We don’t have to like it but we do have to talk about it - a personal view by Toby Scott

Toby Scott, Head of Communications and Campaigns, Dying Matters Coalition

There is a famous picture of John Wesley on his deathbed, although it dates from several decades after the event. The picture tells us that John Wesley died in his usual bed, surrounded by family and friends, and with the satisfaction of a long life lived well. His final words – “The best of all is, God is with us” – suggest a man at peace, knowing and accepting that death is close, and not in any apparent pain. He was 87, but had been fit and active into his 86th year.

It’s remarkable that what most people wish for, when asked to consider a good death, probably still looks a lot like what we see in that picture. We know from surveys that most of us want to be at home when we die, we want family and friends to be with us, and our biggest wish is to be pain-free as death approaches. We might not know it, but most of us want to die like John Wesley.

So why then do 47% of deaths occur in hospital, according to the latest ONS data for England and Wales? Why do 55% of us not know the funeral wishes of those close to us? Why have only one third of us made a will (something John Wesley also did)?

The short answer is that as a society we have largely forgotten how to talk about death. John Wesley had little choice about dying in his own bed. There were no hospices in the modern sense, no care homes and no hospital that you would go to if you could choose to go elsewhere. Doctors cost money, and there was no point calling one if someone was obviously dying. If he did administer medicine to ease any suffering, that cost money too.

Death was closer to people’s lives then. You could die of a minor infection, an accident at work, a fire at home (a fate John narrowly escaped), from unclean water or poorly stored food. In larger families it was unusual for all the children to reach adulthood – John was one of 19 children, seven of whom died in infancy. Death was still a cause for mourning, but it was more common, and expected, and understood as a part of life.

Thanks to the NHS, we no longer need to worry about the cost of hospitals, doctors or medicines. And thanks to modern healthcare, and remarkable scientific breakthroughs, we are all living longer, and staying well and active longer. But in doing so we’ve lost sight of the fact that death is a part of life. We worry that talking about it will upset someone, or we just worry. And by not talking, we don’t make and share our plans. One reason so many people die in hospital is that they never told anyone they wanted to be anywhere else. With support from health and social care professionals, hospice at home services and family and friends it is possible for someone to stay at home throughout a final illness, pain free and active for as long as possible. But this requires planning, and that requires talking about it.

The Dying Matters campaign was set up at the request of the then Government in 2008 precisely because it found that not talking about death was preventing improvements in end of life care. The decisions we need to make about our end of life care, our wills, and our funerals and legacies are far wider than John Wesley faced. But it is not so complex that it can’t be done, and the sooner we start the sooner it’s done. Once our plans are discussed, and made, and shared with those who need to know, we can get on with the rest of our lives.

We live, and we will die. We will grieve, and we can support those who mourn. We don’t have to like it, but we need to talk about it.