"You matter because you are you, and you matter to the last moment of your life."
British doctor Dame Cicely Saunders, founded the modern hospice movement which gave rise to palliative care. In 1948, as a 20-year-old nurse in London, she fell in love with a Polish patient who was dying of cancer. He left her £500 to start a home or hospital to relieve the physical and emotional suffering of people who were dying. Determined to understand the best ways of controlling pain, Saunders became a doctor, against a backdrop of evolving attitudes to end-of-life care in Britain and America. An active approach was emerging, as people became more aware of the intimate connections between physical and mental states, and sought new, creative ways to care for people until the very end of their lives – and beyond, in the care of the bereaved.
In 1967, Saunders opened St Christopher's Hospice at Sydenham in south-east London, believing passionately that with the right, care, the last days of a person's life could be made dignified and happy. She said: "I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, 'For someone to look as if they are trying to understand me'. It is impossible to understand fully another person, but I never forgot that he did not ask for success but only that someone should care enough to try."
Beating total pain
Saunders built a life-affirming philosophy around the belief that dying is 'as natural as being born', and death should be free from suffering and pain. By listening carefully to patients' stories of illness, disease and suffering, Saunders evolved the concept of 'total pain', which includes not just the physical but also social, emotional and spiritual aspects of suffering. Her approach to pain management was simple: constant pain needs constant control. Analgesics were to be given regularly to prevent pain, rather than alleviate it, and they should be used progressively as needed – from mild through to strong. Each patient's needs were individual and specific, and their care was to be developed accordingly, with support extended to their family and carers. 'You matter because you are you, and you matter to the last moment of your life,' Saunders is famed for saying.
The speciality of palliative medicine was first recognised in the UK in 1987 – a key moment in the wider shift away from 'terminal' care towards the concept of palliative care. Alongside the realisation that the benefits of holistic palliative care should be expanded to those with life-limited diseases other than cancer, the impetus emerged to move palliative care to earlier stages in disease progression, integrating it with curative and rehabilitation. The vision of 'palliative care for all' emerged as both desirable and achievable.
A global movement
The difference palliative care makes to the lives of patients and their families and carers is radical, so it's easy to see why palliative care took off and is now an accepted integral part of health care policies globally. St Christopher's Hospice quickly became an inspiring model for others, differing significantly from earlier homes for people nearing death by taking a three-pronged approach, combining excellent clinical care, education and research. The success of this approach fuelled palliative care development worldwide, firstly in affluent countries, then in poorer ones too, with Zimbabwe's Island Hospice Service (founded in 1979) considered to be the first in a developing country.
Today there are more than 8,000 hospices working around the world, and many more specialist palliative care units in hospitals. But the principles of hospice care are also practised in many different settings, such as home-based and day-care services. There are also many successful mentoring and twinning arrangements between hospices and palliative care services in developing countries and their counterparts in the West.
Pioneers of palliative care have worked tirelessly to promote and develop Saunders's approach. Driven by common goals, they have built collaborative networks on national, regional and international levels, and won committed backing from key bodies such as the World Health Organisation. It's now widely accepted that medical specialisation, the integration of palliative care into mainstream health systems and the development of evidence-based practices are crucial to the ongoing reduction of suffering in people with life-limiting illnesses.
The World Health Organisation in 2012 estimated that over 40 million people needed palliative care and that with proper palliative care, the suffering of these people could be prevented. With people living in vast swathes of the world still unable to access any sort of palliative care, it's vital that the expansion continues.