Watch the full 28 minute interview below, or alternatively watch a series of short clips from the interview in the playlist below that.
Carlo Leget is Professor in Care Ethics and Endowed Professor of Spiritual and Ethical Questions in Palliative Care at the University of Humanistic Studies in Utrecht, Netherlands. His book Art of Living, Art of Dying is a contemporary guide for discussing end of life and existential questions. Here, he considers end of life issues in a hospice context and reflects on the importance of a model for enabling a ‘good death.’
Some twenty years ago I entered the world of patients who are dying and their families. Until that time I had been studying theology, trying to find the meaning of life in conversation with the great minds of Western thought. I wrote a PhD thesis on the relation between life on earth and ‘life’ after death in the theology of Thomas Aquinas, and hoped to continue my work by building a bridge between the ancient wisdom of the Church and problems in contemporary health care.
The higher one’s ambitions are, the more one risks to lose. During my participatory observation as an auxiliary nurse, caring for dying patients and their families, I virtually did not find a single point of connection between my ambitions and everyday reality. The people who were cared for and died in the nursing homes I worked in, were hardly thinking about life after death. Even ethical issues about autonomy, non-maleficence and benevolence I had read so much about and which might work as a point of departure did not seem to play any role at all.
An extract from chapter 1 of Gone in the Morning: A Writer’s Journey of Bereavement by Geoff Mead.
Recently, I was having a beer with a friend. He asked me what I was writing these days and I told him that I’d written a memoir about the last 18 months of Chris’s life, about 150 blogs and a bunch of poems, mostly about grief. He gave me a quizzical look and asked a pointed question: “You are getting over this thing, aren’t you?”
“I’m not trying to get over it,” I replied. “I’m trying to get through it.”
He took in my reply but said nothing.
“Writing seems to help,” I added.
“Really?” he said, and changed the subject.
It was a fair challenge, and not meant unkindly. I’ve been thinking about it, off and on, ever since. Why had I been so adamant about not wanting to get over Chris’s death? What had I meant when I said that I was trying to get through it? Continue reading
Anyone who has been bereaved through chronic illness will know that anticipating the death of a loved one prefigures the grief that is to come. We feel the loss even before it has occurred but try to contain it somehow for the sake of the one who is dying as we try to wring every last moment out of what time remains. Yet, in the midst of medical procedures and the comings and goings of friends, nurses and carers, it can be hard to sustain the one relationship that we most care about.
My wife Chris Seeley died aged 48, from the effects of a brain tumour on 3rd December 2014. With the support of the Penny Brohn Centre and Cotswold Hospice at Home, I looked after her at home for the last seven weeks of her life. Despite her physical infirmity, she wanted to sleep in her own bed; to be surrounded by her own paintings and furniture; to make art; to eat well; to be convivial; to be in nature; and to be expansive until the moment she died.
Chris Seeley, Geoff’s late wife
Continuing to do as many of the things she loved as we could manage was hugely important to Chris and it comforted me to know that I was doing my best to make it possible. Some things were easy to arrange and others – especially those which involved leaving the house – took a great deal of effort to accomplish. Now she has gone, I look back on these memories like wild strawberries, all the sweeter because they were the last of the season.
We discovered that friends were delighted to be asked to help with expeditions, domestic chores, cooking, making art and occasionally providing a night’s respite for me. It’s almost impossible to over-estimate how exhausting it is to care for someone round the clock and it was wonderful for Chris and I to have the opportunity to stay at Penny Brohn together for a few days, just two weeks before she died. We both knew that she didn’t have long and we had been struggling to talk about it.
On the last day of our stay, we sat holding hands in adjoining armchairs, wrapped in blankets, with the lights dimmed as we listened to the sublime tones of the Benedictus from Karl Jenkins’ Mass for Peace. It wasn’t yet time to say goodbye but deeply stirred by the music, we both wept for the cutting short of her life and the grief that was to come.
It’s hard to be with someone you love when they are dying. But it is also a privilege: an opportunity to say and do what is needed to prepare for the moment of separation; a chance to resolve matters and find peace in each other’s arms; a lesson in the harsh beauty of love.
Each person’s encounter with loss and bereavement is unique and I wouldn’t presume to tell anyone else what to do, but looking back on the experience of losing Chris, I see just how important it is to get support for yourself when looking after someone else. I’ll always be hugely grateful for the opportunity that hospice and palliative care gave us to come together before we had to part.
Geoff Mead is the author of Gone in the Morning: A Writer’s Journey of Bereavement.
More books on bereavement can be found here.
Karen Murphy has worked in hospice chaplaincy for twenty years and has represented chaplaincy at national and international level. She is President of the Association of Hospice and Palliative Care Chaplains (AHPCC). Here, she argues the case for hospice chaplains.
The Association of Hospice and Palliative Chaplains held our annual conference in May and considered the following statement: ‘chaplains are worth having because….’ As a group of skilled, trained and experienced chaplains, we had no problem in accounting for our role and purpose in a palliative care setting. There is a view, however, that in these secular days, the role of the chaplain is no longer valid or necessary. The daily conversations that chaplains share with patients and families soon render this argument redundant.
A patient shared with me recently that she had never had a religious faith, although she often thought it would be of value. Her long held view was ‘when you are gone, you are gone’. Now, facing her mortality having being diagnosed with terminal cancer, her thinking has shifted and for the first time, she is considering her life against an absence of faith. Our conversations are not concerned with my attempts to convert her to my way of thinking or persuade her to find a faith or belief, but to support her in this deeply challenging time. I can enable her to think through her questions and listen. At this point the value of chaplaincy becomes clearer as we offer spiritual listening, which is very different to counselling or social work listening. Chaplains have the capacity to instigate and support conversations that get to the root of someone’s spiritual distress and need. We are not afraid to ask the difficult questions about life’s meaning and purpose, and in my experience, patients seek out those with a belief in order to make sense of the spiritual disturbance and trauma experienced. A patient’s relative expressed this very clearly in a recent conversation, saying: ‘My mother, in her last weeks of life, wasn’t concerned with whether or not the chemotherapy had been successful, or what drugs she would need to be pain free. She trusted the doctors for this. What she valued was the time of the chaplain to help her think about life’s meaning and how to live and die well’.
There is a view that chaplaincy services are a waste of time and resources in a stretched and under –funded health service. The rationale for this view suggests that if patients identify spiritual need, they are likely to have religious faith, therefore will have the support of a local faith community. This view ignores the fact that patients faced with a terminal prognosis, while describing themselves as non-religious, will experience spiritual distress which is unfamiliar and frightening. Chaplains are an essential tool of our health care services which provide distinctive and relevant care for patients who are asking the big questions of life which have never been asked before. The positive impact of chaplaincy based on evidence and research is already emerging, with projects demonstrating the need for fewer GP appointments, reduced medication and a greater sense of well-being to live in the face of impending death. This body of research is growing and will offer to those cynical of chaplaincy, a quantitative and qualitative foundation for the chaplain’s continuing contribution to palliative care services.
For more information on Chaplaincy in Hospice and Palliative Care and to buy a copy of the book, follow this link.
“My grandma isn’t a dinosaur. Why are the dinosaurs in this book teaching about death?”
“My dad’s not a leaf. I don’t understand what falling leaves have to do with him dying.”
“My aunt died. Why is everyone saying she’s in a better place?”
Metaphors, symbolic language, euphemisms. These all present challenges for many children with special needs who process information in a concrete manner. The quotes above encapsulate some of the feedback we have heard during our work in hospice care and in special education, as parents describe their struggle with explaining death and dying to their children. We wrote I Have a Question about Death: A Book for Children with Autism Spectrum Disorder or Other Special Needs to address these challenges, and to create a book that parents and caregivers can read with all children. Continue reading
What picture pops into your head when you hear the word ‘death’?
Chances are, a pretty uncomfortable one. But crucially, one that you understand. You understand immediately what death means, and all the sadness, grief and emotion that is associated with it.
Do you know what a three-year old thinks of when he hears the word ‘death’?
Nothing. Because, chances are, he has never heard of it before. He doesn’t know what it means! He doesn’t even know that such a thing exists…
In April 2009, I was faced with having to explain to my three-year old just that: death. My husband had suffered a totally unexpected fatal heart attack; no family history, no previous symptoms, aged only 34. And our son Alex was the only person with him at the time. He managed to raise the alarm and get an ambulance there, but sadly Martin died at the scene. All of a sudden I found myself a young widow and a single Mum to two grieving children: Alex, aged three, and Olivia, aged only 11 months…
“He’s still so young – he won’t remember.”, and “He won’t understand.” were the well-meaning phrases I heard most often at the time. But I quickly learnt that these preconceptions couldn’t be further from the truth. I remember Alex lying in bed one night, not too long after his daddy’s death, and innocently asking “How many more sleeps until Christmas?” – I tried to work it out in my head, only for him to follow this with “And how many more sleeps until I have to die Mummy?” – I was completely taken aback… Continue reading
We talked to Rosalind Bradley about her new book, her motivations for writing it and her relationship with the concept of death.
What motivated you to write A Matter of Life and Death?
The trigger for this book was my mother’s sudden death while she was staying with us in Australia, on holiday from England. It was a few days after ‘9/11’. One day we were strolling around the Sydney Opera House, the next day she was in Emergency Department following a cardiac arrest. I can still recall the physical and emotional numbness I felt that day and for many months afterwards. Her death completely shocked me as there had been no signs of any ill-health.
I had just started a new job, which certainly suffered as I tried to come to terms with this new reality. I am convinced now that the emotional numbness I felt inside me, which later manifested itself in chronic back pain, was the build up of grief inside me. In the wake of my mother’s death and the death and destruction from ‘9/11’, I became intensely curious about death and gradually, through a long period of spiritual and physical renewal, I accepted what had happened.
Several years later, after two close friends who were siblings died, I felt even more driven to come to terms with what is death? I knew I had to face up to my own fears and decide how I wanted to live the rest of my life. Exploring the mystery of death in all its rawness and complexity and gleaning some meaning from it led me to create A Matter of Life and Death.
In this extract from Helping Children and Adolescents Think about Death, Dying and Bereavement, Marian Carter draws upon her experience as a chaplain who has worked in hospital and hospice settings to suggest ways that we can help children come to terms with death. She questions ‘What is death?’ and goes on to describe the different experiences that children have with it, and how we can reflect upon these experiences to improve our emotional support. The book, which looks at how children comprehend the death of a loved one, pet, or even their own death, places a particular emphasis on the importance of listening to the child or adolescent, and adapting your approach based on their responses.