Profoundly rejecting the fatalistic response of the medical establishment, a new movement placed people at the heart of compassionate care at the end of their lives.
Cicely Saunders in March 2005, four months before she died at St Christopher’s Hospice, where she was already an in-patient. Credit: David Clark. All rights reserved.
One month before the Beatles “All You Need is Love” rocketed to the top of the British pop charts in the summer of 1967, a new institution called St Christopher’s Hospice opened in quieter fashion in the London suburb ofSydenham. It was the first of its kind in the world. The founder of the hospice was a pioneering doctor, nurse and social worker called Cicely Saunders, and her new project was also a work of love—though her musical tastes lay more with Ralph Vaughan Williams than Lennon and McCartney.
Saunders was born in 1918 and she died ten years ago today, July 14, at the age of 87. She is widely acknowledged as the founder of the modern hospice movement and a key catalyst in its wider development around the world. Her contribution was to define a new field of care that focussed on the last stages of life, particularly when associated with progressive diseases such as cancer or neurological conditions. This came to be known as “palliative care,” an extra layer of support for adults, children, families and communities designed to prevent and relieve pain and suffering when death is impending, and in bereavement.
Though motivated by her Christian beliefs, Saunders harnessed the love of people of other faiths—and none—to a neglected cause. This required challenging the orientation of medicine to death at the time with all its taboos and silences. In their place, she opened up a practical, personal, political and philosophical space for engaging with the care of the dying, and with death itself.
Born into a prosperous family, she enjoyed many of the comforts and the lifestyle of the English upper middle classes. Her father was a land agent and the changes that came in the wake of World War One brought opportunities to profit from the sale and restructuring of estates and farms across the United Kingdom. At boarding school from the age of 14 Saunders was often unhappy, but this experience seems to have fostered in her a belief in the underdog—oras she subsequently said “people who felt shut out.”
In her late teens and after some cramming, she gained entry to Oxford University to read Philosophy, Politics and Economics. But when war broke out in 1939 she became increasingly concerned about being sequestered in academic study, so she went to St Thomas’ Hospital in London and trained as a nurse. When the war ended she returned to Oxford to graduate and then enrolled as a hospital ‘almoner’ or medical social worker.
She was now moving in evangelical Christian circles, an orientation from which she retreated in later years even as her faith grew stronger. She once told me that she ‘believed less’ towards the end of her life, but held these remaining beliefs much more deeply. She also turned her back on the prosyletising and restrictions of evangelicalism in favour of a faith that included many perspectives and cultural influences.
In 1947 she met and began caring for David Tasma, a waiter from Poland who had survived the war but was now dying of cancer in the London Hospital. Their conversations were life changing to her, particularly in emphasizing the need for love and understanding for those close to death, and the possibility of developing more suitable environments in which that care could be provided. Paraphrasing the New Testament, Tasma asked Saunders for “what is in your mind and in your heart,” which she interpreted as the challenge of combining intellect with compassion.
After his death she set about learning more about caring for people with terminal malignant disease, and by the mid-1950s she had embarked on a third professional training as a doctor. Fuelled by her nursing and social work experience, she was now entirely focussed on an area which interested few others at the time: improvements in the care of the dying.
Her inspiration came from the handful of religiously-oriented terminal care homes that existed around London at that time. In her final year at medical school she published an article on dying from cancer in the St Thomas’s Hospital Gazette. It was both a manifesto and a call to action. Not only did it describe the clinical challenges of such care, but it also set out a plan for how homes for the dying could be developed.
She went to work at St Joseph’s Hospice in Hackney, a precursor of Saunders’ vision for a new institution that provided a wider range of care and set out to influence the healthcare system through teaching, research and advocacy. Here in London’s East End she honed her clinical skills and approaches.
Saunders combined the warmth and solicitude of the hospice with a new realism about the value of narcotic drugs. Pain must never be allowed to gain the upper hand, she felt. It must be prevented as well as relieved. Regular giving was the key. “Constant pain needs constant control” was her mantra—for example through frequent injections of Diamorphine as well as judicious use of the “Brompton Cocktail,” an exotic mix of gin, morphine, tincture of cannabis, and cocaine. By such means the easeful death described by nineteenth century forbears such as William Munk could be achieved, but with no deliberate intent to bring about the end of life.
She also listened carefully to patients’ stories, learning that their suffering went beyond the physical. When one of them told her that “all of me is wrong,” she coined the term “total pain” to include its social, psychological and spiritual dimensions. This required a team effort, bringing together skills from medicine, chaplaincy, social work, nursing, and lay volunteers.
Such was the model for the modern hospice: a place inspired by faith that provided excellent clinical care but also—unlike its predecessors—education, research, policy advocacy and a beacon of inspiration to others. It was to be an independent charity located outside the British National Health Service and a visceral source of opposition to euthanasia, for which support had been growing in Britain since the 1930s.
The success of St Christopher’s was phenomenal. It became a hot-bed of training for an entire cohort of health professionals who were disillusioned with modern medicine’s approach to the dying—rejecting both the fatalism that abandoned those close to death as well as the futility of inappropriate interventions that did more harm than good. In their place, the hospice sought a middle way that combined sound medicine with compassionate care.
St Christopher’s became a source of knowledge, good practice and information for people worldwide who sought to tackle the pain of terminal cancer and offer support beyond the medical paradigm. They were concerned, as Saunders put it, “both with persons and as persons.” The hospice was widely emulated in Britain, and inspired a different approach in the USA where hospice home care was the prevalent early model, led by a friend and associate of Saunders calledFlorence Wald, the Dean of Nursing at Yale University.
Engaging directly with the full personhood of both carers and the cared-for meant throwing away the technique of professional distancing from patients that was prevalent at the time, and replacing it with a new and more human form of engagement.
This new approach embraced rather than retreated from the intersubjective experience of care at the end of life, recognising that everyone involved is touched in some way. It privileged the otherwise abandoned and stigmatised dying individual by insisting that “you matter because you are you.” Above all, it profoundly rejected the fatalistic response of the medical system when cure is no longer possible and the attitude that ‘there is nothing more that we can do.’
In 1987, twenty years after St Christopher’s opened its doors, the British medical establishment finally recognised the new field of care that Cicely Saunders had defined. It was called “palliative medicine.” The name had been suggested by Canadian surgeon called Balfour Mount who took the St Christopher’s model and rolled it out in a large teaching hospital in Montreal. Physicians long familiar with the palliation of symptoms were now offered a whole new approach to medical care in the face of life-limiting illness, and one that was no longer confined to the final stages of life.
Saunders lived long enough to see the fruits of her labours as the hospice movement spread across the world and palliative medicine became officially recognised in many countries’ health systems. Her legacy continues to reverberate today, but the challenges are different. For many people, cancer has been transformed into a chronic illness. Longevity increases. And the kind of care supplied by the hospice must be offered to whole populations rather than offering “a bit of heaven for the few” as an associate of hers once put it.
Many of us now face the prospect of a long life that may contain bouts of illness, the possibility of dementia, and the onset of frailty and disability. In this context it is less easy to separate living from dying, so what does that mean for the future of palliative and hospice care? To find the answer to that question we must rekindle the compassion, insight and pragmatism that were so tellingly combined in the life of Cicely Saunders.