End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort

National guidelines provide advice for end-of-life care in patients with prolonged disorders of consciousness (PDOC). Following a Supreme Court judgment in July 2018, updated guidelines set out requirements to ensure that decisions to withdraw clinically assisted nutrition and hydration (CANH) are made responsibly in the absence of a mandatory application to the court. This retrospective 8-year cohort analysis of prospectively collected clinical data examines the experience and lessons learned from implementing the guidelines in the 80 PDOC patients who have died in one tertiary centre since 2014. It also reports performance against the standards for elective withdrawal of CANH outside of court since July 2018. CANH was withdrawn in 39/80 (49%) of the patients, over half of whom were already imminently dying. Even in a centre where patients are referred for this purpose, elective CANH withdrawal is comparatively rare (just 14 patients since 2018). The requirements were met in all cases.