How Charlie Gard Could Happen In The US

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Joshua Gill Religion Reporter
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In the wake of Charlie Gard’s death, the question arises of whether the U.S. health care system could force someone to die despite a chance of improvement — the answer is yes.

Significant differences exist between the structures of the U.K. and U.S. health care systems and the laws presiding over each. Charlie Gard’s case could not have developed in the exact same way in the U.S., but U.S. medical insurance companies’ support of  assisted suicide and legal definitions of medical futility have achieved the same result.

Rights Of The Parents Vs. Rights Of The Child

Chris Gard and Connie Yates fought for five months to save their son, but the Great Ormond Street Hospital, the U.K. High Court, and even the European Court of Human Rights ruled against them. According to the U.K. legal system, Gard’s parents’ appeal to seek treatment for their son was not an appeal made on Gard’s behalf, but an appeal made against Gard’s rights as represented by the state.

Parents in the U.K. do not define the best interests of their children. The state does. Throughout Gard’s legal battle, Victoria Butler-Cole acted as Gard’s court-appointed legal guardian, represented Gard’s rights, and argued that it was in Gard’s best interest to “die with dignity.”

How could the U.K. depict Gard’s case as parents pitted against their own child? The answer lies in article 3 of Convention on the Rights of the Child:

  1. In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.
  2. States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.
  3. States Parties shall ensure that the institutions, services and facilities responsible for the care or protection of children shall conform with the standards established by competent authorities, particularly in the areas of safety, health, in the number and suitability of their staff, as well as competent supervision.

The state defines the best interests of a child under this convention, and in Gard’s case, the U.K. legal system said it was in his best interest to die, despite a chance of improvement.

The U.K. is one of 191 countries to sign this convention, which according to articles 43 through 54, is overseen by and answerable to the UN. The U.S. did not sign this treaty, meaning that the American legal and medical systems are not regulated by the UN and not subject to the rules laid out in the convention.

Even so, the U.S. had its own Charlie Gard case in the form of a girl named Aden Hailu.

Aden Hailu, The American Charlie Gard

Aiden Hailu was a 20-year-old resident of Nevada who never woke from an appendectomy performed April 1, 2015. Hailu’s family fought to have her treated, but the hospital sued the family and demanded that Hailu be removed from life-support and allowed to die, according to Dr. Brian Callister.

“Now, she wasn’t brain dead,” Callister told The Daily Caller News Foundation. “She had full brain waves on her EEG, but she met the Nevada state statute at the time for brain dead because you only had to meet two out of three criteria. She didn’t have normal reflexes and she didn’t breathe on her own when they turned off the breathing machine. Now, that doesn’t mean she couldn’t still get better. Now, her chances were remote. They were very very low, but the hospital and the other physicians said it was essentially zero.”

Callister was the only doctor to testify on the family’s behalf. A lower court found in favor of the hospital, but the Nevada State Supreme Court found in favor of the family. Hailu, similar to Gard, died during the course of the legal battle for her life.

Futility Vs. Hope

The crux of Hailu’s case was a debate over the definitions of futility and a reasonable hope for improvement — the same debate between Gard’s hospital and Gard’s parents, according to Callister.

“No one, no physician has an obligation to treat a patient that’s beyond hope,” Callister told TheDCNF. “That’s where we get into the concept of futility. But how you define futility versus reasonable hope in any given case is a murky murky gray area. Like I said, one doctor could say ‘this is futile’ another doctor could say ‘this gives hope.'”

Cases where a patient is denied access to treatment that could save their life, as in the case of Charlie Gard, can and do happen in the U.S. at the hands of the debate between futility and reasonable hope, according to Callister.

“I’ll tell you where that’ll happen here,”  Callister told TheDCNF. “Here’s how it’ll happen. So the Aden Hailu case is one to look at. That’s a particular hospital. … The way this’ll go down, it’ll get into the argument, just like Charlie Gard, of ‘what is reasonable hope to recover.’ And that can get into some real splitting hair dynamics.” 

“The problem for people like us, for the average person who wants reasonable care when they have a reasonable hope of recovery, or even some hope of recovery to get back to a quality of life — they need to be able to count on people not to use that disagreement or that splitting of hairs against them. In other words, to call something futile when it’s really not futile at all, but it’s standard of care. And that’s where I think we see egregious denials, and we do see that sometimes already,” Callister added. 

Follow the Money

Medical insurance companies denied life-saving treatment to two of Callister’s former patients and recommended assisted suicide instead. Callister could not identify the insurance companies or the patients, due to HIPAA law.

“I was in Nevada, but the patients were from Oregon and California,” Callister told TheDCNF. “I had requested life-saving procedures and a transfer because Reno-Tahoe is a destination site. So, I was looking to move one patient hospital-to-hospital from California. About a month later, one patient hospital-to hospital-to Oregon. And in both cases the insurance medical director on the phone to me said ‘you know, we’re not going to pay for the transfer and that procedure. Hey, by the way, have you talked to them about assisted suicide?'”

The co-pay for assisted suicide pills was $1.20.

“I think you already see this kind of thing happening, not just with children, but just with denials of procedures and treatments already. Insurance companies are always going to do the cheapest thing, and it happens all the time,” Callister added. 

Stephanie Packer of California and Barbara Wagner of Oregon, for example, were also denied coverage for expensive treatment by their medical insurance and instead offered the cheaper option of assisted suicide medication.

Money played a key role in Hailu’s case as well. Nevada malpractice law caps non-economic damages at $350,000. Non-economic damages are subjective damages that are not concretely calculable, like stress, loss of enjoyment of life, scarring, and disfigurement. In the event of Hailu’s death, Hailu’s family could only receive a maximum of $350,000 from the hospital.

Economic damages, such as treatment required due to medical malpractice, are not capped. If Hailu lived and required life-support and other treatment for decades, the cost could amount to tens of millions of dollars for the hospital.

While money factors into the insurance companies decisions, it was politics, not expense, that caused the U.K. courts to back the Great Ormond Street Hospital (GOSH), according to Callister. Gard’s parents raised all the necessary funds for Gard’s transport and treatment.

Callister told TheDCNF that it would have been “catastrophic” for the National Health Service (NHS) — the U.K.’s public health system — if they had decided not to support the the decision of GOSH’s doctors because of an already contentious employee-employer relationship between physicians and the NHS.

“That’s a horrible reason to do what they did, and it’s not all of it I’m sure, but it’s certainly a part of it,” Callister told TheDCNF. “With all the fall out they’ve had with the strikes and the junior doctors over their, all of that … almost from an employer-union perspective, the union being the National Health Service doctors, I think the National Health Service was in a no-win situation. They had to back up their docs, almost no matter what they said”

Medical Rationing In The U.S.

While expense plays different roles in the U.K. and U.S. medical systems, both medical systems engage in a practice called “rationing” in which access to certain medical treatments are intentionally limited. The difference is that the U.K. explicitly rations, while U.S. rationing is implicit.

“I teach my medical residents and medical students, every rotation I’ve taught about this, I say Canada and the U.K. have what I’ll call explicit rationing,” Callister told TheDCNF. “Things like the day you turn 70, you don’t get heart bypass anymore. That’s very explicit. You know ‘you can’t have that anymore.’ That’s explicit rationing. So the U.S., we have lots of rationing already. It’s just implicit rationing. We’re sneaky about it. The insurance company says ‘no, we won’t cover that.’ That’s implicit rationing. We already have rationing.”

Should the U.S. ever become a single-payer healthcare system, like the U.K., the government will have the power to explicitly ration.

Currently, a case like Charlie Gard can happen in the U.S. when a doctor, in accordance with state law, declares treating a patient to be futile. Even in such a case, a patient may seek treatment elsewhere. Insurance companies can also create cases analogous to Gard’s by denying coverage of life-saving treatment while offering coverage of assisted suicide.

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