BOOK REVIEW: With the End in Mind – Dying, Death and Wisdom in an Age of Denial by Kathryn Mannix

BOOK REVIEW: With the End in Mind – Dying, Death and Wisdom in an Age of Denial by Kathryn Mannix

HarperCollins Publishers
December 2017
Paperback, $27.99
Reviewed by Natalie Salvo

Non-Fiction / Sociology & Anthropology / Death & Dying


Dying is something we will all experience some day. But for many of us the very act is something that is quite mysterious. It’s also assumed by many to be a painful and dreadful occurrence. Enter Kathryn Mannix, a consultant in palliative medicine and a doctor who has been working with the dying for several decades. In her debut book, With the End in Mind, she draws together some poignant and fascinating stories from her former patients and some experiences that we all can learn from.

It may seem odd that, after half a lifetime of keeping company with the dying, anyone should wish to spend even more time immersed in telling their stories. It may even seem presumptuous to offer those stories in the hope that readers will choose to accompany dying strangers across the pages. And yet that is what this book sets out to do…
In the main, I am offering the reader my eyes and ears, my seat at the bedside, my place in the conversations, and my perspective on events. Where there are lessons for us, these are the gifts of the people whose stories are collected here. Where there are mistakes, they are entirely my own.
It’s time to talk about dying. This is my way of promoting the conversation.

Some readers may be unfamiliar with palliative care, a speciality discipline in medicine often provided in a hospice or the patient’s own home where the emphasis is not on curing a disease as the patients are at a point where they are considered incurable. Instead the work of the palliative team is to provide support to patients in order to help alleviate their symptoms and to maximise their quality of life through things like pain management and mental services like Cognitive Behaviour Therapy (CBT) to ease feelings of emotional distress, anxiety, depression and hopelessness. It is quite reassuring and illuminating to learn more about the palliative care process because while it may be common knowledge to medical practitioners, a lot of it can be seem alien and unknown to the general public.

Louisa’s rapid response to CBT was astonishing and it piqued my interest in this patient-empowering approach to managing emotional distress. A few years later I was to train as a cognitive behaviour therapist, and to discover the satisfaction of using CBT to enable palliative care patients to rediscover their inner resilience, to challenge their unhelpful thoughts and to take steps toward coping again in a life still to be lived, despite their advancing physical illness.

Another big revelation in this book was learning that there are a pattern of events that typically occur in death, just like there is a pattern that exists when a woman goes into labour. Mannix makes the comparison between midwives and palliative care staff who are like “death” midwives who guide the dying patient through the proceedings. In many cases, the patients are told about what happens in dying – where a life-threatening illness progresses to a point where the patient becomes increasingly tired, lacks energy and is often not awake. At this point the patient will dip in and out of consciousness and their breathing slows down until the point where it eventually stops all-together. The process is actually quite a gentle one that is not unlike going to seep and this knowledge and understanding can be quite empowering and comforting to some people.

The nurse, our leader and I walk to the office. Our leader says to me, ‘That is probably the most helpful gift we can ever give to our patients. Few have seen a death. Most imagine dying to be agonising and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see something terrible. I never get used to having that conversation, even though it always ends by a patient knowing more yet being less afraid.’

There is no question that death is a difficult subject. It can be loaded with many different feelings and emotions like grief, anger, denial, sadness, hope, acceptance, and hopelessness. In this volume, Mannix groups together stories based on different themes, so that readers can dip and out of the proceedings if they wish. It’s also interesting to see how many times a patient’s own thoughts can change over the course of their illness, like in the following case where a fiercely independent head teacher named Eric thought he wanted to die sooner rather than later due to his motor neurone disease. That was, until he came to value his life after one powerful, final Christmas at the hospice:

When we proposed moving Christmas, Eric grinned. ‘There will have to be a tree…’
On a windy autumn evening the family arrived in Christmas jumpers and fancy clothes, carrying gifts and musical instruments. Their host greeted them at the front door of the building in his bed, pushed by two nurses wearing Santa hats, who delivered him, along with his oxygen cylinder and tubing, into the training room the catering team had set up like a five-star restaurant. Off-duty staff in formal dress waited on the family; turkey and trimming were served; Eric’s oxygen was turned off briefly so the pudding could make a glorious, flaming entrance. After dinner, those of us on duty could hear guitars, Christmas carols and lots of laughter coming from the party…
He [Eric] commanded me [Kathryn] to sit down and listen. ‘This is important,’ he said. ‘People need to understand this. You need to understand this. I wanted to die before something happened that I couldn’t bear. But I didn’t die, and the thing I dreaded happened. But I found that I could bear it. I wanted euthanasia, and no one could do it. But if they had, then when would I have asked for it? Chances are I would have asked too soon, and I would have missed Christmas. So I’m glad you couldn’t do it. I’ve changed my mind, and I wanted to tell you. I was angry with you because you’re part of The System that says no to assisting with dying. But you weren’t saying no to dying, you were saying yes to living. I get that now. I’m a teacher and you need to tell other people this for me, because I won’t be here to tell them.
And then I was dismissed from the head teacher’s presence.

Mannix should be applauded for dealing with this difficult subject matter with such a sensitive hand. In every case the person that dies does so with amazing grace and dignity, even though their journeys are completely different. In some instances there is outright denial right up until the end; and for others they believe that they have to protect their family members by concealing their illness. There are also some examples of religious devotion and the desire to leave behind a legacy or some other such thing for people to remember them by.

I learned from this experience how families develop their understanding of the meaning of an illness over time. When the diagnosis was first made, this devoted family would have stopped at nothing to keep their daughter alive for as long as possible. And yet, quietly and lovingly over time their position shifted. They purchased a grave site, they focused on tiny details that yielded enormous benefits to their girls, they recognised the diminishing odds of adding quality to life and they bowed with grace and tender dignity to the inevitable, ensuring that Helena’s death was as enhanced by love as the whole of the rest of her life.
They also determined to ensure that other families dealing with SMA (Spinal Muscular Atrophy) should have better access to condition-specific palliative care. They fund-raised, (often by walking and requiring friends to walk) huge distances in Heli’s beloved wilderness and they established the Helena Nursing Team of specialised nurses supporting SMA patients and their families.
When I asked Lil for permission to tell their story here, many years after these events, she was eager that I should record this fact: in the hospital canteen queue that very day at work, the person in front of her was a nurse specialist whose badge said ‘Helena Team.’ She didn’t know who Lil was, she may not even have known who Helena was – but evidence of her legacy filled Lil’s heart.

Death can be a taboo subject for some people. There may be times where older people want to discuss matters with their families but the younger folk may dismiss them and want to evade the subject. Mannix promotes the need to have this difficult dialogue and also advocates for better communication overall. At the end of the book she offers a template for people to use to discuss quite intimate matters with loved ones by including prompts for the dying individual to use like: what they’ve appreciated, what they love, what they feel the living shouldn’t worry about, their hopes for the future, how they wish to be remembered and what they want to be forgiven for. There are also a number of resources including a number of support groups and charities, although the emphasis is on those located in the United Kingdom where Mannix works.

With the End in Mind is a rich, compassionate and detailed book on death and dying. It is told in a similar vein to Atul Gawande’s Being Mortal and should help people come to grips with a topic that need not be feared or fought against. Thanks to books like With the End in Mind, one can empathise with the experiences of others and learn to accept death as an inevitable part of life. We can also discover that we are all capable of having our own “good” death thanks to the tireless efforts and hard work of practitioners like Mannix and her colleagues.

BOOK REVIEW: With the End in Mind - Dying, Death and Wisdom in an Age of Denial by Kathryn Mannix

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