The first decade of the National Health Service (NHS) in Britain had seen almost no traction in the development of state-provided care for the terminally ill and those with life-limiting conditions. Most doctors who offered a public opinion on the matter appeared rooted in a paternalist orientation to dying patients and their families and were generally fatalistic about what could be done, other than to make judicious use of morphine injections whenever possible. Where broader thinking and action had occurred—on matters of assessing need, formulating a policy response, and developing new services—these had all taken place outside the NHS and were spearheaded by charitable intervention and individually motivated endeavours. There was some limited contact between a small number of clinicians interested in these issues and, in a few cases, this extended to international exchanges of ideas and publications, study visits, and symposia. By the early 1960s some of this was consolidating. This chapter focuses on the specific contribution of Dr Cicely Saunders and her colleagues. It reveals how she drew, in a syncretistic fashion and internationally, on a wide range of clinical, religious, and cultural influences to formulate her particular approach to the care of the dying. Its elements could then, in turn, be rotated, like the pieces in a kaleidoscope, to produce differing results in different contexts. The end product was always recognizable, whether called hospice or palliative care, but its precise formulation could be a matter for local determination.
Working outwards from the homes for the dying
We have seen that in post-World War II Britain there was an increasing likelihood for dying people to spend their final hours in hospital rather than at home. At the same time, opinions varied on the form of institutional terminal care that should be provided to an ageing population, and concern about the experience of late-stage cancer patients was growing. During these years, small numbers of institutional homes were providing care for the dying, in the main outside the NHS, and in each case drawing on older traditions of religious care or philanthropy. After 1948, most of these continued to function in the shadow of the NHS. A few new developments had occurred in the immediate pre- and postwar period. In Scotland, the Irish Sisters of Charity had opened another hospice in 1950—St Margaret’s at Clydebank. In addition, there were eight newly established Marie Curie residential cancer care homes, which were partly, but not entirely, concerned with terminal care. Elsewhere, in Birmingham the Taylor Memorial Home of Rest, first established in 1910 as a home for women with incurable internal malignancy, had been assimilated into the NHS as part of the Dudley Road Group of Hospitals. The Tarner Home had opened in Brighton in 1936 and concentrated mainly on those close to the end of life.
These homes and hospices made up at best an incomplete patchwork. They were not a comprehensive system of service provision, nor did they see themselves as centres for excellence in teaching or research. Their influence was limited. Nevertheless, in some instances they had developed a cumulative wisdom that could provide the context for innovation. At St Luke’s, for example, ideas about giving analgesia on a regular basis to prevent the recurrence of pain had become well established, and were described by the visiting physician Dr J Cameron Morris in an article1 that appeared in the St Mary’s Hospital Gazette in 1959. St Luke’s also played host to a special symposium on the care of the dying held at St Mary’s Hospital Medical School in May 1961, at which the responsibilities of the doctor (Dr P. Graeme), the almoner (H. Muras), and the chaplain (Revd R. Yale) were considered2; this must count as one of the earliest multidisciplinary symposia of its kind. Similarly, under the leadership of Sister Paula, the newly built (1957) Our Lady’s Wing at St Joseph’s, Hackney, had begun to attract interest from medical students and other visitors who, like Cicely Saunders, were impressed by the attention to individual care given there.
Every new patient is greeted by one of the Sisters: ‘You’re welcome, Mr X.’ He is welcomed into a place that will be home rather than just another hospital … He is welcomed by someone who is really interested in him as a person, in his soul and in his mind as well as his body. His physical burden will be lifted and his individual ways … will also be respected as far as possible.3
Despite the heavy emphasis upon charity and, in some instances, the idiosyncratic use of country mansions in inaccessible places, the homes for the dying made their contribution to the modern hospice movement that was soon to follow. Although they appeared at odds with most of the principles of a modern health service run on bureaucratic lines, these early homes nevertheless provided an enduring quality of self-help and voluntarism, which came to be reworked in a new context. Certainly, their influence on the development of Cicely Saunders’s thinking was extremely important. While training in medicine, she visited and studied them. However, it was in a crucial seven-year period (1958–1965) while working at St Joseph’s that she developed both her central clinical ideas and her plans for the creation of a new form of institutional provision for patients at the end of life—plans that would prove massively consequential.4,5
Cicely Saunders—the person, the motivations, and St Christopher’s Hospice
It is time to say more about the life of Cicely Saunders,6 a woman who by the early 1960s was making a significant impact on discussions about care of the dying in British medicine and healthcare. Cicely Saunders was born in Barnet, Hertfordshire, on 22 June 1918, and at the age of 20 went to read Politics, Philosophy, and Economics at Oxford University. Two years later, she interrupted her academic studies to become a student nurse at the Nightingale Training School at London’s St Thomas Hospital. When a back injury forced her to leave nursing, she returned to Oxford, and qualified in 1944 with a diploma in Public and Social Administration. She then commenced training as a hospital almoner, or medical social worker.
In 1948 while at the London Hospital, she cared for a dying Jewish émigré, David Tasma.7 In a matter of weeks, following regular visits by her to the hospital, a profound bond developed between them. He had told her ‘I only want what is in your mind and in your heart’, and they discussed the possibility that one day she might found a special place more suited to those in his condition. Their exchanges served as a fount of inspiration, and they later became emblematic of Saunders’s wider philosophy of care, but beyond them lay a great deal of further searching, both intellectual and spiritual. When he died on 25 February 1948, Tasma left Saunders with a gift of £500 and the encouragement: ‘Let me be a window in your home.’
Afterwards, she became determined to learn more about the care of those with a terminal illness. From the late 1940s, she worked at St Luke’s as a volunteer, beginning to acquire knowledge of terminal care practice and drawing on the writings of Dr Howard Barrett, who had been a dominant figure in the work there until his death in 1921. In St Luke’s she saw demonstrated some of the principles of pain relief, which she would later do much to promulgate. She then made the important decision to study medicine, starting in 1952, and qualifying in 1957 at the age of 38. In her final months as a medical student she drew together a comprehensive paper on the care of the dying,8 describing four case studies of cancer patients with advanced disease, covering their medical histories in the years 1950–1956, and drawing on the experience of working at St Luke’s, as well as visits to other London terminal care homes. The paper included sections on general management, nursing, the terminal stage, and pain. She also explored the value of special homes for terminally ill patients, refuting the notion that these are ‘dismal and depressing places’ and arguing for the importance of specialist experience in such areas as pain, fungating and eroding growths, mental distress, fear, and resentment. She wrote about the importance of telling the patient and relatives about the diagnosis and prognosis, and about the spiritual care of the patient and family.
In 1958, with funding from the Sir Halley Stewart Trust, Saunders was able to focus exclusively in this area and took up a position as research fellow at St Mary’s School of Medicine, conducting work at St Joseph’s Hospice in Hackney, in the new hospital wing. It was here between 1958 and 1965 that Cicely Saunders taught herself as much as she could about the little-explored field of terminal care, and over time built up a nascent network of international contacts. She also formed her key ideas and specific clinical practice, laying down what were to become the fundamentals of modern hospice care. In particular, she became interested in the regular giving of analgesics and was attracted to the pain-relieving mixtures that were in use in London at that time. She also became fascinated by the relative merits of morphine and diamorphine for pain control, and her knowledge of new approaches emanating from the growing field of pain medicine steadily increased.9
At St Joseph’s, she had an opportunity to put these ideas into practice and to develop a wider view of pain in the context of the whole person’s suffering. Here she experienced a culture of religious solicitude that fostered her belief in the dignity of dying and the care of both body and soul. She also began teaching and, crucially, formulated her ideas about how all of this could be translated into a modern context with the potential for wider influence. She resolved to establish her own hospice, built for the purpose and founded on what she had learned from the London homes for the dying, and others she had studied at a distance.
Formulating the idea
By the end of the 1950s, Saunders was well established in the intention of dedicating the rest of her life to developing a modern approach to the care of the dying. She viewed this work as a matter of personal calling. She had studied medicine as a third profession, specifically to do something about the problem of pain in patients dying of cancer. In 1959, she was 40 years old, unmarried, and a committed Christian whose evangelical orientation was beginning to broaden. She had gained experience in the care of the dying as a nurse, social worker, volunteer, and researcher. However, at this time she was still seeking to clarify her initial ideas, striving to create a programme for action, and working hard to realize her vision.4
Crucial to this process was the question of the religious and spiritual foundation of the institution she was to establish. The issue had come early onto the agenda, after she had first raised it in 1959 while on a personal retreat at the Mother House of the Church of England, order of St Mary the Virgin, at Wantage, Berkshire. Subsequently, as she assembled around her a group of friends and associates who might help in her quest to found a new home for dying people, she quizzed them in turn on the question of religious priorities. Throughout the early part of 1960, there were numerous meetings, and extended correspondence with a clutch of evangelically inclined Anglican friends. By the end of the year, enough clarity had emerged that was sufficient to take the project forward. Though the protagonists were likely unaware of it, their deliberations were also to have a profound influence upon the later development of what became known as the hospice movement.
The first clear evidence of Cicely Saunders’s strategic intentions about the formation of a new type of hospice came in the second half of 1959, when over the space of a few months she circulated a 10-page document to several associates, seeking their reaction. Entitled The Scheme, it set out de novo the structure and organization of a modern terminal care home containing 60 beds, together with staffing levels, capital and revenue costs, and contractual arrangements. By the end of the year, the ‘home’ in question had a name: St Christopher’s Hospice. In this place, the patron saint of travellers would thus accompany those making their final earthly journey. Soon, a small but enthusiastic group of supporters had formed, including Dr Glyn Hughes, author of the recent report on the state of terminal care in Britain; Betty Read, head almoner at St Thomas’s Hospital; and Jack Wallace, an evangelical friend and lawyer. The group was soon joined by Evered Lunt, Anglican bishop of Stepney; Sir Kenneth Grubb of the Church Missionary Society; and, very significantly, Dame Albertine Winner, deputy chief medical officer. Led by their enthusiasm, and the inspiration and energy of Cicely Saunders herself, they set about raising funds to bring the enterprise to realization.
Shirley du Boulay,10 in her biography of Cicely Saunders, correctly argues that it was the connection with Dr Olive Wyon, then a retired theologian living in Cambridge, which did much to clarify a major issue that Cicely Saunders was grappling with at this time—the precise character of the proposed venture as a community and, in particular, the relationship between its religious orientation and medical practice. Among Olive Wyon’s interests were the new religious movements and communities that had developed after World War II across Western Europe,11 and it was her knowledge of these new waves of religious development that was to prove so helpful. Cicely Saunders first wrote to Olive Wyon on 4 March 1960 at the suggestion of Sister Penelope at Wantage. Her letter set out some of the background.
The problem about which I wrote to Sister Penelope, is the question of the ‘Community’ which some people seem to see envisaged in my plan. I am tremendously impressed by the love and care with which the Irish Sisters give to our patients—something more than an ordinary group of professional women could ever give, I think. But I was not really thinking of anything nearly so definite as a real new Community, I think I was using the term in a much less technical way. I asked Sister Penelope if I was attempting the impossible to hope that a secular group of people without any kind of rule would be able to hold together and give the feeling of security, which I want so much to help our patients … So I am really faced with two problems. On the spiritual side, I know that the spiritual work is of paramount importance and while it goes hand in hand all the time with our medical work, it is the only lasting help that we can give to our people … I feel that the work should be a definitely Church of England one rather than interdenominational and that it must be widely based in the Church, and not just in one wing. Then the other problem is this question of a Community of those who work there. I think myself that this matter should be held in abeyance; I may have adumbrated it in my scheme, but I had not been thinking of going any further than pray for the right people to come, and wait for the leading of the Spirit should He want us to draw together more definitely.12
In just over a week, Cicely Saunders had visited Olive Wyon, and came away feeling supported. She had been encouraged to make contact with the Sisters of Commaunaté at Grandchamp in Switzerland, and she wrote soon afterwards to the foundress, Sister Genéviève, who replied with information about the community and an invitation to attend a retreat in the summer. Her relationship with Grandchamp is an interesting one, but it does not seem to have strengthened Saunders’s convictions about establishing her hospice as a form of new religious community. Initial attempts to make a connection with Grandchamp were surrounded with difficulties. In July 1960, a visit was postponed as she felt unable to leave Antoni Michniewicz, a patient for whom she had been caring over the past seven months at St Joseph’s Hospice and who was now nearing death. In June of the following year, despite hesitation due to her father being unwell, it was possible to make a retreat there, but during this visit, she received the news that her father had died. Nevertheless, her links with the sisters at Grandchamp, who undertook to offer prayers for St Christopher’s, continued for many years thereafter.
However, in 1960, two issues required resolution. The first was dealt with straightforwardly. The second remained unclear, and continued to be so, even as St Christopher’s moved towards its opening day. First was the question of the precise religious character of the hospice. The debate was initially about in which theological wing of the Church of England the hospice should be located, but quickly ecumenical ideas and the influence of wider discussions about Christian unity became apparent. This was the extent of interfaith considerations; Britain in these years was still some way from addressing multicultural issues, and the question of non-Christian religions was not given any acknowledgement. That would come later. To a considerable extent, the issue was resolved pragmatically; a major source of charitable funds, the City Parochial Foundation, was showing an interest in the project, but the Foundation was unable under its terms of trust to give to a purely Anglican venture. As Saunders noted in a letter to her brother on 30 August 1960, ‘I very much prefer something that is “inter” rather than “un-” ’,13 referring here to the question of the denominational character of St Christopher’s. Betty West, the mother of a friend from medical school, had captured this sentiment months earlier in a letter encouraging her not to be too dismayed by the apparent diversity of Christian influences that were helping to form St Christopher’s: ‘Could it be do you think, that in heaven our ways don’t seem quite so different as they appear to us—and who knows that the edges might well melt away or not matter so much.’14 By the end of 1960, the issue was settled and Cicely Saunders wrote the following to Olive Wyon on 6 December 1960:
We have decided that it shall be an interdenominational foundation, although we will have something in the documents stating as firmly as possible that it must be carried out as a Christian work as well as a medical one … I found that I just couldn’t think it was right to be exclusive. First of all, I could not be exclusively evangelical and thought that perhaps it would therefore have to be Anglican to keep it safe from heresy or secularisation. But then it didn’t seem right to be that either, and in our legal Memorandum stands the statement: ‘there shall be a chapel available for Christian worship’, and I do not think that really we could be much broader than that!15
For the second question however, which was that of St Christopher’s as some form of community, no such categorical statement appeared. Indeed, there was a sense that this issue remained something to be explored and later encountered, even as the work of the hospice got under way. Whereas on the question of denominational identity, Saunders had felt that her supporters and collaborators were taking a broader view than her own, on this second issue it was as if they constrained her from the possibility of a more strongly communal orientation. The almoner Rosetta Burch expressed this clearly in a letter of 16 June 1960:
To the outside world you must be first and foremost a medical concern … You are a Christian doctor not a spiritual leader with a medical vision. You have lots of experience of working with others on a professional basis but God has never given you the experience of being a member of a Community. Don’t you think he would if that were to loom large in his plan?16
So it was that Cicely Saunders was able to write to Olive Wyon at the end of 1960 that ‘it does not seem to have been right to think much more along the lines of a Community for this Home at the moment. I think that if we are to be drawn together in this work, that it will happen when we get there’.15
It is now clear that 1960 was an intensely formative year for Cicely Saunders. It was a year of deep reflection and consultation with others on the precise nature of her vision for St Christopher’s Hospice. It was also the year in which the death of one particular patient, Antoni Michniewicz, created in her a powerful and abiding sense of loss for a relationship that never came to fruition, yet at the same time made her feel that she was capable of giving a true authenticity and imperative to her subsequent work.10 The issues that she had explored at such length with her friends and associates during that year would continue to tax her imagination and energy, but a clear and pragmatic turn had occurred, which enabled the purposes of St Christopher’s to be explained succinctly to the wider public, including potential donors.
A few years later the supporters of St Christopher’s, who had been meeting since 1962 under the guidance of the bishop of Stepney (in what they called ‘a community of the unalike’), sought to clarify and set down in a statement the basic principles of their work. It was at one of these meetings in June 1964 that Olive Wyon ‘made an excellent digest of my woolly thoughts’, Cicely Saunders later wrote in a letter to Wyon.17 The result was a document entitled Aim and Basis that was to have currency at the hospice for many years in the future.18 Within it, St Christopher’s Hospice is defined as a religious foundation based on the full Christian faith in God, with five listed underlying convictions.
1. All persons who serve in the hospice will give their own contribution in their own way
2. Dying people must find peace and be found by God, without being subjected to special pressures
3. ‘Love is the way through’, given in care, thoughtfulness, prayer, and silence
4. Such service must be group work, led by the Holy Spirit, perhaps in unexpected ways
5. The foundation must give patients a sense of security and support, which will come through a faith radiating out from the chapel into every aspect of the corporate life
The Aim and Basis provided St Christopher’s with a statement of its underpinning motivation, which was reviewed from time to time in later years. The discussions that preceded it, however, were to shape the work of the hospice for many years to come. They reveal a profound sense of purpose coupled with a rigorous approach to debate and discussion, which were essential in establishing the dominant themes in the world’s first modern hospice.
Nevertheless, other energies were also required at this time. Saunders was starting to receive visitors at St Joseph’s and some of these developed into wider connections and networks. One chilly day in November 1960, she received a visit from Dr K. J. Rustomjee, of Colombo, Ceylon. He had arrived at St Joseph’s Hospice in Hackney, eager to meet the enthusiastic doctor who had been working there for the past three years improving her understanding of terminal care, and also attracting attention for her publications in Nursing Times19 and a substantial chapter in Ronald Raven’s recent six-volume edition on Cancer.20 The two bonded immediately and soon ‘Rusty’ and she were in regular contact by airmail. A prodigious worker, he had done much to champion the need for cancer care in Ceylon. His interests spanned the entire spectrum, from disease prevention, to treatment and terminal care. In particular, Dr Rustomjee harboured his own ambition to establish a terminal care home in Colombo. Some years before, the Ceylon Cancer Society, of which he was president, had pledged to the then Prime Minister S. W. R. D. Banderanaike that the Society would establish such a home for the shelter, comfort, and peace of terminal cancer patients. By the time he and Cicely met in 1960, plans were well advanced, and by early 1961, an elephant was deployed to clear the site in preparation for building.
In their correspondence, Saunders and Rustomjee exchanged news and updates on their parallel projects. While her letters were carefully typed by her secretary of the time, Jenny Powley, his were handwritten. Hers were quite formal, his less so. Nevertheless, they did exchange pleasantries about the weather, bouts of illness, and events of the day. Over the years, she updated him on the fundraising work for St Christopher’s and the successes and disappointments along the way. She also supplied him with a steady stream of reprints of her publications from the period.
At the same time, he shared with her the details of the home being built in Ceylon, its facilities, and how it was to be staffed. He then sent a full album of photographs depicting the opening ceremony, of 19 November 1962, with its ritual lamp-lighting and Buddhist ceremonial paraphernalia. Dr Rustomjee had many connections. When he visited St Joseph’s in 1960, he was en route to Ceylon from the United States where he had undertaken a wide-ranging tour of organizations and facilities engaged in cancer care. On this same visit, he had also attended the Fourth National Cancer Conference, which had taken place over three days in September at the University of Minnesota, Minneapolis. He wrote up the whole experience in a report sent to Cicely Saunders in February of the following year. When in summer 1962, she contemplated making a similar visit, he was quick to step in and make the necessary introductions. These included a connection to Mildred Allen at the American Cancer Society, as well as to the Home of our Lady of Good Counsel in Minnesota. The following year Cicely Saunders headed to the States herself, followed in his footsteps for part of the way and, on concluding her trip, she did as her friend by preparing a detailed report that she could pass on to others. Her connection with the American Cancer Society was to be long lasting and beneficial.
By the time Cicely Saunders met with Dr Rustomjee, she was already actively engaged in communicating her ideas to those who had the material wherewithal to turn them into reality.4 By early 1961, there were architectural drawings of the hospice and an estimated cost of £376 000, although in the inflationary environment of the times the architect warned that prices were rising daily. By 1966, with building well underway at the chosen location in Sydenham and the project budget now estimated in excess of £400 000, there was still a considerable shortfall in funds and the national financial climate was not favourable. By early 1967, the overall budget stood at £480 000; but by June a team of staff had been appointed, the building commissioned, and the first patients were beginning to arrive. By opening day, 24 July 1967, all debts had been cleared.
There was also a growing critical mass of friends, acquaintances, supporters, and colleagues gravitating around the hospice founder and her ideals. Dr Mary Baines is a good example. She had been at medical school with Cicely Saunders, as had Tom West and Gillian Ford, who also became closely involved with St Christopher’s. Baines and Saunders were active in the Christian Union, but after graduation they lost touch with each other. Mary Baines recalls how they were reconnected.
I’ll never forget this … it was in 1964 and I was just at home, I think it was a Sunday evening, Ted [her husband] was out and by chance, I turned on the radio, and there was my old friend Cicely Saunders, whom I’d lost touch with since medical student days. And she was giving This Week’s Good Cause appeal on behalf of the hospice she was going to found. And I sent her three pounds, which was a lot of money then, and especially for an impecunious clergy wife and became a ‘Friend of St Christopher’s’. And then a really extraordinary thing happened really, in that Ted was invited to become a vicar in Beckenham, which is three miles from here. This was in April ‘67. So we moved up to this area before St Christopher’s was opened. And before coming up, I had arranged, and gained, another part-time GP job in Norwood, which is not very far from here. I then came to the opening of St Christopher’s in July ‘67 and at that time met up with Cicely again. And she sent me a letter which I’ve got a copy of, saying, and it was a very clever letter, and I’ve laughed about it with her many times, saying that as I was a local general practitioner, and would be sending patients to St Christopher’s, would I like to come round one afternoon and have a private look round with her? And of course it was a great big hook. And I fell for this. So I guess it would have been somewhere, August/September, that sort of time, that I came, and she then asked me whether I would like to join her at St Christopher’s … And I didn’t think I wanted to work with the dying, and all sorts of very good reasons, because it was a very unusual thing. And I sent this letter to her, and even suggested the name of a friend of mine who might be interested in the job, as I patently wasn’t! But then we thought it over, and prayed it over, and talked it over, and it did seem the right thing to do … And joined here in April ‘68. So that’s how it happened.21
An article published in The British Hospital Journal and Social Service Review soon after the opening amounts to a prospectus for St Christopher’s. The hospice ‘will try to fill the gap that exists in both research and teaching concerning the care of patients dying of cancer and those needing skilled relief in other long-term illnesses and their relatives’.22 On opening, the hospice contained 54 inpatient beds, an outpatient clinic, and also 16 beds available for the long-term needs of staff and their families. There would be an emphasis on providing continuity of care for those able to return home and there were plans for a domiciliary service. Relatives’ involvement in care would be encouraged. Research on pain, developed at St Joseph’s, would be extended. The hospice was to be ‘a religious foundation of very open character’, and there was a sense that the whole endeavour amounted to an elaborate pilot scheme, which could have extremely far-reaching implications.
Indeed, Cicely Saunders and others around her, even before the opening of St Christopher’s, had an intuition that this was a project far greater than building a single new hospice, taxing though that may have proved. Colleagues wrote from America urging her to realize that she had two obligations: one, to develop the work of her own organization, and the other to spread her learning further afield. Therefore, the practical accomplishment was about more than St Christopher’s Hospice alone. Links had already been established with a wide range of hospitals and nursing and theological colleges, and there were plans for exchange visits with colleagues in Yale, Harvard, and other centres in the United States. Within a few years, voluntary, independent terminal care services would proliferate, and the modern hospice ‘project’ would have a growing influence on policy and practice. A nascent movement4 was under way, the starting point of which, most marked in the British context, was outside rather than within the formal healthcare system. For this movement to flourish and grow, it would need Cicely Saunders to apply enormous levels of personal energy, commitment, and resilience.
Three visits to the United States: 1963, 1965, and 1966
A striking feature of Cicely Saunders’s practice during the formative years of St Christopher’s was the way in which she forged links with and drew strength from colleagues in America. She made three key visits in the 1960s that yielded a huge amount in terms of knowledge, insight, and collaboration. The first, in the spring of 1963, was a tour de force, covering the East and West Coasts and making connections with individuals from a variety of disciplines who would become influential in forging modern ideas about ‘hospice care’ across the United States. Afterwards she compiled a detailed report of her experiences and went to considerable trouble to send copies to many people she had met. Indeed, she soon ran out of copies, as demand outstripped supply, and she underestimated the level of interest her report would attract. Three of those who she encountered on the trip were asked to become vice presidents of St Christopher’s Hospice. The first was Professor Gordon Allport, a contact made through her brother, Christopher, who was chair of psychology at Harvard University and executive secretary of the Ella Lyman Cabot Trust, which supported the visit to the United States. Second was Theodate Soule, who was a consultant to the Hospital Social Service Fund in New York; and third was the Revd Almon Pepper, director of the department of Christian Social Relations at the Protestant Episcopal Church in New York, who subsequently attended the laying of the foundation stone for St Christopher’s in 1965.
For a lone Englishwoman who had never before travelled to the United States—a country at that time in considerable foment over civil rights and international relations issues—it was a remarkable tour, lasting eight weeks. Taking in New York, Yale, Boston, Washington DC, Los Angeles, San Francisco, and Vancouver, she visited 18 different hospitals of varying types, as well as the National Institutes of Health in Maryland. Along the way, she met with doctors, psychiatrists, nurses, social workers, social scientists, and hospital chaplains. As she noted in the introduction to her report, ‘I found it a great asset that I was able to go in my threefold capacity of nurse, social worker, and doctor. It made my own approach a broad one and also made me “one of them” when I discussed problems with each of the different professions’.23 There are sections in the report dealing with pain in terminal cancer; the mental pain and distress of dying patients; relatives and their problems; homecare programmes; nursing homes; and the work of chaplains.
Several of those she met on this visit became long-standing colleagues and friends, and over time, an elaborate network of individuals concerned with the care of the dying began to develop. In the early 1960s, letter writing was their main means of communication, coupled frequently with an enthusiastic exchange of reprints from recent publications. In these years, Cicely Saunders was a prolific letter writer and her correspondence gives remarkable insight into the energy with which she pursued her links with the United States and the benefits that flowed from them. Her personal papers contain no less than 15 archive boxes of correspondence with US colleagues, much of it covering the period up to 1967.24
Regular correspondents on the US West Coast were Dr Herman Feifel, chief psychologist at the Veterans Administration in Los Angeles and author of key early work on aspects of death and dying,25 as well as Esther Lucille Brown, a social anthropologist working with the Russell Sage Foundation. Brown was a frequent source of letters and ideas, with specific interests in improving the quality of nursing care. On the East Coast, Florence Wald (Figure 4.1), then dean of nursing at Yale; Professor Gordon Allport; and Carleton Sweetser, chaplain at Memorial Hospital, New York, all became close colleagues.
The link with Yale was to be particularly significant. Cicely Saunders’s first visit had been at the invitation of Dr Bernard Lytton, a former surgeon at the London Hospital, from where he had visited St Joseph’s Hospice once a week. On moving to Yale and learning of her planned visit to the United States, he invited his friend to lecture at the university. At Yale, she spoke first to the student council in the school of medicine and then, by special request, repeated the talk the following day to the faculty of postgraduate nursing. It was at the second lecture that she met Florence Wald, who remarked afterwards, ‘this is what we have lost, and this is what we need’.23 Florence Wald explains:
Virginia Henderson was doing an annotated index of all the nursing literature from the 1900s. Everything that was written in English, and so when she saw the name Cicely Saunders she knew what she was doing. I knew nothing about her at all and she said, ‘Well you must go and hear her.’ And I said, ‘Well, I’m stuck because I’m supposed to be introducing the speaker at another forum and I don’t feel as if I can get out of that.’ So she said, ‘Well, I’ll go and I’ll report back to you,’ which she did and just said, you know: ‘We’ve got to get this woman to speak.’ She was talking about how she’s taken care of the dying patients, and our faculty and our students were struggling very much with the intensive treatment that was going on and on for patients and how they were debilitated by this and the … inability to stop using those kinds of therapeutics. And so I immediately got in touch with Bernie Lytton and Cicely agreed to meet our students in faculty the next day, and I gathered as many people from the hospital as I could in the departments of social work and so forth, and she did the same presentation. And of course it just ‘wowed’ us. And then you have to realise that in that same month in May 1963 that’s when the marches of Martin Luther King began in Selma … and Alabama. And it was in that summer that doctors and nurses also began to join in the fight against segregation. So that, you know, it found us at a time when the kinds of things that we were suffering, there suddenly seemed to be a way to move.26
As Joy Buck, the historian of American nursing, has noted, Wald was at a critical point in her own life in 1963. She was an advocate for major reforms in nursing education and the clinical role of the nurse and, like Cicely Saunders, believed that professional nurses should eschew non-nursing tasks to give more focus to care at the bedside. She was also deeply sceptical of the drive within medicine to prioritize technology and cure over an emphasis on care of the person. Wald believed the hospice concept offered the perfect vehicle by which she and other reformers could achieve a ‘brave new world’ in healthcare with nursing and medicine working together as equals at the helm.27
Saunders’s second visit to the United States began in May 1965 in New York with a lecture at the Postgraduate Center for Mental Health, followed by speaking engagements at Yale, and meetings at the Massachusetts General Hospital with Professor Lindemann, a psychiatrist and an early bereavement researcher who developed the concept of anticipatory grief. On this occasion, as before, financial assistance from the Ella Lyman Cabot Trust was made available, mediated through the good offices of Gordon Allport. Saunders observed to Esther Lucille Brown: ‘I cannot be too grateful to them, for not only did they help me very substantially on my last trip but they also sent me a most generous gift as “seed money” for St Christopher’s. I am most undeservedly fortunate in the people who support us.’28 In the case of Gordon Allport, there was also an emotional and intellectual debt, for it was he who in 1963 had first introduced her to the writings of the Austrian psychiatrist and concentration camp survivor Viktor Frankl, in particular Man’s Search for Meaning,29 which was to prove very influential upon her thinking in the coming years.
American colleagues also proved to be useful sounding boards about events and developments taking place back in London. After writing to Esther Lucille Brown about leaving St Joseph’s in the autumn of 1965, her friend wrote back: ‘It must have been a wrench to leave St Joseph’s after seven years there. I believe, however, that this is a most auspicious moment for you to sever ties and prepare yourself psychologically for initiating your new program in your own new hospital.’30 On another occasion when the finances of St Christopher’s had taken an upturn, Brown wrote: ‘Isn’t it marvellous how financial sustenance at this very trying moment has been coming to your rescue. I do hope that it will continue …’31
Regular correspondents all received the newsletter, which contained details of the development of St Christopher’s; this was clearly an important channel of communication and often featured in the exchange of information and the words of encouragement that were such a feature of the letters to and from Saunders’s American colleagues. Perhaps resulting from the cultural disposition of the Americans with whom she made contact, there was a tendency for her to receive greater recognition of the wider import of her work from across the Atlantic than she found at home. In due course, the UK–US traffic became two-way, with American visitors arriving in London to visit St Joseph’s and the still-to-be-opened St Christopher’s with increasing regularity. Anselm Strauss, for example, a San Francisco-based sociologist and pioneering researcher on awareness contexts in dying,32 visited her in the autumn of 1965 and many others followed.
Saunders’s third sojourn to North America began in April 1966 with six weeks at Yale, before moving on to Cleveland and then Vancouver. She began her lecture at the Yale School of Nursing as follows.
This is the third time I’ve been at Yale, and like St Thomas’s Hospital, I think you must begin to feel that every time you get rid of me, I come back in another capacity. This time I’ve chosen the title, ‘The Moment of Truth’, not because I just want to discuss the perennial question, ‘Should you tell the dying patient the truth?’ (which is not really the right question anyway), but because meeting dying patients and facing the fact of death does concern all of us, whether we’re nurses, doctors, social workers, psychologists, or of any other discipline; I think perhaps almost most of all, when we’re just members of the family. This moment is, or should be, a moment of truth, not just a matter of words, who says what and when, but something much more deep and far-reaching than that in its implications, implications which, I think, are relevant to the whole of life.33
While at Yale, Saunders also met with two major figures in the emerging psychiatry of dying and bereavement: Elisabeth Kübler-Ross, who was visiting from Chicago; and Dr Colin Murray Parkes (with whom she had already become acquainted in London), who was spending a year in Harvard. Their first encounter brought together a remarkable triad of names that were to become synonymous with the modern care of the dying and bereaved. Kübler-Ross was at that time working as a psychiatrist at the Billings Hospital and University of Chicago, where she had begun to embark on a series of important and widely acclaimed works on death and dying.34 Parkes was later to work closely with Saunders at St Christopher’s, where he brought his psychiatric perspective not only to the care of patients and families, and to research, but also to the support of the staff. Speaking in 1996, he recalls some of the early contacts in the field.
It must have been about 1964 I made my first visit to America. I was lecturing on bereavement at Billings Hospital in Chicago where I’d been invited by Knight Aldrich who was the Professor of Psychiatry there. And he said, ‘Well, I’ve got an interesting trainee, a junior psychiatrist working here on the subject of psychological reactions to terminal illness.’ And he introduced me to this lady, Elizabeth Kübler-Ross, and I actually sat behind a one-way vision screen and watched her interviewing patients. She was collecting information for what was subsequently her book, On Death and Dying it was called, in which she described the stages of dying.35
Cicely Saunders continued her frequent visits to Yale, and in June 1969, she was awarded the degree of Doctor of Science from the university. Her friendship with Florence Wald was also to grow and thrive over many years, particularly as developments for America’s first hospice, in New Haven, got underway. Likewise, Colin Murray Parkes got involved with St Christopher’s from the outset and became a lifelong colleague.
Publications in the United States
In February 1964, Cicely Saunders received an invitation from the Episcopal Church Center in New York to write for The Living Church, an American journal, on the topic of ‘Facing death’. The theme of the article36 was the denial of death, and in it Saunders suggested that acceptance of one’s mortality was a route to finding meaning in life itself. She described the case of a young woman, about to die, who wanted to assist her children and husband through the process, and the reactions of the staff. The paper rejected the apparently ‘swift and easy’ solution of euthanasia in these cases and suggested that religious peace may come to dying people in such circumstances, even those who seem most indifferent and recalcitrant before the end.
Inspired by this, Dorothy Nayer, associate editor of the American Journal of Nursing, then wrote to Cicely Saunders requesting an article that would help readers come to terms with their attitudes about death and assist them in their service to dying patients and their families. Characteristically, a detailed correspondence ensued. Saunders checked on various themes that might be explored in the article, discussed the use of illustrations, and asked for advance copies of two papers by Anselm Strauss that were to appear in the journal at a later date. The editor was delighted with the result. Illustrated by impressive line drawings, the article37 took as its theme the idea that the last stages of life should not be seen as defeat, but rather as life’s fulfilment. Using case illustrations from St Joseph’s Hospice (although the name appeared incorrectly in the text), it focused on the nursing aspects of care, especially the responsibility of telling or not telling the patient about the prognosis. Readers were as enthusiastic as the editor, and nurses from around the country wrote in with their endorsement. Typically, each received an individual and detailed reply from Saunders. Her association with this publication continued, and in December 1971 the journal ran a special feature on ‘Christmas at St Christopher’s’; indeed, some of those who had read the original article in 1965 were still writing in with requests to visit the hospice many years later.
The third American publication for which Cicely Saunders wrote in the decade before St Christopher’s Hospice opened was the journal Geriatrics. This took the form of an extended letter, produced by invitation.38 In it she gave details of the developing plans for St Christopher’s and the goal of making an impact on the lack of interest in research, teaching, and care relating to the dying. It emphasized the concept of a ‘hospice’ as a resting place for travellers and pilgrims, something between a home and a hospital, and also noted that the project had already established international links, particularly with the United States.
By late 1965, Saunders’s reputation in the United States was growing rapidly. Media attention followed, along with requests for her help and guidance, as well as for her to speak at meetings and write for other publications. In May 1966, she took part in a series of lectures at Western Reserve University in Cleveland, Ohio (later published39), titling her talk ‘The Moment of Truth: Care of the Dying Person’. The other lecturers included Lawrence Leshan (‘Psychotherapy with the Dying Patient’); Anselm Strauss (‘Awareness of Dying’); Robert Kastenbaum (‘Psychological Death’); and Richard Kalish (‘The Dying Person: Impact on Family Dynamics’).
By autumn 1966, there was a sense of an emerging critical mass of interest not only in her work, but also in the wider field to which she was contributing. By now, what Robert Kastenbaum referred to as ‘our little death newsletter’40 had evolved into the journal Omega, and was reproducing her article ‘A medical director’s view’, which had appeared first in the journal Psychiatric Opinion.41 These early publications in the United States spanned several key disciplines and audiences: the church, nursing, medicine, and psychiatry. America was learning about the work of Cicely Saunders and she was learning from America.
Perhaps more than anything, it was the opportunity America afforded for access to a range of disciplines and perspectives that was so important to Saunders as she, in her own words, picked up ideas like a sponge. Here she could meet chaplains, such as Carleton Sweetser, struggling with the care of the dying in a modern hospital setting, and social workers, like Theodate Soule at the United Hospital Fund of New York. In addition, there were psychologists, sociologists, and anthropologists who, unlike most of their contemporaries in Britain, were also contributing to developments in the field of care for the dying.
There was also the new cadre of pain specialists, such as Stanley Wallenstein and Ray Houde, at Memorial Hospital, New York, and Henry Beecher at Massachusetts General Hospital, from whom she received encouragement and inspiration for her own studies. It resulted in a rich mixture of influences and skills, and one that was later to become such an important aspect of the modern multidisciplinary specialty of hospice and palliative care. There was a sense of forces coming together, of new possibilities. A special relationship was forged between Cicely Saunders and her American friends and colleagues during the mid-1960s. The relationship was part of an extraordinary groundswell of interest in the care of the dying and the bereaved, out of which new social movements and professional specialities were quick to emerge, not only in Britain and the United States, but worldwide. Moreover, in this process the activities at St Christopher’s were to prove a key demonstrator.
Making St Christopher’s work
The opening of St Christopher’s Hospice marked the culmination of one aspect of Cicely Saunders’s 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. Above all, it would begin to serve as a source of inspiration to so many others in Britain and around the world. From the opening of the hospice in the summer of 1967 to the autumn of 1985, a period of 17 years, Cicely Saunders was its medical director. The job involved a huge quantum of daily clinical work and numerous organizational responsibilities, as well as financial concerns, which were never far away. There was also the need to attract appropriate staff, and in this, her methods were often direct. She had attended medical school with Tom West, who later joined the Church Missionary Society; when she heard he was resigning from the mission field, she quickly wrote to him.
And when Cicely Saunders heard that I had given in my notice, she wrote and offered me the job of her deputy at St Christopher’s. I wrote back and said that I was delighted and flattered to take this very honourable job on. I had been home on such occasions as the laying of the foundation stone for St Christopher’s. I had followed the progress, through my mother and through Cicely, of the building, and thought and prayer behind St Christopher’s, and I was deeply honoured. But I did say I can’t join you for two years, therefore, there’s not much future in this offer. And she wrote back and said, ‘In that case we’ll wait for you,’ which I often think is the greatest compliment that Cicely ever paid me. The other thing that she did, which was wonderful, was in the six months or year before I left Northern Nigeria, she sold a rug which she’d inherited from her father and came out to see me in my context, saying, ‘You’re going to spend the rest of your working life in my place, I think I better come out and see your place before you leave it!’ And that was good. So in 1972 I left Nigeria and came back, and started a job as deputy to Cicely in 1973, by which time, of course, St Christopher’s was up and going. And I reckon that I came in as, not perhaps the second wave, but as the one and a half wave of new appointments.42
For Saunders these years were filled with regular travelling, lecturing, and writing. They were times of growing recognition for the movement that she and her colleagues had initiated and of the global contribution she was making to improvement in the care of the dying. With this came a measure of fame that Cicely Saunders might hardly have contemplated in 1959. Quite quickly, there were awards and honours, plaudits, and frequent publicity. At the same time, her personal life became more rewarding and eventually led to marriage. These were expansive years, professionally and personally rich, and lived to the full.
At St Christopher’s, new staff continued to be appointed, procedures and policies were developed and refined, and the credibility of the service in the local area was confirmed. The hospice became a training ground for many doctors who would subsequently shape the direction of hospice care elsewhere in the United Kingdom and further afield. At a symposium in October 1970, an overview of the work of St Christopher’s emphasized several points.43 Despite a continuing reliance on charitable grants and gifts, the NHS 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 NHS funding. The hospice included 54 inpatient beds and the Drapers’ Wing had 16 ‘bed sitting rooms’ for elderly people. A teaching unit was now under construction. By 1970, some 400 patients died at the hospice each year, and between 40 to 60 patients were discharged home, at least for a short time. Soon, the majority of patients had their first encounter with the hospice’s services in their own homes.
At the same time, plans for other hospices modelled substantially upon St Christopher’s were beginning to emerge—in Sheffield, Manchester, Worthing, and elsewhere in the United Kingdom. There was a constant flow of communication between the staff of St Christopher’s and others across the United Kingdom with similar aspirations. As this collectivity of enthusiasm developed, policymakers began to take a closer interest in the subject, and the first national symposium on the care of the dying was held in London in November 1972, with the proceedings published in the British Medical Journal.44
A paper by Cicely Saunders that appeared in 1968 in a Catholic quarterly elegantly captured St Christopher’s orientation to care for those in the last stages of life.45 It called for a positive approach that sees this as a time not of defeat, but of life’s fulfilment, recognizing that there will be many different paths to life’s ending. Here comfort and care become the prominent aims in a ‘middle way’ between too much and too little treatment, where understanding and compassion are vital. In subsequent years and first articulated in the American paper of 1966, we see in Saunders’s thinking a growing attention to notions of personhood, particularly in the family context. This greater focus on families was regarded as an important distinction between care at St Christopher’s and earlier work at St Joseph’s. The emphasis on person speaks in turn of a growing influence from psychology and theology. Saunders was increasingly interested in how the person is seen always as someone in interrelationship 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. Elsewhere, 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.’46
Nevertheless, such caring, it was acknowledged, could be costly to those who gave it. At St Christopher’s, emphasis was placed upon the development of a multidisciplinary team that 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 of volunteers, as well as the children of staff, and the elderly residents living in the Drapers’ Wing. A sense of community was fostered that might serve to ameliorate the emotional consequences of work involving constant exposure to loss, sorrow, and bereavement. In this context, attention was needed to support the staff and this was fostered at St Christopher’s through small-group discussion, and the regular involvement and psychiatric perspective of Colin Murray Parkes.
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 euthanasia. Saunders drafted two chapters in the group’s report.47 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 highest standard, 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. A few years later, Cicely Saunders was active in commenting on and expressing opposition to Baroness Wootton’s Incurable Patients Bill, which came to the House of Lords in 1976, and about which Saunders feared the right to die might be interpreted by some as a duty to do so. Likewise, 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 legalization of euthanasia were defeated. Her position was clear: euthanasia is not a matter of desisting from active treatment; it is a killing act and the person who requests it has been failed in some way by others. She did acknowledge, however, that both sides in the euthanasia debate have a vendetta against pointless pain and impersonal indignity, although their solutions were radically different in character.
1. Psychosocial studies of grief and bereavement
2. Evaluation of St Christopher’s approach in relation to other care organizations
3. Pharmacological work on the relative merits of different narcotics and their management48
These endeavours marked a consolidation of the work by the early founders of modern terminal care in the late 1950s and early 1960s.49 Nevertheless, in a 1973 volume on health services research, the state of this emerging field could be stated quite starkly: ‘The position of terminal care in this country is at present unsatisfactory.’50 Although interest in research into terminal care was growing, much of it remained descriptive and anecdotal, and high quality work was desperately needed to promote a rational approach to the care of the dying. Small achievements could be significant, as when Cicely Saunders was asked to write a chapter on terminal care for a volume on the scientific foundations of oncology,51 the editors thought it necessary to justify their reasons for including a contribution from such an underdeveloped medical field, where scientific foundations were only just being laid.
By 1978, some important evidence was emerging from research studies conducted at St Christopher’s. Work by Colin Murray Parkes showed that unrelieved pain, as reported later by families, was found among 8 per cent of patients at St Christopher’s Hospice, compared to 20 per cent of those in local hospitals and 29 per cent of those being cared for at home.52 Building on the work of the St Christopher’s research fellow, Dr Robert Twycross, it was also possible to state beyond reasonable doubt that morphine had become the preferred analgesic over diamorphine, and that the previously much heralded mixtures containing alcohol and cocaine should be discontinued.53 We shall learn more of this work in Chapter 5.
Cicely Saunders could also observe that 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’.43 The photographs that she used in her lectures and publications illustrated the importance of welcoming patients and the involvement of the staff’s own children in the life of the hospice. Patients were encouraged to write about their experiences in prose and poetry; others made drawings and paintings that served as a window on suffering. Such an approach was also fostered through the sense of St Christopher’s as a community in which many who served felt supported by some form of religious commitment.
By 1976, Nursing Times was publishing a revised and updated set of Cicely Saunders’s articles that had originally appeared in 1959 and had caused so much interest at that time.54 There was a sense that the field of terminal care was beginning to consolidate. There were opportunities to review changes that had occurred over the previous 17 years and to address new debates and issues, such as ‘living wills’, ‘furore therapeutics’, and ‘meddlesome medicine’. By now, the increasing use of the term palliative care, coined by Balfour Mount in 1974, 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 introduction of the term has been well documented.55 Inspired by reading the works of Elizabeth Kübler-Ross and Cicely Saunders, the Montreal-based surgeon Balfour Mount had visited St Christopher’s in 1974 and been impressed by what he saw there. On his return to the Victoria Hospital, however, he found himself unconvinced by the term ‘hospice’, which in French Canada had overtones of an impoverished and undignified home for the moribund. He pondered on an alternative term that might find wider applicability. His ruminations on the issue soon bore fruit.
And I remember thinking that, as I considered various options, I was actually shaving one morning and thought that if there are intensive care units and coronary care units and surgical intensive care units, there could be a palliative care unit. That seemed to have a nice ring to it; and a palliative care service. I wasn’t at that point too sure about the etymology of the word ‘palliative’ but I liked the concept. Of course to palliate at that point was in common usage, meaning to treat for goals other than cure, and particularly locally we talked about palliative radiation therapy, and it was simply meant that it was acknowledged to be non-curative. And so that took me to the Oxford English Dictionary and to a little search into the origins of the term and to the Latin word pallium, to cloak and to hide and so forth and so on. And it seemed to me that it passed from ‘to cloak or to hide’ to ‘to improve the quality of’, and that seemed to be exactly what it was that we were trying to do. So it seemed to me a perfect term… One of the advantages of getting in on the ground floor of something is you can shape it anyway you want and tell people: ‘This is the way it needs to be done’ and you have some advantage. I wrote Robert Twycross and perhaps Cicely, but certainly Robert’s response I remember very clearly: he wrote back immediately to say, ‘I do not like your term palliative, it won’t do at all,’ and proceeded to give me a critique as to why it wouldn’t do. And as I recall Cicely’s reaction to the term initially was not very positive as well, but later she wrote a letter to say, you know, ‘I have to say I was wrong, the term is excellent.’56
It seems that Saunders adopted the term rather quickly. Within a few years of Mount’s original visit to St Christopher’s, she was using it freely in her own writing and referring to the Montreal palliative care unit as its source. It was a significant step. The terminology had now changed and the focus of care had moved beyond its original locus, that of the hospice, to encompass other settings.
In 1978, Cicely Saunders’s first book—which many had awaited for so long—finally appeared. It was an edited volume, with contributors who had been involved directly with the work of St Christopher’s. Her first 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 system.53 By the early 1980s, she was at even greater pains to suggest that the ‘terminal’ condition of a patient may not be an irreversible state,57 and ‘active’, ‘palliative’, and ‘terminal’ care could each be seen as overlapping categories.
The professional and clinical achievements of these years, however, cannot be allowed to mask the organizational issues and difficulties that also had to be overcome. There were losses and stresses that from time to time affected the whole of St Christopher’s. In 1970, Dr Ron Welldon, the hospice’s first research fellow, suddenly died, the news reaching Saunders just as she was about to give a lecture in the United States. The following year, the death of Lord Thurlow after a period of illness marked the loss of a chairman in whom she had great confidence and who had been such a support to her in the hospice’s formative years. There was also unwelcome publicity following the screening on German television of a film about the hospice. There were periodic financial crises, including a major one in 1974. In addition, some visitors to the hospice, on writing about their experiences, were critical about staff morale and the management culture, some describing it as authoritarian and inflexible, and concerned only for the patients and not for the staff. Yet, in 1979 a foundation group at St Christopher’s that was formed to review the early statement of Aim and Basis drafted by Olive Wyon could find little reason for any significant reorientation.
In 1980, St Christopher’s held its first international conference. It was characterized as the hospice’s Bar Mitzvah and involved participants from 17 different countries.58 The contributions contained a growing conviction that the work of hospice should be integrated with general medical practice, forming a complementary resource and service. There was now an expanding confidence that the ideas and influences developed in the world of charitable hospices were beginning to affect the mainstream healthcare system.
Following a rather dramatic religious experience in the 1940s, Cicely Saunders had moved in Christian evangelical circles for several years, yet she was also at ease in the Roman Catholic ambience of St Joseph’s Hospice. She was inclined to worship intently and to read widely. Her personal beliefs and ideas about religion were central to her plans for St Christopher’s. It is through the evolving sense of a personal calling that we see this most visibly. Strongly evidenced in her early correspondence about the idea of St Christopher’s, where many passages refer to a sense of being drawn by God to this work, within a few years it was as if the whole project had taken on a sense of something predetermined and part of a greater purpose. The nurturing of the oft-repeated phrase of David Tasma—‘Let me be a window in your home’—contributed to this. It was akin to a ‘foundation myth’ that served constantly to reinforce the origins and purpose of the hospice. There is a sense in which if David Tasma had not existed, it might have been necessary for her to invent him. Yasmin Gunaratnum has written eloquently about David Tasma and Cicely Saunders. She shows how ‘the dark coordinates’ of his life have been left unexamined in the build-up of oft-repeated anecdotes about him. Why did Cicely Saunders have recourse to an outsider, a migrant, for the formation of her thinking? Did he serve as a foreign founder whose timely departure from the narrative prevented him becoming disruptive and unruly? As Gunaratnum explains: ‘In bringing David Tasma’s fractured story with her into the public domain, it has been put into a relation with injustices suffered by other dying people, allowing pain to be many things, weighty in its historical content, but not without company.’59
In this context, there could be no straightforward and simplistic blueprint for the hospice and the ‘window’ it contained. The precise character of St Christopher’s religious status had required careful consideration. Undoubtedly, St Christopher’s became an organization of Christian motivation; but in opting for a strategy of practical action in the world, rather than an ethic of caring located outside it, Saunders and her colleagues gave birth to an idea capable of wide adaptation and development across many cultures and settings.
It is now clear that during the years leading up to 1967, the hospice movement was already in formation. The opening of St Christopher’s in July of that year should be seen not as the start of the modern hospice initiative, but 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 1968, between the ages of 40 and 50, Cicely Saunders had undertaken a remarkable personal project. Harnessing her own faith, her private sorrows, her professional skills, and her indomitable energies, she had gathered around her the support of friends and colleagues who, with her, made St Christopher’s Hospice possible.
These years inevitably made huge demands on her personal resources. A life devoted to giving also needs to receive support and nourishment, both through the realm of faith or meaning, and in relationships with others. Cicely Saunders was capable of prodigious quantities of work at this time, but she could also be vulnerable to illness. A life lived in the public domain needs to foster some private areas for reflection, recuperation, and intimacy. In 1968, Cicely Saunders’s mother died in St Christopher’s; she had remained active up to the end, and it was a loss that could be accepted by her daughter. However, just over two years after the hospice opened, there was a long period of sick leave for its founder, from the autumn of 1969 to March 1970.
From 1963 onward, her relationship with the artist Marian Bohusz-Szyszko had been developing, slowly and intermittently. He was born in Poland in 1901 and had studied fine art and painting at the universities of Wilno and Cracow, and at the Warsaw Academy of Fine Arts. He spent most of World War II as a prisoner of war before making his way to Italy in 1945. Subsequently he settled in London, where in the autumn of 1963 he held a major retrospective at the Drian Galleries in Porchester Place. Here his work had come to the attention of Cicely Saunders. She fell in love with the 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 was 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, but over time, a suitable solution evolved. In 1969, Cicely Saunders moved from Lambeth to Sydenham to live closer to the hospice. There, with Polish friends of Marian, she purchased a house where the two couples could share accommodation. They thought of it as their ‘kibbutz’, and it was to prove a lasting domestic arrangement. In 1975, Marian’s wife died, but it was not until 1980, 17 years after they had first met, that Cicely Saunders and Marian Bohusz-Szysko married. She was 61 and he 79. At first, their news was kept secret to all but a tiny group of close friends, but gradually it became public and delighted many. Her last five years as the hospice medical director were spent as a married woman. Secure in her status, she had never been so content with her personal life.
Between 1967 and 1985, Cicely Saunders produced, individually and with others, around 85 publications; they appeared in several languages and in numerous countries.5,60 She wrote for clinical journals and prestigious textbooks, for religious publications, and for the wider public. Three clinical and organizationally oriented books on hospice and palliative care appeared, and one of them was soon produced in a second edition. There was also a collection of poems and prose pieces produced for patients, families, and professionals encountering suffering and disease—an early example of a contribution to the medical humanities as an aid to teaching.61 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-fertilization of ideas.
Over this period, there was also growing reflection on the state of the ‘movement’, which was developing around hospices and similar centres. As her work matured, Saunders reflected more on the early origins of homes and hospices for the dying. She also had increasing evidence that palliative care was something that could be developed in many modes and settings—extended beyond its initial successes with cancer patients to include those with non-malignant conditions, such as motor neurone disease, and in due course, the challenge of caring for people with AIDS. Above all, its major purpose came to be seen as the improvement of care within the mainstream setting, not through the continuing proliferation of hospice units, many of them independent charitable organizations, but rather through education and training, and the broader diffusion of appropriate knowledge, skills, and attitudes. Accordingly, we see at this time the first discussions taking place about the creation of national representative bodies to promote the interests of hospices and those who work with them, such as Help the Hospices and the Association of Palliative Medicine.
Of course, St Christopher’s Hospice had a vital role to play. Initially it was the only centre for specialized education and training in the new field of terminal care. There was 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. By 1975, there were 2 000 visitors per annum; special hours were set aside for visitors each week, and in due course, some tours were conducted in French. However, some enthusiasts could be a cause of irritation, and Saunders was not well disposed to those who made extravagant journeys to St Christopher’s at the expense of overlooking growing expertise nearer to home.62
There were also many people who wished Cicely Saunders would come to them. In her years as medical director, she visited North America around a dozen times, developing close professional links as well as an enduring friendship with Balfour Mount and the palliative care service at the Victoria Hospital, Montreal, and at the international conference that he hosted every two years starting in 1976. She 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 increasingly acknowledged as the ‘founder’ of the modern hospice movement.
It is apparent that Cicely Saunders did not see her vision as something that could only be bounded by the discipline of medicine. The concept of ‘total pain’, for example, which she formulated in her writings of the late 1950s and early 1960s, adopted a wide-ranging definition of suffering, taking into account physical, emotional, psychological, social, and spiritual elements (see Chapter 5). These were to be addressed through the combined skills of a multidisciplinary team of carers, including volunteers, with active attention to family involvement. In seeking to establish a foundation outside the parameters of the British National Health Service in the form of an independent, charitable hospice, Saunders also displayed scepticism about the ability of the mainstream healthcare system to foster her ambitions. In the early 1980s, looking back on the period described here, she again recalled David Tasma’s reference to the window: ‘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 …’58
Moving out meant establishing an inpatient hospice followed by a homecare service that would become a centre for the development of three activities: clinical care, teaching, and research. In Britain, others quickly followed along similar lines, although few combined these three elements at the same level. In the United States and elsewhere, the ideas were developed and adapted according to local context and quite quickly a separate trajectory emerged for ‘hospice’ based on homecare and a federal system of funding. The notion of ‘community’ developed in the St Christopher’s model was elaborated in various ways. The multidisciplinary team became emblematic of hospice care; there was 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 organization. At St Christopher’s, which served as the locus of an international movement for many years, the idea of community remained important and continued to be worked through in various ways.
The real importance of the early thinking that led to St Christopher’s, however, is evident in what was decided against. The ideas not pursued and those allowed to recede are themselves significant. In particular, it was confirmed that this would not be an endeavour located in a narrow evangelical wing of the Church of England, where the primary purpose would be to proselytize. Nor was it to be a new religious community where a dedicated few, operating outside of the secular world, would care for the dying in their own special way. Instead, it became a foundation underpinned by the Christian religion, where the contributions of various disciplines were also fostered; where critical reflection through research and teaching could take place; and where others came to develop their own ideas and skills. Without such omissions and commissions, it is difficult to envision the subsequent development of the international hospice-palliative care movement. The success of the vision, as defined, notwithstanding its Christian focus, was that it could be emulated or elaborated, and this made possible its global spread in the following years. It was also the engine for the initial articulation of a new field of medicine—one with the potential to develop its own separate interests and skills, which would gain wider recognition from the medical establishment, as we shall see in Chapters 5 and 6.
1. Cameron Morris J (1959). The management of cases in the terminal stages of malignant disease. St Mary’s Hospital Gazette, 65(4):4–6.
2. Graeme P, Muras H, Yale R (1961). The terminal care of the cancer patient. St Mary’s Hospital Gazette, 67(4):118–125.
3. Saunders C (1962). Working at St Joseph’s Hospice, Hackney. Annual Report of St Vincent’s, Dublin, pp. 37–9.
4. Clark D (1998). Originating a movement: Cicely Saunders and the development of St Christopher’s Hospice, 1957–67. Mortality, 3(1):43–63.
5. Clark D (1998). An annotated bibliography of the publications of Cicely Saunders–1. 1958–67. Palliative Medicine, 12(3):181–93.
6. Clark D (2002). Cicely Saunders. Founder of the Hospice Movement: Selected Letters 1959–1999. Oxford: Oxford University Press; Clark D (2006). Introduction. In: Saunders C (ed.). Selected Writings 1958–2004, pp. xiii–xxvii. Oxford, UK: Oxford University Press.
7. Saunders C (1981). The founding philosophy. In: Saunders C, Summers D, Teller N (eds.). Hospice: The Living Idea, p. 4. London, UK: Edward Arnold.
8. Saunders C (1958). Dying of Cancer. St Thomas’s Hospital Gazette, 56(2):37–47.
9. Clark D (1999). ‘Total pain’, disciplinary power, and the body in the work of Cicely Saunders, 1958–1967. Social Science & Medicine, 49:727–36.
10. Du Boulay S (1994). Cicely Saunders: The Founder of the Modern Hospice Movement, rev. ed. London, UK: Hodder and Stoughton.
11. Wyon O (1963). Living Springs: New Religious Movements in Western Europe. London, UK: SCM Press.
12. Cicely Saunders, letter to Olive Wyon, 4 March 1960.
13. Cicely Saunders, letter to Christopher Saunders, 30 August 1960.
14. Betty West, letter to Cicely Saunders, 11 February 1960.
15. Cicely Saunders, letter to Olive Wyon, 6 December 1960.
16. Rosetta Burch, letter to Cicely Saunders, 16 June 1960.
17. Cicely Saunders, letter to Olive Wyon, 11 June 1964.
18. St Christopher’s Hospice Aim and Basis (1964). Mimeograph, revised.
19. Saunders C (1959a). Care of the dying 1. The problem of euthanasia. Nursing Times (9 October):960–1; Saunders C (1959b). Care of the dying 2. Should a patient know …? Nursing Times (16 October):994–5; Saunders C (1959c). Care of the dying 3. Control of pain in terminal cancer. Nursing Times (23 October):1031–2; Saunders C (1959d). Care of the dying 4. Mental distress in the dying. Nursing Times (30 October):1067–9; Saunders C (1959e). Care of the dying 5. The nursing of patients dying of cancer. Nursing Times (6 November):1091–2; Saunders C (1959f). Care of the dying 6. When a patient is dying. Nursing Times (19 November):1129–30.
20. Saunders C (1960). The management of patients in the terminal stage. In: Raven R (ed.). Cancer, vol 6, pp. 403–417. London, UK: Butterworth and Company.
21. Hospice History Project: Mary Baines interview with Neil Small, 10 July 1996.
22. Saunders C (1967f). St Christopher’s Hospice. British Hospital Journal and Social Service Review, 77:2127–30.
23. Saunders C (1963). Report of Tour in the United States of America (Spring), unpublished.
24. King’s College. Archive Catalogues: Saunders, Dame Cicely. Available at http://www.kingscollections.org/catalogues/kclca/collection/s/10sa88-1, accessed 7 July 2014.
25. Feifel H (1959). The Meaning of Death. New York, NY: McGraw-Hill.
26. Hospice History Project: Florence Wald interview with Neil Small, 29 February 1996.
27. Buck J (2009). ‘I am willing to take the risk’: Politics, policy, and translation of the hospice ideal. Journal of Clinical Nursing, 18(19):2700–9.
28. Cicely Saunders, letter to Esther Lucille Brown, 16 February 1965.
29. Frankl V (1962). Man’s Search for Meaning. Boston, MA: Beacon.
30. Esther Lucille Brown, letter to Cicely Saunders, 30 November 1965.
31. Esther Lucille Brown, letter to Cicely Saunders, 17 November 1966.
32. Glaser B, Strauss A (1965). Awareness of Dying. Chicago, IL: Aldine.
33. Saunders C (1966). Unpublished text of lecture at Yale School of Nursing (28 April).
34. Kübler-Ross E (1969). On Death and Dying. London, UK: Routledge.
35. Hospice History Project: Colin Murray Parkes interview with David Clark, 10 January 1996.
36. Saunders C (1964). Death. The Living Church, 26 (July):8–9.
37. Saunders C (1965). The last stages of life. American Journal of Nursing, 65(3):70–5.
38. Saunders C (1966). Terminal patient care. Geriatrics, 21(12):70–4.
39. Saunders C (1969). 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, pp. 49–78. Cleveland, OH: Case Western Reserve University Press.
40. Robert Kastenbaum, letter to Cicely Saunders, 13 October 1966.
41. Saunders C (1966). A medical director’s view. Psychiatric Opinion, 3(4):28–34.
42. Hospice History Project: Tom West interview with Neil Small, 28 January 1997.
43. Saunders C (1971). 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, pp. 33–46. Proceedings of the Fourth National Symposium, 15–16 October 1970. New York, NY: Cancer Care.
44. Saunders C (1973). A death in the family: A professional view. British Medical Journal, 1(844):30–1.
45. Saunders C (1968). The last stages of life. Recover (Summer):26–9.
46. Saunders C (1972). A therapeutic community: St Christopher’s Hospice. In: Schoenberg B, Carr AC, Peretz D, Kutscher AH (eds.). Psychosocial Aspects of Terminal Care, pp. 275–89. New York, NY and London, UK: Columbia University Press.
47. Saunders C (1975). Member of Church of England Board of Social Responsibility Working Party. On Dying Well: An Anglican Contribution to the Debate on Euthanasia. London, UK: Church Information Office.
48. Saunders C (1967). The Management of Terminal Illness. London, UK: Hospital Medicine Publications Limited.
49. Clark D (1999). Cradled to the grave? Terminal care in the United Kingdom, 1948–67. Mortality, 4(3):225–47.
50. Saunders C, Winner A (1973). 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, pp. 19–25. Nuffield Provincial Hospitals Trust. London, UK: Oxford University Press.
51. Saunders C (1976). The challenge of terminal care. In: Symington T, Carter R (eds.). The Scientific Foundations of Oncology, pp. 673–9. London, UK: Heinemann.
52. Murray Parkes C (1979). 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, 55:517–22.
53. Saunders C (1978). Appropriate treatment, appropriate death. In: Saunders C (ed.). The Management of Terminal Malignant Disease. London, UK: Edward Arnold.
54. Saunders C (1976). Care of the dying—1. The problem of euthanasia. Nursing Times, 72:1003–5.
55. Mount B (1997). The Royal Victoria Hospital Palliative Care Service: A Canadian experience. In: Saunders C, Kastenbaum R (eds.). Hospice Care on the International Scene. New York, NY: Springer.
56. Hospice History Project: David Clark with Balfour Mount, 14 March 2001.
57. Saunders C (1981). Current views on pain relief and terminal care. In: Swerdlow M (ed.). The Therapy of Pain, pp. 215–41. Lancaster, PA: MTP Press.
58. Saunders S, Summers D, Teller N (1981). Hospice: The Living Idea. London, UK: Edward Arnold.
59. Gunaratunum Y (2013). Death and the Migrant: Bodies, Borders and Care. London, UK: Bloomsbury.
60. Clark D (1999). An annotated bibliography of the publications of Cicely Saunders—2. 1968–77. Palliative Medicine, 13:485–501.
61. Saunders C (1983). Beyond All Pain: A Companion for the Suffering and Bereaved. London, UK: SPCK.
62. Clark D (2001). A special relationship: Cicely Saunders, the United States, and the early foundations of the hospice movement. Illness, Crisis, and Loss, 9(1):15–30.