With the End in Mind by Kathryn Mannix (pbk)

Reviewed by Annabel

Shortlisted for the Wellcome Book Prize in 2018 this book, which is full of wisdom and compassion, was one of the highlights of a strong shortlist. Although it didn’t win, this is a book that everyone would benefit from reading – it helped me a lot.

Kathryn Mannix is a pioneering doctor, a consultant in the field of palliative care, taking care of people who are dying. Making patients comfortable, easing their pain and nausea, are just some of the physical ways in which their suffering can be helped. There are countless new developments in medicine to allow doctors to finesse end-of-life treatment to permit patients to live without pain and to die with dignity. But it is helping patients and their families and loved ones to understand the process of dying, and dispelling the taboos around it that make this book such a valuable and compelling read.

Forgive me for getting personal, but I wish I’d had this book before my mum died of cancer some years ago. I would have understood better why she couldn’t eat or do anything at all really in the later stages, how she clung on to consciousness until my brother arrived back from abroad, and then she slipped off quietly in the night. Having been at the hospital for 48 hours, I’d left to see my daughter and get a few hours of proper sleep. Her partner was still with her, but I’ve felt guilty ever since at not being there. Mannix explains how even an unconscious patient may wait to die until the hubbub of being surrounded by loved ones has gone away. I was let off the hook, and tears flowed freely at times as I read this book.

Mannix describes around thirty cases over the forty-year course of her career, splitting them into six thematic sections. From the earliest days of her career when she was learning from others about cancer care, through deciding to specialise in palliative care, these pages are full of wonderful caring doctors, nurses and carers, whether in hospital ward, hospice or at home. Many of the cases included do involve cancer, and often secondaries, but each patient’s experience and situation is different and you can’t help but feel for all of them – and their families. Young Billy arrives at his mother’s deathbed shackled between two prison warders and proceeds to upset everyone.  It’s only when the brave doctor persuades the warders to undo the handcuffs and wait outside that Billy can jettison his bravado, hug his mum and say his goodbyes. There’s the teenager with leukaemia who needs help sewing a memory cushion to leave behind on the family rocking-chair, and the headmaster with motor neurone disease who worries about getting things done. Most touching of all perhaps are Nelly and Joe, each believing the other doesn’t know about the cancer that’s killing Nelly, and needing permission to talk to each other about it.

‘I love our job,’ I remark as we stand in the hospital lift with a newborn baby in a cot, proud parents and a midwife escort.
‘What do you do?’ asks the midwife, searching for our roles on our name badges.
‘Much the same as you,’ replies [colleague] Sonia as the doors open and we walk out. We turn and smile at the new family and the midwife, whose shocked mouth describes a perfect O as the lift doors close.
The thing is, Sonia is right. We are the deathwives. And it’s a privilege, every time.

It is interesting that Mannix has added a CBT (cognitive behavioural therapy) qualification to her CV, and uses CBT in palliative care to help patients stay active, combat depression, recognise and deal with panic attacks and so on. It obviously worked well for those described in this book. At the end of each of the thematic sections is another short chapter entitled ‘Pause for Thought’ which asks us to evaluate our own experiences of dying in others and think ahead towards our own death, and challenge some of our own preconceptions. For some readers, this will be useful; for me, their location placed at the end of sections rather disrupted the main flow of the case studies, especially as some of the questions within seem rather blunt on the page. I realise, though, that if they had been put in a self-help section at the end they wouldn’t necessarily have the same impact.

When published in hardback back in December 2017, this book was subtitled “Dying, Death and Wisdom in an Age of Denial”. Now in paperback, the subtitle has changed to “How to Live and Die Well” which is softer, and I hope wins this important book many more readers.

Annabel is one of the editors of Shiny New Books.

Kathryn Mannix, With the End in Mind (William Collins, 2017). ISBN 978-0008210915, 352pp, paperback.

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