Hospice pioneer Cicely Saunders championed better end-of-life care by acknowledging the emotional impact of a terminal diagnosis. The idea was launched on the world exactly 50 years ago, in 1964,  in a landmark publication. Dame Cicely Saunders defined total pain as the suffering that encompasses all of a person's physical, psychological, social, spiritual and practical struggles. It was entitled Beyond all Pain. This reached full expression with the concept of ‘total pain’, which was taken to include physical symptoms, mental distress, social problems and emotional difficulties. However, it is unheard of to think that in the 21st century there are still people who only see pain as a symptom without providing multidimensional relief to their countries. Lancaster: MTP Press.  |  2007 May;8(5):430-8. doi: 10.1016/S1470-2045(07)70138-9. Adopting current ideas about the social theory of the body, 'total pain' may be formulated either as a nomenclature of inscription, or as a nomenclature of facilitation. 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’. It also noted that the use of mixtures containing alcohol and cocaine should be discontinued. She brightened visibly and they both laughed at their hair “all gone white.” I see this as evidence of Cicely Saunders’ recognition of “total pain” as combination of physical, emotional, social, and spiritual aspects, requires multifaceted treatment. Trained initially in nursing and social work, she qualified in medicine in 1958 and subsequently dedicated the whole of her professional life to improving the care of the dying and bereaved people. 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]. 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). [xviii] Saunders, C and Baines, M (1983) Living with Dying: the management of terminal disease. Patients' experiences of eHealth in palliative care: an integrative review. 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. 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. Schnoeller TJ, Ghazal AA, Jentzmik F, Mueller J, Schrader M, Schrader AJ. This paper addresses these issues through a specific case study of the early writings of Cicely Saunders in the period 1958-1967. Dame Cicely Saunders is not well known as a nursing theorist, but is undoubtedly worthy of her recognition as the founder of the modern hospice movement. Interesting-But total pain as stated can be very unique to individuals, I call it the finger print of emotions. Robert Twycross – as I have shown elsewhere on this blog – demolished the prevailing method of relieving pain in the 1970s. […] work of Cicely Saunders and the maturing concept.University of Glasgow End of Life Studies blog. J Palliat Med. So far there have been few empirical studies which focus on how ideas and practices about pain are changing in modern healthcare. In 1959 she could note: ‘Much of our total pain experience is composed of our mental reaction …’[ii] . 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. 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] . This site uses Akismet to reduce spam. I could have cried for the pills and injections although I knew I shouldn’t. 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. From here the concept of 'total pain' is formulated, to include physical, psychological, social, emotional and spiritual elements. Powered by WordPress & WPstart Theme. EDITOR—Dame Cicely Saunders defined the concept of total pain as the suffering that encompasses all of a person's physical, psychological, social, spiritual, and practical struggles. 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] . American Pain Society Bulletin. To broaden our view, to see the whole picture, this is how all persons must be seen. 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. 2020 Jan 15;19(1):9. doi: 10.1186/s12904-019-0508-4. It is not unreasonable to view the concept of ‘total pain’ as a major element within the conceptual armamentarium of the new discipline. prepare food, bathe herself, make even basic decisions) escalate her anxiety and depression. She is best known for her role in the birth of the hospice movement, emphasizing the importance of palliative care in modern medicine. 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. [x] Saunders, C. (1967) The Management of Terminal Illness. Well…there is a good chance the “pain” is not just physical pain. It reflected important truths learned in a quarter of a century of close attention to the suffering of dying patients. doi: 10.5812/aapm.99229. Saunders introduced the idea of "total pain", which included physical, emotional, social, and spiritual distress. It was later quoted extensively within the palliative care literature, becoming emblematic of the whole principle of care within the emerging specialty: 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]. Is the voluntary refusal of food and fluid an alternative to assisted dying? 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. Anesth Pain Med. [xiii] Saunders, C (1970b) An individual approach to the relief of pain. Learn how your comment data is processed. Dame Cicely Saunders, key contributor to the modern hospice movement, coined the term ‘‘total pain’’ and suggested that pain be understood as having physical, psychological, social, emotional, and spiritual compo- nents.9The combination of these elements is believed to result in a ‘‘total pain’’ experience that is individu- alized and specific to each patient`s particular situation. Here she cites examples from studies conducted between 1954 and 1978 which give evidence of unrelieved terminal pain. Dame Cicely Saunders coined the term ‘‘total pain’’ and suggested that pain can be understood as having physical, psychological, social, emotional, and spiritual components. [viii] Saunders, C. (1966) The care of the dying. She examines how in the care of the individual in pain, there must be attention to the body, to the family, and to the patient's inner life. […]. Epub 2012 Nov 29. 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. The reduction of suffering and pain is a [iii] Saunders, C. (1960) Drug treatment in the terminal stages of cancer. Pain was acknowledged to be a problem still inadequately tackled in the patient’s own home or in a busy general hospital ward. She was credited for introducing the idea of “total pain” through which she gave equal importance to physical, emotional, social and spiritual distress. 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’. Cecil made an outstanding work in this field and her approach to the patients give us lights whit this ilntegrated management and point of view. the whole concept and findings of this can not be overly emphasized. Saunders emphasized focusing on the patient rather than the disease and introduced the notion of ‘total pain’, which included psychological, spiritual, emotional, intellectual, and interpersonal aspects of pain, the physical aspects, and even financial and bureaucratic aspects. People and Cancer. [xvii] Saunders, C (1981) Current views on pain relief and terminal care. Published for the Nuffield Provincial Hospitals Trust by. Retrieved 22 June 2018. Improving quality in colon and rectal surgery through palliative care. A professional training in the three disciplines of nursing, social work and medicine, coupled with a strong personal religious faith, provided the biographical context for the development of Cicely Saunders' concern with pain. Likewise it posed greater challenges than could be overcome by the technologies of regular administration of pain relief. Post was not sent - check your email addresses! The goal is to improve quality of life for both the person and their family. BMC Palliat Care. The notion that chronic pain presents particular challenges to the clinician is regularly stated in her work at this time. Her inability to function, that is to care for herself, i.e. [xii] Saunders, C (1970a) Nature and management of terminal pain. Dame Cicely Mary Saunders, OM, DBE, FRCS, FRCP, FRCN (22 June 1918 – 14 July 2005) was a prominent Anglican nurse, social worker, physician and writer, involved with many international universities. Saunders introduced the idea of "total pain," which included the physical, emotional, social, and spiritual dimensions of distress. Control of pain in terminal cancer. i must learn to recognize each sign early enough to truly help my patient through these difficult times. Founding St Christopher's Hospice in London in 1967, she encouraged a radical new approach to end of life … In JJ Bonica and V Ventafridda eds Advances in Pain Research Vol 2, New York: Raven Press. At this stage we have the idea of ‘total pain’ in a weaker, more preliminary, sense than was to emerge within a few years. National Center for Biotechnology Information, Unable to load your collection due to an error, Unable to load your delegates due to an error. Current Medicine and Drugs 1(1) July, 16-28. NLM BMC Palliat Care. By attention to all aspects of such pain, the possibility of its relief comes in sight. We see the maxim oft repeated: ‘constant pain needs constant control’. HHS [xi] Saunders, C (1969) The moment of truth: care of the dying person. COVID-19 is an emerging, rapidly evolving situation. 2003 Jan;9(1):19-23. doi: 10.12968/ijpn.2003.9.1.11041. What is “Total Pain”? ↑ Saxon, Wolfgang (31 July 2005). Victorian legacies and death in the contemporary age, Reflections on the Scottish Partnership for Palliative Care Annual Conference 2015 | End of life studies, In the time of Covid – ‘April is the cruellest month’ | Discover Society, Attending to patients’ spiritual needs at the end of life: Exploring the physician’s role | EAPC Blog, http://endoflifestudies.academicblogs.co.uk/total-pain-the-work-of-cicely-saunders-and-the-maturing-…(accessed, The Brompton Cocktail: 19th century origins to 20th century demise - by David Clark, ‘Total pain’: the work of Cicely Saunders and the maturing of a concept, Open access to 'Watch with Me' by Cicely Saunders. 2012 Dec;43(6):403-8. doi: 10.1055/s-0032-1327700. ↑ Evans, Natalie (22 June 2018). Dame Cicely Saunders coined the term "total pain" … Epub 2020 Oct 2. She said that her objective was to alleviate pain, but it was not long before she realized that pain was more than physical. Hospice care is a philosophy of care that focuses on the palliation of a terminally ill patient’s symptoms & pain, and attends to their emotional and spiritual needs. eCollection 2020 Apr. 2020 Nov;31(4):100783. doi: 10.1016/j.scrs.2020.100783. Your email address will not be published. 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. 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. [xvi] Saunders, C (1979) The nature and management of terminal pain and the hospice concept. pain of the soul is the hardest pain to treat than physical pain , when the mind can ignore the body pain but can not withstand the deep aches and weeping of the soul. TOTAL PAIN Total pain is a holistic experience that extends beyond the physiological domain and was first introduced by Dame Cicely Saunders in the 1960’s. She developed and instituted the concept of caring for the whole person and providing comfort and dignity until the end of life. In E F Shotter ed Matters of Life and Death. Pain first emerged as an area of clinical specialisation in the 1950s, but more recently has attracted wider interest from social scientists and clinicians who seek to expand its understanding to incorporate ideas about meaning, embodiment and culture. So far there have been few empirical studies which focus on how ideas and practices about pain are changing in modern healthcare. Palliative care, including the use of medicine, can reduce pain and help a dying person claim the spiritual side of her life. In M Swerdlow The Therapy of Pain. So the use of drugs is not simply a matter of technique but also the expression of a commitment between one person and another. 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]. BMC Palliat Care. It is about Mrs Hinson, a patient cared for at St Joseph’s Hospice, Hackney. Oxford: Oxford University Press. [Palliative care and medicamentous therapy during the final episode of life]. Please enable it to take advantage of the complete set of features! Along came COVID and her social connections, purpose/value in life diminished as well. Mod til at bevæge og blive bevæget i hverdagen på […] Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care. 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] . It’s amazing to see the evolution of the concept of pain from symptom to disease. © End of life studies. Hospital Medicine Publications Ltd, London. USA.gov. Control of pain in terminal cancer. 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. 1 Coyle also wrote that a diagnosis of a life threatening illness jars open a door of awareness, 2 the same door that, for most of our lives, comfortably allows us to keep thoughts … 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]. [i] Clark, D (1999) ‘Total pain’, disciplinary power and the body in the work of Cicely Saunders, 1958-1967. [xiv] Saunders, C and Winner, A (1973) Research into terminal care of cancer patients. 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. 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’. [iv] Saunders, C. (1966) The care of the dying. Through these influences we find in her work with dying patients an emphasis on pain as a key which unlocks other problems and as something which requires multiple interventions for its resolution. Semin Colon Rectal Surg. An example iof emotional/spiritual treatment is her book, “Beyond All Pain.”, Very interesting topic of palliative care, because it will decrease people who are long suffering due to circumstances..and it will bring hope to patients and health workers, Palliative care is a very important part of medicine and the combination of physical and mental pain management is ideal for patients with chronic pain, or end-stage pain. The entire concept is eye-opening. [xv] Saunders, C (1976a) The challenge of terminal care. The in-depth analysis carried out had the objective of verifying if "the way" of Cicely to understand, live and propose palliative care was still current and "beautiful", so that we can nowadays refer to her fascinating "Original Palliative Care". Cicely Saunders, global approach, palliative care, total pain 1 Clinical Epidemiology Unit, Istituto per lo Studio, la Prevenzione e la Rete Oncologica, Firenze, Italy I am currently witnessing the social/emotional/spiritual pain of a family member, whose anxiety and depression are overwhelming her ability to function.. 2005 Jan;29(1):2-13. doi: 10.1016/j.jpainsymman.2004.08.008. [ii] Saunders, C. (1959) Care of the dying 3. Guy’s Hospital Gazette 80, 136-142. A series of patients’ pictures was particularly telling. The Cicely Saunders Institute; Chapter 7 Dame Cicely; Part 2 Interest in Palliative Care. 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. When considering Cicely Saunders’ writing on ‘total pain’ and related subjects, several publications in the period 1968-85 merit our attention. Would you like email updates of new search results? [vi] Saunders, C. (1964) Care of patients suffering from terminal illness at St Joseph’s Hospice, Hackney, London. Get the latest public health information from CDC: https://www.coronavirus.gov, Get the latest research information from NIH: https://www.nih.gov/coronavirus, Find NCBI SARS-CoV-2 literature, sequence, and clinical content: https://www.ncbi.nlm.nih.gov/sars-cov-2/. First coined by Cicely Saunders in 1964, the descriptor ‘total pain’ encapsulated her awareness that the patients she cared for often experienced a complex form of pain that entwined physical, psychological, social and spiritual dimensions. It was therefore important to demonstrate to the public that pain can be avoided. 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. He is Professor of Medical Sociology at the University of Glasgow and founder of the Glasgow End of Life Studies Group. Dame Cicely Saunders, the founder of the hospice movement, coined the phrase ‘total pain’, describing it as ‘the division of a whole experience into physical, emotional, social and spiritual components’ (Saunders and Sykes, 1993). 2020 Apr 21;10(2):e99229. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients' descriptions of pain. In 1988, Cicely Saunders published a journal article on spiritual pain, reproduced here. It entered into the fabric of daily life at the hospice and became a defining feature of its philosophy and approach. In T Symington and R Carter eds The Scientific Foundations of Oncology. The life of Cicely Saunders and the concept of ‘total pain’ ved professor David Clark, Glasgow End of Life Studies group, University of Glasgow. Note here that chronic pain can only be defined as mental pain, without coexisting physical pain, Your email address will not be published. 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]. Guy’s Hospital Gazette 80, 136-142. As early as 1959 she had acknowledged that pain in this sense could not be relieved solely through analgesics[ix]. Nursing Times. London: Dartman, Longman and Todd, 15-26, p15. 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. 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. Cicely Saunders was a renowned nurse, physician and social worker. Follow David on Twitter @dumfriesshire Total care i praksis. Dame Cicely Saunders was very humble about her accomplishments. A Brief Review on the Relationship Between Pain and Sociology. ↑ "A holistic approach to pain". [vii] Saunders, C. (1964) The symptomatic treatment of incurable malignant disease. Int J Palliat Nurs. What was helpful was a “facetime” call from a childhood friend, who also has some age related disabilities. In this sense pain has become something indivisible from both the body and the wider personality. This quote is from Dame Cicely Saunders (1918-2005), founder of the modern hospice movement. 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. Professor Helle Timm, REHPA byder velkommen til REHPA-seminar om begrebet ‘total pain’ og helhedsorienteret lindring i praksis. London: The British Council, 34-38. 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. 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]. Nursing Times October 23, 1031-1032, p1032. Despite the fact that pain can be controlled, poor pain relief continues to be a challenge in palliative care.The lack of clarity in how to understand pain for this population contributes to the persistence of poor pain management. yes, i agree, each individual feels total pain completely different. 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. The developing programme of the DHSS in health services research. [ix] Saunders, C. (1959) Care of the dying 3. It also reflected a willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Awareness of this concept is important in all caring situations. A nurse, social worker and doctor, she established new methods of pain control and a multi-faceted, holistic approach to care giving. Religion, medicine, and community in the early origins of St. Christopher's Hospice. 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. From margins to centre: a review of the history of palliative care in cancer. "Total pain: the work of Cicely Saunders and the hospice movement". J Pain Symptom Manage. 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’. [v] Saunders, C. (1965) Telling patients. Prescribers’ Journal 4(4), October, 68-73. 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. Pain is one of the most common and distressing symptoms described by palliative cancer patients. The notion that chronic pain presents particular challenges to the clinician is regularly stated in her work at this time. Yet another forceful reminder that breathlessness, or any other physical symptom a patient may be going through, cannot be seen in isolation. It’s not just the difficulty in breathing that matters, it’s the psychological, social and emotional trauma breathlessness brings to the person, which she called ‘total breathlessness’, that deserves attention. 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. This paper addresses these issues through a specific case study of the early writings of Cicely Saunders in the period 1958–1967. Both pronouncements followed the work of Robert Twycross and Ronald Melzack. 2020 Oct 14;19(1):158. doi: 10.1186/s12904-020-00667-1. In L Pearson (ed) Death and Dying: Current issues in the treatment of the dying person. Nursing Times October 23, 1031-1032. Cicely Saunders is universally acclaimed as a pioneer of modern hospice care. Cleveland: The Press of Case Western Reserve University, 49-78. However, Dame Cicely Saunders changed the way that the medical profession, and society in general, viewed care for the dying at a time when the only treatment generally offered was pain relief. David Clark holds a Wellcome Trust Investigator Award and leads the Global Interventions at the End of Life research project. According to Dame Cicely Saunders, there are multiple facets of pain that can all manifest in the form of physical pain: A reflection on Cicely Saunders' views on a good death through the philosophy of Charles Taylor. […] of palliative care became more apparent than ever before. London: SPCK. Nursing Mirror 14 February, vii-x. 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’. Total pain - palliative care. Portfolio for Health 2. The opening of this paper highlights the value of ‘careful assessment’ harnessed to a ‘positive approach’ in treating the symptoms of malignant terminal disease. This paper is aimed at focusing on the writings and the experience of the Hospice movement Founder, Dame Cicely Saunders. The same chapter made the important point for those countries in which diamorphine is unavailable, that morphine is the preferred analgesic of the two . http://endoflifestudies.academicblogs.co.uk/total-pain-the-work-of-cicely-saunders-and-the-maturing-…(accessed 9 June […]. 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]. Here patients’ paintings and drawings, case histories and research were all used to develop her argument. This concept, which proved so important to the development of hospice clinical practice, is shown to have paradoxical and conflicting implications. Lancet Oncol. A striking feature of Cicely Saunders’ early work was its articulation of the relationship between physical and mental suffering. NIH Indeed, it may well be judged as one of the most innovative concepts yet to emerge from the field of palliative care. Just as Cicely Saunders used physical pain as a window to recognise and deal with ‘total pain’. This site needs JavaScript to work properly. The New York Times. A good listener, she paid systematic attention to patient narratives.  |  By 1967 a new conceptualisation of pain had emerged: ‘Pain demands the same analysis and consideration as an illness itself. 10 (4): 13–15. 'Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958-1967 Pain first emerged as an area of clinical specialisation in the 1950s, but more recently has attracted wider interest from social scientists and clinicians who seek to expand its understanding to incorporate ideas about meaning, embodiment and culture.

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