Ethics in Child Health – Chapter 25: Considering best interest, quality of life, autonomy and personhood in the intensive care unit (ebook)


Chapter 25 of the book – Considering best interest, quality of life, autonomy and personhood in the intensive care unit

This chapter  poses  the  provocative  question  about  whether  our  Western focus on the value of an individual’s autonomy might at times clash with our uncertainty about an individual’s capacity for independent thought and action. This in turn raises questions about parental (or other proxy) decision-making, and the potential for clashes between professionals’ values and perceptions of the limited ‘personhood’ of people with significant  impairments, in contrast to the values that parents might hold even in the face of their child’s severe impairments. Clarke’s account of the story of Charlie, a significantly impaired adolescent, brings together and contrasts the notions of ‘quality of life’ (an essentially personal ‘existential’ perspective) and ‘value of a life’ (judged from the outside and often considered to be very low in people with signifi functional challenges).

About the complete book

Have you ever:

  • Wondered how to deal with a family that repeatedly fails to keep clinic appointments?
  • Disagreed with colleagues over a proposed course of treatment for a child?
  • Considered ways to ‘bump’ a child on a waiting to speed up their assessment?

These are a few of the scenarios faced by clinicians in neurodisability on a daily basis. Ethics in Child Health explores the ethical dimensions of these issues that have either been ignored or not recognised. Each chapter is built around a scenario familiar to clinicians and is discussed with respect to how ethical principles can be utilised to inform decision-making. Useful ‘Themes for Discussion’ are provided at the end of each chapter to help professionals and students develop practical ethical thinking. Ethics in Child Health offers a set of principles that clinicians, social workers and policy-makers can utilise in their respective spheres of influence.


Readership: clinicians and paediatricians in neurodisability, service providers in neurodisability, community-based health professionals,  and health policy makers.

[iframe id=””]