My brother, who lives in a L’Arche community alongside members with a learning disability, has given me a booklet entitled “Celebrating Life in the Face of Death”. It is written by L’Arche members as a guide for those who assist their frailer brothers and sisters when they are dying. In the introduction it says: “The lives of many people with an intellectual disability are steeped in the experience of multiple losses. For some this can be a source of lifelong distress. It is always important to support and minimise the pain of necessary losses. However, some people … are also able to grow in wisdom and self-acceptance. Perhaps the main precondition for this maturity is not being left alone. Being alongside people with learning disabilities, especially as they face their own death, often reveals the essential quality of relationships and shows us what matters most in our lives.”
These words brought back the memory of visiting my brother in the L’Arche community in the Polish city of Poznan and being introduced to a man with Down’s syndrome who was dying. What impressed me was the love with which he was surrounded by others in the community, even though he could no longer move or speak to them. It is the sort of experience we would all wish for when our own time comes and it is a far cry from the kind of dying some experience these days in hospitals in this country.
Tuning in to the car radio the other day I happened to hear a programme concerning “the new Elizabethans”. It was about the life and work of the late Dame Cecily Saunders, pioneer of the hospice movement, and it reminded me what an extraordinary woman she was: utterly determined and single-minded in her desire to bring compassion as well as good medical practice to the lives of the dying. The programme’s producer emphasised several times that Dame Cecily, a committed Christian, was totally opposed to any suggestion of euthanasia. In the 1960s, when the hospice idea was first becoming known, the word “euthanasia” was not being tossed about by some politicians and doctors in the familiar way it is today, but Dame Cecily probably had an intuition that this would happen. Hence her courageous plan to frame an alternative to it.
I blogged recently about the controversial Liverpool Care Pathway. I think Dame Cecily would have been deeply suspicious of a form of medical intervention that first determined someone was dying and then, by a combination of drugs and withdrawal of food and fluids, brought it about. One of our more knowledgeable and eloquent blog commentators, Paul Priest, posted the following in response to that blog: “The LCP is accelerating the deaths of many, murdering the few and denying virtually all the chance to come to the end of their natural life in analgesic consciousness, where they can die with the dignity of saying goodbye to their loved ones. It’s barbaric, it’s euthanasia and it’s a grave evil.”
The L’Arche booklet includes many affectionate anecdotes about the death of community members. One assistant wrote: “I was with Joe when he died and I have come to see that as a great privilege. Joe taught me not to be afraid, just to be silent…through his deep trust he has deepened mine.” This is the kind of dignity in dying that Dame Cecily had in mind and it has nothing to do with euthanasia.