d*2
发帖数: 2053 | 1 【 以下文字转载自 USANews 讨论区 】
发信人: db2 (postgres), 信区: USANews
标 题: 欧洲没有人权！
发信站: BBS 未名空间站 (Mon Jul 3 18:25:46 2017, 美东)
https://www.nytimes.com/2017/07/03/world/europe/uk-trump-pope-francis-
charlie-gard.html
人家自己掏钱送美国治病也不行么？
LONDON — Charlie Gard, who turns 11 months old on Tuesday, was born with an
extremely rare genetic disease. He is blind and deaf, and he cannot breathe
or move on his own. He suffers from persistent epileptic seizures.
Now he is at the center of a global debate, drawing in the Vatican and
President Trump, over what medical treatment, if any, he is entitled to
receive, and who decides — his family, his doctors or the courts.
“These terrible decisions have to be made all the time,” said Jonathan D.
Moreno, a professor of ethics at the University of Pennsylvania. “It is
very unusual for a case like this to explode on the global stage. They raise
difficult moral and ethical questions.”
The London hospital that is treating Charlie has asked permission to remove
him from life support. His parents want to take him to the United States,
where they believe an experimental treatment has a chance — however remote
— of prolonging his life, even though the disease has no cure.
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Three courts in Britain agreed with the hospital, as did the European Court
of Human Rights, which last week rejected a last-ditch appeal by Charlie’s
parents.
But Pope Francis and Mr. Trump have also weighed in, adding another
dimension to an extraordinarily thorny bioethical and legal dispute that
pits Britain’s medical and judicial establishment against the wishes of the
child’s parents.
Judges in the case have acknowledged that the case highlights differences in
law and medicine — and an American willingness to try anything, however
unlikely the possibility of success — but have held that prolonging the
infant’s life would be inhumane and unreasonable. The case echoes the one
of Terri Schiavo, a Florida woman who was left in a persistent vegetative
state after a cardiac arrest and was also the subject of a court battle.
A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope
had been following the parents’ case “with affection and sadness,”
praying “that their desire to accompany and care for their own child to the
end is not ignored.”
Mr. Trump, who was not known to have previously expressed a view on the
matter, wrote on Twitter on Monday that if the United States could help, “
we would be delighted to do so.”
Both the pope and the president stopped short of criticizing the court
rulings or the hospital. Helen Aguirre Ferré, the director of the White
House office of media affairs, said Mr. Trump had decided to speak out after
he learned about “this heartbreaking situation.” Mr. Trump has not spoken
with the family, she said, and does not want “to pressure them in any way.”
“The president is just trying to be helpful if at all possible,” she added.
Charlie was born on Aug. 4, 2016, with encephalomyopathic mitochondrial DNA
depletion syndrome. He is thought to be one of only 16 children globally
with the condition, the result of a genetic mutation.
Brendan Lee, the chairman of the department of molecular and human genetics
at Baylor College of Medicine, who is not involved the case, said in a phone
interview that mitochondrial depletion syndrome has no cure. “Treatments
involve different types of vitamin supplementation, but none have been shown
to definitively work through studies,” he said.
Charlie’s parents, Connie Yates and Chris Gard, both in their 30s, have
been waging a long and wrenching legal battle to keep him alive. They have
raised more than 1.3 million pounds, or about $1.7 million, to help finance
experimental treatment in the United States. There is also an international
campaign, with an online petition and there have been street protests in
front of Buckingham Palace.
Charlie has been treated since October at Great Ormond Street Hospital,
where doctors eventually decided that withdrawing life support was the only
justifiable option. “Although Charlie’s parents have parental
responsibility, overriding control is by law vested in the court exercising
its independent and objective judgment in the child’s best interests,” the
hospital said in a statement laying out its position.
Siding with the hospital were the High Court, on April 11; the Court of
Appeal, on May 25; and the Supreme Court of the United Kingdom, on June 8.
The High Court ruled that Charlie would face significant harm if his
suffering were to be prolonged without any realistic prospect of improvement
. Moreover, it said the experimental treatment, known as nucleoside therapy,
would not be effective.
Money is not at issue; an academic medical center in the United States has
offered to provide the experimental treatment. But a neurologist at the
hospital, who has offered to oversee the treatment, told the court by
telephone: “I can understand the opinion that he is so severely affected by
encephalopathy that any attempt at therapy would be futile. I agree that it
is very unlikely that he will improve with that therapy.”
Neither the hospital nor the neurologist was identified in court documents,
and the White House has declined to identify either.
The Court of Human Rights ruled last week that the British courts had acted
appropriately in concluding that “it was most likely Charlie was being
exposed to continued pain, suffering and distress, and that undergoing
experimental treatment with no prospects of success would offer no benefit,
and continue to cause him significant harm.”
The case has drawn attention to important differences in legal systems.
Claire Fenton-Glynn, a legal scholar at the University of Cambridge who
studies children’s rights, said that under British law, the courts were the
final arbiter in medical disputes about the treatment of children.
She noted a 2001 case of conjoined twins, Jodie and Mary, who were born
sharing an aorta. Separating the twins would lead to the death of the weaker
twin; if they were not separated, both would die. A court ruled that the
twins should be separated against the wishes of their parents; as expected,
one died.
Courts in the United States are less inclined to get involved when there are
disputes between parents and doctors, said Professor Moreno of the
University of Pennsylvania, stressing that it was usually left to doctors,
in consultation with parents, to decide on a child’s treatment.
He noted the case of Baby Jane Doe, who was born in 1983 with spina bifida
and whose parents declined to approve surgery to prolong her life. That case
led to a law, signed by President Ronald Reagan, that defined instances in
which withholding medical treatment from infants could be considered child
abuse, but also provided that in certain cases doctors and parents might
choose to withhold treatment from seriously handicapped babies when such
action would merely prolong dying.
G. Kevin Donovan, the director of the Pellegrino Center for Clinic Bioethics
at Georgetown University Medical Center and a professor of pediatrics, said
that in the United States, if parents insisted on continuing life-
prolonging treatment against a doctor’s advice, the child would simply be
transferred to another institution willing to comply with the parents’
wishes.
“It doesn’t seem to be a supportable position morally or ethically,” he
said of the stance taken by the hospital in London, adding that what is
legal and what is ethical are not always the same.
In the Schiavo case, her husband, who was her legal guardian, wanted to have
her feeding tube removed, but her parents disagreed, setting off a seven-
year fight that ended in 2005, after courts ruled in the husband’s favor.
Life support was removed from Ms. Schiavo, who died at 41.
In that case, too, the pope, then John Paul II, and the president, George W.
Bush, weighed in. Mr. Bush signed an act of Congress allowing federal
courts to intercede in the case. But their interventions did not ultimately
affect the outcome.
There was no immediate response to Mr. Trump’s statement from Charlie’s
parents, who last week appeared to accept the finality of the courts’
rulings. Photographs of the couple sleeping with their sick child have
circulated on social media recently.
“We are really grateful for all the support from the public at this
extremely difficult time,” Ms. Yates said on Friday. “We’re making
precious memories that we can treasure forever with very heavy hearts.
Please respect our privacy while we prepare to say the final goodbye to our
son Charlie.”
There was also no immediate reaction from the hospital.
“In Charlie’s case we have been discussing for many months how the
withdrawal of treatment may work,” the hospital said. “There would be no
rush for any action to be taken immediately.” It added that it would
consult the family and that “discussions and planning in these situations
usually take some days.” |
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