Why futile and unwanted life-prolonging treatment continues for some patients in permanent vegetative states (and what to do about it): Case study, context and policy recommendations

Abstract

In August 2017 a judge sanctioned withdrawal of clinically assisted nutrition and hydration from a patient who had been sustained in a vegetative state for twenty-three years, finding it “overwhelmingly in his best interests” for treatment to stop, allowing him to die. Injured in 1994, this patient had continued to receive life-sustaining treatment long after clinicians, and his family, had abandoned any hope for recovery and with no evidence that he would have wanted to be kept alive this way. Based on interviews with his parents, and the court hearing, we explore how it came about that he received this treatment for so long. We contextualize this in relation to our wider research about the treatment of severely brain injured patients and ask why, despite guidelines, policies and statute concerning best interests decision-making, thousands of patients in permanent vegetative states are similarly maintained in England and Wales without any formal review of whether continuing clinically assisted nutrition and hydration is in their best interests. We consider the implications for ethics, policy and practice in relation to patients with prolonged disorders of consciousness more broadly, highlighting in particular the actions that need to be taken by clinicians, inspection bodies, Clinical Commissioning Groups and Health Boards across England and Wales.