Gard case eclipses British man’s fight for right to die
Conway, whose body is declining, wants to control his death
Charlie Gard’s parents are spending their “last precious moments” with their terminally ill son after withdrawing from a legal battle to take him to the United States for treatment. It is a heart-wrenching case. It also overshadowed a separate legal challenge in the same court — of a man who wants the right to die.
Noel Conway, 67, has motor neuron disease, which progressively damages the nervous system. He is seeking permission to let a British doctor prescribe him a fatal drug that he will take when his condition deteriorates. He wants to “say goodbye at the right time.”
In a recent interview with the BBC, Conway said he did not want to be in a “zombie-like condition, suffering both physically and psychologically.”
While the infant’s plight has received massive international attention and Conway’s has not, the legal roots of the two cases are intertwined: In Britain, the courts make right-to-life decisions, not the patients or families, as is the case in the United States.
Conway’s case, which Britain’s High Court is still hearing, is different from Charlie’s.
For a start, Charlie is too young to be his own advocate. The 11month-old has a rare genetic disorder that has left him with brain damage and unable to move, see or hear.
His parents wanted him to try a radical untested therapy offered by Michio Hirano, a U.S. neurologist. The baby’s British doctors did not think it would work and could even prolong his suffering. The parents ended their legal fight Monday after Hirano advised them it was too late to try the treatment and it wouldn’t work.
Great Ormond Street Hospital, where Charlie has been treated for the past seven months, has not said when it will switch off his life-support machines, but Char- lie’s father Chris Gard, 32, said Monday it would be before his first birthday on Aug. 4.
“Mummy and Daddy love you so much Charlie,” Gard said outside the High Court in London. “We always have and we always will. We are so sorry we couldn’t save you.”
On Tuesday, Charlie’s parents told a separate court hearing that they want to bring their son home to die.
Charlie’s parents ended up in court because they disagreed with the hospital’s decision to withdraw treatment and prevent them from exploring an alternative therapy abroad.
In the U.S., unless there is a dispute between family members over how an under-age patient or someone who can’t make an informed decision about how to be treated, that choice is typically made by the family, according to G. Kevin Donovan, an expert on biomedical ethics and a professor at Georgetown University Medical School.
“Assisted suicide,” encouraging or helping another person to kill themselves, which is essentially what Conway is asking the High Court to grant, is illegal under English law.
It is also prohibited in the U.S., with the exception of California, Colorado, Oregon, Vermont, Washington, the District of Columbia and in some instances Montana, according to Death With Dignity, an assisted-dying advocacy group.
Conway brought his case to change the law so adults who are terminally ill with less than six months to live and want to die would be allowed to do so. Like the Charlie Gard case, the legal odds are stacked against him. The last major court challenge of the law, three years ago, was turned down by Britain’s Supreme Court. In 2015, British lawmakers voted against allowing “assisted suicide” in some parts of the United Kingdom.
“Noel would like the choice to be able to die with dignity. The world has changed phenomenally in the past few decades with many medical advances, but the law on assisted dying for those who are terminally ill hasn’t changed for more than 50 years,” Conway’s lawyer, Yogi Amin, said in a statement.
“I will be quadriplegic. I could be virtually catatonic and conceivably be in a locked-in syndrome — that to me would be a living hell,” Conway told the BBC.
“I could be virtually catatonic and conceivably be in a locked-in syndrome — that to me would be a living hell.” Noel Conway