The Expansive Years of Hospice in the World (1967 – 1985)
The Expansive Years of Hospice in the World (1967 – 1985)
Abstract and Keywords
Cicely Saunders rose steadily though the honours system — from O.B.E., to Dame, to Order of Merit. She mixed with archbishops and aristocrats. Journalists and writers sought her out. This may have given expression to some less-appealing qualities, of vanity and impatience. If she offered complete attentiveness to her patients, she may have been a less-good listener with others. By now she was intimately involved with a third Polish man — an artist whose estranged wife was still alive and living in Poland. Eventually, they created a ‘kibbutz’ with others to enable living together with a veneer of respectability. This chapter explores her complicated life with and eventual marriage to Marian Bohusz-Szyszko. It also takes us into Cicely Saunders’s extensive travels, her influence on the shaping of hospice care as it broadened into the emerging speciality of palliative medicine, and the scientific work that under-pinned it.
I suppose with my background I wasn’t necessarily going to be the easiest person . . . but I was totally concentrated on getting the patients right and I was doing a lot of talking and I was doing a lot of writing and I was doing a lot of travelling1.
The Hospice Movement
From the summer of 1967 to the autumn of 1985, a period of eighteen years, Cicely was the medical director of the hospice she had founded. Even before it was up and running, St Christopher’s was attracting interest from many countries and, especially, as we have seen, from the United States. Although formulated in the specific context of London’s hospitals and homes for the dying as well as Cicely’s cultural world of Anglican belief and practice, her ideas met with support from American liberals, civil rights supporters, and those of different faiths. Many others from various corners of the globe were drawn to her as a source of inspiration. During these years, Cicely connected to and helped form a global community of activists who promoted hospice ideas. They campaigned against the twin undesirables: terminal neglect of the dying on the one hand and the medicalisation of death on the other. They spoke up for disenfranchised patients locked inside bureaucratic systems where personal narratives and experiences were so easily lost as death approached and the medical industrial complex took over. In time, they gained recognition from the health professions and established a body of specialist knowledge that was documented in the literature and supported, if only to a modest extent, by the evidence of research.
It is now clear that during the years leading up to 1967, the Hospice Movement was already in formation2. The opening of St Christopher’s in July of that year should not be seen as the start of the modern hospice initiative, (p.188) but rather as the culmination of a project that made that initiative possible. Although the term ‘Hospice Movement’ had not yet appeared in the lexicon of terminal care in 1967, its foundations were firmly established. From 1958 to 1967, between the ages of forty and fifty, Cicely had undertaken a remarkable personal project. Harnessing her own faith, her private sorrows, her professional skills, and her indomitable energy, she had gathered around her the support of friends and colleagues who, with her, made St Christopher’s Hospice a reality. This marked the high point of one aspect of her vocation, but also the mere beginning of its true purpose. For now the work of the hospice had to be developed in earnest, and its ideas and principles would require testing in practice. The job would involve a huge volume of daily clinical work and numerous organisational duties, as well as ongoing responsibilities and concerns about finance, staffing, and sustainability, that were never far away. There was also the unfolding process of change taking place in the wider environment itself which had an impact on local services — the creation of the Department of Health and Social Security in 1968 by the Labour government, the restructuring of health authorities introduced by the Conservatives in 1973 and 1982, and the gradual drift towards an internal market for health care. During these years as medical director, Cicely experienced six changes of government and observed the efforts of four different prime ministers, culminating with the start of Margaret Thatcher’s extended period in 10 Downing Street, that began in 1983.
St Christopher’s Gets Going
We have seen how the formation of St Christopher’s took place over nearly a decade. Its opening was also a process rather than an event. During the later period, the hospice had to be commissioned. It needed fixtures and fittings, equipment, furniture, and all the accoutrements required in a modern, metropolitan, purpose-built facility. It also required formal statements about governance, management, clinical practices and procedures, admission and discharge policies, principles for staff support, training and ongoing education, as well as a vision for the research that would be conducted there. Cicely thrived on this. She was a detail terrier for whom no issue was too small. In the autumn of 1966, she was involved in a lengthy discussion and correspondence with Council member the Reverend A.E. Barton — about the altar rail in the hospice chapel. He took the view that there should not be one. She wondered how, with her stiff knees, she would be able to get up again after taking communion. She thought that residents of the hospice Draper’s Wing, planned for the long-term care of elderly residents, might have the same problem. Eventually they compromised on a moveable bench which could be placed in front of the communicants3. With the Bishop of Stepney she had exchanges about the form of the daily prayers. Both she and Helen Willans, of the Church (p.189) Army, who was to be in charge of Draper’s, thought the book of the Church of South India might be an interesting innovation. She was also keen to introduce daily communion in the chapel and ward prayers, following the tradition of St Thomas’s, which are taken by the Sister or nurse in charge, both morning and evening4. In this context it might seem surprising that she seemed to pay so little attention to the physical aspects of David Tasma’s ‘window’, although she referred to it constantly within her creation of the founding narrative of the hospice. It had no special decorative features, being just one panel in the modern glazing at the entrance to the hospice. The plaque which marked it was mundane in the extreme and in a style favoured by high-street engravers of nameplates and sports trophies. As a memorial to the ‘founding patient’, it seemed under-whelming in the extreme. Nevertheless, as Cicely became fond of saying, she had ‘built the hospice round the window’ and would often be photographed there in years to come, even if visitors found the iconic spot somewhat mundane.
Appointing staff to work in the hospice was the single most important aspect of the commissioning process. Here, Cicely’s methods were individual and unorthodox, even by the standards of the time, though it seemed no one called ‘foul!’ or cried ‘nepotism!’ Eschewing advertisements, selection processes, and appointment panels, her favoured approach was to select personally people she thought would fit the bill. These could be long-standing friends as well as those whom she had got to know in the context of her own clinical work. They included a friend of a god-daughter, or people who identified themselves to her through her lectures, teaching, and public speaking. Cicely had done lots of talks in local churches and these led to a stream of volunteers offering their services. The organiser of volunteers, who was the first ever to work in a hospice, was a friend of Colin Murray Parkes and came onboard before opening. The first Night Sister was asked to come after hearing a talk at the Royal College of Nursing. More notably, the first matron, Verena Weist, had been Ward Sister to Mrs G. and, as early as the spring of 1964, Cicely was writing to Sir George Godber, Chief Medical Officer, at the Ministry of Health, about her suitability, based on twelve years of experience at the Waterloo Hospital and then time as assistant matron at the Lambeth Hospital5. Thinking she might have a research role as well, Cicely unlocked funds from the World Health Organization (W.H.O.) to enable Miss Weist to travel with her to the United States in the summer of 1965, visiting a number of hospitals and research centres. She ‘was the sort of matron who would go round and make a bed and get a patient comfortable and speak with the nurse, and knew if she needed a bit of help or something’6. Not only did she land the top nursing job at the hospice, she actually went on to marry Mrs G.’s widowed husband, Jack Galton, whom Cicely had in fact (p.190) appointed as chief steward. The whole hospice attended the wedding, but the match created problems, as the matron protected her husband and he became sensitive about his status: ‘[Q]uite a tricky situation even for those egalitarian days’7. Then there was Helen Willans, whom Cicely had met when she made a donation to St Christopher’s in memory of a friend. She was shown round the unfinished building by Cicely, promptly opted to work in the Draper’s Wing, and then personally visited and selected all the residents, ‘quietly working all the hours’8. She went on to be matron from 1971 to 1983, after the sudden death of Helen Galton from cancer. Mrs Cherubim, Cicely’s cleaner at Connaught Square, was also taken onto the staff. Likewise, there was the G.P. Mary Baines, who had lost touch with Cicely after medical school, but then heard her giving a radio appeal for St Christopher’s in 1964. When she and her husband moved to Sydenham the next year, she was quickly offered a job at the hospice and soon took on a key clinical role beginning in April 1968. That same year, Cicely’s old friend from Connaught Square, Gillian Ford, began what became a twenty-year stint of providing medical cover one weekend in four. A few years later, Tom West, one of Cicely’s closest friends and with whom she already had a complex personal relationship, was taken on as her medical deputy. In 1966, as she made some of these plans, she wrote to Colin Murray Parkes, expressing her ideas for a ‘non-hierarchical staff structure’ (it wasn’t to be) and her enthusiasm for appointing friends, patient’s relatives, and others, all of whom she considered to ‘fit entirely naturally into the St Christopher’s group’9. Looking back, Cicely felt her methods worked well enough: ‘[O]n the whole, with no appointments committee or anything like that, I don’t think we made any more mistakes than are made now, with all the hassle that goes on about appointments’10. Her overall approach was captured in the maxim ‘Employ the unlikely but not the unstable’11.
The First Patients to Arrive
The first patient to be admitted to St Christopher’s was to be for ‘long stay’. It had been agreed that ten per cent of patients (excluding the residents of the Draper’s Wing) would be in this category. This was the kind of person particularly dear to Cicely’s heart and familiar to her from St Joseph’s. Mrs Medway had syringa myelia, a chronic condition that compresses or destroys the surrounding nerve tissue of the spinal cord. She had lived all her life in Bermondsey, but after the death of her husband had moved to be with a cousin in Southend. Things were not going well there and when Cicely bumped into Mrs Medhurst’s former district nurse from London after one of her lectures, they discussed the possibility of admission to St Christopher’s. The Hospital Board agreed to the arrangement on the grounds that Mrs Medhurst had been a London resident: ‘. . . so she arrived in a car with two nieces and her lovely mattress with a hole in it so she could spend a penny through it at night, her (p.191) favourite chair, and her favourite picture of Christ I Am the Light of the World, and there she was’12. In Cicely’s view, ‘God sent us Mrs Medhurst. She was the first to be admitted and she was with us for eighteen months and she would have made anywhere in the world home, and she did as much as anybody to make the place a community’13. Cicely never again saw a patient with this condition at St Christopher’s.
Three terminally ill cancer patients were admitted on the same day as Mrs Medhurst. Alexandra Ward was opened first to accommodate them and they were pictured with Princess Alexandra at the official opening on 24 July 1967. On that day, the other two wards and the reception area were packed full of well-wishers, supporters, and secretaries from relevant grant-giving trusts. The princess unveiled a sculpture of St Christopher, crossing the stream with the Christ-child across his back (Figure 5.1). The work had been commissioned from Witold Kawalec, whose alabaster figure of the kneeling woman had been acquired in 1964 by Cicely to go in the entrance to the hospice and to be in memory of her Aunt Daisy, who died in that year14. A Polish exile who had served in the Royal Air Force in the Second World War before studying sculpture at Nottingham College of Art, Kawalec had met Cicely through the Drian (p.192) Gallery connection. His sculpture of St Christopher came to be his best-known work. The saint was a paradoxical symbol — yes, the patron saint of travellers, who might be journeying through illness and beyond, but also associated in other beliefs as the saint whose name must be heard each day if death is to be avoided, thus accounting for his popularity15.
With the opening complete, everything lay before them.
And we then just got down to the work, and of course I was really the only person in the house who’d ever done whole-time hospice care, and so it was a continual learning curve for everybody. And we had a lot of big staff meetings talking about how do we do breakfast and basic things like that. Chapel had been dedicated in June and so we started out with having services there. We gathered in a lovely Irish cook who really made us really welcome in the dining room and gave us really very good food. And we started out with volunteers, and they were a very interesting group, and worked very hard . . . chief steward gathered in one or two stewards; a very nice local woman came as the most perfect receptionist, like a lovely blonde barmaid, she was a wonderful receptionist; Peggy and her husband, who was a police inspector, used to come in and out. You know, we just gathered it up. It sounded terribly haphazard and indeed it was16.
By October, Alexandra Ward was full and they were feeling stretched as they opened up City Ward as well. Each ward had eighteen beds and they were aiming to have at least one nurse per bed. Draper’s Wing had sixteen people living there. By March 1968, Nuffield Ward was also open. It was a gigantic effort from a standing start.
St Joseph’s — Ongoing Links
If all this was not enough, the links with St Joseph’s were also re-kindled. After Mother Dolores moved on from Hackney, she was followed by Sister Claude de la Colombiere, described by Cicely as ‘a nun large enough to fit that name’17. Cicely was invited back and began a Saturday afternoon session in her former stamping ground. True to form, she managed to bring someone else in to help. Richard Carter was a pathologist at the Royal Marsden Hospital and had offered his services as a volunteer at St Christopher’s, but Cicely persuaded him to come to St Joseph’s with her. So each Saturday afternoon, he admitted patients, she did a ward round, and afterwards they met up for tea. Together with Sister Mary Antonia, whom he came to adore, they had ‘a hilarious time’ together, full of laughter18. It was a re-engagement and also a symbol of moving forward. Cicely could go back with a new assurance to the place where she had learned so much. She had also moved on in some ways since the death of Antoni and now had Marian in her life, if only on elastic.
(p.193) By the end of 1970, a new houseman, Richard Lamerton, was installed at St Joseph’s. He had first visited the hospice as a Bart’s medical student and attended one of Cicely’s ward rounds. On qualification he asked Cicely if he could come to train at St Christopher’s. She considered it no place for a trainee at that time, but soon she was worrying about medical cover and praying for more help. He called again and she took him on, in answer to her prayer. The chirpy Yorkshireman did a year of training at St Christopher’s before moving to Hackney on Cicely’s recommendation. She came to regard him as something of a maverick. On one occasion she told him: ‘I don’t know who we were praying for, but it wasn’t you!’19 Nevertheless, she had confidence in Lamerton, and when she was too busy to accept an invitation to write a book on the care of the dying, she handed it to him and kept a close interest in his efforts thereafter, writing the foreword to the first edition20. She ensured he was properly supervised at St Joseph’s, and she organised for the more experienced Dr Ron Welldon at St Christopher’s to do a ward round with Lamerton twice a week. Subsequently, Dr Robert Twycross took on a similar role at St Joseph’s. After a period from 1965 to 1967, when medical work at St Joseph’s had ‘fallen back’, now with help from its much younger sibling it was again on a positive trajectory. It was typical of Cicely that, in the midst of her many new responsibilities at Sydenham, she was not prepared to see Hackney lose out.
It was all ‘frightfully hard work’21. She was on duty in the hospice every second weekend and would often have some kind of speaking engagement on her weekend ‘off’. She was the only full-time doctor, along with Albertine Winner in a very part-time role and Colin Murray Parkes doing one day a week and Ron Welldon mainly deployed on research work. In March 1968, more part-time help came when Mary Baines joined the medical team. There were three wards to look after, four beginning in 1975. Despite the workload, Cicely had to learn to give up some responsibilities and to let go. During the planning years she had been everything to St Christopher’s; now she had to devolve duties to the matron and the bursar. It was soon obvious they were short of staff in those early days. On one occasion a nurse came out of Alexandra Ward and told her: ‘Dr Saunders if you don’t have more nurses, you won’t have any nurses’22.
Despite this, there was a sense of commitment amongst the staff that was palpable. It seemed to be made more so by the fact that those coming to work at St Christopher’s from the National Health Service were somehow burning their boats. Investing their careers in a small charitable endeavour, would they ever get back into the mainstream system? It didn’t seem to matter. There were patients to be looked after and a constant ebb and flow of new arrivals, deaths, losses, and separations. Cicely began to feel that St Christopher’s, at this point, (p.194) could not do without her. She became less eager to accept some invitations which involved extended periods of absence. It was partly about a reluctance to be away, but it was also the avoidance of returning to find some problem or difficulty which had arisen in the interim and needed her attention. So in June 1969, on getting back from Yale, she had to write to her friend Esther Lucille Brown in San Francisco, explaining she would have to put off the trip planned for that autumn:
I have come back to the Hospice to find that, although it has managed well enough in my time away, it is not yet really established sufficiently to be happy with my absence for more than two or three weeks at a time. This probably sounds as if I have not managed to establish a viable institution, but you must remember that we are not quite two years old. I know that other people can do pretty well everything, but a child of two years old does rather need its mother to feel sufficiently secure23.
The reception desk staff called her ‘mum’. Draper’s Wing had continuity and the familial atmosphere she had found at St Joseph’s. Just as in Hackney, Cicely became devoted to special patients there who buoyed her up in times of difficulty. Some of the staff encouraged other members of their own families to work at the hospice. It became common to talk about the whole of St Christopher’s as a family. The long-stay residents volunteered in the hospice and had meals in the dining room. By the early summer of 1968, St Christopher’s was making nursery provision available for children of the staff. The childless woman now had offspring.
But unlike a family, St Christopher’s was also a community of interest and of purpose. Cicely knew this needed to be nurtured and curated. She brought in stimulating speakers to explore challenging questions. She used the ungainly term ‘community of the unalike’ to capture the diverse tissue of belief and orientation which was held together by something in common. They were also supported by the hospice ‘visitor’; first and before opening, this was Evered Lunt, who had been Bishop of Stepney since 1957. As we have seen, Cicely had first met him at St Joseph’s in 1960 and visited him at home to discuss her ideas. Recovering from an appendix operation at the time, he greeted her in cassock over pyjamas, something which endeared him to her. When the St Christopher’s group first gathered together two years later, he was the one she wanted everyone to meet. He was generous with his time at their regular planning days spent together. If Cicely majored on practical matters, he would follow on with more spiritual concerns. He gave wise counsel on the type of community the hospice should become. He was hugely appreciated for his role at the various dedications and ceremonies that took place as the site was acquired and building progressed. Cicely quizzed him on the forms of prayers, worship, and ritual that should be adopted by the hospice, and he took a keen interest in individual patients as they began to arrive. He, along with others (p.195) like the Orthodox priest Metropolitan Anthony and Sidney Evans from King’s College London, contributed to a series of talks for the hospice staff in the early days — on the nature of persons. He continued to be involved with the hospice after his retirement in 1968. Although the hospice had no official chaplain at first, through Lunt’s manner of influence, it was nevertheless a place of religious and spiritual reflection from the start. Nor was this bounded by Cicely’s own denominational parameters. There were agnostics, even atheists amongst them, as well as those of other faiths such as Albertine Winner, who was Jewish. For Cicely, ‘the idea that there’s only one way . . . sort of fell off gradually I suppose’24.
Several key people stand out for their role at St Christopher’s in the early years. Some had long-standing positions at the hospice; others made temporary visits but produced a big impact. One such was Sister Zita Marie Cotter, a Sister of Charity working as a nurse and administrator at St Vincent’s Hospital, New York, where Cicely had first met her in 1963. They subsequently stayed in touch through the formative years of St Christopher’s, maintaining a regular correspondence and meeting up in the United States, even when Sister Zita Marie moved to Kansas and New Mexico. By late 1966, they were planning for Sister Zita Marie to make an extended visit from about the time the hospice opened. Cicely was delighted with the six months they had together. She found in Zita Marie someone who made a contribution to the ‘foundation stones’ of daily life and prayer in the hospice. Zita Marie worked directly with patients, encouraged the staff, and was a skilled facilitator. When she left, Cicely wrote: ‘[W]e feel at the moment rather as if a light has gone out’25. She was the first of many to come from the United States and elsewhere, brought in by Cicely’s open-handed invitations, given practical tasks to do, and encouraged to help shape the life and work of the hospice through their individual ideas and skills. No sooner had she left, than Florence Wald herself was arriving for a stint and being warned by Cicely: ‘How I am looking forward to it, but I hope you have a good holiday first because we are quite hard work!’26 In fact it was a very significant time for Wald. She was in the process of making the decision to give up the role of nursing dean at Yale and devote her energies full time to hospice work. She arrived at Sydenham with her husband Henry and their children and stayed for four weeks, working on the three wards and conducting surveys of the various departments. When she returned to the United States in October, she joined with her colleagues Morris Wessel, Ray Duff, and Ed Dobihall to formulate a plan for the New Haven Hospice. Clearly, the influence of St Christopher’s was spreading27.
Barbara McNulty had trained as a nurse at St Thomas’s and then became a district nurse in the rural Cotswolds, working for a religious community. She (p.196) had been part of the original St Christopher’s group and, when matron and Cicely asked her to join them at St Christopher’s, she took the decision to drop everything in Gloucestershire and move to Sydenham. She was the first Sister in charge of Alexandra Ward. It was a role she had never taken on before, but Cicely was confident in her. Certainly a person who had the measure of Cicely and her approach — she recognised the modus operandi — and the attention to detail which could be over-bearing, but she also saw how it was coupled with a bigger vision in Cicely, that was often rationalised as the workings of the Holy Spirit28. One such example came out of a conversation between them about a female patient with severe pain from bone metastases who had made the choice to go home. Due to fear that the patient might become addicted to her medication (a moderate dose of diamorphine, or heroin), the G.P. had reduced and then stopped the dose on which she had been established. The pain returned, the situation worsened, and within ten days the patient was re-admitted, never to leave the hospice again29. Reflecting on the case, Cicely was galvanised into doing something.
Although a district nurse, McNulty had never considered that St Christopher’s could reach beyond its inpatient wards. Cicely, by contrast, already had such an idea in formation, though she in turn had never worked in the community. Their discussion led to the genesis of the domiciliary care service, that began in October 1969. McNulty and Mary Baines (as an experienced G.P.) were the obvious people to take it forward. Now the hospice, already discharging patients home in some numbers, could reach out to the wider community of need, to patients and families at home, to the local G.P.s, and to the district nurses. McNulty took on the challenge with skill and energy. She began by making personal contact with literally hundreds of local family doctors, explaining what the hospice was about and what it could offer. The district nurses also had to be won over and convinced they were not ‘losing’ their patients. This was made clear by emphasising the ‘advisory’ nature of the service; it did not provide direct nursing or medical care and was not a substitute for existing services. At first, McNulty was largely a one-woman show. She had to make herself available twenty-four hours per day. Baines added more capacity, as well as the necessary medical knowledge. Another nurse from the wards was then drafted in. Baines ran an outpatient clinic in the hospice and members of the team made home visits when they were requested. They took on patients from within the locality, but also from farther afield — Brighton, Gravesend, and Guildford.
As the team expanded, its members spent more and more time outside the hospice. They saw how quickly things could change for patients at home as their symptoms suddenly worsened or as the strength of a family carer ebbed (p.197) away. They had expertise to bring into the home, but they also had the back-up of admission to the hospice, should it be needed. They could likewise conjure up all manner of other resources. One day, Cicely was having lunch in the dining room with the Rev David Sheppard, the Bishop of Woolwich since 1968, a Left-leaning clergyman and well known as a former England cricket captain. Barbara McNulty rushed in, enquiring if Cicely knew a faith healer, as a patient on the domiciliary service had asked to see one. Sheppard immediately proffered a number to call, that she followed up soon afterwards. To her astonishment, it took her straight through to Buckingham Palace, where a chaplain there, with faith-healing interests, was able to help and subsequently went out to see the patient at home30. During the early 1970s, McNulty was travelling to the United States with Cicely and, in close discussion with Florence Wald and her associates, helping to shape the strategy of the New Haven Hospice. By 1973, New Haven was up and running and Sylvia Lack, one of Cicely’s early registrars, was working there, in an approach that favoured domiciliary services over the inpatient care model. As we shall see, however, it was not until 1980 that Colin Murray Parkes published the results of an evaluation of the St Christopher’s domiciliary service, supported by monies from the King Edward’s Fund.
In a paper presented in 1970, Cicely gave a wide-ranging overview of the work of St Christopher’s and, with it, a sense of the responsibility the hospice organisation had quickly become31. Despite a continuing reliance on charitable grants and gifts, the National Health Service now contributed two thirds of the running costs; indeed, the research programme together with the experimental outpatient and domiciliary service were, at that time, wholly supported by National Health Service funding. A teaching unit was also under construction. By this time, some four hundred patients died at the hospice each year, and between forty and sixty patients were discharged home, at least for a short time.
Soon a majority of patients had their first encounter with the hospice’s services in their own homes. A couple of years later, Cicely and Albertine Winner provided more data on the levels of service being provided32. The outpatient arrangements at St Christopher’s allowed G.P.s to refer patients for pain control, along with an opportunity for them to become familiar with the hospice prior to admission. There were 504 outpatients in 1969 to 1970 and 673 in 1970 to 1971. In addition, home-care service visits were up from sixteen in 1969 to seventy-nine in 1971. St Christopher’s had doubled the number of people in its care at any one time simply by the establishment of its outpatient service.
Another component of the vision which Cicely had long anticipated was the provision of a formal programme of education at St Christopher’s. This would (p.198) be one of the things which marked it out from the other hospices which had preceded it. She saw how skills and knowledge could be advanced through practise. Her ambitions for research would steadily bear fruit in the first decade after opening. In addition, education and teaching were also essential to consolidate new approaches and, most important of all, disseminate and build capacity beyond the staff group of St Christopher’s itself. By 1969, there were twelve medical students, twenty nursing students, and eleven others spending time at the hospice. They were each allocated to a ward and mainly given practical duties. It was clear they needed a more structured educational experience.
Given the stresses of raising funds to build the hospice, it had been an inspired move to purchase the plot at 57 Lawrie Park Road in 1964. From the outset it was earmarked for a Study Centre, that would be pushed forward when funds could be obtained. These eventually came from two foundations — Wates and Wolfson. The leadership of the centre was patchy during the early days. Cicely acknowledged this new line of development did not always rub along easily with the growing clinical commitments of the hospice. Initially, there was a nurse tutor, Miss Neville, who got the Centre up and running and organised the first conference before moving away in slightly unhappy circumstances to another post at St Thomas’s. At that point there were fears the Centre might become a white elephant, an extravagance which would not pull its weight. Cicely moved quickly to address the situation. Two nurses, Dorothy Summers and ‘Squirrel’ Young, had been coming to the hospice from the outset as weekend volunteers and brought a vast amount of practical knowledge as well as a huge reputation for hard work. One Saturday morning, to Summers’s enormous surprise, she was summoned to Cicely’s office and asked if she would leave her existing job as a nurse tutor at London’s Mayday Hospital and take over the Study Centre. A more formal interview soon followed. Shocked and delighted in turn, Summers accepted immediately33.
The Centre got going in 1973 and Princess Alexandra was again there for its official opening the following year. For ten years Dorothy Summers was its co-ordinator (she eschewed the title of director). Quite quickly, Miss Young was also added to the staff complement as another nurse tutor, and Peggy Miller took up duties as a clinical teacher. Summers realized early that if people were to come in from outside for education and training, then it was important the St Christopher’s staff members themselves should not be neglected in the process. She introduced a more formal induction for new colleagues, followed up with quarterly study days. Initially a nervous teacher, Mary Baines soon became a very popular contributor to these sessions. Weekly sessions led by Miller were introduced for nursing auxiliaries. A course for volunteers followed next and was widely appreciated, with Cicely herself a key speaker. A regular slot was set up for international visitors. More formal nurse programmes were introduced, such as the Joint Board of Clinical Nursing Studies course on ‘Care of the Dying Patient and Family’. Both external students and existing hospice (p.199) staff benefitted from this. A therapeutics course became an annual event. Tom West introduced an intensive five-day course for G.P.s. Contributions were made to the post-ordination training of Anglican ordinands. Gradually, they moved towards multi-disciplinary education. The hospice became a key centre for education and training at a time when there were few places where it could be found. There was growth and activity, but perhaps an absence of strategy. ‘Co-ordination’ needed to give way to leadership, and Cicely became increasingly convinced it should come from medicine.
The change got underway in 1980, when American psychiatrist and gay rights activist Dr John E. Fryer spent a year at St Christopher’s. He was well known in the United States as the person who, in 1972, had challenged the American Psychiatric Association over its classification of homosexuality as a mental illness. A large, outspoken figure, Cicely had first met him through the International Work Group on Death, Dying and Bereavement, that he had helped to found. Initially, she did not warm to him, but he was persistent in his requests to come and spend time at the hospice and review its educational programmes. At first she told Fryer that St Christopher’s wasn’t ready for him. He was an ‘enfant terrible’ who would only be allowed to come when she expressly invited him to do so34. He first visited in 1978, carefully watched over by the hospice founder, who the following year asked him to make a more extended stay. Her eventual confidence in him says much about Cicely’s open-ness to new influences and approaches during the 1970s, particularly those inspired through her American networks. Later (and despite her deliberations at the time), she may have considered the invitation to Fryer a ‘rash act’, but she also acknowledged he did a lot of imaginative things and ‘got us thinking a bit more’35.
He was there from August 1980 to June 1981, took part in senior staff meetings, and also had patients referred to him by Colin Murray Parkes. When he returned to London from his Christmas vacation in Philadelphia, he sensed the turmoil which was erupting around him. He was making Dorothy Summers unhappy; senior colleagues were worried about his influence. There was discontent and rumblings. He quickly defended himself, declared that Cicely had mandated him to make changes and to strengthen the role of medical education. He stayed on as planned and some accommodation was found between the conflicting viewpoints. Cicely’s colleagues may well have been ruffled by the preferential treatment he was given — paid salary, an apartment with colour television, and extended conversations in her office over glasses of malt whisky. In turn, they had to endure his outbursts, his use of strong language, and his encouragement to staff to let out their emotions when the stresses of hospice work became too much for them. Yet his restructuring went ahead and even led to some more mundane developments, such as the first conference for hospice administrators. Crucially, he also identified Dr Kerry Bluglass to take over from him as director of the Study Centre when he returned to the United (p.200) States, with Dorothy Summers staying on as co-ordinator until her retirement in 1984. Also a psychiatrist and with links at Birmingham University, Bluglass was director of studies until 1985. She was then succeeded by Gillian Ford, who came on secondment from her post as Deputy Chief Medical Officer at the Department of Health, just as Cicely stood down as medical director. By then, the medical leadership of the Study Centre had reached its zenith.
Relationships in the Hospice
As the 1970s advanced, there was a continuing need to attract appropriate staff, and in this, Cicely’s methods remained direct and pragmatic. We have seen that her long-standing friendship with Tom West, begun at medical school, had survived physical separation and the experience with Antoni. When Cicely heard he was resigning from the mission field and from his work in Nigeria, she quickly wrote, offering him a job as her deputy at the hospice36. He was delighted and flattered. Why she felt she wanted to do this is not clear. Cicely and West had corresponded intensely during his time in Nigeria. In the interim, he had been back periodically. He had attended the laying of the foundation stone, and both Cicely and his mother kept him informed of developments at Sydenham. But, he couldn’t come back permanently for two years. It seemed a long time. Cicely told him she would wait. Then, in 1972, on an impulse she sold a rug she had inherited from her father and bought an airline ticket to Nigeria. He returned to Britain six months later and started at St Christopher’s in 1973. He wasn’t in with the bricks, but nor was he part of the ‘second wave’ of appointments. His new role concerned his mother. She worried her son was too caught up with Cicely, who might in turn scupper Tom’s prospects of marriage. By Cicely’s account, he remained very fond of her in what was always a platonic relationship: ‘I knew that we couldn’t ever really say what we felt because that would break what we had, and what we had was safe as long as we didn’t get on to a really deep level’37. It was a precarious and risky platform on which to build a day-to-day (and hierarchical) professional relationship, not least in the charged emotional atmosphere the hospice could sometimes generate. Inevitably, there would be repercussions. Whilst West found the practice of hospice medicine to be relatively straightforward, he was expected to do a degree of organisation and management of the hospice which came less easily38, and Cicely was constantly looking over his shoulder.
It was an awareness of the tensions that could arise between people in the hospice environment that saw Cicely leaning on Evered Lunt for guidance and succour in the early years. Then a new line of support suddenly opened up. Belgian-born, American psychiatrist and former Jewish seminarian Dr Sam Klagsbrun had first heard Cicely speak on her visit to Yale in 1963. It would be several years until they met again. On this occasion, she was attending a talk he was giving to a conference of Protestant Chaplains in the United States. He (p.201) was speaking about Job, under the title ‘The Man I Hate Most in the Bible’. His purpose was to explore how people of faith respond to anger, often rather ineffectually. He received a tepid response to his talk, except from Cicely. At the end of his address, stooping low and apparently ‘ready to pounce’, she walked to the podium. Klagsbrun knew who she was. In what he recalled as an impressive and aristocratic tone, she said to him: ‘That was the most outrageous presentation I’ve ever heard’. He apologised if he had offended anyone and explained that his intention had simply been to stir up the audience. Her reply surprised him: ‘No, no, no. You mis-understand me. It wasn’t offensive; it was really provocative and challenging, which I understand is what you deliberately tried to do’. She went on: ‘[Y]ou know, we British are very stuffy, and at St Christopher’s we’re terribly filled with ourselves and I’m beginning to worry about that. We need someone like you to come over there and stir us up the way you’ve upset this whole audience’. He accepted immediately and set in train a series of annual visits that went on thereafter for thirty-five years, at first engaging in some clinical rounds, running sessions with staff, and talking with senior management, but increasingly working in the role of what he saw as ‘management consultant’, or in the St Christopher’s terminology ‘visitor’, which was his official title beginning in 1985, when he took over the role from Philip Edwards, who had previously been the hospice chaplain. The appointment of Klagsbrun broke several moulds — Jewish, American, a clinician — yet he quickly became a part of the culture of St Christopher’s, to the extent that staff would hold on to tricky issues, tensions, and conflicts to discuss with him on what became increasingly enervating and exhausting visits for him each year39. Klagsbrun’s involvement from this stage onwards was very important. Only seen for a matter of days each year, he was nevertheless well known to the staff. He also gained special access to the thoughts, feelings, relationships, and tensions that existed within the senior team. If he self-confessedly adored Cicely, he could nevertheless see her strengths and weaknesses, and was candid in reflecting them back. He also maintained a rich correspondence with her between visits, covering not only updates and practical matters at St Christopher’s, but also literary, religious, and philosophical ideas which they shared and which served to enrich Cicely’s thinking and her work in the hospice and beyond over many years.
Friends, Family, and Marriage
Cicely had good friends from her evangelical days who stayed with her in the years that followed. Notable among them were Rosetta Burch and Madge Drake. Rosetta and her husband Martin moved to Norwich in 1976, where, following a career in business, he was appointed lay chaplain to the bishop. He died in 1978, but Rosetta continued to live in East Anglia, where Cicely would visit her with Marian. Rosetta was an underlying source of good advice (p.202) about St Christopher’s at some crucial moments. Madge too was an ‘awfully good listener’40; Cicely and she spent long hours in conversation in Madge’s caravan in the New Forest, where they had bird-watching holidays. Gillian Ford remained close to her as a friend from their flat-sharing days during the late 1950s, as a holiday companion, and as a colleague who would first volunteer and then be on the staff at St Christopher’s. From her early visits to America in 1963, Cicely also forged several deep friendships with people who remained close to her until death intervened. Among these, and in addition to Florence Wald, there was Grace Goldin, Carleton Sweetser, Sister Zita Marie, and Marty Herrman. With each of these she maintained not only regular contact through visits whilst on work-related trips, but also shared holidays and, in particular, regular and sustained correspondence. Cicely’s correspondence with Grace Goldin is voluminous and worthy of study in its own right. They first met on Cicely’s visit to Yale in 1966, when Goldin was working with a public health colleague on a book about the history of hospitals41. Goldin, who lived in Swarthmore, Pennsylvania, was interested in the wider history of medicine and also wrote an entry on ‘British hospices’ for Encyclopaedia Britannica in 1980, and the following year published a substantial piece on St Luke’s, Bayswater, and the growth of early homes for the dying during the nineteenth century, that she termed ‘proto-hospices’42. She was also an accomplished poet and photographer and took many pictures of Cicely, Marian, and life at St Christopher’s as well as produced a picture history of hospitals which included some striking images of hospices, patients, and staff43. Despite the distance that separated them across the Atlantic Ocean, Goldin was, as we shall see, a person in whom Cicely confided, shared important news, and detailed the day-to-day challenges of life with Marian. In turn, Cicely encouraged Goldin in her own work, commenting on drafts and read her poems with a keen and supportive interest.
The spring of 1968 saw Cicely’s mother suddenly fall ill. Still living in Highgate at age seventy-seven, she had a mild sub-arachnoid haemorrhage and Cicely arranged for her to be admitted to St Thomas’s for treatment. She then went to St Christopher’s to convalesce. Meanwhile, Cicely postponed a planned holiday to Edinburgh with Marian to visit some of his Polish friends. Chrissie settled well. Safely ensconced in a single room, and in the words of the Ward Sister ‘throwing her weight about in the nicest possible way,’ she seemed on the road to recovery and, as Cicely put it, ‘she was behaving beautifully and I was getting on beautifully with her’44. Thus reassured, Cicely and Marian left for Scotland. As they were driving north in the afternoon, Miss Packer from the Draper’s Wing, who knew Chrissie well, went in to visit and found Chrissie writing a letter to Lilian. Suddenly, as the two of them chatted (p.203) Chrissie cried, ‘Oh my head!’ — and collapsed unconscious. It was a major haemorrhage. The consultant from St Thomas’s was called; Albertine Winner slept in the hospice overnight to keep an eye on things, but the outlook was poor. On reaching Edinburgh after the long drive, Cicely was allowed time to settle with a glass of her favourite Scotch before she was given the news that had been telephoned through from the hospice.
When Cicely called St Christopher’s at eight o’ clock the next morning, 16 May 1968, she was told her mother had died at around 2 am. Cicely was three hundred miles away, so her brother Christopher set about making the necessary arrangements. She stayed another twenty-four hours in Edinburgh to recover from the journey, then returned to Sydenham. Up to a month before, Chrissie had been well and driving her car. In Cicely’s view, her mother had never been happier in her life than in those last years. How ironic then that, thus reconciled, Chrissie should die in the hospice Cicely had created, whilst her daughter, the medical director, was far away in Scotland, about to begin a spring holiday.
Chrissie’s funeral and cremation took place on 21 May 1968 at Beckenham Crematorium, and a service was held for her on the same day at St. Christopher’s. In the subsequent weeks, Cicely received many letters of condolence, that rather softened the picture of Chrissie as a shallow, friendless, and difficult person. Some were from friends who had found in her significant wisdom when reflecting on the challenges of life. Others were from clubs and charities grateful for her involvement, deep interest, and support. Three masses for her soul were said at Buckfast Abbey, arranged by the Reverend Mother at Holy Trinity Convent in Bromley, Kent. After some prodding of her brother John by Cicely, a headstone was installed for her at Eton Parish Churchyard, adjacent to Gordon’s memorial. In Rubislaw granite, it was inscribed: In Him is our Peace. Chrissie’s estate had a value of £38,220 net of charges. It included four properties. In this context, Cicely, John, and Christopher did not overlook Lilian. She was provided by them with an annuity and also a house at 147 Cranley Gardens, in north London. Another curious administrative duty that Cicely undertook after her mother’s death was to return three cheques to the Burgersdorp Branch of the Standard Bank in South Africa; they had been made out in favour of Fred Knight in 1919 and somehow had remained in Chrissie’s possession. It was the end of an era. As Cicely put it, after that ‘I never worried about my parents again’45.
Over the subsequent years, the three Saunders siblings maintained good contact and Cicely took a keen interest in her brothers’ six children, being happy to use her position to lobby for them when she could. In January 1978, she asked her friend and colleague Balfour Mount in Montreal if he knew of anyone looking for an au pair who might take on the middle child of her brother, describing her as a ‘bright girl who has done extremely well with riding in Pony Club trials and is gaining confidence all the time’, but who ‘needs (p.204) something extra to give her a boost as her older brother and younger sister are bouncing, cheerful extroverts who find life considerably easier than she does’. There were family gatherings of the Saunders and anniversaries spent together. Cicely also maintained diligent contact with her various godchildren like Rosetta Burch’s daughter, Rosemary, who much later was to care for her at St Thomas’s when she developed breast cancer.
Since 1963, Cicely’s relationship with the artist Marian Bohusz-Szyszko had been developing, slowly and intermittently. She had fallen in love with his paintings and then with him. She became his patron, and his work was prominently displayed in the hospice from the outset. He had professed his love for her, but declared himself not free to marry. His long-estranged wife in Poland was still alive, he continued to support her financially, and his Catholic faith precluded any divorce. It seemed an arrangement that suited him. He also had a son, Andrei, living in Warsaw. There was indeed a lot to piece together about his circumstances.
In the early days, ‘he was fairly forthcoming. More forthcoming than I was particularly prepared to be to begin with’. Cicely is referring here to the level of intimacy in their relationship. She was clearly fascinated by this wild, romantic, sexually assured artist, but held back by concerns over his commitment to her and the strong possibility that they might not be able to marry. She readily admitted that ‘he was playing fast and loose with me when he was being very much the free artist’46. He also seemed light on material resources, with little by way of regular income and insufficient prospects for that to change. As part of a loosely formed Polish University in Exile, that had been established in London in 1952, he gave lectures on Sunday afternoons in various galleries around the city and he saw his pupils on Saturday afternoon and Sunday morning. He adopted the title of professor, that stayed with him for the rest of his life and was used by others, if slightly improbably in the British context. He was clearly highly intelligent. If his English was idiosyncratic, he was fluent in German and Russian. He was also an accomplished mathematician and had taught the subject at a high level during his years of wartime internment. On one occasion, one of his captors, himself an accomplished professor of mathematics, heard Marian explaining an aspect of his own work to Marian’s fellow prisoners. Afterwards the officer told Marian it was the clearest exposition of that particular theorem he had ever heard. Cicely attended Marian’s London classes whenever she could, even when they were in Polish, and found him to be ‘a brilliant, brilliant teacher’47.
It was through these encounters that she eventually learned he had an Italian daughter. At the end of the war, ahead of the advancing Russians, Marian was in a long march along the Baltic, from East Prussia to the port city of Lübeck. (p.205) There, by Cicely’s account, he had a ‘terrific affair’ with a poetess. His lover’s cousin was second-in-command to General Anders, whose Polish forces had played an important part in the Italian campaign. Apparently to get out of a heated situation, it was arranged for Marian to go to Italy by army lorry. Staying in a hostel in Rome with other Poles, he soon met Maria Flagiole, who had lost her fiancé during the war. The story goes that she picked out Marian from the rest to be the father of her child. He seems not to have had a problem in assisting her. When a baby girl was born, Marian hastily arranged for his daughter to be baptised near St Peter’s. She was given the Christian name of Daniela, but took her mother’s surname. Marian then borrowed as much money as he could (he was still paying it off years later when he and Cicely first met) and gave it all to Maria for their daughter’s safe keeping. He told Maria he had been offered a professorship in Poland but would not accept it because of his anti-Communist sentiments. He then high-tailed it out of Rome and went to London: ‘[H]e just walked out and left them’. Daniela never saw her father for years and was told by her mother that he was in prison in Poland. But as a teenager, she learned that Marian was in London and, at the age of eighteen, she went there to find him. Although Cicely and Marian were acquainted by this time, it seems Cicely wasn’t told much (if anything) about these past events. As she rather under-stated years later about his daughter: ‘I wasn’t much in the picture about her’48.
Two years later, Daniela was back in London and was at one of the weekend lectures. When she suddenly felt unwell, Cicely offered to drive her to where she was staying with friends of Marian. There, sitting on the floor, Daniela poured out the whole account to Cicely, who was by now beginning to have inklings of what was going on. Daniela had brown eyes, fair hair, and was strikingly beautiful. Cicely could see she was Marian’s daughter. Daniela was also very angry. Unaware of the story about the money, all she knew was that Marian had abandoned his child and her mother, and for years had not been seen again. At the same time, Marian was drawn to his estranged daughter and wanted to see her more. Over the years, Cicely helped Daniela and her father to understand each other. When Daniela moved to Florence, away from her mother, Cicely and Marian visited her, but the encounter was tricky. Daniela then became successful in the conference-organising business. Eventually, she moved to San Francisco, where in 1980 she had a child of her own, named Maximiliana. Cicely and Marian travelled to see them the following June, when Cicely was in the United States for other visits. In time, Cicely came to think of Daniela as her step-daughter and they maintained contact in the future.
During the stumbling years of Cicely and Marian’s relationship, his means of support were tenuous. He was living in the dilapidated environment of the Polish White Eagle Club in Balham, south London. When it was hit by fire, his name card on the door was scorched, but he and his paintings were safe. He then moved to the Polish Y.M.C.A., north of the Thames, near Ealing, where (p.206) he had a big room from which he could run his classes and also entertain female friends. Things were improving from his early days in England, when he had supplemented his meagre earnings by painting naked girls on ties to sell to sailors. As his income picked up, he sent his wife over-the-counter drugs to sell for money in Poland. He seems to have been the most unlikely suitor for Cicely, the Roedean– and Oxford–educated Christian. Yet, she bought his paintings, quickly drew him into her circle (he features prominently in Cicely’s photographs of the St Christopher’s foundation stone ceremony of July 1965), and no doubt subsidised his day-to-day expenditures. For Cicely, it seems to have been worth it: ‘[H]e was fun, he was maddening, he was affectionate’.
Marian had good Polish friends who lived in Edinburgh and to whom he introduced Cicely. Wladek and Hanka Jedrosz had known each other in Poland before the Second World War. He was sixteen years older than her, had left his home country as soon as hostilities broke out, and later saw action in France before moving to Liverpool. Hanka was the daughter of a bridge builder and had joined the secret army in the Warsaw Ghetto. She was among the first group of women ever to be taken prisoner of war. When hostilities ended, she moved to Brussels, where she was the subject of extensive publicity. Wladek read the story in the Polish press and went to Belgium to find her. From there they made their way to London, before an opportunity arose in forestry work for Wladek in Scotland, at Carrbridge in the Cairngorms. As peacetime began to consolidate, he moved to Edinburgh and established his own business beginning in late 1947. A trained forester, with a degree, he set about making pit props. Hanka then began training as a psychiatric nurse, but lost a baby when she was struck by a patient. She decided to re-train as a teacher and went to Moray House teacher training college. They had a son, Aleksander, born in 1952, and Marian was his godfather. It was to this household that Marian made regular visits, especially at Easter and Christmas. Although Wladek’s business was not always going well, he faithfully sought to help Marian, keeping him well supplied with canvases of old works that he purchased in Edinburgh’s Grassmarket, as well as paints to use on them. On this basis, Marian was able to paint extensively when in Edinburgh — and seems always to have left the paintings behind when he returned to London. This environment, at once unfamiliar to Cicely, also gathered her in. The Polish language, the food, the powerful spirit of people in exile with no hope of ever going home — these were all rich cultural experiences for her. It was a very far cry from Hadley Hurst, but it was compelling, visceral, and a way to understand Marian better — who he was, how his friends saw him, and why they were attracted to him.
Cicely began to ponder a way forward for her Polish artist, one that would bring him closer to her on a day-to-day basis, but would fall short of the marriage (p.207) she really wanted and which he seemed so reluctant to consider. Over time, a suitable solution evolved in Cicely’s mind. She was fond of Wladek and Hanka. Like Marian, Wladek too was a colourful character, but his business was not going well and enforced retirement was looming. So, true to form, she offered Wladek a job as head of maintenance at St Christopher’s, whilst Hanka got a teaching job in the local Sydenham area. They moved to London in 1969, with Aleksander staying on in Edinburgh to complete his schooling.
In late 1968, Cicely decided to move from Restmorel House in Lambeth to Sydenham, where she could live closer to the hospice. She wrote to her landlord at the Duchy of Cornwall and gave notice of her intention to quit. The move took a whole year to realise, and it was just before Christmas 1969 that she left her rented flat behind, paying dilapidations of £84 16s in the process49. It was a practical relocation, but there were also other motives behind the move. For £11,000 she bought a comfortable house at 50 Lawrie Park Gardens, on a pleasant street just round the corner from St Christopher’s. There, with Marian and the Jedrosz’s, the two couples began a new life together under the same roof. As Cicely explained, the arrangement would bring ‘a degree of respectability for Marian and me, but also made it possible for them, because Wladek only had about £1,000 to put into the house’50. Characteristically, her brother John supervised the legalities, to ensure everything was in order, though Marian appeared to have nothing to contribute to the financial arrangements.
On moving in, Cicely had the ground floor mostly to herself, whilst Wladek, Hanka, and Marian lived upstairs (Figure 5.2). In time, Aleksander joined the household when he commenced college in England. Hanka took care of the meals and various domestic matters. They thought of it as their ‘Polish kibbutz’, and after some initial changes it was to prove a lasting domestic arrangement. The difficulties surfaced early but were quickly resolved. Tensions began to rise between the two women of the household. Cicely found Hanka interfering and possessive. Hanka found Cicely ungrateful and overbearing — points she later conceded were true51. Pragmatism prevailed. The house was split in two and henceforth they lived more separately. Marian moved downstairs to be with Cicely. He had his own room cluttered with the inter alia of his painting. Her friends and colleagues were tactful enough not to say much about the arrangement52. Though she and Marian never shared a bedroom until they were eventually married, she had indeed travelled quite a long way from the evangelical Christian and Billy Graham counsellor of the 1940s and ʼ50s. The estate agent’s daughter had at last bought her first property, albeit on a shared basis. She would live there for the rest of her life. Cicely and Marian were perhaps unusual even by the standards of the late 1960s; he was sixty-eight and she was fifty-one. Moreover, he seemed to come and go as he pleased and even kept on his room at the Y.M.C.A. for another dozen years until 1982, when he had his first stroke.
In the years that followed the new arrangement, Marian continued to paint and to be productive. He had space to work on the fourth floor of the hospice, as well as at home and in the Y.M.C.A. Cicely bought him a car, though he was a dreadful driver and burned out the clutch several times in the first few months. He enjoyed holidays with her and foreign travel together, as well as getting to know her friends in many parts of the world. In 1971 they took a three-week holiday in Africa. But doubts would flare up in her mind. In 1972 she was feeling mixed up — still unsure of her ongoing feelings for Tom West but also uncertain of her future with Marian. To disturb her emotional landscape further, on the night of 13/14 February she had a vivid dream about Antoni53. She had gone to bed feeling ‘all of me is wrong’ and dreamed that Antoni had come back. Cicely was going to China to give a lecture and he was in some kind of retreat in Japan. They met and walked through lovely dark trees. ‘I didn’t tell you I’d come back’, he said. ‘You’ve got your other life to do’. Cicely thought to herself, ‘Oh, I’ll have to tell him about Marian but I won’t do that yet’. Then they got to an unfinished town, with red gravel everywhere, and walked across a plank. Cicely turned to Antoni and said, ‘Well I’m going to have to go back and you won’t come with me, but it will be all right’. Yet they kept on walking and walking, something they had never done together in his lifetime. She woke up feeling ‘completely washed over’ and would not dream of Antoni again for another five years.
Marian’s wife, Zofia Lubienska, was still alive in Poland, a nervous and troubled person who constantly feared for her own safety, rarely leaving home. (p.209) Their son Andrei was also there, having taken up the academic career that his father had never realised, teaching in the University of Krakow. Then in 1975, Marian’s wife died suddenly in a house fire. If Cicely expected a proposal of marriage to be soon forthcoming, she was wrong. It was not until the beginning of 1980 that Marian padded into her room in the early hours and asked for her hand in matrimony, as long as it was kept secret. In a contradiction typical of her relationship with Marian, she wasted no time in accepting and quickly arranged a special licence for the ceremony to go ahead within two weeks. It was not the kind of compromise she would have accepted in her professional life. Seventeen years after they first met, Marian Bohusz-Szyszko and Cicely Saunders became husband and wife on 31 January 1980. She was sixty-one and he was seventy-nine. At the parish church of St Phillip in Sydenham, she was ‘given away’ by Gillian Ford, who also provided the celebratory lunch, and Tom West was the best man54. The only other guests were Wladek and Hanka Jedrosz. Cicely joked with Marian that the patrician Pole had waited for the English bourgeois, to become a Dame of the British Empire — announced just days earlier — before he would propose marriage to her. Another explanation might be that he was sensing his failing health and wanted to be sure that, in Cicely, he had someone to look after him when the time came, and indeed that would not be long. At first their news was kept from all but a tiny group of close friends. Marian, it seems, was still sensitive about how his Polish friends in London would react. Cicely told the whole story to her friend Grace Goldin in a letter of 15 February 1980. It had been a ‘most delightful mixed wedding for a mixed marriage, with two young priests, one Anglican and one Roman Catholic, and four friends only. It was very special (Figure 5.3). It makes more difference than you might think and is altogether splendid’55. Marriage was soon consequential for Cicely’s schedule and it placed increasing constraints on her travel. She quickly cancelled a planned trip to Israel, using the pretext that her new husband had a commitment at the same time that would be impossible to break56. It seems an odd inversion, given her role and status compared with his. Even more remarkable was news of the engagement of Tom West — and not to Cicely, as she repeatedly told people. In late middle age, and almost simultaneously, they had both found married life, but not with one another.
She later described her marriage as ‘fifteen years which were very happy — deeply, deeply happy’57. For most of those years, Marian’s health was a concern. At the end of 1980, in early December, he had a prostate operation but was soon recovered and busy organising an exhibition with one of his students and getting ready for his eightieth birthday in February. Just two years after they married, he had a stroke, in January 198258. It hit his speech centre and for a few days he found all talking difficult. Cicely took him to (p.210) a senior neurologist. His Polish gradually came back, but his English was ‘like talking though treacle’. Cicely was ‘thanking God’ that Wladek and Hanka were upstairs and able to see to him during the day when she was at St Christopher’s. She also gave notice that foreign travel would now be severely curtailed. Alarmed at his vulnerability, Marian quickly called on his friends to empty his things from the Y.M.C.A. From now on he would make the hospice his main space for teaching, and Cicely would rarely be far away if she could possibly avoid it. In July she wrote to Balfour Mount, pulling out of her talk at a planned autumn conference in Montreal. Marian was now breathless on walking but still managing to paint. ‘I just wish to keep him this way and he feels so insecure when I am away that I hate to rock the boat for him’59. By early September, Cicely was even refusing dinner engagements in London, on the grounds that Marian did not like going out in the evening60. Following a ‘mild transient ischaemic episode’ later that month, he was shaky on both legs, wouldn’t eat when at the Jedrosz’s alone, and declared himself ‘very weak’ when Cicely was out in the evening. Her marriage was closing in and she declared to Grace (p.211) Goldin: ‘I have now made the decision never to spend a night away’61. Soon, all long-haul travel for Marian was also ruled out of the question. In the coming years, many invitations were declined or sometimes cancelled at the last minute. Cicely would write regularly and in detail to her American friends on the ups and downs of the situation. Marian’s speech came and went with his vigour, his painting likewise. On one occasion when they were in Norwich to see Rosetta Burch, he visited the Catholic Cathedral and made a confession which did him ‘the power of good’62. He was reported to be ‘extremely happy and as long as I keep him feeling secure he looks well and paints well and enjoys himself’. Cicely had painted herself into a corner of her own volition, and now could adopt the caring role — not as nurse, almoner, or doctor — but as wife and companion. Despite its constraints on her movements, she was deeply fulfilled in her situation. Cicely had always known that one day Marian would need help, and had long determined that it would be she who would provide it:
Marian is fine, but only so long as he has the constant attention of his wife. It really is intensive tender loving care and he looks fit, has just completed a magnificent Resurrection for the Vatican, and is in the midst of a series of portraits. However, he really hates it when I am away, even for a day. Although he does not come in and out of my office very much while he is painting upstairs, he likes to know I am about in a splendidly demanding way63.
Soon she made changes to their home, installing a shower off his room when he could no longer use the bath. She dealt with the ‘Polish gloom’ that could accompany even a minor tummy upset64, yet felt fully affirmed in their marriage and found in him ‘a most enchanting husband’.
Despite his problems, Mariam continued to paint ‘with as great strength, conviction, and creativity as ever’65. They holidayed with Cicely’s friend Carleton Sweetser and his partner Dieter, in 1981, just as she came into a handsome legacy from her father’s estate, that paid for all the drinks66. In summer 1983, after a holiday of two weeks together with them on the Isle of Wight, Marian painted a portrait of Sweetser in just four sittings67. There were also enquiries about Marian’s work from farther afield, and a collection of postcards and reproductions was made to capture his achievements. He was interviewed by Shirley du Boulay for Cicely’s biography; but, according to Cicely, he did not come across ‘in his full glory’68. By the spring of 1985, however, Marian had developed ‘heart block’69. In May he was fitted with a pacemaker, that brought about significant improvement, allowing him to walk into the hospice to paint in his studio there. Despite this, in August a trip to Lake Maggiore was cancelled when Marian had a series of nose bleeds. If he was relieved not to go, Cicely was not, and ‘could have done with a break (p.212) myself’70. Indeed, it turned serious and Marian had to be admitted to St Thomas’s Hospital for three weeks. She even feared she might lose him, but he rallied and, in due course, by late December, he was home. The following month he was back to painting, gathering together a large collection of pastel works made during his illness and convalescence, and planning an exhibition. It was a pattern of rise and fall that would continue for much of the next ten years.
Clinical Themes and Issues
During these years as medical director of St Christopher’s, Cicely maintained the flow of her clinical writings. An article that appeared in 1968 in a Catholic quarterly ‘for the sick and those who care for them’ elegantly captured the hospice orientation to care in the last stages of life71. It called for a positive approach at a time, not of defeat, but of life’s fulfilment. Such an approach could recognise the many possible paths to life’s ending, in which comfort and care become the prominent aims through a ‘middle way’ between too much and too little treatment, and where understanding and empathy are vital. We can also see in this article a theme that Cicely had first picked up a few years earlier — the growing attention to notions of personhood, particularly in the family context. Influenced by ideas from Colin Murray Parkes, along with colleagues in the United States, this notion had also been explored in the group discussions at the hospice. The greater focus on families was regarded as an important distinction between care at St Christopher’s and the approach Cicely had seen at St Joseph’s. The emphasis on person speaks in turn of a growing influence from psychology and theology. It was developed more extensively a few years later.
Cicely had become pre-occupied with the person as someone in inter-relationship with others and how the person, thus seen, is ‘being’ in the face of physical deterioration. At such moments, ‘full-time concern for the patient’ becomes essential. This is neatly captured in the statement that professional work in this area has two key dimensions: ‘We are concerned with persons and we are concerned as persons’72. This notion of ‘being’ also found its way into Cicely’s everyday language and she became fond of using phrases such as ‘she was being very bereaved’ or ‘I was being rather lost about things’. It is an odd syntax but cropped up so frequently (for example, during interviews) that it tells us something important about Cicely’s orientation to the world and, indeed, her own manner of ‘being’ within it.
‘Being’ in this approach to caring could be costly to those who gave it. At St Christopher’s, the emphasis was upon the development of a (p.213) multi-disciplinary team which could work together to explore the needs of individual patients at the deepest level, but which could also support and enrich itself not only through the inclusion of a range of professional perspectives, but also by the involvement of volunteers, as well as the children of staff and the elderly residents who were accommodated in the Drapers’ Wing. In this way, a sense of community was fostered and enriched which might also serve to ameliorate the consequences of work involving constant exposure to loss, sorrow, and bereavement. In addition, specific attention was also needed to support the staff, and this was fostered through small-group discussion and the regular involvement and psychiatric perspective of Colin Murray Parkes.
We have seen that Parkes had been part of Cicely’s development since the earlier years of the 1960s, when they met in London and Boston. Initially, he was suspicious of this evangelical Christian and her motivations with regard to dying people. Would she exploit their vulnerability for religious ends? At the same time, he was drawn to her enthusiasms and drive. He thought of her ambition for St Christopher’s as a kind of therapeutic community, and he encouraged her in thinking about it that way, drawing on the ideas of Maxwell Jones and others73. She also became interested in the work of Jean Vanier and his L’Arche communities for people with learning disabilities, something that was reinforced when Vanier’s sister, Therese, came to work as a doctor at the hospice. Somebody once drew a cartoon of Cicely with a castle in the clouds, it was called ‘St Christopher’s Hospice’ and she was underneath pulling the castle down to earth. The image resonated with Parkes, who felt this was exactly what she was trying to do, to create something almost heavenly on earth. There was a mutual sense of apprehension between them when she invited him to do sessions at the hospice, but he nevertheless agreed. She was glad that he accepted. He was well known and conferred a sense of respectability on St Christopher’s at a time when it badly needed to establish a good reputation. At the same time, she was showing him the way, what could be done, and that there was no such thing as ‘the hopeless case’74, a phrase used by C.J. Gavey in the early 1950s, and for whom Parkes had actually worked. Parkes sensed there was so much more which could be done for the dying and bereaved, but he approached Cicely and the new hospice with a degree of caution nevertheless.
The week before he began at St Christopher’s, Parkes had a nightmare75. He was going from bed to bed in a hospital where people were being tortured and there was nothing he could do about it. His feeling of utter helplessness in the dream made him question what he was going into. Though Cicely could bring about quick results with her knowledge of pain relief, the psychological suffering of the patient was less amenable to rapid transformation. Parkes was drawn to the idea that a community could be created which would be helpful to patients and families. He was interested in families and family psychiatry, (p.214) and had a lot of knowledge about grief and loss which had obvious relevance in the hospice. On one occasion Cicely told him:
The worst minute for me is when I have to say goodbye to the families because, during the patient’s illness, I’ve often got to know those family members very well, and then the patient dies and they all come and say goodbye and I realise, just when they need me most, I’m losing them, or they’re losing me. I want to change all that. I want somehow to retain a link with the families, particularly those who need it, so that we can continue to help them76.
This was what Parkes wanted to hear. He was interested in reaching out to relatives before they were bereaved, when he thought he could anticipate their problems. He wanted to get across the idea that the unit of care in the hospice is not the patient, with the family as an optional extra, but should be the family, of which the patient is a part. But Parkes soon realised that he was set to be inundated by the referrals he was receiving at St Christopher’s. He could not see them all individually, nor was it appropriate that he was asked to deal with psychological matters whilst physical problems were attended to by others. It was a false dichotomy and ran counter to the inter-related conceptualisation of ‘total pain’. Moreover, he was only there one day a week, and yet every other patient was being referred to him. A different approach was needed. Parkes was a realist. He took the view that holism was a ‘pious dream’. There needed to be a more effective way to deal with all the problems that were being presented. So, he set about supporting the nurses, doctors, and other staff to deal more directly with psychological problems. If he saw a patient, it was to advise on what others could do to help and to use the opportunity to teach about his ideas and methods. In the same way, he set up an association for bereaved families who wished to come back to the hospice. It was quite informal and was known as the Pilgrim Club. They were trying new things, experimenting, taking risks.
Science and Art
Cicely was coming at the issues from all sides. From the outset, there was an emphasis on the science and the art of caring at the hospice. She knew that there would have to be some kind of recognisable research to validate the work they were doing. But, she was also aware that the process of the work was as important as its outcomes. She was determined that this ‘community’ would be a place to do things differently, to think differently, and where volunteers, staff, patients, and families could find some sort of meaning at a time of great demands on the human spirit. But in a pamphlet published in 1967, Cicely had also mapped out the need for evaluation of the St Christopher’s approach77. She saw that research was needed to under-pin the work in a structured way. For the first five or six years, very little was published. However, by 1978, (p.215) some important evidence was emerging from research studies. She was fortunate to have Parkes’s skills as a researcher as well as a clinician. Over time, he built up a cohort of cases consisting of 276 patients who died of cancer in two London boroughs, forty-nine of whom were still under active treatment at the time of death. He found among them much unrelieved pain, whether the patient died in a hospital or at home, and, as patients came into the study, he was able to show that people with serious pain problems were referred from the start to the hospice, and their pain was largely relieved78. Unrelieved pain, as reported later by families, was found among only eight per cent of patients at St Christopher’s, compared with twenty per cent of those in local hospitals and twenty-nine per cent of those being cared for at home79. The work was repeated ten years later as part of the ongoing evaluation of the hospice. Although pain and symptom control improved in the hospital setting over time, psychosocial needs and continuity of care continued to be better approached in the hospice80. Parkes also conducted an important evaluation of the domiciliary service. It was based on evidence taken from surviving spouses of those who had been supported at home, as well as a comparison group of those who had not. Published in 1980, it drew upon interviews carried out in 1974 through to 1976, usually about thirteen months after the patient’s death. Even though those receiving the service appeared to have more problems and a greater burden of symptoms than those in the comparison group, the results were compelling. Those on the service were able to stay at home longer before they died and spent less than half the amount of time in hospital. The costs of the home-care service were about one quarter those of the inpatient care which it avoided. Family members also reported very positive feelings about the help they had received and the reassurance it had provided81.
Such work was badly needed. In 1973, in a volume on health services research, Cicely and Albertine Winner presented the problem quite starkly: ‘The position of terminal care in this country is at present unsatisfactory’82. Although interest in research into this work was growing, much of it remained descriptive and anecdotal, and high-quality studies were desperately needed to promote a rational approach to the care of the dying. Small achievements could be significant, such as when Cicely was asked to write a chapter on terminal care for a volume on the scientific foundations of oncology83, and the editors thought it necessary to explain their reasons for including a contribution from such an underdeveloped medical field with scientific foundations which were only just being laid.
October 1970 saw Cicely in the United States for a high-powered symposium on ‘catastrophic illness’. Elisabeth Kübler-Ross was a fellow contributor, speaking on coping patterns of patients who knew their diagnosis. In the published proceedings, Cicely’s article on ‘the patient’s response to treatment’ contains thirty-five clear black-and-white photographs taken at St Christopher’s and in patients’ own homes. They show patients and staff (p.216) singly, in groups, and with relatives. Three of the photographs are of artwork produced by patients. One shows a drawing of her pain made before admission to the hospice and is contrasted with another made three months later, when the patient was about to return home. A third, made four days before a patient died, shows a child standing fearlessly before a dragon (of death) which is being fed flowers. Taking up the theme of the conference, Cicely advanced the notion that, whilst catastrophe is defined in the dictionary as ‘a disastrous end’, it can bring good from people and serve to bind them together — something seen repeatedly at the hospice. Seven photographs, with associated commentary, reveal a range of dispositions in response to illness: feelings of threat, doubt, longing, anxiety, depression; denial; resolute cheerfulness; weariness; and fighting back. In one example, Cicely says: ‘ “Mrs E., . . . couldn’t you just let go?” Her reply: “Well, you know I might if you went away” was astringent as ever but came from real friendship. Next morning she died quietly’.
In this tour de force, Cicely emphasised the inter-connections of science, art, and religion in the care of those with life-threatening illness. The science at St Christopher’s, she explained, was in a programme of research which included psychosocial studies of grief and bereavement as well as pharmacological work on the relative merits of different narcotics and their management, plus planned studies on the control of symptoms other than pain. The photographs show how the relief of pain and these other symptoms can sub-serve important work which patients and families may need to undertake in the final weeks and months of life. But whereas ‘science tries to look at things in their generality in order to use them, art tries to observe things — and people — in their individuality, in order to know them’. It was a powerful distinction.
The photographs illustrate the importance of welcoming patients to the hospice and the involvement of the staff’s own children in the life of the community. One shows a patient busily writing her life story. Here, Cicely is making it clear that ‘the art of medicine is concerned with values and therefore judgements. It is the way we look at the essence of a situation, at people with their particular needs and at what is relevant treatment for them’. This is further amplified in the distinction between ‘the path of vigorous treatment’ and ‘the way of doing nothing’, both of which are judged to be wrong. Instead, Cicely states in a memorable phrase: ‘we are called on to find the middle way of responsibility and judgement’.
Finally, the dimension of religion is explored, surprisingly defined as ‘the field of personal relationships between people prepared to give themselves to each other in the context of a common life’. In this context, the relationships between staff and patients and between patients and their relatives are of particular importance. ‘We are a community, and this kind of caring and involvement is a religious commitment for many of us.’ Cicely suggests here that there is too great a division between the well and the ill, which masks the unity that exists between them. Illness and suffering should not simply be accepted (p.217) without trying to help, ‘but it does mean that we are not the only givers’. Just three years into the operational life of St Christopher’s, the founder had succeeded in framing its purpose and values with remarkable richness and clarity.
In 1976, Nursing Times published a revised and updated set of Cicely’s articles which had originally appeared in 1959 and caused so much interest at that time. There was a sense that the field of terminal care was beginning to consolidate. There were opportunities to review changes that had occurred during the previous seventeen years and to address new debates, issues, and contexts. By now, the increasing use of the term ‘palliative care’, was coming to denote the transferability of ideas developed in the hospice into other settings, including hospital and home, as well as a broadening reach beyond those imminently dying.
The new terminology had originated with Balfour Mount, a Montreal–based surgeon working at the Royal Victoria Hospital. His first contact with Cicely started inauspiciously. In 1973 he was developing an interest in the care of the dying at his own hospital. He had read Elisabeth Kübler-Ross’s book On Death and Dying and noted the references there to Cicely Saunders and her publications. On impulse he decided to telephone her at the hospice. Connected immediately, Cicely told him she was on her way to lunch and he should call back in an hour. He dutifully did so. ‘Now exactly what is it you want to do?’ she asked. He explained he would like to come over for a visit for a few days to take a look at the hospice and how she worked. ‘I know you’, she replied, to his bewilderment. ‘You want to come over with your wife, see a few plays, drop in and take a look around, and then go back. Well I won’t have it. Leave your wife at home, come over prepared to roll your sleeves up, stay for a whole week, and I’ll have you’84. Astonished, Mount was instantly in her thrall. He arranged a visit immediately and was at St Christopher’s within days. Completely impressed by the care being delivered at the hospice, he was concerned nevertheless that the approach could never meet the great level of need that existed in the wider healthcare system. He suggested to Cicely that a pilot project should be conducted to see if the hospice approach could be transplanted to the hospital context. ‘That would never work’ was her initial reaction. Undeterred, he returned to St Christopher’s the following year for an extended visit. His medical colleague Ina Cummings also undertook a period of training there. Indeed, it was her calming, clear perspective and presence which were so important in drawing together the team in Montreal and helping to decide how the St Christopher’s model could be integrated into a teaching hospital setting85. By 1975, they were operational with a service in the Royal Victoria Hospital.
(p.218) It was in this context that, musing as he shaved one morning, Mount came up with a new name for this whole approach. At one level he liked the term ‘hospice’ — as an adjective as well as a noun — mainly because he thought no one would know what it meant. But then he became aware that ‘hospice’ had less-attractive associations in the French language, being more associated with institutional, even custodial, care. He also knew that medicine often made use of ‘palliative’ treatments when disease could not be reversed. He hit on the idea of ‘palliative care’ that could be delivered in a specially designated unit. Cicely was uncertain about the new term at first, as was Dr Robert Twycross, her research fellow. She told Twycross that some Canadians, like John Scott, didn’t like it either, preferring the more positive and community orientation of ‘hospice’86. But sensing its possibilities, she quite quickly embraced it in the coming years and readily cited Mount and Montreal as it source. In truth, the neologism was to prove hugely consequential as it entered into use across the world and sounded out the message that hospice principles could be practised in many contexts. It was not the setting that was important, but rather the approach to care that was being adopted.
One aspect of this changing approach was to think about how it could be applied to people with conditions other than cancer. This is something often overlooked by commentators on the history of hospice who fail to acknowledge that, whilst the main appeal of places like St Christopher’s in the early days was particularly in relation to those with advanced malignancy, there was a concern too for those with other conditions. Until the arrival of Tom West, Cicely had a very part-time deputy in Albertine Winner. It was another of Cicely’s informal appointments and served as a measure of support and practical help to the medical director in busy times. Upon her retirement, Winner moved from her government post back into clinical work, via a refresher course at the London Hospital. The two then shared an office together at the hospice. A trained neurologist, Winner began exploring how the work with long-stay patients could develop. They were mainly cared for in Nuffield Ward. At first, Mrs Medhurst was there, along with ‘Chuckles’, who was meant to have cancer but perhaps didn’t. Then, quite quickly, there were two then three people with motor neurone disease (M.N.D.), and one with Parkinson’s disease. Winner saw that these patients had their own particular needs and the hospice should be doing something for them in a more concerted way. They came to be an important aspect of the life and culture of the place, creating a cadre of influence not unlike those influential and inspiring patients Louie, Alice, and Terry at St Joseph’s. They also brought with them new kinds of clinical challenges.
Winner and Cicely could see there were special issues with this group of patients. Communication was uppermost. For those with M.N.D., speech was (p.219) almost inevitably impaired. Then came the heavy nursing load as they became more physically dependent and problems of breathlessness became more intransigent. An early patient was Valerie, who had been in the Girl Guides. One Christmas, two former Guides were volunteering and spending time with Valerie. The two worked out that they could communicate with her by blinking in Morse code. Cards were created with each of the letters in code. Cicely would ask on a regular basis if Valerie had any special needs and then Miss Packer would come in to transcribe painstakingly the ‘coded’ messages of reply. In Cicely’s view, this combination of volunteers, an inspired solution, and the involvement of someone from the Draper’s Wing could ‘all knit together’ in a way that made the hospice approach effective and special. Looking back years later, she could remember the M.N.D. patients by name. Ted Hole and Sydney Fellows spent five years each at the hospice. They became ‘absolutely enshrined’ in her memory. She wrote about some of them extensively — Barry, who was only twenty-eight, and William, the police sergeant. ‘They were patients but they were very profound friends’87. They were also becoming a second specialist area of interest within the hospice, in addition to the care of those with advanced cancer, and by 1981 it was possible to write up a publishable account of the first one hundred patients cared for at St Christopher’s with M.N.D88.
There were forty men and sixty women in the group. Twenty of the patients had been in the care of the domiciliary service before admission. Mostly the clinical picture was one of progressive wasting of the muscles, especially those of the upper limbs, combined with corticospinal tract degeneration. The patients were admitted to four or six bed bays and were encouraged to become part of the hospice community. The majority had a considerable insight into their condition and welcomed discussion of it. But at the same time, ‘truth may be implied but not discussed, may be deliberately avoided or spoken of apparently realistically but with no real comprehension’89. These ambiguities and subtleties had become so typical of Cicely’s thinking about the situation of those with advanced cancer. Now in the protracted course of a neurological disease, they seemed even more relevant. Sharing fears could help sort out those which were realistic from some of the unrealistic horrors which could surface. Many worries had a constructive response, especially when explored with the patient, doctor, and nurse together. It was found that ‘[t]he capacity of most people to adjust gradually to an unwelcome situation and finally face it has given the staff courage to trust them with truth when it has been demanded’90. This was rarely a cause for regret. In short, Cicely learned that patients with neurological disorders, and their families too, seemed able to benefit from the hospice setting. Most integrated well into the hubbub of St Christopher’s, and accepted the deaths of cancer patients that occurred frequently around them, but some found this wearing and were, in time, given single rooms. Children and grandchildren were regularly present in the hospice wards, and (p.220) there were frequent days out and visits. Most of the families appreciated that St Christopher’s did not have visiting on Mondays, and they could regard this as a day of rest. That said, if anyone arrived from a long distance, then the Monday rule was relaxed and visitors were made welcome. As one relative put it, ‘there were rules and no rules’91.
Two of these patients produced articles for publication in healthcare journals92, one making use of a Possum apparatus which he controlled from the only movement he had, his head, and which lit up the letters he selected. Cicely spent many hours with him as he painstakingly set out his ideas. But despite the strong presence of these patients in the hospice and the contribution they made through their time there and, in some cases, the writing they did about their experience, such an approach became less favoured over the years. Whilst Cicely had made a central notion of the hospice as a community which would include longer term patients and residents, in due course changing clinical norms and cost pressures conspired to reduce the time such patients spent there. Modern palliative care would make the inpatient hospice a place for specialist pain and symptom management, after which many patients would return home or move on to other forms of residential care. But, during the first dozen years of St Christopher’s, there was scope to experiment. Cicely and her multi-disciplinary team, that included the physio- and occupational therapy so important to these patients, found for them new ways of living with life-threatening disease. There was painting, chess, typing, writing or dictating poetry, a listening library, collage, even a wine-making set. If the long-term presence of the M.N.D. patients at St Christopher’s was to diminish, Cicely was nevertheless doing two important things. First, she demonstrated such patients did belong within the hospice philosophy and, second, she provided practical examples of supporting them which could be used and adapted in other settings. It could be captured in the words of one of the patients to Cicely, towards the end of his two years in St Christopher’s: ‘not a catastrophic illness, a coming together illness’93.
A Landmark Volume
In 1978, Cicely’s first book — for which many had waited so long — finally appeared. So busy had she been that she had let in Richard Lamerton with a first volume on the hospice approach to care of the dying. He wrote to stimulate both professional and public interest, and a revised and expanded version of his book was later published by the popular Pelican imprint94. Hers was a more technical document of record, an edited volume with contributors who had been involved directly with the work of St Christopher’s. This is the book which, over a long period, so many had been encouraging Cicely to produce. It was to go into multiple editions, with additional editors, in the years that followed. In the first edition, Cicely wrote the preface, an opening (p.221) and a closing chapter, and she also inserted detailed editorial notes at the beginning of some chapters and addenda at the end of others. These were all characteristics of her passion for detail, or even an over-weaning predisposition to intervene. Her beginning chapter was important in opening up a debate about the relationship of terminal care to the ‘cure’ and ‘care’ systems, arguing that no patient should be inappropriately locked into one or other system95. From there, a broad definition of terminal care was outlined — an absence of suffering, preservation of important relationships, an interval for anticipatory grief, relief of remaining conflicts, belief in timeliness, the exercise of feasible options and activities, and consistency with physical limitations, all within the scope of the dying person’s ego ideal. As in earlier written works, a subtle and non-dogmatic approach was proposed by Cicely on the issue of truth-telling, that she saw as a matter, based on a relationship, of finding ‘the particular truth which is fitted to our patient’s need’.
Thereafter came chapters from others on pathological, physical, and psychological aspects of care; on pain and other symptoms; on radiotherapy, chemotherapy, and hormone therapy; and on surgery; as well as on inpatient, outpatient, and home care; plus the National Health Service, the law, and ethics. The contributors included many who had been involved with the work of St Christopher’s and others with a substantial interest in the field. The frontispiece reproduced a painting by a St Christopher’s patient, used subsequently in teaching, to illustrate the concept of ‘total pain’. The book, The Management of Terminal Malignant Disease, was the first in a series, and the editors noted that: ‘Some of the material is controversial, and no effort has been made to iron out what are sometimes quite marked differences in opinion’.
The concluding chapter, ‘The Philosophy of Terminal Care’, began with Cicely’s re-statement of the concept of ‘total pain’, including a reply to one of its detractors. It also explained how, following a conversation with a patient, she ceased to use the expression ‘terminal patients’ in favour of ‘patients with terminal illnesses’. The chapter emphasised the need to focus on patients wherever they happen to be. It was not a manifesto for hospice as panacea; indeed, Cicely clearly states its role in relation to other elements within the care system:
A few hospices will be needed for patients with intractable problems and for research and teaching in terminal care, but most patients will continue to die in general hospitals, cancer or geriatric centres or in their own homes; the staff they will find there should be learning how to meet their needs.
In this first book, she had already seen the wider context and what would become the ‘mainstreaming’ of palliative care in the future. Thus contextualised, she detailed the essential elements in the management of terminal malignant disease: concern for the patient and family as the unit of care; management by an experienced clinical team; expert control of the common symptoms (p.222) of terminal cancer, especially pain in all its aspects; skilled and experienced nursing; an inter-professional team; a home-care programme; bereavement follow-up; methodical recording and analysis; teaching in all aspects of terminal care; imaginative use of the architecture available; a mixed group of patients; an approachable central administration; and the search for meaning. The chapter was the distillation of twenty years of detailed clinical practice, self-reflection, and research. The book may have been slow in coming, but it was a hugely solid landmark in the evolution of her approach and a demonstration of how others were developing it. Within a few more years, in a chapter Cicely wrote for a book edited by Manchester–based pain expert Mark Swerdlow, she went to even greater lengths to suggest that the ‘terminal’ condition of a patient may not be an irreversible state, and ‘active’, ‘palliative’, and ‘terminal’ care could each be seen as overlapping categories96. The idea of hospice as a place to tuck up terminally ill people quietly, out of harm’s way, was steadily pulled apart — and reconstructed as something far more consequential.
The Maturing of Ideas
There could be no straightforward and simplistic blueprint for the hospice which had been established around the ‘window’. The rise of hospice and palliative care in a distinctly contemporary guise was now taking place against a backdrop of modest but growing clinical, educational, and research interest97. For Cicely, this effort was about establishing the modern science and art of caring for patients with advanced malignant disease, as well as drawing attention to those with many other conditions who might benefit from the approach. In particular she was eager to see studies on the science of pain control and the underlying pharmaco-kinetic mechanisms at work in the administration of strong opiates. This began with close scrutiny of the methods of pain relief favoured within the early hospices and terminal-care homes, in particular the use of the so-called Brompton Cocktail98, that had been gaining popularity throughout the twentieth century — a mixture of morphine hydrochloride, cocaine hydrochloride, alcohol, syrup, and chloroform water, but with many local variants and names.
The Demise of the Brompton Cocktail — Robert Twycross
Such mixtures had become widely adopted and were made available for the patient to drink on demand or at regular intervals. In 1952, the Brompton Hospital had produced its own supplement to the National Formulary and the mixture appeared in print for the first time under the name ‘Haustus E.’ (‘Haustus’ meaning a draught or potion, and ‘E.’ perhaps ‘elixir’). This (p.223) version was then listed in Martindale’s Extra Pharmacopoeia in 1958. In 1976, buoyed by its use in the newly opening hospices, it had appeared in the British National Formulary and gradually had come to be known by several different names: Brompton Cocktail, Brompton Mixture, Mistura euphoriens, Mistura pro moribunda, Mistura pro euthanasia, even ‘Saunders’ Mixture’. Some practitioners in the United Kingdom favoured diamorphine over morphine; some even dropped the cocaine and used morphine and diamorphine together in the mixture99. It was not universally favoured or understood. Much of the fear came from a lack of knowledge about how to use morphine properly. Professor Duncan Vere, reflecting back in later life on his experience in London in the mid 1960s, refers to the formula as ‘Mist Obliterans’ —‘a matter of patients being rendered so that they did not know what they were doing by doctors who certainly did not know what they were doing’100.
In her early writings, Cicely had been eager to promote this rather exotic formulation, but it was St Christopher’s research fellow Robert Twycross who set out to scrutinise the potion in detail in what became a series of classic studies, the first of their kind undertaken in the hospice setting. Twycross had first met Cicely in the freezing winter of early 1963 at an international Christian student conference where she was one of the senior members in a workshop on ‘health and healing’. Her contributions and reflections resonated with him. The following year, whilst still an undergraduate at Oxford University, he created the Radcliffe Christian Medical Society simply to give a pretext for inviting her to speak there on the management of pain in terminal cancer. Cicely stored away these things — as we have seen, from quite early days she was on a personal recruitment campaign to attract the right people to St Christopher’s. So it was that five years later, in 1968, an invitation was duly made to Twycross to join her team at the newly opened hospice. Perhaps surprisingly, he declined the offer, in favour of completing his Membership of the Royal College of Physicians, and it was not until 1971, and following the death of Ron Welldon, the first clinical research fellow, that with further encouragement from Cicely, he finally began work at Sydenham. It was typical of her tenacity — a talent like Twycross first identified in 1963, eventually brought into the coop eight years later101.
Now, Twycross subjected the Brompton Cocktail to unparalleled clinical and scientific scrutiny. Over the next few years his work focussed on a number of areas: standardisation of the mixture, the relationship between the active constituents and the vehicle, the keeping properties of the mixture, the role of cocaine within it, and also the relative efficacy of the morphine and diamorphine. Indeed, between 1972 and 1979, Twycross produced thirty-nine publications on these and related themes. Towards the end of the period, he reported on an important breakthrough in a controlled trial of diamorphine and morphine in which the two drugs were administered regularly in a version of the Brompton mixture containing cocaine hydrochloride in a ten-milligramme (p.224) dose102. A total of 699 patients entered the trial and, of these, 146 crossed over after about two weeks from diamorphine to morphine, or vice-versa. In the female crossover patients, no difference was noted in relation to pain or other symptoms evaluated, but male crossover patients experienced more pain and were more depressed while receiving diamorphine, suggesting the potency ratio was lower than expected. Twycross concluded that if this difference in potency is allowed for, then morphine is a satisfactory substitute for orally administered diamorphine, but the more soluble diamorphine retained certain advantages when injections were required and doses were high. In a second trial103, that was described in a letter to the British Medical Journal, the morphine and diamorphine elixirs were compared with cocaine added and without it. There were forty-five satisfactory crossovers, and because the trends within the morphine and diamorphine groups were similar, they were combined for purposes of analysis. The study showed that introducing a ten-milligramme dose of cocaine after two weeks resulted in a small but statistically significant difference in alertness; but, stopping cocaine after this period had no detectable effect. Twycross adjudged that, at this dose, cocaine is of borderline efficacy and tolerance to it develops within a few days.
As a result of this work, in May 1977 — almost exactly a decade after opening — the routine use of cocaine with patients at St Christopher’s was abandoned and, in particular, morphine was prescribed alone in chloroform water, together with an antiemetic when indicated. Cicely, through the work of Twycross, had tested her intuitions and found them wanting. She had then acted on the consequences. In 1979, as one of three chapters he wrote for the important trilogy Advances in Pain Research and Therapy, edited by John Bonica and Vittorio Ventafridda, Twycross drew together his summative statement on the matter104. There had been, he suggested, a tendency ‘to endow the Brompton Cocktail with almost mystical properties and to regard it as the panacea for terminal cancer pain’. Generously, he allowed that if the physician is aware of the potential side effects of the main ingredients, then its use might be maintained. But set against this was the disadvantage to the pharmacist, the potential unpalatability to the patient, the higher financial costs incurred, and the restricted potential for the physician to manipulate the doses given. The Brompton Cocktail was about to depart from the received wisdom of the new palliative-care community. Cicely and Twycross, with support from Duncan Vere at the London Hospital, began to see the wider implications of all this. It became clear that simpler, more predictable means of pain control could be adopted; that narcotics could be used safely; and, in particular, that morphine was just as effective as diamorphine.
At St Christopher’s, Twycross and Welldon before him, had been early in a sequence of talented doctors who began to forge both the clinical and the evidence base for the new field of hospice medicine. In 1976, Twycross moved to Oxford to lead his own National Health Service hospice. There he continued (p.225) the pain work with new fellows working under his direction, first Dr Geoffrey Hanks and then Dr Claud Regnard — two doctors who later had a significant impact on the field in their own right. Initially, the junior doctors at St Christopher’s were graded as senior house officers. Then the hospice began to take registrars for training, and for a period it was the only place that did so. In the years leading up to 1987, before the specialty was formally recognised, it became a magnet for young doctors seeking to be trained in this new branch of medicine. In total, thirty-three doctors availed themselves of this opportunity until a formal training programme in palliative medicine became available through the medical Royal Colleges105. Many of these early registrars moved on to become medical directors in other places as the great expansion of independent hospices got underway during the 1980s, when ten new hospices opened every year. The teaching of these people fell mainly to Tom West and Mary Baines, and, to a lesser extent, Cicely, who for much of the time was now pre-occupied with things beyond the immediate clinical realm.
Total Pain Further Explored
During the early years at St Christopher’s, Cicely’s concept of ‘total pain’, first laid out in the important papers of the mid 1960s, was further elaborated by researchers, clinicians, and indeed patients themselves. It was important to Cicely. She drew on it heavily in her teaching and writing, and she was keen to develop it further, sensing that it resonated with many people. The concept entered into the fabric of daily life at the hospice and became a defining feature of its philosophy and approach. By 1985, and her retirement as medical director, palliative medicine was just two years away from specialty recognition in the United Kingdom. It is not unreasonable to view the concept of total pain as a major element within the armamentarium of the new discipline. Its influence was powerful and wide-ranging.
When considering Cicely’s writings on total pain and related subjects, several publications in the period 1968 to 1985 merit attention. The notion that chronic pain presents particular challenges to the clinician is regularly stated in her work at this time. In particular, it is seen as a problem on the level of meaning, for such pain can be timeless, endless, meaningless, bringing a sense of isolation and despair106. This is in stark contrast to the acute pain, familiar in teaching hospitals, which so often is seen as purposive — for example, in the diagnostic process as an indicator of problems or post-operatively as a staging post on the road to recovery. An important chapter published in 1970 describes chronic pain as ‘not just an event, or a series of events . . . but rather a situation in which the patient is, as it were, held captive’107. Cicely saw that in terminally ill patients, a major challenge is to avoid the onset of such pain by active strategies of prevention — in particular, the regular giving of strong analgesia in anticipation of, rather than in response to, the onset of pain. She (p.226) had first seen this in action at St Luke’s, and in her days at St Joseph’s she had adopted the oft-repeated maxim: ‘constant pain needs constant control’. At the same time, she always emphasized the value of listening, as in the patient who said ‘the pain seemed to go by just talking’. If terminal pain could be regarded as an illness in itself, then the use of drugs would not simply be a matter of technique, but also the expression of a commitment between one person and another. She was also being encouraged by Mary Baines to ask more about the causes of pain108. In short, Cicely’s thinking and practice were moving to new levels of sophistication and subtlety.
Crucially, she saw the relief of pain as the most vital component in confronting the issue of euthanasia, for pain in the final stages of cancer is something that had attracted the imagination of the public and was a regular theme in public debate109. It was therefore important to demonstrate to the public that pain could be avoided. The use of moderate doses of strong opiates was a core feature of this. For example, during the 1970s, only ten per cent of patients cared for at St Christopher’s Hospice needed a dose of more than thirty milligrammes of diamorphine. Moreover, it was found that by providing physical relief, opportunities then arose for communicating with the patient on a much deeper level, not least on the complex issue of what to disclose about the prognosis.
But Cicely also had to beware of mis-interpretations of her approach. There was unwelcome publicity following the screening on German television of a film about the hospice in 1971, in which St Christopher’s was portrayed as some kind of ‘death clinic’. That same year, she cautioned one American correspondent that she was not intending to induce a ‘high’ in her dying patients and was certainly not in favour of the use of L.S.D., that she regarded as a dangerous drug she would never use110. Despite this, and to Cicely’s dismay, St Christopher’s was linked to the use of L.S.D. in articles which appeared in The New York Times and Newsweek in December 1971111. The following year she wrote a slightly hectoring letter to Elisabeth Kübler-Ross requesting that she did not use the phrase ‘hospice for the dying’ when referring to St Christopher’s112. By the late 1970s, enquiries from journalists about visits and interviews were mounting. She was particularly anxious that foreign-language pieces gave an accurate representation of the work of the hospice. When a Swedish journalist made a request to visit, she pointed out rather sharply that a more economical use of time would be for him to talk to nurses in his own country who had already been to Sydenham and were well acquainted with the St Christopher’s approach113.
Despite such concerns and irritations, over time there was a growing confidence within the world of hospice that the complex and multi-layered symptoms associated with terminal pain could be attended to effectively by a combination of the well-informed use of narcotics and a sophisticated understanding of the emotional, spiritual, and social problems which might also (p.227) occur for those with terminal illness. ‘Total pain’ had become firmly established as a central concept within the emerging palliative care specialty and was proving useful in clinical work, in teaching, and (to a lesser extent) in research.
The New Science of Pain Relief
By 1973, it had become possible for Cicely to refer more fully to some of the research on pain being carried out at St Christopher’s114. Pain was acknowledged to be a problem still inadequately tackled, whether in the patient’s own home or in the busy general hospital ward. One part of the difficulty was that the constant pain of terminal cancer was not alleviated by earlier teachings to the effect that doses of narcotics should be spaced as widely as possible to avoid the onset of dependence. Fears about dependence also limited the availability of morphine and diamorphine in some countries, and double-blind trials at St Christopher’s were designed to shed light on the relative merits of the two drugs. Another problem was that of titration, the careful grading of the dose to achieve the desired effect, that was largely seen as a subjective process, although by 1976 it was possible to refer to the use of radio-immunoassay as a method for measuring the level of drugs in the body, thus allowing Twycross’s research to show that the use of opiates with terminally ill patients does not escalate continually, and might even decline115.
The liberal use of pain medication could alarm doctors who had been socialised into using morphine with extreme caution. Since the early twentieth century, greater regulation of the use of opiates in several countries meant that patients could find it difficult to get adequate pain relief. Both doctors and patients were concerned about the possibility of addiction to strong drugs. Reinforcing this perspective, the endurance of pain without resort to powerful narcotics was portrayed as a test of moral fortitude and, in the case of cancer, an inevitable aspect of advanced malignancy. Prior to the 1970s, cancer pain had generally received little international attention as either a clinical or a public health problem, and it was often regarded as an intractable, not fully controllable, consequence of the disease. Since then, John Bonica had been driving the development of the International Association for the Study of Pain (I.A.S.P.). He had gathered together an international group in 1973, in Issaquah, Washington, near his base in Seattle. Buoyed with enthusiasm, it held its first World Congress in Florence in 1975 and the first issue of the journal Pain was published that same year. Pain specialists Dr Kathleen Foley from the United States and Dr Vittorio Ventafridda from Italy organised a follow-up meeting specifically on cancer pain immediately after the Congress in Florence, and this was attended by 150 people. Research presented at this and subsequent meetings suggested physicians had the means to relieve even severe cancer pain and that the principal factors contributing to poor pain (p.228) management were legal barriers against opioid use and a lack of knowledge in pain management on the part of clinicians. Soon the National Cancer Institute in the United States was supporting work on the epidemiology of cancer pain in a collaborative study involving five centres. Following the close links that Twycross and Cicely had developed with these groups, St Christopher’s also became involved in the programme. Some of the participants went on to contribute to the first International Symposium on Cancer Pain.
Held between 24 and 27 May 1978 on one of the Venetian islands, the meeting became a landmark event in the history of the field and resulted in a hefty volume, edited by Ventafridda and Bonica. Famously, it was the site of a stand-off between Twycross and Ray Houde of Memorial Sloan Kettering in New York. They clashed on three key issues: the question of ‘tolerance’ to opiates, the rule of giving analgesia ‘by the clock’, and the benefits of parenteral versus oral administration of morphine. Perhaps urged on by Cicely’s presence at the meeting, and eager to get across the British hospice perspective, Twycross argued there was little evidence of tolerance, advocated for careful titration of the drug, and pressed forcibly for a rigid approach to regular giving. Despite the controversies, both Cicely and Twycross were asked to write chapters for one of the volumes reporting the proceedings116. Cicely took the unusual step of using patients’ paintings and drawings, case histories, and research in combination to develop her argument. One individual series of pictures was particularly telling. It showed the feeling of being impaled by a red hot iron, of total isolation from the world, of the implacable heaviness of pain or, in one case, the feeling that ‘I am a scrap heap’. Another woman who had experienced a year of relentless pain from carcinoma of the pancreas drew it as a small rodent eating into the side of a tree trunk. The few traces of green at the top were described as ‘my life trying to get through’. By attention to all aspects of such pain, the possibility of its relief came in sight. So, rather unusually, Cicely was able to state, ‘Vital signs in a ward specializing in the control of terminal pain include the hand steady enough to draw, the mind alert enough to write poems and to play cards, and, above all, the spirit to enjoy family visits and spend the last weekends at home’. This was revolutionary and almost an ironic take on the ‘vital signs’ normally observed in hospital wards at that time — temperature, heart rate, respiratory rate, and blood pressure. She went on to argue that good care using this approach could also be delivered in a variety of settings and was not dependent upon the availability of an inpatient hospice facility.
At the beginning of the 1980s, another substantial chapter on pain management at the end of life appeared from Cicely’s pen (she seems hardly ever to have used a typewriter and never a computer), this time in Mark Swerdlow’s collection The Therapy of Pain117. There she cited examples from published studies conducted between 1954 and 1978 which gave evidence of unrelieved terminal pain. By contrast, data on a series of 3,362 patients cared for by St (p.229) Christopher’s between 1972 and 1977 — significantly exceeding the numbers she had so impressively generated at St Joseph’s — showed that only one per cent had continuing pain, though more than three quarters presented to the hospice with such problems. The achievement of these results, however, could occasion the phenomenon of ‘staff pain’, resulting from prolonged exposure to the suffering of patients and families facing death. Although the need for formal staff support was acknowledged and described, it was argued that ‘the resilience of those who continue to work in this field is won by a full understanding of what is happening and not by a retreat behind a technique’. The same chapter made the important point for those countries in which diamorphine was unavailable, that morphine was now the preferred analgesic of the two. The issue of morphine versus diamorphine had been significant. If the Americans in particular were anxious about morphine, most of the world, it seemed, was more concerned about diamorphine — heroin.
So important was the issue in Cicely’s mind that she had a grant lined up to compare the two even before St Christopher’s opened. There had been close discussions about it with Sir George Godber, the government’s chief medical officer, beginning in 1964, and Gillian Ford had also intervened to help. The work was initiated in 1969 by Ron Welldon, St Christopher’s Sir Halley Stewart Clinical Research Fellow, who in due course identified the equivalent dose of the two drugs. Then, one year later, in November 1970, he died suddenly and the work came to a halt. As we shall see later, in a place where death was all around, his passing was particularly hard to endure. But in due course, Twycross came in and completed the study118. It was terribly important work. Cicely had become enthusiastic about the properties of diamorphine whilst working at St Joseph’s, but she knew it was essential to test this out, not least with a drug that was not available in most parts of the world and was also heavily demonized as the preference of addicts and misfits. Much later she expressed some pride in what had been done:
If you’re going to be proved to be wrong, which I was, because there was no clinical observably difference between the two drugs, it’s very nice if you set the study up in the first place, which I must say I’ve said an awful lot of times, I’m afraid, in a rather boastful way. We could say to the rest of the world, ‘we haven’t got a magic drug that you haven’t got’ and ‘it’s not the drug that you use it’s the way that you use it’. And that was a completely new look in the pain research field as far as I know119.
Social Work at the Hospice
Given Cicely’s history as an almoner, it is surprising that social work did not figure prominently in the St Christopher’s team from the outset. It is perhaps (p.230) a marker of how far she had become absorbed in the medical and nursing dimensions and their linkage to aspects of spiritual care and personhood that she could appear to overlook the important skills and family casework knowledge which she had learned as an almoner. Eventually, more than a decade after opening, a social work position was advertised, albeit at a rather junior level. Characteristically, it was filled in an unconventional manner. Elizabeth Earnshaw Smith had read Social Science as a mature student at Edinburgh University and then gone on to a career in social work. She worked in hospitals in Edinburgh and London, rising to a senior position at St Charles’s, Notting Hill, where she saw how abject poverty and social disadvantage were inter-twined with health, illness, and the role of social and medical services. Ten years away from retirement, she felt she was getting too far from the coalface of clinical practice. In late 1979, she saw that St Christopher’s was looking to make its first social work appointment. She had followed the progress of the hospice with interest, having first heard Cicely speak in Edinburgh. She had also been in the habit of sending social work trainees to Sydenham for a day of orientation, but was disappointed that they were always looked after by nurses. She sensed a possibility and so contacted Cicely and Helen Willans, and made an arrangement to see them one Sunday. She explained she was interested in hospice social work, but the position as advertised was too junior and didn’t make sense when there was so much leadership, teaching, and policy to develop in relation to the role of social workers with the care of the dying. St Christopher’s, she felt, should be taking a key role in this for the whole of London. Cicely listened with interest. She was used to this approach to hiring staff and, soon afterwards, took the case to the St Christopher’s Council, which agreed to the appointment of Earnshaw Smith at the same level as her existing post. She took up her new role at the hospice in January 1980120. Within a few months, this extremely experienced social worker was asking challenging questions — about the triumvirate of Cicely, Willans, and West which ran the hospice but seemed remote from the rest of the staff, and about why social work and physiotherapy seemed to be appendages to the core professions. Most significantly, she began to bring a reverse logic to the care of the hospice patients, asking the staff to focus on the strengths of their patients and those of their family members, encouraging them to use these and to build a sense of capacity rather than of deficit in their orientation. They used family trees to help visualise this, and learned more about the importance of previous illness, losses, deaths, and bereavements, and how these affected the current situation. Encouraged by Cicely’s emphasis on the importance of ‘endings’, they also looked more closely at the immediate circumstances of death, its continuing importance for those left behind, and the need to consider this in any bereavement care that followed. St Christopher’s was now strengthening its approach to this type of work and moving well beyond the model Cicely had first seen demonstrated at St Joseph’s.
In June 1980, St Christopher’s held a special conference involving participants from seventeen countries. The idea had come from Dorothy Summers, Co-ordinator of Studies at St Christopher’s. She wanted to demonstrate that the hospice, that had ‘taught Bal Mount all he knew’, could also, like him, put on a successful international meeting. They took the theme of a Bar Mitzvah as an explicit salute to David Tasma, the Jewish ‘first patient’ and also an acknowledgement of how the hospice had now ‘come of age’. Cicely hand-picked the speakers from her extensive international address book. There were three days of sessions and then another day spent visiting some of the hospices in southern England that had opened in the time since St Christopher’s got going, as well as St Joseph’s. The last day was a huge celebration of the collective hospice endeavour.
The contents of the event were captured in a subsequent edited collection121. Its eight chapters were written by no less than twenty-eight contributors, from the United Kingdom, Canada, the United States, South Africa, Australia, Holland, and India. The contributions included extensive discussion of hospice philosophy and practice, but also some critical self-reflection on the state of the Hospice Movement worldwide. Cicely noted in the preface:
It was obvious that the conference believed that their work should be integrated with general medical practice, forming a complementary local resource and service. They recognised that much excellent ‘hospice care’ was carried out without use of the title and that the greatest impact of the movement was already being seen in the way that people were being cared for in conventional settings.
The section on hospice philosophy made explicit reference to David Tasma as ‘St Christopher’s founding patient’ and contained one of the first detailed accounts of his legacy — in particular, his ‘window in your home’. This was followed by Cicely’s later much mis-quoted comment: ‘We moved out of the National Health Service with a great deal of its interest and support, in order to build round that window. We moved out so that attitudes and knowledge could move back in . . . .’ The Hospice Movement therefore continued to be concerned both with the sophisticated science of treatments and with the art of caring, bringing competence alongside compassion. This, in turn, raised other dichotomies, such as balancing the needs of the individual with those of society as a whole, and the creative tension between the assurance of faith and the flexibility of tolerance.
Cicely and St Christopher’s were also stimulating other developments, some of them close to home. Thelma Bates was a consultant radiotherapist who had re-trained at St Thomas’s after years of clinical experience in Britain and New Zealand122. She visited and took an interest in St Christopher’s (p.232) soon after its opening. Then, in 1974, Cicely suggested that Mary Baines should spend a week at St Thomas’s to see how a radiotherapy department worked. Baines came away much impressed by the value of radiotherapy and the benefits, in some cases, of just a single dose for pain and symptom relief. Bates was duly invited back to Sydenham on an occasional basis to see patients, and she began referring some for radiotherapy or chemotherapy. The two parties were learning from each other in ways which might have seemed surprising. This was a big step forward from patients ‘growing fat’ in their beds, that Cicely had seen at St Joseph’s and that she was clearly so keen to move beyond. It was another example of the way the ‘palliative-care’ approach was building on the hospice model and taking it in new directions. When Bates learned from Cicely that a team had been established to bring hospice principles into St Luke’s Hospital, New York, her interest was further stimulated. The work had been spearheaded by the hospital chaplain, Carleton Sweetser, who had spent time at St Christopher’s and had been able to mobilize his colleagues to look at ways to foster hospice skills across the hospital, rather than to designate specialist beds for terminal care. The idea was refreshing and new. Bates went to New York to see how it worked, then came back to London and began devising a plan. When the first hospital support team in palliative care got going at St Thomas’s in 1976, Bates had been able to secure the involvement of nurse Barbara Saunders and doctor Andrew Hoy — both trained and highly experienced from their years at St Christopher’s. The concept was also spreading in New York, and a working group to plan a similar team was now underway at the prestigious Memorial Sloan-Kettering Cancer Center123.
By 1980, in her early sixties and recently married, Cicely was entering, albeit unknowingly, into her final five years as medical director. She was enjoying a period of significant personal and professional fulfilment. It was a moment to feel more expansive, to think freely, and to try out new ventures. In this spirit she started to bring together a small collection of writings in a volume called Beyond All Pain, that was published by S.P.C.K. in 1983124. It was the product of her diligent daily reading over several years. The compact book of eighty-eight pages comprised a personal selection of poems, prayers, and other writings which Cicely had found helpful both in her work and in her own personal encounters with illness, loss, and sorrow. It was offered to those who face death and suffering, and also those who care for them. The writings were grouped under five headings: the search for meaning, anger, suffering, dying, and resurrection. There were contributions from the work of writers of diverse orientation and character, including the founder of logo-therapy and concentration camp survivor Viktor Frankl, theologian Teilhard de Chardin, and novelist D.H. Lawrence. Also present were some poems by patients cared for at St Christopher’s. Although the publisher reduced the emphasis on (p.233) bereavement which she had wanted for the book, taking out three sections in the process, Cicely was pleased with her ‘little volume’ and sent it enthusiastically to many friends and colleagues. It was, at one level, a personal indulgence, but at another it was a symbol of her breadth of spirit, depth of vision, and awareness that these ideas needed a wider public. In due course, she would revise and further extend the collection.
A Global Influence
Between 1967 and 1985, Cicely produced, individually and with others, around eighty-five publications, appearing in several languages and in numerous countries125. She wrote for clinical journals and prestigious textbooks, for religious publications, and for the wider public. Three clinical and organisationally oriented books on hospice and palliative care appeared, one of them was soon produced in a second edition and another was translated into French. Her work appeared in the proceedings of symposia and conferences, it was described in magazines and newspapers, and it became the subject of documentary films. Links with overseas colleagues produced a growing cross-fertilisation of ideas.
Early Origins and Contemporary Scene
During this period there began to be a degree of reflection on the state of the phenomenon which was developing around hospices and related activity. Perhaps the first published work to use the term ‘Hospice Movement’ is the revised 1980 second edition of Richard Lamerton’s book on the care of the dying, that devoted an entire chapter to the subject126. Cicely also became interested in the early origins of homes and hospices for the dying. In preparing the hospice’s annual report for 1972, she wrote to Grace Goldin127, asking her for more insight into this. Goldin’s entry on ‘British hospices’ in Encyclopaedia Britannica defined ‘hospice’ as ‘[t]he name frequently given to the guest houses established for the reception of pilgrims and travellers within the precincts or upon the property of religious houses’128. Cicely was intrigued by this welcome to weary travellers who might thus have found a way to paradise by dying whilst en route to their pilgrimage destination. By 1983 she had learned of the work of the Dames du Calvaire, established by Jeanne Garnier in Lyon in 1842 to create homes for the dying in France, and had to acknowledge to a French Sister: ‘You were the first of all of us I think. I am sorry it has taken me so long to find out’129. She saw the value of the historical associations of hospice, but was also challenged to link this to the modern context in which the new hospices were beginning to make a mark. It was a theme she would enjoy returning to in later life.
(p.234) Building on her experience of people with M.N.D., Cicely had increasing evidence that hospice could be developed in many modes and settings — extending beyond initial successes with cancer patients — to include those with non-malignant conditions. In due course, the challenge of caring for people with A.I.D.S. would arise and, by the spring of 1985, this was being discussed at the hospice and with the Royal College of Nursing and the Department of Health and Social Security — if only in language which stressed the importance of infection control and the safety of members of staff130. Above all, a major purpose came to be seen as the improvement of care for the terminally ill within the mainstream setting, not through the continuing proliferation of hospice units, but rather through education and training and the broader diffusion of appropriate knowledge, skills, and attitudes.
Of course, St Christopher’s had a vital role to play in this. Initially it was the only centre for specialised education and training in the new field of terminal care. As early as 1969, Cicely had written to Sue Ryder, her fellow charitable founder and innovator, commenting on a successful training visit from a Polish doctor of their mutual acquaintance and noting: ‘[H]e has made us realise how blessed we are in the amount of space, equipment and so on we have here; one should not be ashamed of one’s blessings but only continue to give thanks and try to use them with proper responsibility’131. But building on such successes, there was soon a tidal wave of requests from around the world to visit, to work, and to spend time at the hospice. Initially these were encouraged, even fostered (she was keen for American colleagues like Avery Weisman and Elisabeth Kübler-Ross to visit, even when they did not find time in their schedules to do so). But she could be extremely snippy with others who sought to impose themselves when it did not suit. One American would-be visitor got a particular lashing: ‘I think only a psychologist without clinical responsibility could ask a medical director to take him round a hospital over Christmas. I am sorry to sound so unwelcoming but have you any idea how many things one has to do at this time and how many staff have to sort out their own Christmas with their families and the work with patients?’132 By 1975, there were two thousand visitors per annum; special hours were set aside for them each week, and in due course, some tours were conducted in French. This was one way of dealing with the flood of interest, but Cicely was not well disposed to those who made extravagant journeys to St Christopher’s at the expense of over-looking growing expertise nearer to home133, and she also complained to Elisabeth Kübler-Ross about the constant requests for information from the United States that were not matched by any willingness to meet the postage or printing costs134. She seemed inconsistent in these areas — very willing to solicit visitors when they suited her purpose, but at times churlish (though in letters she at times protested the contrary) to some who wrote seeking advice or entrée to the special environment she had created at Sydenham.
There were also many who asked Cicely to come to them. In these years as medical director, she visited North America around a dozen times, developing and extending her close professional links as well as her enduring friendships. Often the two combined, as with Balfour Mount and the palliative-care service at the Royal Victoria Hospital, Montreal, and at the international conference he hosted every two years starting in 1976. Theirs was an extended and close relationship. Enthused by what he had seen at St Christopher’s, Mount now had his own palliative-care unit in Montreal. He also fostered a controversial study in which a medical anthropologist starved himself to gain entry to the hospital wards and the palliative-care unit to contrast and compare covertly the care he received in the two settings135. Despite these, at times, maverick approaches, Cicely gave much encouragement to Mount’s work, speaking at the first meeting and staying with the Mounts at their home. She found him to be an excellent clinician, rather fanciful in his ideas, and sometimes prone to temper tantrums with hospital administrators when he didn’t get his way. She admired Bal Mount hugely (Figure 5.4), knew him through a divorce and remarriage, and considered his work to have an excellent philosophical base136. Over the years, they maintained an enormous correspondence, full of newsy items, family updates, abstract and spiritual reflections, as well as gossip and chitchat. Undoubtedly, he was one of her favourite visitors to her office, though most were graciously welcomed (Figure 5.5).
Cicely also made visits to many other countries, including Yugoslavia, Belgium, Australia, Israel, and South Africa. Her network of collaborators expanded, and her influence and reputation grew as she was acknowledged increasingly as the ‘founder’ of the modern Hospice Movement. She took an extremely close interest in the many services and settings to which she was introduced on these trips and would often comment on them in great detail in later correspondence. By 1977, and after several visits to the United States, she had discovered the pleasures of first-class air travel and asked that this be provided when she made a visit to Western Australia: ‘I am six feet tall and getting arthritis in my knees and last winter had a crush fracture of my spine. I think I am not fussing when I say that a trip of these dimensions has got to be done in this way’137. Her time there, in September, included a rigorous schedule of visits to clinical centres, public meetings, and showcase lectures, as well as a few ‘wildflowers, birds, etc.’138. Australia was immediately followed by a holiday in Israel (the first of three visits there) with Tom West and Marian, but of course there were also meetings with hospice enthusiasts, contacts to be made, and advice to be given139. In the summer of 1978, she returned to Poland and, through meetings in Warsaw, Gdansk, and Cracow, was astonished at the progress which had been made since her previous visit in 1962. If she still found it hard to see how a hospice like St Christopher’s could be created there, given (p.237) the demands of the acute medical system, nevertheless, improvement in pain control was a goal worth pursuing140. She noted to Halina Iwanowska, the hospice activist in Gdansk:
The more I talk with people in Poland, the more I realize the situation is just the same as we found in Italy — that people have no idea at all about the effectiveness of that kind of pain control. Consequently one hears a lot of demanding techniques which will only be done by a few and only reach a few whereas I am quite sure those patients we saw together with unrelieved pain could be helped without any extra use of people or time141.
She visited South Africa in 1979 and continued to encourage clinicians there like Dr Henrik Venter and Dr Richard Scheffer. In 1982, she was invited to lay the foundation stone for the first hospice in India, but was unable to attend, though she stayed in regular contact with its founder, Dr L.J. de Souza.
It is apparent that Cicely did not see her vision as something which could only be bounded by the discipline of medicine. The concept of ‘total pain’ took into account physical, emotional, psychological, social, and spiritual elements, and required to be addressed through the combined skills of a multi-disciplinary team of carers, including volunteers, with active attention to family involvement. It also became clear that the resulting possibility of ‘staff pain’ must likewise be attended to. In establishing a foundation outside the parameters of the British National Health Service in the form of an independent, charitable hospice, Cicely also displayed a degree of scepticism about the ability of the mainstream healthcare system to foster her ambitions. For Cicely, moving out of the National Health Service to let new influences flow back, had meant establishing an inpatient hospice and then a home-care service that had become a centre for the development of three activities: clinical care, teaching, and research. In Britain, others began to follow along similar lines, though few combined these three elements at the same level. Hospices modelled substantially upon St Christopher’s — as independent charitable institutions — opened in Sheffield, Manchester (she was there for the opening of St Anne’s Hospice in June 1971), Worthing, and elsewhere. There was a constant flow of communication between the staff of St Christopher’s and others across the United Kingdom who shared similar aspirations, and a great deal of emphasis on the active relationship between hospices and their local communities. As the work developed, it took on the character of a reformist social movement, challenging prevailing attitudes, practices, and modes of organisation. Nevertheless, quite early Cicely could be stern in cautioning those who sought to embark on such a path. For example, in May 1970, she wrote to a would-be hospice founder in Woking, Surrey, stating rather bluntly:
I think in the first place you must realise that it is going to involve much more work and much more expense than one can possibly envisage at the moment. (p.238) I feel strongly myself that a project like this should not be embarked upon unless one literally cannot help it because the compulsion that it is the right thing is so strong142.
She also commented with concern on the failure to adopt more modern approaches to terminal care at the long-established Hostel of God, in Clapham. One of the first of the nineteenth-century hospices, with encouragement from Cicely it was eventually able to make the transition into the new era of hospice and palliative care, but not before she had laid down some strong concerns in 1975 to the Bishop of Southwark about its mode of organisation and working: ‘The Sisters have not had the support of either imaginative doctors or trustees and, although they have done a marvellous job in many ways, it is terribly sad to see the present standards of care’143.
Recognition at Home
The enthusiasm for hospice nevertheless continued to grow and, in time, caught the interests of policymakers who began to take a closer interest in the subject, leading to the first national symposium on the care of the dying, held in London in November 1972, with the proceedings published in the British Medical Journal. It was a level of recognition that could scarcely have been imagined almost exactly a decade earlier, when Cicely had hesitantly presented her paper on the treatment of intractable pain in terminal cancer at the Royal Society of Medicine. In 1972, actor Sheila Hancock gave a lay view on ‘death in the family’ as a counterpoint to Cicely and Professor W. Ferguson Anderson, a Glasgow geriatrician, who gave professional perspectives. One of the many detailed pieces was from Eric Wilkes, characteristically self-effacing and urbane, paying a well-rounded tribute to Cicely: ‘Our small, eccentric unit in Sheffield, with which I am associated, is only a faint shadow of St Christopher’s Hospice, but it does demonstrate the possibility of what can be done without leadership of the quality of Dr Cicely Saunders’144. Cicely’s own contribution began with an account of how patient and family ‘are often separated by unshared knowledge’ and went on to describe how the experience of pain can cut off patients from those around them145. She outlined the known methods for the control of pain using a combination of analgesics, adjuvants, and other methods, including listening to ‘the various facets of distress’. She argued that the inpatient unit can provide a place where families may be reunited, such as in the case of the sons of a dying man who, after admission, ‘met their father again, when at home they had been refusing to speak to him, resentful and uncomfortable with the illness of which they were so frightened’. Cicely explained how it can then become a matter of helping to produce ‘a climate in which the patients can find their own meanings’. This may be a matter of listening without necessarily knowing the answers, whilst at the (p.239) same time persevering with the development of practical skills. Simplicity and simply being there may be all important. Her piece concluded with the phrase so significant to this overall approach and so often quoted afterwards: ‘[Y]ou matter because you are you’. In these ways, she stated, patients can live until they die, and the relatives may go on living afterwards.
Inspired in part by such language, this was the start of an era of emotional planning in hospice and palliative-care services in Britain. Ideas and proposals for new services often came forward at the local level, sometimes despite (rather than because of) the support of local health bureaucrats. Only gradually did formal guidance begin to appear, sometimes hastily cobbled together in the face of a rising tide of local hospice developments led by specially formed charities and local zealots. Hospices were mushrooming, and this brought more and more demands upon St Christopher’s. Some services were also being formed within the National Health Service — for example, in Oxford and Southampton. In 1977, Cicely was called to help in Aberdeen ‘where they have a Continuing Care Unit opening with little public relations done with the doctors beforehand and a great need of an open meeting’146. The year before, she had set up a ‘think tank’ of hospice doctors and some clinicians from elsewhere, such as Kenneth Calman, who was undertaking a Medical Research Council clinical fellowship at the Royal Marsden Hospital. They met at St Christopher’s every few months to share questions and clinical problems, stimulating development in the emerging field of hospice medicine and preparing the ground for later recognition as a specialty. In 1979, Cicely was responding to suggestions from Oxford that a special service for children should be established there: ‘On the whole I do not believe in Hospices for children, but I may be wrong’147. She was a landmark of policy recognition came in 1980 with the report of the Working Group on Terminal Care produced by the Standing Sub-Committee on Cancer of the Standing Medical Advisory Committee, chaired by hospice founder and later professor of community medicine Eric Wilkes148.
The ‘Wilkes Report’, as it came to be known, was a response to the significant developments that had taken place since the work two decades earlier of H.L. Glyn Hughes. Notwithstanding his role as a hospice founder within his own locale, Wilkes gave a cold shower to expansionist tendencies among hospices. The report argued that these were neither affordable (in cash) nor sustainable (in personnel). Rather, the focus should be on encouraging the principles of terminal care throughout the health service and with good coordination between the sectors. If prescient in orientation, it did little to stem the immediate tide of enthusiasm for the creation of new hospice organisations. The decade that followed was unprecedented for hospice growth in Britain, with one hundred new hospices coming into existence, each seeking to negotiate some kind of grant or subvention from its local health authority.
(p.240) Within this wider culture of recognition, important developments were taking place internationally. There was increasing acknowledgement that the benefits of hospice and palliative care should not be confined to those in the affluent nations of the world, but that the epidemic of cancer in developing countries also required attention. Gradually, interest in these issues was spreading throughout many societies and cultures.
An International Forum
November 1974 saw the first full meeting of the International Work Group on Death, Dying, and Bereavement, in Columbia, Maryland. It emerged from the activities of Ars Moriendi, a multi-disciplinary association focussed on the professional response to death and loss, and that had been established by John Fryer. Cicely was among the founding group of ‘I.W.G.’, as it became known, and subsequently it was organised into a pattern of bi-annual meetings around the world, seeking to be catalytic, sharing knowledge and experience, and working in a collegial manner, albeit in a group whose membership was by invitation only. Colin Murray Parkes, Tom West, and Thelma Bates were other people from within the St Christopher’s sphere who became involved. It had a glittering membership of academic thanatologists and death-oriented clinicians who fostered a particular style of engagement, that, Cicely remembered, could involve frank discussion and often robust language. On one occasion, she returned from a meeting to take part immediately in a prize-giving event for nurses in London. As each recipient came up to the podium, Cicely could not shake out of her head, the repeated exclamation of the I.W.G. discussion: ‘bullshit, bullshit, bullshit’149. It is a mark of her approach that she stayed with I.W.G., only missing meetings as Marian became more dependent, and after his death resuming her interest and travelling long distances to attend. She held an iconic place in the group, and her high-toned contributions, laconic observations, and generally patrician aura were much loved by its members.
If I.W.G. existed in the rarefied atmosphere of closed discussions in luxurious settings, other international organisations were engaging with issues of pain and terminal care in ways which might yield more obvious policy and practice benefit. In 1982, under the leadership of a new chief of cancer, Dr Jan Stjernsward, W.H.O., enlisted the aid of hospice-care leaders and cancer pain specialists, plus pharmaceutical manufacturers to develop a global Programme for Cancer Pain Relief. It would be based on a three-step analgesic ‘ladder’, with the use of adjuvant therapies, and incorporating the use of strong opioids as the third step. The key meeting of the group, in which Robert Twycross played a prominent role, was at the Villa d’Este on Lake Como outside Milan in October 1982. The members were becoming very focussed on the global scale of the problem associated with cancer pain, the lack of medical education (p.241) on the subject, the wariness of clinicians in engaging with the use of strong opiates, and the major barriers that existed in laws and established procedures which combined to restrict access to appropriate medication in many parts of the world. On the back of these efforts, W.H.O. representatives launched an international initiative to remove legal sanctions against opioid importation and use, relying on national co-ordinating centres to organize professional education and to disseminate the core principles of the newly formulated ‘pain ladder’ — simple guidelines for pain relief which could be operationalised in many settings. The interest of W.H.O. raised further debate about the relationship between palliative care and oncology. It was increasingly recognised that curative care and palliative care were not mutually exclusive, and that as long as few options for curative oncological treatment existed for many patients in the developing world, the allocation of resources should shift towards a greater emphasis on palliative care. Cancer pain was coming to be defined as a public health issue and, as that occurred, the scope for wider involvement — beyond the immediate world of hospice — was in turn opening up. By the spring of 1986, Cicely was writing to Stjernsward, eagerly awaiting a copy of the W.H.O. technical report150 which would outline this entire programme and eventually lead to — and this was a huge landmark — its own definition of the emerging field of palliative care, published in 1990151. The momentum was growing and formal recognition from the medical establishment now came within the grasp of its founders. Britain would be the first to achieve this, and as we shall see in due course, Gillian Ford, Cicely’s long-established and dear friend, would be in the vanguard of developments.
Honours and Plaudits
During her years as medical director at St Christopher’s, and with increasing frequency, Cicely was showered with an array of honours and prizes. Things got underway with an honorary doctor of science from Yale in 1969. The build-up to and aftermath of the visit were painstaking. Cicely fussed endlessly over protocol on the day; the cap; the gown; the hood; the ‘sub-fusc’; the colour of shoes, stockings, and dress; and the possibility of having the whole academic outfit made in London for subsequent use152. It was a momentous occasion for Cicely, in which she took the view that every single patient she had ever looked after was present with her153.
During the mid 1970s, Cicely had got into dialogue with television presenter and transatlantic celebrity David Frost. It resulted in a thirty-minute ‘Frost Interview’ with Cicely, broadcast by the B.B.C. on 19 September 1974. He took a keen interest, visited the hospice, and on the programme spoke to some (p.242) of the patients from St Christopher’s. Cicely was pleased with the result and saw it as a buffer against other programmes, and the wider debate on euthanasia that was building up at the time. In the months that followed, as assiduous as ever, she provided him with updates on some of the patients and families he had met and tried to tempt him (without result) into other collaborations154.
Following the success of the Frost Interview, the B.B.C. took further interest and the idea that Cicely might feature on the television programme In the Light of Experience was first discussed in 1976. She explored it with producer Angela Tilby of the B.B.C.’s Religious Department and, despite initial worries, became more relaxed about the possibility. The programme was broadly in the ‘religious affairs’ category and focussed on the life and work of a particular individual. Lasting a full half hour, it was again a serious opportunity for Cicely to explain herself and to draw wider attention to her hospice ideals. She decided to use it as the moment to become more public about Antoni Michniewicz, their relationship, and the importance of it all for the development of St Christopher’s. Quite why she chose this time was never explained. It was a busy period of consolidation and development. The work of St Christopher’s was becoming more widely known and its status as a hub of expertise was now established. She could feel more confident in her achievements. It was a year in which she published almost a dozen items. Perhaps most significant was that these included her re-workings of the Nursing Times articles. In doing that, she had been taken back to 1959, the year of their first publication, but also the period just before she had known Antoni, who had been admitted to St Joseph’s in January 1960 and died there in August. Sixteen years later to the very month, her ‘sub-conscious quietly got to work’ and she wrote a draft script for the programme over a weekend. Sending it to Tilby, even if it were not to be used for some time, she explained: ‘I think I have needed to get it off my chest for quite a long time . . . . This is the first time I feel I have told the story of how St Christopher’s began truthfully’155. The idea stayed with her for the next few years. On the night of 16 – 17 August 1979, again coinciding with the anniversary of his death, she dreamed again about Antoni. He was in Rugby Ward at the hospice, but alive and well following the intervention of ‘a healer’156. There would be no further dreams of him until after Marian had died, but before that the programme was broadcast — on 20 August 1980, marking the twentieth anniversary of Antoni’s death. Her most compelling story was now in the public domain and would become synonymous with the maturing narrative of her life, loves, and work. But it was not laid to rest. She would revisit the story in earnest almost twenty years later.
Beginning in the late 1970s, some major award was conferred upon Cicely every year; sometimes there were several close together. In 1977 she received (p.243) the Lambeth Doctorate of Medicine from the Archbishop of Canterbury; in 1979 she became the first woman to receive a Gold Medal in Therapeutics from the Worshipful Society of Apothecaries. There were also honorary degrees from the Open University in Britain as well as from Columbia University and Iona College in the United States. In 1981 she was made a Fellow of the Royal College of Nursing, to add to her fellowship from the Royal College of Physicians of 1974.
Then, in 1980, the Queen’s New Year Honours list again contained Cicely’s name. She had been made a Dame and was clearly delighted in all that it conferred. She regarded the honour as a salute to the whole of the Hospice Movement and constantly reaffirmed that belief in all of the wider recognition she received. By the end of January she had replied in acknowledgement to more than five hundred well-wishers who had written, sending their felicitations. She explained to her American friends that this was something like being knighted and that, although she had not yet been to Buckingham Palace to be invested, the title should be used from now on. Friends could go on calling her Cicely, but ‘acquaintances and enemies’ should use ‘Dame Cicely’ and most certainly not ‘Dame Saunders’157. Despite this, Americans continued to use the latter for the rest of her life when referring to or meeting her, perhaps to her amusement if not slight irritation.
The following year saw her awarded the Templeton Prize for Progress in Religion. It was enormously prestigious and marked her out not only as a great clinician and service innovator, but also as one who had made a contribution to understanding the importance of religion to individual life and to society. Its founder had established the prize in 1972 to honour living persons who could be described as ‘entrepreneurs of the spirit’. For Cicely, it was recognition not only of her faith, but also of her works and the practical ethic that linked the two together. It also brought a handsome financial contribution, and this was put towards a new day centre at St Christopher’s. As she noted to a colleague in Poland: ‘We find ourselves increasingly involved with the elderly and lonely bereaved in our community and there are people with chronic diseases other than cancer near to the hospice who would, I think, benefit from attending any such centre with our patients’158. At the public ceremony in London’s Guildhall on 12 May 1981, and in the presence of H.R.H., Princess Alexandra, Patron of St Christopher’s, Cicely was described as ‘the woman who has changed the face of death’. In her own address, she took time to review her personal history of involvement in the field as well as the evolution of places called ‘hospices’ over the centuries. She also provided a striking definition of the modern hospice:
[It is] a skilled community working to improve the quality of life remaining for patients and their families struggling with mortal and long-term illness. Some also include the frail elderly. Hospice is about a special kind of living (p.244) and in a sense is still concerned with travelling; patients, families, elderly residents and the staff and volunteers who meet them, all find they are drawn into a journey of the spirit159.
From 1981 to 1984 there were no less than nine more honorary degrees from prestigious universities in Britain and America. Academia was saluting her achievements, and Cicely, who had never held a substantive post in a university and who had not completed her M.D. thesis, relished the recognition.
Meeting Her Biographer
The initial conversations at the B.B.C. had drawn Cicely to the attention of Shirley du Boulay, who had worked on the highly successful ‘Woman’s Hour’ radio programme and then moved into television before leaving Broadcasting House to work as a freelance writer, and in time became an accomplished biographer. The two worked together on In the Light of Experience and also a televised panel discussion. When the time came, du Boulay saw in Cicely a complex and challenging subject for her first book and began discussions with her about it in the summer of 1981. By August it was agreed, and Cicely gave her biographer leave to look at all the available material. She was relieved that the book she had been thinking of writing about her own story, and which had sat in the back of her mind for so long, would not have to be attempted. du Boulay was encouraged to speak with Cicely’s closest colleagues and friends, and the follow-up international conference to the Bar Mitzvah in 1982 was a good opportunity for this. By March 1983, Cicely was reading drafts of the early chapters. She liked the material and could see that du Boulay would help strike a blow for ‘all the right things about hospice’160. Once again the opportunist, she also persuaded du Boulay to include a whole chapter of extracts from the diary of a St Christopher’s patient, Ramsey, who was at the hospice between 20 June and 8 September 1978, when he died at age forty-eight. Arguably, it badly interrupted the flow, as the book moved back and forth in the later chapters from a narrative of Cicely’s life to an account of the day-to-day workings of the hospice as an organisation. But it was typical of Cicely’s keen-ness, always to seize an opportunity to advance some argument or point of view. When the pre-publication copy arrived in January 1984161, Cicely wrote to the publisher, praising du Boulay ‘with the feeling that she knows me better than I know myself, but glad that this part of the story of St Christopher’s has been so sympathetically told’162. At age sixty-four, she could feel content to be one of perhaps just a few female doctors to see a biography published in their own lifetime. Widely reviewed, it celebrated her contribution; but, more important to Cicely, it was a lucid, insightful, and robust account of her work and that of the hospice she had founded. An early review in The Lancet from Derek Doyle of St Columba’s Hospice in Edinburgh, was (p.245) upbeat. He began by questioning the motives of someone who would allow a biography to be written whilst ‘very much still alive’. He was reassured that this was born of a ‘quiet assurance allied to courage’. For him the book did not contribute to ‘canonisation in her lifetime’, that he nonetheless felt was taking place in some settings. Rather, he found in it both a candid account of her life and character along with the best description yet of the philosophy and practice of hospice: ‘She is revealed as intensely human, often uncomfortable to work with, at times intolerant and unable to suffer fools, sometimes insecure and sharp of tongue, but always fascinating and inspiring, to the point of being electrifying’163.
All in all, by the 1980s, Cicely was enjoying a period of significant professional and personal fulfilment. As the plaudits accumulated, she could be modest about her achievements, as she opined in a letter to Grace Goldin:
[T]here are not many original ideas in the world. One only brings together things culled from here and there, shakes the kaleidoscope and finds a new pattern. That I have said often enough and it is really my feeling about the originality or lack of it of St Christopher’s164.
It was a reasonable, if under-stated, description. Likewise, on another occasion, she reflected: ‘Periodically as I look at this building I am astonished at the effrontery of thinking we could build such a place around the window’165. But others thought differently and wished to see Cicely honoured and recognised for her achievements. There was no doubt she took pride in this, and it perhaps fuelled her vanity, but always she deflected the praise and turned it, in the end, onto the achievements of the whole world of hospice and everyone who contributed to it.
Challenges — Personal and Professional
The professional and clinical achievements of Cicely’s years as medical director cannot be allowed to mask the organisational issues and difficulties which also had to be overcome, as well as the personal obstacles and dilemmas which had to be faced throughout these many and varied years.
In the summer of 1968, with the hospice open for just a year, Cicely reached her fiftieth birthday. She would do some reflection on what had been achieved, and was able to go over things with Florence Wald, who came for a working visit. But soon her health was giving her problems. She took medication for fibroids and tried to battle on. Then, in August 1969, the hospice staff ‘put down their collective feet’ and she accepted that she would have to go into hospital for an hysterectomy166. An early casualty was a planned visit to the United States in October. She explained to her chairman, Lord Thurlow, that it was nothing serious, but she would be off for two months, a locum would be brought in, and she would convalesce at St Christopher’s rather than ‘in (p.246) a flat on my own’167. As we have seen, it was in late 1969 that the ‘kibbutz’ was established in Lawrie Park Gardens. So this combination of new living arrangements and recovery from surgery must have been demanding for Cicely, both emotionally and physically. In any event, the period of absence was much longer than expected and she did not get back to work at the hospice until 23 March 1970. To compound the problem, her back then started to give her trouble and in June she told Marty Herrman: ‘I am not exactly blooming as I am, at the moment, supported by a most uncomfortable surgical corset!’168 Cicely’s health continued to trouble her at various times. She injured her spine in 1977 and had a bad fall on some wet steps in early 1985. But mostly, in the 1980s, it was Marian’s well-being, rather than her own, which took priority.
The Death of Ron Welldon
There were also losses and stresses from time to time that affected the whole of St Christopher’s. A major one was on 9 November 1970, when Dr Ron Welldon, the hospice’s first research fellow, died suddenly, the news reaching Cicely by cable in Lexington, Kentucky, just as she was about to take a ward round and give a lecture. Welldon left a widow, psychiatrist Estela D’Accurzio, and a child of nine months. For a whole year he had been in severe pain from a slipped disc, and four months earlier had undergone a laminectomy. The circumstances of his death seem unclear. Cicely wrote that he had mistakenly taken an overdose of sleeping pills: ‘No doubt at all that it was a mistake’169. But Richard Lamerton, many years afterwards, offered a different account. Welldon was taking large quantities of the newly marketed drug paracetamol to treat his pain, whilst seeking to avoid drowsiness and maintain his work output. In Lamerton’s view, Welldon died of an overdose of a drug which was not known at the time to have hepatoxic properties170. Whichever was the case, it was tragic that a mix-up over drugs should occur in a doctor experiencing chronic pain, and who had extensive knowledge about the use of powerful opiates.
Cicely spoke about Ron Welldon in Lexington on the night of his death. She had two thoughts: ‘death is an outrage’ and ‘death is alright’. She explored his ‘fascinating way of turning things upside down’, how she had found solace herself in being with him, and also of his extraordinary personal qualities as a physician. In the days following, now on holiday, she visited with her friend Sister Zita Marie Cotter, first near Gethsemane, a Trappist Monastery, and then a centre run by the Sisters of Charity of Nazareth. In these places, and without fore-planning, she found herself going into retreat ‘and somehow it all got gathered up’. She had avoided this kind of situation for almost a decade, knowing that her father had died whilst she was at Grandchamp. But now, having been given retreat without volition, ‘all was well’171.
On returning to London, however, she found the hospice in shock. The Rev Ed Dobihall, an associate from Yale who was spending time as a chaplain (p.247) at St Christopher’s, took a memorial service in the chapel with family and colleagues all packed in together and with Welldon’s little son gurgling away throughout172. In the days that followed, Ron was missed dreadfully. On Christmas Eve, Cicely wrote to Elisabeth Kübler-Ross with the news. Cicely also stayed in touch with Welldon’s wife and ensured that his obituary was published in The Lancet173.
No sooner had the obituary appeared, and before 1970 had even come to an end, Cicely was in touch again with Robert Twycross and making active plans for him to come as Ron Welldon’s replacement. Twycross visited the hospice on 22 December and met with Albertine Winner, the chair of trustees, as well as Colin Murray Parkes and Duncan Vere, at the London Hospital. By 29 December, everyone involved was agreed that he should be offered the post. He had no research training, but his reference was excellent and Cicely was convinced of his ‘real concern about terminal care and of his very courteous and considerate personality’174. She, as always, and even in the wake of tragic loss, was the pragmatist and the planner.
Further Losses, Worries, and Criticisms
The following year, the death of Lord Thurlow after a period of illness took away a chairman in whom she had great confidence and who had been such a support to her in the pre-operational years of St Christopher’s. He had joined Cicely at a time when they were struggling for money and he had been willing to sign the contract to proceed with building even though only half the needed sum had been raised. When the hospice opened, he visited whenever he could, chairing meetings, but also getting to know the long-stay residents of the Draper’s Wing as well as the staff and patients. His old dog Tammy was looked after at the hospice when he was away, and as his condition deteriorated, Albertine Winner and Cicely both made sure to visit him175. When his obituary appeared in The Times on 1 June 1971 but contained no mention of St Christopher’s, Cicely was quick to write to the newspaper editor asking for an addition to be made176.
There were more mundane challenges occasioned by relations between the staff and the particular circumstances of those involved. Miss Neville was deputy matron at the beginning, but left in 1973 when the Study Centre opened. The leaving was only partly mutual and left Cicely, who had intervened directly, feeling uneasy. As she later put it, ‘[h]iring is alright; firing’s terrible’177. The arrangements in the hospice could be awkward. If a member of staff didn’t get on well with matron, there were other ramifications. Matron was married to the chief steward. If a colleague had a family member who received care from the hospice, and the medical director was involved, further complications could ensue. In addition, sometimes staff could become over-involved with patients. Cicely was aware of this on the small number of occasions when (p.248) it happened, and knew she was vulnerable, especially as in these years she became much more open about what happened with Antoni, but she took the view that such involvement would only be inappropriate if it stepped out of the boundaries created by St Christopher’s as an organisation and a community. That was the strength of the hospice approach: Teamwork could protect against over-involvement and serve to mitigate potential risks. Looking back in the mid 1990s, Cicely reflected:
[W]e’ve had some casualties along the way. I wouldn’t say we were always terribly good at handling them, but somehow we have kept going, although I think there were one or two hurt people, and [Miss Neville] certainly was, that I’ve felt guilty about and responsible for, and think that, you know, I didn’t really handle that as well as I should have done178.
There were also periodic financial crises, including a major one in 1974. This had been building up steadily in the prior period. The annual accounts of the first three years each showed an operating deficit. The hospice was spending more than it generated and the gap was not being filled by the relatively modest fund-raising efforts that existed at the time. An organisational review undertaken by students at Cranfield School of Management urged more prudence on financial matters and greater devolution of budgetary powers and responsibility179. Other visitors to the hospice, on writing about their experiences, said critical things about staff morale and the management culture, describing it as authoritarian and inflexible, and concerned only for the patients and not for the staff. One such account produced by a visitor in 1974 resulted in a caring but firm reply to its American author:
I made no comments about your report at the time as I did not know what to say. You were here at a particularly difficult time when Marian Newell, Sister Spears, and Nurse Cosser were all going to leave for various reasons, and I know you had problems of homesickness . . . . I am very unhappy about the idealistic image of St Christopher’s which some people produce and perhaps what you say will be a good corrective180.
In particular, though, Cicely objected to the phrase ‘much hostility’ in the report and asked for it to be changed, though she did acknowledge that ‘anger’ was a component of the St Christopher’s culture. Such observations stimulated the creation in 1979 of a Foundation Group to look again at the early statement of Aim and Basis that had been drafted by Olive Wyon, but the members could find little reason for any significant re-orientation. Always there were links back to the origins and initial vision. Sometimes these were personally painful, such as the next year when Cicely lost her great stalwart from the early days, Jack Wallace, who died after a minor operation. His confidence in her vision and willingness to play a supplementary role to it had been crucial to the success of the enterprise.
In her years as medical director, Cicely continued to oppose the legalisation of euthanasia whenever the opportunity arose, affirming a position she had first set out in 1959181. In 1972, she challenged a Dutch colleague on the wisdom of promoting what was then being termed ‘active euthanasia’. She described a recent example of a patient in the hospice who had been asking for her life to be ended. Cicely had gone to see her, explained it couldn’t be done, but were such a course of action legal, would the patient like it to be done now?
[T]he instant response was ‘no, not now’.
‘When would you want me to?’ I asked.
‘If the pain got too much or if I got desperately fed up with it all’.
I replied to the effect that we would certainly be able to control pain . . . I said we would certainly help feelings of anxiety and desperation . . . and I told her she could certainly send for me if she wanted to do so. She went on to say that was really what she wanted but added how hard she found it for her husband to see her like this . . . and asked me not to tell her husband.
I said, “[W]ell we have only been talking about pain haven’t we?”
I think that was the truth of the matter . . . . Never when I have asked ‘Do you want it now’ have I been given the answer ‘Yes’182.
She opposed euthanasia on several grounds. As in this example, she thought it was mostly something that could be avoided by good palliative care. She thought it imposed too much pressure on the surviving family, arguing that it was more significant even than the trauma of suicide. She was also at pains to clarify some of the terminology in use at the time — for example, to make it clear that desisting from inappropriate treatment or ceasing to strive for the prolongation of life in the irreversibly dying constituted ‘proper medical care’ and should not be described as ‘euthanasia’. Rarely did she invoke arguments about the sanctity of life, relying instead on the power of her clinical experience to argue against assisted dying. But here she was in a clinical grey area, where evidence was difficult to marshal, and anecdote tended to be the main line of her reasoning: ‘I do not believe in taking a deliberate step to end a patient’s life — but then, I do not get asked’183. As she noted in her preface to a volume prepared by Sylvia Lack and Richard Lamerton, from papers presented in 1973 at a St Christopher’s conference — ‘If a patient asks to be killed, someone has failed him’184.
Between 1970 and 1974, a working party of the Church of England Board for Social Responsibility sought to develop an Anglican contribution to the debate on euthanasia185. The group had seven members, though the first chairman, the Right Reverend Ian Ramsay, then Bishop of Durham, died suddenly in October 1972. Two chapters in the report were drafted by Cicely, who ‘for her sins’ as she put it to A.N. Exton Smith, had been invited to serve (p.250) as a member of the group186. The report recommended that the law on euthanasia should not be changed. All members endorsed the recommendations, including (1) the undesirability of extending the term ‘euthanasia’ to incorporate the withdrawal of artificial means of preserving life or to include the use of pain-relieving drugs that may marginally shorten life; (2) the assertion that if all care of the dying was at the standard of the best, then there would be no prima facie case for euthanasia; and (3) the belief that such standards are more hindered by ignorance than by money and staff shortages.
In 1976, when Cicely came to revise her articles from 1959 which had appeared in Nursing Times, the changes she needed to make to the paper on euthanasia — in light of growing public debate and possible legislative change — were so extensive as to require publication in two tranches over consecutive weeks. The first article187 began with a discussion of euthanasia debates in the House of Lords, from 1936 to the most recent concerning Baroness Wootton’s Incurable Patients Bill (1976). In Cicely’s view, many of the 1976 proposals should already have been available to patients, though she acknowledged that not all patients receive the help they need. The danger of Wooton’s proposal, albeit produced by those with ‘a manifest concern for the relief of suffering’ was that patients deemed ‘incurable’ may feel they not only had the right, but also the duty to choose a quick end. Rather than concentrate on assertion and counter-assertion, the article focused on the argument that people are suffering when they need not. She noted the many therapeutic advances in the seventeen years since the original article was written, and accepted that some added to the problems — particularly when no clear rationale for continuing treatment exists. She took strength from Pope Pius XII’s Allocution of 1957, that states ‘in a case in which death is deemed certain and life can be prolonged only by artificial methods, the physician is not absolutely obliged to prolong life by extraordinary means’. In this context, the emerging notion of ‘Living Wills’ seemed to have some merit and Cicely offered a brief discussion of the debates around ‘furore therapeutics’ and ‘meddlesome medicine’. More positively, she also noted that the intervening years had seen valuable additions to the pharmacopoeia and a sounder knowledge of the use of appropriate drugs — as, for example, in the work pioneered at St Christopher’s. Much more thought and consultation were required on the question of euthanasia. In particular, two additional questions need to be answered: ‘Do patients ask for euthanasia?’ and ‘What would they do and feel if mercy killing became a legal option?’ Cicely found strength in the case of Captain Oates, as described in Scott’s journal of his last expedition to the Antarctic in 1912. Like Oates’s companions, who cared for him throughout and until he left voluntarily to die on the ice, those caring for the dying must convey the sentiment: ‘You matter because you are you. You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live until you die’188. The article of the following week189 argued that frank requests for euthanasia, even among (p.251) those who apparently ‘believe in’ the idea, are still very rare. Sometimes it is a question of disentangling ‘the real question’ from a ‘somewhat confused story’. At times, relatives may question the purpose of continuing to care when the situation is deemed by them to be ‘hopeless’. Cicely took the view that legalising ‘the right to die’, with attendant procedures and safeguards, would likely hinder proper terminal care, that was now developing at scale in many places, and could impose traumatic decisions on both patient and family.
Cicely feared increasingly that the right to die might be interpreted by some as a duty to do so. In 1977 and 1978, she took part in debates at the Royal Society of Health and the Union Society, Cambridge, where in each case motions in support of the legalisation of euthanasia were defeated. She did acknowledge, however, that both sides in the euthanasia debate have a vendetta against pointless pain and impersonal indignity, though their solutions were radically different in character. She was supportive but concerned when the still neophyte I.W.G. organised a meeting in 1977 with the Euthanasia Education Council, writing to John Fryer that, in pressing for the withdrawal of unnecessary treatment at the end of life, the Council might shade into endorsing ‘mercy killing’. ‘If we keep talking together with our definitions clear, there would, I think, be less need to polarise and have the Euthanasia Education Council on a totally different side of the fence from the ordinary Hospice workers’190. Those who opposed new legislation had a responsibility to work towards a situation where no one should be so desperate as to feel the need to request euthanasia191. As she had showed in a 1982 discussion of definitions from active, to palliative, to terminal care, these could be overlapping and even reversible categories, making the appropriate moment for the consideration of euthanasia far less clear. Her clinical reasoning was becoming stronger and more in tune with the competing claims of modern medicine and the conflicting attitudes this could bring in patients who might continue to hope for improvement, even when their disease was advancing. Therefore, ‘[t]o accept a situation when treatment is directed to the relief of symptoms and the alleviation of general distress will no longer mean an implicit “there is nothing more we can do” but an explicit “everything possible is being done” ’192. This, for Cicely lay at the heart of the opposition to euthanasia and would be a position she maintained for the rest of her life, even as the medical landscape continued to change and become more complex.
The year 1985 saw key changes at St Christopher’s. Albertine Winner stood down as chairman and became president of the hospice, succeeding Lord Amulree, who had died the previous year. This enabled Cicely to take over as chairman and Tom West to replace her as medical director. Cicely’s change of role proved to be an unfolding process and was accompanied by much painful (p.252) and personal deliberation. As she explained to John Fryer: ‘There came a time when it was right to go to Albertine and talk to her on the basis of a long discussion which Tom and I had with Sam while he was over, and indeed on the basis of what we have been thinking about over the past months’193. There was much rational talk with Klagsbrun about ‘the changing of the guard’, about her worries concerning Tom West, and about the need to develop a stronger senior management team. There were also less rational, more emotional exchanges about a terrible sense of conflict, of being pushed away, edged out, dismissed, and of losing control194.
Three factors can be discerned in the process of Cicely giving up her role as medical director of the hospice she had founded.
First there was Marian and marriage. Cicely quickly realized and submitted to the fact that Marian’s health was in decline. She could not, however, predict the trajectory which it would take. In the event, it was intermittent and extended. She rightly judged that if she wished to care for him in his last years — however many of these there may be — then she would need seriously to draw back from the many responsibilities which came with her role. She had to start disappointing her admirers around the world and to decline their invitations. Equally, she appeared at times increasingly impatient with the many acolytes who wanted to come to St Christopher’s, to have their photograph taken with its founder, and to take up the time of the staff. Wifely devotion to Marian was an escape from the undesirable elements of her situation, as well as a barrier to continuing with the aspects which gave her pleasure.
Second, in stepping back from the role of senior doctor, she averted the growing possibility that her clinical acumen might be diminishing. Even in the not very rapidly developing field of hospice and palliative medicine, Cicely was in danger of getting out of touch. The syringe driver for continuous infusions of analgesia, the development of slow-release formulations of morphine, and the newer generation of anti-depressants were all areas with which she was less familiar. It would be embarrassing to get something wrong or to have to rely too heavily on others to cover for her. Likewise, when teaching and lecturing farther afield, if her material was less informed by contemporary clinical practice, then embarrassment could result.
Third, there were the growing pressures inside the hospice. Her colleagues could see Cicely was not only slowing down herself, but was also becoming more absorbed with her responsibilities towards Marian. His well-being was a constant preoccupation to her and was affecting day-to-day matters. In particular, Tom West was concerned the place should be run differently.
Tellingly, when West became medical director, Cicely remained in her office, right over the entrance to St Christopher’s, and from which — with an eagle eye — she watched over its comings and goings. Tom moved in next door. She was in the chapel most mornings and continued with her long-standing practice of taking the prayers herself on Mondays. She was regularly (p.253) in the dining room and, after a pre-prandial sherry, took a rather dignified promenade through the building to go to lunch and then return to her office. She did weekend on-call work in the hospice, often subtly backed up by the second doctor who checked carefully on her activities. She took a hand in fund-raising and did a measure of administrative work. There was an unambiguous message that Cicely was still at the helm and must be closely consulted on any matter of significance. She remained a continuing presence on a daily basis and would do so for some years to come. It was clear that she was not retiring.
(1.) Cicely Saunders interview with David Clark, 16 May 2000.
(2.) Clark D. Originating a movement: Cicely Saunders and the development of St Christopher’s Hospice, 1957–67. Mortality. 1998; 3(1): 43–63.
(3.) Cicely Saunders letter to The Rev A.E. Barton, 10 November 1966. Clark D. Cicely Saunders: Founder of the Hospice Movement: Selected Letters 1959–1999. Oxford: Oxford University Press; 2002: 117 (hereafter Letters).
(4.) Cicely Saunders letter to The Right Reverend the Lord Bishop of Stepney, 23 January 1967; Clark, Letters, 119.
(5.) Cicely Saunders letter to Sir George Godber, 16 April 1964; Clark, Letters, 68–69.
(6.) Cicely Saunders interview with David Clark, 16 May 2000.
(7.) Cicely Saunders interview with David Clark, 16 May 2000.
(8.) Cicely Saunders interview with David Clark, 16 May 2000.
(9.) Cicely Saunders letter to Colin Murray Parkes, 14 June 1966; Clark, Letters, 107–108.
(10.) Cicely Saunders interview with David Clark, 16 May 2000.
(11.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(12.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(13.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(14.) Cicely Saunders letter to Sister Zita Marie, 13 August 1964; Clark, Letters, 74–75.
(15.) When the author discussed this version with Cicely on 12 December 2001, she seemed never to have heard of it and was indeed somewhat taken aback by the notion.
(16.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(17.) Cicely Saunders interview with David Clark, 11 May 2004.
(18.) Cicely Saunders interview with David Clark, 11 May 2004.
(19.) Richard Lamerton interview with Michelle Winslow, Hospice History Project, 14 October 2004.
(20.) Lamerton R. Care of the Dying. Hove: Priory Press; 1973.
(21.) Cicely Saunders interview with David Clark, 11 May 2004.
(22.) Cicely Saunders interview with David Clark, 11 May 2004.
(23.) Cicely Saunders letter to Ester Lucille Brown, 27 June 1969; Clark, Letters, 138.
(24.) Cicely Saunders interview with David Clark, 15 December 1999.
(25.) Cicely Saunders letter to Mother Leo Frances, 13 May 1968; Clark, Letters, 134–135.
(26.) Cicely Saunders letter to Florence Wald, 18 June 1968; Clark, Letters, 135.
(27.) Neil Small interview with Florence Wald, Hospice History Project, 29 February 1996.
(28.) See du Boulay S. Cicely Saunders: The Founder of the Modern Hospice Movement, 2nd ed. London: Hodder and Stoughton; 1994: 151–152.
(29.) Baines M. From pioneer days to implementation: Lessons to be learnt. European Journal of Palliative Care. 2011; 18(5): 223–227.
(30.) Barbara McNulty interview with Neil Small, Hospice History Project, 23 January 1996.
(31.) Saunders C. The patient’s response to treatment: A photographic presentation showing patients and their families. In Catastrophic Illness in the Seventies: Critical Issues and Complex Decisions. Proceedings of the Fourth National Symposium, 15–16 October 1970. New York: Cancer Care; 1971: 33–46.
(32.) Saunders C., Winner A. Research into terminal care of cancer patients. In McLachlan G., ed. Portfolio for Health 2: The Developing Programme of the DHSS in Health Services Research. Nuffield Provincial Hospitals Trust. London: Oxford University Press; 1973: 19–25.
(33.) Dorothy Summers interview with Neil Small, Hospice History Project, 13 December1995.
(34.) John Fryer interview with Neil Small, Hospice History Project, 26 February 1996.
(35.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(36.) Tom West interview with Neil Small, Hospice History Project, 28 January 1997.
(37.) Cicely Saunders interview with David Clark, 20 September 2000.
(38.) Tom West interview with Neil Small, Hospice History Project, 28 January 1997.
(39.) Sam Klagsbrun interview with Neil Small, Hospice History Project, 27 February 1996.
(40.) Cicely Saunders interview with David Clark, 20 September 2000.
(41.) Thompson J.D., Goldin G. The Hospital: A Social and Architectural History. New Haven, CT: Yale University Press; 1975.
(42.) Goldin G. A proto hospice at the turn of the century: St Luke’s House, London, from 1893 to 1923. Journal of the History of Medicine and Allied Sciences. 1981; 36(4): 383–415.
(43.) Goldin G. Work of Mercy: A Picture History of Hospitals. Erin, Ontario: The Boston Mills Press; 1994.
(44.) Cicely Saunders interview with David Clark, 25 September 2003.
(45.) Cicely Saunders interview with David Clark, 25 September 2003.
(46.) Cicely Saunders interview with David Clark, 23 August 1999.
(47.) Cicely Saunders interview with David Clark, 16 May 2000.
(48.) Cicely Saunders interview with David Clark, 16 May 2000.
(49.) King’s College London Archives, SAUNDERS, Dame Cicely (1918 – 2005), K/PP149/1/24.
(50.) Cicely Saunders interview with David Clark, 16 May 2000.
(52.) Cicely Saunders interview with David Clark, 2 May 2003.
(53.) Described in Cicely Saunders interview with David Clark, 23 August 1999, and also in a handwritten photocopied text, in possession of the author.
(54.) Gillian Ford, pers. comm., 4 September 2017.
(55.) Cicely Saunders letter to Grace Goldin, 15 February 1980; Clark, Letters, 198.
(56.) Cicely Saunders letter to Dr Arnold Rosin, 21 February 1980; Clark, Letters, 199.
(57.) Cicely Saunders interview with David Clark, 2 May 2003.
(58.) Cicely Saunders letter to Grace Goldin, 25 January 1982; Clark, Letters, 220–221.
(59.) Cicely Saunders letter to Balfour Mount, 22 July 1982; Clark, Letters, 225–226.
(60.) Cicely Saunders letter to Elsa Perkins, 2 September 1982; Clark, Letters, 228.
(61.) Cicely Saunders letter to Grace Goldin, 30 September 1982; Clark, Letters, 229
(62.) Cicely Saunders letter to Grace Goldin, 28 October 1982; Clark, Letters, 230.
(63.) Cicely Saunders letter to Marty Herrman, 10 March 1983; Clark, Letters, 235.
(64.) Cicely Saunders letter to Grace Goldin, 22 December 1983; Clark, Letters, 243–244.
(65.) Cicely Saunders letter to Hilde Berenbrok, 8 June 1983; Clark, Letters, 238.
(66.) Cicely Saunders letter to Carleton Sweetser, 23 June 1981; Clark, Letters, 209.
(67.) Cicely Saunders letter to Grace Goldin, 20 June 1983; Clark, Letters, 238–239.
(68.) Cicely Saunders letter to Grace Goldin, 4 May 1983; Clark, Letters, 248–249.
(69.) Cicely Saunders letter to Professor Eric Wilkes, 25 March 1985; Clark, Letters, 258–259.
(70.) Cicely Saunders letter to Carleton Sweetser, 28 August 1985; Clark, Letters, 262.
(71.) Saunders C. The last stages of life. Recover. 1968; Summer: 26–29.
(72.) Saunders C. A therapeutic community: St Christopher’s Hospice. In Schoenberg B., Carr A.C., Peretz D., Kutscher A.H., eds. Psychosocial Aspects of Terminal Care. New York: Columbia University Press; 1972: 275–289. Italics added by author for emphasis.
(73.) Manning N. The Therapeutic Community Movement: Charisma and Routinization. London: Routledge; 1989.
(74.) Gavey C.J. The Management of the “Hopeless” Case. London: H. K. Lewis; 1952.
(75.) Colin Murray Parkes interview with David Clark, Hospice History Project, 10 January 1996.
(76.) Quoted by Colin Murray Parkes in an interview with David Clark, Hospice History Project, 10 January 1996.
(77.) Saunders C. The Management of Terminal Illness. London: Hospital Medicine Publications Limited; 1967.
(78.) Murray Parkes C.M. Home or hospital? Terminal care as seen by surviving spouses. Journal of the Royal College of General Practitioners. 1978; 28: 29–30.
(79.) Murray Parkes C.M. Terminal care: Evaluation of in-patient service at St Christopher’s Hospice part 1: Views of surviving spouse in effects of the service on the patient. Postgraduate Medical Journal. 1979; 55: 517–522.
(80.) Murray Parkes C.M., Parkes J. ‘Hospice’ versus ‘hospital’ care: Re-evaluation after 10 years as seen by surviving spouses. Postgraduate Medical Journal. 1984; 60: 38–42.
(81.) Murray Parkes C. M. Terminal care: Evaluation of an advisory domiciliary service at St Christopher’s Hospice. Postgraduate Medical Journal. 1980; 56: 685–689.
(82.) Saunders and Winner, Research into terminal care of cancer patients.
(83.) Saunders C. The challenge of terminal care. In Symington T., Carter R., eds. The Scientific Foundations of Oncology. London: Heinemann; 1976: 673–679.
(84.) Balfour Mount interview with Neil Small, Hospice History Project, 16 October 1995.
(85.) Balfour Mount interview with David Clark, Hospice History Project, 14 March 2001.
(86.) Cicely Saunders letter to Robert Twycross, 6 March 1978; Clark, Letters, 178–179.
(87.) Cicely Saunders interview with David Clark, 16 May 2000.
(88.) Saunders C., Walsh T.D., Smith M. Hospice care in Motor Neurone Disease. In Saunders C., Summers D., Teller N., eds. Hospice: The Living Idea. London: Edward Arnold; 1981: 126–147.
(92.) For example: Holden T. Patiently speaking. Nursing Times. 1980; June 12: 1035–1036.
(94.) Lamerton R. Care of the Dying. Harmondsworth: Pelican; 1980.
(95.) Saunders C. Appropriate treatment, appropriate death. In Saunders C., ed. The Management of Terminal Malignant Disease. London: Edward Arnold; 1978: 1–16.
(96.) Saunders C. Current views on pain relief and terminal care. In Swerdlow M., ed. The Therapy of Pain. Lancaster, PA: MTP Press; 1981: 215–241.
(97.) Clark D. Between hope and acceptance: The medicalisation of dying. British Medical Journal. 2002; 324: 905–907.
(98.) Clark D. The rise and demise of the “Brompton Cocktail.” In Meldrum M.L., ed. Opioids and Pain Relief: A Historical Perspective. Vol. 25, Progress in Pain Research and Management. Seattle: IASP Press; 2003: 85–98.
(99.) The Brompton Cocktail. The Lancet. 1979; 313(8128): 1220–1221 [Editorial].
(100.) Vere D. In Reynolds L.A., Tansey E.M., eds. Wellcome Witnesses to Twentieth Century Medicine. Vol. 21, Innovation in Pain Management. London: Wellcome Trust Centre for the History of Medicine at UCL; 2004: 15.
(101.) David Clark interview with Robert Twycross, Hospice History Project, 4 January 1996.
(102.) Twycross R.G. Choice of strong analgesic in terminal cancer: Diamorphine or morphine? Pain. 1977; 3: 93–104.
(103.) Twycross R.G. Value of cocaine in opiate-containing elixirs. British Medical Journal. 1977; 2: 1348 [Letter].
(104.) Twycross R.G. The Brompton Cocktail. In Bonica J.J., Ventafridda V., eds. Advances in Pain Research and Therapy, Vol. 2. New York: Raven Press; 1979: 291–300.
(105.) Overy C., Tansey E.M., eds. Palliative Medicine in the UK c1970–2010. Vol. 45, Wellcome Witnesses to Twentieth Century Medicine. London: Queen Mary, University of London; 2013.
(106.) Saunders C. The moment of truth: Care of the dying person. In Pearson L., ed. Death and Dying: Current Issues in the Treatment of the Dying Person. Cleveland, OH: The Press of Case Western Reserve University; 1969: 49–78.
(107.) Saunders C. Nature and management of terminal pain. In Shotter E.F., ed. Matters of Life and Death. London: Dartman, Longman, and Todd; 1970: 15–26.
(108.) Baines M. Symptom control in the dying patient. In Saunders C., Summers D.H., Teller N., eds. Hospice: The Living Idea. London: Edward Arnold; 1981: 93–101.
(109.) Saunders C. An individual approach to the relief of pain. People and Cancer. London: The British Council; 1970: 34–38.
(110.) Cicely Saunders letter to Dr Austin H. Kutscher, 1 December 1971; Clark, Letters, 151.
(111.) Cicely Saunders letter to The Rev W. Benjamin Holmes, 9 December 1971; Clark, Letters, 151–152.
(112.) Cicely Saunders letter to Elisabeth Kübler-Ross, 22 August 1972; Clark, Letters, 153–154.
(113.) Cicely Saunders letter to Christer Tovesson, 17 May 1978; Clark, Letters, 180.
(114.) Saunders and Winner, Research into terminal care of cancer patients.
(116.) Saunders C. The nature and management of terminal pain and the hospice concept. In Bonica J.J., Ventafridda V., eds. Advances in Pain Research, Vol. 2. New York: Raven Press; 1979: 635–651.
(119.) Cicely Saunders interview with David Clark, 6 June 2002.
(120.) Elizabeth Earnshaw-Smith interview with Neil Small, Hospice History Project, 30 January 1996.
(121.) Saunders C., Summers D., Teller N., eds. Hospice: The Living Idea. London: Edward Arnold, 1981.
(122.) Thelma Bates interview with Neil Small, Hospice History Project, 19 May 1997.
(123.) Cicely Saunders letter to Dr W.P.L. Myers, 16 August 1976; Clark, Letters, 167.
(124.) Saunders C. Beyond All Pain: A Companion for the Suffering and Bereaved. London: SPCK; 1983.
(125.) Clark D. An annotated bibliography of the publications of Cicely Saunders—2: 1968–77. Palliative Medicine. 1999; 13: 485–501.
(127.) Cicely Saunders letter to Grace Goldin, 5 September 1972; Clark, Letters, 154–155.
(128.) Goldin G. British hospices. Encyclopaedia Britannica, Medical Annual. Chicago, IL: Encyclopaedia Britannica Inc.; 1983: 82–83.
(129.) Cicely Saunders letter to Mother Potier, 22 December 1983; Clark, Letters, 243.
(130.) Cicely Saunders letter to Eric Wilkes, 25 March 1985; Clark, Letters, 258–259.
(131.) Cicely Saunders letter to Sue Ryder, 4 February 1969; Clark, Letters, 136–137.
(132.) Cicely Saunders letter to Dr Brian L. Mishara, 6 December 1972; Clark, Letters, 155–156.
(133.) Clark D. A special relationship: Cicely Saunders, the United States, and the early foundations of the hospice movement. Illness, Crisis, and Loss. 2001; 9(1): 15–30.
(134.) Cicely Saunders letter to Elisabeth Kubler-Ross, 6 March 1975; Clark, Letters, 162.
(135.) Buckingham R.W., Lack S.A., Mount B.M., MacLean L.D., Collins J.T. Living with the dying: Use of the technique of participant observation. Canadian Medical Association Journal. 1976; 115(12): 1211–1215.
(136.) Cicely Saunders interview with David Clark, 19 December 2000.
(137.) Cicely Saunders letter to Dr H.A. Coperman, 15 April 1977; Clark, Letters, 171–172.
(138.) Cicely Saunders letter to Dr H.A. Coperman, 15 April 1977; Clark, Letters, 171–172.
(139.) Cicely Saunders letter to Henya Elkinund, 25 October 1977; Clark, Letters, 175–176.
(140.) Cicely Saunders letter to Professor Tadeusz Koszwarowski, 29 June 1978; Clark, Letters, 181.
(141.) Cicely Saunders letter to Halina Iwanowska, 13 July 1978; Clark, Letters, 182.
(142.) Cicely Saunders letter to Mrs Y. Dale, 14 May 1970; Clark, Letters, 141–142.
(143.) Cicely Saunders letter to The Right Reverend the Lord Bishop of Southwark, 28 October 1975; Clark, Letters, 163.
(144.) Wilkes E. Where to die. British Medical Journal. 1973; 1(844): 32–33.
(145.) Saunders C. A death in the family: A professional view. British Medical Journal. 1973; 1(844): 30–31.
(146.) Cicely Saunders letter to Professor Kenneth Calman, 6 December 1977; Clark, Letters, 177.
(147.) Cicely Saunders letter to The Mother Superior General, 13 November 1979; Clark, Letters, 192–193.
(148.) Working Group on Terminal Care [The Wilkes Report]. Report of the Working Group on Terminal Care. London: Department of Health and Social Services; 1980.
(149.) Cicely Saunders, pers. comm. with the author, 14 March 2000.
(150.) World Health Organization. Cancer Pain Relief. Geneva: World Health Organization; 1986.
(151.) World Health Organization. Cancer Pain Relief and Palliative Care. WHO Technical Report Series 804. Geneva: World Health Organization; 1990.
(152.) Cicely Saunders letter to Florence Wald, 14 January 1969; Clark, Letters, 136. Cicely Saunders letter to Margaret G. Arnstein, 17 April 1969; Clark, Letters, 137. Cicely Saunders letter to Messrs Cotterell and Leonard, 8 July 1969; Clark, Letters, 139.
(153.) Cicely Saunders letter to Dr Claire F. Ryder, 27 June 1969; Clark, Letters, 137–138.
(154.) Cicely Saunders letter to David Frost, 7 November 1974; Clark, Letters, 161–162.
(155.) Cicely Saunders letter to Angela Tilby, 25 August 1976; Clark, Letters, 170.
(156.) King’s College London Archives, SAUNDERS, Dame Cicely (1918 – 2005), K/PP149/2/2/20.
(157.) Cicely Saunders letter to Grace Goldin, 21 January 1980; Clark, Letters, 196.
(158.) Cicely Saunders letter to Professor W.J. Rudowski, 17 March 1981; Clark, Letters, 207.
(159.) Saunders C. Templeton Prize speech, first published in Saunders C. Selected Writings 1958–2004. Oxford: Oxford University Press; 1981: 57–62.
(160.) Cicely Saunders letter to Shirley du Boulay, 17 March 1983; Clark, Letters, 236.
(162.) Cicely Saunders letter to Edward England, 30 January 1984; Clark, Letters, 245.
(163.) Doyle D. Review: Du Boulay, S (1984) Cicely Saunders. The founder of the modern hospice movement. London: Hodder and Stoughton. The Lancet. 1984; 329(8535): 714.
(164.) Cicely Saunders letter to Grace Goldin, 28 October 1980; Clark, Letters, 205.
(165.) Cicely Saunders letter to Grace Goldin, 8 January 1981; Clark, Letters, 206.
(166.) Cicely Saunders letter to The Rev Benjamin Holmes, 6 August 1969; Clark, Letters, 139.
(167.) Cicely Saunders letter to Major General the Lord Thurlow, 8 August 1969; Clark, Letters, 137.
(168.) Cicely Saunders letter to Marty Herrman, 3 June 1970; Clark, Letters, 143.
(169.) Cicely Saunders letter to Marty Herrman, 27 November 1970; Clark, Letters, 144.
(170.) Richard Lamerton interview with Michelle Winslow, Hospice History Project, 14 October 2004.
(171.) Cicely Saunders letter to The Rev W. Benjamin Holmes, 1 December 1970; Clark, Letters, 144–145.
(172.) Cicely Saunders letter to Marty Herrman, 27 November 1970; Clark, Letters, 144.
(173.) Obituary: Ronald Michael Charles Welldon. The Lancet. 1970; 296(7683): 1145–1146. Also abbreviated as a biographical note in Welldon R. The ‘shadow-of-death’ and its implications in four families, each with a hospitalized schizophrenic member. Family Practitioner. 1971; 10: 281–302.
(174.) Cicely Saunders to letter Admiral J.M. Holford, 29 December 1970; Clark, Letters, 146.
(175.) Cicely Saunders letter to Lt General Sir Derek Lang, 15 June 1971; Clark, Letters, 148.
(176.) Cicely Saunders letter to The Times, 1 June 1971; Clark, Letters, 147.
(177.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(178.) Cicely Saunders interview with Neil Small, Hospice History Project, 7 November 1995.
(179.) Wye E.A., Mathisen J.H. A Survey of the Management of Resources at St Christopher’s Hospice. Cranfield: Cranfield School of Management; 1970 [unpublished].
(180.) Cicely Saunders letter to Thelma Ingles, 25 September 1974; Clark, Letters, 160.
(181.) Saunders C. Care of the dying—1: The problem of euthanasia. Nursing Times. 1959; October 9: 960–961.
(182.) Cicely Saunders letter to Professor Dr A. Sikkel, 31 May 1972; Clark, Letters, 152.
(183.) Saunders, The moment of truth.
(184.) Saunders C. Caring for the dying. In Lack S., Lamerton R., eds. The Hour of Our Death. London: Geoffrey Chapman; 1974: 18–27.
(185.) Church of England Board of Social Responsibility Working Party. On Dying Well: An Anglican Contribution to the Debate on Euthanasia. London: Church Information Office; 1972.
(186.) Cicely Saunders letter to A.N. Exton-Smith, 2 August 1973; Clark, Letters, 158.
(187.) Saunders, Care of the dying—1.
(189.) Saunders C. Care of the dying—2: The problem of euthanasia—2. Nursing Times. 1976; 72(27): 1049–1052.
(190.) Cicely Saunders letter to John Fryer, 28 April 1977; Clark, Letters, 172.
(191.) Saunders C. Caring to the end. Nursing Mirror. 1980; September 4: n.p.
(192.) Saunders C. Principles of symptom control in terminal care. Medical Clinics of North America. 1982; 66(5): 1169–1183.
(193.) Cicely Saunders letter to John Fryer, 27 August 1985; Clark, Letters, 261–262.
(194.) Neil Small interview with Sam Klagsbrun, Hospice History Project, 27 February 1996.