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Charlie Gard Dies in Hospice Care

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The parents of 11-month-old British baby Charlie Gard said Friday their terminally ill son has died after being moved to a hospice.

Gard had become the subject of a bitter legal fight between his parents, Connie Yates and Chris Gard, and Great Ormond Street Hospital in London over whether he could be taken to the United States to receive experimental treatment.

Gard’s parents dropped their legal fight after the doctor who had originally offered the treatment said it was too late for it to work.

“Our beautiful little boy has gone, we are so proud of you Charlie,” Yates said in a statement.

Gard was diagnosed with a mitochondrial DNA depletion syndrome, an extremely rare condition that causes a loss of motor skills due to muscle weakness. As the disease progressed, Gard was left with extensive brain damage and no hope of recovery.

The London hospital caring for Gard contended that the baby’s condition had deteriorated beyond the point of treatment, and said he should be removed from life support so he could die with dignity.

British and European courts sided with the hospital, denying Gard’s parents from taking him to the U.S. for treatment.

His parents announced Monday they had dropped their efforts to bring Gard to the U.S. for experimental treatment.

“Poor Charlie. It is too late. The damage has been done. Sadly time has run out,” the lawyer for Gard’s parents said Monday. “Sadly the window of opportunity no longer exists. The parents have taken an extremely hard decision.”

On Tuesday, Gard’s parents asked to bring their son home to die, but that request too was blocked by the hospital, which said the infant’s ventilator would not fit through the door of his parents home.

“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 Tuesday.

Gard’s parents instead asked that their son be sent to a hospice for a few days of “tranquility” before his life support was removed.

Many on social media expressed their condolences over Gard’s passing.

The baby died one week before his first birthday. (For more from the author of “Charlie Gard Dies in Hospice Care” please click HERE)

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Charlie Gard Will Likely Be Forced Into Hospice Tomorrow to Die, Not Allowed to Go Home

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Charlie Gard’s parents have until 12:00 p.m. tomorrow to set up their home to Great Ormond Street Hospital’s (GOSH) liking, or their son will be transferred to a hospice and have his life support pulled there.

Such arrangements will be difficult to make, meaning the 11-month-old who has captured the world’s attention will likely have his life support removed at a hospice.

For months, the hospital argued in court that its staff rather than Charlie’s parents be allowed to decide his fate. After Charlie’s parents, Chris Gard and Connie Yates, eventually ended their legal battle to save their son’s life because the hospital didn’t treat him soon enough, the hospital refused to allow them to take Charlie home to die.

Yesterday and today, Chris and Connie were in court trying to arrange for their 11-month-old son to be transferred from the hospital to their home, and allowed to spend his last moments there.

The BBC reported that Chris and Connie have “accepted their son has to be moved to a hospice” and some British media suggested they gave up trying to bring him home. (Read more from “Charlie Gard Will Likely Be Forced Into Hospice Tomorrow to Die, Not Allowed to Go Home” HERE)

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Parents Admit ‘Time Has Run out’ for Charlie Gard

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The parents of 11-month-old Charlie Gard have admitted defeat.

After the parents battled Britain’s medical and legal establishment for months to bring their infant son to the U.S. for potentially life-saving treatment, a lawyer for Chris Gard and Connie Yates told London’s High Court Monday that they would no longer seek to have the terminally ill infant brought to the U.S. because the treatment can no longer help him.

“It is no longer in Charlie’s best interests to pursue this course of treatment,” attorney Grant Armstrong told Judge Nicholas Francis.

“Poor Charlie. It is too late. The damage has been done. Sadly time has run out,” the lawyer said. “Sadly the window of opportunity no longer exists. The parents have taken an extremely hard decision.”

Charlie has a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and brain damage. He is being kept alive on life support.

Armstrong said that an American neurologist, Dr. Michio Hiranoh, who had come to Britain to examine the infant last week and held out the hope of an experimental therapy, withdrew that offer after seeing a new MRI.

“Charlie has suffered extensive muscular atrophy,” Armstrong said in court. “This is irreversible even with (nucleoside therapy). Chance of improvement can’t now be delivered.”

“The parents’ worst nightmare have been confirmed,” he added.

He said Charlie’s parents agreed that more efforts to save their son would cause him pain. The case was “worthy of a Greek tragedy,” Armstrong said.

“Dark days lie ahead for these parents,” he added. “The parents wish to treasure their remaining time with Charlie, however short that may be.”

Gard and Yates plan to establish a foundation so that Charlie’s voice “continues to be heard,” Armstrong said. (For more from the author of “Parents Admit ‘Time Has Run out’ for Charlie Gard” please click HERE)

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Think a Charlie Gard Situation Can’t Happen in the US? Think Again

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For weeks, the world has been watching in rapt attention the saga of Charlie Gard—the case involving a desperately ill child fighting for survival in the face of U.K. government efforts to block treatment.

Charlie’s parents have been relentless in fighting the government and seeking help abroad.

Their efforts are already bearing fruit. Most recently, a judge has agreed to re-evaluate a previous decision barring the parents from seeking alternative treatment for their son in the United States.

Here at home, opinions differ, but the general reaction is one of outrage that a government official could make a decision about what’s best for a child over the objections of the child’s parents, combined with a sense of relief that this is not the status quo in the United States.

Unfortunately, this is not quite accurate.

Under a little-known regulation referred to as “certificate of need,” a majority of states actually place unelected government officials in the position of deciding what types of medical facilities and treatment options are available in local communities.

While the Charlie Gard case involves other issues as well, government intervention in care is at the heart of the dispute.

And under certificate of need laws, any provider that wants to expand certain types of facilities and medical technology or purchase additional equipment must first ask the state for permission.

The original rationale for these regulations was to prevent providers from competing with one another based on the size or luxuriousness of their facilities, and then passing the cost for those bells and whistles down to their patients.

Lawmakers were also assured by many community hospitals that the institutions would be able to provide more charity care to the uninsured and underinsured because those efforts would be subsidized by wealthier patients who would have no choice but to use the community hospitals.

However, research has shown that states with certificate of need laws actually have more expensive health care and provide a lower quality of medical services.

Additionally, many of the hospitals in certificate of need states do not provide additional charity care as a result of the laws. Instead, the laws end up protecting local monopolies by allowing providers to charge more for less service.

Things have gotten so bad that under successive administrations of both parties, the Federal Trade Commission has sent letters to states urging them to end their certificate of need programs because they are anticompetitive.

Most states have ignored this sound advice, sometimes with devastating consequences.

One heartbreaking example includes the case of a prematurely delivered infant dying while waiting for transport because the hospital where the child was born lacked a neonatal intensive care unit, and doctors needed an incubator to stabilize the newborn.

The twist, however, is that just a few years prior, the hospital’s request to build such a unit was rejected by Virginia on the basis that it was “not in the best health interests of the community”—a chilling precursor of the British Supreme Court decision that denied Charlie treatment because it determined it was “not in his best interests.”

The biggest difference between the high-profile case in the U.K. and certificate of need programs in the United States is that most of us never realize that the government has denied us access to certain health care options.

For lawmakers in certificate of need states tweeting about the ills of the U.K. health care system, now is the time for some serious introspection about how our own state governments are getting in the way of improved patient care.

The lives of their constituents might depend on it. (For more from the author of “Think a Charlie Gard Situation Can’t Happen in the US? Think Again” please click HERE)

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Government Has Assisted-Suicide Supporter Protecting Charlie Gard

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As Charlie Gard’s struggle for life continues, his parents have expressed concern after finding out that the lawyer appointed by the court procedures to protect their son’s interests heads an organization that believes in assisted dying.

According to the Telegraph, Victoria Butler-Cole, who represents Charlie Gard in court, is chairman of an organization called Compassion in Dying. Its sister organization, Dignity in Dying, used to be called the Voluntary Euthanasia Society.

Butler-Cole was appointed to be Charlie’s representative by Cafcass, a state organization in the United Kingdom which is supposed to act in the best interests of children involved in court cases.

A source close to Charlie’s parents, Chris Gard and Connie Yates, told the Telegraph that “The implication is obvious. It looks like a profound conflict of interest.”

Although Compassion in Dying doesn’t directly advocate for assisted suicide, its chairman and board members can only serve as such if they support the aims of its sister organization, Dignity in Dying, which does. (Read more from “Government Has Assisted-Suicide Supporter Protecting Charlie Gard” HERE)

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Charlie Gard’s Parents, Judge Clash in Life-Or-Death Hearing

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There were a few rough edges Thursday in a U.K. courtroom, including one moment when Charlie Gard’s parents, Chris Gard and Connie Yates, stormed out of the hearing at which a judge was examining evidence regarding whether they would be allowed to take their child out of the country for treatment.

But they returned a short time later and the judge eventually asked an American doctor, testifying via long-distance, whether he would be available and willing to come to the U.K. to begin treatments on Charlie.

Charlie’s parents had worked non-stop since Monday to prepare to argue that the judge should allow them to take their child out of the country.

Charlie suffers from a rare genetic mutation of mitochondrial DNA depletion syndrome. He reportedly has brain damage, is blind and deaf, and needs a ventilator to breathe.

Britain’s High Court has ruled that Great Ormond Street Hospital, where Charlie is being treated, should take him off life support and let him die. (Read more from “Charlie Gard’s Parents, Judge Clash in Life-Or-Death Hearing” HERE)

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