palliative care – Medical and Health Humanities

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 A beloved father in a vegetative state should not die a horrible death when feedings tubes are withdrawn.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 4, 2017

Carlo Leget

Interview with prof.dr. Carlo Leget, Chair Care Ethics, University of Humanistic Studies, The Netherlands.

1. Where are you working at this moment?

Since 2012 I am a full professor in Care Ethics at the University of Humanistic Studies in Utrecht, The Netherlands. At the same university I hold an endowed chair in Ethical and spiritual questions in palliative care, established by the Association Hospice Care Netherlands.

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

My research is situated at the intersection between care ethics and spirituality or meaning, and my main area of expertise is in palliative care and end-of-life issues. In my view care practices are an important source for a meaningful life, and care ethics offers an excellent entrance to reflecting on meaning in a way that makes us aware of how the way we organize society has a great impact on what people experience.

One of my PhD-students e.g. interviewed older people who are tired with life – and who are the subject of a debate on euthanasia in my country – and was able to demonstrate that these people suffer from existential problems that are related to the way we have organized our society.

3. How did you get involved in care ethics?

I was trained as a theologian and during the writing of my PhD thesis on life and death in the theology of Thomas Aquinas I became more and more interested in ethics. I switched from theology to medical ethics, but I gradually became more and more critical to mainstream medical ethics. In 2009 I had the opportunity of switching to an associate professorship in care ethics and that has been a great inspiration ever since.

4. How would you define care ethics?

I see care ethics as an interdisciplinary field of inquiry to which many disciplines are contributing since the beginning of the 1980’s.

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

I have a strong tendency to rationalize and abstract from the concrete messiness of life. That is why I was probably so attracted to the scholastic thinking of Aquinas – although getting to know him, I discovered that he is often misunderstood. What many people do not know e.g. is that he wrote the largest medieval treatise on emotions (passiones animae) in the Middle Ages.
When I was young, I was a typical ‘Jake’ kind of guy, and care ethics taught me to see the value of ‘Amy’s way’, to put it in terms of Gilligan’s book. Or to put it differently: epistemologically care ethics has turned my world upside down.

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

This is hard to tell, because I have learned so much from so many authors. In the Netherlands I think Annelies van Heijst has been a great inspiration. Internationally the three authors that have changed my way of looking of things are Carol Gilligan, Joan Tronto and Margaret Urban Walker.

7. What publications do you consider the most important with regard to care ethics?

Another hard question. For me personally the books of these four women have been very important: Professional Loving Care, In a Different Voice, Moral Boundaries, and Moral Understandings. After the impact of these books, authors I got to know afterwards seem to be less ground breaking. But I know that my thinking is also influenced by many others, like Maurice Hamington, Daniel Engster, Helen Kohlen, Fabienne Brugères and Sophie Bourgault, to name but a few.

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

I think I did a decent job in my paper ‘Analyzing dignity: a perspective form the ethics of care’ that was published in Medicine, Health Care and Philosophy in 2013. And more recently I wrote a paper with the colleagues of my department with the title: ‘Beyond demarcation: care ethics as an interdisciplinary field of enquiry’ which will be published in Nursing Ethics this year. And last week my latest book came out, Art of Living, Art of Dying. Spiritual Care for a Good Death. Although I am a little reluctant to call it a care ethics work, it is very much inspired by a care ethical approach.

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

For me the great thing about care ethics is that it opens a space for interdisciplinary cooperation inspired by a common idea of the importance of creating a complex and life-sustaining web that makes the world a better place to live in, to quote freely from Joan Tronto’s and Berenice Fischer’s definition. Such a web involves all kinds of connections between disciplines and traditions, and for me the integration of empirical and theoretical research is very important. But also the possibility to connect different approaches like phenomenology, practice theory and political theory in order to create something that does justice to the richness of the concept of care.

10. How may care ethics contribute to society as a whole, do you think?

By taking part in societal debates in newspapers, radio, television and social media, and presenting people a different way of looking at the world. But also by educating students. I am very proud of the Master’s degree in care ethics we run at our university, where (mainly) professionals are introduced to care ethics. When they return to their jobs they are important ambassadors of a care ethical way of looking at the world.

11. Do you know of any research-based projects in local communities, institutions or on national levels, where ‘care’ is central? Please describe.

There are many projects that come to my mind, but not all of them have reflected well on what care is. One project I am involved in myself focuses at enabling patients and families who are involved in palliative care to share their thoughts and worries on an existential level. I think palliative care is a very interesting field for care ethical reflection, because it is all about dealing with relationships, corporeality, vulnerability, power relations and meaning or spirituality.

12. The aim of the consortium is to further develop care ethics internationally by creating connections between people who are involved in this interdisciplinary field, both in scientific and societal realms. Do you have any recommendations for us?

My recommendation is that it is important to travel and to meet people face to face. We cannot live by reading and writing alone: if we take central insights of care ethics like the importance of corporeality seriously, we must meet in person and experience the personal concerns behind our scientific work. Building a care ethical movement is about more than transporting ideas. It is also about building a living network of relations. From there we will develop further agenda’s and collaborations.

June 28, 2017

Helen Kohlen

Interview with prof. dr. Helen Kohlen, Philosophical-Theological University of Vallendar (Koblenz) in Germany.

1. Where are you working at this moment?

I am working at the Philosophical-Theological University of Vallendar (Koblenz) in Germany. It is a small private university that has just been building up an ethics institute in which I am working as a co-director. I teach ethics and palliative care in the nursing faculty. Since 2015, a visiting professorship at the University for Humanistic Studies in Utrecht brought about a close collaboration with care ethicists in Utrecht.

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

My research addresses the ethics of care in the context of health care practices and the distribution of care work in society. Within this broad research field and having a background in Health Care Studies, English Literature, Political Science and Nursing I have a number different interests.

My first book Conflicts of Care (2009) was based on a field research in clinical ethics. I studied hospital ethics committees in the US and in Germany by foregrounding the development of Bioethics. I found out that the ethics of care has historically been marginalized as a theoretical approach to understand conflicts in clinical practice. Since the language of care is hardly used in German hospital ethics committees, conflicts that could have been represented from an ethics of care perspective tend to be sidelined and dismissed.

Based on the findings, in 2010 a participatory action research project was designed with the intention of developing a program that would empower professional health care actors to move ethics in practice by bringing in care ethical perspectives. I have recently completed a chapter for a new edited collection, Evaluation, Care and Society. It is edited by Merel Visse and Tineke Abma and will be published soon.
My chapter is called Evaluation for Moving Ethics in Health Care Services towards Democratic Care and addresses care ethics as an ongoing practice that involves learning process of democratisation. It describes a model that consists of the three pillars Education, Companionship and Open Space.

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

First, the ethics of care was a finding of my historical analysis ‘The move of bioethics to the bedside‘, seeing that the ethics of care appeared to be as a kind of counter-movement to US- American Bioethics in the 1980s.
Second, I read Elisabeth Conradi’s book ‘Take Care. Grundlagen einer Ethik der Achtsamkeit’ (2001) which I found very convincing. The book inspired me to read Joan Tronto’s book ‘Moral Boundaries. A Political Argument for an Ethics of Care’ (1994).

In 2006 I invited Joan Tronto to the University of Hannover in Germany and she had a lecture on the ethics of care and politics. Since then I have continuously been reading, writing and talking about the ethics of care. For example, I organized a conference (together with Hartmut Remmers) on Bioethics, Care and Gender and we published a collection of articles under this title (2010). In 2014 I coedited (with Gert Olthius & Jorma Heier) the book Moral Boundaries Redrawn. The Significance of Joan Tronto’s Arguments for Political Theory, Professional Ethics, and Care as Practice.

4. How would you define ethics of care?

I would define care ethics as a moral attitude and a set of practices that starts by seeing the human being as being basically dependent and vulnerable. The focus is the relational with regard to the concrete other and the concrete situation in time and space. In my studies I use care ethical questions within a critical lens to analyse what is missing in daily health care practices. These questions raise issues of conflict, power, inequality and irresponsibility.

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

I have learned that ethics can never be separated from politics and that doing care ethics in the health care arena can never be separated from doing political care ethics. I have also learned that the ethics of care is a movement of people who try to stand up against neo-liberalism.

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

Among the ones who have explicitly worked on the ethics of care I consider Carol Gilligan, Joan Tronto, Elisabeth Conradi, M.U. Walker, Annelies van Heijst, Eva Feder Kittay, Frigga Haug to be my most important teachers.

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

Carol Gilligan (1982): In a Different Voice, Psychological Theory and Women’s Development. Harvard University Press;
Joan Tronto (1994): Moral Boundaries, Political Argument for an Ethics of Care. Routledge;
Tronto, Joan (2013): Caring Democracy. Markets, Equality, and Justice. New York, London;
Elisabeth Conradi (2001): Take Care, Grundlagen einer Ethik der Achtsamkeit. Frankfurt am Main 2001;
Annelies van Heijst (2011): Professional Loving Care, An Ethical View of the Healthcare Sector. Peeters – Leuven;
Philips, Susan; Benner, Patricia (1994): The Crisis of Care, Affirming and Restoring Caring Practices in the Helping Professions. Georgetown University Press.

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

Helen Kohlen (2009): Conflicts of Care, Hospital Ethics Committees in the USA and Germany. Campus Verlag;
Hartmut Remmers & Helen Kohlen (2010): Bioethics, Care and Gender, Herausforderungen Fur Medizin, Pflege Und Politik (in German). V&R Unipress GmbH;
Olthuis, Gert; Kohlen, Helen; Heier, Jorma (2014): Moral Boundaries Redrawn. The significance of Joan Tronto’s Argument for Political Theory, Professional Ethics, and Care as Practice. Peeters Publishers 2014;
Kohlen, Helen: Care transformations – attentiveness, professional ethics and thoughts towards differentiation. Commentary, Nursing Ethics 18, March 2011: 258-261 (peer-reviewed);
Kohlen, Helen: Sorge als Arbeit und Ethik der Sorge – Verbindungslinien zwischen beiden wissenschaftlichen Diskursen. In: Conradi, Elisabeth; Vosman, Frans (2016): Praxis der Achtsamkeit: Schlüsselbegriffe der Care-Ethik. Fankfurt, New York: Campus, S. 193-225;
Kohlen, Helen: Sterben als Regelungsbedarf, Palliative Care und die Sorge um das Ganze. Ethik in der Medizin, 2016, 28(1), 1-4.

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

First, on a rather theoretical level, I think it is important to continue talking about the ethics of care and render visible what it can do in contrast to other theories.
Second, on a rather empirical level it needs to be shown what comes up when issues of concern are debated from a care ethics perspective as for example, in the area of bioethics, the debate about embryonic research.
Third, within the field of medicine and nursing it is important to refine the questions within an ethics of care for specific areas like neonatal care or dementia care.

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

I want to thank you very much for the excellent work you are doing in this area, currently, especially for organizing the Care Ethics Research Consortium.
From a teaching perspective I wonder, what could be done to distribute all the good work on the ethics of care that is already out there and I have the idea of writing a textbook for graduate students.
From a research perspective, I would be interested in a European Research Project on the Ethics of Care in Clinical Care.

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.

April 8, 2011

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.