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.
Though the dying process may offer an opportunity for truth telling and atonement, reconciliation and expressions of love, it may also allow a space for life to go on just as it was. If we’re lucky, we’ll continue to live as we always did until the very end.
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need.
Objective:This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers.
Design:Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close.
Setting/Participants:Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York.
Results: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants (P = .022). Exit interviews conveyed satisfaction with the intervention.
Conclusions: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes.
Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes.
Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care.
Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer.
Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety.
Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant.
Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
L'histoire est l'étude du rapport entre l'homme et le temps ou, plus précisément, le rapport entre les sociétés et la durée. Depuis plus de soixante ans, je suis donc professionnellement confronté au temps. Depuis plus longtemps, peut-être, parce que si l'histoire m'attirait dans ma jeunesse, c'est sans doute parce que déjà le temps m'obsédait : le temps de la vie, la vie hors du temps. Forcément, ce temps qu'étudient les historiens est un temps passé, qui a laissé des traces. Pour comprendre les vivants, l'historien fréquente inévitablement les morts.