End-of-life decisions for young children: law, systems and Luhmann
type: CreativeWork
description: This study interrogates the legal and medical system rationalities that drive child end-of-life decision-making (CELDM) in respect of the very young. Neither conventional rights discourse nor legal doctrine has shown itself capable of resolving or indeed providing a full understanding of the issues involved. This study therefore takes a variegated approach. On the factual level it explores ways in which decisions are reached in circumstances of high epistemic uncertainty amplified by the impact of rapid technological advancement. On the temporal level it analyses how it is possible for desired outcomes (death/life) to change very significantly in a relatively short period of time, in the absence of regulation or considered public debate, and how this may be deemed socially acceptable. On the conceptual level it utilises aspects of Niklas Luhmann’s theory of social systems to develop new research strategies and tools to analyse this complex societal issue. The analysis focuses on events in England and Wales, a jurisdiction with a rich reported history in this area. [**********] Academic discourse on CELDM has narrowed since the 1980s. Now a small number of themes are mined to great depth. There are serious consequences to a flattening of debate, not least the disjunction between experience and expertise. To achieve a more comprehensive understanding, without which we cannot work towards better answers, we need to ask a greater diversity of questions. Space must therefore be claimed within academic discourse for new types of engagement. This study attempts a new understanding of one of the most sensitive, acutely controversial medico-legal issues of our time. This has led, of necessity, to a resort to interdisciplinarity because the tools and methodologies available within legal scholarship are not sufficient. Systems theory, a recognised sub-discipline of sociology, brings new concepts, ontologies, research strategies and objectives. This is challenging but appropria…
abstract: This study interrogates the legal and medical system rationalities that drive child end-of-life decision-making (CELDM) in respect of the very young. Neither conventional rights discourse nor legal doctrine has shown itself capable of resolving or indeed providing a full understanding of the issues involved. This study therefore takes a variegated approach. On the factual level it explores ways in which decisions are reached in circumstances of high epistemic uncertainty amplified by the impact of rapid technological advancement. On the temporal level it analyses how it is possible for desired outcomes (death/life) to change very significantly in a relatively short period of time, in the absence of regulation or considered public debate, and how this may be deemed socially acceptable. On the conceptual level it utilises aspects of Niklas Luhmann’s theory of social systems to develop new research strategies and tools to analyse this complex societal issue. The analysis focuses on events in England and Wales, a jurisdiction with a rich reported history in this area. [**********] Academic discourse on CELDM has narrowed since the 1980s. Now a small number of themes are mined to great depth. There are serious consequences to a flattening of debate, not least the disjunction between experience and expertise. To achieve a more comprehensive understanding, without which we cannot work towards better answers, we need to ask a greater diversity of questions. Space must therefore be claimed within academic discourse for new types of engagement. This study attempts a new understanding of one of the most sensitive, acutely controversial medico-legal issues of our time. This has led, of necessity, to a resort to interdisciplinarity because the tools and methodologies available within legal scholarship are not sufficient. Systems theory, a recognised sub-discipline of sociology, brings new concepts, ontologies, research strategies and objectives. This is challenging but appropria…
author: Somers, Caroline
language: en
keywords: Medical law, End-of-life law, Systems theory, Niklas Luhmann
license: https://creativecommons.org/licenses/by-nc-nd/4.0/
date published: 2021-09-29
date modified: 2026-07-24T01:48:07Z
provider: University College Cork
publisher: Networked Digital Library of Theses and Dissertations
type: WebPage
source organization: University College Cork

PropertyValue
property ID: Handle
value: https://hdl.handle.net/10468/13247