With the end in mind - Dying, Death and Wisdom in an Age of Denial

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With the end in mind - Dying, Death and Wisdom in an Age of Denial

With the End in Mind, written by renowned UK palliative care specialist Kathryn Mannix, is the exploration of one of the biggest taboos in our society and the only certainty we all share: death. Told through a series of powerful stories taken from Kathryn’s clinical practice, interwoven with her own professional journey, this extraordinary book sends a vital message to the living and answers the most urgent, intimate and fascinating questions about the end-of-life process with touching honesty and humility.

Kathryn Mannix took some time to speak with Palliative Matters.

With 30 years’ experience as a palliative medicine pioneer, what do you love most about working in the industry?

Palliative care is such a fulfilling career: we meet people at a very important time in their life, when the living that remains feels precious, and we help to restore their well-being. This often surprises patients, who assume that 'palliative care' means feeling worse and then dying. In fact, palliative care means detailed attention to enabling people to feel as well as possible, within the limits of their illness: palliative care may have different goals, and may involve less invasive treatment, but it is certainly not 'less care.' 

One of the joys of palliative care is working in tight-knit and supportive teams. We attend to physical symptoms, emotional distress, role and relationships within family, friends (and even work for some of our more energetic patients), whilst enabling patients and families to process and manage their existential and/or spiritual distress. This involves a level of intimacy with patients that is an enormous privilege. 

I have been fortunate to work with fantastic colleagues throughout my career. We have supported each other, given each other courage, told each other off (or was it only me that got told off?), laughed and cried together, and celebrated our multi-disciplinary strengths - always stronger as a team than as individuals. Any time I felt out of my depth at a bedside, I also felt the reassurance that between us, our team would find a way through the challenge. I am so grateful to them all.

What inspired you to write the book ‘With the End in Mind’?

Honestly? Exasperation! As a senior consultant, I realised with a sinking heart that my dying patients were still troubled by the same myths and misunderstandings about dying that I used to hear as a trainee 30 years earlier. Dread of horrible symptoms; fear of having difficult conversations with families; failure to prepare. I kept thinking that 'someone' should write a book that describes normal dying, a book to shoot the myths and give some first-hand witness accounts of what happens as we become too ill to survive; as we enter a terminal illness phase; and as we take our last breaths. How generally bearable it is; how the process is identifiable, manageable, gentle. No-one wrote the book. And then I realised that perhaps I was well-placed to write it...

What I set out to do was simply to restore the level of familiarity with the dying process that people used to have, when life-expectancy was shorter and people usually died at home. In those days, people in their 30s and 40s had generally seen several deaths, usually of their elders but also of siblings, friends and even children. They recognised the process, and had a language for discussing it. All that rich wisdom is being lost as more sophisticated medical treatments enable us to save lives and restore health to people who previously might have died in their prime. This means that our sickest people are in hospital, and so death at home has become less usual. Of course, the medical developments are welcome, but a reduced public familiarity with dying is an unanticipated consequence.

The book consists of a series of individual people's stories (all anonymised) that describe how they approached their final illness and how they dealt with symptoms, communication within families, preparing for dying, and saying farewell. It also describes the process of dying in some detail, whether at home, in hospital, or in hospice. It's not complicated or medical, and I hope the stories engage the reader and make him/her care about the individuals who are described. I've also included lots of conversations that I, or my colleagues, have had with our patients, to show people how they, too, might engage in such conversations.

What are the key messages you would like readers to take from your book?

Readers are already telling me that they have found the book helpful and comforting, which is exactly what I had hoped. By knowing more about the process of dying, and understanding the sights and sounds around a deathbed, bereaved people have told me that they recognise their own experience and have come to appreciate that they saw a peaceful, normal death. This insight has helped their bereavement. Dying people have told me that they are less afraid. And readers are surprised by the humour and joy that is part of the last part of life. Although I have written a book that describes dying, reviewers agree that it is a book about relishing living.

I hope that people will read this book and, by knowing more, will fear death less. I hope that clinicians of every profession who work with the dying will realise we have a duty to inform and prepare patients and their dear ones, and then to narrate the process to them as it unfolds, much as midwife prepares a Mum and birth partner, then accompanies and reminds them of what they already know to assure them that all is well. I hope that people who encounter normal, gentle human dying will feel brave enough to share their own stories to counterbalance the 'shock, horror' media reports of occasional bad deaths.

Death is a biological process. We can recognise it; we can manage it; we can accompany people through it; and we can all be better prepared by sharing good death stories, and by having that conversation with our nearest and dearest about What Matters Most to us.

When listening and writing the stories, how did this effect you personally and what have you learnt from documenting different stories?

I have written patients and situations 'out of my head' since I was a medical student. It was a way of helping me to make sense of what I was experiencing, and of contemplating the enormous occasions I had the privilege of witnessing or sharing: births, difficult decisions, diagnostic triumphs, mistakes, ethical conundrums, deaths. I didn't realise it at the time, but as an apprentice in medicine I was also becoming an apprentice writer.

All the things in the book really happened. Some were profoundly uplifting; others were challenging and sad; some were shocking. All of them made me ponder the amazing resilience of the human spirit. The process of writing, collecting and preparing my stories for publication was wonderful. I spent a year in the company of those fondly-remembered patients and their families, and the teams in which I served, and I enjoyed our time together all over again.

What changes have you noticed in society’s perception of death over the course of your career? Has it improved?

Over the course of my career, palliative care and the discipline of palliative medicine have become mainstream and this is a huge step forward. Colleagues in other disciplines like oncology, cardiology, respiratory medicine and ICU were initially a bit cautious in engaging with us, but integration of palliative care into services that deal with life-threatening illnesses means that we can support people who are dying, and also those who are 'sick enough to die' but whose treatment is still aimed at saving their lives if possible. We are happy to be the 'insurance plan.' If the patient recovers, we will celebrate with them, but if they die despite the combined team's best possible resuscitative care, then we can help to ensure that what matters most to those patients and families has not been overlooked while cure was being sought in vain. I think that's a huge change in medical thinking: hoping and working for the best, whilst anticipating and planning for the worst at the same time.

In terms of society, if anything it's harder to engage people in discussing death, and we are even starting to see a drift away from the D-words. 'Passed away,' 'late,' 'dear departed' and other euphemisms are increasingly used in the media, and a kind of political correctness is making it feel awkward to use the straightforward vocabulary of death. This is a concern because if we lose the vocabulary, it will become even more difficult to discuss the last part of life and our hopes for the way it may happen.

On the positive side, there are some 'kick-back' movements that are working hard to restore our contact with our mortality. Death Cafe is a great example. Death discussion amongst younger people seems healthier, perhaps in a counter-cultural response to the emerging taboo. Organ donation is growing (join up to register here) and Australians are being urged to have advance care planning conversations, so that what matters most can be respected and acted upon.

Through the different stories told in your book, did culture play a significant part in the dying process?

My stories are set in the UK which has a rich, multi-cultural society. Ethnicity, faith, and belonging to a particular community can play an important part in both the way we die well, and in the way we can misunderstand each other despite good intentions. One story tells how the influence of a deeply religious Nigerian community changed the way a secular Caucasian family dealt with a terminal illness; another tells of how a devout Muslim family misunderstood the well-intended prognostication of a kind non-Muslim doctor, and how they came to trust British medicine again. Palliative care services seek to understand their patients' world-view, the better to help them, and cultural diversity brings strengths, challenges and opportunities to understand each other better.

To celebrate National Palliative Care Week, what are three things that matter most to you?

I'm a daughter, wife, mum and friend - 'family' is partly about being related and partly about the people we choose as our inner circle. My family, whether actually related or not, is a huge source of strength and support to me, and their well-being is my motivation. If I am sick enough to die and you are looking after me, please help me to look after them, too.

Nature and the beauty of the world is something that gives me inspiration and peace of mind every day. I hope I will always find the inner resilience to appreciate the wonder of being alive, even as my life reaches its end. I try to be mindful; occasionally I succeed. If you are the team caring for me, please put me near a window with a view of trees and sky.

I love language and ideas. If I am ever in your care, I'd like the radio tuned to a channel that talks about ideas: literature, science, philosophy (simple!), history, nature. And I'd also like periods of deep silence, to contemplate and play with words on paper or in my head. Please make sure I have access to an A4 pad and some sharp pencils.

And tea. I know that's four things. But if you're looking after me, you need to know. Or you could count the references to tea in my book: that will give you a pretty good idea.

Kathryn has compiled excerpts from ‘With the end in mind’ for Palliative Matters readers – read them here.

‘With the end in mind’ is available for purchase here.