Parental Decisions and Court Jurisdiction: Best Interests or Significant Harm?

Abstract

In 2017, the plight of a desperately ill British baby captured attention around the world. Charlie Gard had been born with a severe mitochondrial condition that progressively caused irreversible brain damage and left him unable to hear, move or breathe independently. His doctors considered that this damage was irreversible and would soon be fatal. In consequence, his medical team at Great Ormond Street Hospital NHS Foundation Trust (GOSH) concluded that it would be in Charlie's best interests for life-sustaining treatment to be withdrawn to allow him to have a peaceful and dignified death. Charlie's devoted parents disagreed. They had scoured the world to find a treatment that might improve his condition and had found hope in nucleoside bypass therapy. This experimental treatment, as yet untested on people or even animals with Charlie's condition, was offered by a specialist in the USA who considered that there was a 'theoretical possibility' that it may be of benefit to Charlie. Having raised the costs through crowdfunding, the parents intended to remove Charlie to the USA to start treatment. Unable to resolve the disagreement with the parents, GOSH applied to the court for a declaration that that it was lawful, and in Charlie's best interests, for him not to be given nucleoside therapy and for ventilation to be withdrawn. The ensuing court proceedings took place in the intense glare of media attention and frenzied debate on social media. The parents received support from around the world, including from the Pope and from the President of the USA. Nonetheless, at every stage of the judicial process 2 the courts' assessment of Charlie's best interests accorded with that of his doctors. Charlie's life-support was withdrawn just one week before his first birthday.To many observers the courts' decisions in Gard were difficult to comprehend. Although the proposed treatment was experimental in nature, many felt that it was wrong for the courts to take that chance from Charlie and cruel to thwart his parents' remaining hope. 3 More fundamentally, to others it was not clear why the courts were involved at all. 4 The parents were undoubtedly devoted to their son and acting from a loving and sincere desire to find the best treatment for him. This was not a case in which the state needed to step in to remove a child from abusive or neglectful parents who had forfeited their right to make decisions for their 1 This article was first published as Chapter 3 in I. Goold, J. Herring and C. Auckland (eds) Parental Rights, Best Interests and Significant Harms: Medial Decision-Making on Behalf of Children Post-Great Ormond Street Hospital v Gard (2019, Hart). It is reprinted here, with minor modifications, by kind permission of Hart Publishing. 2 The procedural history of the case is complex and collectively this article refers to the case as Gard. The High Court granted the declarations sought by GOSH: Great Ormond Street Hospital for Children NHS Foundation Trust v Yates & Gard [2017] EWHC 972 (Fam). This decision was upheld...

Re‐Evaluating ‘Best Interests’ in the Wake of Raqeeb v Barts NHS Foundation Trust & Anors

“…It might be questioned whether such a move is necessary, given evidence that both clinicians, 76 and the courts, 77 do already attach importance to parental views when determining best interests. Indeed some suggest it may do more harm than good.…”