10 - Challenging Mandatory Court Hearings for People in Vegetative and Minimally Conscious States

Summary

In An NHS Trust v. Y, the UK Supreme Court ruled that it is not mandatory to seek judicial approval for decisions to withdraw feeding tubes (clinically assisted nutrition and hydration (CANH)) from patients in vegetative or minimally conscious states. The courts remain available where a patient's best interests are in dispute (e.g. between family and clinicians) or where a decision is 'finely balanced’. We welcomed this decision. Our research at the Coma and Disorders of Consciousness Research Centre over the previous decade had shown how mandatory court hearings work against these patients’ best interests ‒ in particular by creating situations where patients are treated by default (sometimes for decades) without consideration of whether ongoing CANH is in their best interests. This chapter highlights the significance of the Supreme Court judgement, tells the story of the movement for law reform that culminated in that judgement, and explores the role played by different evidence, arguments, case law, professional bodies, and networks in creating change. We explain how, as academics, advocates and activists, we contributed to the collective effort that achieved this reform.