Anne Goossensen

Experiences and motivations underlying wishes to die in older people who are tired of living: a research area in its infancy.

The wish to die in older people who are tired of living and the possibilities to organize death are currently being discussed within the debate on self-determination and physician-assisted suicide. Until now insight into the experiences and thoughts of people who are tired of life but not suffering from a severe depression or a life-threatening disease is lacking. Studies focussing specifically on this topic are rare. This review provides an overview of this research area in its infancy. The existential impact of age-related loss experiences play an important role in developing a wish to die. Other influencing factors are: personal characteristics, biographical factors, social context, perceptions and values. Further research to experiences and motivations underlying these specific age-related wishes to die and the existential impact of the loss-experiences seems necessary to deepen the understanding of this group of older people and for the development of policy and good care.

Caught between intending and doing: older people ideating on a self-chosen death

Objectives The aim of this paper is to provide insight into what it means to live with the intention to end life at a self-chosen moment from an insider perspective. Setting Participants who lived independent or semidependent throughout the Netherlands. Participants 25 Dutch older citizens (mean age of 82 years) participated. They were ideating on a self-chosen death because they considered their lives to be no longer worth living. Inclusion criteria were that they: (1) considered their lives to be ‘completed’; (2) suffered from the prospect of living on; (3) currently wished to die; (4) were 70 years of age or older; (5) were not terminally ill; (6) considered themselves to be mentally competent; (7) considered their death wish reasonable. Design In this qualitative study, in-depth interviews were carried out in the participants’ everyday home environment (median lasting 1.56 h). Verbatim transcripts were analysed based on the principles of phenomenological thematic analysis. Results The liminality or ‘in-betweenness’ of intending and actually performing self-directed death (or not) is characterised as a constant feeling of being torn explicated by the following pairs of themes: (1) detachment and attachment; (2) rational and non-rational considerations; (3) taking control and lingering uncertainty; (4) resisting interference and longing for support; (5) legitimacy and illegitimacy. Conclusions Our findings show that the in-between period emerges as a considerable, existential challenge with both rational and non-rational concerns and thoughts, rather than a calculative, coherent sum of rational considerations. Our study highlights the need to take due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made in order to develop careful policy and support for this particular group of older people.

Disconnectedness from the here-and-now: a phenomenological perspective as a counteract on the medicalisation of death wishes in elderly people

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people.

Can quality from a care ethical perspective be assessed? A review:

Background: Ethics-of-care theories contain important notions regarding the quality of care; however, until now, concrete translations of the insights into instruments are lacking. This may be a result of the completely different type of epistemology, theories and concepts used in the field of quality of care research. Objectives: Both the fields of ‘ethics of care’ and ‘quality of care’ aim for improvement of care; therefore; insights could possibly meet by focusing on the following question: How could ethics-of-care theories contribute to better quality in care at a measurement level? This study reviews existing instruments with the aim of bridging this gap and examines the evidence of their psychometric properties, feasibility and responsiveness. Research design: A systematic search of the literature was undertaken using multiple electronic databases covering January 1990 through May 2012. Method and findings: Of the 3427 unique references identified, 55 studies describing 40 instruments were selected. Using a conceptual framework, an attempt was made to distinguish between related concepts and to group available instruments measuring different types of concepts. A total of 13 instruments that reflect essential aspects of ethics-of-care theory were studied in greater detail, and a quality assessment was conducted. Conclusion: Three promising qualitative instruments were found, which follow the logic of the patient and take their specific context into account.

Ethical considerations on the value of patient knowledge in long-term care A qualitative study of patients suffering from Korsakoff ’s syndrome

Aim: This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge. Background: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not been researched to date. Method: Data from six in-depth interviews were analysed concurrently through the constant comparative method. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the research process. Findings: Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. Conclusion: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staff in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome.

Evaluating care from a care ethical perspective:: A pilot study

Background: Care ethical theories provide an excellent opening for evaluation of healthcare practices since searching for (moments of) good care from a moral perspective is central to care ethics. However, a fruitful way to translate care ethical insights into measurable criteria and how to measure these criteria has as yet been unexplored: this study describes one of the first attempts. Objective: To investigate whether the emotional touchpoint method is suitable for evaluating care from a care ethical perspective. Research design: An adapted version of the emotional touchpoint interview method was used. Touchpoints represent the key moments to the experience of receiving care, where the patient recalls being touched emotionally or cognitively. Participants and research context: Interviews were conducted at three different care settings: a hospital, mental healthcare institution and care facility for older people. A total of 31 participants (29 patients and 2 relatives) took part in the study. Ethical considerations: The research was found not to be subject to the (Dutch) Medical Research Involving Human Subjects Act. Findings: A three-step care ethical evaluation model was developed and described using two touchpoints as examples. A focus group meeting showed that the method was considered of great value for partaking institutions in comparison with existing methods. Reflection and discussion: Considering existing methods to evaluate quality of care, the touchpoint method belongs to the category of instruments which evaluate the patient experience. The touchpoint method distinguishes itself because no pre-defined categories are used but the values of patients are followed, which is an essential issue from a care ethical perspective. The method portrays the insider perspective of patients and thereby contributes to humanizing care. Conclusion: The touchpoint method is a valuable instrument for evaluating care; it generates evaluation data about the core care ethical principle of responsiveness.

The social-political challenges behind the wish to die in older people who consider their lives to be completed and no longer worth living

In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on ‘completed life in old age’ should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.

Emerging ritual practices in pluralistic society: A comparison of six non-religious European celebrant training programmes

ABSTRACT In Western societies, ritual practices are shifting from traditional, set-piece rites towards a more active, dynamic and individualized form of ritualizing. This raises questions regarding both contemporary spirituality and non-religious celebrancy. In this study, six European non-religious training programmes are analyzed in order to explore this upcoming field. Following a theoretical introduction on ritualizing in contemporary society, a comparison of celebrant training programmes is presented that addresses (1) how ‘non-religious’ celebrancy is defined, (2) what kinds of ritual skills are trained in the programmes and (3) what kinds of challenges are faced. The outcomes of this study are a clarification of the term ‘non-religious celebrancy’ and of the core competencies for ritual work in pluralistic society.

Ethical uneasiness and the need for open-ended reflexivity: the case of research into older people with a wish to die

Abstract This article focuses on research ethics in highly intimate research with possible impact on life and death. In order to stimulate an open-ended dialogue about research ethics, we reflect on four ethical challenges that came up during our research into older people with a wish to die. Drawing on our experiences, we discuss (1) the possibly confirming influence of our research on the death wish (moral experience of whether or not to disregard responsibility); (2) the suggested duty to intervene (moral experience of whether or not to compromise the person’s autonomy); (3) the researcher’s authority and power over the data (moral experience of threatening a person’s self-narrative) and (4) the dilemma of intimacy (moral experience of encountering the tragic). For guidance in addressing these challenges, we draw upon work on research ethics from phenomenological and care ethics scholars, as well as from those writing about relational ethics in health research. We suggest that being open about ethical uneasiness is important, because in most cases of a grey area, there are only open-ended answers needing an enquiring mind, rather than clear and fixed guidelines. Acknowledgement of ethical uneasiness and open-ended reflexivity are indispensable to constitute a morally good research practice.

“Purely for You”: Inmates’ Perceptions of Prison Visitation by Volunteers in the Netherlands:

Research suggests that prison visitation by volunteers may significantly reduce the risk of recidivism. Community volunteers offer sustained, prosocial support to inmates which may account for these beneficial effects. However, the question of how inmates themselves evaluate volunteer visitation has hardly been studied. This study explores how inmates of Dutch prisons who receive one-on-one volunteer visits experience and value these visits. To that end, semistructured interviews were conducted with 21 inmates across six penitentiaries. These show that the value of volunteer visitation for inmates has to be understood in terms of a human-to-human encounter. Visits by volunteers provide inmates with rare opportunities to have a confidential conversation, away from the harshness of the usual prison life. Furthermore, inmates perceive volunteer visitation as beneficial beyond the actual visits. Inmates draw hope, strength, or self-respect from the conversations; they see volunteers as role models and develop a more positive view of the future. Two potential obstacles to beneficial volunteer visitation were detected: lack of chemistry between volunteer and inmate and imposition of worldview beliefs by volunteers.