Politicians Playing Doctor

Recently the British baby Charlie Gard has been in the news. Unfortunately he was born with a rare disorder called Infantile Onset Encephalomyopathic Mitochondrial DNA Depletion Syndrome. The parents of the 11-month-old boy have been in a court battle with the London Hospital caring for him since October. The hospital obtained a court order to remove the boy from life support as the doctors treating him said his condition was terminal and that treatment would just cause the boy additional distress.

The parents have held up hope for an experimental treatment with nucleosides a U.S. doctor has offered, even though he had not examined the patient. In fact no person or animal with Charlie’s condition had ever received the treatment. Reportedly 9 patients with a related disease had some improvement with the treatment.

President Trump weighed in:

Recently Republican House Congressmen Brad Wenstrup (Ohio) and Trent Franks (Arizona) said they would introduce a bill to give Charlie permanent residency in the United States so he can travel for the experimental therapy.

I sympathize with the parents. It’s awful to see your children with serious illness. However sometimes stopping care really is the best thing to do. The US doctor reportedly said a 10% improvement in strength was possible. But that’s the same as saying you can go from lifting 10 lbs to being able to lift 11 lbs. It’s just not going to make a significant difference.

I also believe in research studies. In fact close to 20 years ago I had a patient with a different neurological disorder who could not be removed from a ventilator. I received FDA approval to administer an experimental treatment. It may have helped – they did get off the ventilator, but they died not that much later. That drug had preliminary treatments in animals, then in humans.

If our politicians were really that concerned about the health of an infant in another country, maybe they would accept refugees from countries such as Syria, where innocent people have been in terrible conditions. Their chances of improvement would practically be guaranteed. Unfortunately for Charlie, that’s just not realistic.

Tort Reform and the Sanctity of the Jury

I serve on WAMPAC, a political action committee for the Washington State Medical Association (WSMA). To help guide our members, last month we met with candidates for Washington State governor Rob McKenna and Jay Inslee.  They were both generous with their time and answered our questions.

As physicians, one of our issues is tort reform. We are concerned that large and unreasonable malpractice awards increase the cost of medical care and cause physicians to order unnecessary tests as ‘defensive medicine’. Attorney General Rob McKenna said he was supportive of tort reform, though didn’t give much specifics. Congressman Jay Inslee said he did not believe in malpractice caps because, he said, unlike others, juries are untainted and therefore we need to respect their decisions. That prompted me to send him the following letter. One month later, he has yet to respond. I wonder how I’ll vote in the primary?

Dear Mr. Inslee,

I enjoyed meeting you, and appreciate your spending time to talk with the Washington State Medical Association WAMPAC Committee 7/3/12 regarding your candidacy for governor.

On the issue of tort reform, you mentioned that you didn’t support malpractice caps because you believed in juries making the decision, as they are untainted by lobbyists or others.

Speaking for myself, I have some concerns about this. Short of Plato’s philosopher kings, juries may be the best choice to decide cases, but they are hardly perfect. There are numerous well documented cases of people sentenced to death, yet later found innocent by DNA evidence. In malpractice cases, I would argue that juries are far from perfect. How else could you explain the differences in the chances of being sued and the size of the award based on specialty (http://www.nejm.org/doi/full/10.1056/NEJMsa1012370)? The average neurosurgeon is sued once every 5 ½ years. You would be hard pressed to find a retired neurosurgeon who has never been sued.

Even if juries make perfectly logical decisions, it’s only as good as the cases presented to them, which may be flawed.

In cases where juries decide the outcome, there are restraints. There are judicial guidelines, and juries cannot impose the death penalty for shoplifting, for example, even if they wanted to. Putting financial caps on malpractice cases would be no different. The jury could still decide if the defendant is guilty, but guidelines would cap the size of the reward.

I hope you will reconsider your view on tort reform.

Sincerely,

Daniel Ginsberg, MD, FACP