Court bat­tle over UK baby raises eth­i­cal co­nun­drum

Kuwait Times - - INTERNATIONAL -

A five-month le­gal bat­tle over the fate of a ter­mi­nally-ill Bri­tish baby that drew the at­ten­tion of Pope Fran­cis and US Pres­i­dent Don­ald Trump has also stoked an of­ten an­gry de­bate about med­i­cal ethics and the courts. Char­lie Gard’s par­ents waged a high-pro­file cam­paign with the help of so­cial me­dia and Bri­tain’s tabloids for him to re­ceive ex­per­i­men­tal treat­ment in the United States, strik­ing a chord world­wide.

They are now spend­ing the last few days with their 11-month-old son be­fore life sup­port is with­drawn at a hos­pi­tal in Lon­don af­ter ac­knowl­edg­ing in court on Mon­day that ther­apy could no longer help him. “Noone wanted this out­come. No-one be­lieves this out­come was in Char­lie’s best in­ter­ests,” said Ju­lian Savulescu, di­rec­tor of the Ue­hiro Cen­tre for Prac­ti­cal Ethics at the Univer­sity of Ox­ford. “There has got to be a bet­ter way.”

Char­lie was born on Au­gust 4 last year with a rare form of mi­to­chon­drial dis­ease that causes pro­gres­sive mus­cle weak­ness in the heart and other key or­gans and is only able to sur­vive with life sup­port. His par­ents raised money to take their baby to the United States through crowd­fund­ing but were pre­vented from do­ing so by the hos­pi­tal and first went to court in March to try and over­turn that de­ci­sion. Their ap­peals went all the way to the Supreme Court but were turned down at all stages of the ju­di­cial process and judges at the Euro­pean Court of Hu­man Rights in Strasbourg re­fused to in­ter­vene.

Who should de­cide?

Char­lie was due to be taken off life sup­port be­fore the Vat­i­can in­ter­vened on July 2 with a state­ment in which Pope Fran­cis ex­pressed his sup­port for the par­ents and said he hoped doc­tors would al­low them to “care for their child un­til the end”. Trump of­fered his sup­port the fol­low­ing day, say­ing in a tweet that he would be “de­lighted” to help.

A Vat­i­can-run hos­pi­tal in Rome and a US hos­pi­tal then of­fered to treat Char­lie and Lon­don’s Great Or­mond Street Hos­pi­tal went to court to seek a rul­ing on whether to al­low him to un­dergo ex­per­i­men­tal ther­apy. There have also been small protests by sup­port­ers of Char­lie’s par­ents-a group call­ing it­self “Char­lie’s Army”-out­side Buck­ing­ham Palace and Down­ing Street call­ing for the hos­pi­tal to lis­ten to the par­ents. Savulescu said so­cial me­dia had given greater power to par­ents to make their case heard.

“The ques­tion of who should de­cide is le­git­i­mate. Some peo­ple have wrongly con­cluded that these de­ci­sions should only be up to par­ents. “But at the same time it is right that doc­tors, sci­en­tific ex­perts and the courts should not be con­sid­ered almighty, be­yond ques­tion or ac­count.” He said doc­tors should only ac­ti­vate le­gal mech­a­nisms if “there is dis­agree­ment be­tween the par­ents, or they are go­ing to an un­safe place or they are very con­fi­dent the par­ents’ choice is un­rea­son­able”. “The prob­lem is not who has the power, it is how it is used and the need for ro­bust, and hum­ble, eth­i­cal de­lib­er­a­tion,” he added.

Char­lie’s case is far from the only med­i­cal ethics case to end up in court in Bri­tain and else­where. In France, the case of a man who was left se­verely brain dam­aged and quad­ri­plegic as a re­sult of a 2008 road ac­ci­dent has been in the courts since 2014. Fam­ily mem­bers of Vin­cent Lam­bert are di­vided on whether to with­draw life sup­port.

Role for mediation

Dominic Wilkinson, a con­sul­tant neona­tol­o­gist and pro­fes­sor of med­i­cal ethics at Ox­ford Univer­sity said court re­views in cases like Char­lie Gard’s was “not ideal”. “It is ad­ver­sar­ial, costly and lengthy,” he said. “We need to find bet­ter ways to avoid cases of dis­agree­ment from com­ing to court. There is an im­por­tant role for mediation to help par­ents and doc­tors where they have reached an im­passe.”

But Ian Kennedy, emer­i­tus pro­fes­sor at Univer­sity Col­lege Lon­don said the courts must be re­spected. “Par­ents can­not al­ways be the ul­ti­mate ar­biters of their chil­dren’s in­ter­ests,” he wrote in The Guardian. “We are not in the realm of there be­ing a right an­swer. We are in the realm of judg­ment, rea­soned judg­ment, and we look to the courts to pro­vide this.” Kennedy warned that cam­paigns against the courts were “in­creas­ingly a fea­ture of mod­ern dis­course”. “It is one thing to com­ment on or crit­i­cize a par­tic­u­lar de­ci­sion. It is a very dif­fer­ent thing to at­tack the in­sti­tu­tion of the courts.”

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