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Logo of jnnpsycJournal of Neurology, Neurosurgery and PsychiatryVisit this articleSubmit a manuscriptReceive email alertsContact usBMJ
J Neurol Neurosurg Psychiatry. 2007 July; 78(7): 778.
PMCID: PMC2117685

Palliative care in amyotrophic lateral sclerosis

Reviewed by Richard W Orrell

Edited by David Oliver, Gian Domenico Borasio, Declan Walsh. Published by Oxford University Press, Oxford, 2006, £29.95 (softcover), pp 335. ISBN 978 0 19 857048 6

Palliative care has been defined as “the active total care of patients whose disease is not responsive to curative treatment” (World Health Organisation, 1990). Using this definition, all treatment of amyotrophic lateral sclerosis (ALS) or motor neuron disease is palliative. Some palliative care physicians will take on a range of non‐fatal chronic neurological conditions, with the patient losing the opportunity to access more specific neurological advice. Neurologists may utilise a palliative care approach. An alternative definition is “the active holistic care of patients with advanced progressive illness” (NICE, 2004). The patient with ALS benefits most from the latter interpretation, but early access to palliative care, or supportive care, services is to be encouraged.

This book tends to the first definition, and a significant proportion of the content relates to what may broadly be considered the medical, and paramedical, management of ALS. The more interesting content from a neurologist's point of view is the discussion of spiritual care, end of life care and bereavement, addressed from both North American and British perspectives. The dilemma “knowing that we shall die, how do we make sense of life?” and the paradox “not only are we more than our bodies, it is sometimes in the absence of physical capacities that people are most profoundly alive”, are faced acutely by patients with ALS. The realisation and acceptance of the situation may be hard and painful, but is an essential element of learning to live with the condition. I think that many of the failures in patient management relate to this difficult situation. Often this seems to be a result of lack of access to appropriate specialist skills, which are often found in the palliative care environment.

This is the second edition, and although much is unchanged from the first edition, the elements above make this worth a further read. This book provides an excellent overview of the supportive care of patients with ALS (motor neuron disease), and their families, with a palliative care approach. The authorship is international, with North American, European and British contributions.

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