Clinical ethics is the study of, and response to, situations of moral complexity. It is a broad discipline and those who write about difficult decisions are not always seen as helpful to those charged with making difficult decisions. Nowhere are the decisions more difficult than in paediatrics. Dominic Wilkinson is a relatively rare creature in the world of clinical ethics: he combines scholarship in philosophy with experience as a practising paediatrician. It is this combined expertise that makes this book a unique and invaluable contribution to the literature on paediatric decision-making.
From the outset, the reader knows she is in unusual company. The author skilfully draws on his training in philosophy, bioscience and clinical practice to offer an analysis that is original, not merely in content but also in form. Wilkinson’s comparison of the Carmentis Machine (consulted by parents in ancient Rome for prophecies about their children) with contemporary neuroimaging is inspired. The narratives that combine in a retrospective and prospective prologue reveal, in a matter of pages, the moral complexities and clinical uncertainties that imbue paediatric ethics.
While multidisciplinary perspectives are often rich and enriching, there is a risk that drawing on a range of disciplines can dilute the depth and rigour of analysis. There is no such dilution in this book. The attention Wilkinson affords to the philosophical, the scientific and the human aspects of clinical decision-making is not only effectively balanced but consistently robust. The first part of the book is predicated on a thought experiment in which prognostic uncertainty is eliminated. This is more than a philosophical indulgence. By removing the ambiguity inherent in clinical predictions, Wilkinson is able to explore the relative weight and moral claims that inform paediatric decision-making - for example, the extent to which the priorities and needs of parents are relevant and whether the presence of siblings affects paediatric decision-making. This philosophical exploration does not end in abstraction. Instead Wilkinson draws on the well-argued and carefully reasoned analysis in the first part of the book to reflect on and critique the ways in which these difficult decisions are made in clinical practice.
The second part of the book focuses on the realities of making decisions in an imperfect context in which individual needs, familial interests, clinical uncertainty and limited resources collide to create choices that are often painful for parents and clinicians alike. The fearless focus on the realities of clinical practice leads to a critique of existing guidance available for those charged with making decisions about critically ill children. In particular, Wilkinson argues that the role and interests of parents should be explicitly defined and formalised in international guidance. Moreover, there should, he suggests, be an acknowledgement that the best interests of a sick child are inextricably linked to the interests of the family as a whole. These are not novel suggestions and the inter-related nature of best interests in paediatric ethics is a well-trodden path of enquiry and argument. However, this is the first text I have encountered that attends equally to the science, clinical context and ethical concepts that make for “good” decision-making in paediatrics. That attention to the nuanced character of these most testing of ethical choices leads Wilkinson to propose a framework to support everyone - parents and clinicians - involved in paediatric decision-making. And that framework is much more than merely being another layer of guidance. It is considered and logical while also being humane and compassionate. Much, I imagine, like Wilkinson himself.
Death or Disability: The ‘Carmentis Machine’ and Decision-making for Critically Ill Children
By Dominic Wilkinson
Oxford University Press, 320pp, £40.00
Published 24 January 2013