Older people on self-chosen death

Self-chosen death by elderly

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

Els van Wijngaarden, Carlo Leget and Anne Goossensen (( University of Humanistic Studies, Utrecht, Netherlands))

Abstract

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:[pullquote]”I don’t want to die, but my life is simply unliveable.” [/pullquote]

  1. detachment and attachment;
  2. rational and nonrational 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

Strengths and limitations of this study

  • This study gives voice to older people who wish to die — preferably with medical assistance —
    although they do not suffer from a lifethreatening disease or a psychiatric disorder.
  • This study is the first to elucidate what it means to live in-between intending and actually per-
    forming a self-chosen act leading to death (or not).
  • This study introduces empirical evidence into the largely theoretical debate on rational suicide.
  • Our study highlights the need for 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.
  • Although transferability to other countries is limited due to cultural differences, the Dutch discussion
    may inform the debate on (legalisation of ) assisted dying in other Western countries.

Article:

  • van Wijngaarden E, Leget C, Goossensen A. Caught between intending and doing: older people ideating on a self-chosen death. BMJ Open 2016;6:e009895. doi:10.1136/bmjopen-2015-009895

Photo credit: Simon & His Camera Life Is But A Walking Shadow – Syon Park London by Simon & His Camera via photopin (license)

Ready to give up on life

give up on life

The lived experience of elderly people who feel life is completed and no longer worth living.

Els van Wijngaarden, Carlo Leget and Anne Goossensen ((University of Humanistic Studies, Utrecht, Netherlands))

In the Netherlands, there has been much political and public debate on the question whether elderly people, who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying.
So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld.
The aim of the research by dr. Els van Wijngaarden is to describe the phenomenon ‘life is completed and no longer worth living’ from a lifeworld perspective, as it is lived and experienced by elderly people.

Reflective lifeworld research design

Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis.

The essential meaning of the phenomenon is understood as ‘a tangle of inability and unwillingness to connect to one’s actual life’, characterized by a permanently lived tension: daily experiences seem incompatible with people’s expectations of life and their idea of whom they are.[pullquote]“Deep inside, you are very much alone. Totally, totally alone”[/pullquote]

While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents:

  1. a sense of aching loneliness;
  2. the pain of not mattering;
  3. the inability to express oneself;
  4. multidimensional tiredness; and
  5. a sense of aversion towards feared dependence.

This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample.

E. van Wijngaarden et al. / Social Science & Medicine 138 (2015) 257e264.
Doi: 10.1016/j.socscimed.2015.05.015

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Who cares? Caring with technology

home care technology

‘Who?’, put short and simple, sounds rather banal, but has turned out to be a missing question in current debates about future perspectives of care arrangements in Germany for the („more and more demented“) elderly. Who cares for whom – concretely, day to day with attention and competence since we are facing a huge care gap from the side of the care-givers: While the number of future care-receivers is doubling, the amount of potential care-givers is declining (Klie 2014; Kohlen 2010).

Over the last couple of months I have been observing a discourse in politics and academia in Germany that shows an excitement about technological advancement in home care and which is supposed to secure the elderly in their home despite certain diagnostic signs and self-perceptions of frailty. Nevertheless, as studies have revealed (see especially Alistair Niemeijer 2015, Jeannette Pols 2012) the use of technology is arranged and continuously re-arranged by somebody.

Home Care

In home care, the cyclic process of integrating technology is mostly done by nurses who keep an eye on how patients handle the self-made measurements on their body and do the interpretation. In her ethnographic studies, Jeannette Pols (2012) shows how nurses and patients re-shape care when they start using telecare devices. Actual care practices employing surveillance technology do not resemble the hopes of the industry and policy makers. Surveillance technology cannot substitute care practitioners and it is not known whether there will be new challenges including pressing ethical questions facing “good” practices as we can learn from Alistair Niemeijer’s study (2015).

Last week after my lecture on Ethics, care and gender, students handed in their essays about the topic. While reading the essays over the last days I realized that the question “who is taking care of whom in the future?” was something they have not come across before. One student put it like this: “In order to prepare the future of home care we need to consider different structural formats, that is to say, what are possible arrangements; and who is supposed and willing to do the care work” (Theresa Wied).

Women

Right now, we know: Not only the care-receivers are mostly women, but also the care-givers. In home-care as well as in the elderly homes, two out of three carers are women. Among the care-givers who do informal care – without support from professional care practitioners – are more than 70% female and less than 30% male. Professional home care is done nearly only by female nurses (90%) and the numbers are closely the same when we look at the female care givers in nursing homes (Schneekloth 2006, Kohlen 2010).

One concluding thought: to engage with current scholarly work as well as political statements by policy makers on care and technology is to enter different discussions and see how is dealt with the who- questions. “Thinking from women’s lives” (Harding 1991) in which care often occupies an important place through the life span might be a fruitful idea.

References

Chris Gastmans

Chris Gastmans

1. Where are you working at this moment?

I am working as full professor of medical ethics at the Centre for Biomedical Ethics and Law (CBMER) of the Catholic University of Leuven, Belgium. The Centre was created in 1986 (we celebrate the Centre’s 25th anniversary this year) at the medical faculty of our university. The Centre’s staff consists of moral theologians and philosophers, lawyers, nurses and psychologists. At the CBMER philosophical-ethical, empirical-ethical and legal research lines have been developed for reproductive medicine, genetics, biobanks, tissue transplantation, patient rights, end-of-life care and elderly care. We provide courses in medical ethics, healthcare ethics, nursing ethics, and medical law at all faculties of our university. These educational efforts have been translated in an Erasmus Mundus Master in Bioethics.

2. Can you tell us about your research and its relation to the ethics of care?

I am in charge of the research lines ‘elderly care ethics’ and ‘end-of-life care ethics’. These two major research lines contain research projects on nurses’ involvement in end-of-life care processes (e.g. euthanasia, withholding/withdrawing artificial food and fluid administration), ethical decision-making regarding physical restraints, intimacy and sexuality in institutionalized elderly, institutional ethics policies on euthanasia, etc. As you can see, all these topics are more or less closely linked to daily care practices. From the beginning of my research activities, I considered care ethics as a promising and innovative ethical perspective from which these care practices can be analyzed. However, as I am convinced that care ethics should go into dialogue with more fundamental theological and philosophical ethical theories, I also consider the personalist approach on ethics as an important source of my ethical thinking. Besides this philosophical-ethical approach to care ethics research, I also conduct empirical ethical studies that help me to understand the essential characteristics of ethically sensitive daily care processes.

3. How did you get involved into the ethics of care?

I started my academic work in 1990 at the Centre for Biomedical Ethics and Law in Leuven. I got a doctoral degree in theology in 1995 with a critical study of the historical, anthropological, and moral theological foundations of nursing ethics, conceptualized as an ethics of care. Since 1998, I teach nursing ethics at the nursing department of the medical faculty, medical ethics at the faculty of theology and ethics of care at the faculty of philosophy. Recently, we initiated the international intensive course nursing ethics that will take place on December 7-9 2011 in Leuven. So it is clear that I was involved in the ethics of care from the very beginning of my academic career, both from a research and an educational perspective.

4. How would you define ethics of care?

Ethics of care stands for a unique normative perspective from which human behavior can be interpreted and evaluated. In order to have normative power, that is, to be able to distinguish between good and bad behavior, care ethics needs an explicit anthropological basis – a view of mankind that underlies care. This explicit anthropological basis helps us to clarify concepts closely related to care ethics such as vulnerability, interdependence, care, responsibility, relational autonomy, dignity, personhood. Only when the normative anthropological basis of care is sufficiently clarified care practices can be evaluated and optimized from an ethical point of view. I consider this as the main task of care ethicists.

5. What is the most important thing you learned from the ethics of care?

The ethics of care provides many ideas that have deepen my insight into the essential characteristics of ethical problems, for instance the central role of vulnerability in human life. But the most important thing I learned from the ethics of care is the emphasis on the contextual embeddedness of ethically sensitive care practices. The role of context in care practices and its impact on the ethical quality of care practices can easily be made visible by empirical research using a qualitative design. For instance, the ethical reasoning of nurses when they are involved in care practices concerning the use of physical restraint in elderly care, is strongly influenced by contextual factors such as workload, time (day-night), architectural characteristics of the ward, communication culture among nurses and physicians. This also shows that the ethical quality of care practices can be improved by considering their contextual embeddedness.

6. Whom do you consider to be your most important teacher(s) in this area?

When I was writing my PhD dissertation, I was strongly influenced by the writings of Lawrence Blum. His books ‘Friendship, Altruism and Morality’ (1980) and ‘Moral Perception and Particularity’ (1994) were very useful to clarify for instance the distinction between the virtue of care and emotional involvement. Regarding the personalist approach in ethics, I consider the Leuven moral theologian Louis Janssens as my most important teacher.

7. What works in the ethics of care do you see as the most important?

I would recommend the above mentioned books written by Lawrence Blum. But of course, my students are strongly motivated to read the well-known ‘Moral Boundaries’ of Joan Tronto. This book introduced really innovative perspectives in the ethics of care debate.

8. Which of your own books/articles should we read?

I would recommend ‘Nursing Considered as Moral Practice: A Philosophical-Ethical Interpretation of Nursing’, published in the Kennedy Institute of Ethics Journal, given that in this article, the main sources of my ethical thinking are brought into dialogue: nursing practice, care ethics, and personalism.

9. What are important issues for the ethics of care in the future?

Most criticism towards the ethics of care concerns normativity (see for instance the thematic issue on care ethics in Nursing Ethics 2011 (2)). Hence, I think much more research should be done in order to strengthen the normative foundation of the care ethics approach. Therefore, it might be helpful to enrich care ethics by going into dialogue with the work of important philosophers as Emmanual Levinas, Maurice Merleau-Ponty, Martin Buber and Paul Ricoeur. These philosophers could help us to deepen the normative value of care by referring to its anthropological foundations (e.g. embodiment, intersubjectivity).

10. Our ambition is to promote ethics of care nationally and internationally. Do you have any recommendations or wishes?

I appreciate the valuable work done by the colleagues. Different from our Centre in Leuven that is located at the medical faculty, the Tilburg care ethicists have very close links with theology and philosophy. I would support the efforts of the care ethicists to provide a sound philosophical and theological foundation for the ethics of care.

Linus Vanlaere

Linus Vanlaere

Linus Vanlaere is Coordinator Ethics of the Elder (Coördinator Ouderenethiek) for the Groepering van Voorzieningen voor Ouderenzorg (GVO) and scientific  fellow worker at the Centrum voor Biomedische Ethiek en Recht of the Katholieke Universiteit Leuven, where he researches the care ethical aspects of the care for the elderly. At the same time he is scientific fellow worker at the care ethical lab,  sTimul.be. Vanlaere is a religious scholar, theologist and promoted in the field of care ethics.

1. Where are your working at this moment?

In my work as clinical ethicist in a group of seven nursing homes for elderly, I try to enhance the ability of professionals to engage in ethical reflection on their practice. sTimul, a ‘care-ethics lab’ is crucial here. In sTimul, the context of elderly care is simulated, with student nurses giving care for two days, including a night, to experienced caregivers who are, for this period, in the role of elderly patients. This simulation aims to foster ethical reflection for both parties. Through the simulation, the veteran caregivers experience how dignity is at stake in daily care situations and in communication. The experience of being helpless or dependent and deprived of privacy offers caregivers incentives to reflect ethically on their own caring practices.

During the ethical reflection at the end of the second day, we try to help them to attain a heightened moral sensitivity to the vulnerabilities, values and responsibilities in their work; to make explicit norms and values that guide their actions in practice, and to evaluate this via their new experiences. Students, who take up the role of caregivers in the ‘care-ethics lab’, are stimulated to reflect ethically on their practices. The feedback they receive from their “patients” enables them to rehearse interactions and to be guided in their reflection in a ‘safe’ environment. More empirical research is needed to verify the effects of this ethical learning programme on the ethical reflection and ethical practice of caregivers in the care of older people.

2. Can you tell us about your research and its relation to the ethics of care?

My PhD concerned a philosophical-ethical research to care as concept. This started with the phenomenon ‘care’ in the life of humans. Care as moral value is the point of departure of the ethics of care, so I tried to map the different perspectives on the concept of care in the work of different care ethicists. I also make a link between the viewpoints of the Louvain tradition of personalism and a few basic principles of care ethics.

At the moment, I am involved in an empirical research to the effects of our ‘simulation learning in ethics’ on the veteran caregivers who are the ‘patients’ for two days. With this research, we want to verify the effects of this ethical learning programme on the ethical reflection and ethical practice of caregivers in the care for older people. The research can give us a more adequate view to the value of ethical reflection for the ethical attitude of caregivers. This research also possibly brings us to a better understanding of the ethical concepts used in care ethics.

3. How did you get involved into the ethics of care?

I studied theology at the Katholieke Universiteit of Leuven, where the course of ‘Feminist Studies’ brought me in contact with the work of Carol Gilligan and Joan Tronto. I finished my Master studies with a research paper about a care-ethical view on suicide. Chris Gastmans, at that time assistant professor at the Center of Biomedical Ethics and Law, evaluated this paper and invited me to work on a research project about the concept of care. He gave me the opportunity within this project to elaborate a care-ethical view on suicide in the elderly. By this project I got involved into the ethics of care, but also into the ethics of care into the perspective of elderly care.

4. How would you define ethics of care?

I think I am defined by the ethics of care more then I can define ethics of care. Crucial in defining ethics of care is the contextual and relational sensitivity; the fact that the care ethics perspective starts from the context wherein care takes place.

5. What is the most important thing you learned from the ethics of care?

The most important thing that I learned from the ethics of care is that it is impossible to ‘do ethics’ in a detached, abstract, academic way. To stand in “the mud” of the caring practices, to know the context of care, to reveal and to reflect on your own intuitions and emotions and these of the other people involved, all this are very important insights of the ethics of care.

6. Whom do you consider to be your most important teacher(s) in this area?

Referring to my answers above, I would say that the caregivers on the one hand, and the care-receivers (the elderly) at the other hand, are both my most important teachers. They can learn me a lot about care and care ethics, because they experience daily what it is to give and/or to receive care, what ‘good’ care is, what ‘reciprocity’ in care means and how important it is in a view on good care…

7. What works in the ethics of care do you see as the most important?

I must say that novels have learned me the most about care ethics. Novels as ‘Slow Man’ (Coetzee) or ‘Everyman’ (Roth) for example, stimulated my thinking about some fundamental concepts of the ethics of care and made these concepts very clear to me through the narratives of ‘real life experiences’. In this way, novels help me to sharpen my ethical reasoning more then some academic works. But of course, ‘Moral Bounderies’ is important to me; Tronto’s view on care as a moral value and as a basis for the political achievement of a good society is crucial for care ethics. The work of Stan Van Hooft, and more especially his older book ‘Caring’ – where he starts from ‘deep caring’ as ontological structure – is also very important to me.

8. Which of your own books/articles should we read?

Maybe the stories of people about care that I will write down somewhere in the future. Meanwhile I would refer to ‘Cirkels van zorg’ (Cercles of care), where Chris Gastmans and I applied a care ethics perspective on elderly care.

9. What are important issues for the ethics of care in the future?

The issue of the place of care as moral value in a normative perspective seems the most important issue for me. There is still a great deal of confusion and uncertainty surrounding the notion of care. One of the focal points of critics is the normativity of care. To what extent does care have an obligatory character? Only when the objective normative basis of care is sufficiently clarified, care practices can be evaluated and optimised from an ethical perspective. For this issue, I refer to our article in ‘Bijdragen. International Journal in Philosophy and Theology’ 69 (4), 443-469.

10. It is our ambition to promote ethics of care nationally and internationally. Do you have any recommendations or wishes?

Of course I refer to our care-ethics lab sTimul as a creative and innovative tool in facilitating and promoting ethics of care. It is my dream to set up an international network of ‘care-ethics lab’ in ethics education…

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