Cicely Saunders—Founder of the Hospice Movement: Selected Letters 1959-1999

‘The main duty of one who edits another's letters,’ writes Professor David Clark, ‘is to intrude as little as possible upon what they have to tell us.’ In editing the letters of Dame Cicely Saunders he sets out his conditions of working with such clarity that it is appropriate to begin a review by considering his own contribution.

Clark has constructed his narrative from copies of some 700 letters out of a total of about 7000. The choice is his own and there is no abridging or editing of the texts. They cover a wide range of subject matter and they are directed to an equally wide range of recipients. The replies are not published. Footnotes offer biographical and other details. Clark has grouped the letters into three roughly equal sections—Realizing a Vision (1959-1967), The Expansive Years (1968-1985) and An Exacting Joy (1986-1999). Each is introduced by a brief editorial essay which provides professional and biographical contexts for the letters that follow. Confronted by this virtual ‘materials and methods’ section, the reader may feel that Clark is sometimes almost too self-effacing. A few letters tend to be repetitive with respect to details; some of the issues under discussion are not wholly clear and occasionally left unresolved; a few individuals are unidentified. But such criticisms are infrequent and minor, and the general reservations that readers may feel when confronted by ‘selected’ letters—from any author and on any subject—are dispelled here by Clark's scrupulous approach. The life and activities of Dr Saunders are well known, but an account drawn from her correspondence is uniquely authoritative and gives important insights into the motives, concepts and strategies which gave rise to the modern hospice movement and to the specialty of palliative medicine.

‘Realizing a Vision’ begins in 1959, eleven years after the inception of the National Health Service. Resources for the care of patients dying with advanced cancer were minimal at this time. A few institutions provided ‘dedicated custodial care... virtually untouched by medical advance’ (1987). Recognizing this fundamental deficiency, Dr Saunders set out to rectify it. On the basis of her own extensive clinical observations, she was able to establish several therapeutic principles—notably, the regular use of analgesics, given orally if possible and at doses titrated to each patient's needs. The emphasis was on prevention of pain or at least its substantial amelioration. Potential complications of drug tolerance, drug dependence and excessive sedation were not encountered. Other common symptoms were identified and appropriate therapeutic management was devised. Two main tenets underlie this work. First, unremitting attention to the individual patient: ‘... the importance of knowing each patient and their reactions to their pain and/or discomfort’ (1959) and ‘... it is looking at the patient that will teach us how to care for the dying...’ (1969). Secondly, the need to use drugs according to strict pharmacological principles which provide the basis for rational clinical practice. When Dr Saunders became physician to St Joseph's Hospice, Hackney, in 1958 she was also clinical research fellow in the pharmacology department at St Mary's Hospital. More sophisticated analyses of the pain experienced by her patients were to follow and the notion of ‘total pain—a combination of physical symptoms, mental distress, social problems and spiritual needs’ (1964)—emerged.

The experience gained in Hackney was of prime importance when Dr Saunders started to plan a new hospice. Like St Joseph's, it was to be mainly, but not exclusively, for patients with advanced cancer. A 10-page document—The Scheme—was drawn up, a practical affair with details of building design, staffing levels, capital and revenue costs and contractual arrangements. The religious background was also discussed and was, indeed, always a central issue: ‘... my spiritual odyssey is... tied up with the whole project’ (1960). The document was cautiously circulated to potentially interested individuals, and the process of funding, organizing and building the new hospice got under way. A name—St Christopher's Hospice—was proposed in 1959. ‘I am not displeased with the way things are going’ Dr Saunders wrote in 1960, freely admitting (to another correspondent) that ‘... I have never been so importunate in all my life and find it has provided a very good dividend’.

Despite organizational setbacks and recurrent financial difficulties, additional ideas for the future hospice were emerging all the time: home care, an outpatient clinic, family and respite care, a research programme. All of them were to feature in the new hospice. An important first trip to the United States in 1963 began the international contacts which were to grow so widely. Dr Saunders' activity during these years is astonishing. Ornithologically minded readers will enjoy Dr Saunders' rather surprising image of herself as resembling ‘that small and diligent wader, the turnstone, who bustles up the beach turning over every stone it meets to find what lies underneath’ (1961). Everyone, irrespective of any interest in birds, will endorse a remark made by one of her medical tutors: ‘her industry is overpowering’. St Christopher's was opened in 1967 but, as Clark shrewdly remarks, ‘this event should be regarded not as the start of the modern hospice movement, but rather as the conclusion of the first phase of its development’.

‘The Expansive Years 1968-1985’ cover the time when Dr Saunders was Medical Director of St Christopher's. The period was certainly expansive but it was one in which previous ideas were tested and modified, and new approaches were developed. Several previous schemes were now realized—a home-care service, an outpatient department, a family and bereavement service, a day-care centre. The research programme was set up, and a teaching centre and a hospice information service followed. One striking development was the increasing number of patients whose disease became stabilized and were deemed suitable for more active modes of treatment: ‘... the way back to the acute care system should always be open’ (1979); ‘... the traffic of a hospice is not always one way’ (1981). One guaranteed way to evoke a vigorous response from Dr Saunders was to imply that St Christopher's was solely a house for the dying: ‘... we do not want some kind of “abandon hope” invisibly over the door’ (1972).

The critical mass of expertise, built up at St Christopher's, began to stimulate interest in the establishment of hospices and hospice teams in other parts of the country and abroad. Much of Dr Saunders' contemporary correspondence deals with this topic. ‘There are no short cuts’ she wrote in 1971, and her approach to enquirers was rigorous. St Christopher's should not be taken as some invariant prototype. Are you sure, she asked, there is a genuine need for a hospice in your area, and where is the evidence? Do you have organizational, financial and contractual bases sufficient for both short- and longer-term activities? What are your staffing requirements? And have you, after all that, considered alternative approaches which do not involve separate buildings at all, nor even separate wards within a general hospital? This was particularly pertinent because the 1970s saw the introduction of specialist support teams operating within teaching and general hospitals but without designated beds. The teams were initially developed in New York, Montreal and London. At the same time a home-care team with no beds was established in New Haven, Connecticut. Dr Saunders regarded these innovations as ‘... one of the most exciting hospice developments’ (1979).

The modern hospice movement was developing rapidly during this time and Dr Saunders was inundated with requests to lecture and teach all over the world. Civil and academic honours accumulated and gave her great satisfaction. Visitors came to St Christopher's in increasing numbers, and some were less than considerate —‘... only a psychologist without clinical responsibility could ask a Medical Director to take him round a hospital over Christmas’ (1972)—though the offender was offered two alternative dates. A point of repose was reached in 1980 when she married Professor Marian Bohusz-Szyszko.

Despite so many achievements, this period was not one of uniform success and advance. There were recurrent financial crises within St Christopher's, ‘We have always lived hand to mouth’ (1982), and transient difficulties with staff. The hospice was not always a Johnsonian ‘nest of singing birds’—how could it be?—and Dr Saunders conceded that people might develop ‘battle fatigue’ (1988). The quality of hospice care was still variable nationally and she grimly quoted a family doctor: ‘We can only send our patients to [a named institution] when they are becoming unconscious and we can reassure the families that they will not realize where they are going’ (1975). Some sections of the medical profession remained sceptical and Dr Saunders was predictably annoyed by an opinion published in the British Medical Journal in 1984 that ‘several questions need to be answered... if the era of well-intentioned amateurism is to be succeeded by hard-headed professionalism’.

For the final period—‘An Exacting Joy (1986-1999)’—Dr Saunders was Chairman of St Christopher's. Certain general matters emerged during this time though some of them had earlier origins. St Christopher's had always included a small group of patients with severe chronic conditions other than cancer, such as motor-neuron disease. The question of hospice care for patients with advanced AIDS arose in 1985 and the discussions continued for another two years. AIDS patients with complicating malignancies presented no overwhelming extra problems, but the appropriate setting for the treatment of patients with advanced disease without superimposed cancer proved more contentious. The issues were complex, and the correspondence on this topic is particularly interesting.

The growing numbers of hospices and hospice teams in the UK prompted various administrative questions: how best to fund and coordinate their activities on a national basis and how to secure their most effective integration with other health resources? This last point had exercised Dr Saunders for several years: one of the main aims of work at St Christopher's, she had noted in 1979, was that ‘... basic principles in teaching and research [should be] fed back into the health service’. Vigorous correspondence ensued and three bodies were eventually set up—Help the Hospices (1984), The Association of Palliative Medicine (1985) and the National Council for Hospice and Specialist Palliative Care Services (1991). The importance of recognizing palliative care as a specialty had been urged by Dr Saunders for a considerable time—‘you really need just about everything except for obstetrics and sports medicine’ she observed in 1980—and formal accreditation by the Royal College of Physicians and the Royal College of General Practitioners was granted in 1987. The specialist journal Palliative Medicine appeared in the same year and, in an important letter to the editor, Dr Saunders listed eight topics suitable for research in a hospice setting, apparently a controversial idea in some quarters.

Honours continued, culminating in an OM in 1989, but Dr Saunders' external activities became increasingly curtailed by the failing health of her husband. The letters, however, reflect ‘her continuing attention to long-standing friendships’ to quote David Clark. Marian Bohusz-Szyszko died in 1995 and Dr Saunders resumed for a time her international travel; visits to Eastern Europe were particularly important to her.

Two aspects of Dr Saunders' life which are of central importance to her have not yet been noted here. The first is her lifelong preoccupation with arguments against voluntary euthanasia, an area where her views have never changed. By contrast, her thoughts about the most appropriate spiritual contexts for hospice-based care have clearly not remained fixed. This is a difficult area to comment on but, reading the whole sequence of letters, you gain the impression that she favours an inclusive approach: ‘... we are a group of the unalike’ she wrote in 1988 and produced a strikingly apt quotation to the effect that ‘... some should, all may but none must’.

In his introduction to the book, Professor Balfour Mount observes that Dame Cicely's letters ‘have helped to shape medical history’. Rephrasing might, however, be considered: her letters are medical history.