Michigan Journal of Public Affairs

‘Quality Of Life’ In A 2-Foot Casket

U.K., European Parliament should enact parental rights laws before momentum fades

By Lizzy Balboa

One of the most haunting storylines of the last two years lingers on life support — unresolved and seemingly forgotten. Alfie Evans was 23 months old when the British government condemned him to death. His quality of life, they said, was too low. Alfie was admitted to the Alder Hey Children’s Hospital 14 months earlier for seizure treatment and was subsequently diagnosed with an unidentified degenerative neurological condition. For more than a year, he remained in a semi-vegetative state with a blink or a smile as the only signs of life. His physicians attributed the activity to seizures.

Alfie’s family hoped for recovery and requested a transfer to an Italian hospital willing to prolong his life through respiratory operations. Alder Hey blocked the move, asserting that “continued ventilator support is not in Alfie’s best interest.” Given his circumstances, the hospital argued, treatment would be unlawful, “unkind and inhumane.”

The parents protested, but their grief and outrage only garnered validation for the hospital when the High Court in Liverpool permitted Alfie’s doctors to end life support. The Court of Appeal and Supreme Court corroborated, and the European Court of Human Rights declined to intervene on the Evans’ behalf. As Alfie’s desperate parents pleaded, and as the Italian Ministry of Foreign Affairs and Pope Francis urged the U.K. to delay death, the hospital shut off Alfie’s ventilator. Alfie was a ward of the High Court, and the High Court knew what was best for him.

A Pattern Worth Disrupting

Alfie wasn’t the first such victim of the state Fates. In the last few years, U.K. policy has empowered courts to overrule parent medical decisions and prescribe death for multiple children on life support. International activists have pressed to change the law to bolster parental rights and prevent more early deaths. Formal proposals, which seem to lose steam with every passing day, hoist Charlie Gard as their proverbial poster boy.

In 2017, 11-month-old Charlie was stripped of life support at the ruling of a London hospital, the High Court, the Supreme Court and the European Court of Human Rights. Charlie’s parents had requested an untested experimental treatment for an otherwise untreatable genetic condition, encephalomyopathic mitochondrial DNA depletion syndrome. A New York hospital agreed to provide the therapy, and the Gard family raised £1.3 million to fly him over.

But his own doctors — against the will of Charlie’s parents, Pope Francis and the Trump Administration — determined they should turn off life support to allow a dignified death. Charlie’s mother asked for one more week with her baby. Her request was denied.

The fatal cases gained enough activist traction to inspire two pieces of 2018 legislation. “Alfie’s Law” would empower parents to override hospitals and courts in determining what’s in the best interest of their children. The law remains latent in the European Parliament. “Charlie’s Law” would allow parents to transfer their sick children to other medical sites if they disagreed with initial treatment plans. It would also require hospitals to mediate with parents before taking legal action, and the government to provide access to clinical ethics committees. The proposed law remains before the British parliament.

The Risk of Maintaining the Status Quo

Given the recent rate at which parental-rights controversies have arisen, rights activists shouldn’t let the momentum of 2018 fade. Delaying policies could compromise more lives.

As U.K. law currently stands, parents have the responsibility — not the right — to protect their children. Courts can intervene when parents act cruelly, negligently or “blinded by the deepest love,” according to the Oxford Human Rights Hub. But this standard can conflict with domestic law, international law and the European Convention on Human Rights, which prohibit state intervention in family life without evidence of significant harm. Exceptions can be made, “for the protection of health or morals,” according to the Human Rights Act 1998. Some consider parental rights also nullified by the U.K.’s 1989 Children’s Act, which empowers and compels the state to intervene when a child is at risk of harm.

State protection from caregivers’ harm is good and justified. Children need champions, and when their parents fail to advocate for their well-being, the state must certainly step in. On these grounds, the U.S. endorses intervention policies similar to those in the U.K. The difference, though, is that most U.S. courts ruling on the “harm” principle reject parent decisions to refuse treatment, not to provide it. U.S. parents seeking extended life support for their children generally receive it, regardless of recovery prospects or extent of brain death.

U.K. courts interpret the “harm” standards differently. They leverage the defense to end life support against parent wishes. This application of the law calls to question the British definition of “harm.” It seems the courts have identified a greater “harm” than death — or at least they have forgotten that what makes “harm” undesirable in the first place is its propensity to hasten death. It remains unclear how the state’s prescription for early death protects health any better than parental aims to prolong life.

As with the “harm” argument, “quality of life” defenses for ending life support are difficult to grasp. Presumably, quality is measured on a scale spanning zero life (or “death”) to fullest life. The courts’ “quality of life” argument for ending life support suggests that non-existence — or again, death — is of higher ranking on the quality of life scale than is, well, life.

It’s difficult to see how the death-sentencing courts represent a child’s “best interest” any better than pro-life parents do. Their rulings and their logic are tragic and sad, and they should not guide future cases.

There are ways to prevent more Alfies and Charlies, to protect parental rights and preserve the dignity and endurance of vulnerable lives. “Alfie’s Law” and “Charlie’s Law” still have a heartbeat. The U.K. and European Parliament should give them a fair shot at life.

Photo by John on Flickr

Elizabeth is a first-year Master of Public Policy candidate. Before pursuing graduate studies, she worked in financial journalism, served as an AmeriCorps VISTA in Detroit high schools, and volunteered as a peace educator in D.C. schools and homeless shelters. She holds a Bachelor of Arts in journalism and Bachelor of Science in biomedical sciences from Grand Valley State University.

ryanrug

View more posts from this author