Departing with dignity: the ultimate palliative care is a true act of love

Gerontologist Malcolm Johnson once opposed assisted dying, but he now believes that the terminally ill should be given a choice

February 19, 2009

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 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 11,000 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 claim has been made extensively by those who oppose Baron Joffe's Assisted Dying for the Terminally Ill Bill.

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, the contemporary meanings of spirituality and "biographical pain", 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. 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 and an incapacity 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. Such services are highly rationed (mostly to younger people with cancers). More to the point, the indications are that 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 this appalling anguish and the possibility of forgiveness, it seems right to allow those whose lives are a living hell to exit with careful provisions and dignity.

These observations have made me a critical friend of the hospice movement and no longer able to share Saunders' position 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.

When you have seen it, you know that the sustaining of life that is finished is awful to behold. You know that 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.

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