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.

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.

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.