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Evolution and development of hospice and specialist palliative care services
Clinical Oncology(1998) 10:50-55 © 1998 The Royal College of Radiologists
Clinical Oncology
History of Oncology Evolution and Development of Hospice and Specialist Palliative Care Services Gillian Ford Lately Medical Director, Marie Curie Cancer Care, London, UK
EARLY DAYS
Thirty years ago, St Christopher's Hospice opened its inpatient unit in Sydenham, London; 2 years later it set up a home care unit. From these two innovations we can date the effective launch of the modern hospice movement and its complementary development of palliative medicine. Change has been fast in all branches of medicine during these three decades most dramatically in 'high-tech' surgery and in pharmacology, and most problematic in the organization and funding of health care. However, there is considerable importance in the growth of palliative principles and practices in the care of the terminally ill. Although there is now much discussion of ways in which the ambit of such care may be enlarged, both backwards towards the earlier phases of life-threatening disease and more widely towards other diseases than cancer, we must not forget that the hospice movement had its origins in a special concern for cancer patients. Even today, the majority of those who now come within the purview of hospices and home care teams are dying of cancer. This is unlikely to change as the absolute number of cancer patients is likely to increase in the coming century for demographic reasons, while there continues to be growing public support and professional acceptance for palliative care. This focus on patients with late stage cancer means that palliative medicine has a special relationship with oncology and with those other specialties closely concerned in the diagnosis and continuing treatment of the disease, but it has never been an easy relationship. At the simplest level, there have been problems of status. A branch of the profession that has rightly prided itself on its expertise in treatment, and where research has often been funded by holding out half-hopes of a 'cure' to an anxious public, has tended to regard the hospice movement as an inflated form of nursing and to dismiss palliative medicine as a soft option without a significant research base, which, nevertheless, challenges for recognition. This is a state of mind that was simply exemplified by Aneurin Bevan. 'I would rather be kept alive in the cold Correspondence and offprint requests to: Dr G. Ford, 9 Ryecotes
Mead, Dulwich, London SE21 7EP, UK.
altruism of a large hospital', he said when introducing the NHS legislation in the House of Commons, 'than expire in a wash of sympathy in a small one'. There are also related problems of territory and approach. 'Large hospital' medicine has long had a dominating style, which is treatment orientated, will use heroic (and sometimes far from patient-friendly) measures to achieve success rates, and has given low ratings in attention and resources to patients in persistent pain with conditions that are no longer amenable to treatment. Such attitudes, though seldom admitted as strongly as they were held, were, of course, not universal. One thinks of pain clinics and oncology departments that have been striving significantly to ease the final weeks and days of patients, but the cool medical model is exemplified in much North American practice, where it accounts for a gulf between the traditional specialisms and the emergent specialism of palliative care. Such attitudes have, indeed, tended to hold back and even downgrade the hospice movement in the United States (though less so in Canada) and the phrase 'a state of two solitudes' [1] well describes the relationship there, and the difficulties that are faced by those who are trying to reconcile the differences between them. They are, moreover, differences that are hardened into routines and structures by the fact that conventional hospitals have a strong departmental structure and well established frameworks within those departments, whereas palliative care has from the start been based upon multiprofessional team-work. Terminal patient care, finally, has understandably been regarded as some kind of addendum to the treatment cure system. A common complaint from American hospice workers is that, underfunded and poorly regarded, they are left to cope with the wreckage when terminally ill patients no longer offer a professional challenge or the higher funding from state and insurance sources that is available earlier in their illness. I stress the extremes of this dichotomy in the United States, not because I am trying to make a case by analogy for much the same line of criticism here, but because such criticism could no longer fairly lie in this country, whatever may have been the case when the hospice movement was in its infancy, and when its very inception came as a reaction against seemingly detached and uncaring professionalism. Attitudes have changed, and are continuing to change. Although until the publication of the Calman-Hine
Evolution of Hospice and SpecialistPalliativeCare Services report [2] it was not easy to ensure that oncology and palliative care worked closely together, they are, in fact, fundamentally related, and, for all the growth of hospices and palliative care departments in hospitals, the majority of cancer patients will still be the primary responsibility of oncologists and its cluster of specialisms. For those of us who have seen the hospice movement thrive, as it makes a real and increasingly measurable contribution to cancer care, the long term aim has always been consensus and effective co-operation - not to hive off the terminally ill, but to bring what new skills and experience can offer to the mainstream of medicine generally, and to cancer care in particular. What is true of the links with institutional services may well be said of the borderline between specialist palliative care teams and primary care services, but these difficulties are in no sense new. I have lately been interested in the work of Pastor Theodore Fliedner, who, over 150 years ago, at Kaiserswerth in Germany, set up a hospital for the indigent sick run by the first Protestant nursing order, although he was inspired by the earlier Catholic teaching of St Vincent de Paul. To Kaiserswerth to study came Elizabeth Fry, Florence Nightingale and Mary Aikenhead (whose hospice in Dublin, set up in the 1880s, can be considered the first such venture in the British Isles). In the UK, where nursing itself was struggling for elementary professionalism in the form of the Nightingale movement, there were such physicians as William Marsden, who had seen the suffering of relatives and friends, and others such as Herbert Snow, regarded as a quack because he was concerned about mental distress and general debility as well as more clinical symptoms. In his case, the effort at palliation became known as the Brompton cocktail, an elixir of morphine, cocaine, chloroform and alcohol, sweetened with syrup or honey, which deadened pain but also stupefied the senses. Wholeperson medicine would certainly have been regarded as quackery when surgery, primitive chemotherapy and radium treatments were all based upon a biological model of the human body and physical treatment for its ills. The end of life was so often left to the consoling role of the clergy or a neighbourhood nurse, or relatives who were accustomed to death but medically ignorant. Physical symptoms dominated, and there seemed to be few effective means of relieving them, or of training people to use those that were to hand. It was against such a background that Cicely Saunders (who was to be made a Dame of the British Empire in 1980) began the systematic work that has been the foundation of modern palliative care. She brought significant talents to the task, as well as her own formidable personality. Before reading medicine, she had already qualified both as a social worker and a Nightingale nurse. Searing experiences of painful death in close friends had turned her towards a search for relief that was compatible with solace and human dignity. Her research, based at St Joseph's in 1958, was on modifying the Brompton cocktail, and using measures such as non-steroidal anti-inflammatory drugs, psychotropic drugs and palliative radiotherapy. It paid particular attention to the level, frequency and regularity of analgesic medication, and was a line of
51 work that began to reveal ways of maintaining a painfree quality of life instead of inducing stupor; once that possibility was defined in practice, a whole range of other forms of support could be linked into it. Dr Saunders rapidly became aware, through personal experience and her meticulous recordkeeping (over 7000 patients by the time St Christopher's opened), that there were these wider horizons beyond the window in despair that was opened by pain relief. Glimpses of them had been given in earlier work, not least in the first nationwide survey of cancer patients made by the (then) Marie Curie Memorial Foundation, soon after World War Two. Now, as cancer patients talked to Dr Saunders, they spoke of other things than physical misery: of loneliness, of spiritual pain, of feelings of abandonment, and of being equally frightened of treatment and of oblivion. She saw how the disease led to the breakup of families, and often to financial and psychological ruin, so that dependants and carers, as well as patients, needed help, not least with the often devastating consequences of bereavement. Terminal cancer, in short, was not simply a disease, and a inuch dreaded disease at that, it was, in fact, a cluster of potential and real tragedies that could be seen as a whole, demanding to be dealt with as a multifaceted human disaster. These are strong words, but they not only describe the concept of whole-person care that was developing into the central theme of the hospice movement, they also summarize the half-formulated fears that the diagnosis of cancer brings in its wake. Because the hospice movement began to address them, it found its niche in public appreciation and support, and increasingly in the world of medicine, both in the UK and overseas. The vital question, however, was how to begin. Cicely Saunders did not propose to start a movement, nor did she plan the national and international developments over which she has had such a considerable and beneficial influence. She simply set out to demonstrate what might be done, just by doing it. Although she probably never heard the words, or knew of the sociological ideas behind them, she adopted the strategy of what in the days of Roosevelt's New Deal was called 'the demonstration farm': let one farmer show what might be done with new ideas and modest resources and his neighbours might learn and profit from his experience. In the case of St Christopher' s, Dr Saunders concluded that it was necessary to start with an independent hospice, which could attract charitable funds and volunteer workers and enjoy the kind of flexibility that was not immediately on offer within the NHS. Such a national organization, relying on the rules and restrictions of public financing and committed to the 'large hospital' ethos, would not have been an easy context in which a small scale innovation in care, conceived by relative outsiders and lacking the backing of the medical establishment, could expect to strike root and discover its own patterns of growth. All innovation is difficult, usually controversial, and hard in the first instance to justify by results rather than arguments. The subsequent experience of the hospice movement has, in fact, shown what a successful model for innovation the independent hospice has proved to be. It has shown itself to be a viable starting point for so
52 many initiatives (at home and abroad) that it is sometimes assumed to be the only acceptable model. This is not the case. New variants are emerging, from different beginnings and in different circumstances: from hospices at home; from day hospices; from pain clinics; even from an isolated caravan in the Zimbabwean bush. However, such variants reflect the original concept of working from local needs and resources, subscribing to a set of general precepts and sharing experiences, and being able to survive, not in spite of their versatility but because of it. It has been, to use another American image, a 'grass roots' movement, and that has given it the strength to survive, to differentiate and to grow, within as well as without the NHS, where, perhaps, the greatest prospects for development now lie. At the heart of this experience-based development was symptom control by whatever means it could be accomplished, by whoever had the training, skills and motivation to do it. Pharmacological avenues were explored early on and were generally effective in coping with symptoms. The concept of total pain (physical, mental, spiritual, social), however, required different approaches, as did the recognition of the needs of families both before and after bereavement. These are at the heart of the sophisticated multiprofessional team-work that is now such a feature of specialist palliative care, whether it is provided in a general hospital, at home, or in a specialist unit. The simplistic view that there are no significant medical or nursing skills to differentiate palliative care fails to see that concepts such as team-work, quality of life and psychosocial support are as important to patients and families as the more traditional medical approaches, be they surgical, pharmacological or radiotherapeutic.
THE P R E S E N T PICTURE The basic statistics show where all this has led over 30 years. By 1996, in the UK and Ireland there were a total of 223 inpatient units providing 3253 beds. Of these, about 135 units were in voluntary hospices that were broadly similar to the St Christopher's model, and providing about 1900 beds. There were 11 Marie Curie Cancer Care Centres with 289 beds, eight Sue Ryder Homes with 151 beds, and 56 units in the NHS with 595 beds, initially supported by Macmillan Cancer Relief. To these inpatient services, of course, must be added other parts of the growing network of palliative care: hospices for children and those with HIV/AIDS, 408 home care services, 60 home respite schemes, 176 hospital support nurses, 139 hospital support teams, 234 day care services and the network of Marie Curie nurses providing more than a million hours per year of hands-on care at home [3]. A significant number, about 18% of the 160000 cancer deaths occurring every year in the UK, now take place in hospices and palliative care units, compared with 53% in NHS hospitals and 23% at home. However, such a simple division does not show the extent of interaction between the voluntary and public sectors; for one thing, hospice admissions are far from immediately terminal, and a high proportion
G. Ford of patients move back home for a time, or into hospitals, or pass through some combination of all three. The 1994 estimates, for example, show 56 000 admissions to hospices, while only 29000 persons actually died as inpatients. At the same time, to look at another part of the picture, 21 000 patients dying at home received home nursing, 125 000 were seen by hospice home care teams, and 25 000 attended a day hospice. The interesting point about the overlapping totals within these figures is the degree to which they demonstrate practical and increasing interaction and support between the voluntary and public sectors. It is important to emphasize the linkages between these sectors, by training schemes (over 100 specialist registrar posts are now recognized) and, not least, by joint appointments. It is only 10 years since the Joint Committee on Higher Medical Training approved a programme for those training in palliative medicine and the Royal College of Physicians recognized it as a specialty. There were appointments to the consultant grade before 1987, but, since then they have followed thick and fast and in a variety of forms. A common pattern now is the linked voluntary sector and NHS appointment; often this underpins NHS palliative practice with the resources and personnel of a voluntary inpatient and home care hospice (specialist) unit. The teaching and academic strengths of hospice and specialist palliative care are exemplified by the increasing number of professional and other academic posts, as well as by the steady growth of research in all fields of symptom control and the more complex issues of effective team-work and needs assessment. Partnership between the NHS and the voluntary sector has also been subject during its development to all the strains associated with the introduction of new measures of cost and performance both quantitative and qualitative - of a kind to which the voluntary sector had scarcely been exposed in the early years of local initiatives and small scale barrel-scraping development. It is fortunate that moves to create some national body, both to speak for and guide palliative care, came just as the stresses of NHS reforms began to be felt. With the endorsement of the Department of Health and the active participation of the main charities (and not least the financial backing of British Gas at a crucial moment), it was possible in 1991 to set up the National Council for Hospice and Palliative Care Services, which represents professional associations and palliative care providers. This was a real landmark. The Council soon came to recognize the need to define the role and scope of the services it represented and, in 1995, it issued a Statement of Definitions, which clarified their nature and distinguished services from attitudes and approaches [4]: Palliative Care Palliative care is the active total care of patients whose disease no longer responds to curative treatment, focusing on the quality of life and integrating the physical, psychological, spiritual and social aspects of care. It requires a collaborative (multiprofessional) approach and follows the patient; it is provided at home, in nursing homes, in residential care, in hospitals and specialist units. Domiciliary care may involve day care and respite inpatient care.
Evolution of Hospice and Specialist Palliative Care Services
Palliative Care Services This is a broad term which covers provision in both community and inpatient settings. Services may be NHS or voluntary, multiprofessional or uniprofessional, and may be provided by individuals or teams. Some services will meet the definition of specialist palliative care services, others may not; they are all staffed by professionals who have extensive experience and/or additional training in aspects of palliative care, some up to specialist level.
Palliative Care Approach The palliative care approach aims to promote both physical and psychosocial well being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by a knowledge and practice of palliative care principles. The key principles underpinning palliative care which should be practised by all health professionals in primary care, hospital and other settings comprise: • focus on quality of life which includes good symptom control • whole-person approach taking into account the person's past life experience and current situation • care which encompasses both the dying person and those who matter to that person • respect for patient autonomy and choice (e.g. over place of death, treatment options) • emphasis on open and sensitive communication which extends to patients, informal carers and professional colleagues
Specialist Palliative Care Services Specialist palliative care services are those services with palliative care as their core specialty. Specialist palliative care services are needed by a significant minority of people whose deaths are anticipated, and may be provided: directly through the specialist services or indirectly through advice to a patient's present professional advisers/carers.
Hospice and Hospice Care Hospices and hospice care refer to a philosophy of care rather than a specific building or service and may encompass a programme of care and array of skills deliverable in a wide range of settings. The majority of hospices meet the specialist palliative care definition.
Terminal Care Terminal care is an important parl of palliative care and usually refers to the management of patients during their last few days or weeks or even months of life from a point at which it becomes clear that the patient is in a progressive state of decline. Terminally ill people are those with active and progressive disease for which curative treatment is not possible or not appropriate and from which death can reasonably be expected within twelve months. I began this article by saying that there was a special (although not always comfortable) relationship between oncology and palliative care, more particularly with specialist palliative services. That relationship hinges upon the fact that cancer patients are the common constituency. While it is clear that oncology is essentially concerned with the treatment (and hopefully the prolongation of life) of patients, the domain of palliative c a r e is the care (and hopefully the quality of life) of patients who are passing or who have passed beyond curative treatment, and for whom symptom control is the first, if not the only, priority. There is no clear frontier between these positions, although there often may seem to be, as patients move from one jurisdiction to the other. The palliative approach increasingly illuminates the work of oncology departments that
53 have their own surgical, radiological and pharmaceutical practices, and, reflexively, these practices become assimilated into the working context of palliative care. There is nothing unusual about this; witness the negotiation about territories (and the relevance of particular techniques) between medical, clinical and surgical oncologists. The newer forms of primary care, and care in the community, have created analogous frontier problems. Where borderlines become a significant dilemma (as distinct from professional clinical differences), should the questions of responsibility - who is in charge, who is to do what, and when - be embodied in the protocols of referral and transfer? These are not inconsiderable matters in the current context of funding and contracting. One is really reduced to establishing areas of competence and activity, and then trying to define the lines of responsibility and the ways in which varied professional skills are divided and combined. The result should always be comprehensible to the staff concerned and to patients and their families. In recent years I have seen this process worked through within the sphere of palliative care, because it is central to the concept of team-work on a multiprofessional basis. More recently it is beginning to erode the notional boundaries between professionals working with any patient's late-stage disease. While research-based expertise tends to divide even isolate - professionals, the need for collaborative practice between them increases. The way out of that paradox is to seek a dynamic equilibrium that emphasizes common assumptions and objectives; that is what team-work is all about. A case in point, with which I have been concerned, is the development of research within the parameters of palliative care. This is an issue towards which the Department of Health and the Royal Colleges, as well as the palliative care practitioners, have rightly been encouraging attention. Here, it is not so much a matter of 'high-tech' or fundamental issues of biology and pharmacology. The target problems are, in a way, more evasive and less amenable to established research modes, because they relate to basic themes of sociology and psychology, because their ambit is wider (families and health care staff, for instance, as well as patients), because of problems of defining end-points, and because there are ethical and judgemental issues involved that bear more tellingly on matters of death and bereavement, while quantitative procedures at best act at one step removed from the carepatient equation. Similar problems have been identified in the evaluation of chemotherapy in late stage cancer. Nell MacDonald has looked at a series of studies of Phase I I - I I I treatment, which had been published in the Journal of Clinical Oncology [1]. In 1986-1987, not one of 24 published studies evaluated the effect of chemotherapy on pain or other symptoms. The same survey of 17 articles in 1991 had a similar outcome. The evaluation of the effect of chemotherapy on pain or other symptoms or quality of life was not part of the scenario. Perhaps things have changed since then, however. It is encouraging to note that the Oxford Textbook of Oncology, published in 1995, has
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chapters on quality of life, psychological sequelae of cancer and its treatment, pain and symptom control in advanced cancer, and care of the dying [5]. Palliative care and palliative medicine have been developing at a time when there has been huge emphasis on clinical audit, needs-based services, and evidence-based practice and education. In spite of the difficulties of both quantitative and qualitative research in this field, there is a growing body of accessible knowledge based on peer-reviewed research publications, which adds the essential scientific component to what otherwise might be regarded as tea and sympathy.
FUTURE DEVELOPMENTS Stocktaking is always useful and can be most constructive. What I have been saying so far is a small contribution to any reassessment of the relationship of the specialties of oncology and palliative medicine, written in the hope and expectation of closer ties of attitude and experience. However, as we look at the next 20 years, a repertoire of problems emerge, some of which are fairly specific to the field of palliative care and some of which have a more general bearing. There are, for instance, those that arise from the disproportionate part that the voluntary sector has hitherto played in the provision of palliative care, how this affects government attitudes, and a whole matrix of financing procedures from Treasury votes to health authority contracts. Many people working in the hospice field would suggest that this has been, and remains, the outstanding question in planning ahead. There is, again, the issue of euthanasia, which is bound to become a matter for greater public discussion and the making of public policy, but a matter in which the hospices are, for obvious reasons, vulnerable to damaging media comment and misrepresentation. The overwhelming weight of hospice opinion is currently opposed to assisted suicide, which is regarded as the antithesis of hospice attitudes to death and dying; but they are vulnerable because they are so much and so obviously concerned with patient comfort in the last days of life. Another issue, which is largely for internal debate, is the extent to which the kind of concern and care that has been developed for cancer patients - once seemingly neglected, but now thought by some to be relatively favoured should be extended, soon after diagnosis, to patients who are suffering from other life-threatening diseases. That debate is bound to raise issues in a wider medical field and be part of the ongoing discussion of the relevance of palliative precepts and practices in that wider field. It leads to questions such as the extent to which the teaching of such precepts and practices should be more specifically embodied in medical student and postgraduate professional education. The UK has a commendable record as far as undergraduate medical education is concerned [6]. Personally, I would rate training highly in my plans for the future. There are, at present, too few doctors coming to the end of their registrar training in this field to fill career grade vacancies and certainly to
G. Ford
meet any of the expansion that will follow as the total number of cancer patients, and others needing specialist palliative care input, increases in the years ahead. Much the same is true of specialized nurse training, not least for those working in community and primary care. There is, as yet, no place for palliative care in the core curriculum for occupational therapists and physiotherapists, and only a beginning has been made with appropriate training for social workers. It is precisely through such training, and work in jointly organized or financed clinics and specialist units, that palliative practice will best be assimilated into mainstream specialties. Of course, the closer the collaboration, the more we shall ease the sense of professional isolation that is felt by colleagues in small hospices or specialist palliative care units, and eliminate some of the scepticism that is felt by 'large hospital' colleagues who feel that their career prospects are best found in specialist expertise and the active treatment of their patients, not in what can be shrugged off as sophisticated nursing care.
All these matters need raising now, even if they are not easily resolved, because the burdens of an ageing population are already upon us. There are not merely more older people, but older people are living longer to incur cancer and other chronic diseases; there are not merely more people to be hospitalized, but more who have no fit carets at home or even viable homes of their own. The experience of hospice and hospital home care teams should be invaluable, will indeed be essential, if an intolerable demand is not to be laid upon carets in the first instance as well as primary care teams and social support agencies. We may, moreover, be looking at more nurse-provided services, including the administration of new drug formulations, and at the means of meeting 24-hour needs in an age when home visiting by general practitioners is steadily declining. These are among the reasons why, in my stocktaking, I do not see the next 30 years of hospice development being much the same as a projection of the past. I am not even sure how long the marvellous support that the public has given to small locally-based hospices will continue, or whether those that do continue will preserve the same independent form that has been so helpful so far in the establishment of a justly popular national network of hospice care. The possibilities have been well reviewed by a discussion document published in February 1997 by the National Council [7]. This was drafted by a working party led by Dr Derek Doyle, who has been one of the really significant contributors to the hospice experience. It suggests three or four probable models for the future, which are summarized here. The first would be a form of specialist palliative care, community-based and not exclusively for cancer patients, which would use the bed resources of the voluntary sector and work with the NHS through a pattern of joint appointments. This is pretty much the status quo. The second model, probably based in an oncology centre, would concentrate on the needs of cancer patients, be involved in their care at an earlier stage after diagnosis, and draw on staff who have had earlier training in one of the branches of oncology.
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Evolution of Hospice and Specialist Palliative Care Services The third m o d e l assumes a greater emphasis on hospital palliative care teams. In less than 20 years, the n u m b e r of these has increased from four to almost 250. These w o u l d have a variety of sponsors: c o m m u n i t y bases in the NHS, voluntary hospices, and c o m b i n a t i o n s of the two. Some could be linked to oncology centres, others will be separate hospital services available to patients with active, progressive and far advanced disease (with or without designated beds). One can foresee a complex of associations with primary care on the one hand and specialist clinics on the other. All three of these models must assume an extension of day care and home care facilities, possibly with significant variations in style and scale b e t w e e n them; and they must u n a v o i d a b l y assume multiprofessional team-work if they are to be both flexible and effective. A fourth possible model remains, of units specializing in one disease only. This is more speculative but has proved valuable in demonstrating how to cope with the special needs of patients with AIDS and HIV. The future here depends not only on n u m b e r s but upon the experience of coping with such patients in other parts of the palliative care network. Merely to state such possibilities is to show how far we have come. It is a road that is not merely marked by organizational change and new forms of care, but, to a degree that is truly remarkable, it is also marked by a change in attitudes and states of mind. These
now resonate far b e y o n d the specific d o m a i n of cancer care. The hospice style is receiving m u c h international credit for an i n n o v a t i o n that has wholepatient care at its heart.
References
1. MacDonald N. The interface between oncol0gy and palliative medicine. In: Doyle D, Hanks GW, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993. 2. The Expert Advisory Group on Cancer to the Chief Medical Officer of England and Wales (Calman-Hine report). A policy framework for commissioning cancer services. London: Department of Health, 1995. 3. Hospice Information Service, St Christopher's Hospice. 1997 Directory of hospice and palliative care services. London: Hospice Information Service, 1997. 4. National Council for Hospice and Specialist Palliative Care Services. Specialist palliative care: a statement of definitions (Occasional paper 8). London: National Council for Hospice and Specialist Palliative Care Services, 1995~ ' 5. Peckham M, Pinedo HM, Veronesi U, editors. Oxford textbook of oncology. Oxford: Oxford University Press, 1995. 6. Smith A. Education in palliative medicine. In: Doyle D, Hanks GW, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, in press. 7. National Council for Hospice and Specialist Palliative Care Services. Dilemmas and directions: the future of specialist palliative care (Occasional paper 11). London: National Council for Hospice and Specialist Palliative Care Services, 1997.
Received for publication October 1997 Accepted following revision November 1997
Book Review Molecular Biology for Oneologists, 2nd edition. Edited by J. R. Yarnold, M. Stratton and T. J. McMillan. Chapman and Hall, London, 1996. Price: £24.99; Hard cover. ISBN 0-412-71270-9. Within the span of a working lifetime, oncologists have been fortunate enough to follow the development of a new science that has allowed many of the secrets of malignant disease to unfold. Molecular biology has allowed us to see the truly amazing web of interactive cell control mechanisms that regulate the life and death of cells and of organisms as a whole. It has also allowed us to see how crude and naive most of our current treatment modalities are, and why (for the most part) they are destined to fail. This book is based upon a very successful series of courses designed for clinicians and draws on the expertise of at least 42 contributors, all of whom are affiliated to leading cancer research institutions. The style of the book is reminiscent of two other favourite (and highly recommended) texts, Molecular Biology of the Gene and Molecular Biology of the Cell, in that the text is broken down into many bite-sized sections, each with a statement as the section heading. This is a very useful format, and allows easy searching when the book is used for reference, or to refresh
previous reading of a particular topic. For a relatively small book, the scope of coverage is extremely impressive. It contains sections dealing with subjects that are currently of great interest to clinicians, such as gene therapy, angiogenesis inhibitors, and antisense oligonucleotide technology. The editors have managed to keep the text completely up to date, and I could find no major area of research that was not included. At £24.99, this book is an outstanding bargain, and can be highly recommended to clinicians, who will find it brings a new perspective and a new enlightenment to their clinical work. It will also be of value to students and biomedical scientists, and it would make an outstanding training text for postgraduate education in oncology. The next few years may well see a revolution in cancer treatment, in which cellular defects are targeted with molecular precision. This book is one of the best and most accessible introductions to the science that will launch this revolution. H. R. BAILLIE-JOHNSON Norfolk and Norwich Hospital Norwich, UK
Clinical Oncology
History of Oncology Evolution and Development of Hospice and Specialist Palliative Care Services Gillian Ford Lately Medical Director, Marie Curie Cancer Care, London, UK
EARLY DAYS
Thirty years ago, St Christopher's Hospice opened its inpatient unit in Sydenham, London; 2 years later it set up a home care unit. From these two innovations we can date the effective launch of the modern hospice movement and its complementary development of palliative medicine. Change has been fast in all branches of medicine during these three decades most dramatically in 'high-tech' surgery and in pharmacology, and most problematic in the organization and funding of health care. However, there is considerable importance in the growth of palliative principles and practices in the care of the terminally ill. Although there is now much discussion of ways in which the ambit of such care may be enlarged, both backwards towards the earlier phases of life-threatening disease and more widely towards other diseases than cancer, we must not forget that the hospice movement had its origins in a special concern for cancer patients. Even today, the majority of those who now come within the purview of hospices and home care teams are dying of cancer. This is unlikely to change as the absolute number of cancer patients is likely to increase in the coming century for demographic reasons, while there continues to be growing public support and professional acceptance for palliative care. This focus on patients with late stage cancer means that palliative medicine has a special relationship with oncology and with those other specialties closely concerned in the diagnosis and continuing treatment of the disease, but it has never been an easy relationship. At the simplest level, there have been problems of status. A branch of the profession that has rightly prided itself on its expertise in treatment, and where research has often been funded by holding out half-hopes of a 'cure' to an anxious public, has tended to regard the hospice movement as an inflated form of nursing and to dismiss palliative medicine as a soft option without a significant research base, which, nevertheless, challenges for recognition. This is a state of mind that was simply exemplified by Aneurin Bevan. 'I would rather be kept alive in the cold Correspondence and offprint requests to: Dr G. Ford, 9 Ryecotes
Mead, Dulwich, London SE21 7EP, UK.
altruism of a large hospital', he said when introducing the NHS legislation in the House of Commons, 'than expire in a wash of sympathy in a small one'. There are also related problems of territory and approach. 'Large hospital' medicine has long had a dominating style, which is treatment orientated, will use heroic (and sometimes far from patient-friendly) measures to achieve success rates, and has given low ratings in attention and resources to patients in persistent pain with conditions that are no longer amenable to treatment. Such attitudes, though seldom admitted as strongly as they were held, were, of course, not universal. One thinks of pain clinics and oncology departments that have been striving significantly to ease the final weeks and days of patients, but the cool medical model is exemplified in much North American practice, where it accounts for a gulf between the traditional specialisms and the emergent specialism of palliative care. Such attitudes have, indeed, tended to hold back and even downgrade the hospice movement in the United States (though less so in Canada) and the phrase 'a state of two solitudes' [1] well describes the relationship there, and the difficulties that are faced by those who are trying to reconcile the differences between them. They are, moreover, differences that are hardened into routines and structures by the fact that conventional hospitals have a strong departmental structure and well established frameworks within those departments, whereas palliative care has from the start been based upon multiprofessional team-work. Terminal patient care, finally, has understandably been regarded as some kind of addendum to the treatment cure system. A common complaint from American hospice workers is that, underfunded and poorly regarded, they are left to cope with the wreckage when terminally ill patients no longer offer a professional challenge or the higher funding from state and insurance sources that is available earlier in their illness. I stress the extremes of this dichotomy in the United States, not because I am trying to make a case by analogy for much the same line of criticism here, but because such criticism could no longer fairly lie in this country, whatever may have been the case when the hospice movement was in its infancy, and when its very inception came as a reaction against seemingly detached and uncaring professionalism. Attitudes have changed, and are continuing to change. Although until the publication of the Calman-Hine
Evolution of Hospice and SpecialistPalliativeCare Services report [2] it was not easy to ensure that oncology and palliative care worked closely together, they are, in fact, fundamentally related, and, for all the growth of hospices and palliative care departments in hospitals, the majority of cancer patients will still be the primary responsibility of oncologists and its cluster of specialisms. For those of us who have seen the hospice movement thrive, as it makes a real and increasingly measurable contribution to cancer care, the long term aim has always been consensus and effective co-operation - not to hive off the terminally ill, but to bring what new skills and experience can offer to the mainstream of medicine generally, and to cancer care in particular. What is true of the links with institutional services may well be said of the borderline between specialist palliative care teams and primary care services, but these difficulties are in no sense new. I have lately been interested in the work of Pastor Theodore Fliedner, who, over 150 years ago, at Kaiserswerth in Germany, set up a hospital for the indigent sick run by the first Protestant nursing order, although he was inspired by the earlier Catholic teaching of St Vincent de Paul. To Kaiserswerth to study came Elizabeth Fry, Florence Nightingale and Mary Aikenhead (whose hospice in Dublin, set up in the 1880s, can be considered the first such venture in the British Isles). In the UK, where nursing itself was struggling for elementary professionalism in the form of the Nightingale movement, there were such physicians as William Marsden, who had seen the suffering of relatives and friends, and others such as Herbert Snow, regarded as a quack because he was concerned about mental distress and general debility as well as more clinical symptoms. In his case, the effort at palliation became known as the Brompton cocktail, an elixir of morphine, cocaine, chloroform and alcohol, sweetened with syrup or honey, which deadened pain but also stupefied the senses. Wholeperson medicine would certainly have been regarded as quackery when surgery, primitive chemotherapy and radium treatments were all based upon a biological model of the human body and physical treatment for its ills. The end of life was so often left to the consoling role of the clergy or a neighbourhood nurse, or relatives who were accustomed to death but medically ignorant. Physical symptoms dominated, and there seemed to be few effective means of relieving them, or of training people to use those that were to hand. It was against such a background that Cicely Saunders (who was to be made a Dame of the British Empire in 1980) began the systematic work that has been the foundation of modern palliative care. She brought significant talents to the task, as well as her own formidable personality. Before reading medicine, she had already qualified both as a social worker and a Nightingale nurse. Searing experiences of painful death in close friends had turned her towards a search for relief that was compatible with solace and human dignity. Her research, based at St Joseph's in 1958, was on modifying the Brompton cocktail, and using measures such as non-steroidal anti-inflammatory drugs, psychotropic drugs and palliative radiotherapy. It paid particular attention to the level, frequency and regularity of analgesic medication, and was a line of
51 work that began to reveal ways of maintaining a painfree quality of life instead of inducing stupor; once that possibility was defined in practice, a whole range of other forms of support could be linked into it. Dr Saunders rapidly became aware, through personal experience and her meticulous recordkeeping (over 7000 patients by the time St Christopher's opened), that there were these wider horizons beyond the window in despair that was opened by pain relief. Glimpses of them had been given in earlier work, not least in the first nationwide survey of cancer patients made by the (then) Marie Curie Memorial Foundation, soon after World War Two. Now, as cancer patients talked to Dr Saunders, they spoke of other things than physical misery: of loneliness, of spiritual pain, of feelings of abandonment, and of being equally frightened of treatment and of oblivion. She saw how the disease led to the breakup of families, and often to financial and psychological ruin, so that dependants and carers, as well as patients, needed help, not least with the often devastating consequences of bereavement. Terminal cancer, in short, was not simply a disease, and a inuch dreaded disease at that, it was, in fact, a cluster of potential and real tragedies that could be seen as a whole, demanding to be dealt with as a multifaceted human disaster. These are strong words, but they not only describe the concept of whole-person care that was developing into the central theme of the hospice movement, they also summarize the half-formulated fears that the diagnosis of cancer brings in its wake. Because the hospice movement began to address them, it found its niche in public appreciation and support, and increasingly in the world of medicine, both in the UK and overseas. The vital question, however, was how to begin. Cicely Saunders did not propose to start a movement, nor did she plan the national and international developments over which she has had such a considerable and beneficial influence. She simply set out to demonstrate what might be done, just by doing it. Although she probably never heard the words, or knew of the sociological ideas behind them, she adopted the strategy of what in the days of Roosevelt's New Deal was called 'the demonstration farm': let one farmer show what might be done with new ideas and modest resources and his neighbours might learn and profit from his experience. In the case of St Christopher' s, Dr Saunders concluded that it was necessary to start with an independent hospice, which could attract charitable funds and volunteer workers and enjoy the kind of flexibility that was not immediately on offer within the NHS. Such a national organization, relying on the rules and restrictions of public financing and committed to the 'large hospital' ethos, would not have been an easy context in which a small scale innovation in care, conceived by relative outsiders and lacking the backing of the medical establishment, could expect to strike root and discover its own patterns of growth. All innovation is difficult, usually controversial, and hard in the first instance to justify by results rather than arguments. The subsequent experience of the hospice movement has, in fact, shown what a successful model for innovation the independent hospice has proved to be. It has shown itself to be a viable starting point for so
52 many initiatives (at home and abroad) that it is sometimes assumed to be the only acceptable model. This is not the case. New variants are emerging, from different beginnings and in different circumstances: from hospices at home; from day hospices; from pain clinics; even from an isolated caravan in the Zimbabwean bush. However, such variants reflect the original concept of working from local needs and resources, subscribing to a set of general precepts and sharing experiences, and being able to survive, not in spite of their versatility but because of it. It has been, to use another American image, a 'grass roots' movement, and that has given it the strength to survive, to differentiate and to grow, within as well as without the NHS, where, perhaps, the greatest prospects for development now lie. At the heart of this experience-based development was symptom control by whatever means it could be accomplished, by whoever had the training, skills and motivation to do it. Pharmacological avenues were explored early on and were generally effective in coping with symptoms. The concept of total pain (physical, mental, spiritual, social), however, required different approaches, as did the recognition of the needs of families both before and after bereavement. These are at the heart of the sophisticated multiprofessional team-work that is now such a feature of specialist palliative care, whether it is provided in a general hospital, at home, or in a specialist unit. The simplistic view that there are no significant medical or nursing skills to differentiate palliative care fails to see that concepts such as team-work, quality of life and psychosocial support are as important to patients and families as the more traditional medical approaches, be they surgical, pharmacological or radiotherapeutic.
THE P R E S E N T PICTURE The basic statistics show where all this has led over 30 years. By 1996, in the UK and Ireland there were a total of 223 inpatient units providing 3253 beds. Of these, about 135 units were in voluntary hospices that were broadly similar to the St Christopher's model, and providing about 1900 beds. There were 11 Marie Curie Cancer Care Centres with 289 beds, eight Sue Ryder Homes with 151 beds, and 56 units in the NHS with 595 beds, initially supported by Macmillan Cancer Relief. To these inpatient services, of course, must be added other parts of the growing network of palliative care: hospices for children and those with HIV/AIDS, 408 home care services, 60 home respite schemes, 176 hospital support nurses, 139 hospital support teams, 234 day care services and the network of Marie Curie nurses providing more than a million hours per year of hands-on care at home [3]. A significant number, about 18% of the 160000 cancer deaths occurring every year in the UK, now take place in hospices and palliative care units, compared with 53% in NHS hospitals and 23% at home. However, such a simple division does not show the extent of interaction between the voluntary and public sectors; for one thing, hospice admissions are far from immediately terminal, and a high proportion
G. Ford of patients move back home for a time, or into hospitals, or pass through some combination of all three. The 1994 estimates, for example, show 56 000 admissions to hospices, while only 29000 persons actually died as inpatients. At the same time, to look at another part of the picture, 21 000 patients dying at home received home nursing, 125 000 were seen by hospice home care teams, and 25 000 attended a day hospice. The interesting point about the overlapping totals within these figures is the degree to which they demonstrate practical and increasing interaction and support between the voluntary and public sectors. It is important to emphasize the linkages between these sectors, by training schemes (over 100 specialist registrar posts are now recognized) and, not least, by joint appointments. It is only 10 years since the Joint Committee on Higher Medical Training approved a programme for those training in palliative medicine and the Royal College of Physicians recognized it as a specialty. There were appointments to the consultant grade before 1987, but, since then they have followed thick and fast and in a variety of forms. A common pattern now is the linked voluntary sector and NHS appointment; often this underpins NHS palliative practice with the resources and personnel of a voluntary inpatient and home care hospice (specialist) unit. The teaching and academic strengths of hospice and specialist palliative care are exemplified by the increasing number of professional and other academic posts, as well as by the steady growth of research in all fields of symptom control and the more complex issues of effective team-work and needs assessment. Partnership between the NHS and the voluntary sector has also been subject during its development to all the strains associated with the introduction of new measures of cost and performance both quantitative and qualitative - of a kind to which the voluntary sector had scarcely been exposed in the early years of local initiatives and small scale barrel-scraping development. It is fortunate that moves to create some national body, both to speak for and guide palliative care, came just as the stresses of NHS reforms began to be felt. With the endorsement of the Department of Health and the active participation of the main charities (and not least the financial backing of British Gas at a crucial moment), it was possible in 1991 to set up the National Council for Hospice and Palliative Care Services, which represents professional associations and palliative care providers. This was a real landmark. The Council soon came to recognize the need to define the role and scope of the services it represented and, in 1995, it issued a Statement of Definitions, which clarified their nature and distinguished services from attitudes and approaches [4]: Palliative Care Palliative care is the active total care of patients whose disease no longer responds to curative treatment, focusing on the quality of life and integrating the physical, psychological, spiritual and social aspects of care. It requires a collaborative (multiprofessional) approach and follows the patient; it is provided at home, in nursing homes, in residential care, in hospitals and specialist units. Domiciliary care may involve day care and respite inpatient care.
Evolution of Hospice and Specialist Palliative Care Services
Palliative Care Services This is a broad term which covers provision in both community and inpatient settings. Services may be NHS or voluntary, multiprofessional or uniprofessional, and may be provided by individuals or teams. Some services will meet the definition of specialist palliative care services, others may not; they are all staffed by professionals who have extensive experience and/or additional training in aspects of palliative care, some up to specialist level.
Palliative Care Approach The palliative care approach aims to promote both physical and psychosocial well being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by a knowledge and practice of palliative care principles. The key principles underpinning palliative care which should be practised by all health professionals in primary care, hospital and other settings comprise: • focus on quality of life which includes good symptom control • whole-person approach taking into account the person's past life experience and current situation • care which encompasses both the dying person and those who matter to that person • respect for patient autonomy and choice (e.g. over place of death, treatment options) • emphasis on open and sensitive communication which extends to patients, informal carers and professional colleagues
Specialist Palliative Care Services Specialist palliative care services are those services with palliative care as their core specialty. Specialist palliative care services are needed by a significant minority of people whose deaths are anticipated, and may be provided: directly through the specialist services or indirectly through advice to a patient's present professional advisers/carers.
Hospice and Hospice Care Hospices and hospice care refer to a philosophy of care rather than a specific building or service and may encompass a programme of care and array of skills deliverable in a wide range of settings. The majority of hospices meet the specialist palliative care definition.
Terminal Care Terminal care is an important parl of palliative care and usually refers to the management of patients during their last few days or weeks or even months of life from a point at which it becomes clear that the patient is in a progressive state of decline. Terminally ill people are those with active and progressive disease for which curative treatment is not possible or not appropriate and from which death can reasonably be expected within twelve months. I began this article by saying that there was a special (although not always comfortable) relationship between oncology and palliative care, more particularly with specialist palliative services. That relationship hinges upon the fact that cancer patients are the common constituency. While it is clear that oncology is essentially concerned with the treatment (and hopefully the prolongation of life) of patients, the domain of palliative c a r e is the care (and hopefully the quality of life) of patients who are passing or who have passed beyond curative treatment, and for whom symptom control is the first, if not the only, priority. There is no clear frontier between these positions, although there often may seem to be, as patients move from one jurisdiction to the other. The palliative approach increasingly illuminates the work of oncology departments that
53 have their own surgical, radiological and pharmaceutical practices, and, reflexively, these practices become assimilated into the working context of palliative care. There is nothing unusual about this; witness the negotiation about territories (and the relevance of particular techniques) between medical, clinical and surgical oncologists. The newer forms of primary care, and care in the community, have created analogous frontier problems. Where borderlines become a significant dilemma (as distinct from professional clinical differences), should the questions of responsibility - who is in charge, who is to do what, and when - be embodied in the protocols of referral and transfer? These are not inconsiderable matters in the current context of funding and contracting. One is really reduced to establishing areas of competence and activity, and then trying to define the lines of responsibility and the ways in which varied professional skills are divided and combined. The result should always be comprehensible to the staff concerned and to patients and their families. In recent years I have seen this process worked through within the sphere of palliative care, because it is central to the concept of team-work on a multiprofessional basis. More recently it is beginning to erode the notional boundaries between professionals working with any patient's late-stage disease. While research-based expertise tends to divide even isolate - professionals, the need for collaborative practice between them increases. The way out of that paradox is to seek a dynamic equilibrium that emphasizes common assumptions and objectives; that is what team-work is all about. A case in point, with which I have been concerned, is the development of research within the parameters of palliative care. This is an issue towards which the Department of Health and the Royal Colleges, as well as the palliative care practitioners, have rightly been encouraging attention. Here, it is not so much a matter of 'high-tech' or fundamental issues of biology and pharmacology. The target problems are, in a way, more evasive and less amenable to established research modes, because they relate to basic themes of sociology and psychology, because their ambit is wider (families and health care staff, for instance, as well as patients), because of problems of defining end-points, and because there are ethical and judgemental issues involved that bear more tellingly on matters of death and bereavement, while quantitative procedures at best act at one step removed from the carepatient equation. Similar problems have been identified in the evaluation of chemotherapy in late stage cancer. Nell MacDonald has looked at a series of studies of Phase I I - I I I treatment, which had been published in the Journal of Clinical Oncology [1]. In 1986-1987, not one of 24 published studies evaluated the effect of chemotherapy on pain or other symptoms. The same survey of 17 articles in 1991 had a similar outcome. The evaluation of the effect of chemotherapy on pain or other symptoms or quality of life was not part of the scenario. Perhaps things have changed since then, however. It is encouraging to note that the Oxford Textbook of Oncology, published in 1995, has
54
chapters on quality of life, psychological sequelae of cancer and its treatment, pain and symptom control in advanced cancer, and care of the dying [5]. Palliative care and palliative medicine have been developing at a time when there has been huge emphasis on clinical audit, needs-based services, and evidence-based practice and education. In spite of the difficulties of both quantitative and qualitative research in this field, there is a growing body of accessible knowledge based on peer-reviewed research publications, which adds the essential scientific component to what otherwise might be regarded as tea and sympathy.
FUTURE DEVELOPMENTS Stocktaking is always useful and can be most constructive. What I have been saying so far is a small contribution to any reassessment of the relationship of the specialties of oncology and palliative medicine, written in the hope and expectation of closer ties of attitude and experience. However, as we look at the next 20 years, a repertoire of problems emerge, some of which are fairly specific to the field of palliative care and some of which have a more general bearing. There are, for instance, those that arise from the disproportionate part that the voluntary sector has hitherto played in the provision of palliative care, how this affects government attitudes, and a whole matrix of financing procedures from Treasury votes to health authority contracts. Many people working in the hospice field would suggest that this has been, and remains, the outstanding question in planning ahead. There is, again, the issue of euthanasia, which is bound to become a matter for greater public discussion and the making of public policy, but a matter in which the hospices are, for obvious reasons, vulnerable to damaging media comment and misrepresentation. The overwhelming weight of hospice opinion is currently opposed to assisted suicide, which is regarded as the antithesis of hospice attitudes to death and dying; but they are vulnerable because they are so much and so obviously concerned with patient comfort in the last days of life. Another issue, which is largely for internal debate, is the extent to which the kind of concern and care that has been developed for cancer patients - once seemingly neglected, but now thought by some to be relatively favoured should be extended, soon after diagnosis, to patients who are suffering from other life-threatening diseases. That debate is bound to raise issues in a wider medical field and be part of the ongoing discussion of the relevance of palliative precepts and practices in that wider field. It leads to questions such as the extent to which the teaching of such precepts and practices should be more specifically embodied in medical student and postgraduate professional education. The UK has a commendable record as far as undergraduate medical education is concerned [6]. Personally, I would rate training highly in my plans for the future. There are, at present, too few doctors coming to the end of their registrar training in this field to fill career grade vacancies and certainly to
G. Ford
meet any of the expansion that will follow as the total number of cancer patients, and others needing specialist palliative care input, increases in the years ahead. Much the same is true of specialized nurse training, not least for those working in community and primary care. There is, as yet, no place for palliative care in the core curriculum for occupational therapists and physiotherapists, and only a beginning has been made with appropriate training for social workers. It is precisely through such training, and work in jointly organized or financed clinics and specialist units, that palliative practice will best be assimilated into mainstream specialties. Of course, the closer the collaboration, the more we shall ease the sense of professional isolation that is felt by colleagues in small hospices or specialist palliative care units, and eliminate some of the scepticism that is felt by 'large hospital' colleagues who feel that their career prospects are best found in specialist expertise and the active treatment of their patients, not in what can be shrugged off as sophisticated nursing care.
All these matters need raising now, even if they are not easily resolved, because the burdens of an ageing population are already upon us. There are not merely more older people, but older people are living longer to incur cancer and other chronic diseases; there are not merely more people to be hospitalized, but more who have no fit carets at home or even viable homes of their own. The experience of hospice and hospital home care teams should be invaluable, will indeed be essential, if an intolerable demand is not to be laid upon carets in the first instance as well as primary care teams and social support agencies. We may, moreover, be looking at more nurse-provided services, including the administration of new drug formulations, and at the means of meeting 24-hour needs in an age when home visiting by general practitioners is steadily declining. These are among the reasons why, in my stocktaking, I do not see the next 30 years of hospice development being much the same as a projection of the past. I am not even sure how long the marvellous support that the public has given to small locally-based hospices will continue, or whether those that do continue will preserve the same independent form that has been so helpful so far in the establishment of a justly popular national network of hospice care. The possibilities have been well reviewed by a discussion document published in February 1997 by the National Council [7]. This was drafted by a working party led by Dr Derek Doyle, who has been one of the really significant contributors to the hospice experience. It suggests three or four probable models for the future, which are summarized here. The first would be a form of specialist palliative care, community-based and not exclusively for cancer patients, which would use the bed resources of the voluntary sector and work with the NHS through a pattern of joint appointments. This is pretty much the status quo. The second model, probably based in an oncology centre, would concentrate on the needs of cancer patients, be involved in their care at an earlier stage after diagnosis, and draw on staff who have had earlier training in one of the branches of oncology.
55
Evolution of Hospice and Specialist Palliative Care Services The third m o d e l assumes a greater emphasis on hospital palliative care teams. In less than 20 years, the n u m b e r of these has increased from four to almost 250. These w o u l d have a variety of sponsors: c o m m u n i t y bases in the NHS, voluntary hospices, and c o m b i n a t i o n s of the two. Some could be linked to oncology centres, others will be separate hospital services available to patients with active, progressive and far advanced disease (with or without designated beds). One can foresee a complex of associations with primary care on the one hand and specialist clinics on the other. All three of these models must assume an extension of day care and home care facilities, possibly with significant variations in style and scale b e t w e e n them; and they must u n a v o i d a b l y assume multiprofessional team-work if they are to be both flexible and effective. A fourth possible model remains, of units specializing in one disease only. This is more speculative but has proved valuable in demonstrating how to cope with the special needs of patients with AIDS and HIV. The future here depends not only on n u m b e r s but upon the experience of coping with such patients in other parts of the palliative care network. Merely to state such possibilities is to show how far we have come. It is a road that is not merely marked by organizational change and new forms of care, but, to a degree that is truly remarkable, it is also marked by a change in attitudes and states of mind. These
now resonate far b e y o n d the specific d o m a i n of cancer care. The hospice style is receiving m u c h international credit for an i n n o v a t i o n that has wholepatient care at its heart.
References
1. MacDonald N. The interface between oncol0gy and palliative medicine. In: Doyle D, Hanks GW, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993. 2. The Expert Advisory Group on Cancer to the Chief Medical Officer of England and Wales (Calman-Hine report). A policy framework for commissioning cancer services. London: Department of Health, 1995. 3. Hospice Information Service, St Christopher's Hospice. 1997 Directory of hospice and palliative care services. London: Hospice Information Service, 1997. 4. National Council for Hospice and Specialist Palliative Care Services. Specialist palliative care: a statement of definitions (Occasional paper 8). London: National Council for Hospice and Specialist Palliative Care Services, 1995~ ' 5. Peckham M, Pinedo HM, Veronesi U, editors. Oxford textbook of oncology. Oxford: Oxford University Press, 1995. 6. Smith A. Education in palliative medicine. In: Doyle D, Hanks GW, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, in press. 7. National Council for Hospice and Specialist Palliative Care Services. Dilemmas and directions: the future of specialist palliative care (Occasional paper 11). London: National Council for Hospice and Specialist Palliative Care Services, 1997.
Received for publication October 1997 Accepted following revision November 1997
Book Review Molecular Biology for Oneologists, 2nd edition. Edited by J. R. Yarnold, M. Stratton and T. J. McMillan. Chapman and Hall, London, 1996. Price: £24.99; Hard cover. ISBN 0-412-71270-9. Within the span of a working lifetime, oncologists have been fortunate enough to follow the development of a new science that has allowed many of the secrets of malignant disease to unfold. Molecular biology has allowed us to see the truly amazing web of interactive cell control mechanisms that regulate the life and death of cells and of organisms as a whole. It has also allowed us to see how crude and naive most of our current treatment modalities are, and why (for the most part) they are destined to fail. This book is based upon a very successful series of courses designed for clinicians and draws on the expertise of at least 42 contributors, all of whom are affiliated to leading cancer research institutions. The style of the book is reminiscent of two other favourite (and highly recommended) texts, Molecular Biology of the Gene and Molecular Biology of the Cell, in that the text is broken down into many bite-sized sections, each with a statement as the section heading. This is a very useful format, and allows easy searching when the book is used for reference, or to refresh
previous reading of a particular topic. For a relatively small book, the scope of coverage is extremely impressive. It contains sections dealing with subjects that are currently of great interest to clinicians, such as gene therapy, angiogenesis inhibitors, and antisense oligonucleotide technology. The editors have managed to keep the text completely up to date, and I could find no major area of research that was not included. At £24.99, this book is an outstanding bargain, and can be highly recommended to clinicians, who will find it brings a new perspective and a new enlightenment to their clinical work. It will also be of value to students and biomedical scientists, and it would make an outstanding training text for postgraduate education in oncology. The next few years may well see a revolution in cancer treatment, in which cellular defects are targeted with molecular precision. This book is one of the best and most accessible introductions to the science that will launch this revolution. H. R. BAILLIE-JOHNSON Norfolk and Norwich Hospital Norwich, UK