Uncertainty in Medical Innovation: experienced pioneers in neonatal care . Basingstoke : Palgrave Macmillan , 2008 xi + 219 pp. £50 ISBN 9-78-0-230-21672-3 ( hbk )
Part of the Health, Technology and Society series, this book aims to analyse actual processes of managing uncertainty in neonatal intensive care. Examples are drawn from four months of research in a Dutch neonatal unit and time in a North American (USA) unit. The seven chapters explore the dynamic of change, the working relationships between the adults, numbers-centred modern intensive care, and ‘moral’ decision-making, using the examples of a few babies with uncertain prognoses. The final chapter, rather ominously called The end of the journey, reviews the book’s contribution, to report ‘fine-grained’ research, and to ‘provide insights into both the reshaping of societal responses to health innovations…and to open up the interface between diagnosis and prognosis, between men [sic] and machine and between medical facts and moral concerns, and to examine these interlinked yet discrete processes’ (p.180). The book includes many meticulous detailed reports of medical and nursing knowledge and protocols, complex clinical and social procedures, and intricate micro-records of babies’ fluctuating health status. The author argues that technological advances are reshaping the ethics of healthcare, and that morality is situated.
‘Innovation’ is quite an elastic concept. The fieldwork data were collected in the 1990s. Mesman’s research theories, methods and findings owe much to USA ethnographies of intensive care from the 1990s and 1980s by Anspach, Frohock and Zussman. Over four decades in my neonatal experiences and ethnographic research, and work with groups devising medical ethics guidelines, I have found that, although some clinical knowledge and skills change, similar intractable questions arose in the 1970s.
Some parts of the book could be clearer. The two neonatal units are barely distinguished, although the USA tends to be the most pro-neonatal-treatment country in the world, whereas the Netherlands is famed for its caution. One Dutch unit recently raised the lower limit for treatment from 24 up to 25 weeks gestation, whereas one British unit treats a few babies born at 22 weeks. I have long wondered about this great policy difference, and the book partly explains it. Perhaps premature babies fare better in US and UK units, where decisions to give or withhold treatment must involve far more neurological and cardiological expertise than appears to be routine in Dutch units.
Mesman’s detailed debates avoid major questions. For example, how does state or insurance funding for neonatal care affect parents’ decisions – and stress? What should be done with babies aged under 24 or 25 weeks who manage to survive for some hours, so that treatment begins, but then it is found that delay has incurred serious morbidity likely to have been prevented by immediate treatment? What should be done in the even harder cases, when babies are off support and are breathing independently but their life does not seem to be worth living? Should fluids be withheld? The book ignores crucial decades-long debates in UK and US neonatal ethics and law, about ‘withholding futile treatment’ and ‘double effect’. The UK and US would reject the Dutch concepts, ‘life-ending action’, ‘senseless life’ and the oxymoron ‘unliveable life’. Mesman aims to describe how morality is performed, but ‘morality’ appears to be so relative, situated, undefined, lacking in agreed principles, and cited to support any pragmatic course, that it is unclear how morals differ from maths, utility or any other kind of calculation.
Medical and nursing perspectives predominate. Those of the other main actors, parents and babies, are largely excluded. Their suffering is briefly described, but their humanity is missing from central analyses, so that immensely complex neonatal dilemmas risk being reduced into mechanical ones. Types of time are only described from the staff point of view. Conflicts between neonatal clock time and the babies’ and mothers’ biological rhythms and healthcare needs are ignored. Mesman (mis)asserts that babies’ prognoses equate with their identity, and that the baby, referred to as ‘it’, is lost and forgotten inside the tangle of technology. It is disappointing that the real transforming neonatal innovations, based on Heidelisa Als’s practical work with babies as persons, agents and self health carers, are ignored. We used Als’s work to show how neonatal care continually involves working with babies to wean them off dependence on the technology and intensive nursing, whereas Mesman sees fixed medically prescribed systems instead of dynamic interactive ones. Mesman sets up supposed dichotomies: experience versus expectation; medical expertise in the particular child or in the statistical group; the question either ‘how is the child?’ or ‘what shall we do?’ However, each pair is inseparable and constantly interacting. Other integral key topics, including the place of moral emotions, and tensions between lab and nursery where families have their most intimate private experiences scrutinised in the public arena, are ignored, which diminishes understanding of neonatal uncertainties and pioneering.
I doubt that practitioners would gain much from reading this book, and expect the main readers will be ethnographic researchers and healthcare lecturers and students. I hope they will debate the author’s views rather than endorse them.