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

A new integral management model and evaluation method to enhance sustainability of renewable energy projects for energy and sanitation services

Autonomous systems based on the use of renewable energy (RE) have proven suitable for providing energy and sanitation services to isolated communities. However, most of these projects fail due to managerial weaknesses. Designing an appropriate management model is a key issue for sustainability and it is especially complex when includes different RE technologies. This paper is aimed at developing a novel management model for RE projects to provide energy and sanitation services with any kind of technology. Moreover, a new method to evaluate the sustainability is proposed regarding technical, economic, social/ethical, environmental and institutional/organisational dimensions. The case study of Pucara (Peru) is presented, in which a RE project with six different technologies was implemented and the integral community management model was designed in 2011. The project sustainability was evaluated in 2013 and results showed that the management model has succeeded to strengthen sustainability, especially in the institutional/organisational aspects.The authors would like to thank the anonymous reviewers for their valuable comments, which have helped to enhance this paper. The authors are grateful for all the assistance and support provided by Practical Action-ITDG from Peru.Lillo Rodrigo, P.; Ferrer-Martí, L.; Fernández-Baldor, Á.; Ramírez, B. (2015). A new integral management model and evaluation method to enhance sustainability of renewable energy projects for energy and sanitation services. Energy for Sustainable Development. 29:1-12. doi:10.1016/j.esd.2015.08.003S1122

Rural electrification: utilities' chafe or challenge?

The earlier research on electricity supply to rural areas has tended to address the technical and financial performance of both grid connected and decentralised power systems and the socio-economic impact of electrification. However, this study has chosen to examine the impact of the developments and trends on the approach to rural electrification and its implications for developing countries in particular. The study includes a comprehensive historical analysis of rural electrification programmes implemented in both industrialised and developing countries. A general conclusion is that rural electricity supply has always been considerably more expensive than the supply to urban areas and, as a consequence, utilities have been reluctant to extend the service to rural areas. In most cases government subsidies were needed to make rural electrification programmes feasible. In many industrialised countries, and some developing countries, separate organisations were made responsible for the implementation of these programmes. These organisations have met with varying degrees of success in reaching customers. In particular small-scale private rural utilities have seldom proved to be successful. Evidence suggests that, from a development point of view, electrification should preferably be a component of an integrated rural development programme. The electrification of rural areas has traditionally been based on electricity supply from a central grid. However in the future, the electrification of rural areas in developing countries will be increasingly based on decentralised power facilities. In this respect it is also emphasised that small-scale independent power producers should be seen as fully fledged suppliers of electricity to the public grid. The all-round unsatisfactory performance of the electricity sector of several developing countries calls for urgent reforms. However the results of the historical analysis and recent experiences in industrialised countries with privatisation in the power sector suggest that developing countries should ask themselves the questions what is the minimum amount of power sector reform that is needed. The study reveals that political stability, autonomy, and an appropriate utility organisation which is based on an analysis of the business environment and contemporary management, are needed to successfully implement future rural electrification programmes

"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