Atteint d’un cancer qui ne guérira pas, Ethan doit s’organiser. Il ne lui reste que peu de temps. Que doit-il mettre en ordre rapidement ? Et surtout, qu’a-t-il envie de faire ? Comment va-t-il occuper le peu de temps qu’il lui reste ? Après avoir établi une liste de dix rêves, Matthieu, son meilleur ami, va tout faire pour l’aider à les réaliser. À travers deux continents et quatre pays différents et au fil des différentes rencontres qui croiseront son chemin, Ethan va apprendre à accepter la maladie. Prêt à tout pour que sa fin de vie ne soit pas vaine, il dépassera ses propres limites... Avant que le cancer ne gagne.
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This paper explores the concept of the completed life outlined in recent writing in the Netherlands on euthanasia and assisted suicide and its implications for ageing studies. Central to this theme is the basic right of people to self-determine the length of their later life, linked with the subsidiary right to assistance in achieving such self-determination. Although the notion of weariness with life has a long history, the recent advocacy of a self-limited life seems shaped by the new social movements presaged upon individual rights together with what might be called a distinctly third-age habitus, giving centre stage to autonomy over the nature and extent of a desired later life, including choice over the manner and timing of a person's ending. In exploring this concept, consideration is given to the notion of a ‘right to die’, ‘rational suicide’ and the inclusion of death as a lifestyle choice. While reservations are noted over the unequivocal good attached to such self-determination, including the limits to freedom imposed by the duty to avoid hurt to society, the article concludes by seeing the notion of a completed life as a challenge to traditional ideas about later life.
La question du sens de la vie se pose autant au jeune qu’à l’ancien, dès lors qu’il expérimente sa finitude par une quelconque expérience de mort. Pour explorer la question avec un certain recul, étudions la mort et le suicide à différentes échelles. Si nous devions comparer le suicide à une des morts cellulaires, peut-être que nous le comparerions à l’apoptose en tant qu’elle est réalisée par la cellule elle-même. À l’échelle animale, la survie suit la loi du plus fort ou du plus intelligent. À l’échelle anthropologique, les civilisations survivent dans l’illusion de leur immortalité. Il est certain que le suicide est un acte des plus intimes et peut, à cet égard, être considéré comme un acte de liberté puisqu’il soulage la perception du corps de toute loi physique, la perception étant abolie par le décès. La fascination pour le suicide s’appuie sur une exploration intellectuelle, une recherche de réponse absolue en opposition à tout relativisme, qui paradoxalement va prendre corps dans l’anéantissement. En période de pandémie et de confinement, l’humanité fait l’expérience de sa finitude. Le confinement a réinstallé un sentiment de solitude dans une société qui vit d’une hypercommunication permanente. Dans ce texte, l’auteur démontre que le suicide doit être évité parce qu’il est un non-sens autant pour l’individu que pour la collectivité. Alors, vivre le handicap tout autant que la vieillesse devrait être plus valorisé, et des politiques de santé publique contre les causes menant au suicide devraient devenir des priorités de l’État. Finalement, loin d’une pathologisation du suicide, la question de reconnaître juridiquement le droit au suicide (non assisté) pour les personnes le réussissant doit être posée.
The WHO has included the spiritual dimension in its definition of palliative care since 1990, but this dimension is frequently confused with notions of religion. Yet, the spiritual suffering experienced by palliative care patients is primarily a matter of existential suffering. The objective of this study was to examine the ways in which the existential dimension was manifested in the experiences of those present in a palliative care unit. This anthropological monograph was conducted in a palliative care unit in a French University Hospital. The existential dimension appears to reside in the connections between individuals and the proximity of death appears to shed new light on the meaning of life. The mirror effect of death on life, could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others, which offers new insight into forms of solidarity and social organisation.
CONTEXT: The will to live is an important factor to consider in the context of providing resource-oriented palliative care. Until now, there has been no major review of the existing research on this subject.
OBJECTIVES: The primary objective of this study is to summarize the state of research concerning instruments that assess the will to live. The secondary objective is to explore the theoretical models and psychometric properties of these instruments, in studies where these instruments were initially presented. The tertiary objective is to identify, among all studies where these instruments have been used, the intensity of the will to live and factors associated with it.
METHODS: We conducted a scoping review, including studies that were designed to assess the will to live among participants in all settings. Records were systematically searched from seven bibliographic databases with no date limitations up to August 2020.
RESULTS: Of the 3078 records screened, 281 were examined in detail and 111 were included in the synthesis. A total of 25 different instruments quantitatively assessing the will to live are presented. Most are single-question tools and rate intensity. The underlying concepts and psychometric properties are incompletely explained. Lack of cross-referencing is apparent. The intensity of the will to live is high, even among people with significant health impairment, and is frequently associated with different factors, such as resilience and quality of life.
CONCLUSION: A considerable yet unconnected body of studies assesses the will to live. Its assessment in clinical routine could promote resource-oriented, patient-centered care.
OBJECTIVE: The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs' disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.
METHOD: Thirteen YAs (ages 23-38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.
RESULTS: Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs' participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.
SIGNIFICANCE OF RESULTS: Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.
BACKGROUND: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (= 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these.
METHODS: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach.
RESULTS: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes.
CONCLUSIONS: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans.
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
Vieillir demande de construire de nouvelles normes de vie et de nouvelles valeurs. Cela exige d'être soi, d'avoir le temps et son temps à soi. Les différences du durée entre l'état normal et la crise pathologique tendent à s'amenuiser, et les crises sont de plus en plus fréquentes. C'est le rapport au temps et aux normes de vie qui est profondément modifié quand on vieillit. Réfléchir à la hierarchisation de ses désirs, c'est être conscient de ce qui est essentiel pour soi et ce qui l'est moins.
OBJECTIVES: Subjective well-being has been associated with decreased work burnout and elevated work engagement. We investigated the impact of hope and meaning in life on subjective well-being among workers in a hospice care setting. Comparison was made to health-care workers in a rehabilitation unit.
METHODS: Thirty-five hospice care workers were surveyed and their responses compared with those of 36 rehabilitation workers. Survey instruments measuring hope, meaning in life, work engagement, and satisfaction with life were utilized.
RESULTS: Individuals working in a hospice care center have significantly higher levels of work engagement than their counterparts in rehabilitation. For both groups, hope was significantly related to subjective well-being. For hospice care but not rehabilitation workers, meaning in life was also related to subjective well-being. Multivariate analysis showed that hope and meaning in life were independent factors predicting subjective well-being in hospice care workers.
SIGNIFICANCE OF RESULTS: Hospice care workers are highly engaged in their work despite the challenging nature of their work. What characterizes these workers is a level of subjective well-being that is related to both meaning in life and hope. Maintaining a high level of subjective well-being may be an important factor in preventing burnout among those working in hospice care settings.
This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration (CANH) at the end of life. This case raises important ethical and legal questions regarding a third person's right to judge the value of another person's life and the concept of 'wrongful life'. In our brief report, we discuss the concepts of the 'value of life' and wrongful life, which were evoked by the court, and how these concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment (LST). However, it is unclear to what extent physicians' decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the 'safe' option for the physician, and hence, as always appropriate.
L'auteur cherche à répondre à la souffrance psychique et existentielle de ses patients. Pour se faire, il utilise les théories de Viktor Frankl car ce psychiatre a consacré toute sa carrière à une recherche empirique sur le sens de la vie.
Background: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries.
Objectives: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life.
Methods: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life.
Results: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001).
Conclusion: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.
La notion de vie accomplie est purement subjective, la réalité se présente en continuum de propositions successives qui, chacune, fait rebondir la vie. En la formulant, la personne se transforme en observateur d'elle-même, se débouble et génére une représentation d'elle-même qu'elle peut à tout temps modifier. C'est là que l'écoute d'un autre trouve toute sa place : décider que sa vie est accomplie ne saurait donc être une réflexion solitaire, mais délibérée sous le regard et à l'abri de la présence de l'autre.
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified "best practices" for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.
The combination of aging and losing their only adult child challenges an increasing number of older adults in China. Current literature primarily focuses on older parents' bereavement but seldom examines their effort to cope with subsequent life changes brought about by only-child loss. This study explores how older parents in Shanghai who lost their only adult child restore their lives and prepare for future care. Twenty-four older adults were purposively sampled and participated in face-to-face, in-depth interviews. The findings suggest that participants tried to restore their lives by rationalizing grief and expanding their social networks. Despite their losses, participants remained in favor of family caregiving and reluctantly prepared for future care. Their ambivalent attitudes toward government support call for caution in approaches to service delivery.