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‘With what shift and pains we come into the World we remember not; but 'tis commonly found no easy matter to get out of it’—Sir Thomas Browne (1605-1682)
‘I am not afraid to die. I just don't want to be there when it happens’—Woody Allen (1935-)
From times of common religious faith to the more secular societies of today, terminal illness and intimations of death have always presented the medical profession with one of its greatest challenges. Yet only recently has a serious attempt been made to focus on how to manage the final months of a distressing disease and, in particular, how to educate doctors in this vitally important aspect of their work. It is frightening to recall how ill prepared my own generation of young doctors were to cope with the problems of patients with terminal illnesses. If they were seen at any length by our chiefs or their junior staff, we were invariably excluded; I can still recall sleepless nights worrying about what I was going to say the next morning to patients who had incurable diseases. Quite early on as a student I began to suspect that most of the pastoral care was being provided by the ward sister, an impression subsequently confirmed on many occasions. Some years later, when I ran a small unit that treated patients with leukaemia in the days when only very primitive chemotherapy was available, I discovered the value of group meetings with the medical and nursing staff and patients' relatives so that between us we could evolve systems for support. Incidentally, at the same time, it became apparent that some of these patients could have many months of good-quality life if, when they became refractory to chemotherapy, they could be relieved of pain and anxiety—an experience which is still a main reason for my concern about the euthanasia movement.
Surveys conducted during the post-war period, and following the development of the Marie Curie movement, suggested that patient management in terminal-care homes was, though well meaning, often totally inadequate because of lack of skill and training. It was about this time that Cicely (now Dame Cicely) Saunders, whose experience as a nurse and almoner had motivated her to improve the care of terminally ill patients with cancer, decided to train as a doctor with the specific objective of addressing this problem. Within ten years of qualifying she had opened St Christopher's Hospice, dedicated to patient care, research and education. The hospice movement spread rapidly and was undoubtedly one of the major achievements in the past half-century of British medicine. Although still poorly funded by government and heavily reliant on charitable gifts, the movement has brought Dame Cicely's message to the attention of doctors world-wide.
Although it was natural that the hospice movement should focus at first on patients with cancer, Dame Cicely declares in the foreword to Palliative Care for Non-Cancer Patients1 that it was never her intention to restrict this approach to one particular disease. Rather, she hoped that the experience with cancer, gained in the early days of the movement, would be equally applicable to other forms of terminal illness. The editors, Julia Addington-Hall and Irene Higginson, invited experts in different fields of medicine, not all of them directly involved with the hospice movement, to define approaches to the palliation of illnesses within their particular specialties. Certain themes appear regularly enough to suggest that, while the expertise of those trained formally in palliative care may be valuable in many cases (particularly chronic neurological or cardio-respiratory disease and AIDS), specialist knowledge within the individual fields may also be important in improving the wellbeing of patients in the terminal stages of illness. Nowhere is this more evident than in the chapter which deals with sickle cell anaemia, where the concept of palliative care is stretched to the extreme. While it is true that the painful crises in this disease require expertise in pain relief, and that a chronic inherited disease which may produce symptoms from early childhood requires knowledgeable psychological support and lifelong advice from a well-informed team, there is much more to it than this. Painful crises need to be dealt with by doctors who have genuine expertise in the management of this condition; such crises may herald much more serious complications in which sickle cells are sequestrated into the lungs, spleen or other organs and it is vital that the patients are treated in a multidisciplinary unit with extensive knowledge and experience in their care.
Indeed, many of the discussions in this book deal with the symptomatic management of patients with longstanding incurable illness, highlighting the fact that there is a grey area in the minds of many doctors and nurses between management of such chronic disease and the kind of care provided by the hospice movement. Clearly, many of the attitudes and skills of the latter are germain to the care of any chronic illness, just as the skills of individual specialties have much to offer patients in the terminal stages of their diseases. But the hospice movement as developed by Cicely Saunders has taught us so much more about the management of terminal illness than good pastoral care and adequate pain relief, and its lessons and attitudes clearly ought to permeate every aspect of clinical practice.
In their summary, the editors get to the heart of the difficulties of providing palliative care across the whole range of clinical practice. With the increasing age of the population this will become an even greater challenge in the near future. The hospice movement must expand and provide more centres of excellence for the specific purpose of setting standards of clinical care, research and education. It must also be integrated increasingly into medical education, at both undergraduate and postgraduate level. And there may be a case for expanding its institutional scope, as has occurred in the case of AIDS, towards other chronic debilitating illnesses. Considering the diversity of skills required and the increasing workload, the care of the terminally ill, and certainly the chronically ill, will for the most part have to remain within individual hospital specialties, the community and the family.
The hospice movement should never have been required but, as so wonderfully demonstrated by Cicely Saunders, it most certainly was. Addington-Hall and Higginson have given us much to think about in their wide-ranging discussion of its broader possibilities. The educational role of hospices is now obvious but there is also a desperate need for research in every aspect of the field. With established religions now playing little part in comforting the dying, with our multiracial society expressing many different attitudes to death, with medicine's increasing ability to prolong life, this long-neglected activity of our profession will grow in importance. If the educational endeavour is successful it should be possible, in the longer term, to develop interactive networks between hospital specialists, primary care clinicians, patients' families and the expertise of the hospice movement of a sort that will offer adequate standards of management, care and support for those with incurable disease or the consequences of ageing.