“The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest,” she said.
Full Answer
Will Charlie Gard be admitted to hospital?
"New York hospital offers to admit Charlie Gard, baby at center of life-and-death legal fight". STAT. ^ Bilefsky, Dan (7 August 2017). "For Parents of Children Like Charlie Gard, Learning to 'Redefine Hope ' ".
What does Charlie Gard’s case say about ethical issues in healthcare?
Charlie Gard’s case raises significant ethical questions about health care, experimental treatment, quality of life, and end-of-life decision-making. It is a sad reality that families all around the globe must confront such terrible situations every day.
Is experimental treatment for Charlie Gard worth it?
He cites two reasons for these views; "Experimental treatment for Charlie Gard is associated with significant side effects such that it is highly likely not to be in his interests to provide it." and that "in January [the Doctors] could not have predicted that 6 months and 4 court judgments later treatment would still be continuing".
Did the hospital block Charlie Gard's'final wish'?
"Charlie Gard's parents accuse hospital of blocking 'final wish' for baby to be allowed home to die". The Telegraph. ^ "Charlie Gard hospice move approved". BBC News. 27 July 2017.
Why was Charlie Gard denied treatment?
They felt that Charlie's quality of life was so poor that “he should not be subject to long term ventilation”. The ethics committee supported the medical team's assessment that Charlie should not have a tracheostomy. There is no cure for MDDS, and no proven treatment for Charlie's severe form of the illness.
What condition did Charlie Gard have?
The case of baby Charlie Gard touched hearts around the world in 2017. His parents, Connie Yates and Chris Gard, were locked in a high-profile legal battle with medical professionals over Charlie's care, who was suffering from the rare genetic disorder - mitochondrial DNA depletion syndrome (MDDS).
What hospital was Charlie Gard?
Great Ormond Street HospitalIn October 2016, Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service (NHS) children's hospital, because he was failing to thrive and his breathing was shallow. He was placed on mechanical ventilation and MDDS was diagnosed.
What is mitochondrial DNA depletion syndrome?
Mitochondrial Depletion Syndrome (MDS) refers to a group of rare genetic disorders that limit the number of mitochondria inside of cells. Mitochondria are energy generators that power the function of cells in the body. They create more than 90% of the energy in our cells.
What is nucleoside bypass therapy?
Nucleoside bypass therapy: an experimental treatment designed to restore the normal number of deoxynucleotides (dNTPs) in the mitochondria of cells in patients with certain forms of mitochondrial DNA depletion syndrome. dNTPs are components of DNA.
Who started Charlies law?
Over the past nine months, Charlie's parents, Connie Yates and Chris Gard, have been working with NHS medical professionals, world-leading ethicists and legal experts to develop draft legislation that will prevent further long and painful conflicts between hospitals and families with sick children.
Is tafida raqeeb still alive?
Two and a half years after a blood vessel suddenly burst in her brain, Raqeeb is alive, having defied the gloomy predictions of her UK doctors. In 2019, a UK High Court rejected an argument by medical professionals that Raqeeb could not be helped and should therefore have her life support turned off.
What are the 4 pillars of medical ethics?
There are four pillars of medical ethics which are defined as follows:Autonomy – respect for the patient's right to self-determination.Beneficence – the duty to 'do good'Non-Maleficence – the duty to 'not do bad'Justice – to treat all people equally and equitably.
What most Americans found unusual and perhaps radical about the Charlie Gard decision?
What most Americans found unusual “and perhaps radical about (the Charlie Gard) decision was, the family wasn’t asking the hospital to continue treatment or the National Health Service to pay for it. They said, ‘We have the money. We have a doctor in the US who’s willing to do it. Just let us go,’ ” Lantos said.
When did Charlie Gard's parents leave the court?
LONDON, ENGLAND - APRIL 05: Parents of Charlie Gard, Chris Gard and Connie Yates, leave the Royal Courts of Justice on April 5, 2017 in London, United Kingdom. The crowdfunding campaign raising money for treatment in the US for eight month old Charlie Gard reached its target of £1.2million this weekend.
What happens if a family member decides a procedure is futile?
If the members decide that a procedure is futile, doctors can withdraw or refuse treatment against family wishes. The policy evolved into the Texas Advance Directives Act, which won bipartisan support and was signed into law in 1999 by then-Gov. George W. Bush.
What is Charlie's condition?
Charlie was born with mitochondrial DNA depletion syndrome, a rare condition involving weakened muscles and organ dysfunction , among other symptoms. Because Charlie’s prognosis is so poor, his doctors at Great Ormond Street Hospital in London want to take him off life support. Charlie has no hope of surviving, they say, and he should be allowed to die in dignity.
When did the parents of a terminally ill baby lose their legal battle?
The parents of a terminally-ill baby boy lost the final stage of their legal battle on Tuesday, June27, 2017 to take him out of a British hospital to receive treatment in the U.S., after a European court agreed with previous rulings that the baby should be taken off life support.
Did the hospital stop Charlie's life support?
The European court ruled June 27 that the hospital could discontinue Charlie’s life support. Since then, US President Donald Trump and Pope Francis have offered help to Charlie and his parents.
Who talked to Charlie's parents and Charlie's doctors?
The only way to do that is to gather as much information as possible,” Fenton-Glynn said. A judge talked to Charlie’s parents and Charlie’s doctors. The American doctor as well as independent experts were consulted.
Who is the mother of Charlie Gard?
Connie Yates, mother of terminally ill baby Charlie Gard, carries a stuffed animal after delivering a petition of signatures supporting their case to the Great Ormond Street Hospital for Children in London on Sunday. Tolga Akmen/AFP/Getty Images)
Why does Charlie's parents want him to stay on life support?
Charlie’s parents want him to stay on life support so they can try an experimental treatment. What may be disturbing to Americans is the idea ...
What is Charlie's case?
Charlie’s case is somewhat complicated by an extra safeguard in British law. Under the Children Act of 1989, patients in Charlie’s situation can be assigned their own independent legal representative to ensure that their interests are met, rather than the interests of their families. Charlie’s guardian agreed that life support should be withdrawn, ...
What is disturbing to Americans?
What may be disturbing to Americans is the idea that a legal body can decide to withdraw life-sustaining treatment from a patient. At its heart, this is a classic ethical issue. As someone who has served as a clinical ethicist, I can tell you that such cases occur often in hospitals across America.
Where does quality of life decisions come from?
In America, however, numerous state laws explicitly state that quality-of-life determinations and decisions about withdrawing life-sustaining care must come from the patient, his or her family, or another available surrogate, as in New York’s Family Health Care Decisions Act.
Can a clinician withdraw life support?
They can decide, for example, not to resuscitate a patient or not to offer dialysis if they believe it will cause more harm than good. Clinicians cannot, however, withdraw life support without the consent of a decision-maker.
What is Charlie's condition?
His condition also means he is unable to breathe unaided, which is why he needs to be on a ventilator.
How much money did Charlie Gard's parents raise?
Charlie's parents had raised more than £1.3m to take him to the US for treatment. The plight of Charlie Gard attracted worldwide attention as a result of the legal fight that pitched his desperate parents against the medical profession.
How long is Charlie on the ventilator?
Chris Gard and Connie Yates had applied to the High Court to keep Charlie alive for "a week or so" - longer than originally planned. But a judge ruled that Charlie would be moved to a hospice to spend his final few hours before the ventilator that keeps him alive is switched off.
What is Charlie's treatment called?
Charlie's parents, Connie Yates and Chris Gard, from Bedfont in west London, wanted Charlie to have an experimental treatment called nucleoside bypass therapy (NBT). The treatment is not invasive and can be added to food.
What happened to Charlie's parents?
Charlie's parents disagreed with the hospital and did not want his life support to be withdrawn, so doctors applied to the High Court for judges to decide Charlie's future. In April, the High Court agreed with the GOSH doctors. Charlie's parents then appealed against the decision, but courts ruled the original decision should stand ...
When will Charlie's parents end their legal fight?
24 July - Charlie's parents say they will end their legal fight for his treatment and let him die. 27 July - A judge rules that Charlie will be moved to a hospice to spend his final hours before the ventilator that keeps him alive is switched off.
Did Professor Hirano have a financial interest in Charlie?
The hospital added it was concerned to hear the professor state in the witness box at the High Court hearing on 13 July that he had a financial interest in some of the treatment he proposed prescribing for Charlie. Professor Hirano said in a statement on 25 July he had "relinquished" that financial interest.
What did Charlie's parents say about Charlie's death?
"Charlie's parents have tirelessly advocated for what they sincerely believed was right for their son, and nobody could fault them for doing so," Great Ormond Street hospital said in its statement. "The priority of our medical staff has always been Charlie. ... Every single one of us wishes that there could have been a less tragic outcome."
Why did Charlie's parents want to take him home?
Charlie's parents wanted to take him home to die. If they couldn't take him home, they wanted to keep him alive on a respirator in a hospice facility so they could have several more days together.
Can doctors override parents' wishes?
"British law allows doctors to override the wishes of parents in treatment decisions if it's in the child's best interest," NPR's Joanna Kakissis reported. And that's exactly what happened. The hospital would not allow Charlie to be transferred, and British courts upheld that decision.
Why was Charlie sent to Gosh?
In October 2016, Charlie was transferred to London's Great Ormond Street Hospital (GOSH), a National Health Service (NHS) children's hospital, because he was failing to thrive and his breathing was shallow.
Why did Charlie's parents want to move him to private care?
Charlie's parents wanted to move him to private care and wanted to wait a "week or so" before they ended mechanical ventilation. The hospital objected on the basis that he needed intensive care and that mechanical ventilation should be ended soon. The case returned to the judge on 25 and 26 July.
How many doctors were in the Gosh trial?
The court heard testimony from two doctors and two nurses from GOSH, four doctors from whom GOSH had sought second opinions, from a doctor appointed as expert witness by the parents with the court's permission, and from Hirano by telephone from the US.
What did Gosh discuss with Charlie's parents?
GOSH began discussing with the parents the ending of life support and the provision of palliative care. By this time, relations between the parents and the doctors had deteriorated. One GOSH doctor emailed another: "Parents are spanner in the works. Recent deterioration with worsening seizures means trial is not in his best interests." The email emerged in the subsequent court case; the judge said that he understood the distress it had caused the parents, but that it was important to view the email in the context of notes passed between consultants about Charlie's best interests. The parents disagreed with the doctors at GOSH; they wanted to take him to New York to receive the nucleoside treatment.
What did medical experts say about Hirano?
Medical experts criticised interventions by Hirano and others for raising the parents’ hopes and for causing delays to the process. Genetics expert Robert Winston said "interferences from the Vatican and from Donald Trump" were "extremely unhelpful and very cruel". Winston added: "This child has been dealt with at a hospital which has huge expertise in mitochondrial disease and is being offered a break in a hospital that has never published anything on this disease, as far as I'm aware." Some commentators in the United States argued that Charlie's plight was the result of the UK having a state-run national health service and that the decision to withdraw Charlie's life support was driven by cost. The High Court judge described these comments as "nonsensical", adding that "it was one of the pitfalls of social media that the watching world felt it right to have opinions without knowing the facts of the case". The chairman of GOSH made a statement condemning "thousands of abusive messages", including death threats received by staff at the hospital and harassment of other families in the hospital over the preceding weeks. GOSH asked the Metropolitan Police Service to investigate the abuse. The parents issued a statement condemning harassment of GOSH staff and said they had also received abusive messages. GOSH released a statement criticising Hirano for offering testimony without having physically examined Charlie and without review of the medical records; they also said Hirano had disclosed that he had a financial interest in the treatment very late in the process. Hirano made a statement in response saying that he had relinquished his financial rights in the treatment.
What is the likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy?
the likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy to be markedly improved compared to the views expressed in court; the likelihood that the proposed nucleoside therapy will cross the blood brain barrier to be significantly enhanced.
When was Charlie scheduled for a tracheostomy?
A committee meeting was scheduled for 13 January, and Charlie was provisionally scheduled for a tracheostomy on 16 January. GOSH invited Hirano to examine him in January, but he did not examine Charlie until July.
International Transfer and Futility Disputes
The possibility of transferring a patient to another health care institution has long been seen as a potential solution to intractable disagreement between professionals and families. 20 In the North American context, this has sometimes been enshrined in law.
Obstructing Transfer
Why should health professionals seek to impede transfer if there are health professionals willing to provide treatment? I will outline 3 ethical arguments in defense of this approach in select cases.
In Favor of Transfer
However, even if it is accepted that parents’ refusal of treatment may sometimes be overruled, one distinguishing feature of the Gard case (and several others that have reached the courts in the United Kingdom) is that parents had qualified health professionals who were prepared to provide the treatment.
Conclusions: Preventing Harm
It is justified for health systems to obstruct transfer of children for treatment that is believed would cause harm to the child. Of course, that then leads back to the contested question of whether the treatment requested by parents would be harmful.
Competing Interests
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
The Case of Charlie Gard
‘Unlikely’ Situation For The United States
- Although a Charlie Gard case could happen in the United States, “it seems unlikely,” said Dr. John D. Lantos, director of Bioethics Center at Children’s Mercy Kansas City. Similar cases in the US, such as Jahi McMath’s, tend to be resolved in favor of parental rights, he explained. Jahi, a 13-year old-girl, entered Children’s Hospital Oakland in California in 2013 for a routine tonsillectomy…
Discretion Or Rights?
- Seema Shah, a lawyer and ethicist who is a faculty member at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute, explained that US courts consider “parental discretion,” not parental responsibility. American parents have “discretion to make decisions” on behalf of their children, Shah said, “up to the point where their decisions are going …
‘A One in A Zillion Chance?’
- “Therapeutic misperception” is at play in the Charlie Gard case, said Dr. Jeffrey P. Brosco, a professor of clinical pediatrics at the University of Miami Miller School of Medicine. He’s seen this in other bioethical cases and believes cases that closely resemble Charlie’s happen stateside all the time. “Therapeutic misperception is the idea that if there’s something that could work, then i…
‘Even in Texas’
- In the 1990s, Baylor University bioethicist Rick Brody began to notice “some very disturbing cases,” said Amy McGuire, director of the Center for Medical Ethics and Health Policy at the Baylor College of Medicine. The cases involved dying patients, where nothing medical could be done to improve their condition, McGuire explained. In each of these cases, a family member was reque…