Who Makes Medical Decisions for You (or your kids)?

I have a bit of a libertarian left leaning streak when it comes to private decisions around your life, health, sexuality and so on. Basically if you're not bothering anyone I think the government should leave you alone. That's true whether you're a black New Yorker walking down the street or a white twenty-five year old who doesn't see a need to purchase health insurance. And I feel even more strongly about someone coming between a parent and a child. However intellectual honesty compels admission that there are some cases where government not only has the right but the duty to interfere with your decision making and/or that which impacts your children. We don't look kindly on heroin addicts. We look even less kindly on heroin addicts who share their drugs with their children. I don't care if someone wants to be a sex worker. If that person wants to recruit their underage child into their line of work then they should be as Bo Diddley sang, placed "so far back in the jail that they'll have to pump air in". You can't open a factory and dump lead in the water. And so on.

Those are obvious calls though. Medical care decisions are more complex.
Doctors and scientists have knowledge and information that the rest of us lack. There's nothing magical about that. It's their line of work. A doctor would likely look just as out of place in your line of work if you're not a doctor. If a doctor suggests an action plan for a particular disease you're probably going to listen to him/her..again assuming you're not a doctor yourself with the same or greater knowledge as the bozo who barely made it through medical school and has his papers routinely rejected by scientific journals.

BUT

The doctor does not own you. You can ignore the doctor's advice and continue doing everything the doctor told you not to do. None know the hour or day of our death. Ignoring the doctor's advice is probably a bad idea (lung cancer patient continuing his three pack a day habit, diabetes or gout sufferer continuing to eat second/third helpings at dinner and TONS of sugary desserts), but again, there are people who do just that and against all odds live longer and healthier than they should. There are some diseases for which the cure is almost as bad as if not worse than the disease. If the doctor tells us that we need to have a limb amputated, have our reproductive systems removed, have our digestive systems altered so that we have to use a colostomy bag or have chemotherapy, some of us might decide that we'd rather live with the disease instead of taking the cure. At least we might want to consider options. So we'd tell the doctor no thanks and keep it moving.

But what if the doctor smiled nastily and said, "No dummy I don't think you understood. That wasn't a request.You're getting the treatment whether you like it or not!"

An appeals court has sided with a hospital that wants to force a 10-year-old Amish girl to resume chemotherapy after her parents decided to stop the treatments. The court ruled that a county judge must reconsider his decision that blocked Akron Children's Hospital's attempt to give an attorney who's also a registered nurse limited guardianship over Sarah Hershberger and the power to make medical decisions for her. The hospital believes Sarah's leukemia is very treatable but says she will die without chemotherapy.

The judge in Medina County in northeast Ohio had ruled in July that Sarah's parents had the right to make medical decisions for her. The appeals court ruling issued Tuesday said the judge failed to consider whether appointing a guardian would be in the girl's best interest. It also disagreed with the judge's decision that said he could only transfer guardianship if the parents were found unfit. The family's attorney, John Oberholtzer, said Wednesday that the ruling essentially ordered the judge to disregard the rights of the parents. Andy Hershberger, the girl's father, said the family agreed to begin two years of treatments for Sarah last spring but stopped a second round of chemotherapy in June because it was making her extremely sick.

"It put her down for two days. She was not like her normal self," he said. "We just thought we cannot do this to her." 

Sarah begged her parents to stop the chemotherapy and they agreed after a great deal of prayer, Hershberger said. The family, members of an insular Amish community, shuns many facets of modern life and is deeply religious...

LINK
I'm usually going to follow my doctor's orders. But there have been people quite close to me who have died from cancer. And it's my firm unyielding belief that the treatments killed them just as much as the disease did. If I ever got a cancer diagnosis I would think long and hard about my treatment plan. I've also known loved ones who, despite being repeatedly told that their diet and lifestyle would literally kill them, stubbornly refused to make changes and promptly died, just as the doctors told them they would.

For me the fundamental question is who decides on the course of treatment, the doctor or the patient? I believe that freedom requires that the patient decides. 

And if the patient is too young to decide her fate, then her parents get the last word. If the parents happen to be moronic that's unbelievably unfortunate, but as most parents are not moronic I don't want the government stepping in to override medical decisions unless the decision is obviously insane and the person will die immediately. For example, some devout fundamentalists of various religions do not believe that a woman should be viewed (naked, without her hair/face covered, at all) by any man except her husband. Let's say there was a car accident and a badly injured woman was trapped in a burning car. The only way to save her requires cutting through her outer garments. She will temporarily be only partially clothed. Her husband (sitting safely on the curb) objects on religious grounds. Clearly emergency personnel should ignore him and rescue the woman before she's burned to death. If that same woman goes to the doctor, is told she needs a hysterectomy and declines it on religious or personal grounds, I don't want the government overriding her choice and sending her to the surgeons. 

But those are adults. What about kids? Isn't that different? Doesn't the government have a role to play?

Parents, not the government, are the primary and best caretakers. They have responsibility for their child's medical care. Obviously they will need help on occasion. There are many decisions that parents make regarding their children. This includes everything from when, if or how to tell them the facts of life, to their diet, to what sort of social activities they engage in, to which books they can read, to when or whether to take them off life support after they've been in a coma. It's truly an awesome responsibility. So absent some immediate certainty of death, provable neglect or irrationality, I think the parents should have final say. Choosing not to undergo chemotherapy is not to my mind the same thing as drilling a hole in your child's head in order to let the demons out. It's not an easy call to watch a parent make what I think is a bad decision but I think it's the right one. Of course I could be full of it. It wouldn't be the first time. 

What do you think is the right decision here?

Who should have the final word? The state and/or hospital or the parents?