Aisha, a young mother of two children, knew she was going to die and would be leaving her family behind. Who would talk to her about her fears, encourage and help her to build a memory box of pictures and letters for her children and encourage her husband to face up to what is going to happen? Who really knew how to manage her pain and the frightening early warning signs of slipping away that she was experiencing? It was St Christopher’s Hospice, in South London, that cared superbly for her.
Hospice care is one of the UK’s outstanding success stories. The birth of the modern hospice movement grew from the vision and commitment of Dame Cicely Saunders who founded and opened the first modern hospice, St Christopher’s, in 1967. Since then modern palliative care has grown into a worldwide movement that has radically changed the way we approach death and dying.
Motivated by her own faith in Christ, Dame Cicely built a movement that cares for people of all faiths and none. Hospices care for the whole person, aiming to meet all needs — spiritual, physical, emotional and social.
Hospice and palliative care is the specialist field where there are people who will do this and such care is given free of charge. Yet most hospices are charities that struggle for funds and many people still reach the end of their lives without the care that could so easily have helped them.
The majority of local services are charitable hospices, kept afloat largely through the generosity of the public giving money and time to the tune of about £500 million each year. As yet, there is still no joined-up UK strategy for end-of-life care.
Initially conceived as places where adults could be cared for, hospices have also been founded especially for children. The first of these — Helen House in Oxford — was established by Anglican nuns in 1982. Five years later yet another specialist hospice was created, for teenagers, with dedicated care, at Martin’s House in York; in 1988 the Mildmay Hospital for AIDS sufferers, the first in Europe, was established.
Here in the UK, despite a strong tradition of palliative care supported by doctors, district nurses and others, a forthcoming report from Help the Hospices shows that it is the most marginalised and excluded in our society who are most at risk: the homeless, refugees, people with learning difficulties, mental illness or addictions, those living in institutions, the very frail and elderly — as well as those living in remote areas and from minority ethnic communities. There is also less palliative care available for those suffering from illnesses other than cancer.
Today is the second World Hospice and Palliative Care Day. It’s a day for celebration and for reminding the world, and especially governments, of the desperate need to make hospice and palliative care a bigger priority within health and social care.
The existing barriers are many. Increased and more consistent funding is needed. A greater co-ordination of services is required to make sure that the best possible use is made of the expertise that already exists, so that more people can benefit. There also needs to be an education programme so that those who are most at risk can get all the help they need.
There are those who may avoid seeking help out of fear or hopelessness. Some may think that their cultural or religious needs will not be met. In fact, taking its rightful place alongside medical and social care in the hospice and palliative care movement is spiritual care. When the great events of life come to meet us — birth, illness, tragedy, death — the spiritual element is extremely important. Hospices in the UK, rooted in the communities they serve, have chaplains who provide (or ensure appropriate provision is made) to support patients and families, whatever their faith, or none.
Hospice and palliative care is, therefore, about being a friend for the journey, helping families to choose what they want and need at the time and easing pain and suffering.
But many people are asking about the ultimate “choice”. Is it to choose to end your life, because of extreme suffering and pain due to an incurable illness, as proposed in Lord Joffe’s Assisted Dying Bill (defeated in the House of Lords earlier this year)?
My mother, Ruth, dying of throat cancer, had her quality of life greatly assisted by the palliative care she received at Holy Trinity Hospice in South London. This kind of loving, powerful care gets little recognition from those such as Ludwig Minelli, who runs the Dignitas clinic in Zurich. At the recent Liberal Democrat Party conference, Mr Minelli suggested that voluntary euthanasia should be available not only to the terminally ill but also to those with bipolar disorder and long-term depression.
Such suggestions play on our deepest fears and are not, I believe, the answer. The way forward for our society is to value how much can be done for the seriously ill and the dying. We need to learn to value both one another and ourselves, not for our economic output, our worth to society, but as those created in the image of God and deeply loved, by Him and by others.
John Sentamu, Archbishop of York.