Nous ne pourrons vivre littéralement notre mort que lorsque, existant toujours, nous mourrons, c’est-à-dire, en l’instant même de notre mort. Nul ne peut mourir à ma place. Je peux donner ma vie pour quelqu’un, mais je ne peux pas mourir à sa place au sens strict. Notre propre mort nous appartient, en ce sens, et nous avons le droit de ne pas en être privé. Et surtout, elle concerne notre vie entière, jamais un instant isolé, abstrait, qui n’existe pas. Le mourant est un vivant. Au moment ultime, il se découvre tout entier en l’acte de mourir. Mourir est un acte. Il faut pouvoir agir sa mort, la faire sienne, la vivre dans le respect de son for intérieur. Qu’en est-il du sens de « mourir », dans l’expression « mourir dans la dignité » ? On l’entrevoit d’emblée, le vrai sens, le sens concret, d’un point de vue philosophique, est celui de mourir humainement. Il s’agit de pouvoir faire sienne sa mort, la vivre dans le respect de sa dignité proprement humaine de femme ou d’homme libre.
L’article est une approche anthropologique de la mort à l’hôpital. L’analyse s’appuie sur la littérature produite sur ce sujet, sur les enquêtes menées par les deux auteures, en France et ailleurs (Madagascar et Maroc) et sur la consultation de médecine transculturelle qu’elles animent au CHU de Bordeaux. La mort et son sens y sont examinés à travers l’histoire en Occident et par des exemples de médicalisation dans d’autres contextes. Les rituels funéraires s’avèrent indispensables dans certaines cultures pour le devenir du mort et la paix des vivants. En Occident, les rituels se sont amenuisés, et la médicalisation, l’individualisme, la marginalisation des croyances religieuses, font que le sens de la mort s’est modifié. La culture de fin de vie qui est mise en œuvre dans les hôpitaux est pensée pour que la personne puisse donner un sens à sa vie et non pour la préparer à un au-delà. Des exemples sont pris dans différents services du CHU de Bordeaux. Les équipes inventent collectivement des gestes, des accompagnements par les paroles, pour que la fin de vie soit la plus apaisée. En effet, le risque le plus grave à l’hôpital est de mourir seul, condition infâme et violente que redoutent tous, patients, familles et soignants.
OBJECTIVES: The purpose of this study was to provide a comprehensive exploration of nurses' meaningful experiences of providing end-of-life care to patients and families in the intensive care unit (ICU). The objectives of this research were: (1) To explore what is meaningful practice for nurses regarding end-of-life care; (2) To describe how nurses create a good death in the intensive care unit and (3) To identify the challenges that nurses face that affect their meaningful experiences and ultimately the creation of a good death.
RESEARCH DESIGN: This study utilised an interpretive phenomenological approach using Van Manen's (1997) method.
SETTING: In-depth, face-to-face interviews were conducted with six intensive care nurses employed in a 32-bed medical/surgical intensive care unit of an academic tertiary care centre in Canada.
FINDINGS: The overarching theme from the analysis of this experience was "being able to make a difference" which was intricately woven around contributing to a good death. Three main themes were identified and included: creating a good death, navigating the challenges and making it work.
CONCLUSION: The findings reveal how intensive care nurses provide good end-of-life care and create good deaths for patients and families.
The goal of the presented research was to investigate if wisdom plays a mediating role in the relationships between meaning in life and the attitude toward death in the period of middle and late adulthood. A study was carried out that included 567 persons aged 40 to 75 years. Three measures were used: Personal Meaning Profile, Three-Dimensional Wisdom Scale, and Death Attitude Profile-Revised. The conducted analyses allowed the authors to confirm the mediating role of wisdom in the relationships between meaning in life and fear of death as well as death avoidance in persons during the period of middle and late adulthood.
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: Spirituality is the essence of a human being. Patients who have good spiritual well-being (SWB) will also have better quality of life. However, health-care providers usually under-assess this aspect due to lack of practical guideline. In Thailand, the validated survey came from a different cultural background and was heavily based on Buddhism approach.
Aims: The aim of the study is to assess the meaning of spirituality and SWB in Thai breast cancer patients in Southern Thailand where people have more diverse cultural and religious background.
Settings and Design: Descriptive qualitative phenomenology design.
Subjects and Methods: In-depth interview with stratified purposive sampling method. The interviews took place in the oncology outpatient unit department and participants' home. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, able to communicate in Thai, has a Palliative Performance Scale more than 50, and was not diagnosed with any psychological disorder.
Statistical Analysis Used: Descriptive statistic.
Results: From October 2016 to February 2018, 16 women joined the study. Three themes emerged with five subthemes: (1) feeling life worthwhile, (2) sense of belonging in the community, and (3) feeling connected to the nature.
Conclusions: For Thai women, who have breast cancer, their spirituality focuses on family, mainly their children. They also have better SWB if they have good family relationship, social support, or feeling connected with nature or higher being in a religious or nonreligious way. Future survey design needs to be broader in a secular view and on another perspective rather than the religious approach.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
This study explored the context effect in the relationship between capital (income, social support, and cultural capital) and changes in global meaning. We interviewed a sample of 352 bereaved Chinese elders from 18 communities in rural China and conducted hierarchical linear modeling for data analysis. The effects of social support and cultural capital in terms of traditional Chinese culture on changes in global meaning differed across communities. Social support earned its credit in buffering function against bereavement, whereas traditional Chinese culture posed a risk of elevating negative global meaning. More social support and positive global meaning are reliable predictors for enhancing the psychological health of bereaved elders.
Parce qu'il expose le bénévole à sa propre fragilité, l'engagement dans le bénévolat d'accompagnement auprès des personnes gravement malades, en fin de vie ou dans des situations de grande dépendance, n'est pas un projet abouti. Il a besoin d'être soutenu et nourri pour se renouveler en permanence. Mails il peut arriver aussi qu'il ne fasse plus sens.
Le bien-être du bénévole dans l'accompagnement comme la persistance de son engagement dépendent d'échanges entre lui et son association. Il est intéressant de mettre en lumière la nature de ces liens et les raisons de son utilité. La réflexion suit une sorte de chronologie qui démarre à la formation initiale, puis aborde les premiers accompagnements, pour explorer enfin les années d'accompagnement.
OBJECTIVE: Our aim was to identify possible patterns of change or durability in sources of meaning for family caregivers of terminally ill patients after the onset of support at home by an outreach palliative nursing team during a three-month survey period.
METHOD: The Sources of Meaning and Meaning in Life Questionnaire (SoMe) was administered to 100 caregivers of terminally ill patients at four measurement timepoints: immediately before the onset of the palliative care (t0), and at 1 week, 1 month, and 3 months after t0. Time-dependent changes were assessed for the completed subsample (n = 24) by means of bivariate linear as well as quadratic regression models. Multivariate regressions with dimensions of meaning in life as dependent variables were performed for the whole sample by means of random-effects models: dependent variables changed over time (four timepoints), whereas regressors remained constant.
RESULTS: No significant differences were found for psychosocial and clinical variables or for sources of meaning between the uncompleted and completed subsamples. Growth curve analyses revealed no statistically significant but tendentiously parabolic changes for any dimensions or for single sources of meaning. In multivariate models, a negative association was found between patient age, psychological burden of family caregivers, and changes in total SoMe score, as well as for the superordinate dimensions.
SIGNIFICANCE OF RESULTS: According to our hypothesis, sources of meaning and meaning in life seem to remain robust in relatives caring for terminally ill family members during the three-month survey period. A parabolic development pattern of single sources of meaning indicates an adjustment process. An important limitation of our study is the small number of participants compared with larger multivariate models because of high dropout rates, primarily due to the death of three-quarters of the participants during the survey period.
The purpose of this descriptive study was to identify whether meaning reconstruction was associated with indicators of bereavement adaptation in 66 spouses and adult child caregivers of person's with Alzheimer's disease. A cross-sectional mixed-methods design was used. Hierarchical regression models were used to examine whether meaning making predicted grief, depression, and positive and states of mind in the sample. Qualitative interviews were conducted to gain further knowledge about ways in which Alzheimer's disease caregivers construct meaning during bereavement. The majority of participants reported experiencing positive aspects of meaning reconstruction. Benefit-finding and identity change contributed to reductions in grief, and benefit-finding contributed to positive states of mind. Being a spouse and female gender contributed to increased grief and depression. Bereaved caregivers who are at risk for high levels of grief should be targeted for grief therapy interventions that foster meaning making.
Un policier revient sur son rapport à la mort dans son métier, et notamment à la mort violente. Il parle également de la mort du policier lui-même que ce soit par suicide ou meurtre. La placidité apparente du policier face à la mort n'est ni de l'indifférence, ni du cynisme mais une manière d'éviter l'angoisse liée à la confrontation à la mort.
The centrality of a loss to a bereaved individual's identity is associated with greater symptomatology, whereas meaning made of a loss is associated with positive outcomes. This article examines meaning made as a moderator of the relationship between event centrality and symptomatology. Our sample consisted of 204 bereaved undergraduate university students. Centrality was assessed using the Centrality of Events Scale, meaning made was assessed using the Integration of Stressful Life Experiences Scale, and symptomatology was assessed using the posttraumatic stress disorder Checklist-Civilian and Inventory of Complicated Grief-Revised. Meaning made had a significant moderating effect on the relationship between centrality and both measures of symptomatology. At lower levels of meaning made, centrality had a strong and positive association with symptomatology; at higher levels of meaning made, this association became weaker. These results suggest that meaning made is the key to understanding how centrality affects bereavement outcomes.
The focus in grief theories has been increasingly shifting toward questions of meaning. In this study, we draw on the meaning-reconstruction model of grief for studying the unique case of hard drug users who have experienced a drug-related death. The social context of hard drug use, as well as the death and grief circumstances, is problematic and stigmatized. Grief narratives of 10 respondents were analyzed according to the principles of grounded theory. We identified four main themes: (1) the inhibition of emotion by drugs leading to fragmented grief reactions, (2) social exclusion and notions of disenfranchized grief, (3) the acceptance of death, and (4) meaningfulness in a “biography of losses.” Connecting these results with the literature on meaning, we find that meaning-making is a multidimensional and layered process, where some layers result in meanings made while others do not. Finally, this study emphasizes the importance of social and emotional aspects of grieving, as well as the ambiguity of the notion of successful meaning-making in relation to grief.
We stand quietly at the foot of the bed and watch. The patient lies semisupine in the mechanical bed, intermittently breathing slowly and deeply before longer apneic pauses. Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from 4 continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die.
[Extrait de l'article]
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.
Objective: Many psychotherapists speak with clients about meaning in life. Meaning is an neutral evidence-based term for a subjective sense of purpose, values, understanding, self-worth, action-directed goals, and self-regulation. Since little is known about its effectiveness, our study aimed to determine the effects of meaning-centered therapies (MCTs) on improving quality of life and reducing psychological stress.
METHOD: Independent researchers selected and scored articles in multiple languages in multiple search engines. Weighted pooled mean effects were calculated following a random-effects model. Sensitivity analyses included moderators, study and sample characteristics, risk of bias, randomization, types of MCT, control condition, and outcome instruments.
RESULTS: Some 52,220 citations included 60 trials (total sample N = 3,713), of which 26 were randomized controlled trials (N = 1,975), 15 nonrandomized controlled trials (N = 709), and 19 nonrandomized noncontrolled trials with pre/post measurements (N = 1,029). Overall analyses showed large improvements from baseline to immediate posttreatment and follow-up on quality of life (Hedges' g = 1.13, SE = 0.12; g = 0.99, SE = 0.20) and psychological stress (g = 1.21, SE = 0.10; g = 0.67, SE = 0.20). As effects varied between studies, further analyses focused only on controlled trials: MCT had large effect sizes compared to control groups, both immediate and at follow-up, on quality of life (g = 1.02, SE = 0.06; g = 1.06, SE = 0.12) and psychological stress (g = 0.94, SE = 0.07, p < 0.01; g = 0.84, SE = 0.10). Immediate effects were larger for general quality of life (g = 1.37, SE = 0.12) than for meaning in life (g = 1.18, SE = 0.08), hope and optimism (g = 0.80, SE = 0.13), self-efficacy (g = 0.89, SE = 0.14), and social well-being (g = 0.81, SE = 13). The homogeneity of these results was validated by the lack of significance of moderators and alternative ways of selecting studies. Metaregression analyses showed that increases in meaning in life predicted decreases in psychological stress (ß = –0.56, p < 0.001).
SIGNIFICANCE OF RESULTS: MCT strongly improves quality of life and reduces psychological stress. MCT should be made more widely available, particularly to individuals in transitional moments in life or with a chronic or life-threatening physical illness as they explicitly report meaning-centered concerns.
In the end-of-life context, alleviation of the suffering of a distressed patient is usually seen as a, if not the, central goal for the medical personnel treating her. Yet it has also been argued that suffering should be seen as a part of good dying. More precisely, it has been maintained that alleviating a dying patient's suffering can make her unable to take care of practical end-of-life matters, deprive her of an opportunity to ask questions about and find meaning in and for her existence, and detach her from reality. In this article, I argue that the aims referred to either do not support suffering or are better served by alleviating it. When the aims would be equally well served by enduring suffering and relieving it, the latter appears to be the preferable option, given that the distress a patient experiences has no positive intrinsic value. Indeed, as the suffering can be very distressing, it may not be worth bearing even if that was the best way to achieve the aims: the distress can sometimes be bad enough to outbalance the worth of achieving the goals. Having considered an objection to the effect that a patient can have a self-regarding moral duty to endure the distress she faces at the end of life, I conclude that the burden of proof is on the side of those who maintain that the suffering experienced at the end of life ought to be endured as a part of dying well.
A mourner’s success in making meaning of a loss has proven key in predicting a wide array of bereavement outcomes. However, much of this meaning-making process takes place in an interpersonal framework that is hypothesized to either aid or obstruct this process. To date, a psychometrically validated measure of the degree to which a mourner successfully makes meaning of a loss in a social context has yet to be developed. The present study examines the factor structure, reliability, and validity of a new measure called the Social Meaning in Life Events Scale (SMILES) in a sample of bereaved college students (N = 590). The SMILES displayed a two-factor structure, with one factor assessing the extent to which a mourner’s efforts at making meaning were invalidated (Social Invalidation subscale), and the other assessing the extent to which a mourner’s meaning-making process was validated (Social Validation subscale). The subscales displayed good reliability and construct validity in reference to several outcome variables of interest (complicated grief, general health, and post-loss growth), as well as related but different variables (social support and meaning made). The subscales also demonstrated group differences according to two demographic variables associated with complications in the mourning process (age and mode of loss), as well as incremental validity in predicting adverse bereavement outcomes over and above general social support. Clinical and research implications involving the use of this new measure are discussed.