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]
CONTEXT: Evaluation of end-of-life care is a key element in quality improvement, and population-based mortality follow-back designs have been used in several countries. This design was adapted to evaluate a Good Death in Japan.
OBJECTIVES: This study aimed to explain the scientific background and rationale for assessing the feasibility of a mortality follow-back survey using a randomized design.
DESIGN: We utilized a cross-sectional, questionnaire survey to assess feasibility using response rate, sample representativeness, effect on response rate with two methods, and survey acceptability.
SETTING/PARTICIPANTS: The subjects were 4,812 bereaved family members of patients who died from the major five causes of death: cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure, using mortality data.
RESULTS: Overall, 682 (14.2%) questionnaires could not be delivered, and 2,294 (55.5%) family members agreed to participate in the survey. There was little difference in the distribution of characteristics between the study subjects and the full population, and sample representativeness was acceptable. Sending the questionnaire with a pen achieved a higher response rate than without (weighted: 48.2% vs. 40.8%; p<0.001). In follow-up contact, there was no difference in response rate between resending the questionnaire and a reminder letter alone (weighted: 32.9% vs. 32.4%; p=0.803). In total, 84.8% (weighted) of the participants agreed with improving quality of care through this kind of survey.
CONCLUSIONS: This study demonstrated the feasibility of conducting a population-based mortality follow-back survey using a randomized design. An attached pen with the questionnaire was effective in improving the response rate.
Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of 'good death' for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.
This study was conducted to examine the importance of the concept of a good death and the contributing factors from the perspectives of family caregivers of advanced cancer patients. This descriptive and cross-sectional study, conducted with 182 family caregivers, were collected using a questionnaire form and the “Good Death Scale”. The number and percentage distribution, multiple linear regression were used evaluation of data. The total score of the Good Death Scale was 62.65 ± 4.60. The factors contributing to the importance of the concept of a good death were determined as the presence of chronic disease; the type of treatment given to the patient; the presence of another family member who was previously diagnosed with cancer; the presence of a family member who has died of cancer and previously caregiving to a terminally ill family member. This study revealed that the concept of a good death is seen as very important.
As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable.
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.
Both non-rapid eye movements and rapid eye movements sleep facilitate the strengthening of newly encoded memory traces, and dream content reflects this process. Numerous studies evaluated the impact of diseases on dream content, with particular reference to cancer, and reported the presence of issues related to death, negative emotions, pain and illness. This study investigates death and illness experiences in 13 consecutive patients with sarcoma compared to paired controls, early after diagnosis, evaluating dream contents, fear of death, mood and anxiety, distress, and severity of disease perception (perceived and communicated). Ten patients and 10 controls completed the study. Dream contents were significantly different between patients and normative data (DreamSat) and patients and controls (higher presence of negative emotions, low familiar settings and characters and no success involving the dreamer). Illness and death were present in 57% of patients' dreams (0% among controls), but no differences emerged between patients and controls in regard to anxiety and depression, distress and fear of death, even if the severity of illness was correctly perceived. The appearance of emotional elements in dreams and the absence of conscious verbalization of distress and/or depressive or anxious symptoms by patients could be ascribed to the time required for mnestic elaboration (construction/elaboration phase) during sleep.
The concept of death anxiety is expected of older persons as they age and are nearing their end-of-life. This study examined the relationship between religiosity, spirituality, and death anxiety among Filipino older adults. A convenience sample of 125 Filipino older adults were recruited in the study. Data were collected using the Spirituality Scale, Revised Death Anxiety Scale, and Dimensions of Religiosity Scale. Results of the study revealed that spirituality (r=-0.168, p = 0.061) and religiosity (r=-0.044, p = 0.623) had an inverse relationship with death anxiety. However, even with the inverse relationship, spirituality and religiosity were not significantly correlated with death anxiety, although participants were well aware of the importance of these concepts on their lives. It is suggested that assessing spirituality and religiosity of this age group can inform nurses to engage in quality nursing practice, by affirming the vulnerability, and preserving the personhood of older persons as they near their end-of-life.
The COVID-19 pandemic has disproportionately affected older adults, not only through greater risk of illness and death but also by exacerbating underlying distress related to aging and mortality. Older adults' struggles with loneliness, fear of dying, and the sequelae of untreated medical conditions are viewed through the lens of anticipatory grief, and coping and treatment strategies are offered.
The role of death and dying can play a central role in illness and in health care, and yet the reality of death in making sense of illness is often overlooked. Guided by the philosophy of Martin Heidegger (1962) and the works of Viktor Frankl (1959), this article, which is part of a larger study (Quinn, 2018), reveals the presence of death in the lives of people trying to make sense of having cancer. This article demonstrates that facing up to death is a core part of the personal experience of living with cancer for many people. Amid the diagnosis and the uncertainty it brought, the reality of death is never far away. While the 15 participants who took part in this study in 2015 wanted to survive, some acknowledged that death was very close. Paying attention to the presence of death in these personal stories may help improve the support healthcare professionals give to those living with advanced disease.
BACKGROUND: End-of-life care is high on policy and political agendas in the UK and internationally. Nurses are at the forefront of this, caring for dying patients, 'managing' the dead body, and dealing with the corporeal, emotional and relational dimensions of death. Little is known about nurses' prior or early professional experiences of and reactions to death, dying and the corpse and how these might influence practice.
AIMS: To appraise the international literature on nurses' early experiences of death, dying and the dead body, to better understand how these might influence subsequent practice, and how this might inform our teaching of death, dying and last offices.
METHODS: A scoping review was undertaken of peer-reviewed publications between, 2000 and 2019, which included nurses working in hospital, care homes and the community. Medline, PubMed, PsychINFO and CINAHL databases were searched and 23 papers meeting the inclusion criteria were read. Arksey and O'Malley's (2005) five-stage approach was adopted to scope the relevant international literature, using where relevant the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Selected papers were independently reviewed and subjected to thematic analysis, leading to the generation of five overarching themes.
RESULTS: The five themes were: different philosophies of care; relationships; knowledge; impact of death; and giving care. The studies came from diverse geographical locations across different settings and were primarily qualitative in design.
CONCLUSIONS: Students and registered nurses are impacted both positively and negatively by their early encounters with death and dying. Good communication with patients, families and between professionals, understanding of what constitutes a 'good' death, and high-quality mentorship and support were of particular importance.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Death and infection were closely linked from the start of the HIV epidemic, until successful treatments became available. The initial impact of mostly young, gay men dying from HIV was powerful in shaping UK responses. Neoliberal discourses developed at the same time, particularly focusing on how citizens (rather than the state) should take responsibility to improve health. Subsequently “successful ageing” became an allied discourse, further marginalising death discussions. Our study reflected on a broad range of meanings around death within the historical UK epidemic, to examine how dying narratives shape contemporary HIV experiences. Fifty-one participants including people living with HIV, professionals, and activists were recruited for semistructured interviews. Assuming a symbolic interactionist framework, analysis highlighted how HIV deaths were initially experienced as not only traumatic but also energizing, leading to creativity. With effective antiretrovirals, dying changed shape (e.g., loss of death literacy), and better integration of palliative care was recommended.
Background: To effectively care for dying patients, nurses need to possess death self-efficacy—the state of having both a range of skills and capabilities to provide care to dying patients and confidence in one’s ability to do so. A paucity of death self-efficacy may lead to burnout.
Objectives: The aims of this study are to clarify oncology nurses’ death self-efficacy and to explore its relationships with attitudes toward death and burnout.
Methods: A cross-sectional study was performed in 7 cancer hospitals across mainland China between June and July 2019. Oncology nurses completed an online survey consisting of the Death Self-efficacy Scale, Death Attitude Profile–Revised Scale, and Maslach Burnout Inventory.
Results: The 755 oncology nurses completing the survey reported low death self-efficacy and high levels of burnout. Those who had more years of clinical experience, had the highest professional rank, talked death quite often, and have received palliative care trainings, doing no shift work, scored higher on death self-efficacy. Death self-efficacy was positively correlated with positive attitudes toward death and negatively correlated with levels of burnout. The multiple regression analysis showed that death self-efficacy and attitudes toward death were independent, significant predictors of oncology nurses’ burnout.
Conclusions: Chinese oncology nurses are not well prepared to care for dying cancer patients and cope with death-related issues.
Attitude to death and death anxiety in patients with severe psychiatric disorders have been studied rarely so far, although this is an existential perspective for each human being and clinically seems to be changed in patients with depression and schizophrenia. Patients with depression (mean age 46.30 ± 13.39; 12 women, 8 men) and schizophrenia (mean age 38.95 ± 1285; 9 women, 11 men), as well as healthy controls, were included in the study. Death anxiety and attitude to death were assessed using the newly developed and currently validated BOFRETTA scale. Attitude to death was significantly worse in the group of patients with schizophrenia, especially in those with prominent negative symptoms. Concerning death anxiety, patients with schizophrenia and also those with depression exhibited higher mean values compared with healthy controls in the same age range. These results suggest that there are specific similarities and differences concerning attitude to death and death anxiety in patients with psychotic and affective disorders. It can be concluded that existential aspects such as death and meaningful life should also be considered within the treatment of patients with severe mental disorders.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
Much of the scholarly literature sees death as a taboo topic for Chinese. To test this assumption, this study held seven focus groups in the Greater Toronto Area in 2017. It found that the majority of the older Chinese immigrant participants talked about death freely using either the word death or a euphemism. They talked about various issues including medical treatment and end-of-life care, medical assistance in dying, death preparation, and so on. A small number did not talk about death, but it seemed their reluctance was related to anxiety or discomfort or simply reflected a choice of words. The study concludes death as taboo could be a myth, at least for older Chinese immigrants.
The concept of a good death is crucial in palliative care, but its relationship with attitudes toward death and feelings of interconnectedness needs to be further deepened. The first aim of this study was to explore the concept of good death, attitudes toward death, and feelings of interconnectedness among family caregivers (FCs) and health-care providers (HCPs) of terminally ill patients with cancer. The second aim was to analyze associations of good death concept with attitudes toward death and feelings of interconnectedness. Participants were asked to assess the importance of features that characterize a good death. To explore each person's attitude toward death and feelings of interconnectedness, 3 open questions were used. The sample consisted of 49 participants: 24 (48.98%) FCs and 25 (51.02%) HCPs. Nine good death features were considered essential by more than 70% of participants. These referred to the physical (eg, symptoms control), social (eg, loved ones' presence), emotional (eg, sharing emotions), and spiritual (eg, inner peace) dimensions. Importance attributed to components of a good death such as patient's awareness and acceptance of death, meaning, respect for the patient's wishes, and inner peace were found to be associated with lack of avoidance and acceptance toward death and feelings of interconnectedness. Given the importance of FCs and HCPs in providing care and their impact on the patients' dying process, it is necessary to reflect upon how their personal attitudes and previous experiences influence the care of dying patients.
Le développement exponentiel de nouvelles techniques dans le domaine médical s’applique aussi aux patients en fin de vie, opérant un changement dans les mentalités. La fréquence et la manière de mourir des enfants se sont modifiées tout comme la représentation que l’on s’en fait. L’objectif de notre étude était d’évaluer les enjeux et la représentation de la mort du nouveau-né et de l’enfant dans la société française contemporaine ainsi que les déterminants socioculturels pouvant les conditionner.
Background: Our objectives were to test whether during a potentially life-threatening medical emergency, perceived threat (a patient’s sense of life endangerment) in the emergency department (ED) is common and associated with the subsequent development of posttraumatic stress disorder (PTSD) symptoms.
Methods: This study was an ED-based prospective cohort study in an academic hospital. We included adult patients requiring acute intervention in the ED for resuscitation of a potentially life-threatening medical emergency, defined as respiratory or cardiovascular instability. We measured patient-perceived threat in the ED using a validated patient self-assessment measure (score range = 0 to 21, with higher scores indicating greater perceived threat). We performed blinded assessment of PTSD symptoms 30 days after discharge using the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5).
Results: Ninety-nine of 113 (88%) patients completed follow-up, with 98% reporting some degree of perceived threat, median (interquartile range [IQR]) perceived threat score 12 (6 to 17), and 72% reported PTSD symptoms in relation to their ED visit (median [IQR] PC-5 score = 7 [0 to 30]). Patients with respiratory instability had higher median (IQR) perceived threat scores (16 [9 to 18] vs. 9 [6 to 14)] and PCL-5 scores (10 [2 to 40] vs. 3 [0 to 17]) compared to patients without respiratory instability. In a multivariable linear regression model adjusting for potential confounders, greater perceived threat in the ED was independently associated with higher PCL-5 scores (ß = 0.79, 95% confidence interval [CI] = 0.15 to 1.42). Among the individual perceived threat items, the feeling of helplessness during resuscitation had the strongest association with PCL-5 score (ß = 5.24, 95% CI = 2.29 to 8.18).
Conclusions: Perceived threat during potentially life-threatening emergencies is common and independently associated with development of PTSD symptoms. Additional research to test whether reduction of perceived threat in the ED attenuates the development of PTSD symptoms following potentially life-threatening emergencies is warranted.