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Is ‘best interests’ the right standard in cases like that of Charlie Gard?
  1. Robert D Truog
  1. Center for Bioethics, Harvard Medical School, Boston, MA 02115, USA
  1. Correspondence to Dr Robert D Truog, Center for Bioethics, Harvard Medical School, Boston, MA 02115, USA; robert_truog{at}hms.harvard.edu

Abstract

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children.

  • allowing minors to die
  • attitudes toward death
  • bills, laws and cases
  • disabilities
  • minors/parental consent

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Savulescu and colleagues provide interesting insights into the views of the UK public on decision making for children like Charlie Gard.1 In that case and others like it, both the clinicians and the courts made decisions based on their view of the child’s best interests. In this commentary, I will reflect on decision making for similar cases in the USA and suggest that the best interests standard does not reflect how these cases are actually managed, either in hospitals or in the courts.

In the case of Charlie Gard, the courts refused to permit Charlie’s parents to transfer him to the USA for experimental treatment, based on the medical and legal view that continuation of life support was not in his best interests.2 In short, the courts saw their role as protecting Charlie from his own parents and their views about what was best for him.

As the case evolved, my perception was that most Americans were flummoxed by the way it was being handled by Great Ormond Street Hospital and the UK courts. After the family had raised more than a million dollars in funding, and it was clear that that transfer to Columbia University would not cost the NHS any additional money, my impression was that most Americans believed the hospital and government should have stepped aside and allowed the parents to take Charlie to the USA.

In fact, while the ‘best interests standard’ is the legal benchmark in both the USA and the UK, it does not cohere with how clinical decisions are actually made in the USA.3 As an ethical principle, it has also been criticised in favour of other alternatives. For example, literal application of the best interests standard would set an unrealistically high bar for parental decision making, requiring parents to make whatever sacrifices necessary in order to give their child the best education, housing, food and entertainment. In response, other standards have been developed, including the model of ‘constrained parental autonomy’4 or the ‘zone of parental discretion’.5 The model that I find most compelling, however, in terms of understanding how decisions are actually made in American hospitals and courts, is the ‘harm principle’. As applied to cases like that of Charlie Gard, the harm principle would defer all decision making to the parents of the child, unless it could be shown that their decisions would be harmful to the child.6

The harm principle provides a better guide to understanding actual practice in American hospitals than does the best interests standard. While vaccination is clearly in a child’s best interests, parents have permission to refuse them, given that the chance of a child actually acquiring the disease the vaccine is intended to prevent is quite low, given the effectiveness of herd immunity. On the other hand, parents may not refuse to have a lumbar puncture performed if the clinicians believe the child has a significant risk of having meningitis. If the parents refuse, a court order to perform that test is obtained to prevent the parents from exposing the child to potentially serious harm.

Court cases also follow this standard. Parents are almost always supported by the courts in their demands to continue life-sustaining treatments, even when their child suffers from extreme degrees of neurological injury, so long as a willing provider can be found. Jahi McMath, a 9-year-old who was pronounced brain dead after sustaining a cardiac arrest following a tonsillectomy, was allowed to be transferred to a willing provider in New Jersey for continued care, even though a death certificate in California stated that she was legally dead!7

Demonstrating that parental decisions are in violation of the harm principle can be particularly difficult in cases of severe neurological injury, since such patients may not be capable of experiencing the suffering that might otherwise be associated with life prolonging treatments. This was an area of contention in the Charlie Gard case. Although the clinicians believed that continued treatment was causing him pain and suffering, his parents insisted that he looked comfortable and peaceful to them.

A notable exception to the harm principle in American practice, however, is when withdrawal of life-sustaining treatments is justified by an appeal to ‘futility’ rather than ‘harm’. For example, under Texas law, life-sustaining treatments may be withdrawn when there is no reasonable hope of benefit, as determined by a hospital committee. Consider, for example, the case of Emilio Gonzales, an infant with Leigh syndrome, which is a severe mitochondrial disorder that invariably leads to progressive neurological deterioration and death. When his physicians at Austin Children’s Hospital refused to perform a tracheostomy to prolong his life, they were supported in that decision under the Texas futility law.8 The rationale was not based on an assessment of his best interests, but rather on a resource-based judgement that the procedure would not offer him a benefit.

Decision making for children with severe neurological injury is one of the most striking differences (among many) between the healthcare systems in the USA and the UK. I think there is little doubt that if Charlie Gard had been treated at any children’s hospital in the USA, his parents would have received permission to transfer him to Columbia to receive experimental treatment. Whether such differences exist in public attitudes between the two countries is unknown. The authors did note, however, that the UK research participants were generally reluctant to overrule the decisions of parents. In fact, the only case where participants believed parental wishes should be overruled was in cases where the child was completely unaware. This makes me wonder if, in terms of understanding the public’s views on these cases, the most relevant question is not what is in the child’s best interests, but instead whether the parents are making decisions that will cause harm to their child.

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Footnotes

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Commissioned; internally peer reviewed.

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