Category: Publications

Tom Malleson-Interdependency
Publications

Interdependency: The fourth existential insult to humanity

Tom Malleson, PhD recently published an interesting article on interdependency, from a care ethical point of view. He argues that taking interdependency seriously would lead to profound changes in our culture, our central political concepts, and even our major institutions. We contacted Tom Malleson for an insight into the background of the article and the author.

Interdisciplinary

“I’m one of those academics who is always curious, always jumping around between disciplines, like some kind of intellectual nomad, between the fields of political science, philosophy, sociology, political economy, and feminist theory.
One strand of my research interest revolves around the study of Real Utopias, which are institutions designed to be both normatively emancipatory and empirically grounded. My interests in this area include things like economic democracy, the solidarity economy, basic income, participatory budgeting, carbon taxes, universal caregiving, and so on.

Another strand of my research interest involves certain debates in contemporary political philosophy. One of the major positions in political theory, as well as in the mainstream public, is that of libertarianism. I had long been uncomfortable with libertarian ideas – which conventionally start from a mysterious “state of nature” of independent men walking around in the woods, creating private property, and trading with other men. Where are the women in this picture? Where are the kids? Where are the disabled and the elderly, in short – where were the real human beings?”

Ethics of care feminists

“Thinking through these questions led me to feminist philosophy, and in particular, the work of ethics of care feminists. For them, a fundamental feature of human life is relationality and interdependency. Human beings are not born free. We do not emerge from the birth canal fully attired in suit and tie. In fact, human beings are born helpless, vulnerable, and inherently dependent on others. To the extent that we become free, it is due to the support, nurturance, and care provided to us by others.

Delving into this area made me realize all the myriad ways in which our current society is still tied to old ideas of “independence”; it is woven into our culture, our basic concepts, even our economic institutions. Yet once we come to grip with the fact of our actual interdependence, many of these old ideas and practices will need to change. That’s what this paper is all about.”

Malleson, T. (2017). Interdependency: The fourth existential insult to humanity. Contemporary Political Theory. doi: 10.1057/s41296-017-0167-2.
Read the full article here.
Tom Malleson
Tom Malleson

Tom Malleson

Assistant professor of Social Justice & Peace Studies at King’s University in Western University, Canada.
Research interests are interdisciplinary, crisscrossing contemporary political theory, feminist theory, political economy, philosophy, and sociology.
Contact: tommalleson@gmail.com
Website: www.tommalleson.com

Art of Living, Art of Dying
Publications

Art of Living, Art of Dying

Spring 2017 a new book by Carlo Leget was published, Art of Living, Art of Dying. Spiritual Care for a Good Death, by Jessica Kingsley Publishers in London/Philadelphia. Care-ethics.org had an interview with the author.

A new book about spiritual care, why did you write it?

For some time I had been thinking that it would be good to publish a book on the art of dying in English. The two Dutch books that I had written, Ruimte om te sterven and Van levenskunst tot stervenskunst, have been reprinted many times and every time when I was giving a lecture abroad people would be very interested to read them.
Last year I gave a lecture in San Diego at the annual conference of the Health Care Chaplaincy Network, and a Publisher came to me offering to make a book with me. This is when I took my chance.

When does a professor find the time to write a book nowadays?

Last summer I spent some time in Germany and I had given myself 4 weeks. I had already thought out what I wanted to write. Every morning I stood up early, searched for a spark of enthusiasm in myself about the subject I wanted to write about, and when I had reached 3000 words, I would stop. That should be enough for that day.

“Expertly grounded in an academic theological and philosophical discourse, Professor Leget guides the reader through a contemporary reading of the medieval Ars moriendi, blending the wisdom of the past with a real-world understanding of the present.” ~ Philip Larkin

Did you succeed in writing down everything in such a short period of time?

No, I didn’t. When I was writing the last chapters my brother-in-law called me from the Netherlands. My eldest sister appeared to have come back from her holiday in a very bad condition. She had been admitted to the hospital immediately and she died a week after her return in the Neterhlands, 50 years old.
I travelled back to the Netherlands and I was lucky to be able to say goodbye to her. It was hardly conceivable what had happened. Suddenly I was painfully cast from theory into practice. There are no words for how bizarre this was. The world stood still. From that moment on also my writing had been interrupted for a while.

Did what happened have any impact on the content of your book?

When I began to write again after a couple of weeks, I was afraid that I would look with new eyes at everything I had written so far, and that it would no longer be in tune with my feelings. This appeared not to be so, luckily. I could still agree with what I had written. At that moment I knew that I would dedicate the book to her.

You have written two books about the art of dying already. Is there for the people who are familiar with your previous work anything new to discover in this English book?

Yes, definitely. The first version of my book Ruimte om te sterven was written almost 15 years ago. Since then my thought has developed further and care ethics has had a great influence on the way I look at the world. But also the many lectures and presentations on the art of dying, and the many contacts with care givers of various disciplines have changed my way of thinking. I have learned to think in a more concrete and practical way. At the same time I remain someone who loves to analyze and think theoretically.

Can you give concrete examples of what is new in this book?

The book is crafted better and the development of thought is done more thoroughly. Also the idea of inner polyphony has been developed further. I call this the ‘polyphonic self’. For this I was inspired by the work of Gettie Kievit-Lamens, who has been chaplain at academic hospice Demeter in De Bilt, The Netherlands, and who wrote a dissertation in which she brings my central metaphor of ‘inner space’ in resonance with the work of Hubert Hermans on the ‘dialogical self’.

But also the work of my PhD-students Eric Olsman and Els van Wijngaarden have put me on this track. Finally, things that have happened in my own biography these past few years have confronted me with the importance of listening to this inner polyphony.

Does this mean that the new book is more complex than the previous ones?

I don’t think so in the end. I have tried to keep the balance between simplicity and complexity by creating space for this complexity on the one hand, but keeping complex issues accessible and concrete on the other. In this way I have summarized the core of the art of dying in five essential questions that every human being could ask him- or herself sooner or later.

“I recommend this book not only for chaplains and clergy, but also for others on the healthcare team, including counsellors, doctors, nurses, allied healthcare workers and other professionals who come into contact with patients in hospitals and hospices.” ~ Christina Puchalski

What adds this book to all that has already been written about spirituality in palliative care?

I think my approach is one of the few that considers the art of dying as a practice that is shaped by the people involved in their interaction, and that in the end it is the art of the one who is dying. Much literature aims to put the severely ill or dying person at the centre, but ends with writing what care givers can or should do. Moreover I have tried to not tell people what is wrong and what is right, aiming to open up a space that enables one to listen what really matters in life.

Finally: how is this book related to the rest of your scientific work?

The book has helped me to retrieve a number of central thoughts, thinking them through and articulating them better. It is part of the theoretical framework of a research project funded by the government that I am going to do in collaboration with Saskia Teunissen, professor in hospice care at Utrecht University. Next to this I have further plans  for the next round of the state funded ZonMW programme Palliantie. But this summer I will take four weeks of vacation.

Carlo Leget

Carlo LegetChair holder, full professor in Ethics of Care and Spiritual Counseling and extraordinary professor Palliative Care at the University of Humanistic Studies.

His academic works focuses on ethics and spirituality in palliative care, and he is involved in many discussions in the Netherlands about end-of-life issues. He wrote, edited or co-edited 20 books and published more than 50 refereed papers and more than 40 contributions to books. He is in the editorial board of a number of international and Dutch journals.

He chairs the national working group on ‘Ethics and spiritual care’ in his country and is first author of the first national consensus based guideline on spiritual care in palliative care (2010). He also co-chairs the EAPC-Taskforce on spiritual care, is a board member of Palliactief, the Dutch Association for Professional Palliative Care. He takes also part in the Global Network on Spirituality and Health.

Self-chosen death by elderly
Publications

Older people on self-chosen death

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)

give up on life
Publications

Ready to 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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