Publications – Medical and Health Humanities

June 13, 2019

Care Ethics and Poetry

Care Ethics and Poetry is the first book length work to address the relationship between poetry and feminist care ethics.

The authors argue that morality, and more specifically, moral progress, is a product of inquiry, imagination, and confronting new experiences. Engaging poetry, therefore, can contribute to the habits necessary for a robust moral life—specifically, caring.

Each chapter offers poems that can provoke considerations of moral relations without explicitly moralizing. Topics include Poetry and Ethics, Habits of Caring Knowledge, Habits of Imagination, Habits of Encountering Singularity, and Moral Progress. The book contributes to valorizing poetry and aesthetic experience as much as it does to reassessing how we think about care ethics.

Primarily a book of philosophy rather than literary analysis, Care Ethics and Poetry includes dozens of poems. For those who view care theory as more than a normative ethic of adjudication, this will be an important work.

Care Ethics and Poetry by Maurice Hamington and Ce Rosenow.
ISBN-10: 303017977X ISBN-13: 978-3030179779

Reviews

“A lovely tribute to both poetry and care ethics and how, together, they increase moral sensitivity and joy in our relationships.”
Nel Noddings, Lee Jacks Professor of Child Education, Emerita, Stanford University

“Finally, a book that does justice to care by welcoming complexity, context and creativity. This polyvocal book delightfully and meticulously tells us the story about a performative and aesthetic approach to caring and moral progress. Slowly but surely, one becomes part of an intimate tapestry of voices of poets, ethicists and moral philosophers. Hamington and Rosenow not only provide us with new ethical language, they also evoke wonder and a longing for more.”
Merel Visse, Associate Professor of Care Ethics, University of Humanistic Studies, The Netherlands

February 25, 2019

Call for Papers: Care Ethics, Religion and Spiritual Traditions

spiritual traditions, religion and care ethics

Feminist Care Ethics has received extensive attention in a variety of fields over the past quarter century including political science, philosophy, education, social work, sociology and more. There has been relatively little discussion of Care Ethics in the field of Religious Studies. Surprisingly, given that virtually all mainstream religions hold care and compassion as a major tenet. Care Ethics and Religion will be a volume of original essays that fills this intellectual gap.

Editors Maurice Hamington, Carlo Leget, Inge van Nistelrooij, and Maureen Sander-Staudt invite papers on the topic of Care Ethics and religious teachings, traditions, identities, practices, practitioners, as well as atheism and humanist spiritual traditions. All contributions should engage feminist Care Ethics as exemplified by scholars such as Marian Barnes, Carol Gilligan, Nel Noddings, and Joan Tronto.

Prospective contributors should submit a 500 word abstract to SanderStaudtM@gmail.com by April 15, 2019.

Description

Care Ethics is a moral theory and interdisciplinary field of studies/enquiry, rooted in relations of interdependency and universal human needs for care. The ethic departs from moral theories such as Utilitarianism, Kantianism, and Neo-Liberalism in critiquing their individualistic, rationalistic, and abstract elements as distortions of lived human lives.

Care Ethics postulates that humans are universally born in need of embodied and social-psychological care. Making care ontologically prior to moral concerns such as justice. Despite the universal need for care which makes care-giving an essential practice without which human life would cease, the ethic situates care giving practices in particular places, times, and identities.

Given the extent to which care giving overlaps with richly diverse religious and spiritual identities, beliefs, rituals, and traditions, this volume seeks to expand the field of Care Ethics to consider how religion, construed for global religious and secular audiences, potentially enhances but can also destabilize the goals of care.

Commentary and analysis

The editors of this anthology invite critical commentary and analysis on how religion, both organized and less formally arranged, may facilitate or erode the normative goals associated with Care Ethics. To the extent that many religions recognize the human and embodied need for care, and valorize the moral obligation to give and take care as having a divine component, it is sometimes the case that religious practices enrich care.

At the same time, as a feminist ethic, Care Ethics is well situated to uniquely critique and question a wide variety of religious motifs, practices, and teachings in light of how well they do and do not succeed in completing the goals of care in ways that are competent and just. This volume seeks to initiate discussion of the possible affinities and strains between Care Ethics and religion, broadly construed, and to indicate areas in need of future study.

Topics

Possible questions/topics may include but are not limited to:

How does religion contribute to caring identity and practice?
Are caring virtues also religious virtues, and the converse?
Ideal syntheses of care ethics and religion/spirituality
Care-ethical and religious perspectives on precarity and compassion
Care as a religious motif
Care ethics, atheism and secular humanism
Care ethics and non-supernatural spiritual traditions (e.g. Buddhism, Taoism)
Care, religion, and anthropocentrism/relations with the natural world
Care as instrument of religious colonialism and oppression
Religion as catalyst for care completion and social equity
Care ethics and theology on love and compassion
Care ethics as a critique of religious theory and practice
Coping with suffering, death, and loss
Queering care ethics and religion
Spiritual violence and care
Care as a gendered and intersectional religious theme
Care, religion and sexuality
Care as a marginalized, disenfranchised, and appropriated concept in religion
Care and religion as slave moralities
The role of embodiment in religion and care
Contested concepts: care, love, compassion in religion
Care and God; the divine; good/evil; heaven/hell; the afterlife

January 7, 2019

Respecting moral diversity

Facing the death of other people, we are confronted with our deepest convictions of what makes sense and what does not.

A mother of four should not die of breast cancer in her mid 40s, for this runs contrary to whatever possible order of justice in the world. A beloved father in a vegetative state should not die a horrible death when feedings tubes are withdrawn. Even when he had always stated that he would not have wanted to live in this condition.

In most people, witnessing someone dying, evokes a multitude of emotions and thoughts, ranging from feelings of guilt or responsibility to sadness, anger or sometimes even joy. Emotions are important human reactions to situations, containing knowledge and appraisals of reality, and having an intelligence of their own.

Carlo Leget discusses in an editorial in the journal Palliative Medicine the importance of understanding and respecting emotions of family members of dying patients. It, for example, mentions the importance of culture in ethical issues, and how difficult it can be to respect cultural diversity, especially when it touches upon our deepest felt emotions and convictions.

“Ethics is a cultural product based on a shared legacy and lived experience reflected in a particular language, history, and traditions. “

Ethics, emotions and culture: Respecting moral diversity

The experience of being involved in the dying process of another person has an impact on almost every human being. Whether this involvement is that of a professional care giver, a relative or a volunteer seems of secondary importance.

The direct confrontation with a dying process is an experience that confronts us with the finitude and irreversibility of human existence. In most people, this evokes a multitude of emotions and thoughts, ranging from feelings of guilt or responsibility to sadness, anger or sometimes even joy.

Emotions are important human reactions to situations, containing knowledge and appraisals of reality, and having an intelligence of their own.

Read more »

Leget, C. (2018). Ethics, emotions and culture: Respecting moral diversity. Palliative Medicine, 32(7), 1145–1146. Doi: 10.1177/0269216318777905

September 27, 2018

Caring democracy: current topics in the political theory of care

Introduction

In 2013, political care ethicist Joan Tronto((Joan C. Tronto is Professor of Political Science at the University of Minnesota, Professor Emerita at the City University of New York and initiator of the Care Ethics Research Consortium www.care-ethics.org.)) applied a care-ethical view to democratic theory in her book Caring democracy: Markets, equality and justice, and invited scholars from all over the world to think about democracy from a care-ethical perspective.

Petr Urban((Petr Urban, PhD, is Head of the Department of Contemporary Continental Philosophy at the Czech Academy of Sciences)) took up this invitation by organising the ‘Caring Democracy’ conference, with the aim of discussing current topics in the political theory of care in order to contribute to a more caring democracy. Hosted by the Institute of Philosophy of the Czech Academy of Sciences, the conference was held at the Karolinum, a historical building located in Prague’s Old Town.

The conference programme consisted of a keynote talk by Tronto and work presented by 16 experts from 11 countries. The conference attracted an international audience who actively participated in the discussions. The well-arranged coffee breaks and lunches were excellent moments for attendees to get to know each other and to exchange information.

Keynote

Professor Joan Tronto delivered the keynote address on ‘Neopopulists and exclusionary discourses of care: towards a new politics of inclusion’. She started by stating that we should no longer see care as just a ‘practice’ and a ‘disposition’; we need to think of care as a discursive practice and as ‘an idea that functions in powerful ways’. In the first edition of the International Journal of Care and Caring (IJCC) in 2017, Tronto offered a critique of, and an alternative to, the political discourse of neoliberalism, noting that it is important to rethink the allocation of care responsibilities, but within a democratic framework. In her keynote address, Tronto paid attention to the discourse of neopopulism now evident in the US and Europe as new problems arise, and explained why it is a problematic framework while proposing an alternative one. Tronto explained that neopopulists can be characterised by their shared concerns, for instance, people who feel threatened by immigrants and call for additional security to protect society. She argued that we could not offer an alternative until we understand these beliefs within a discourse of care. To do that, we first have to look at those who vote for neopopulists, and why.

Recent research indicates that especially men, less educated people, those with religious affiliations and majority ethnic groups opt to vote for neopopulists, seeking security and economic protection, with neopopulist leaders responding to these concerns within a context of care: ‘Take care of yourself, blame others’. Tronto associates this discourse with a traditional breadwinner–caregiver model, that is, vulnerable women are protected by strong men who feel good about carrying the responsibility to protect their families. She stressed that we have to understand that neopopulists cling to familiar traditions out of fear. However, this traditional model of caring no longer works in an increasingly diverse society in which women and men have become more equal. Most importantly, this model creates greater levels of economic inequality and endangers democracy. Tronto posed the following question: ‘How can we offer an alternative to this old-fashioned model of caring and formulate a better argument from the political Left to challenge the neopopulists’ framework?’.

Tronto underlined that she does not yet have a precise answer to the question, but she does know that good practices of care and governmental change towards a more caring democracy will help. According to Tronto, care generates more care. She shared some examples showing how new spaces and conditions have created opportunities for strangers to connect and care for each other across racial, age and economic lines: senior citizens spending time in a childcare facility with the children of working parents; and people asked to invite their previously unknown neighbour to share a meal. In Tronto’s words: ‘We don’t need to be afraid, we need to be more caring’. Tronto’s keynote address encouraged us to think about a caring democracy as an alternative political framework to neopopulism, and showed how opportunities to create a more democratic society can be centred around care.

In celebration of the first ever annual CERC conference in Portland, USA this week the latest International Journal Care & Caring special issue is free to access until 30 September.

Contributions

The two-day programme included papers on a range of topics addressing areas related to the political theory of care. At the end of the conference, Tronto summarised the contributions of the papers in three categories: (1) the conceptualisation and meaning of ‘caring democracy’; (2) ‘democratic practices’; and (3) ‘appropriate methods’ for researching topics in care ethics.

In the first category, Elizabeth Conradi’s (DE) paper reflected on conceptualisations of ‘care’ and showed that these often refer to either an ethical-political dimension or a welfare-resourcing dimension, with a tension emerging between these two dimensions. Conradi proposed to separate the dimensions analytically because they translate into different kinds of practical questions, and are sub-structed by different political goals. Brunella Casalini (IT) addressed another conceptual gap, that is, between two different feminist traditions on the meaning of care: one with a vocabulary of care; the other with a feminist vocabulary. She compared both vocabularies by analysing the differences and similarities, and showed how they could be merged. Using a more philosophical language, including Nussbaum’s notion of ‘compassion’, Justin Leonard Cardy (US) presented his work on a philosophy of love, titled ‘Civic tenderness: love’s role in achieving justice’.

In the second category, Helena Olofsdotter Stensöta’s (SE) presentation defended the welfare state as a historical institution that can, under certain circumstances, be seen as a caring institution. Petr Urban (CZ) also stressed the possibility that state institutions care, arguing that, ‘Oftentimes, the tension between bureaucratic and caring values in the practice of public administration is healthy and productive’. However, there were also presentations about state-oriented practices that are not so caring: Lizzie Ward described a disturbing situation concerning elder-care in the UK, which showed the risks and responsibilities inherent in self-funded care; she stressed that intense vulnerability is not a good bargaining position. From the viewpoint of poor women in Japan, Yayo Okano and Satomi Maruyama presented examples that made clear that these women do not have a voice. The lack of care and of the opportunity to participate in political debates on poverty conceals the poverty of these women.

There were three presentations on the problematic role of the state in the field of education. Pokorný indicated that the Czech government shows little interest in education, especially in the school as a niche of positive deviation. Adriana Jesenková presented examples of practices in Slovakia that show the deficits of democratic care, as well as the importance of diversity and pluralism. In a presentation on caring, education and democracy, Tammy Shel pleaded for more philosophy classes in Israel in order to teach students how to debate in a proper way. In the long term, this should benefit democracy in her country. Furthermore, there were presentations that provided alternative ways of developing democratic practices: Jorma Heier (DE) postulated that democratic care starts from social movements, rather than from politics; Anne Cress (DE) explored the critical and transformative potential of care ethics; and Kanchana Mahedevan (IN) raised a global postcolonial concern, namely, that care goes beyond the boundaries of nation-states and causes new care inequalities. Concerning caring practices, Veerle Draulans and Wouter de Tavernier (BE) presented their research on culturally diverse elder-care and the complexity of the intersubjective relations of recognition in this field.

In the third category, the focus was more on the question of how to conduct research on care. The research presented included a variety of methods: Pokorný promoted phenomenology; Jesenková argued for pragmatism; Clardy defended the use of cognitive science; and others used philosophical analyses in various forms (eg Casalini and Cress). Research by Okano and Maruyama (JP), as well as Draulans and De Tavernier (BE), focused empirically on social science data, and Lizzy Ward showed an example of how co-production might be a way to think methodologically about care.

Tronto’s keynote address and the papers presented show that it is a challenging (But not impossible!) task to move from a neopopulist to a democratic framework in which care should be central in our society. Tronto closed the conference with an urgent call to continue to refine the feminist arguments of care and to engage in broader public discussions on care as a research community, and invited participants to become a member of the Care Ethics Research Consortium (CERC) (see: www.care-ethics.org).

Honsbeek, K. (2018) Caring democracy: current topics in the political theory of care (23–24 November 2017, Prague, Czech Republic), International Journal of Care and Caring, 2(3): 449–52, DOI: 10.1332/239788218X15355318754221

Krystel Honsbeek MA

Krystel Honsbeek has a background in social work, and received her Master’s degrees in philosophy (Tilburg University) and care ethics (University of Humanistic Studies). Currently, she is a PhD student at the Department of Geography, Planning and Environment at the Radboud University Nijmegen in the Netherlands. Using a care ethical perspective, her research focuses on meeting care needs of older LGBT people in changing local care landscapes. Also, she is a social worker at autism organization Leermakers Zorggroep, and is a member of the editorial board of the Care Ethics Research Consortium.

August 23, 2018

Medical versus care ethics

As a former medical student – but not a doctor – studying the field of care ethics, I was always interested in bringing these two worlds together. Whereas the dominant (bio)medical ethics in healthcare revolves around four principles – beneficence, non-maleficence, respect for autonomy, and justice – care ethics questions whether morality can be derived from abstract principles and suggests it rather emerges from relational practices. As a medical student I wasn’t even aware of an, or any, alternative brand of ethics. Was it just me or was my lack of knowledge a consequence of medical education and the profession I was briefly acquainted with?

My years as a medical student had left me with a negative stance towards medical education and health care practice in general, without actually being able to explain why. My negative feelings were corroborated by several (non-)scientific sources describing harm in the medical encounter. In 2011, Elin Martinsen ((Martinsen, E. (2011). Harm in the absence of care: Towards a medical ethics that cares. Nursing Ethics, 18(2), pp.174-183.)) attributed this harm to the dominant ethics in healthcare.

She pleads to include “care as a core concept in medical ethical terminology” because of “the harm to which patients may be exposed owing to a lack of care in the clinical encounter,” specifically between doctors and patients. She leaves the didactical challenges arising from such a venture open for further enquiry. This left me with a chance to tackle both my personal questions and fill a scientific gap.

The informal and hidden curriculum of medical education

In this paper, medical education in the Netherlands is investigated through a “care-ethical lens”. This means exploring the possibility of enriching medical education with care-ethical insights, while at the same time discovering possible challenges emerging from such an undertaking. We present an overview of what is written on medical education, we describe care-ethical theories and what implementing these theories into medical education would imply, and we consider the accounts of several authors on the subject of care ethics and medical education.[pullquote]Master Care Ethics and Policy, University of Humanistic Studies.[/pullquote]

Personally, I have learnt most from further investigating medical education. Several authors offer alarming insights into its unintended, educational effects. Besides a formal curriculum or the explicated learning objectives, an informal and a hidden curriculum are also described. The informal curriculum is about the interpersonal level of teaching and learning between teacher and student. The hidden curriculum is also about learning objectives, but, as its name suggests, hidden, unintentional, and implicit.

What is so alarming about this, is that these curricula can lead to the erosion of expectations, ideals, and personal traits in students. Several examples of erosion have been described, such as the loss of idealism, adopting a ritualized professional identity, emotional neutralization, change of ethical integrity, tolerance of abuse, and acceptance of hierarchy. Students become hidebound, focused on facts, emotionally detached, cynical, arrogant, and irritable. Important to note here is that erosion doesn’t occur in every medical student nor does it always happen to the same extent.

Enriching medical education

What do these hidden, unintentional, and implicit effects of medical education imply for the possibility of enriching medical education with care-ethical insights? By connecting the collected bodies of knowledge on both medical education and care ethics, possible challenges are identified which can be narrowed down to two: didactical and non-didactical. These challenges might be overcome through focusing more deeply on the clinical phases of training and creating awareness of the medical morality and all that is implicit among healthcare practitioners.

With care ethics, we are dealing with a different way of thinking, one that deviates from what is currently dominant within the medical field, as I quickly realized leaving that field. We should not underestimate the possible resistance to a paradigm shift.

Eva van Reenen, MA Care Ethics

Van Reenen, E. & Van Nistelrooij, A.A.M. (2017). A spoonful of care ethics: the challenges of enriching medical education. Nursing Ethics. doi: 10.1177/0969733017747956

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November 25, 2017

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

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

March 23, 2017

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

Chair 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.

December 21, 2016

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:

considered their lives to be ‘completed’;
suffered from the prospect of living on;
currently wished to die;
were 70 years of age or older;
were not terminally ill;
considered themselves to be mentally competent;
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]

detachment and attachment;
rational and nonrational considerations;
taking control and lingering uncertainty;
resisting interference and longing for support;
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)

November 28, 2016

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:

a sense of aching loneliness;
the pain of not mattering;
the inability to express oneself;
multidimensional tiredness; and
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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