End-of-life decisions for young children: law, systems and Luhmann
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 appropriate. Interdisciplinary scholarship requires that we reflect on knowledge while creating it because some social problems are so complex they require this kind of non-automatic engagement. [**********] In relation to law, Luhmann refused to supply a normative analysis of a normative discourse. This would involve prior commitment and unexamined assumptions. Instead he offered a cognitive approach, one that seeks to learn rather than to instruct. In relation to undecidable questions, including CELDM, or so called ‘wicked problems’, we may be persuaded by this. These are situations inhabited by ineradicable uncertainty, in which the correct answer cannot be deduced logically, and the issue remains a source of disagreement among reasonable people. And all the while decisions must be made, and whatever decision is made will bring profound irreversible consequences. In such circumstances the simple aggregation of norms, the imposition of a normative framework on a normative discourse, makes little sense as a starting point for analysis. [**********] This study therefore presents a deliberately cognitive engagement with the normative discourses of law and medicine. It follows a logical path mining the history of CELDM to understand why, in our previous society, it was accepted medical practice to allow children with relatively minor disabilities to go untreated. The thesis begins by providing a rich socio-historical analysis of clinical practice focused on the decades immediately prior to legal intervention in 1981, but taking in the longer view also; the history of institutionalisation in Britain. The ‘stigmata’ cases of 1981, R v Arthur and Re B, and their contemporary discourse, are explored in detail for the legal, medical and public attitudes recorded. 1981 is seen to mark a pivotal moment when the beginnings of change to a new medico-legal order in respect of CELDM are evident. [**********] These emerging dynamics in the medical system are interrogated using the tools of systems theory. They are dynamics to which the legal system would be required, in time, to respond. The discussion therefore turns to the gradual expansion in legal best interests rationality over the past three decades. The law is seen to remain open textured, but in practice to be more predictable and accompanied by more intellectual scaffolding than is sometimes allowed. The thesis ends with a consideration of the role of reform in legal academia, and the critical evaluation of two reform proposals in respect of CELDM. Throughout, Luhmann’s theory provides the framework for analysis. It justifies the selection of methods and configures the limitations of a study that is framed and formulated by a relationship of fidelity to its methodology. [**********] The contribution of this study is the creation of a new model through which to observe and analyse CELDM as a medico-legal issue. It is achieved in ways that are deeply contextualised, historically rich and secured by a robust conceptual underpinning.
Medical law, End-of-life law, Systems theory, Niklas Luhmann
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