Understanding regional variation in euthanasia using geomedical frameworks: a critical ethical reflection.

Considerable geographical variation in the uptake of euthanasia has been reported: some municipalities in the Netherlands have a 25 times higher euthanasia rate than other municipalities. Current 'geomedical' frameworks for interpreting practice variation in health care utilization seem inadequately tailored to understand regional variation in morally controversial procedures such as euthanasia. The aim of this conceptual article is threefold: i) to add relevant medical ethical principles to current frameworks; ii) to provide a four-step ethical-geomedical model for the interpretation of geographical differences in the utilization of health care in general and for ethically controversial treatments in specific; iii) to gain better understanding of the existing geographical variation in the incidence of euthanasia by using this framework in our analysis.

A family affair: Repeated interviews with people with dementia and a euthanasia wish and their families.

This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one's euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again.

Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it.

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping.

Commentary: Can an effective end-of-life intervention for advanced dementia be viewed as moral?

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding.

Happiness in Hospice Care in The Netherlands: A Case Study Design.

Happiness is central in spirituality but has hardly been explored in palliative care. The objective of this study is to explore happiness in hospice care in the Netherlands. A case study design consisting of participatory observations and semi-structured interviews was used.

'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary.

Method: We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations.

Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands.

Background: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied.

Aim: To explore the perspectives of parents on the assessment of QoL of their children.

Challenges in pastoral care practice in euthanasia: A concept mapping study among Dutch protestant pastors.

This study explores the various difficulties that protestant pastors experience in the context of care for parishioners with a wish for euthanasia. In a reproducible and non-subjective way, using the concept mapping method, we cluster and rank-order 600 elements that pastors had mentioned as "difficult in caring for parishioners with a death wish" in an earlier survey study. The three clusters of items ranked as most difficult are connected with inappropriate care, doubts whether euthanasia in specific circumstances is justified, and disagreements between pastor and parishioner, including the emotional burden arising from those disagreements.

The perceived impact of being a chaplain-researcher on professional practice.

As research has become part of chaplaincy, many chaplains become involved in research, often in the double-role of chaplain-researcher. Despite the increase of involvement in research, how conducting research benefits chaplains' professional care for clients has not been studied. The present study aimed to describe how chaplains perceive the impact of participation in the Dutch Case Studies Project (CSP) on their professional expertise and positioning in the institution.

Care and support for persons with profound intellectual and multiple disabilities without parents: A qualitative exploration.

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents.

Aim: To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD.

"I hope I'll outlive him": A qualitative study of parents' concerns about being outlived by their child with profound intellectual and multiple disabilities.

Background: The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns.

Method: We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents' concerns about being outlived by their child.

The ethics of euthanasia in dementia: A qualitative content analysis of case summaries (2012-2020).

Background: The practice of euthanasia in dementia has thus far been described both in terms of its empirical patient characteristics and its ethical questions. However, 40 new cases have been published since the last study.

Methods: A qualitative content analysis of all 111 Dutch case summaries of euthanasia in dementia patients between 2012 and 2020, selected from the total of 1117 cases published by the Regional Euthanasia Review Committees (RTE).

Parents' views on medical decisions related to life and death for their ageing child with profound intellectual and multiple disabilities: A qualitative study.

Background: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However, little is known about how parents make such decisions for their ageing child.

Aim: Explore parents' views on medical decisions related to life and death for their ageing child with PIMD.

Addressing spiritual needs in palliative care: proposal for a narrative and interfaith spiritual care intervention for chaplaincy.

Although many recognize the importance of addressing the spiritual domain in palliative care, empirically grounded interventions designed to alleviate spiritual needs for patients in palliative care are remarkably scarce. In this paper we argue that the development of such interventions for chaplains is important in order to improve spiritual care in a (post)secular and religiously plural context. We therefore propose an interfaith chaplain-led spiritual care intervention for home-based palliative care that addresses patients' spiritual needs.

Siblings' and parents' perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study.

Background: Since the life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing, siblings may take over care/support roles from their parents.

Method: To explore how parents and siblings of persons with PIMD view siblings' role regarding future care/support for their family member, we interviewed eight parents and 13 siblings of seven persons with PIMD and analysed the data thematically.

Results: While some parents expected that a future care/support role would burden the sibling unfairly, most siblings anticipated such a role and reported no concerns about this future responsibility.

The professionalization of chaplaincy .

Chaplaincy has become increasingly professionalized in response to both the standardization in healthcare and the changing religious landscape. Whereas several studies have paid attention to the professionalization of chaplaincy as a whole, no research has been found that describes the implications for individual chaplains. The present article describes the professionalization of Dutch chaplains in the last two decades.

A spiritual care intervention for chaplains in home-based palliative care: design of a mixed-methods study investigating effects on patients' spiritual wellbeing.

Recently, the call for chaplains to become 'research literate' has been recognized by various scholars as well as by practitioners in the field. However, papers that present and discuss the study design and provide guidance on the methodology of chaplaincy research are scarce. The aim of this study is to present the design of a mixed-methods study that investigates the impact of a spiritual care intervention on patients' spiritual wellbeing in palliative, home-based care.

Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach.

Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), which makes it necessary to involve others. In current approaches, these 'others' are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers' knowledge on the QoL of a person with PIMD a theoretical basis that values these experiences.

Euthanasia in the Netherlands: a claims data cross-sectional study of geographical variation.

Background: The annual incidence of euthanasia in the Netherlands as a percentage of all deaths rose from 1.9% in 1990 to 4.4% in 2017.

Effects of Nurses' Screening of Spiritual Needs of Hospitalized Patients on Consultation and Perceived Nurses' Support and Patients' Spiritual Well-being.

There is an undeniable relationship between spirituality and health, and taking a spiritual history is a simple way to increase the focus on spiritual care. This is a pre/posttest intervention study. Questionnaires were administered before implementation of a spiritual assessment (pretest, n = 106), and afterward (posttest, n = 103).

Autonomy and its vulnerability: Ricoeur's view on justice as a contribution to care ethics.

We examine an article of Paul Ricoeur on autonomy and vulnerability. Ricoeur presents the two notions in the field of justice as intricately woven into each other. He analyzes their interdependence on three levels of human agency.