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Ten-month old Charlie Gard was sentenced to death by a UK court for the crime of having been born with an extremely rare condition called mitochondrial depletion syndrome (MDS). Charlie is only one of 16 people ever known to have this disease. When Connie and Chris, Charlie’s parents, learned that their son had this condition, they searched for a treatment that would prolong his life. They found a doctor in the U.S. willing to provide an experimental therapy (nucleoside bypass therapy) that has been successful in 80% of infants with the same genetic mutation. But the so-called medical experts in the UK said it was an experimental move and would not help the baby. Also a hospital in the Vatican City offered to provide the same treatment. In a short time, Charlie’s parents quickly raised $2.2 million (according to Sky News) for Charlie’s transport and treatment in the United States.
The Great Ormond Street Hospital in London refused to release Charlie and instead filed a lawsuit so they could take Charlie off of the ventilator that was keeping him alive. Seven months later the judges agreed with the hospital, ruling that Charlie should be allowed to die—with “dignity”. The chief judge said Charlie shouldn’t be made to “suffer,” even though doctors could not produce a single piece of evidence that Charlie was suffering. His parents, who spent thousands of hours with their son, testified that Charlie was not in pain. The chief judge, even as he commended Charlie’s parents for their dedication ruled, agreeing with the hospital, that Charlie be taken off life support because it was in Charlie’s “best interest,” which he determined to be the baby’s death. The judges’ delay in deciding the case directly contributed to Charlie’s condition reaching a state were the damage caused to his body became irreversible. Then the judge ordered that Charlie be sent to a hospice to die. His parents appealed to the judge to allow Charlie to go home to die. The judge relented and allowed Charlie to go home. Shortly afterwards Charlie died at home in his mother’s arms.
Afterwards Charlie’s parents accused the London hospital of keeping their son as a “prisoner” in the hospital. “Our parental rights have been completely stripped — the minute we took him in there, in hindsight, we lost him,” Charlie Gard’s father said.
Lfe Legal is appalled that a court of law would side with a hospital aggressively forbidding the loving parents of a sick baby to seek treatment that could have prolonged or even saved his life. What a judge in this case never bothered to consider is that the hospital’s posturing against Charlie Gard’s parents and the court’s delay in adjudicating the case directly contributed to Charlie’s decline,” said Alexandra Snyder, Executive Director of the Life Legal Defense Foundation. “There is nothing dignified about a hospital holding a patient captive until he is unable to benefit from treatment that would not have cost the hospital a cent.”
Life Legal has intervened in hundreds of cases involving the refusal to provide—or, as in this case, permit—life-sustaining treatment. What these involuntary euthanasia cases reveal is an alarming discrimination against the sick and disabled, who are sacrificed at the altars of money, utilitarianism and the myth of “death with dignity.”
Some Thoughts After Charlie Gard's Involuntary Euthanasia
Alexandra Snyder, Executive Director of the Life Legal Foundation
“Life Legal is appalled that a court of law would side with a hospital aggressively forbidding the loving parents of a sick baby to seek treatment that could have prolonged or even saved his life. What the judge in this case never bothered to consider is that the hospital’s posturing against Charlie Gard’s parents and the court’s delay in adjudicating the case directly contributed to Charlie’s decline. There is nothing dignified about a hospital holding a patient captive until he or she is unable to benefit from treatment that would not have cost the hospital a cent.”
Life Legal has intervened in hundreds of cases involving the refusal to provide—or, as in this case, permit—life-sustaining treatment. What these cases reveal is alarming discrimination against the sick and disabled, who are sacrificed at the twin altars of utilitarianism and “death with dignity.” We can only hope that Charlie Gard’s case will serve as the catalyst for a long-overdue global conversation about what dignity actually entails.
Wesley Smith wrote in The National Review online on July 4, 2017
Some have commented on the case as if that is a product of the UK’s socialized medical system. It’s not. It is a product of utilitarian bioethics advocacy for the right to refuse wanted life-sustaining treatment — called “futile care” — based on the doctor’s or a hospital bioethics committee’s values on the moral worth of the ill patient’s life and/or the high cost of care.
Similar authoritarian care withdrawals as has been imposed on Charlie Gard have happened here too — and to very ill patients of all ages.
There was the Baby Ryan case in Seattle, in which a hospital actually reported a family for child abuse because they obtained an injunction against removing kidney dialysis. In the end, the doctors were wrong that death was imminent. The boy lived four years as a happy, if sickly child, who loved to give high-fives.
The parents of Baby Terry in Michigan were stripped of their parental rights for refusing to consent to withdrawing life support.
The doctors treating Baby Joseph in Canada insisted on the right to remove life support from a terminally ill baby and refused a tracheotomy that would have permitted the baby to go home to die with his family. Priests for Life eventually paid for the baby to be flown to the US for the procedure, which was successful. Joseph died several months later in his parents arms.
The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies — and others facing futile-care impositions — ultimately owned by the hospital and the state?
Again. This it is about cost containment — including in free-market systems — and the attempt by the bioethics movement and medical intelligentsia to replace the equality/sanctity of life ethic with a more utilitarian “quality of life” view.
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