‘Exploring the biggest taboo in our society and the only certainty we all share: death.’
Today I am honoured to be part of the Wellcome Book Prize 2018 Blogtour, with an extract from With The End In Mind by Dr Kathryn Mannix.
The novel is one of six shortlisted books and is described as ‘a tender and insightful exploration of one of society’s major taboos.’
Palliative care consultant Kathryn Mannix makes a compelling case for approaching death not with trepidation but with openness, clarity and understanding. With The End In Mind is published by William Collins (Harper Collins)
Below you will find details about the shortlisted novels and the prize, as well as an excerpt from With The End In Mind.
Wellcome Book Prize
The shortlist for the 2018 Wellcome Book Prize celebrates the best new books that illuminate our encounters with health, medicine and illness.
Chaired by artist and writer Edmund de Waal, this year’s judging panel have selected a rich and varied shortlist – one novel, one memoir and four non-fiction books – connected by our complex relationship with mortality. The titles explore bereavement, loss and the fragility of life, consider medical innovations developed to escape death, and reflect on why we should talk more about dying.
The shortlisted nominees are:
- Stay With Me by Ayọ̀bámi Adébáyọ̀ (Nigeria) Canongate Books
- The Butchering Art by Lindsey Fitzharris (USA) Allen Lane, Penguin Press
- With the End in Mind by Kathryn Mannix (UK) William Collins, HarperCollins
- To Be a Machine by Mark O’Connell (Ireland) Granta Books
- Mayhem: A memoir by Sigrid Rausing (UK/Sweden) Hamish Hamilton, Penguin Books
- The Vaccine Race by Meredith Wadman (USA/Canada) Doubleday, Transworl
The winner will be revealed at an evening ceremony on Monday 30 April at Wellcome Collection.
Told through a series of beautifully crafted stories taken from nearly four decades of clinical practice, her book answers the most intimate questions about the process of dying with touching honesty and humanity. She makes a compelling case for the therapeutic power of approaching death not with trepidation but with openness, clarity and understanding.
With the End in Mind is a book for us all: the grieving and bereaved, ill and healthy. Open these pages and you will find stories about people who are like you, and like people you know and love. You will meet Holly, who danced her last day away; Eric, the retired head teacher who, even with Motor Neurone Disease, gets things done; loving, tender-hearted Nelly and Joe, each living a lonely lie to save their beloved from distress; and Sylvie, 19, dying of leukaemia, sewing a cushion for her mum to hug by the fire after she has died.
These are just four of the book’s thirty-odd stories of normal humans, dying normal human deaths. They show how the dying embrace living not because they are unusual or brave, but because that’s what humans do. By turns touching, tragic, at times funny and always wise, they offer us illumination, models for action, and hope. Read this book and you’ll be better prepared for life as well as death.
Throughout my career in medicine, it has been clear to me that we bring our own ideas and expectations with us in any encounter with the Big Questions. Whether that is birth, death, love, loss or transformation, everyone frames their experience through the lens of what they already know. The trouble is, whereas birth, love and even bereavement are widely discussed, death itself has become increasingly taboo. Not knowing what to expect, people take their cues instead from vicarious experience: television, films, novels, social media and the news. These sensationalised yet simultaneously trivialised versions of dying and death have replaced what was once everyone’s common experience of observing the dying of people around them, of seeing death often enough to recognise its patterns, to become familiar with life lived well within the limits of decreasing vigour, and even to develop a familiarity with the sequences of the deathbed.
That rich wisdom was lost in the second half of the twentieth century. Better healthcare, new treatments like antibiotics, kidney dialysis and early chemotherapy, better nutrition, immunisation programmes and other developments radically changed people’s experiences of illness and offered hope of cure, or at least postponement of dying, that was previously impossible. This triggered a behaviour change that saw the sickest people being rushed into hospital for treatment instead of waiting at home to die. Life expectancies increased; many lives were enhanced and lengthened.
Yet these welcome healthcare advances can only remediate us up to a point; beyond the point of saving us to live ‘well enough’ there is a point of futility. Here, technology is deployed in a new deathbed ritual that is a triumph of denial over experience. The death rate remains 100 per cent, and the pattern of the final days, and the way we actually die, are unchanged. What is different is that we have lost the familiarity we once had with that process, and we have lost the vocabulary and etiquette that served us so well in past times, when death was acknowledged to be inevitable. Instead of dying in a dear and familiar room with people we love around us, we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.
This is a book about real events. Everything described really happened to someone, sometime, in the last forty years. To preserve the anonymity of the people described, almost all the names have been changed, along with their jobs, and sometimes their gender or ethnicity. Because these are stories rather than case histories, sometimes the experience of several people is woven into a single individual’s narrative, to allow specific aspects of the journey to be depicted. Many of the situations may seem familiar because, despite our averted gaze, death is unavoidable, and these accounts will have parallels in many people’s own experience.
Because most of my career has been spent working in palliative care, it is inevitable that most of these stories are about people who have had access to palliative care specialists. This generally means that any challenging physical symptoms have been engaged
with and usually reasonably well controlled, and emotional symptoms are being addressed. Palliative care is not solely concerned with dying: excellent symptom management should be accessible to people of all diagnoses at any stage of their illness, when they require it. That is the broad remit of the specialty of palliative medicine. The majority of our patients, however, are in the last months of their lives, and this gives us a particular insight into the way people live when they know that they are dying. It is that part of our experience that I am seeking to convey in these stories: how the dying, like the rest of us, are mainly getting on with living.
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.
For more >> Purchase Link ~ With The End in Mind
Dr Kathryn Mannix has spent her medical career working with people who have incurable, advanced illnesses. Starting in cancer care and changing career to become a pioneer of the new discipline of palliative medicine, she has worked as a palliative care consultant in teams in hospices, hospitals and in patients’ own homes, optimising quality of life even as death is approaching. She is passionate about public education, and having qualified as a Cognitive Behaviour Therapist in 1993, she started the UK’s (possibly the world’s) first CBT clinic exclusively for palliative care patients, and devised ‘CBT First Aid’ training to enable palliative care colleagues to add new skills to their repertoire for helping patients.
Website ~ http://withtheendinmind.co.uk/
Twitter ~ @drkathrynmannix