Parental rights vs. the law of the land

In July last year, U.S. President Donald Trump tweeted offering help to a critically ill, 10-month old British baby called Charlie Gard, whose parents were eager for him to be moved to the U.S. to take part in a therapy trial for a rare, life-limiting genetic disorder. The case of Gard captured attention across the globe — Pope Francis called for the boy’s parents to be able to “accompany and treat their child until the end” with a Vatican-owned hospital raising the possibility of him going there. Doctors at the hospital at which the boy was based, Great Ormond Street, pushed for the boy to be allowed to die peacefully and in dignity, resulting in a string of hearings right up to Britain’s Supreme Court. The case attracted much attention from the public too, with staff being verbally abused on the street. The boy died that July after life-support was withdrawn, in line with the ruling.

Months on, the case continues to have reverberations within Britain’s health-care system, with doctors particularly in paediatrics pointing to a rise in the number of parents contesting their diagnoses and treatments. It also raises questions on medical ethics. Director of medical ethics at Oxford University Dominic Wilkinson pointed to what he believed were two “unreasonable arguments” that were gaining ground as a result of the case: that parents should be the “ultimate decision-makers” about medical decisions for their children, and that it was “never acceptable to withdraw or withhold medical treatment” from a patient if treatment would continue to keep them alive.

Frenzied reaction

This month, another case has gripped the headlines in Britain: that of Alfie Evans, a toddler at Alder Hey Children’s Hospital in the northern city of Liverpool. His parents have been attempting to take their son to a hospital in Rome, against medical advice, for treatment for a degenerative neurological condition. The case has provoked a frenzied reaction on social media, with a Facebook group ‘Alfie’s Army’, with over 3,60,000 members, rallying supporters. The issue became increasingly politicised as one Conservative MP sought intervention from the government, after Evans was awarded Italian citizenship.

The two cases are far from isolated. “Sadly, many of us are also becoming increasingly familiar with the need to engage with the courts where we are unable to reach a consensus with children’s families in similar scenarios,” wrote the U.K.’s Paediatric Care Society in a letter of support to the hospital in Liverpool. The situation has been exacerbated by a bleed between the legal situation in Britain and the U.S., with the former placing emphasis on parental rights, and the U.K., where the “law takes the best interests of the child as definitive and assumes parents make the decision in their best interest,” with parental responsibilities and duties having the emphasis rather than rights, says Dr. Iain Brassington, senior lecturer at the Centre for Social Ethics and Policy at Manchester University.

Both cases were also influenced by opportunistic elements — in the Gard case, U.S. lawmakers intent on rubbishing Obamacare, and in the Evans case, a controversial Christian pro-life body that is funding the legal challenge. While the long-term implications for the British health-care system and cultural attitudes towards it remain to be seen, the suggestions in some quarters that the efforts of the hospital could amount to euthanasia are particularly dangerous, and misplaced, he added. “It’s the kind of scare tactic that does nobody any favours.”

Vidya Ram works for The Hindu and is based in London