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COURTESY OF AVRIL JACkSON Perspective

important advance in end-of-life care that has to be on diamorphine. Those who were sick ever been made. It comes, of course, from and drowsy we judged to be on morphine. In Cicely herself. To understand its importance, fact, we were right 50% of the time! The trial we have to go back to medical practice in the was then started with 700 patients entering 1950s and 1960s, when it was generally over two years. On completion, when the data believed that strong opioids were only effective were analysed, they showed that there was no when given by injection and that tolerance significant difference between them. 2 Cicely and addiction would inevitably occur if they Saunders’ impression was wrong. Of course, were given regularly. So, in practice, patients we too have impressions but, like her, we were given injections of morphine but only should be keen to have them tested out – even when their pain became unbearable. if we too are proved wrong. If you had joined our ward round in the The revolution in symptom control early years, you would have found that the Cicely Saunders had seen the value of regular most common word used was ‘why’. ‘Why is oral morphine in a small London home for this patient having this particular pain?’; the dying that she often visited. After ‘Why has his breathlessness suddenly become qualifying, she obtained a research much worse?’; and, relating to my own special scholarship to study pain control in terminal interest, ‘Why has this patient with proven illness and she went to St Joseph’s Hospice , intestinal obstruction stopped vomiting?’. where she was allowed to put her ideas into This last question was fascinating. We practice. She was permitted only four patients admitted many patients who had had an to start with because of the fear that regular ‘open and close’ operation for intestinal giving caused addiction! But, to the surprise obstruction and nothing could be done. We and delight of the staff, these patients became treated them simply, with a combination of So the practice painfree and remained alert. So the practice of analgesics, anti-emetics and antispasmodics of giving a giving a strong opioid by mouth, regularly and with no nasogastric tube, and the vomiting strong opioid in adequate doses became accepted at the either stopped or was reduced to once a day by mouth, hospice. When Cicely Saunders left with no nausea. In addition, sometimes, after regularly and St Joseph’s, she had carefully documented weeks, the bowels opened. Why was this? in adequate records of over 1,000 patients dying of What was happening? It had never been doses became cancer – quite a series. The first research described before. accepted at project in what was to become palliative care. 1 Fortunately, when St Christopher’s was the hospice The strong opioid used at St Christopher’s at designed, Cicely Saunders included a post- the beginning and listed in the hospice’s mortem room and we had a senior symptom control leaflet is diamorphine or pathologist, Richard Carter, from the Royal heroin, because it was widely believed to be Marsden Hospital, who came to perform superior to morphine, giving better pain limited symptom-directed post-mortems. control with fewer side-effects. Cicely Some of you here today attended them. Saunders herself said ‘Diamorphine does the I wonder if you, like me, remember that they greatest good to the greatest number’. But she mostly seemed to happen on a Saturday also knew that this was only her impression morning! The first 63 autopsies were written and had never been researched. And so she up in the first edition of the journal Palliative invited Robert Twycross to join Medicine .3 Eighteen autopsies were in St Christopher’s as a research fellow to connection with our study of patients with conduct studies into many aspects of pain malignant intestinal obstruction and, in each control, including a comparison between case, the obstruction was confirmed, with morphine and diamorphine given orally. 14 patients showing it at multiple sites. This Because of the strongly held belief that study, with 40 patients, was published in The diamorphine was the better drug, the only Lancet in 1985. 4 [It included the 18 autopsied ethical way to proceed was to do a pilot study patients and 22 on which it was not possible first. Half the patients were given morphine or not appropriate to conduct post-mortems.] and half diamorphine, and people like me I hope that, if I joined your ward round next were asked to guess which drug they were on. week, I would often hear the question ‘why?’. Not surprisingly, everyone who had good pain The hospice’s symptom control leaflet has control with minimal side-effects we guessed grown into the Oxford Textbook of Palliative

224 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2011; 18(5) f a o r i c I T t M E p u a p o i s f i d n n n i r

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words “Watch with me”. Our most important needed. They wanted a 24-hour service with foundation for St Christopher’s is the hope doctors and nurses in the team. 9 that in watching we should learn not only And so the first home care service was born how to free patients from pain and distress, in October 1969, a model for the Uk. This how to understand them and never let them format has remained virtually unchanged at down, but also how to be silent, how to listen St Christopher’s and, in 2010, no less than and how just to be there.’ 8 1,800 new patients were visited and 48% of deaths occurred at home. This model was Adapting home care right for us but may well not be right for you. Until 1969 St Christopher’s was purely an You need to design your service to fit in with inpatient unit as were the other older hospices. the needs and resources in your country. Patients were admitted and, with very few Let me give you two examples that I know exceptions, remained there until they died. For well, focusing on how they coped with a the few who went home there was no follow- common problem. up. Then an incident occurred that led to the The Communist years in Romania left an founding of the first domiciliary service. appalling legacy, with many sick children in A woman in her 50s with severe pain from derelict orphanages and virtually no bone metastases due to breast cancer surprised treatment for older people unable to return to There were no us all by wanting to go home once the pain productive work. But, in 1991, just over a year other palliative was controlled. We tried to make careful plans, after the fall of Ceaucescu, an appeal to start care services at I phoned the general practitioner, and the hospice home care in Brasov was launched by home to guide drugs, including a moderate dose of Graham Perolls and others. A senior us and we felt diamophine, were given to her. But ten days oncologist came to the Uk for training and, on it was very later she was readmitted in agony because the his return, an English nurse joined him and important to doctor had reduced and then stopped the immediately began to train Romanian nurses. get it right opioid, feeling that it would otherwise turn There were no community nurses, so the team his patient into an addict. Of course, the pain had to do the care themselves or teach the had returned. Sadly, this story does not have a family. In spite of this, they offered a 24-hour happy ending. Her pain was easy to control service. At the start there was no oral but she had lost her nerve and did not want to morphine and the prescribing of morphine go home again. She remained an inpatient injections was so restricted and complicated until she died. that few received them. But the hospice team, However, it was this incident that prompted with outside experts, worked tirelessly to Cicely Saunders to say ‘We must start hospice change things and, in 2007, the government care at home now’. She looked around the approved a law to allow all doctors to prescribe hospice to find staff who had worked in the morphine, with no maximum dose. 10 community – a field in which she had no In Uganda, hospice care at home was started experience. She chose Barbara McNulty, a in 1993 by Anne Merriman. Before agreeing to nurse, and me, and she told us to start a launch it, she insisted that oral morphine domiciliary service. must be available and local doctors were The way forward was far from clear. There amazed at the difference that this made. But were no other palliative care services at home hospice could only cover a fraction of those to guide us and we felt it was very important to who needed help, so an approach to the get it right. We needed our service to fit in government was made to permit specially with the Uk pattern of care in the community. trained nurses to prescribe and deliver So we decided to spend some months going morphine, essential in rural areas where there round those already working there and asking are no doctors. In 2003, the law allowing this them if they wanted a hospice home care was passed and, at present, over two thirds of team and, if so, what form they wanted it to the 108 districts in Uganda have morphine- take. The answers came back, the majority prescribing nurses working in them. 11 welcomed the hospice going out into the Two examples of how palliative care at community, but the general practitioners home has tackled a specific local need. How wanted to remain in charge of patients at can your service or the one you are planning home and the district nurses wanted to serve your community better? This is a continue the practical nursing that was challenge to us all.

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Palliative care reaching out were successful, there would be less demand There in no doubt that Cicely Saunders did for nerve blocks and percutaneous not found St Christopher’s purely to care for cordotomies. An outstanding exception to patients in south-east London. Her aim was to this was the late Vittorio Ventafridda from change the world’s view of dying and this aim Milan. I remember him telling me that the was shared by those of us who worked with use of nerve blocks for cancer pain in his her. There were many ways in which this clinic had fallen from 83% to 14%. But he was could be achieved. pleased because his concern was for the well- Even before St Christopher’s opened, Cicely being of his patients, not the take-up of his Saunders was lecturing in the United States. specialty. A remarkable leader. An eight-week tour in 1963 followed by How are you going to ‘reach out’? Perhaps annual visits inspired many people and was by offering palliative care to a new group of one of the factors leading to the formation of patients, those with intractable cardiac failure the American hospice movement. She and or advanced multiple sclerosis. Perhaps by others went on to lecture widely in the Uk and making a link with those trying to establish a abroad and, from the start, we welcomed palliative care service in one of the 119 visitors. They came to see what we did and countries without one or in one of the went home, not to copy it but to apply it to countries where the work is very difficult. One of the their own circumstances. These visits are Perhaps by seeking an invitation to speak to things that always costly to staff but there are ways to nursing or medical students at your local pleases me minimise this, such as the monthly ‘Friday hospital, or writing an article in one of your most about visit’ at St Christopher’s, when individuals are professional journals. And there are hundreds the modern combined in a group for talks and a tour. more ways that I hope and pray you will hospice But we also have visitors who come for a explore during this conference. For the need movement in longer time. In 1973, Balfour Mount, a for ‘reaching out’ is as relevant today as when the UK is its urological surgeon from Canada, visited. He we started 44 years ago. It makes me want to increasing went back and founded a unit in his hospital, turn the clock back all those years and join involvement the Royal Victoria Hospital in Montreal, and you and start all over again! with different he gave the name ‘Palliative Care’ to our patient groups * Avril Jackson was until recently International specialty. Then, Gustavo de Simone from Information Manager at the Hospice Information Service Argentina came to a hospice conference and run by Help the Hospices and St Christopher’s Hospice. was persuaded to stay on for a further two Declaration of interest The author declares that there is no conflict of interest. weeks of clinical work. He had come across our References first textbook of palliative care in a remote part 1. Du Boulay S, Rankin M. Cicely Saunders, the Founder of the Modern of Patagonia and had decided to come and see Hospice Movement, updated edition. London: SPCk, 2007: 49. 2. Twycross RG. Choice of strong analgesic in terminal cancer: the work for himself. He went back and diamorphine or morphine? Pain 1977; 3: 93 –104. 3. Carter RL. The role of limited, symptom-directed autopsies in founded Pallium and became one of the terminal malignant disease. Palliat Med 1987; 1: 31 –36. 4. Baines M, Oliver DJ, Carter RL. Medical management of intestinal leaders of palliative care in South America. obstruction in patients with advanced malignant disease. A clinical But ‘reaching out’ is not just a matter of and pathological study. Lancet 1985; 2: 990 –993. 5. Saunders C. The symptomatic treatment of incurable malignant geography. One of the things that pleases me disease. Prescr J 1964; 4: 68 –73. 6. Hinton J. The Adult Patient: Reactions to Hospice Care. In: most about the modern hospice movement in Saunders C, Summers DH, Teller N (eds). Hospice: the Living Idea. London: Edward Arnold, 1981: 31 –43. the Uk is its increasing involvement with 7. Parkes CM. Evaluation of a bereavement service. J Prev Psychiatry different patient groups; for example, those in 1981; 1: 179 –188. 8. Saunders C. ‘Watch with me’. Nurs Times 1965; 61: 1615 –1617. care homes and those with dementia. 9. Baines M. The origins and development of palliative care at home. Progress in Palliative Care 2010; 18: 4–8. Perhaps the hardest groups to reach, 10. Mosoiu D, Ryan kM, Joranson DE, Garthwaite JP. Reform of drug control policy for palliative care in Romania. Lancet 2006; 367: especially at the beginning, were our own 2110 –2117. professional colleagues. Even speaking 11. Merriman A. Going the extra mile with the bare essentials: home care in Uganda. Progress in Palliative Care 2010; 18: 18-22. about pain control in the early days was The references in this article can be obtained from the fraught with difficulties. I well remember librarian at St Christopher’s Hospice. To contact her, please being asked to talk on the use of opioids send an email to: [email protected] at a conference on the management of Correspondance to: Mary Baines, St Christopher’s Hospice, London SE26 6DZ, UK, or: [email protected] cancer pain. In the question time at the end, I was attacked by both anaesthetists and neurosurgeons! Looking back, I wondered if Mary Baines, Emeritus Consultant in Palliative this was because they could see that, if drugs Medicine, St Christopher’s Hospice, London, UK

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