WASHINGTON – As Charlie Gard’s struggle for life continues, his parents have expressed concern after learning that the lawyer appointed by the government to protect their son’s interests heads an organization that believes in assisted dying.
According to the London Telegraph, Victoria Butler-Cole, who represents Charlie Gard in court, is chairman of an organization called Compassion in Dying. Its sister organization, Dignity in Dying, used to be called the Voluntary Euthanasia Society.
Butler-Cole was appointed to be Charlie’s representative by Cafcass, a state organization in the United Kingdom that is supposed to act in the best interests of children involved in court cases.
A source close to Charlie’s parents, Chris Gard and Connie Yates, told the Telegraph: “The implication is obvious. It looks like a profound conflict of interest.”
Although Compassion in Dying doesn’t directly advocate for assisted suicide, its chairman and board members must support the aims of its sister organization, Dignity in Dying, which does.
A spokesman for Compassion in Dying claimed in the Telegraph that any fears raised by Butler-Cole’s association with their organization are misplaced.
“There are clear differences between this case, the work of Dignity in Dying and the work of Compassion in Dying,” the spokesman said. “The Charlie Gard case is about making decisions in the best interests of a seriously ill child.”
However, the language used in the ruling allowing the hospital to end Charlie’s life support tells a different story.
Charlie must be allowed to “die with dignity” by court order, which the organization Dignity in Dying presumably supports.
Charlie, an 11-month-old British infant, suffers from a rare genetic mutation of mitochondrial DNA depletion syndrome. Britain’s High Court has ruled that Great Ormond Street Hospital, where Charlie is being treated, should take him off life support, which is against the wishes of his parents. They have raised more than $1.8 million to bring Charlie either to the U.S. or to Rome for treatment, but the British government has denied them permission.
On Friday, details were hammered out to let an American doctor, Michio Hirano of Columbia University Medical Center in New York, come to London to give Charlie preliminary treatments.
After receiving notification on the effectiveness of these treatments, Justice Nicholas Francis will rule on July 25 whether Charlie will be able to continue being treated or if the hospital must turn off his life support.
Hirano arrived Monday to begin seeing Charlie and consulting with other experts in the case.
He testified on Thursday that Charlie’s brain cells could improve through the use of experimental nucleoside treatment. He has given Charlie at least a 10 percent chance of meaningful improvement.
Officials at Great Ormond Street Hospital tried to exclude Charlie’s parents from a meeting among experts that could decide whether he lives or dies.
WND reported last Thursday that during the early part of a court hearing, Charlie Gard’s parents stormed out because the judge claimed they had said they wanted to maintain their son’s condition as it was.
But they returned a short time later, and the judge eventually asked an American doctor, testifying via long-distance, whether he would be willing to come to the U.K. to begin treatments on Charlie.
The Daily Mail reported the parents erupted again Friday when doctors at the hospital said they wanted to have a discussion about Charlie’s future among just themselves, without the parents.
Chris Gard shouted, “He’s our son,” and Yates shook her head angrily.
Charlie’s parents took their case public after having multiple courts rule against their attempt to obtain treatment for their son.
Subsequently, both the pope and President Trump took to social media to express support for the parents.
Charlie’s parents and legal representation contest the court’s claim that Charlie’s condition cannot be improve, and he should be taken off life support.
A petition is circulating concerning Charlie’s condition, with just under 500,000 signatures, at Citizengo.org.
Bobby Schindler, the brother of Terri Schindler Schiavo, told WND Charlie’s case is not being handled correctly. He’s president of the Terri Schiavo Life & Hope Network.
Schiavo died in 2005 after a court ordered removal of her feeding tube and water at the request of her husband. Since then, Schindler has devoted himself to defending medically vulnerable people.
“Because of the nature of their fight, and the day to day uncertainty whether their child will live or die, [Charlie’s case is] reminiscent of my family’s fight to save my sister, Terri,” Schindler told WND.
Schindler believes Charlie’s struggle is vitally important in the larger struggle of parental rights against encroaching government influence in end-of-life decisions.
“I think it’s obvious to any normal observer of the news surrounding Charlie that this is a simple case of fit and competent parents being denied the right to care for their son, and an aggressive medical and legal system intent on imposing its will rather than empowering the weak and vulnerable – in this case, Charlie and his parents,” he said.
“Once these types of decisions are enshrined into its precedent – the notion, as we are seeing in Charlie’s case, that parents are not fit to determine how best to care for their son – people realize that the same thing could happen to them, and that it has literally been stated that it’s in Charlie’s best interest to die.”
Schindler sees a disturbing rise in cases like Charlie’s, which he attributes to cost-cutting initiatives.
“We currently live in a health-care system that is hyper-focused on controlling costs in terms of providing treatment,” he said. “The problem, it seems to me, is that decisions are now made on the premise that instead of providing long-term ‘costly’ care, it is much cheaper to deny care, especially if the hospital decides that the treatment is not going to have much success.
“Sadly, since we established the Terri Schiavo Life & Hope Network after Terri died, we are seeing an increase in situations like Charlie’s, which are often described as medical futility-denial of care cases,” Schindler continued. “Undoubtedly, with rising concerns in the costs, and bioethicists and ethics committees making quality of life judgments, persons need to understand the potential risks they may face and the real possibilities of being denied wanted, needed and helpful treatment.”
Schindler warns that people should learn more about their own medical rights, in case a situation like Charlie’s or Terri’s should ever happen to them.
“It is especially important today to know your rights as a patient,” he said. “Not only if you are admitted to the hospital, but whomever you appoint as your health-care surrogate that they know your rights, in the case you don’t have the capacities to make medical decisions yourself. It could be the difference whether you receive the care you need.”
WND reported earlier this year on the 12th anniversary of the death of Terri Schiavo. The media and her husband, Michael Schiavo, asserted Terri was in a “persistent vegetative state,” but her parents and brother, Bobby Schindler, insisted otherwise, claiming she was able to swallow, laugh and express love for her family.
In 1990, Terri, at age 26, collapsed in her St. Petersburg, Florida, home for a reason that still hasn’t been explained and was taken to a hospital by first responders who feared she was dead. She was comatose for a time, then started responding and was moved to a care center. Her family members say she was getting better before her court-ordered starvation.
WND has been reporting on the Terri Schiavo story since 2002. Read WND’s unparalleled, in-depth coverage of her life-and-death fight, including more than 150 original stories and columns.