fin inéluctable et la mort qui donne sens à la vie, doublée d'une invitation à jouir du présent.
The loss of a loved one causes the world and the place of the bereaved survivor in it to change irreversibly. A key aspect of the grieving process is the integration of the loss in the bereaved survivor’s life story, identity change, and a new future orientation through meaning attribution. Meaning attribution can have favourable or unfavourable effects on the grieving process and hence determines the extent to which a loss disrupts the bereaved survivor’s functioning. A framework of meaning attribution after loss is presented, comprising 17 determinants that fall into five categories: event-related, cultural, social, individual and relational determinants. Each determinant may lead to both positive and negative meanings, thereby facilitating or complicating the grieving process. The framework of meaning attribution highlights the importance of an integrated network for mental health care, spiritual care, and end-of-life care in the prevention and treatment of traumatic grief. It also emphasizes the support from relatives, collective rituals, cultural views, legal settlements, and other societal factors that may foster or impede adaptation to loss. The framework of meaning attribution informs research across a range of research themes, including specialist care for traumatic grief, a culturally sensitive care network for traumatic grief, and improving care for ambiguous loss in a global context.
The following self-analysis contains key experiences of maternal grief over the course of the first 2 years following the death of a child, with specific examples and observations from bereaved mothers shared with the author. The references provide supporting evidence for commonality of the lived experience and observations. Therapeutic responses for clinicians give concrete direction for providing effective comfort. Self-care suggestions for mothers provide specific guidance for the readers. A 14-year retrospective epilogue puts the charged emotional description into a context of healing.
Si le deuil compliqué est aujourd’hui une entité clinique reconnue chez l’adulte, il reste encore particulièrement difficile à appréhender chez l’enfant, tout comme le sont les autres complications du deuil. Dans le présent article, nous rappelons d’abord la spécificité du deuil chez l’enfant. Puis, nous évoquons ce qu’il en est des complications du deuil infantile. Et finalement, nous abordons les perspectives de prises en charge possibles de ces enfants et de leurs proches dans ces contextes si spécifiques de deuil compliqué.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Une « bonne mort », un deuil serein, cela existe, mais la recherche en parle bien peu. En fait, ce sont les trajectoires difficiles et les embuches sous-jacentes qui font surtout l’objet des études, avec raison d’ailleurs puisque l’objectif relève souvent de la volonté d’offrir aux personnes endeuillées un accompagnement qui réponde à leurs besoins.
Paramedics play an essential and distinct role as providers of care to the dying, deceased and bereaved in Aotearoa, New Zealand and around the world. In this paper, we highlight what is known about the features, barriers and facilitators of quality end-of-life care by emergency ambulance personnel. We also identify priorities for future policy and practice, education and research in this area. Paramedics provide urgent and after-hours support to those with known life-limiting illness and their caregivers, but also attend sudden deaths, from unexpected or unknown causes. Paramedic care at the end of life may involve attempted resuscitation; challenging decision-making and communication; symptom relief; recognition of irreversible dying; provision of compassionate, culturally responsive support for co-responders, bystanders and the bereaved. There is an insufficient acknowledgement of the critical and unique role of paramedics, as providers of urgent care to the dying deceased and bereaved. Ambulance personnel around the world want better preparation and support for end-of-life care. Future research should aim to evaluate and improve this vital care, explore the needs and experiences of those who call an ambulance in the context of death, dying or bereavement and address equity and cultural responsiveness.
A palliative approach to care focuses on what matters most to patients with life-limiting illness, including chronic kidney disease (CKD). Despite recent publication of related clinical practice guidelines in nephrology, there is limited information about how to practically implement these recommendations. In this Perspective, we describe our experience integrating a palliative approach within routine care of patients with CKD G4-G5 across a provincial kidney care network over the past 15 years. The effort was led by a multidisciplinary group, tasked with building capacity and developing tools and resources for practical integration within a provincial network structure. We used an evidence-based framework that includes recommendations for four pillars of palliative care to guide our work: 1) patient identification, 2) advance care planning, 3) symptom assessment & management, and 4) caring of the dying patient & bereavement. Activities within each pillar have been iteratively implemented across all kidney care programs using existing committees and organizational structures. Key quality indicators were used to guide strategic planning and improvement. We supported culture change through use of multiple strategies simultaneously. Altogether, we established and integrated palliative care activities into routine CKD G4-G5 care, across the continuum from non-dialysis to dialysis populations.
PURPOSE: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era.
PRIMARY PRACTICE SETTING(S): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care.
FINDINGS/CONCLUSIONS: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered.
IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: .
A patient's death can pose significant stress on the family and the treating anaesthetist. Anaesthetists' attitudes about the benefits of and barriers to attending a patient's funeral are unknown. Therefore, we performed a prospective, cross-sectional study to ascertain the frequency of anaesthetists' attendance at a patient's funeral and their perceptions about the benefits and barriers. The primary aim was to investigate the attitudes of anaesthetists towards attending the funeral of a patient. The secondary aims were to examine the perceived benefits of and barriers to attending the funeral and to explore the rate of bonds being formed between anaesthetists, patients and families. Of the 424 anaesthetists who completed the survey (response rate 21.2%), 25 (5.9%) had attended a patient's funeral. Of the participants, 364 (85.9%) rarely formed special bonds with patients or their families; 233 (55%) believed that forming a special bond would increase the likelihood of their attendance. Showing respect to patients or their families was the most commonly perceived benefit of attending a funeral. Participants found expression of personal grief and caring for the patient at the end-of-life and beyond beneficial to themselves and the family. Fear of their attendance being misinterpreted or perceived as not warranted by the family as well as time restraints were barriers for their attendance. Most anaesthetists had never attended a patient's funeral. Few anaesthetists form close relationships with patients or their families. Respect, expression of grief and caring beyond life were perceived benefits of attendance. Families misinterpreting the purpose of attendance or not expecting their attendance and time restraints were commonly perceived barriers.
Trial registration: ACTRN 12618000503224.
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions.
Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency.
Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals.
Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
BACKGROUND: A recent randomized trial of bereaved family members of patients who died in an intensive care unit identified symptoms of depression and posttraumatic stress in recipients of semistructured condolence letters.
OBJECTIVES: To explore family member and clinician experiences with receiving or sending handwritten sympathy cards upon the death of patients involved in a personalized end-of-life intervention, the 3 Wishes Project.
METHODS: Interviews and focus groups were held with 171 family members and 222 clinicians at 4 centers to discuss their experiences with the 3 Wishes Project. Interview transcripts were searched to identify participants who discussed sympathy cards. Data related to sympathy cards were independently coded by 2 investigators through conventional content analysis.
RESULTS: Sympathy cards were discussed during 32 interviews (by 25 family members of 21 patients and by 11 clinicians) and 2 focus groups (8 other clinicians). Family members reported that personalized sympathy cards were a welcome surprise; they experienced them as a heartfelt act of compassion. Clinicians viewed cards as an opportunity to express shared humanity with families, reminding them that they and their loved one were not forgotten. Signing cards allowed clinicians to reminisce individually and collectively with colleagues. Family members and clinicians experienced sympathy cards as a meaningful continuation of care after a patient's death.
CONCLUSIONS: Inviting clinicians who cared for deceased patients to offer personalized, handwritten condolences to bereaved family members may cultivate sincere and individualized expressions of sympathy that bereaved families appreciate after the death of patients involved in the 3 Wishes Project.
Introduction : Il n’existe que peu de données dans la littérature actuelle sur la manière dont les médecins généralistes vivent le décès de leurs patients. Les principales études sur le sujet sont des travaux qualitatifs. Il manque de travaux quantitatifs pour en dresser un état des lieux exhaustif. L’objectif de cette étude est d’analyser les décès des patients vécus comme difficiles par leur médecin généraliste.
Matériel et méthode : Il s’agissait d’une étude épidémiologique descriptive quantitative transversale. La population étudiée était celle de l’ensemble des médecins généralistes libéraux de la région Nouvelle-Aquitaine. Le critère de jugement principal était le pourcentage de médecins généralistes vivant difficilement le décès de leurs patients.
Résultats : Dans cette étude, 76 % des médecins généralistes vivaient comme difficile le décès de leurs patients. Ils étaient 29 % à ressentir le besoin d’être aidés dans cette situation. Le retentissement professionnel et personnel était présent chez respectivement 37 % et 31 % des médecins. La consommation de médicaments survenait dans 4,8 % de ces situations, celle d’alcool dans 4 % des cas. Les structures d’aides aux généralistes étaient insuffisantes pour 57 % d’entre eux.
Discussion et perspectives : Cette étude a mis en évidence que les médecins généralistes sont très affectés par les décès de leurs patients. Le retentissement émotionnel est intense et pourrait influer sur les soins apportés aux patients. Ces situations sont source de difficultés au cours de l’exercice professionnel comme dans la vie personnelle. Les structures d’aide existantes sont très insuffisantes et méconnues.
Conclusion : Cette étude a permis de dresser un état des lieux de la souffrance des médecins généralistes lors du décès de leurs patients. Il est nécessaire de mieux accompagner les médecins dans cette situation.
Losing a loved one is among the most common and stressful traumatic events that a child or and adolescent can experience and can be associated with mental health and somatic disorders, as well as a range of life issues and potentially negative outcomes that may impact longitudinal development. Complicated grief, a disorder that has been studied primarily among adults, has received increasing recognition among children and adolescents in recent years. The demonstration of the distinctive character of grief reactions in relation to major depressive disorder and posttraumatic stress disorder has resulted in the inclusion of “persistent complex bereavement disorder” in an annex section of DSM-5 and of “prolonged grief disorder” in ICD-11. The grieving process in children and adolescents is not linear and is often characterised by periods of regression. Developmental phases should be taken into account to understand and clinically describe grief reactions occurring during childhood and adolescence. There are currently numerous interventions for bereaved children and adolescents, but little evidence to support them. More research focusing on the understanding of the underlying mechanisms and the risk factors for complicated grief among children and adolescents, as well as the implementation of evidence-based interventions, is definitely warranted.