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Reform Magazine | May 18, 2024

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An act of love? - Reform Magazine

An act of love?

Gerontologist Professor Malcolm Johnson once opposed assisted dying, but came to believe that the terminally ill should be given a choice. With two new bills in favour of euthanasia due for debate in the UK and Scottish parliaments this year, he explains why he changed his mind

As an academic gerontologist researching ageing and the lifespan, I, like the overwhelming majority of other gerontologists, had paid little professional attention to death and dying.

But in 1988, I was approached by Dr Gillian Ford, one of the founders of St Christopher’s Hospice, to create an Open University course on end-of-life issues. After much effort, we not only persuaded the Department of Health to fund the production of the course, but we also completed an entire half-credit undergraduate course (Death, Dying and Bereavement) by 1993. It has been continuously available since then and has been studied by more than 16,000 students.

During the three years of production, we were immersed continuously in matters related to dying. It was an immensely difficult human task but also very rewarding. We had many collaborators, including the charismatic Dame Cicely Saunders, widely considered the founder of the modern hospice movement. She promoted the humane care of dying people with the evangelical zeal of the deeply committed Christian she was.

At that time and later, I was persuaded of her orthodox Christian view that all life was sacred and should never be taken. She added to this dictum a phrase that has become the mantra of the hospice and palliative care movement: “The taking of life is never justified because we now have the ability to deal with all pain.”

This unsustainable claim was made extensively by those who opposed Lord Joffe’s Assisted Dying for the Terminally Ill Bill in 2006. Joffe’s bill and subsequent attempts to legalise assisted suicide in Britain failed to win sufficient support to be enacted. During 2012 however, fresh consultations were carried out on new bills drafted by Lord Falconer at Westminster and MSP Margo Macdonald at Holyrood, to help improve safeguards and address various public concerns. On the back of these consultations, two private members’ bills – proposing new powers for doctors to help terminally ill patients end their lives – will be tabled in the House of Lords and Scottish Parliaments this year. I hope they will succeed.

In the late 1990s, I took a closer interest in the real-life experience of dying and undertook a series of projects, training staff in care homes for older people, assisting them to understand the social and psychological processes of dying. My team and I taught them about the history of death, the cultural diversity of approaches to death and elders, the importance of symbolic rituals such as funerals, contemporary meanings of spirituality and how to deal with professionals including funeral directors, doctors and clergy.

My own research on older people at the end of life led me to understand the anguish that many people experience as they face imminent death. In today’s society 80 per cent of all deaths are of people over 65 and two-thirds are over 75. So, for the first time in history, death is in the province of old age. With endless time to think but not much time to live, there is an inescapable preoccupation with reflection about one’s own life.

For some, all is harmony and contentment. But most find that unconfined time for life review takes them into the deeper recesses of memory. Too often the dominant recollections are of dreadful experiences – things done by others to harm them; actions taken but deeply regretted; things always promised yet still undone.

This leisure to reflect is often accompanied by disability, with much physical pain, which takes away the capacity to right these wrongs. So much guilt and self-loathing: some see this as unforgivable sin, while others with no belief simply feel tortured. Yet they rarely find a sympathetic and safe listener to relieve the profound distress to which I have given the name “biographical pain”.

The contemporary landscape of death is not one of pain-free transition, assisted to a comfortable end by palliative care. Many older people are provided with little for their physical pain. Such services are highly rationed (mostly to younger people and those with cancers). Too many die in physical pain that goes untreated or unreached by medication, or in unrevealed biographical pain. Without the availability of a chance to be relieved of their anguish, it seems right to allow those whose lives are a living hell to exit – if they wish it – with careful provisions and dignity.

These observations have made me a critical friend of the hospice movement and no longer able to share the position of Cicely Saunders’ or those of many churches on assisted death. I no longer accept arguments about the nobility of pain or the restrictions on our free will imposed by a God who will choose the hour and the manner of our death, regardless of its human cost. This is not a God of love and forgiveness. Nor do I give credence to the often weak and selective biblical entreaties of theologians who overlook the deaths of martyrs and followers, the lives given by the faithful and the ultimate gift of life by Jesus. Moreover, churches no longer treat suicide as a sin – and the law has permitted it for over 50 years. These and many other arguments are persuasively and cogently made by Professor Paul Badham in his book, Is There a Christian Case for Assisted Dying?

When you have witnessed it, you know that the sustaining of life that is finished is awful to behold. Good palliative medicine and end of life care can certainly bring relief and comfort: we need to make it available to all who can benefit. For those who are beyond its reach and and can bear it no longer, it is humane to allow them to seek death. To be the enabler of a person’s choice to leave it all behind in a controlled and honest way – assisted dying – is a supreme act of love. To argue that God requires you to go on existing when all meaningful life has gone, is in my view, pious cruelty.

Malcolm Johnson is emeritus professor of health and social policy at the University of Bristol and visiting professor of gerontology and end-of-life care at the Centre for Death and Society, University of Bath. He has served the United Reformed Church as convener for Church & Society and as convener for Education & Learning


This article was published in the February 2013 edition of  Reform.

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