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.

The reimbursement for expensive medicines: stakeholder perspectives on the SMA medicine nusinersen and the Dutch Coverage Lock policy.

BACKGROUND: The reimbursement for expensive medicines poses a growing challenge to healthcare worldwide. In order to increase its control over the costs of medicines, the Dutch government introduced the Coverage Lock (CL) policy in 2015. The CL postpones decisions regarding reimbursement of expensive medicines until detailed advice on i.e., cost-effectiveness has been given. The CL has been in place for six years, has raised many questions and concerns, but currently, no evaluation is known to the authors. A better understanding of the effects of the CL on all stakeholders involved may contribute to reflections on the CL process and help find ways to improve it. An evaluation of Dutch policy will also be relevant for other countries that aim to optimize reimbursement procedures for expensive treatments. To perform this evaluation, we focused on the CL procedure for the medicine nusinersen. Nusinersen is the first treatment for spinal muscular atrophy (SMA). Following EMA approval in May 2017, it was placed in the CL. The analysis of cost-effectiveness and added therapeutic value resulted in an advice for reimbursement limited to children younger than 9.5 years at the start of treatment; this was implemented from August 2018 onwards. METHODS: Qualitative stakeholder perspective analysis of the CL procedure focusing on nusinersen with 15 stakeholders. RESULTS: Stakeholders raised key issues of the CL based on their experience with nusinersen: emotional impact of the CL, duration of the CL procedure, appropriateness of the CL procedure for different types of medicines, transparency of the CL, a wish for patient-centred decision-making and the lack of uniformity of access to expensive treatments. DISCUSSION: Stakeholders supported measures to control healthcare expenses and to ensure reasonable pricing. They considered the delay in access to therapies and lack of procedural transparency to be the main challenges to the CL. Stakeholders also agreed that the interests of patients deserve more attention in the practical implementation of the reimbursement decision. Stakeholders suggested a number of adjustments to improve the CL, such as a faster start with conditional reimbursement programs to ensure access and intensify European collaboration to speed up the assessment of the medicine.

Lifelong versus not lifelong death wishes in older adults without severe illness: a cross-sectional survey.

BACKGROUND: Some older adults with a persistent death wish without being severely ill report having had a death wish their whole lives (lifelong persistent death wish; L-PDW). Differentiating them from older adults without severe illness who developed a death wish later in life (persistent death wish, not lifelong; NL-PDW) can be relevant for the provision of adequate help and support. This study aims to gain insight into the characteristics, experiences, and needs of older adults with a L-PDW versus older adults with a NL-PDW and into the nature of their death wishes. METHODS: In the Netherlands, in April 2019, a cross-sectional survey study was conducted among a large representative sample of 32,477 citizens aged 55 years and older. Respondents with a L-PDW (N = 50) were compared with respondents with a NL-PDW (N = 217) using descriptive statistics, Kruskal-Wallis tests, and Fisher's exact tests. RESULTS: Respondents with a L-PDW were relatively younger and less often had (step)children. They less often looked back on a good and satisfying life with many good memories and more often reported trauma. Older adults with a NL-PDW more often reported loss and bereavement. Overall, the groups showed a lot of similarities. Both groups reported a death wish diverse in nature, numerous health problems, and a variety of needs for help and support. CONCLUSIONS: Some of the differences we found between the groups might be particularly relevant for the provision of adequate help and support to older adults with a L-PDW (i.e., their past and trauma) and to older adults with a NL-PDW (i.e., their loss and bereavement). The heterogeneity of both groups and the diverse nature of their death wish indicate that careful assessment of the death wish, its background, and underlying needs is required to provide personalized help and support to older adults with a death wish.

Requests for euthanasia or assisted suicide of people without (severe) illness.

BACKGROUND: Some people request euthanasia or assisted suicide (EAS) even though they are not (severely) ill. In the Netherlands the presence of sufficient medical ground for the suffering is a strict prerequisite for EAS. The desirability of this 'medical ground'-boundary is currently questioned. Legislation has been proposed to facilitate EAS for older persons with "completed life" or "tiredness of life" in the absence of (severe) illness. OBJECTIVES: To describe the characteristics and motivations of persons whose requests for EAS in the absence of (severe) illness did not result in EAS and the decision-making process of medical professionals in these types of requests. METHODS: Analysis of 237 applicant records of the Dutch Euthanasia Expertise Center. We studied both the perspectives of applicants and medical professionals. FINDINGS: The majority of the applicants were women (73%) aged 75 years and older (79%). Applicants most often indicated physical suffering as element of suffering and reason for the request. Medical professionals indicated in 40% of the cases no or insufficient medical ground for the suffering. CONCLUSIONS: Physical suffering plays an important role in requests for EAS even for persons who are not (severely) ill. From the presence of physical suffering it does not necessarily follow that for medical professionals there is sufficient medical ground to comply with the 'medical ground'-boundary.

[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.

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.

Characterizing Adult Sleep Behavior Over 20 Years-The Population-Based Doetinchem Cohort Study.

Study Objectives: To describe sleep duration patterns of adults over a 20-year period; to compare sociodemographic, lifestyle, and health characteristics across these patterns; and to relate the patterns to sleep quality. Methods: The study population consisted of 3695 adults aged 20 to 59 years at baseline. Five measurements of self-reported sleep duration were used to compose seven patterns from 1987 to 2012: persistent short (≤6 hours), moderate (7-8 hours), or long (≥9 hours) sleep duration and several changing patterns (varying and became short, moderate, or long sleepers). Multinomial logistic regression analyses were used to compare characteristics across sleep duration patterns. Results: About 56% of the adults had persistent moderate sleep duration over 20 years. This group had a better sleep quality than the other groups. Of the adults who changed in their sleep duration (40%), 43% became a short sleeper. Sleep duration patterns that deviate from persistent moderate sleep duration were associated with physical inactivity during leisure time (odds ratios [ORs] and 95% confidence intervals [95% CIs] varied between 1.26 [1.04-1.53] and 1.58 [1.06-2.37]) and with poor self-rated health (ORs [95% CIs] varied between 1.50 [1.20-1.87] and 2.15 [1.48-3.12]). Conclusions: Nearly half of the adults did not have persistent moderate sleep duration over a 20-year period and more than one-sixth became short sleeper. This is reason for concern considering the adverse health status associated with short and long sleep duration. Leisure-time physical activity is a potential important target to prevent unfavorable changes in sleep duration over the life course.