Publications
APS Bulletin • Volume 10, Number 4, July/August 2000
History of Pain
Marcia Meldrum, PhD
Total Pain: The Work of Cicely Saunders and the Hospice Movement
David Clark, PhD
There can be little doubt that when Cicely Saunders first used the term “total pain” in the early 1960s, she was in the process of bequeathing to medicine and health care a concept of enduring clinical and conceptual interest. In recent years we have gained a clear picture of the early evolution of the notion of total pain (Clark, 1999). Certainly, it emerged from Cicely Saunders’ unique experience as nurse, social worker, and physician—the remarkable multidisciplinary platform from which she launched the hospice movement. It also reflected her willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of suffering in a multifaceted way. This was an approach that saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Thus was formulated the idea of total pain as incorporating physical, psychological, social, emotional, and spiritual elements (Saunders, 1964).
In 1967, Cicely Saunders and her colleagues opened St. Christopher’s Hospice, the world’s first modern hospice, where they combined clinical care, teaching, and research, seeking to achieve a “middle way” between too much and too little treatment. Over the following years, researchers, clinicians, and patients themselves helped to elaborate the concept of total pain at St. Christopher’s Hospice. I shall briefly trace some of this development here, up to the year 1985, when Cicely Saunders retired as full-time medical director of the hospice to become its chair. Two years later, in 1987, palliative medicine was recognized as a specialty in the United Kingdom; total pain may reasonably be viewed as a major element within the conceptual armamentarium of the new discipline.
Several of Cicely Saunders’ publications in the period 1968–1985 are particularly relevant to the development of total pain.
The notion that chronic pain presents particular challenges to the clinician is a regular theme in Cicely Saunders’ writings. In particular, she described it as a problem of meaning, for such pain can be timeless, endless, meaningless, bringing a sense of isolation and despair (Saunders, 1969). This is in stark contrast to the acute pain familiar in teaching hospitals, which so often is seen as purposive—for example, in the diagnostic process as an indicator of problems, or during the postoperative period as a staging post on the road to recovery. In her important chapter on terminal pain in the 1970 book Matters of Life and Death, Cicely Saunders described chronic pain as “not just an event, or a series of events but rather a situation in which the patient is, as it were, held captive” (Saunders, 1970a). In terminally ill patients, where the major challenge is to use active strategies of prevention to avoid the onset of such pain, she advocated in particular the regular giving of strong analgesia in anticipation of, rather than in response to, the onset of pain. Her oft-repeated maxim was “constant pain needs constant control.”
At the same time, Cicely Saunders emphasized the value of listening, as when she wrote of the patient who said “the pain seemed to go by just talking.” Terminal pain in her work is regarded as an illness in itself. The use of drugs is not simply a matter of technique, but also the expression of a commitment between one person and another.
Crucially, Cicely Saunders’ writings at this time treated the relief of pain as a most vital component in confronting the issue of euthanasia; for pain in the final stages of cancer had attracted the imagination of the public and had become a regular theme in public debate (Saunders, 1970b). It was therefore important to her to demonstrate to the public that pain can be prevented. The use of moderate doses of strong opiates given regularly was a core feature; for example, she pointed to the fact that, in the 1970s, the maximum dose of diamorphine (heroin) needed by 90% of patients cared for at St. Christopher’s Hospice was 30 mg or less. Moreover, she and her staff had learned that by providing adequate physical relief, they found opportunities for communicating with the patient on a much deeper level, not least on the complex issue of giving a full prognosis.
By 1973, it had become possible for Cicely Saunders to refer in her published work to some of the research on effective pain management being carried out at St. Christopher’s Hospice (Saunders & Winner, 1973). Pain remained a problem inadequately handled in the patient’s own home or in a busy general hospital ward. Many terminal cancer patients suffered constant pain because their physicians and nurses had been taught to use widely spaced doses of narcotics to prevent the onset of dependence. Fears about dependence limited the simple availability of morphine and diamorphine in many countries. At St. Christopher’s Hospice, Cicely Saunders and her colleague Robert Twycross conducted double-blind trials to shed light on the relative merits of the two drugs and studied the problem of titration, largely seen up to this time as a subjective process, based on the physician’s intuition.
By 1975, however, radioimmunoassay methods had made accurate measurement of the level of drugs in the body possible; this innovation enabled Twycross to demonstrate that opioid usage by terminally ill patients does not escalate continually and may even decline (Aherne et al., 1975; Saunders, 1976a). Building on this finding, Robert Twycross showed clearly that there was no observable clinical difference between morphine and diamorphine, though the latter drug was favored for injection because of its greater solubility (Twycross, 1977). As a result, Cicely Saunders called into question the value of the famous Brompton mixture (Saunders, 1976b; Clark, 1999), which had been a prominent feature of her earlier writings.
The publication of Cicely Saunders’ first book in 1978 was an opportunity for her to restate and elaborate the concept of total pain for a wider readership. She also took the opportunity to reply to Professor Wayne Proudfoot’s criticism (Proudfoot, 1976) that the concept implied avoidance at all costs of the negative emotions associated with terminal pain. The problem seems to have been the use of the word pain to describe social, emotional, and spiritual, as well as physical, phenomena. Saunders pointed out that, “The use of the word ‘pain’ was a deliberate attempt to stimulate students and others to look at the various facets of a dying patient’s distress, beyond the requirement for analgesics to the need for human understanding and practical social help” (Saunders, 1978a). Inattention to such issues and prolongation of unrelieved pain, she argued in a paper that same year (Saunders, 1978b), could prevent patients from achieving their wishes in the last year of life. Here she drew on the work of Colin Murray Parkes to show that only 8% of patients who died in the hospice reported experiencing pain, compared with 20% of those in hospital and 29% of those at home.
By 1978, there was growing recognition for Cicely Saunders’ approach, as evidenced by the invitation of international pain experts John Bonica and Vittorio Ventrafridda to contribute to Advances in Pain Research (Saunders, 1979). Here she used patients’ paintings and drawings, case histories, and research to develop her argument. A series of patients’ pictures was particularly telling. They made visual the feelings of being impaled by a red hot iron, the sense of total isolation from the world, the implacable heaviness of pain, in one case the feeling that “I am a scrap heap.” Another woman who had experienced a year of relentless pain from carcinoma of the pancreas drew it as a small rodent eating into the side of a tree trunk; the few traces of green at the top were described as “my life trying to get through.” If the physician or nurse gives attention to all aspects of such pain, the possibility of its relief comes in sight. Cicely Saunders stated, “Vital signs in a ward specializing in the control of terminal pain include the hand steady enough to draw, the mind alert enough to write poems and to play cards, and above all the spirit to enjoy family visits and spend the last weekends at home” (Saunders, 1979). She argued further that good care of this kind can be delivered in a variety of settings and is not dependent upon the availability of an inpatient hospice facility.
At the beginning of the 1980s, she contributed another substantial discussion, this time in a chapter of Mark Swerdlow’s collection The Therapy of Pain (Saunders, 1981). Here she cited examples from studies conducted between 1954 and 1978, each giving evidence of patients suffering unrelieved terminal pain. By contrast, data on 3,362 patients cared for by St. Christopher’s Hospice between 1972–1977 showed that only 1% reported continuing pain problems, though more than three quarters had presented to the hospice with pain. Cicely Saunders recognized that the achievement of such results, however, can occasion the phenomenon of staff pain, resulting from prolonged exposure to the suffering of patients and families who are facing death. Although she acknowledged and described the need for formal staff support, she argued that “The resilience of those who continue to work in this field is won by a full understanding of what is happening and not by a retreat behind a technique” (Saunders, 1981).
In the same paper, Cicely Saunders made the important point (for the majority of countries in which diamorphine is unavailable) that morphine is in most cases the preferred analgesic of the two. She also noted that the use of mixtures containing alcohol and cocaine should be discontinued. Both pronouncements followed the work of Robert Twycross and Ronald Melzack (Melzack, Mount, & Gordon, 1979). Three years later, with the preference for morphine well established, she was able to discuss new techniques for its administration: through slow release formulation and the use of the syringe driver (Saunders & Baines, 1983).
There was now a growing confidence within the world of hospice and palliative care that the complex and multilayered symptoms associated with terminal pain could be managed effectively by a combination of the well-informed use of narcotics and a sophisticated understanding of the emotional, spiritual, and social problems that could also occur. By the mid-1980s total pain had become firmly established as a central concept within the emerging palliative care specialty and was proving a useful concept in clinical work, in teaching, and (to a lesser extent) in research. Interesting then, that at this time Cicely Saunders published a small volume that contained poems, prayers, and other writings selected to help those facing life-threatening illness (Saunders, 1983). Her selections included work by the concentration camp survivor and founder of logotherapy, Viktor Frankl; by the theologians Teilhard de Chardin and Olive Wyon; by the English writers John Bunyan and D.H. Lawrence; as well as by some patients from St. Christopher’s Hospice. This little book, Beyond All Pain, reflected the important truths she had learned in a quarter of a century of close attention to the suffering of dying patients.
References
Aherne, GW, Marks, V., Morris, B.A., Piall, E.M., Robinson, J.D., & Twycross, R.G. (1975). Proceedings: The measurement of serum morphine levels by radioimmunoassay following oral administration of diamorphine or morphine. British Journal of Pharmacology, 54(2), 228P–229P.
Clark, D. (1999). “Total pain,” disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Social Science and Medicine, 49, 727–736.
Melzack R., Mount B.M., & Gordon, J.M. (1979). The Brompton mixture versus morphine solution given orally: Effects on pain. Canadian Medical Association Journal, 120(4), 435–438.
Proudfoot, W. (1976). Commenting on “Living with dying,” Saunders, CM. Man and Medicine, 1, 246.
Saunders, C. (1964). Care of patients suffering from terminal illness at St. Joseph’s Hospice, Hackney, London. Nursing Mirror, 14 February, vii–x.
Saunders, C. (1969). The moment of truth: care of the dying person. In L. Pearson (Ed.), Death and dying: Current issues in the treatment of the dying person (pp. 49–78). Cleveland: The Press of Case Western Reserve University.
Saunders, C. (1970a). Nature and management of terminal pain. In E.F. Shotter (Ed.), Matters of life and death (15–26). London: Dartman, Longman and Todd.
Saunders, C. (1970b). An individual approach to the relief of pain. People and cancer (34–38). London: The British Council.
Saunders, C. (1976a). The challenge of terminal care. In T. Symington & R. Carter (Eds.), The scientific foundations of oncology. London: Heinemann.
Saunders, C. (1976b). Care of the dying-4. Control of pain in terminal cancer. Nursing Times, 72(29): 133–135.
Saunders, C. (1978a). The philosophy of terminal care. In C. Saunders (Ed.) The management of terminal disease. London: Edward Arnold.
Saunders, C. (1978b). Patient care: an introduction. In D.W. Vere (Ed.) Topics in therapeutics 4. London: Pitman Medical.
Saunders, C. (1979). The nature and management of terminal pain and the hospice concept. In J.J. Bonica & V. Ventafridda (Eds.) Advances in pain research: Vol. 2. New York: Raven Press.
Saunders, C. (1981). Current views on pain relief and terminal care. In M. Swerdlow (Ed.) The therapy of pain. Lancaster: MTP Press.
Saunders, C. (1983). Beyond all pain: A companion for the suffering and bereaved. London: SPCK.
Saunders, C., & Baines, M. (1983). Living with dying: the management of terminal disease. Oxford: Oxford University Press.
Saunders, C., & Winner, A. (1973). Research into terminal care of cancer patients. Portfolio for health 2. The developing programme of the DHSS in health services research (19–25). Published for the Nuffield Provincial Hospitals Trust by the Oxford University Press.
Twycross, R. (1977). Choice of strong analgesic in terminal cancer: Diamorphine or morphine? Pain, 3(2), 93–104.
David Clark is professor of medical sociology, codirector of the Sheffield Palliative Care Studies Group, and director of the Hospice History Project at the University of Sheffield, in Sheffield, England.