How can we prepare for a ‘good death’?

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.

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How can we attune to the spiritual and religious needs of young people in hospice contexts?

Reverend Kathryn Darby is the Chaplain at Birmingham Children’s Hospital and co-author with Paul Nash and Sally Nash of Spiritual Care with Sick Children and Young People.

In this blog, she explores the roles chaplains play for sick children and young people who are staying in hospices or hospitals. 

How can we attune to the spiritual and religious needs of children and young people in a hospital or hospice context? This question was recently sharpened for me in my role as a chaplain at the Birmingham Children’s Hospital when in conversation with a young person receiving treatment for mental health. He said words to the effect of, “You just get into that headspace where you don’t matter, you don’t deserve anything”. The need for all of us to attend to our mental health has been highlighted in British society recently – e.g. the grieving and recovery process of Princes William and Harry in relation to their mother’s death and debate within the political arena about mental health provisionNo one is invulnerable to the stresses and bruising of life that can result from illness, bereavement, or loss.  At times, mental health issues, such as anxiety, low mood, or eating disorders can escalate for young people leading to hospital care. Young people and their families experience distress, suffering and heartache but can find the support that they need for recovery and growth. Continue reading

Rethinking hospice chaplaincy: A spiritually motivated response to raw human need

Reverend Dr Steve Nolan is the chaplain at Princess Alice Hospice in Esher and the author of ‘Spiritual Care at the End of Life.

Here, he explores new ways of understanding the roles of hospice chaplains. 

I never met Dame Cicely Saunders. The nearest I came to her was when I visited the chaplain at St Christopher’s, the south London hospice she established. My tour of the hospice had reached the old chapel, and as I chatted with the chaplain, I caught a glimpse of her as she walked slowly passed the chapel door.

Whether Dame Cicely should be considered ‘the founder’ of modern hospice care could be debated. But her dynamism and drive had a significant hand in shaping the direction and values of the nascent movement. Yet she was not the only dynamic woman to have influenced the history of hospice care.

In 1843, Mme Jeanne Garnier opened a home for the dying in Lyon. In Dublin, Sister Mary Augustine inspired first Our Lady’s Hospice for the Dying, which opened in 1879, then further hospices in Australia and Great Britain. And in New York, Mother Alphonsa established St Rose’s Home in 1899. Working independently of each other, these women shared not only a common purpose but a motivation that was inspired by their spiritual beliefs.

Spirituality was clearly one of the key motivators that drove Dame Cicely. In the late 1940s, she converted from agnosticism to a deep evangelical Christian faith, which transformed the way she understood her work. Caring for the sick had always been a priority; following her conversion it became a religious calling.

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“Getting over it” – Processing grief in a way that works for you

Gone in the Morning: A Writer's Journey of Bereavement

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

Parting Gifts – Geoff Mead reflects on the value of palliative care for a loved one

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

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