Charlie Gard’s Mom Shouts “What If It Was Your Child” After Judge Says Charlie Will Die in Hospice
Charlie Gard’s mother Connie Yates today left a courtroom in tears after the judge in the case said Charlie would have to die in a hospice if his parents and the London Hospital that has been refusing to treat him properly can’t come to an agreement over where he will be when his life support is removed.
Charlie’s parents have been fighting with the hospital over whether or not they can take him home so he can be surrounded by friends and family after he is removed from life support. However the hospital has refused to allow him to go home — saying that it doesn’t think his ventilator would be able to fit through the front door of his house.
Charlie’s say they have found a doctor willing to look after the 11-month old boy so they can spend time with him at home away from the hospital during his final days but Judge Francis says Charlie will die in a hospice unless both sides can agree.
That prompted an emotional response from Yates.
CHARLIE Gard’s mum has today fled the court in tears as a judge confirmed the tot will die in a hospice unless a deal is struck with Great Ormond Street by midday tomorrow.
Connie Yates – who is at the High Court alone – began crying and shouting “what if it was your child?” before leaving the hearing this afternoon.
A High Court judge was set to announce his decision on where Charlie will end his life after his parents and hospital lawyers took on a new legal fight – if the hospital and parents could not reach an agreement.
Fiona Paterson, a lawyer representing GOSH said the situation could not carry on and said “this cannot drag on into another day”.
After Mr Armstrong asked for 48 more hours to find an intensivist [board-certified physician who provides special care for critically ill patients] who can take care of Charlie, the judge said the indecision between the two groups is “compounding” the parents’ misery.
He said he was hoping for an agreement to be reached today and said: “I have gone out of my way to accommodate the parents’ wishes.”
He said he might give the parents until 12pm tomorrow to try to reach an agreement, but said there must be a “default position” if they cannot agree.
On Monday, Connie Yates and Chris Gard decided to end the legal battle to get their son experimental treatment. Based on new evidence, the couple said Charlie’s condition has deteriorated too much and there no longer is any hope of the treatment working.
Their final request to a judge this week was to be allowed to take Charlie home to die. The 11-month-old British infant has a rare mitochondrial disease and brain damage. His parents and Great Ormond Street Hospital have been in a months-long legal battle over his treatment.
“We promised Charlie every day we would take him home. It seems really upsetting, after everything we’ve been through, to deny us this,” his mother said.
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London High Court judge Justice Francis is expected to rule on the request today, according to the Daily Mail.
The hospital opposes the parents’ request. Its lawyers argued that Charlie needs to stay at the hospital or go to a hospice facility until he dies. Doctors claimed his ventilator will not fit through the door of his parents’ home, and he could suffer a painful death.
The 11-month-old British infant has a rare mitochondrial disease. His parents and Great Ormond Street Hospital have been in a months-long legal battle over his treatment.
His mother told Good Morning Britain previously that she does not want her son to suffer. She said it has been “absolute living hell” to wait and wonder when the hospital might end his life support.
“He’s our own flesh and blood and we don’t even have a say in his life whatsoever,” Yates said. “We are not bad parents, we are there for him all the time, we are completely devoted to him and he’s not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.”
Questions remain about whether Charlie could have benefited from the experimental treatment, had it not been delayed for months during the legal battle between Charlie’s parents and the hospital. The court battle began in March.
In the Royal Court of Justice in London, Connie stated, “Charlie was left to lie [in Great Ormond Street Hospital] and deteriorate. We wanted Charlie to have the chance … [there] was never false hope, as confirmed by many experts. Now we’ll never know…” Connie and Chris underscored that they “should have been trusted as parents.”
Despite all of his problems, Charlie’s parents – and millions like them – believe that Charlie is a valuable, living human being who should be given a chance to live.
Leading pro-life advocates helped Charlie’s parents fight for his life.
Charlie’s parents brought Terri Schiavo’s brother Bobby Schindler to London to help them fight for care for their son. Schindler spoke with LifeNews exclusively about their invitation.
Schindler told LifeNews: “We are here by invitation from the family to come alongside them as they struggle to save their son, Charlie. The critical issue here is not a political one, but the simple notion that families know what is best for their loved ones.”
“Charlie’s situation is very reminiscent of my family’s battle to save my sister, Terri. Hopefully being here can help his parents, Connie and Charlie, deal with the day-to-day emotional roller coaster, as they fight for their son’s right to live,” Schindler added.
Parental and Governmental Authority in Medical Decisions: The Tragic Case of Charlie Gard
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By preventing Charlie Gard from receiving further medical treatment, the United Kingdom is exceeding its legitimate authority, and violating the right of Connie Yates and Chris Gard to make an intimate and important family decision about how best to care for their sick child.
Much ink has been spilled debating whether or not further experimental treatment would be in the best interests of Charlie Gard. That debate is important and worthwhile. But it is not, in fact, the central question at issue in this case. Rather, the central question is: Who has the authority to make this controversial medical decision on Charlie’s behalf? The doctors at Ormond Street Hospital? The British courts? Or Charlie’s parents?
All three parties have some legitimate stake in the case. Like all medical professionals, Charlie’s doctors have the right to refuse to provide medical treatment to which they have a conscientious objection. Therefore, if they believe that further treatment for Charlie’s rare mitochondrial disorder would be unethical because his condition has deteriorated to the point at which it would only prolong Charlie’s suffering, they should not be forced to provide it. Yet in this case the British doctors are not only refusing to provide the requested treatment themselves; they also are seeking to prevent Charlie from receiving treatment from other doctors willing to provide it. They had no real right, therefore—at least from an ethical rather than legal perspective—to take the issue to court in the first place.
The state is charged with promoting the public good, which includes a responsibility to protect children from abuse and neglect. Yet giving further treatment to Charlie Gard presents no direct threat to the public good—not even economically, since the parents have raised the funds to pay for the treatment. Further, there is no question here of abuse or neglect. Indeed, the High Court went out of its way to praise Charlie’s parents, Connie Yates and Chris Gard, for their exceptional commitment and devotion to their son.
That leaves us with the parents. For the British doctors, Charlie is one among hundreds of patients—obviously a very special patient due to the rarity of the case and the public attention it has received, but nonetheless still one among many. For the United Kingdom, Charlie is just one of the millions of children within its realm. But for Connie and Chris, Charlie is a beloved son, with whom they have a unique, permanent, and irreplaceable bond. Connie and Chris gave Charlie his life and his identity. They are the ones who brought Charlie into the world, the ones to whom he is most intimately connected, and the ones most deeply invested in Charlie’s well-being. They are, therefore, the ones most directly responsible for Charlie’s care, and the ones with primary authority to make decisions on Charlie’s behalf.
That the family (recognized as a natural pre-political community by great figures ranging from Aristotle and Locke to Gandhi and Confucius) possesses the right to a certain autonomy over its internal affairs is widely accepted not only as a matter of moral principle (as I have argued in previous articles and in a book), but also in national and international law. This right has been affirmed by the United States Supreme Court in cases like Meyer v. Nebraska, Pierce v. Society of Sisters, and Wisconsin v. Yoder. These cases all affirm the right of parents to direct the education and upbringing of their children as a fundamental aspect of a free society. This same basic principle applies to medical decision-making as well.
Similarly, Article 8 of the European Convention of Human Rights and Article 12 of the Universal Declaration Human Rights mark out the family as a private sphere that is relatively autonomous from coercive state interference, to the extent that that is compatible with the rights of others and the maintenance of a democratic society. The Universal Declaration further states that the family is “the natural and fundamental group unit of society” (Article 16) and that “parents have a prior right to choose the kind of education that shall be given to their children” (Article 26), again pointing to a broader principle of parental decision-making authority.
By using its coercive power to prevent Charlie from receiving further medical treatment, the United Kingdom is clearly overstepping the bounds of its legitimate authority, violating the right of Connie Yates and Chris Gard to make a profoundly intimate and important family decision about how best to care for their sick child.
But what about Charlie? Isn’t it justified for the state to step in order to prevent him from being subjected to additional pain and suffering, all for a slim hope of a slight improvement in his condition? Although no one doubts Charlie’s parents’ good intentions, might not prolonging his suffering on the basis of such faint and limited hope be nonetheless tantamount to abuse?
If it were clear that Charlie was suffering terribly and that further treatment would only exacerbate that suffering, then perhaps the answer would be yes, and state intervention would be justified. Nonetheless, the perhaps needs to be emphasized, especially because even when doctors are completely sure of their prognosis, they can nonetheless be wrong. Just consider the case of Jahi McMath, declared dead on neurological grounds by several expert doctors in California. Jahi’s parents disagreed with the doctors and had Jahi moved to a New Jersey facility that agreed to keep her on life support. Subsequent reportsindicate that, while still extremely sick and disabled, Jahi is now uncontroversially alive and even able to make voluntary movements in response to her mother’s commands.
The case of Charlie Gard is far from crystal clear. The doctors have admitted that they are not sure whether, or to what extent, Charlie is in fact suffering. Nor are they sure whether, or to what extent, the experimental treatment will cause him suffering. Charlie’s mother insists that he is not in pain, adding “I promise everyone I would not sit there and watch my son in pain and suffering, I couldn’t do it.” Further, there is disagreement among medical expertsl about whether or not the experimental treatment will improve his state. The treatment has helped children with other variants of the disease, but the fact is that it has never yet been tried on someone with Charlie’s exact condition.
Given that reasonable and well-informed people who genuinely seek to promote Charlie’s well-being can and do disagree about whether or not pursuing the treatment is in Charlie’s best interests, it is absurd to consider the treatment a form of unintentional abuse. In this case, the courts are simply substituting their own controversial and uncertain judgment for that of the parents. And since there is frequently a fair amount of uncertainty and controversy in medical decision-making, the court’s intrusion in this case sets a precedent for extremely broad state interference with parents’ decisions regarding the medical care of their children. Even further, it sets a precedent for state intrusion in all medical decision-making.
For the right of parents to make medical decisions on behalf of their children is, in a certain respect, an aspect of the more general right of patients to make autonomous decisions about their own care. Imagine that Charlie was an adult suffering from terminal cancer, and that—directly, through a living will, or through a proxy—he indicated his wish to receive any and all possible life-prolonging treatments, even if they were painful, and even if they held out only a tiny hope of benefit. Imagine further that Charlie had the resources to pay for this treatment himself. In such a case, Charlie’s wishes would be followed. Some doctors might refuse to administer a treatment that they considered futile, but no one would take Charlie (or his proxy) to court to prevent him from receiving the treatment from another doctor. And even if someone did bring such a case to court, the judges would certainly rule in Charlie’s favor.
Of course, the real Charlie Gard is a baby and cannot make medical decisions for himself, appoint a proxy, or express his wishes in any way. But this is sometimes the case with adults as well. The documentary Extremis, which is a thought-provoking exploration of end-of-life decision-making, presents the case of a ventilator-dependent middle-aged woman who had suffered a traumatic brain injury. She appeared to be completely unresponsive, and there were no signs that her condition was improving. The woman had not written a will and had never explicitly indicated her wishes for end-of-life treatment. While the doctor believed that continuing life support was futile and recommended withdrawing it, the woman’s daughter, her closest relative and therefore the default health care proxy, felt that withdrawing the ventilator would be tantamount to killing her mother. I believe that the daughter was mistaken on this point; the choice to withdraw a disproportionately burdensome treatment is not a choice to kill someone, but rather a choice to avoid the burdens of the treatment, while accepting as an unintended side effect that the patient may die sooner as a result. Nonetheless, the doctor rightly followed the daughter’s wishes, because the daughter was the one with the authority to make the decision. The patient did unexpectedly have brief periods of consciousness before finally passing away several months later.
Thus, as in the case portrayed in Extremis, in the case of Charlie Gard the wishes of Charlie’s parents, the ones who have primary authority to make decisions on his behalf, should have been followed without further controversy. They should have been allowed to bring Charlie to the US for experimental treatment as soon as they had decided on that course of action. Perhaps the silver lining for Charlie and his parents is that, as a result of the media coverage and widespread public outrage, the US doctors are now offering to send the experimental drugs to the UK so that Charlie can receive the experimental treatment without having to endure transatlantic travel. Whether or not the British government will allow this to happen remains to be seen.
For the rest of us, perhaps the silver lining in this tragic case will be an increased public awareness of the need to be vigilant in defending parental decision-making authority against the encroachments of an overweening state.
Melissa Moschella is an assistant professor of medical ethics at Columbia University. She is the author of To Whom Do Children Belong?: Parental Rights, Civic Education, and Children’s Autonomy (Cambridge University Press, 2016).