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

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 debat

"Completed life": Older adults who have a death wish without being severely ill

This dissertation is about older adults who have a death wish without being severely ill. Some older adults may come to the conclusion that even though they are not severely ill, the quality and the meaning of their life has deteriorated to such extent that they do no longer see a future for themselves and prefer death over life, leading to a death wish and sometimes also to a wish for a self-directed death. One commonly used expression for this experience is “completed life”. In the beginning of 2019 when the work for this dissertation started, there was an ongoing public and political debate about “completed life”. The debate centered around the question whether older adults with “completed life” who are not eligible for EAS but wish for a self-directed death should have legal options for assisted dying. At the same time, due to the limited empirical knowledge that was available, arguments for and against offering such legal options were mainly ideological and theoretical in nature. For well-informed policymaking on how the death wish of older adults with “completed life” can be appropriately responded to, more empirical knowledge was required. There was insufficient empirical knowledge on how many older adults have a death wish without being severely ill, who these older adults are, what the background of their death wishes is, and how their requests for EAS are handled by medical professionals. This dissertation aimed to address this knowledge gap by answering the following research questions: 1. What is the prevalence of older adults with a death wish without severe illness? 2. How can older adults with a death wish without severe illness be described in terms of characteristics and circumstances? 3. What is the background of the death wish of older adults without severe illness considering the nature of the death wish, motivations and needs behind the death wish, and communication about the death wish? 4. How are requests for euthanasia and assisted suicide (EAS) of older adults with a death wish without severe illness decided upon by Euthanasia Expertise Center (EEC) and assessed by the Regional Euthanasia Review Committees (RTEs)? 5. In what ways can be appropriately responded to the death wish of older adults without severe illness in light of empirical findings

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.</p

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

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-022-03592-5