Book review: Death or Disability

[Stefan Johansson]

The NICU is equipped with powerful tools to treat critically ill infants. But our great possibilities to save lifes have added weight to the difficult questions of predicting what morbidities a child may face in the future. Decision-making can sometimes be hard whether to continue or withdraw care.

Dominic Wilkinson is not only a consultant neonatologist, he is also an ethicist. In his book “Death or Disability”, he manages to synthesize his backgrounds in medicine and philosophy in the most elegant way. For myself, reading “Death or Disability” was thought-provoking and the book gave me many more hours of thinking than reading.

Leaning against examples of situations and practises over the last 2000 years, Wilkinson dissects ethical questions related to clinical care and decision-making. First, he focuses on the question of the “best interest”. I was especially caught by the chapter on competing interests, when decisions in the NICU may be complicated by imbalances between what may be considered to be in the best for the infant, in the best for the parents, and even in the best for other infants and families when resources are constrained. Then Wilkinson continues with addressing our difficulties to make predictions of later outcomes and how that uncertainty may impact our treatment decision, and the interests of the infant and parents.

The final chapter aims to conclude Wilkinson’s reasoning around the best interest and the uncertainty of predictions, by dealing with the issue of guidelines. Is it possible, or even feasible, to define circumstances that inevitable lead to a certain treatment decision? Wilkinson argue that clinicians should aim to develop a “threshold framework” to assist decision-making. By bordering situations when treatment efforts are uncertain, one should aim to set thresholds when care should always continue, and when care should always be withdrawn. Although different clinical scenarios, like birth asphyxia and preterm birth, need their own specific framework, Wilkinson suggests how to process questions and draw conclusions.

I do recommend this book to all neonatal staff, as it pinpoints a context of  neonatal care I doubt we consider enough. Caring for newborn infants is technically simple compared to the larger questions our care relates to, questions about meaning, consequences, values, and even resource allocation. Additionally, the book should inspire the neonatal community to learn much more about how to predict outcomes. The uncertainty what the future holds for a critically ill infant and its family is a bad guide in the decision-making process.

The book can be purchased from Oxford University Press, Amazon, and probably also from your local bookstore (ISBN13 978-0199669431).

[Francesco Cardona]

I totally agree this is an absolute recommendation for any neonatal staff. It shows how much we still need to learn about outcomes and how to predict outcomes better.

[Guest drhasan5]

Many thanks for our colleague as his book will be a help and a good lecture for the stuff and neonatologists and peditricians

[mjaytherapy]

Hello, I appreciate Stefan's review of the book. I intend to buy several copies and share it to my coworkers in the NICU as well as the PICU. Although family choices are considered first in most cases, all of the medical team members' decision - making process to provide and continue care  remains an agonizing task. I agree that more work is needed to develop a "Threshold Framework" to guide us in the care for these fragile patients.