L’objectif de ce travail de réflexion est de mieux appréhender ce que vivent ces personnes qui ont foi en cette continuité de la vie dans leur deuil, et de porter un regard ouvert sur les expériences autour de la mort qui sont parfois difficiles à livrer. Le but étant d’appréhender au mieux la problématique que génère la croyance en l’au-delà sur le processus et le travail de deuil :
N’est-il pas contraire à l’objectif d’acceptation de la séparation avec l’être cher, que de croire qu’il persiste ailleurs dans l’au-delà ?
[Extrait de l'introduction]
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
Dans ce livre III des Tusculanes, Cicéron, en deuil de sa fille, évoque en disciple des stoïciens la mort, la douleur, le chagrin, s’exhortant à surmonter sa peine par la réflexion et la maîtrise de soi.
A 11 ans, Halla perd sa soeur jumelle. Les cendres de la défunte sont ensevelies par ses parents qui annoncent à Halla qu’ils veulent planter un arbre à cet endroit. Mais la fillette, qui perd ainsi son alter ego et son miroir, est dévastée. Sa mère devient distante et froide et son père ne la comprend pas. Elle apprend seule à vivre avec cette absence.
Sous forme d’un journal allant de 2005 à 2019, l’auteur retrace son histoire d’amour avec Christophe, son époux mort à la suite d’une prise mortelle de drogues de synthèse. Il raconte leur rencontre, leurs combats communs, les circonstances de sa disparition et son propre deuil, de même qu’il alerte les pouvoirs publics sur la circulation de ces substances.
Apparu en France au XVIe siècle, le tombeau poétique est un recueil collectif destiné à assurer la gloire d’un défunt, en tant que genre musical puis littéraire. En le comparant avec des équivalents étrangers (élégie anglaise, stances espagnoles ou monument russe), les contributeurs étudient les spécificités du genre et interrogent le rapport de l’art au deuil, à la mémoire et à la transmission.
BACKGROUND: The ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.
METHODS: 194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.
RESULTS: Of the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.
CONCLUSIONS: Our findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
CONTEXT: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL).
OBJECTIVES: This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs.
METHODS: In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006-2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multi-stage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness.
RESULTS: 110/114 parents responded to open-ended items; 63% (n=69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) prior to death. 71% (n=78/110) had palliative care involvement and 65% (n=69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond 'readiness' for their child's death. Three domains emerged that contributed to parents' lack of preparedness: (1) chronic illness experiences; (2) pretense of preparedness; and (3) circumstances and emotions surrounding their child's death.
CONCLUSIONS: Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond 'readiness.' More research is needed to identify supportive elements among parents facing their child's EOL.
I had been on the phone with Madeleine's mother for fifteen minutes, and she had sobbed throughout. She pleaded with me, "You won't even let our family visit her together. If you really want to help my daughter, you will let us stay with her." Madeleine, who was twenty-four years old, was dying of end-stage acute myeloid leukemia and was intubated in one of our intensive care units. Her intensivist had requested a clinical ethics consultation for potentially inappropriate medical treatment-in my world of clinical ethics consultation, routine stuff. Except that, in March 2020, nothing was routine anymore. The Covid-19 pandemic calls for creative thinking about ad hoc and post hoc bereavement efforts, and it may result in efforts to revise existing accounts of what constitutes a good death in order to accommodate patients' and families' experiences at the end of life during a pandemic.
Siblings of children with serious illness often experience psychosocial distress during and after there sibling's illness. Their psychosocial well-being may not receive adequat focus due to their sibling's illness. This Fast Fact discusses sibling emotions and identify effective ways clinicians can support them. See Fast Fact #47 and #138 for information about the developmental stages for how children conceptualize death and illness.
Palliative care (PC) focuses on caring for the whole person, from birth to death, while managing symptoms and helping to navigate medical complexities. Care does not stop at the time of death, however, as assisting patients, families, and fellow clinicians through grief and bereavement is within PC's purview. Unfortunately, many clinicians feel unprepared to deal with these topics. In this article, PC and hospice clinicians define and explain bereavement, distinguish normative grief from pathological grief, offer psychometrically sound scales to screen and follow those suffering from grief, and discuss the interaction between grief and bereavement and the physical and mental health of those who are left behind after the death of a loved one.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
In few periods in human history have bereavement and grief been on so many people's minds as they are today. As the coronavirus disease 2019 (COVID-19) ravages the world, we have seen many perish in a short time. Many have died alone because of requirements for physical distancing. Even more will succumb as COVID-19 continues to spread. Moreover, deaths from other causes, numbering over 50 million annually, are also happening amid physical distancing and other COVID-19-related challenges. The pandemic is affecting the way terminally ill patients are being cared for, when and how people are dying of other causes, and how bodies are being handled and bereavement rituals performed. The bereaved are required to grieve without the support of usual social and cultural rituals. Grieving is further encumbered by cascading life stressors deriving from policies needed to mitigate the pandemic. Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much. Among other mental health problems, we will likely see an increase in prolonged grief disorder. In this commentary, we review the new diagnosis of prolonged grief disorder and outline why we might anticipate increased rates of this condition on the heels of COVID-19, especially among older persons. We suggest ways we might mitigate this emerging problem.
Objective: To describe the landscape of digital resources available for grief and bereavement, and to explore cultural variations through the analysis of patterns in three languages with a multinational repartition (English, French and Spanish).
Methods: For each language, websites were collected through a systematized approach and classified according to their category (governmental, health, educational, social media, conventional media, spiritual), their country of origin, and the type of support they offered (practical support, services, peer support, informational support, resources).
Results: A total of 2587 websites (English: 1003; French 678; Spanish: 906) were analyzed. Cultural variations were observed both for the websites’ categories and the types of support. Half of the websites presented at least one type of support, informational support being the most prevalent, followed by practical support. English websites presented significantly more support than Spanish websites, with French websites in between.
Practice implications: By using an extensive survey, our results allow for a general mapping of online websites that is comparable across languages, but also unveil digital dynamics unknown to date. These results further the multicultural understanding of digital support for grief and bereavement, propose an innovative and operational typology for online support and raise awareness of the current support landscape.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
Ce rapport avait pour objectif de guider l'action et le questionnement professionnels pour permettre le respect maximal des volontés liées à la fin de vie et un accompagnement le plus humain possible de la personne et des proches. Voici les résultats obtenus par le groupe de travail :
- Anticiper les situations de fin de vie en favorisant les échanges et en s’appuyant au maximum sur les ressources disponibles que ce soit au sein des équipes ou avec les partenaires du territoire.
- Informer et communiquer régulièrement sur les actions mises en œuvre, les adaptations qui s’imposent en période d’épidémie et les évolutions possibles des situations de fin de vie dont le décès.
- Garantir le confort de la personne et respecter les souhaits de chacun tout en prenant des décisions partagées lorsque des arbitrages s’imposent.
- Maintenir le lien avec les proches et l’entourage et leur apporter un soutien lors de la survenue du décès.
- Soutenir l’ensemble des professionnels dont la charge émotionnelle s’est accentuée.
- Préparer le deuil en offrant la possibilité aux personnes accompagnées et aux professionnels de partager un geste un moment, en mémoire de la personne.
This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.