Wellcome Book Prize 2018: With the End in Mind
We are born, and we will die: these are the two events that connect us all. While we celebrate one of these days every year, the idea of death inspires anxiety, fear - or perhaps even a misplaced sense of injustice - in many of us. Dr Kathryn Mannix's book With the End in Mind: Dying, Death and Wisdom in an Age of Denial, which has been shortlisted for the Wellcome Book Prize 2018, is a campaign, aimed to educate people about the realities of dying and encourage us to move from a place of denial to one of understanding. Her 'weapon of choice', as she calls them, for this campaign, are stories.
We meet Eric, a Head Teacher, with motor neurone disease, who overcomes his suicidal thoughts by learning that his failing body doesn't necessarily make him a burden to his family; Louisa, who sinks into a depression and nearly misses her daughter's wedding day, until her ward neighbour, British Nigerian Millie, brings some light into her life, despite her own terminal illness; Fergus, who only found love and a child later in life, and now faces losing them both, who postpones treatment to be able to spend a last birthday with his son without violent chemotherapy-induced nausea; Namrita, a devout Muslim, who first refuses traditional pain medication until feeling sure that the doctors caring for her understand her view; Alex, a young man with testicular cancer, who never thinks he can be as brave as his counterparts in the 'Lonely Ballroom'.
The stories are gathered from a career spanning four decades, dedicated to working with people with incurable, advanced illnesses. At a time when palliative care was a relatively new discipline, Kathryn Mannix was a pioneer; she opened the first cognitive behavioural therapy clinic exclusively for palliative care in the UK, possibly the first worldwide. We see CBT in action with her patient Mark, who suffers from breathlessness as a result of his condition. The problem being, that breathlessness leads to panic (an adaptive survival mechanism that we all possess to protect us from suffocating, choking, drowning). Mark can't avoid breathlessness entirely, but working with CBT techniques he is able to put an end to his panic attacks, and he triumphantly declares in his last moments: 'You must be so f***ing proud of me! I'm dying, and I'm not panicking!'
Mark's ultimately peaceful end is - thankfully - a common theme of the book. We learn that the majority of dying, contrary to our common fears of indignity, pain and traumatising our loved ones, can often be a calm process: a gradual shortening of breath, of lengthening pauses between breaths. Often, when a person dies, they are so deeply unconscious in their last moments that they cannot feel any pain. We know from those that have come out of comas, however, that they might be able to recognise familiar voices. And so the family and friends standing vigil around the hospital bed, a permanent motif throughout the book and around whom most of the drama unfolds, are perhaps more helpful than they might believe.
What stands out about the work of Mannix and her dedicated colleagues, is the willingness to understand the patient's perspective, to - within the boundaries of safe patient care - respect their autonomy, their wishes and to empower them to make the right decisions for themselves and their loved ones. The role of the deathwives, as Mannix and her colleagues consider themselves, is to be honest and present. People fight back in various ways, through denial, resistance, anger, withdrawal, when they feel they are not understood. Being understood and having your experience respected is seemingly what people need most in their most difficult times; after this, we see them flourish and transcend. The individuality of each case is key: where one story teaches us the chaos caused by denial, another teaches us it may be desperately needed in order to see someone through to their last breath peacefully; we see how last precious days are worth any treatment to fight for, in some cases, whereas in others the prolonging of life is cruel.
Mannix's patients vary considerably in illness, age, religion, race and gender, but their commonality is clear. At the edge of life, though experiences and attitudes may differ, all seem easy to understand, framed within certain recurring questions and statements: how can I leave people behind; will everyone be OK; what am I going to miss? I forgive you; I forgive myself; I love you.
The people we encounter throughout this beautiful book, through Mannix's caring professional eyes, might seem extraordinary. But, Mannix enthuses, this would be a misperception: these people are not extraordinary, they are ordinary people dying ordinary (though varied) deaths. What is read as unbelievable grace and bravery, is a level of compassion and love - for the self and for others - that is made possible through making peace with mortality, impermanence and dying.