Robert Klitzman, director of a masters program in bioethics at Columbia University, says Mike Pence’s comments on Charlie Gard are “alarming” because they seek to “undermine single-payer health systems.”
Pence “politicized a tragic story,” Klitzman said, when the vice president told Rush Limbaugh “the American people ought to reflect on the fact that for all the talk on the left about single payer, that’s where it takes us.”
Gard is the 11-month-old British boy suffering from Mitochondrial DNA Depletion Syndrome, a rare disease that would leave him severely and permanently cognitively disabled. His parents want to take him from a hospital in the UK to the United States for experimental treatments that experts say give him a 10 percent chance of survival.
Health officials in the UK have resisted this, saying his quality of life is unlikely ever to reach an acceptable level, and he should be put out of his misery, have his feeding tubes removed and be allowed to die.
Klitzman, author of a book entitled, “The Ethics Police? The Struggle to Make Human Research Safe,” doesn’t make an ethical argument. He says he thinks Charlie Gard’s parents should have the choice of bringing him to the U.S.
He takes issue with Pence’s linking of this controversy to single-payer. “Gard’s legal battles – and his family’s losses thus far – reflect the goals of the British and European court systems to prevent an infant from needless suffering, and not the costs or systems of care,” Klitzman writes. “Pence is suggesting the British judges are making their decisions because they are rationing health care. That is simply not the case.”
Of course, it is the case.
The British law that governs the National Health Service – the UK’s single-payer system – invests in the courts the responsibility of determining whether care can be withheld. Why else would it do this but to ensure money is not “wasted” on patients who have no hope of recovery?
There is no cost component to this particular decision. Gard’s story went viral weeks ago, and the money for the trip and treatment long since has been raised through crowd funding. But the system cannot make exceptions for Charlie Gard. Its decisions on who has hope of recovery, what constitutes recovery and reasonable hope are invested in courts whose decisions are driven – in part and probably in most – by cost.
Charlie Gard’s parents have long since determined they are willing to spend the time, money and patience to raise a child with diminished mental state. They have friends from all over the world now who would be willing to help. They have determined his life is worthwhile as is.
Carter Snead, director of the Center for Ethics and Culture and professor of law at Notre Dame, explained the problem thusly in a piece for CNN that sought to explain the Pope’s involvement:
“Pope Francis and Charlie’s parents seek to care for and comfort the patient the child now is, despite his perhaps permanently diminished state. Medical interventions that comfort or improve Charlie’s condition are seen as beneficial, even if they cannot restore his brain function to the preferred level.
“By contrast, the UK government and the hospital do not recognize any measure as beneficial that fails to give Charlie their idealized standard of cognitive function. Since they seem convinced that nothing can restore such functioning, the only ‘beneficial’ intervention is to terminate Charlie’s life-sustaining measures and for him to die.”
Klitzman compared the case to Terri Schiavo. In 1990, Schiavo, then in her late 20s, had a heart attack and suffered severe brain damage. Her parents were willing and able to keep her alive, but her husband claimed she had said she did not want to live on a feeding tube. He wanted to marry another woman but could not without resolving her situation.
Then-Gov. Jeb Bush of Florida signed “Terri’s law,” which ordered her feeding tube reinserted, but a court overturned the law. President Bush then signed a bill that transferred jurisdiction of her case to the federal government, but it too was overturned.
Imagine if you were Charlie Gard or Terri Schiavo. You are alive. You are feeling and experiencing things – Schiavo responded to verbal prompts – but you cannot express yourself.
Do you want the people who talk for you to be concerned about the costs or what your quality of life might be? Do you want others – whose charge is to save money – to judge what is comfortable enough for you to make life worthwhile?
Because that’s what single payer offers. It means decisions about life and death come down to costs. And even if private payers step up, once the system is in place, it must evaluate all such decisions on the same basis.
So who should speak on your behalf? Your loved ones who want what’s best for you? Or bean counters from the central office?