Management of Advanced Disease
Authors: S. Booth
Journal: Journal of the Royal Society of Medicine (2005)

Palliative medicine is distinct from other specialties not because it lays claim to a unique body of scientific knowledge and skills but because of its broad multiprofessional approach and the way it takes a clear lead from the patient. It also differs in possessing deep philosophical roots that must be continually tended if the specialty is not to involute into an amalgam of narrow therapeutic algorithms. Cicely Saunders spent some twenty-five years thinking about how and where to start with palliative care, in company with like-minded friends within and outside medicine who recognized that a narrow therapeutic vision could never meet the needs of patients at the end of their lives. The medical system of the day was unthinkingly cruel to the dying. Excellent modern therapy, though central to care, was not enough; symptom control needed a scientific base allied with a broader therapeutic and caring partnership of different professions. Dame Cicely, with her unrivalled depth of knowledge and love of the subject, reminds us of these beginnings in her opening contribution to Management of Advanced Disease1—a book that evolved from the first textbook of palliative care, The Management of Terminal Malignant Disease, published a quarter-century ago under her own editorship. The renaming reflects the way palliative care has moved from its focus on cancer to include advanced disease of any aetiology.

There are few textbooks to which one turns for stimulation and enjoyment as well as instruction; Management of Advanced Disease contains several important reviews that provoke this feeling, and I particularly liked the general section, with its attention to emerging themes. Among the contributions that follow Dame Cicely’s introduction is one from Frances Sheldon on communication—probably one of her last writings for publication before her death in February 2004. Though she prefaces her commentary with the remark that ‘there can be no exact blueprint for this work’, this single chapter succeeds in summarizing a notably elusive subject, capturing the subtleties as well as offering practical steps for everyday work. Among her key points are the importance of self-determination for people who are dying and the fact that ‘breaking bad news’ should be a process. Too often it is taught as though everything important must be said on a single occasion—answering an urgency that clinicians feel, no matter what signals are coming from the patient. This could become an important issue as palliative care principles become integrated into the mainstream of clinical practice: one can imagine, with the modern hunger for hard end-points to audit, the requirement to tick the ‘bad news broken’ box could be detrimental to patient and family care. It is with audit and outcome measures that Aspinal and Higginson end this important section: one of the challenges faced by modern specialist palliative care services is the need to show ‘added value’ from their activities—on which continued funding will depend.

In the section on symptom control I was pleased to see quite long entries on distressing symptoms such as hiccups, confusion, drowsiness and fatigue, dysuria, dysphagia and mouth troubles; these get short shrift in many texts. Insomnia also receives good attention, but here I would have liked a bit more on sleep hygiene and how insomnia is best addressed in various settings: the cultures of acute hospitals, hospices and home are very different and offer different modes of alleviation—and exacerbation. Kelly makes the important point that insomnia is a symptom not a diagnosis and encourages readers to seek out contributing factors. There is no mention, however, of dark and difficult dreams; one does not have to be a Jungian to see that sometimes these reflect underlying terrors, discussion of which can itself be therapeutic. The chapter on depression and suicide contains key questions to interpose in the patient’s narrative of illness which I have not seen set out in this way before and will be very helpful in teaching. In my experience, events surrounding diagnosis commonly underlie subsequent psychological distress; when the distress is due to misunderstandings, correction of these can be helpful even late in the course of the illness.

As one might expect from a book with this pedigree, the section on malignant disease is admirable, and I was particularly pleased to see the attention given to fractures and malignant wounds—very worrying for patients and staff. However, it is the section on non-malignant disease that deals with some of the greatest challenges facing palliative care, and Addington-Hall’s overview will be informative not only to clinicians but also to policy-makers and managers in hospices and trusts. There is increasing evidence that the techniques we have learned and used for patients with advanced cancer cannot be translated wholesale to those with advanced non-malignant disease. We will reach most of these patients through working in the community or in acute hospitals, and the best answer will seldom be long-term care from a hospice. Unlike patients with cancer, those with non-malignant diseases need more rather than less consultant care from within their disease specialty towards the end of their lives; only the organ specialists will have the knowledge and confidence to adjust long-term pharmacological treatment in the subtle and potentially dangerous ways necessary for someone with end-stage disease. Of course, in the last days or hours palliative care will be straightforward in therapeutic terms—but not in the last weeks or months. Prognostication, difficult enough in cancer, is almost impossible until the very end in non-malignant disease;2 therefore most care will have to take place outside separate-site specialist palliative care units and, at the very least, in close partnership with the referring specialists. The present unknowns, as Addington-Hall reiterates, should not discourage us from getting involved. We cannot opt out, but neither should we wade in with ‘our’ model; rather, we should publish the experience we have gained in treating patients with non-malignant disease (even if we lack data from randomized controlled trials) and learn with and from our colleagues in other areas of clinical medicine.

A difficulty for palliative care is that it functions in parallel universes. Management of Advanced Disease is excellent on organizational issues, but I would have liked more comment on the propagation of palliative medicine from one setting to another. Can there be another specialty that works and trains in such a variety of settings—the world of the acute hospital or primary care trust, where in the UK National Health Service palliative medicine lacks waiting-list initiatives or well-defined targets to encourage or extract funding in a competitive ‘market place’; and the world of the hospice, where clinicians negotiate with medical and lay people who have generally worked very hard to provide funding, spurred on by the experience of a personal or family tragedy? In the hospice setting, money is not the issue (provided the stock market is favourable and fundraisers are energetic) but funding is harder to obtain for less immediately and overtly beneficial projects, such as education. The effort of working with groups of people who ‘know’ what an institution needs and are impatient with humdrum employment practices3 can be deeply wearying and may contribute to individual burnout. Construction of a chapter on these issues would be difficult—but perhaps worth a try in the next edition.

Management of Advanced Disease fills a niche unoccupied by the large reference texts such as the Oxford Textbook of Palliative Medicine or the shorter symptom control guides such as OUP’s Oxford Core Text or Blackwell Scientific’s Handbook of Palliative Care. The particular importance of the book lies in its general section and the reviews of non-malignant disease and organizational issues. It is for the commentaries on these broader themes of palliative care, in a work that also offers portable advice on symptom control, that the editors and contributors deserve special congratulations. I shall turn to it frequently in both clinical and managerial practice.