I have been following this story in the news but have not written about it at length. I want to pretend with my whole heart that it isn’t happening, because it troubles me so deeply.
It’s this story. About the boy with cancer who doesn’t want to take cancer drugs.
He’s back home now, after his flight from chemo being chronicled in the news media for weeks. And I, the libertarian who is sentenced with taking low-dose chemo every week from now until the end of her natural life, have an understanding of the story that not everyone else gets. I should be writing about it, but I can’t because of the blind rage that overtakes me.
We’ll try, though. Because I have to address it.
First off, we all know the boy has a type of lymphoma. And that bothers me. We shouldn’t know that. Medical records are supposed to be private–between a doctor and a patient. I’m not sure who first let out what this boy had–maybe his parents, maybe his doctors. Regardless, that’s not our business. And yet we all know it because it’s on the news. I certainly hope none of my medical issues and treatment becomes newsworthy. Because apparently we now have this “doctor patient confidentiality–unless it’s a really good story” rule in the United States.
Even more awful is the other problem. The idea that people who aren’t the boy or the boy’s parents are trying to make medical decisions for the boy and his parents. Chemo does save lives. But I’m taking it. I’m taking it at low doses. Those low doses–for treatment of autoimmune disease instead of cancer–are bad enough to make me often think that it’s just easier to be sick. I can completely understand someone electing to die rather than live the hellish quarterlife these drugs give you.
I should carefully disclaim that I know people who are undergoing full-blown chemo for full-blown cancer who don’t seem to mind it that much. Not everyone reacts the same way. But you never know–until you’ve shot the caustic acid into your body–whether you’ll be one of the folks who sleeps for a day afterward bathed in sweat. You’ll never know if you’re one of the people who is so nauseated you can’t eat for 72 hours after dosing. You’ll never know if you’ll watch your hair come out in fistfuls in the shower. You’ll never know if your mouth will fill with tiny white blisters that make eating anything salty or acidic impossible. You just don’t know.
In some ways people who have cancer have a clearer-cut decision when it comes to chemotherapy. Do it and live. Don’t do it and die. It’s a plain choice. It should be the patient’s choice. Not the media’s or the courts’ or the doctors’. Granted, choosing to die seems like not much of a choice to many people. But once you’re diagnosed with cancer, death is always a concrete option. It is no longer an abstract ‘someday’, but a certainty. Unless you’ve been there–and I haven’t personally–you don’t know and can’t say.
If this boy elects his own death I say that’s his business. And I say we leave it to him.
Just Another Pretty Farce 
I completely agree with everything you said. Except one thing–not everyone who takes the chemo survives cancer. For some, it just puts off death a little while; for others, it alleviates their cancers. No one knows that effect, either.
I’m not sure I’d ever elect to do it myself. My mother’s longtime employer, a doctor was diagnosed with pancreatic cancer and decided not to do the chemo. He was 70 and just decided to wait it out. He lived for about two years and may not have lasted that long (and probably not longer) if he’d taken the treatment. Dealing with cancer is a crapshoot. If this boy doesn’t want to gamble on chemo that may make him miserable, he shouldn’t have to. No one can prove that it’s good for him.
Is a 13-year-old competent to decide to die? More to the point, is he competent to decide that fake Native American woo-woo stuff can cure him, which seems to be the argument being made?
His parents agree with him. The doctors are the ones complaining from what I can tell.
Are he and his parents competent? I don’t feel comfortable in a place of secondguessing parents. If I did that half the kids I know would be rehomed. It’s just easier to stay out of it.
I think we don’t allow Jehovah’s Witnesses to refuse transfusions for their children. I don’t know where, between that and allowing them to refuse a 90% successful treatment for an otherwise guaranteed fatal disease, we draw the line of permissible parental control. But I know that I’d feel a lot more comfortable if the parents were saying that they respected their child’s right to decide to die rather than saying that they prefer this alternative treatment because they think it will heal him.
If this boy elects his own death I say that’s his business. And I say we leave it to him.
I agree with you in principal except this is a 13-year-old boy, not an adult. Legally, he’s not allowed to make his own decisions. He’s not allowed to vote, or drive a car, or enlist in military service. He’s a minor. If he were to commit a crime he’d be treated as a juvenile, differently from an adult.
And so in the eyes of the law, he’s not considered capable of electing his own death. He is his parents’ responsibility. The question is, can the law force a parent to give their child medical treatment? In the past the answer has been yes.
This is not the first time this issue has come before the courts.
Nope, he’s not old enough to elect his own death. He wouldn’t even be old enough to elect which parent he wanted to reside with in a custody case. So, the “he should be permitted to choose” is a legal non-starter. He’s a dependent ward.
When an individual’s religious belief, imposed upon a dependent ward, has abusive or in this case murderous effects, the state the standing to intervene.
Religious liberty ends when its exercise has the effect of injuring or killing other people. Parents can’t starve a child to death because they think God has told them to do so, they can’t beat him to death to get the demons out, and they can’t refuse reasonable and demonstrably effective medical treatments because they believe in some wack homegrown shamanistic BS.
Fortunately, it’s a moot question now.
We went down the chemo road last year with our 20 year old daughter who had Hodgkins disease. I thought it was going to be incredibly hard…but it was much worse than I expected. When your kid throws up just from walking into the doctors office and then looks at you with tears in her eyes and begs and pleads with you not to make her go through another round of chemo, it’s awfully hard to keep doing it. I fully sympathize with the temptation to get in the car and just drive away…but you just can’t do that.
She got violently sick for the first seven of her twelve treatments, till they finally gave her an effective anti-nausea medicine. It was $370 for 3 pills ($60 with insurance thankfully!)…and worth every penny. After spending a week in the hospital with pneumonia, she finished her treatment last November, and is doing great now. I do feel for those parents, even though I think they were on the verge of making a horrible mistake. There needs to be a lot better help for both patients and families when it comes to dealing with cancer and chemo.
But I know that I’d feel a lot more comfortable if the parents were saying that they respected their child’s right to decide to die rather than saying that they prefer this alternative treatment because they think it will heal him.