In the summer of 1990 my brother, Matty, was knocked over by a car. He was 16 and I was 17 and we lived in a little village in Yorkshire above the pub our parents owned. I knelt by Matty’s unconscious body in the road and travelled with him in the ambulance. I could tell by the demeanour of the ambulance men how serious it was. “We’ve got a bad one here,” said the driver, into the radio. The other man was slicing off Matty’s T-shirt which was now entirely dark red. “Why is there so much blood?” I asked, “I can’t see any cuts.” “It’s coming from the back of his head, lass,” he said. “Talk to him, love, keep talking. Keep him with us.”
I laid my hand on Matty’s bare, bloodstained chest and I talked and talked until we arrived at hospital. Then Matty was rushed away from me. I filled out forms with a nurse and rang my parents. I can still hear my mother’s voice as I delivered the information that would throw a grenade into our lives.
After my parents arrived a surgeon came to see us. “I’ve saved your son’s life,” he said. “We don’t know yet whether that was the right thing to do.” He told us that the next 48 hours were crucial. We commenced what the newspapers called our bedside vigil. More talking. I held Matty’s hand and watched his chest rise and fall as a ventilator pumped air into his lungs. All we wanted was for Matty not to die. Moving around the hospital in the night I stumbled into the chapel. I was an atheist but had been to a Catholic school and I knew the prayers. I prayed that my brother would not die. I believed we were in a binary situation. I only knew about life and death, I knew nothing of the in-between.
Now—older, wiser, sadder—I know that I was praying for the wrong thing. It would have been better for my poor, lost brother and for everyone who loved him if he’d died when he was knocked over by the car. Twenty years, even 10 years previously, that’s what would have happened. It would have been a terrible thing for us and our community. There would have been an enormous funeral with much wailing. We would have left flowers by the side of the road and scattered Matty’s ashes in the fields where he played football. It would have been a tragedy. Instead we were catapulted into a cruel and unusual situation that defied all logic, and challenged much of what we thought we knew about life and love.
Matty never fully regained consciousness. His eyes opened and he had periods of wake and sleep. In the very early days I could get him to move his head towards me if I danced around him, but he suffered life threatening epileptic fits which knocked out even these tiny bits of progress. He couldn’t go to rehab as there was nothing there to rehabilitate, so after nine months we brought him home. Eventually we built a bungalow extension on to the back of the pub. Despite no supporting evidence, we believed that if we loved Matty enough then we could heal his damaged brain.
Popular culture encourages us to think of a prolonged disorder of consciousness as exciting and romantic. Television dramas and crime novels are full of people in comas. The plot hinges on whether they will or won’t wake up and spill the beans. Usually they do, and if they don’t, they die and there is a funeral. It is all far more clear cut than the reality of caring for someone in a persistent vegetative state.
"Who is changing Sleeping Beauty's urine bags?"
Sleeping Beauty could slumber for years and be woken with a kiss that makes her sit up and smile. The people missing from her story are the ones who have been cleaning her teeth, and turning her so she doesn’t get bedsores. We never see the physios who would be working to reduce the spasticity in her limbs. Who is opening the cans of liquid food—it looks like baby formula—for Sleeping Beauty so she can by fed by tube? Who is emptying the urine bags? She is probably constipated, because that’s what happens when a body doesn’t move in any intentional way. Who is putting the suppositories up her bum? Who is hoisting her body into the shower trolley to keep her clean? I can tell you something. Sleeping Beauty isn’t beautiful anymore and the people looking after her may well be in deep distress.*** We have lost our way with death. Improvements in medicine have led us to believe that a long and fulfilling life is our birthright. Death is no longer seen as the natural consequence of life but as an inconvenient and unjust betrayal. We are in an age of denial.
Why does this matter? Why not allow ourselves this pleasant and surely harmless delusion? It matters because we are in a peculiar and precise period of history where our technological advances enable us to keep people alive when we probably shouldn’t. Life or death is no longer a black and white situation. There are many and various shades of grey. We behave as though death is the worst outcome, but it isn’t.
Many years after the accident, when I wrote a book about it called The Last Act of Love, I catalogued what happened to me as I witnessed the destruction of my brother. I detailed the drinking and the depression. The hardest thing was tracking our journey from hope to despair. I still find it hard to be precise about exactly when and how I realised that Matty would be better off dead. I know I moved from being convinced that if I tried hard enough I could bring Matty back to life, to thinking I should learn to love him as he was. Eventually I asked myself the right question: would Matty himself want to be alive like this? Of course, the answer was no.
Tony Bland, a victim of the Hillsborough disaster, had been the first person to be allowed to die from withdrawal of artificial nutrition and hydration in 1993. Matty became the 14th case in 1998. He was 24. He had 16 years of full life and another eight of being in a persistent vegetative state—an ugly expression for a profoundly terrible condition. We were told it would take between seven and 10 days for Matty to die but it was 13 days between the removal of his feeding tube and his final breath. I just about held it together for the first 10 days but I couldn’t deal with the extra time. You could call what happened to me a breakdown, I suppose. I’d already had a few. That’s not what it felt like though. Sitting by Matty’s bedside, unable to cope with how much I longed for his death, I felt like I was being scythed into thousands of tiny pieces.
Henry Marsh is a surgeon who has seen this from the other side of the operating table. In his excellent book Do No Harm, he describes what happens to the family of someone in a prolonged disorder of consciousness as collateral damage. He also points out that it is fairly easy to save a life with emergency brain surgery—you drill some holes and let out some blood—but that the question of what constitutes meaningful life is much more difficult to grapple with. Surgeons don’t spend much time looking at their failures. They operate from a place of hope, wishing and willing for the best, and why not? With no expert knowledge, that’s what we would all want for our stricken loved one, that the maximum effort is made.
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Now try: Philip Ball on growing a second brainJoanna Bourke on how we're dying onlineProspect's podcast with Joanna Bourke, Philip Ball and Cathy Rentzenbrink
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The problem is, there is no plan for what happens to the unsuccessful outputs of the surgeon’s scalpel. Philosophically, psychologically, legally and morally we have not caught up with our technical ability to keep the heart beating when the brain barely functions. In this new reality, it is an act of love to bring about someone’s death, but not one that sits easily with anything we think we know about the nature of either love or life.I had so many fears about writing my book. I thought no-one would read it—too miserable and too specific, I thought—but I got bundles of beautiful letters from readers who have themselves witnessed a long and complex death, and have wrestled with the realisation that the thing they most want is for the person they most love to die. I was terrified that people whose loved ones had died outright would be angry with me and accuse me of ingratitude. The opposite happened. People who had been suddenly bereaved by accidents thanked me for showing them that it could have been worse. Indeed it could.
The saddest letters are from those who are still stuck in awful situations. The woman who is trying to bring about the death of her daughter while also looking after her teenage grandchildren, the couple whose son is still alive 20 years after an accident at work left him unable to do anything except breathe. Many of my correspondents are enduring the after effects of head injuries, but I also hear from people whose relatives are living with dementia or have had a stroke. People who would previously have been allowed to slip away are having a feeding tube shoved into them and can live on for months with no real quality of life: “He would have hated being like this… she would not have wanted her grandchildren to see her like this… If we’d known then what we know now we would have let her go… I can’t believe I’ve ended up in a place where I want my father to die. How did this happen?”
*** My friend Jo’s mum died last year. She accepted she was at the end of her days and didn’t want to eke out every last drop of existence— she wanted pain relief, but didn’t want anything to prolong her life. She died at a beautiful hospice. Jo is grieving yet is also able to feel glimmers of pride that she was there to be with her mother and ease her final months, and that she honestly answered the questions of her own daughters and supported them through their first significant loss.
This is so important. A vicar told me recently that there is an increasing trend to not let children see coffins, to only allow them to come to a celebratory memorial service. As a result, one little boy didn’t understand why grandad wasn’t at his own party.
That’s no good for any of us. We can’t protect ourselves and those we love from death. We need to accept it as our last event. If we’re lucky, it will come at the end of an interesting life. If we’re really lucky we’ll have people we love to hold us in our final moments.
"One little boy didn’t understand why grandad wasn’t at his own party"
The conversation moves on. There are voices that challenge the Sleeping Beauty myths. Recent books by Akhil Sharma, Lu Spinney and Clover Stroud show us the grim reality of severe brain damage. Medics like Atul Gawande, Henry Marsh and Paul Kalanithi have questioned what it means to be alive. More broadly, there are some really good books about both death and grief being published and I am keeping With the End in Mind by Kathryn Mannix and Grief Works by Julia Samuel on the shelf for future reference and consolation. I’m not suggesting we should all be hyper vigilant to the possibility of terrible accidents but an awareness that our lives are finite can help us to appreciate what we have now.As Marcus Aurelius says: “In short, know this: Human lives are brief and trivial. Yesterday a blob of semen; tomorrow embalming fluid, ash.” We will all die but we don’t need to treat death like the enemy and we must not let our fear of becoming ash lead us into prolonging our lives beyond any meaning, purpose or pleasure.
