On the books: Nick Wilde offers some insights from his reading on end-of-life issues

‘One can theorise about death but when it comes close to you then the reality is very different.’

I know I am dying
But why not keep flowering
As long as I can
From my cut stem?
(Helen Dunmore, ‘My life’s stem was cut’)

After the death of my parents, brothers and a friend during a fairly short period, I began to contemplate my own death. I found the Quaker Concern around Dying and Death (QDD) group, started by Alison Leonard out of the concern that we should have a Quaker view of death rather like we havea Quaker view of sex. Eventually I joined the steering group, which organised courses and gatherings at Woodbrooke. On behalf of QDD I also facilitated sessions at Yearly Meetings in Bath, London and Warwick. In 2017 we realised that the wider world was discussing dying and death more, with the rise of the Death Cafe movement. We were also getting older, so Quaker Life became involved. The Google Group continues, to which Friends post items of interest to others.

Death Cafes were started by Jon Underwood in 2011, and now have thousands of meetings around the world. I have facilitated several, including online during lockdown. Over this period I have read many books on death and dying, and thought it might help to share some of these.

My brother died of throat cancer and Let’s Talk: A story of cancer and love by Evan Hunter (also known as the US crime writer Ed McBain) describes Hunter’s own experience with the same disease. Another personal experience of cancer is found in A Tour of Bones: Facing fear and looking for life by Denise Inge, which started out as a history of charnel houses and became the story of the cancer from which the author died.

Having listened to Atul Gawande’s Reith Lectures on Radio 4 in 2014, I read his Being Mortal: Medicine and what matters in the end. What is it like to get old, and how has modern medicine changed this? What I remember most about the book is the two graphs. One shows a bumpy line as we get one ailment, then recover via medicine, then get another and so on. The second graph shows what used to happen: a slow, probably shorter, decline and then death.

In the same year I read Margaret McCartney’s Living with Dying: Finding care and compassion at the end of life. Written by a Glasgow GP this is a very down-to-earth read on the subject, and is a very practical book. She discusses quantity versus quality, with a chapter called ‘Too many tablets’. There’s a lot of common sense in this book.

Henry Marsh’s two books Do No Harm: Stories of life, death and brain surgery (2014) and Admissions: A life in brain surgery (2017) are written from the point of view of a neurosurgeon. Marsh writes from his own personal experience in the UK, the US, Ukraine and Nepal. The dilemma about whether to operate or not is always there, and weighing up whether the patient will be worse off after the operation is very real, especially if the relatives say they will get you if the patient dies.

If there isn’t enough blood for you in Henry Marsh then Fragile lives: A heart surgeon’s stories of life and death on the operating table (2017) by Stephen Westaby should make up for it. This is by way of what they call a health warning. Some of these books do not make easy reading, although most of them give guidance and comfort to those of us approaching old age and inevitable death. Heart surgery is, like brain surgery, right at the forefront of medical expertise. There is always the question of whether, if it can be done, should it be done. Surgeons should not behave like God and decide who shall live and who shall die, but they can hold your life in their hands.

Written from the perspective of someone getting older Richard Holloway’s Waiting for the Last Bus: Reflections on life and death (2018) is a personal account that I reviewed in the Friend (26 October 2018). Richard Holloway is a former head of the Anglican Church in Scotland, so provides an especially religious view of dying and death.

In 2019, Rosie Deedes published Into the Depths: A chaplain’s reflections on death, dying and pastoral care, about working as a prison chaplain and as spiritual care advisor in a hospice. Helping people at the end of their lives, either in prison or in the hospice, is a challenging yet beautiful experience. This book, which I also reviewed in the Friend (1 November 2019), has much in common with Rachel Clarke’s Dear Life: A doctor’s story of love, loss and consolation (2020), which is the most recent book I’ve read, being a moving account by a doctor through her training, personal and professional life. Starting as a TV journalist she now specialises in palliative care. Reading the book you see what a gift she has. She sees her job as making a good death a reality, or, more truly, making the last bit of life as good as it could be. Moving a grandson’s birthday forward a few days or, as with the old lady who said she was going to die on Thursday, asking ‘What would you be doing if you weren’t going to die on Thursday?’ ‘Playing bridge’, so Rachel arranges a bridge party with her old friends, and the lady died two days later. I cried more in this book than any other. The backdrop is her doctor father’s bowel cancer, which portrays the reality of the experience and the recommendation that we all should have an advance directive, with instructions for those caring for us at the end of our lives. ‘But I haven’t done mine yet’, she writes, acknowledging the difficulty. One can theorise about death but when it comes close to you then the reality is very different. Rachel writes movingly of her father’s death. The fact that Rosie is a Christian and Rachel an atheist make no difference to their approach, caring and concentrating on the dying person.

The Leeds Area Meeting book Assisted Dying: A Quaker exploration (2016) provides a very balanced assessment of the subject from a Quaker point of view. There is a useful summary of the law at the back. Much slimmer is the booklet by Quaker Quest, Twelve Quakers and Death, which is a short read, useful for discussion groups. Assisted Dying: Who makes the final decision? The case for greater choice at the end of life (2014), edited by Lesley Close and Jo Cartwright, represents the view of the campaigning group Dignity in Dying.

One sentence by Denise Inge stood out for me. ‘Contemplating mortality is not about being prepared to die, it is about being prepared to live.’ This is why we should think and talk about life and about death.

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Comments

Thank you Nick for such a useful review of books on the subject of (good) dying.
Another that I would recommend is “With the end in mind” by Kathryn Mannix. She is a Palliative Medicine Pioneer. She has no personal belief in an afterlife. Her description of a good peaceful death matches the experience of Rachel Clarke. Both work in the Hospice world in England.

Martin Shallcross. Shaftesbury Meeting

By martin shallcross on 28th January 2021 - 10:08

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