The challenge of suffering, especially at the end of life, is all too real for so many people. All of us want a good death. As Parliament considers assisted suicide again, those of us opposed to any change in the law need to make the case for something better. One of the main ways we do this is by championing palliative care, which had its origins through a wonderful woman who possessed deep Christian convictions.
Dame Cicely Saunders first trained as a nurse, and then as a medical social worker in the 1940s, at a time when medicine placed little weight on care for those who were dying, many of whom were neglected in their final weeks. Having been profoundly affected by her experience of caring for a terminally-ill man for two months, she gave her life to the care of those who were dying, and at the age of 33, began training as a doctor at St Thomas’ Hospital, London.
Today she is considered the founder of the modern hospice movement: in 1967, she founded St Christopher’s Hospice, which promoted expert pain and symptom control, alongside clinical research into looking after people who were dying.
Dame Cicely’s approach looked beyond just medical needs, and she pioneered the concept of ‘total pain’. Patients would, of course, suffer from physical pain in their final weeks. But they might also be suffering from psychological pain, as they worried about what was to come. They might be experiencing relational pain, anxious about the effect of their illness on their friends and families. And they might also be suffering from spiritual or existential pain, fearing what might come after death, or indeed, not believing there was anything at all.
The neonatologist John Wyatt, who specialised in palliative care, has written: “It is a common observation of palliative care doctors that when physical pain does not seem to respond, despite the administration of powerful medical treatments, it is highly likely that psychological, relational and spiritual factors are involved, and these must be addressed. Many of the tragic high profile cases of apparently ‘uncontrollable pain’ that are used by campaigners to promote the need for assisted suicide, seem to be cases where psychological, relational and spiritual factors dominated.”
Palliative care and Christian faith
Pioneers like Dame Cicely combined the latest research into painkilling medicine with meticulous attention to detail, caring for symptoms like dry mouth, nausea and itching. Patients had access to human contact and were encouraged to enjoy hobbies and their own interests. Family members were encouraged to be present as often as possible. All patients were invited to simple worship services, often attending in their beds or wheelchairs, in the chapel which stood in the middle of the hospice.
Underpinning her advocacy was her strong Christian faith, with its emphasis on the immutable and intrinsic dignity of human beings, irrespective of life’s cirucmstances. She said herself: “you matter because you are you, and you matter to the end of your life.”
Through the work of St Christopher’s, Cicely Saunders’ expertise fundamentally changed the way society looks after the ill and the dying. Her biographer, Shirley du Boulay, wrote that she proved that “it was possible to live a lifetime in a few weeks; that time is a matter of depth, not length; that in the right atmosphere and with pain controlled so that the patient is free to be herself, the last days can be the richest, they can be a time of reconciliation that makes the dying peaceful and the mourning bearable.”
Palliative care today
Her constant watchword was: “there is so much more to be done”. The UK has consistently ranked as one of the world leaders in palliative medicine, and as of 2022, every patient has a legal right to access specialist palliative care in England and Wales. But research carried out by the Cicely Saunders Institute suggests that currently 215,000 people miss out on end-of-life care every year, a figure which is likely to rise with our aging population.
It was estimated in 2015 by Deloitte that around £4.5 billion was spent annually on end of life care. It represented just over 1% of the NHS budget for that year (and is considerably less than we spend in the UK on research trying to find a cure for cancer). The question for our nation is not around financial resources: it is around priorities.
The All-Party Parliamentary Group on Hospice and End of Life Care wrote in a report in January 2024 that NHS commissioning of hospice services is “currently not fit for purpose”. They also described a “postcode lottery”: there are more than 220 hospices in the UK, and they rely upon charitable donations to exist, receiving more money from the charity sector than they do from the government. In more economically-deprived areas, people were less likely to be able to donate to their local hospice. Such inequality among those who are most vulnerable is a tragic commentary on our society.
CARE has always championed palliative care and the hospice movement, because alleviating suffering and showing compassion matter. There will always be hard cases in a fallen world where disease and sickness exist. But we want to show the love of God as best we can by caring and supporting people at the very end of their lives. As Dame Cicely herself said, “We will do all we can not only to help you die peacefully, but also to live until you die.”