Delay is inimical to P’s welfare: guidance on clinically-assisted nutrition and hydration for PDoC patients

In a recent hearing (Case No. 1375980T, 10th June 2021), Mr Justice Hayden queried why a man had been given continued medical treatment to keep him alive in a prolonged disorder of consciousness (PDoC) for many years – despite evidence from some family members that he would not want this. It appeared that clinicians had not followed legal and professional guidance about how such decisions should be made. Whatever the complexities of this case (and I’ve written about it here), it was clear that an application to the court (if necessary) should have been made much earlier, probably around 3 years ago, back in 2018. This patient may have been subject to treatment contrary to his best interests for a very long time. The delay in making a court application was obviously profoundly troubling and frustrating for Mr Justice Hayden, who referred more than once to the professional guidance about clinically-assisted nutrition and hydration (CANH) produced by the British Medical Association and the Royal College of Physicians (published in 2018) and to his own Guidance about when to refer cases about serious medical treatment to court (published in January 2020).For me, as someone who often supports families in situations concerning CANH, the depressing thing about the case before Hayden J is not how uniquely delayed the decision-making was, necessitating judicial comment, but rather the reverse: whatever the unique features of this case in particular, the behaviour exhibited by the treating team, which evaded taking responsibility for making best interests decision for their patient, is widespread in many other units across England and Wales. Mr Justice Hayden’s frustration is shared by many others working in this area – and it begs several questions: Has the recent legal and professional guidance helped? If so, how? And if not, why not? And what more can be done to improve best interests decision-making for PDoC patients? I’m going to address these question by drawing on the work Celia Kitzinger and I have done in the Coma and Disorders of Consciousness Research Centre, which includes formal research interviews with over 100 family members of PDoC patients; delivering training about law and ethics to healthcare staff; and acting as volunteer advocates in cases where clinicians or families felt outside help was required (which we’ve written about here). My comments are also informed by conversations with healthcare practitioners from 6 different hyperacute, rehabilitation or long-term care centres, who talked with me about what was happening in their own organisations after reading my earlier blog about this case