Entretien avec trois professionnelles du funéraire, et en particulier de la crémation, à propos des rites mis en oeuvre dans le cadre de leur intervention. Quel est l'impact de l'accomplissement de rites funéraires dans le déroulement du deuil ? Des directives du défunt sur le devenir de son propre corps et la conduite de la cérémonie ? Du devenir des cendres ?
Cet ouvrage aborde la question délicate des frères et soeurs d'enfant gravement malade ou atteint d'un handicap. Des membres de fratries témoignent de leur vécu et des émotions qui les traversent. En parallèle, des experts apportent des pistes de réflexion afin de mieux répondre aux besoins affectifs et relationnels de ces enfants.
Death, bereavement, and grief are part of everyone's life experience. In the last few decades, media and social network platforms gradually began to influence people's ways of perceiving and coping with death and dying, and the research on the phenomenon of digital death is growing. Facebook is one of the most known and used social networks, and one of the few that developed specific measures to manage the profile pages of the deceased users. Based on these premises, this survey aimed to investigate how 1281 Italian participants, aged 14-77 years old, approach death on Facebook with respect to their opinions, attitudes, and emotional reactions, through an ad-hoc online survey. The results highlight how the participants seem to have different attitudes and emotions toward death, grief and mourning on the social network platform. The age of the participants seems to influence the use of the social network and the attitudes and the emotions toward the topic of investigation. Moreover, for this Italian sample, the custom of grieving and commemorating on social media is starting to spread along with the usual cultural practices without replacing them.
Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers.
Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year.
Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation.
Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%-43.64%) from 181-365 to 1-30 days before the patient's death, with kappa values (95% confidence interval) from -0.060 (-0.123 to 0.003) to 0.050 (-0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56-65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden.
Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.
Objectif : Cette étude vise à développer des axes de réflexion concernant la fin de vie et ainsi mieux comprendre les facteurs éthique et émotionnel en jeu dans la prise de décision chez le médecin travaillant en soins palliatifs et plus particulièrement dans une situation où il est question d’une limitation et/ou arrêt de traitement (LAT).
Méthode: La réflexion éthique et le vécu émotionnel de 10 médecins, exerçant en services ou en équipes mobiles de soins palliatifs dans la région Auvergne-Rhône-Alpes, ont été évalués par auto-questionnaire.
Résultats: Dans un contexte de prise de décision de LAT, les médecins ont estimé que la réflexion éthique a un impact sur leur prise de décision dans leur pratique professionnelle en général mais également dans leur dernière situation de LAT. Les résultats diffèrent concernant le vécu émotionnel, 80 % des médecins ont pensé que le vécu émotionnel jouait un rôle dans leur pratique professionnelle générale. En revanche, 70 % des médecins considèrent que leur vécu émotionnel n’a pas influencé la prise de décision lorsqu’ils sont interrogés plus spécifiquement sur la dernière situation clinique où il était question d’une LAT.
Conclusion : Les médecins considèrent que la réflexion éthique est bien présente et semble indispensable pour garder, au centre de la décision, le patient dans son unicité. Au vu des résultats, la prise de décision de LAT semble faire ressentir des émotions fortes à ces médecins qui paraissent difficilement identifiables et exprimables.
CONTEXT: Advancing the science of serious illness communication requires methods for measuring characteristics of conversations in large studies. Understanding which characteristics predict clinically important outcomes can help prioritize attention to scalable measure development.
PURPOSE: To understand whether audibly recognizable expressions of distressing emotion during palliative care serious illness conversations are associated with ratings of patient experience or 6-month enrollment in hospice.
METHODS: We audio-recorded initial palliative care consultations involving 231 hospitalized people with advanced cancer at two large academic medical centers. We coded conversations for expressions of fear, anger and sadness. We examined the distribution of these expressions and their association with pre-post ratings of Feeling Heard & Understood and 6-month hospice enrollment following the consultation.
RESULTS: Nearly 6 in 10 conversations included at least one audible expression of distressing emotion (59%; 137/231). Among conversations with such an expression, fear was the most prevalent (72%; 98/ 137) followed by sadness (50%; 69/ 137) and anger (45%; 62/137). Anger expression was associated with more disease-focused end-of-life treatment preferences, pre-post consultation improvement in feeling heard & understood and lower 6-month hospice enrollment. Fear was strongly associated with pre-consultation patient ratings of shorter survival expectations. Sadness did not exhibit strong association with patient descriptors or outcomes.
CONCLUSION: Fear, anger and sadness are commonly expressed in hospital-based palliative care consultations with people who have advanced cancer. Anger is an epidemiologically useful predictor of important clinical outcomes.
Context: Responding to emotion cues is an essential skill for communicating with patients and families, but many health care trainees have difficulty applying this skill within the context of a complex conversation.
Objectives: We created an original online module to facilitate deliberate practice of a three-skill framework for responding to emotion cues during complex or nonlinear serious illness conversations.
Methods: Our original online module uses a gamebook format, which prompts trainees to engage in focused and repetitive practice of three well-defined skills for responding to emotion cues in a simulated family conference. We implemented the module as a part of a communication skills curriculum for interns rotating in the intensive care unit. After completing the module, all interns answered an open-ended survey question about their perceived skill acquisition. Results were analyzed by a qualitative method and coded into themes.
Results: About 71% of interns (n = 65 of 92) completed the online module and open-ended survey question. About 89% of participants responded that they would use a naming, understanding, respecting, supporting, or exploring statement in response to an emotion cue. Nearly two-thirds of participants articulated their rationale for using naming, understanding, respecting, supporting, or exploring statements (e.g., preparing patients to process complex medical information, eliciting information about patient perspective.)
Conclusion: Our online emotion cue module is a novel tool for deliberate practice of advanced skills for responding to emotion cues in serious illness conversations. In future studies, we will investigate whether our module's efficacy is enhanced by using it as a part of a flipped classroom curriculum with an in-person simulation session.
Context: Cancer is a life-changing diagnosis accompanied by significant emotional distress, especially for children with advanced disease. However, the content and processes of discussing emotion in advanced pediatric cancer remain unknown.
Objectives: To describe the initiation, response, and content of emotional communication in advanced pediatric cancer.
Methods: We audiorecorded 35 outpatient consultations between oncologists and families of children whose cancer recently progressed. We coded conversations based on Verona Coding Definitions of Emotional Sequences.
Results: About 91% of conversations contained emotional cues, and 40% contained explicit emotional concerns. Parents and clinicians equally initiated cues (parents: 48%, 183 of 385; clinicians: 49%) and concerns (parents: 51%; clinicians: 49%). Children initiated 3% of cues and no explicit concerns. Emotional content was most commonly related to physical aspects of cancer and/or treatment (28% of cues and/or concerns, present in 80% of conversations) and prognosis (27% of cues and/or concerns, present in 60% of conversations). Clinicians mostly responded to emotional cues and concerns implicitly, without specifically naming the emotion (85%). Back channeling (using minimal prompts or words that encourage further disclosure, e.g., uh-huh) was the most common implicit response that provided space for emotional disclosure (32% of all responses). Information advice was the most common implicit response that reduced space for further emotional disclosure (28%).
Conclusion: Emotional communication in advanced pediatric cancer appears to be a subtle process where parents offer hints and clinicians respond with non-emotion-laden statements. Also, children were seldom engaged in emotional conversations. Clinicians should aim to create an environment that allows families to express emotional distress if and/or when ready.
This study aimed to identify the relationships of perception of hospice and palliative care with emotional intelligence and cognitive empathy in nursing students. The participants were 458 nursing students. Data were collected using structured questionnaires and analyzed with Pearson correlation coefficients, independent-samples t test, and binary logistic regression. Perception of hospice and palliative care was significantly and positively correlated with emotional intelligence (r = 0.224, P < .001) and cognitive empathy (r = 0.311, P < .001). Mean score differences of perception of hospice and palliative care by emotional intelligence and cognitive empathy were statistically significant (t = -3.973, P < .001; t = -4.109, P < .001, respectively). Logistic regression yielded an odds ratio of 1.860 (P < .001; 95% confidence interval, 1.283-2.698) between the perception of hospice and palliative care and emotional intelligence and an odds ratio of 2.028 (P < .001; 95% confidence interval, 1.394–2.951) between the perception of hospice and palliative care and cognitive empathy. Emotional intelligence and cognitive empathy should be cultivated to raise nursing students' perception of hospice and palliative care and must be included when developing related curricula and extracurricular programs.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
Although burnout syndrome has been investigated in depth, studies specifically focused on palliative home care are still limited. Moreover, there is still a lack of evidence regarding the interplay between emotional flexibility and sensitivity to context in preventing burnout in home care settings. For these reasons, the aims of this study were to examine burnout symptoms among practitioners specializing in palliative home care and to investigate the role of regulatory flexibility and sensitivity to context in understanding burnout. An exploratory cross-sectional design was adopted. A convenience sample (n = 65) of Italian specialist palliative care practitioners participated in this study. Participants were recruited between February and April 2019 from two palliative home care services that predominantly cared for end-of-life cancer patients. The Italian version of the Maslach Burnout Inventory (MBI), the Flexible Regulation of Emotional Expression (FREE) scale (a measure of emotional flexibility), and the Context Sensitivity Index (CSI) (a measure of sensitivity to context) were administered. Analyses of variance were conducted using the three MBI factors as dependent variables and profession as an independent variable. Subsequently, three identical analyses of covariance were conducted with age, work experience, flexibility and sensitivity to context as covariates. The results showed a low burnout risk for all three of the MBI factors, and there were no gender differences. An ANOVA revealed a significant effect of profession type and age on the emotional exhaustion factor of the MBI, and an ANCOVA indicated that these effects persisted after covariates were accounted for. The results also showed a significant effect of the FREE score on emotional exhaustion. These findings can help explain the differential contributions of profession type and age to the burnout symptoms investigated. In addition, the emotional flexibility component, as an aspect of resilience, represents a significant and specific factor of emotional exhaustion. Interventions to prevent burnout must consider these relationships.
Prolonged grief disorder, characterized by severe, persistent, and disabling grief, has recently been included in the International Classification of Diseases-11 (ICD-11). Emotional disturbances are central to such complicated grief responses. Accordingly, emotion regulation is assumed critical in the development, persistence and treatment of complicated grief. Yet, a comprehensive review on this topic is lacking. We conducted a systematic review (PROSPERO: CRD42017076061) searching PsychInfo, Web of Science and PubMed to identify quantitative research examining relationships between emotion regulation and complicated grief. Sixty-four studies on 7715 bereaved people were identified, focusing on a variety of emotion regulation strategies (i.e., experiential avoidance, behavioral avoidance, expressive suppression, rumination, worry, problem solving, cognitive reappraisal, positive thought, and mindfulness). Our synthesis showed strong evidence that experiential avoidance and rumination play a role in the persistence of complicated grief. More generally, surveys support positive associations between putative maladaptive emotion regulation strategies and complicated grief, and negative associations between putative adaptive emotion regulation strategies and complicated grief. Laboratory research yielded mixed results. Emotion regulation is critical in complicated grief, and in particular experiential avoidance and rumination form important targets in complicated grief treatments. We advise expanding current knowledge, by employing more advanced, intensive data collection methods and experiments across diverse samples. Increasing knowledge in this domain will improve clinical practice.
Caring for dying patients is often a new experience for ICU residents. End-of-life and palliative training in medical schools is lacking. Many residents experience troublesome emotions during residency. Literature establishes that residents show lower well-being scores than similar populations. To make emotional wellness a priority for residents, monthly mandatory Palliative Care Rounds (PCR) were established in the ICU. The role of the Palliative Care Social Worker (PCSW) is central in planning and implementing PCR. Social workers have unique skills well-suited to this type of activity in an acute care setting. Residents present cases and the PCSW facilitates discussion to explore complex emotions helping residents process their feelings. Forty-five residents responded to a seven-item questionnaire, out of 70 potential resident respondents (64% response rate). Only 60% said they learned about end-of-life and its emotional aspects in medical school. Ninety-eight percent reported the PCR helped them be more aware of their feelings, and would recommend it to colleagues. Ninety-five percent said PCR are important for interns and residents to help them grow professionally and become better clinicians. Through the process of dissecting their emotions, PCR allows for personal and professional growth that improves residents’ ability to become empathic providers.
Context: Doctors caring for patients with life-limiting illness are often exposed to emotional distress.
Objectives: We aimed to explore the experiences and perceptions of junior doctors working full time in a palliative care rotation. We examined the lessons junior doctors learnt in managing their emotions as they face patients' death on a daily basis.
Methods: We conducted a qualitative study with seven focus group discussions involving 21 junior doctors (medical officers and residents). Data were analyzed using qualitative thematic analysis to identify the themes related to the perceived challenges of these junior doctors and how they managed the struggles. Interviews were conducted with junior doctors who spent at least two months in a palliative care unit in a tertiary hospital or an inpatient hospice.
Results: junior doctors caring for dying patients in a palliative care rotation faced internal conflicts. Conflicting feelings arose because of differing expectations from their preconceived notions of their roles as doctors. Two main themes of internal struggles were professional distancing and emotional detachment as well as prognostic uncertainty and when to withhold and withdraw medical treatments. Coping strategies that helped included mentoring and role modeling provided by palliative care physicians, reframing their care experiences and reflection to find meaning in their work.
Conclusion: A palliative care rotation exposes junior doctors to emotionally overwhelming experiences. With proper guidance, this exposure is useful in teaching junior doctors important coping strategies, allowing learning to occur at a deeper level.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Pistache, la chatte de la famille, est morte en laissant trois chatons. Les deux enfants se demandent comment vont faire les chatons sans leur maman. Ils se demandent aussi pourquoi on est traversé par autant d'émotions qui peuvent être contradictoires lorsqu'un être cher meurt.
Boléro le lapin et Musette l'oursonne sont inséparables. Quand Musette meurt, Boléro reste tout seul et n'a plus goût à rien. Mais peu à peu, au rythme des saisons, et grâce aux autres animaux de la forêt, Boléro redécouvre la saveur des choses simples et la force de l'amitié.
Avec beaucoup de sensibilité, on découvre les différents sentiments de Boléro au fil des jours après la mort de Musette. Le partage avec les autres animaux tient une place importante dans l'histoire qui aidera Boléro jusqu'à la fin de l'histoire.
Une promenade à la suite d'un chat amène Mehdi et Aimée dans un cimetière. Mehdi raconte la mort de sa grand-mère à Aimée. Les deux enfants vont évoquer beaucoup de questions sur la mort avec leurs yeux d'enfants.
Les enfants, dans leurs jeunes années, se posent souvent des questions pratiques autour de la mort et des ressentis que cela engendre. Ce livre apporte des réponses simples et justes avec des mots d'enfant.
Simon et Annabelle sont à l'école primaire ensemble et sont amoureux. Un jour, Simon tombe malade : une leucémie. Malgré les traitements, il meurt. L'album présente les émotions traversées par Annabelle.
Mamie Babka et Petite Ourse, deux voyageuses ourses, cheminent ensemble. Un jour, Mamie Babka s'allonge et dit qu'elle est arrivée. Petite Ourse la veille un moment et reprend son chemin, pousée par le vent (ou le souvenir de Mamie Babka ?) qui lui dit de continuer. Petite Ourse entend des rires et rencontre Oumi, autre ourse avec laquelle elle poursuit le chemin.