How to change the Law: challenging mandatory court hearings for people in vegetative and minimally conscious states

On 30 July 2018, a landmark decision was handed down by the UK Supreme Court. In An NHS Trust v Y (‘Re Y’)1, the Court ruled that it is not mandatory to seek judicial approval for decisions to withdraw feeding tubes from patients in vegetative states or minimally conscious states. The courts are still available, of course, where the patient’s best interests are in dispute (e.g. between family and clinicians) or where the decision is ‘finely balanced’. We welcomed this decision. Our research at the Coma and Disorders of Consciousness Research Centre over the previous ten years had shown how mandatory court hearings work against these patients’ best interests – in particular by creating a situation in which patients are treated by default (sometimes for decades) without any consideration of whether or not ongoing clinically assisted nutrition and hydration (CANH) is in their best interests. We also found that, ironically, an unintended consequence of the apparent requirement for court applications was that various forms of life-sustaining treatment were being withdrawn very early (e.g. in intensive care) for some patients, perhaps earlier than the patient might have otherwise chosen for themselves, precisely to avoid missing the ‘window of opportunity’ for death without judicial scrutiny.. There are many obstacles to proper best interests decision-making about CANH for this patient group, but mandatory judicial scrutiny before treatment can be withdrawn was one key contributing factor which has now been removed. This chapter highlights the significance of the Supreme Court judgment, tells the story of the movement for law reform that cumulated in that judgment, and explores the role played by different evidence and arguments, case law, professional bodies, and key networks in creating that change. In particular, we explain how, as academics, advocates and activists, we contributed to the collective effort that achieved this reform.