contemporary neurology series: palliative care in neurology
TRANSCRIPT
J Neurol (2005) 252 : 243–244DOI 10.1007/s00415-005-0740-0
Contemporary NeurologySeries: Palliative Care inNeurology
Raymond Voltz, James L. Bernat,Gian Domenico Borasio, IanMaddocks, David Oliver andRussell K. Portenoy (Eds.)Published by Oxford UniversityPress, New York, USA, 2004476 Pages, HardbackISBN: 0-19-850843-3Price: £79.50
It would be difficult to think that pal-liative care is anything other than asubject of great importance to allneurologists,but in reality it is an as-pect of neurology that is remarkablylittle discussed or researched. TheWorld Health Organisation has de-fined palliative care as ‘an approachthat improves the quality of life of pa-tients and their families facing theproblem associated with life-threat-ening illness, through the preventionand relief of suffering by means ofearly identification and impeccableassessment and treatment of painand other problems, physical, psy-chosocial and spiritual’. How few ofus, however, are knowledgeable ortrained in this area of medicine, andhow many of us may have let downour patients and their families at thetime of their greatest need?
The aim of this book is to serveas an academic textbook and also toteach neurologists about palliativecare issues, so that they can con-tinue ‘providing excellent care forneurological patients through thefinal stage of their disease’. Thebook comprises six parts each con-taining several chapters. The firstpart deals with specific disease enti-ties, ranging from stroke to tu-mours, Parkinson’s disease toepilepsy, and diseases of motornerves to dementia, not forgettingpaediatric neurological disorders.The second part, consisting of threechapters grouped under the title‘Neurologic outcome and palliativecare’, encompasses persistent vege-tative state, quadriplegia and para-plegia, and locked-in syndrome.The third part deals with commonsymptoms, including spasticity(doubtfully a symptom, albeit pro-ducing symptoms), pain, nauseaand vomiting, and so forth. Partfour called ‘Other problems with ad-vanced illness’ includes neurologicalemergencies, pressure ulcers, stom-atitis, and managing the dying pa-tient; part five is concerned withethical issues such as refusal andwithdrawal of treatment, informedconsent, and food and hydration;and part six entitled ‘General as-pects’ comprises psychological as-pects, spirituality, cultural aspectsof care, palliative care education forneurologists, and the final chapter,‘So, here’s what’s happened in mylife since last April’ – a personal ac-count by Professor Jaffee who sub-sequently succumbed to motor neu-ron disease before the book wascompleted. Chapters start with a vi-gnette outlining a clinical case his-tory, and the book also has four il-lustrations by Robert Pope whichrelate to his personal experiences ofchronic illness.
There is much in this book ofgreat importance, even if thearrangement of the individualchapters is rather haphazard. To
pick out a few chapters this reviewerfound of particular interest: the ac-count of the locked-in syndrometells one all one needs to know injust seven pages; the background toand management of nausea andvomiting provide a very useful sum-mary; the often ignored but cru-cially important trans-cultural as-pects are well summarised; and oneof the most interesting chapters isan outstanding discussion on seda-tion in the imminently dying pa-tient. In this latter chapter, Dr. Voltzand Dr. Foley confront head-on thedifference between humane seda-tion and euthanasia in the immi-nently dying, and consider that se-dation should be an appropriatepalliative care option, and not con-fused with active euthanasia. Per-meating the book is the importanceof the multidisciplinary approach topalliative care.
In addition to the big issues,there are also some enlighteningpractical nuggets – for example, thatpatients are at a great disadvantagein expressing their emotions if theirfacial muscles are paralysed (p.140),that sedation before withdrawal ofrespiratory support provides leastdistress for the patient (p. 352), andthat a good way of starting to assessthe sources of a patient’s distress orworry is to ask ‘What is your great-est concern?’ (p. 413). There areother comments, however, withwhich one should take issue, such asthat ‘Clinical experience and neu-ropathological examination suggestthat VS [vegetative state] patientsare unaware of pain’ (p. 121). Clini-cal experience is powerless in thissituation, and pathology is irrele-vant; the practical implications forthe patient thought to be unaware ofpain are obvious.
As so commonly occurs in amulti (62)-author book, the styleand content of the contributions arevery variable, and the six editorscould with advantage have beenmuch more decisive in wielding the
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editorial axe. For example, the dis-cussion on epidemiology and typesof stroke in Chapter 2; much ofChapter 18 dealing with seizures,their classification, and anticonvul-sant regimes; and animal models ofspasticity and changes in excitabil-ity of spinal neuronal networks(pp. 148–9) are entirely irrelevant inthis book. There is also duplication;for example, the management ofstatus epilepticus is almost exactlyrepeated on pages 181 and 288, andthe discussion of the locked-in syn-drome appears on pages 18 and 19,as well comprising Chapter 14.There is omission as well. Thus dis-cussion of HIV/AIDS and Creutz-feldt-Jakob disease occupies a wholechapter. Yet other encephalitidessuch as herpes simplex encephalitis,
chronic and potentially fatal menin-gitides such as from tuberculosis,and head injury are barely men-tioned, and do not even appear inthe index.
Doubtless there are differencesin management in different coun-tries, perhaps accounting for whyamantadine – admittedly unli-censed for this indication in the UKbut nevertheless used – does not ap-pear amongst the treatments of fa-tigue. Again, as discussed in Chap-ter 37 on ‘Informed consent’,accepted clinical practice and legis-lation on matters such as consent,withdrawal of care, and the like dif-fer around the world and changewith time. It is essential that due ac-count is taken of such issues by thepractising clinician.
Although much of the material isapplicable to palliative care in pa-tients suffering from any form oflife-threatening illness, this is prob-ably the first textbook that is specif-ically intended for neurologists, andit is to be warmly welcomed. Thesubject is dealt with thoroughly andfrom many angles, and the bookshould prove invaluable to everyonedealing with these major neurologi-cal issues.With firmer editorial con-trol the next edition will doubtlessbe even better.
G. D. SchottConsultant NeurologistThe National Hospital forNeurology & NeurosurgeryLondon, UK