How to have a ‘good death’ like Deborah James
Pets, sports cars or champagne — make your final days your own
Sunday July 03 2022, 12.01am, The Sunday Times
'I am not brave — I am not dignified going towards my death — I am simply a scared girl who is doing something she has no choice in, but I know I am grateful for the life that I have had," Dame Deborah James wrote in May.
For all her fears as death approached, the podcaster, who campaigned to raise awareness of bowel cancer, managed to live out her final weeks with astonishing spirit and humour. She juggled her “death to-do list” with sipping champagne in the garden, wrapped her frail limbs in fabulous dresses in emerald and gold, arranged tequila for her funeral and defiantly applied her scarlet lipstick to the end.
As a palliative care doctor, I’m endlessly astounded by my patients' capacity to savour their final days with a passion and intensity that can put the rest of us to shame. As time slips through their fingers, people find ways to be incandescent with life.
…….We helped an elderly husband arrange a surprise date night for his dying wife. At an NHS plastic table transformed by a white linen tablecloth scattered with rose petals, they relived the romance of their courting days. We’ve helped patients set off in wheelchair taxis to dip their toes in the sea, write and record songs for their families, prepare letters for every one of their children’s important birthdays to come, or take an open-top MG sports car in British racing green for a spin at speeds I don’t want to think about.
…….The phrase “a good death” is often bandied about by well-meaning commentators, as though there is some secret elixir for dying “well” that eliminates pain and suffering. To her great credit, Deborah never pretended that dying was easy. From her moment of diagnosis at age 35, she was fiercely honest about it all, including the “hellish” moments.
In my experience, this kind of candour can be enormously helpful. When a patient feels too scared to confront — let alone talk openly about — their terminal diagnosis, fears only fester. I often ask patients: “What is the one thing you are most afraid of?” Invariably, the answer isn’t being dead per se, but the imagined horrors of the dying process. A conversation unfolds in which they learn that there are no upper limits on the doses of drugs we can give and that dying is rarely as dreadful as people fear. For the first time, they may start to feel a sense of control over their future.
Practically speaking, planning ahead gives you the best chance of authoring how your life ends. Deborah, for example, died last week, aged 40, precisely on her terms — at her parents' house, in the heart of her family, with domestic life quietly unspooling around her — by laying out her wishes clearly.
Where would you like to be at the end — home, hospital or hospice? Who would you like to be with you when it happens? Sometimes patients regret being swept along by an impersonal medical machine that pushes endless rounds of gruelling treatment. Writing an advance care plan is the best way to ensure that what matters to you is placed centre stage. Appointing a legal power of attorney means that if you lose the capacity to make decisions for yourself, someone else can do so on your behalf.
Consider asking to be referred to a palliative care team as early as possible. We can help with logistics such as finding carers, equipment, financial advice, “just in case” medications to store at home, and psychological support for adults and children. So too can your GP, hospital team or charities such as Macmillan, Cancer Research UK and Maggie’s…….
It’s never too early to chat with your family about your views around your own death. It can feel daunting — but an infinitely worse conversation is being called out of the blue by a doctor at 2am who breaks catastrophic news and asks: do you have any idea what they would have wanted? How much better to know the answer.
……. Talking, sharing, planning and leaning on others can all help our final days brim with love and tenderness.
Rachel Clarke is an NHS palliative care doctor and author of Dear Life: A Doctor’s Story of Love, Loss and Consolation, published by Little, Brown
Rev Martin Down writes: Very interesting article - as far as it goes. But what next? I know that Rachel Clarke, and I assume that Deborah James, would say, “Nothing. Death is the end.” But then what if they are wrong? Then this approach to death is dreadful.
Neither Rachel nor Deborah can prove that death is the end. But we can prove that death is not the end: Jesus rose from the dead, a fact of history as certain as any historical event can be. So if that is true, then who knows better what lies beyond death but the Son of God, who died and rose again. He said that when we die we go to one of two places: a place of torment - not physical torment because we are obviously disembodied at this point - but torments of remorse and despair. The other place is a place of peace and joy, at one with God, with Abraham, with Jesus and all those who have lived and loved him. And between these two places there is a great gulf fixed which no-one can cross from one side to the other.
So what a terrible thing to die without being warned of this great gulf. It has to be our job to warn people of this as well as help them to endure the pains of earthly death. How we neglect that! God help us.
Read Martin Down on this topic further here