Questioning the value of present life: The lived experience of older people who see no future for themselves.

OBJECTIVES: To describe the lived experience of older people who see no future for oneself in the context of aging and the possible development of a wish to die. METHODS: Data were collected from 34 interviews with people of 55-92 years. A phenomenological hermeneutical analysis was performed using crafted stories as an analytical device. RESULTS: Four intertwined constituents together with the essence of the phenomenon provide a layered description of what it means to see no future for oneself. In all constituents: 1) not sharing everyday life, 2) looking for new commitments, 3) facing present losses and future fears and 4) imagining not waking up in the morning, the essence losing zest for life seeped through their daily experiences. CONCLUSIONS: As their horizon of future possibilities is shrinking, older people in our study experience a loss of zest for life and start to questioning the value of their present lives. And although a certain languishing mood can be discovered, the phenomenon 'seeing no future for oneself' does not entail a wish to die.

Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals.

Background: Although support for family caregivers is an essential component of palliative care, routine provision of such support is often lacking. To improve support for family caregivers, we assessed current practice and influencing factors as perceived by healthcare professionals. Methods: A two-phase study was conducted including a survey exploring healthcare professionals' practice of supporting family caregivers in Western urbanized Netherlands in 2017, and focus groups exploring facilitators and barriers to supporting family caregivers in 2018. Focus group data were thematically analyzed with deductive coding based on the COM-B system. Results: Of the 379 survey respondents (response 11%), 374 were eligible (physicians, 28%; nurses, 64%; nurse assistants, 9%). The respondents practiced in academic hospitals (52%), general hospitals (31%), nursing homes (11%) and hospices (5%). They reported to always (38%), most of the time (37%), sometimes (21%) or never (5%) provide support to family caregivers during the illness trajectory. Respondents reported to always (28%), sometimes (39%), or never (33%) provide support after death. Four focus group discussions with 22 healthcare professionals elicited motivational facilitators and barriers to supporting family caregivers (e.g., relationship with family caregivers, deriving satisfaction from supporting them), and factors related to capability (e.g., (lacking) conversational skills, knowledge) and opportunity (e.g., (un)availability of protocols and time). Conclusions: Support for family caregivers, especially after the patient's death, is not systematically integrated in working procedures of healthcare professionals. The barriers and facilitators identified in this study can inform the development of an intervention aiming to enhance support for family caregivers.

Response shift after coronary revascularization.

PURPOSE: The aims of this study were to investigate (1) the extent to which response shift occurs among patients with coronary artery disease (CAD) after coronary revascularization, (2) whether the assessment of changes in health-related quality of life (HRQoL), controlled for response shift, yield more valid estimates of changes in HRQoL, as indicated by stronger associations with criterion measures of change, than without controlling for response shift, and (3) if occurrences of response shift are related to patient characteristics. METHODS: Patients with CAD completed the SF-36 and the Seattle Angina Questionnaire (SAQ7) at baseline and 3 months after coronary revascularization. Sociodemographic, clinical and psychosocial variables were measured with the patient version of the New York Heart Association-class, Subjective Significance Questionnaire, Reconstruction of Life Events Questionnaire (RE-LIFE), and HEXACO personality inventory. Oort's Structural Equation Modeling (SEM) approach was used to investigate response shift. RESULTS: 191 patient completed questionnaires at baseline and at 3 months after treatment. The SF-36 showed recalibration and reprioritization response shift and the SAQ7 reconceptualization response shift. Controlling for these response shift effects did not result in more valid estimates of change. One significant association was found between reprioritization response shift and complete integration of having CAD into their life story, as indicated by the RE-LIFE. CONCLUSION: Results indicate response shift in HRQoL following coronary revascularization. While we did not find an impact of response shift on the estimates of change, the SEM approach provides a more comprehensive insight into the different types of change in HRQoL following coronary revascularization.

[Persons aged 75 and above who have a death wish while not being seriously ill: who are these people?] / 75-plussers met een doodswens zonder dat ze ernstig ziek zijn.

OBJECTIVE: To provide insight into the prevalence of persistent death wishes without being severely ill among Dutch older persons aged 75 and above; to describe the characteristics and circumstances of this group; to improve knowledge on the nature of their death wishes. DESIGN: Cross-sectional study. METHOD: In 2019 we conducted a large survey among a representative sample of 32,477 Dutch citizens aged 55 and above from the TNS-NIPObase. The questionnaire was completed by 21,294 respondents in April 2019 (response rate 65.6%). This article comprises a subanalysis of the respondents aged 75 and above. RESULTS: Of all 3,141 respondents aged 75 and above, 56 were identified as having a persistent death wish and no severe illness (PDW-NSI). The weighted percentage representing the Dutch population indicates PDW-NSI among 2.07% of all older persons aged 75 and above in the Netherlands. Respondents with PDW-NSI had a lower level of education, were of lower social class and lived in highly urbanized areas more often. Important aspects enhancing the death wish were dependence on others, worrying, physical or mental deterioration, health problems and loneliness. The death wish was subject to change and the intensity varied over time. CONCLUSION: Of older persons aged 75 and above with PDW-NSI, a considerable part stays out of sight of healthcare professionals because they do not communicate about their death wish. This may challenge timely support. Carefully questioning the meaning and nature of the death wish is essential to understand the background and underlying needs of the persons concerned.

Still ready to give up on life? A longitudinal phenomenological study into wishes to die among older adults.

RATIONALE: There is a paucity of empirical studies exploring wishes to die (WTD) in older adults without a life-threatening disease or psychiatric disorder, especially on how these WTD evolve over time. OBJECTIVE: This study aims to deepen our understanding of living with a WTD by elucidating multifaceted trajectories of death wishes in older adults without a life-threatening disease or psychiatric disorder. METHODS: Interviews were conducted between 2013 and 2019 with Dutch men and women aged 70 and older who expressed a WTD (preferably at a self-chosen moment). Using a phenomenological, longitudinal analysis approach, 35 serial interviews were analyzed. RESULTS: This resulted in four thematic meanings following four trajectories, namely: 1) a realized WTD, facing the ultimate decision with both freedom and a sense of fate; 2) an intensifying WTD, reaching a deadlock; 3) a diminishing WTD, experiencing tentative space for new possibilities; and 4) a vanishing WTD, being surprised by an unexpected turn. In the cases examined, the individuals' WTD was characterized by ambivalence and subject to change over time. Fluctuating, often asynchronous patterns of physical, social, psychological, and existential distress were lived intertwined. The WTD should thus be understood as dynamic and unpredictable, often impacted by external circumstances. CONCLUSIONS: An important clinically relevant finding is that even persons with a pronounced WTD can experience openness to new possibilities, leading to a diminished or vanished WTD and/or desire to act on their WTD. Often such changes were related to (re-)establishment of connections with other people and/or society or with themselves. Since most research in this area is cross-sectional, the current longitudinal findings of this study are unique in providing insight into changes over time, thus contributing to the fields of death and suicide studies.

Euthanasia and Physician-Assisted Suicide in Patients With Multiple Geriatric Syndromes.

Importance: The Dutch Regional Euthanasia Review Committees (RTEs) reviewed and reported an increasing number of cases of euthanasia and physician-assisted suicide (EAS) requested by older people with multiple geriatric syndromes (MGS). Knowledge of the characteristics of cases of EAS for MGS is important to facilitate societal debate and to monitor EAS practice. Objective: To examine the accumulation of patient characteristics, geriatric syndromes, and other circumstances as reported in the case summaries of the RTEs that led to unbearable suffering associated with a request for EAS and to analyze the RTEs' assessments of these cases of EAS. Design, Setting, and Participants: A qualitative content analysis was conducted of all case summaries filed from January 1, 2013, to December 31, 2019, under the category MGS and published in a national open access database. These case summaries were selected by the RTEs from the total of 1605 reported cases of EAS in the category MGS. Results: The RTEs published 53 cases (41 [77%] female) under the category MGS. A total of 28 patients (53%) had always perceived themselves as independent, active, and socially involved. None of the patients suffered from life-threatening conditions. Multiple geriatric syndromes, such as visual impairment (34 cases [64%]), hearing loss (28 cases [53%]), pain (25 cases [47%]), and chronic tiredness (22 cases [42%]), were common. The request for EAS was often preceded by a sequence of events, especially recurrent falls (33 cases [62%]). Although physical suffering could be determined in all cases, the case descriptions found that suffering occurred on multiple dimensions, such as the loss of mobility (44 [83%]), fears (21 [40%]), dependence (23 [43%]), and social isolation (19 [36%]). Conclusions and Relevance: This qualitative study suggests that an accumulation of geriatric syndromes leading to a request for EAS is often intertwined with the social and existential dimension of suffering. This leads to a complex interplay of physical, psychological, and existential suffering that changes over time.

Ecological momentary assessment versus retrospective assessment for measuring change in health-related quality of life following cardiac intervention.

BACKGROUND: Measuring change in health-related quality-of-life (HRQoL) is important to assess the impact of disease and/or treatment. Ecological momentary assessment (EMA) comprises the repeated assessment of momentary HRQoL in the natural environment and is particularly suited to capture daily experiences. Our objective was to study whether change in momentary measures or retrospective measures of HRQoL are more strongly associated with criterion measures of change in HRQoL. Twenty-six coronary artery disease patients completed momentary and retrospective HRQoL questionnaires before and after coronary revascularization. Momentary HRQoL was assessed with 14 items which were repeatedly presented 9 times a day for 7 consecutive days. Each momentary assessment period was followed by a retrospective HRQoL questionnaire that used the same items, albeit phrased in the past tense and employing a one-week time frame. Criterion measures of change comprised the New York Heart Association functioning classification system and the Subjective Significance Change Questionnaire. Regression analysis was used to determine the association of momentary and retrospective HRQoL change with the criterion measures of change. RESULTS: Change according to momentary HRQoL items was more strongly associated with criterion measures of change than change according to retrospective HRQoL items. Five of 14 momentary items were significantly associated with the criterion measures. One association was found for the retrospective items, however, in the unexpected direction. CONCLUSION: Momentary HRQoL measures better captured change in HRQoL after cardiac intervention than retrospective HRQoL measures. EMA is a valuable expansion of the armamentarium of psychometrically sound HRQoL measures.

Prevalence and characteristics of older adults with a persistent death wish without severe illness: a large cross-sectional survey.

BACKGROUND: Some older persons develop a persistent death wish without being severely ill, often referred to as "completed life" or "tiredness of life". In the Netherlands and Belgium, the question whether these persons should have legal options for euthanasia or physician-assisted suicide (EAS) is intensely debated. Our main aim was to investigate the prevalence and characteristics of older adults with a persistent death wish without severe illness, as the lack of this knowledge is a crucial problem in de debate. METHODS: We conducted a survey among a representative sample of 32,477 Dutch citizens aged 55+, comprising questions about health, existential issues and the nature of the death wish. Descriptive statistics were used to describe the group with a persistent death wish and no severe illness (PDW-NSI) and several subgroups. RESULTS: A total of 21,294 respondents completed the questionnaire (response rate 65.6%). We identified 267 respondents (1.25%) as having a persistent death wish and no severe illness (PDW-NSI). PDW-NSI did not only occur among the oldest old. Although qualifying themselves as "not severely ill", those with PDW-NSI reported considerable health problems. A substantial minority of the PDW-NSI-group reported having had a death wish their whole lives. Within the group PDW-NSI 155 (0.73%) respondents had an active death wish, of which 36 (0.17% of the total response) reported a wish to actually end their lives. Thus, a death wish did not always equal a wish to actually end one's life. Moreover, the death wishes were often ambiguous. For example, almost half of the PDW-NSI-group (49.1%) indicated finding life worthwhile at this moment. CONCLUSIONS: The identified characteristics challenge the dominant "completed life" or "tiredness of life" image of healthy persons over the age of 75 who, overseeing their lives, reasonably decide they would prefer to die. The results also show that death wishes without severe illness are often ambiguous and do not necessarily signify a wish to end one's life. It is of great importance to acknowledge these nuances and variety in the debate and in clinical practice, to be able to adequately recognize the persons involved and tailor to their needs.

Gender differences in quality of life in coronary artery disease patients with comorbidities undergoing coronary revascularization.

In comparison to male patients with coronary artery disease, female patients suffer from more comorbidities, experience symptoms of coronary artery disease differently and report poorer health-related quality of life (HRQoL) after coronary revascularization. However, there is limited data on the impact of comorbidity burden on the recovery in HRQoL in female and male patients. We investigated the impact of comorbidity burden on the change in HRQoL following coronary revascularization in female patients versus male patients. 230 patients (60 female) with coronary artery disease were assessed before, and two weeks, three months and six months after coronary revascularization. Disease-specific HRQoL was measured with the Short-Form Seattle Angina Questionnaire. Physical and mental health was measured with the Short-Form Health Survey. Comorbidity burden was assessed by the total number of identified comorbidity conditions and by the Charlson comorbidity score. Linear mixed models were used to estimate the effects of time, gender and comorbidity burden on HRQoL. Whereas HRQoL improved after coronary revascularization in all patients, female patients reported poorer physical health and disease-specific HRQoL and their physical health improved more slowly than male patients. A higher comorbidity burden was related with poorer physical health and disease-specific HRQoL in male patients, but not in female patients. A higher comorbidity burden was associated with slower improvement in HRQoL for both female and male patients. Female patients reported poorer HRQoL and their physical health improved more slowly after coronary revascularization, irrespective of comorbidity burden. Higher comorbidity burden was associated with poorer physical health and disease-specific HRQoL in male patients only. Our results indicate that female and male patients recover differently after coronary revascularization. These findings highlight the importance of comorbidity- and gender-specific approaches for evaluating coronary artery disease and coronary revascularization procedures.

Narrative meaning making and integration: Toward a better understanding of the way falling ill influences quality of life.

Falling seriously ill is often experienced as a life event that causes conflict with people's personal goals and expectations in life and evokes existential questions. This article presents a new humanities approach to the way people make meaning of such events and how this influences their quality of life. Incorporating theories on contingency, narrative identity, and quality of life, we developed a theoretical model entailing the concepts life event, worldview, ultimate life goals, experience of contingency, narrative meaning making, narrative integration, and quality of life. We formulate testable hypotheses and describe the self-report questionnaire that was developed based on the model.

Influence of response shift and disposition on patient-reported outcomes may lead to suboptimal medical decisions: a medical ethics perspective.

BACKGROUND: Patient-reported outcomes (PROs) are frequently used for medical decision making, at the levels of both individual patient care and healthcare policy. Evidence increasingly shows that PROs may be influenced by patients' response shifts (changes in interpretation) and dispositions (stable characteristics). MAIN TEXT: We identify how response shifts and dispositions may influence medical decisions on both the levels of individual patient care and health policy. We provide examples of these influences and analyse the consequences from the perspectives of ethical principles and theories of just distribution. CONCLUSION: If influences of response shift and disposition on PROs and consequently medical decision making are not considered, patients may not receive optimal treatment and health insurance packages may include treatments that are not the most effective or cost-effective. We call on healthcare practitioners, researchers, policy makers, health insurers, and other stakeholders to critically reflect on why and how such patient reports are used.

The dynamics in health-related quality of life of patients with stable coronary artery disease were revealed: a network analysis.

OBJECTIVE: Health-related quality of life (HRQoL) is a dynamic construct. Experience sampling methods (ESM) are becoming increasingly popular to capture within-person fluctuations in HRQoL. An emerging approach to analyze such momentary data is network analysis. Our aim was to explore the use of network analysis for investigating the dynamics within individual's HRQoL. STUDY DESIGN AND SETTING: We analyzed ESM data of 30 patients with stable coronary artery disease (CAD). Patients completed eight HRQoL items representing four scales (i.e., positive mood, negative mood, CAD symptoms, and physical state) at nine times a day for seven consecutive days. Network analysis was used to analyze the data at group level to estimate the average HRQoL dynamics and at patient level to estimate HRQoL dynamics of individual patients. RESULTS: Group-level analysis showed that, on average, feeling "tired" and feeling "anxious" are the most central items in patients' HRQoL. Patient-level analysis revealed differences in patients' network structures, indicating within-person differences in HRQoL dynamics. CONCLUSION: This study is one of the first to apply network analysis to momentary HRQoL data. To the extent that network models are meaningful representations of HRQoL dynamics, they may help deepening our insight into experienced HRQoL and provide targets for personalized treatment.

Modes of relating to contingency: An exploration of experiences in advanced cancer patients.

OBJECTIVE: Throughout their lives, people are confronted with unexpected life events, which can be difficult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denying, acknowledging, and "encounter with the Other." In the present article, we aim to trace these theoretical distinctions in real-life experiences of patients. METHOD: We analyzed 45 interviews using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomized controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual counselors from six hospitals in the Netherlands conducted the interviews from July of 2014 to March of 2016. All 45 patients had advanced cancer. RESULTS: We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting, and receiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more conscious life. SIGNIFICANCE OF RESULTS: Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.

The effect of spiritual interventions addressing existential themes using a narrative approach on quality of life of cancer patients: a systematic review and meta-analysis.

OBJECTIVE: The aim of this study was to examine the effect of spiritual interventions on quality of life of cancer patients. METHODS: We conducted our search on June 6, 2014 in Medline, PsycINFO, Embase, and PubMed. All clinical trials were included that compared standard care with a spiritual intervention that addressed existential themes using a narrative approach. Study quality was evaluated by the Cochrane Risk of Bias Tool. RESULTS: A total of 4972 studies were identified, of which 14 clinical trials (2050 patients) met the inclusion criteria, and 12 trials (1878 patients) were included in the meta-analysis. The overall risk of bias was high. When combined, all studies showed a moderate effect (d) 0.50 (95% CI = 0.20-0.79) 0-2 weeks after the intervention on overall quality of life in favor of the spiritual interventions. Meta-analysis at 3-6 months after the intervention showed a small insignificant effect (0.14, 95% CI = -0.08 to 0.35). Subgroup analysis including only the western studies showed a small effect of 0.17 (95% CI = 0.05-0.29). Including only studies that met the allocation concealment criteria showed an insignificant effect of 0.14 (95% CI = -0.05 to 0.33). CONCLUSIONS: Directly after the intervention, spiritual interventions had a moderate beneficial effect in terms of improving quality of life of cancer patients compared with that of a control group. No evidence was found that the interventions maintained this effect up to 3-6 months after the intervention. Further research is needed to understand how spiritual interventions could contribute to a long-term effect of increasing or maintaining quality of life.