A striking feature of Cicely Saunders’ early work was its articulation of the relationship between physical and mental suffering. This reached full expression with the concept of ‘total pain’, which was taken to include physical symptoms, mental distress, social problems and emotional difficulties. The idea was launched on the world exactly 50 years ago, in 1964, in a landmark publication.
There can be little doubt that when Cicely Saunders first used this term she was in the process of bequeathing to medicine and healthcare a concept of enduring clinical and conceptual interest. It emerged from her unique experience as nurse, social worker and physician – the remarkable multi-disciplinary personal platform from which she launched the modern hospice and palliative care movement. It also reflected a willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, it was tied to a sense of narrative and biography, emphasising the importance of listening to the patient’s story and of understanding the experience of suffering in a rounded way. This was an approach which saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution.
Robert Twycross – as I have shown elsewhere on this blog – demolished the prevailing method of relieving pain in the 1970s. Cicely Saunders, for her part, created a radically new approach to conceptualising pain.[i]
The inseparability of physical pain from mental processes is alluded to by Cicely Saunders even in some of her earliest publications. In 1959 she could note: ‘Much of our total pain experience is composed of our mental reaction …’[ii] . At this stage we have the idea of ‘total pain’ in a weaker, more preliminary, sense than was to emerge within a few years. Here it is a general descriptor, indicating that there may be several layers which have to be understood in order to have a full grasp of the problem of pain in the terminally ill. The specific context of this understanding is the stage of illness ‘when all curative and palliative measures have been exhausted’[iii]. This moment, at which modern medicine typically states that ‘there is nothing more to be done’[iv], thus becomes the starting point for an emergent medicine of terminal care, central to which is a multi-facetted understanding of pain. This is a medicine concerned also for the meaning of pain. So she can write: ‘A cry just to be rid of pain is not worthy of man … Man by his very nature finds that he has to question the pain he endures and seek meaning in it’ . And it is this medicine which also allows ‘the yoke of materialistic values’ to be broken by an approach to suffering which sees in it an opportunity for the finest human sentiments to shine through.
In this sense pain has become something indivisible from both the body and the wider personality. So it can be observed that ‘The body has a wisdom of its own and will help the strong instinct to fight for life to change into an active kind of acceptance that may never be expressed in words’[v]. The following narrative, from a 1964 paper in Nursing Mirror, describes for the first time the key elements of what came to be viewed as ‘total pain’. It is about Mrs Hinson, a patient cared for at St Joseph’s Hospice, Hackney. It was later quoted extensively within the palliative care literature, becoming emblematic of the whole principle of care within the emerging specialty:
|One person gave me more or less the following answer when I asked her a question about her pain, and in her answer she brings out the four main needs that we are trying to care for in this situation. She said, “Well doctor, the pain began in my back, but now it seems that all of me is wrong.” She gave a description of various symptoms and ills and then went on to say, “My husband and son were marvellous but they were at work and they would have had to stay off and lose their money. I could have cried for the pills and injections although I knew I shouldn’t. Everything seemed to be against me and nobody seemed to understand.” And then she paused before she said, “But it’s so wonderful to begin to feel safe again.” Without any further questioning she had talked of her mental as well as physical distress, of her social problems and of her spiritual need for security[vi] (p. viii)|
Total pain fully defined
That same year, 1964, in a paper for The Prescribers’ Journal the phrase ‘all of me is wrong’ is used more formally to introduce the concept of ‘total pain’ in its stronger and definitional sense: to include physical symptoms, mental distress, social problems and emotional problems[vii]. The opening of this paper highlights the value of ‘careful assessment’ harnessed to a ‘positive approach’ in treating the symptoms of malignant terminal disease. Although often overlooked by writers of subsequent publications about pain and palliative care, this is the foundational piece in which ‘total pain’ is fully described by Saunders for the first time.
In a 1966 paper a patient being admitted to St Joseph’s used the phrase: ‘It was all pain’ and the author observed that this ‘”total pain”’ calls us to analyse, to assess and to anticipate’[viii] . As early as 1959 she had acknowledged that pain in this sense could not be relieved solely through analgesics[ix]. Likewise it posed greater challenges than could be overcome by the technologies of regular administration of pain relief. By 1967 a new conceptualisation of pain had emerged: ‘Pain demands the same analysis and consideration as an illness itself. It is the syndromes of pain rather than the syndromes of disease with which we are concerned [x].
In the early years at St Christopher’s Hospice, whci she foudned i 1967, the concept of ‘total pain’ was further elaborated – by researchers, clinicians, and patients themselves. It entered into the fabric of daily life at the hospice and became a defining feature of its philosophy and approach. By the year 1985, when Cicely Saunders retired from the full-time role of Medical Director at St Christopher’s to become its Chairman, palliative medicine was just two years away from specialty recognition in the United Kingdom. It is not unreasonable to view the concept of ‘total pain’ as a major element within the conceptual armamentarium of the new discipline. Indeed, it may well be judged as one of the most innovative concepts yet to emerge from the field of palliative care.
Maturing of the concept
When considering Cicely Saunders’ writing on ‘total pain’ and related subjects, several publications in the period 1968-85 merit our attention. The notion that chronic pain presents particular challenges to the clinician is regularly stated in her work at this time. In particular it is seen as a problem on the level of meaning, for such pain can be timeless, endless, meaningless, bringing a sense of isolation and despair[xi]. This is in stark contrast to the acute pain, familiar in teaching hospitals, which so often is seen as purposive – for example in the diagnostic process as an indicator of problems, or post-operatively as a staging post on the road to recovery. An important chapter published in 1970 describes chronic pain as ‘not just an event, or a series of events … but rather a situation in which the patient is, as it were, held captive’[xii] . In terminally ill patients a major challenge is to avoid the onset of such pain by active strategies of prevention, in particular the regular giving of strong analgesia in anticipation of, rather than in response to, the onset of pain. We see the maxim oft repeated: ‘constant pain needs constant control’. At the same time the value of listening is also emphasised, as in the patient who said ‘the pain seemed to go by just talking’. Indeed terminal pain can be regarded as an illness in itself. So the use of drugs is not simply a matter of technique but also the expression of a commitment between one person and another.
Crucially, Saunders saw the relief of pain as the most vital component in confronting the issue of euthanasia; for pain in the final stages of cancer is something which attracted the imagination of the public and is a regular theme in public debate[xiii]. It was therefore important to demonstrate to the public that pain can be avoided. The use of moderate doses of strong opiates is a core feature of this, for example in the 1970s only 10% of patients cared for at St Christopher’s Hospice needed a maximum dose of more than 30mg of diamorphine. Moreover it was found that by providing physical relief, opportunities then arose for communicating with the patient on a much deeper level, not least on the complex issue of what to tell about the prognosis.
By 1973 it had become possible to refer in published writing to some of the research work on pain being carried out at St Christopher’s Hospice[xiv]. Pain was acknowledged to be a problem still inadequately tackled in the patient’s own home or in a busy general hospital ward. One of the problems is that the constant pain of terminal cancer is not alleviated by earlier teachings to the effect that doses of narcotics should be spaced as widely as possible in order to avoid the onset of dependence. Fears about dependence also limit the availability of morphine and of diamorphine in some countries and double blind trials at St Christopher’s were designed to shed light on the relative merits of the two drugs. Another problem was that of titration, largely seen as a subjective process, though by 1976 it was possible to refer to the use of radioimmunoassay as a method for measuring the level of drugs in the body, thus allowing Robert Twycross’s research to show that the use of opiates with terminally ill patients does not escalate continually and may even decline[xv]. By now it was becoming clear from the work of Twycross that there was no observable clinical difference between morphine and diamorphine, though the latter was more favoured for injection because of its greater solubility.
Evidence of growing recognition for Cicely Saunders’ approach can be seen in the invitation to contribute to one of the volumes on research edited by international pain experts John Bonica and Vittorio Ventafridda, published in 1979[xvi]. Here patients’ paintings and drawings, case histories and research were all used to develop her argument. A series of patients’ pictures was particularly telling. They show the feelings of being impaled by a red hot iron, of total isolation from the world, the implacable heaviness of pain, or in one case the feeling that ‘I am a scrap heap’. Another woman who had experienced a year of relentless pain from carcinoma of the pancreas drew it as a small rodent eating into the side of a tree trunk; the few traces of green at the top were described as ‘my life trying to get through’. By attention to all aspects of such pain, the possibility of its relief comes in sight. So, rather unusually, Cicely Saunders was able to state here: ‘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’ (1979:637). It is further argued that good care of this kind can also 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 another substantial chapter appeared from Saunders’ pen, this time in Mark Swerdlow’s collection The Therapy of Pain [xvii]. Here she cites examples from studies conducted between 1954 and 1978 which give evidence of unrelieved terminal pain. By contrast data on 3362 patients cared for by St Christopher’s between 1972-77 showed that only 1% had continuing pain problems, though more than three quarters presented to the hospice with such problems. The achievement of these 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 the need for formal staff support is acknowledged and described, it is argued that ‘The resilience of those who continue to work in this field is won by a full understanding of what is happening and not by a retreat behind a technique’. The same chapter made the important point for those countries in which diamorphine is unavailable, that morphine is the preferred analgesic of the two . It 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. Three years later, having established the preference for morphine it was possible to discuss new techniques for its administration: through both slow release formulation and the use of the syringe driver[xviii].
Contributing to the field
There was now a growing confidence within the world of hospice and palliative care that the complex and multi-layered symptoms associated with terminal pain could be attended to effectively by a combination of the well informed use of drugs and a sophisticated understanding of the emotional, spiritual and social problems which might 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 Cicely Saunders published at this time a small volume which contained poems, prayers and other writings selected to help those facing life threatening illness[xix] . Her selections included work by concentration camp survivor and founder of logotherapy, Viktor Frankl; by the theologians Teilard 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. It reflected important truths learned in a quarter of a century of close attention to the suffering of dying patients. It was entitled Beyond all Pain.
[i] 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.
[ii] Saunders, C. (1959) Care of the dying 3. Control of pain in terminal cancer. Nursing Times October 23, 1031-1032, p1032.
[iii] Saunders, C. (1960) Drug treatment in the terminal stages of cancer. Current Medicine and Drugs 1(1) July, 16-28.
[iv] Saunders, C. (1966) The care of the dying. Guy’s Hospital Gazette 80, 136-142.
[v] Saunders, C. (1965) Telling patients. District Nursing September, 149-154.
[vi] Saunders, C. (1964) Care of patients suffering from terminal illness at St Joseph’s Hospice, Hackney, London. Nursing Mirror 14 February, vii-x
[vii] Saunders, C. (1964) The symptomatic treatment of incurable malignant disease. Prescribers’ Journal 4(4), October, 68-73.
[viii] Saunders, C. (1966) The care of the dying. Guy’s Hospital Gazette 80, 136-142.
[ix] Saunders, C. (1959) Care of the dying 3. Control of pain in terminal cancer. Nursing Times October 23, 1031-1032.
[x] Saunders, C. (1967) The Management of Terminal Illness. Hospital Medicine Publications Ltd, London.
[xi] 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. Cleveland: The Press of Case Western Reserve University, 49-78.
[xii] Saunders, C (1970a) Nature and management of terminal pain. In E F Shotter ed Matters of Life and Death. London: Dartman, Longman and Todd, 15-26, p15.
[xiii] Saunders, C (1970b) An individual approach to the relief of pain. People and Cancer. London: The British Council, 34-38.
[xiv] Saunders, C and Winner, A (1973) Research into terminal care of cancer patients. Portfolio for Health 2. The developing programme of the DHSS in health services research. Published for the Nuffield Provincial Hospitals Trust by
[xv] Saunders, C (1976a) The challenge of terminal care. In T Symington and R Carter eds The Scientific Foundations of Oncology. London: Heinemann.
[xvi] Saunders, C (1979) The nature and management of terminal pain and the hospice concept. In JJ Bonica and V Ventafridda eds Advances in Pain Research Vol 2, New York: Raven Press.
[xvii] Saunders, C (1981) Current views on pain relief and terminal care. In M Swerdlow The Therapy of Pain. Lancaster: MTP Press.
[xviii] Saunders, C and Baines, M (1983) Living with Dying: the management of terminal disease. Oxford: Oxford University Press.
[xix] Saunders, C (1983) Beyond All Pain: A companion for the suffering and bereaved. London: SPCK.