Choices in Palliative Care: Issues in Health Care Delivery
Blank, Arthur E.; O’Mahony, Sean; Selwyn, A. (Eds.) 2007, XVIII, 238 p. Hardcover
ISBN: 978-0-387-70874-4 €54.95
Book Review by Simon Woods
This edited collection of 14 chapters by 31 contributors is written from and for the American context of palliative care. This fact will necessarily limit the appeal of this text for an international readership since the context, structure and history of palliative care is very different in the U.S from that found in the UK and other European countries with an established palliative care service. The book will however be of interest to those readers seeking to make international comparison, and there are many similarities and differences of note. The need for more, better, and newer forms of palliative care is a familiar refrain. Virtually every chapter in this text begins by emphasising the demographic time-bomb of an ageing population and the burgeoning problem of chronic disease associated with this. This is clearly a major challenge facing the future providers of palliative care.
Other familiar themes addressed in this book include the lack of and need for palliative care within acute settings (Chapter 1), the need for palliative care support for patients in their own homes (Chapter 3) and the potential for synergy between palliative and rehabilitation approaches (Chapter 5). Chapter 1 also includes some reflections on the nature of palliative care which now places emphasis on symptom control in chronic disease rather than focussing exclusively on terminal care.
Contemporary palliative care has gradually crept from under the shadow of the hospice and terminal care by a process of “up-streaming” and “expansion”. “Up-streaming” is the gradual change that has occurred in the point at which palliative interventions are deemed appropriate in the illness trajectory. This can be characterised as a change of emphasis “upstream” from the terminal phase to a point much earlier in the illness trajectory. “Expansion” refers to the way in which palliative care has turned its attention to chronic diseases other than cancer, reflected in this book by including chapters on HIV/AIDS, Chronic Obstructive Lung Disease, Dementia and Chronic Heart Failure. The inclusion of a chapter on ageing is also significant since it represents a further example of palliative care “creep” into other domains of expertise. This of course raises a number of questions about the very nature of palliative care. One of these concerns the relationship between palliative and terminal care. Several commentators in the UK have observed that terminal care has suffered as a consequence of “up-streaming”. There are also questions about the discipline of palliative care, whether it is a distinct discipline, a medical specialty or an approach. There has been a tendency in recent scholarship to regard palliative care as neither disease nor organ nor system orientated but rather as an approach exercised at two levels, through general principles and specialist skills. Yet it is also true that the major focus of palliative care in the past has been cancer and hence many of the specialist skills are cancer focussed. Cicely Saunders, one of the pioneers of modern palliative care embraced the idea of the transferability of palliative care between contexts and across diseases however a significant challenge for the expansion of palliative care to other disease groups still remains its predominantly cancer focus. A strength of this book is that it acknowledges the need to import disease specific knowledge from other disciplines into palliative care.
This book is unfortunately light on the conceptual analysis of palliative care, perhaps as might be expected in a volume aiming to introduce palliative care to a wide novice audience. It might be argued that this has been too much of a preoccupation of palliative care scholarship in recent years, although it does seem an opportunity missed. It is pertinent to ask what palliative care is, when palliative care begins and to whom it applies. This is particularly important when considering the illness trajectories of different diseases, the possible impact and policy implications for palliative care. This point is acknowledged by Selwyn et al in Chapter 6 where they refer to research which has shown that the trajectory for cancer is very different to other chronic diseases such as heart failure or dementia and hence the need to assimilate into palliative care the skills developed within other disease focussed disciplines. The implication that palliative care is appropriate far in advance of the terminal phase has important policy implications and in the U.S context this means a shortfall in funding since there are strict limitations on the Medicare approved hospice programme as discussed in Chapter 4. A specific problem for palliative care is that this programme does not extend to the possible range of palliative interventions employed before the terminal phase.
Although there are ethical issues bubbling beneath the surface in several chapters they are rarely addressed explicitly as ethical issues; it takes a seasoned eye to tease these out. The single chapter devoted to ethical, legal and policy issues is Chapter 14 although this is disappointingly short and rather formulaic. Perhaps predictably the chapter adopts a “principles” approach but does, in fairness, begin to scratch at the icon of autonomy in an appropriate way. In a way this chapter is emblematic of the whole text which seems to aim at breadth at the expense of depth. The blurb-promises a “far-sighted” text with the suggestion of a re-definition of palliative care, but without the conceptual analysis needed for such a re-definition the book falls far short of its claims.