Apparently Daniel is back in his home state and has been admitted to the hospital. I have several things to say about this.
1) There are rumblings of “I’m worried about what precedent this will set for parents being able to take care of their children” and “parents should have the right to refuse treatment for their children”.
Parents have generally a lot of leeway in raising their children. However, that stops when the child is at risk. Parents have certain custodial responsibilities to their children, by law. This is to protect children from abuse and neglect and it is, unfortunately, a necessary part of the legal system. Preventing your child from getting a life-saving medical treatment because you don’t believe in it and believe prayer/God or a fraudulent unproven “alternative” treatment will help instead is legally the same as not feeding them because prayer/God etc will meet their needs somehow. It is medical neglect. Parents have a responsibility to care for their children and if they don’t, the law steps in. That’s what child protective services are for. To protect children from their parents.
It would be one thing if Daniel had a disease with a high mortality risk and they had talked it over and come to this decision. But Daniel has a disease with a 95% cure rate. Furthermore, if Daniel did want treatment and his parents did not, he has the right to get the treatment. Would people still be arguing about parents rights if Daniel was begging to be treated and his parents still refused? How come parents rights don’t count then? I thought they had the right to snuff out or provide life for their own children. Thought of from the other direction, one can see how this position becomes untenable. If Daniel did not want treatment and his parents did, there would be a hearing similar to this case to determine whether Daniel was competent to make that decision.
2) “Why not let Daniel make his own decisions? He has the right to refuse treatment.”
Yes, he does. If he understands his choices. Interviews with Daniel demonstrated that he did not, in fact, understand his choices. He was refusing a treatment that would cure him because the extreme discomfort, combined with misinformation from the group his mother belongs to, made him believe it was killing him. He then opted to stop his treatment believing that this would let him live. He was wrong and his tumor grew back.
The difference is between making a choice and making an informed choice. Daniel was not making the choice he thought he was making. There is reason to believe (although I’m not positive) that he has cognitive deficits that prevent him from being able to totally comprehend the consequences of refusing treatment. There is reason to believe that he is being coherced (perhaps not maliciously or intentionally, and perhaps coming from a genuine albeit misinformed concern for his well-being) by the adults around him to refuse treatment. Daniel isn’t saying “let me die”, he is saying “I want to live, but the chemo is killing me” which is false and dangerous.
3) This case is not as cut and dry as people would like to think. While it is true that people have the right to make their own medical decisions and parents have a role in advising their children in making medical decisions (or, depending on age, making the decisions for them), there are several reasons why this case is special. The judge in this case was in an unfortunate position and they made the decision that would have the highest chance of success for Daniel, not his parents, as it is his life that’s on the line.
A. Daniel’s mother initially agreed to treatment and only refused after Daniel refused after he became ill from the chemo (a known, temporary side-effect).
B. Daniel may not be competent to make medical decisions for himself. Therefore, his parents would have to make the decisions.
C. His parents (his mother specifically) have not followed medical advice from their doctors and the alternative practitioners who recommended that chemo should be given in conjunction with alternative treatments, not alt. med. on its own as their religious group was advising. Not following through with measures that will save your child’s life is medical neglect. No one was saying they had to stop their alt. med. treatments, only that they must seek life-saving measures that are available because Daniel did not understand that refusing means that he will mostly likely die.
D. Daniel’s mother received news that her son’s tumor had grown while taking the “alternative” treatments and refused to take him to any of the oncologists recommended by their GP. That is criminal behaviour under child protection laws.
There was recently a case where a girl died from toxicity related to diabetes and their parents “treated” her with prayer. She suffered ketoacidosis and died. Click on that link and read those symptoms and tell me that’s not neglect. I frakking dare you. Also, consider the case of a child that died of exzema. You just read that. She got septic and died of a treatable skin condition because her parents treated her with homeopathy and refused proven medical treatments. When parents ignore symptoms and let their children suffer that is neglect. When parents stop life-saving treatments despite evidence that this avoidance is making their child worse, that is neglect. Lament all you want about your precious alternative treatments, but these children paid for their parent’s unfounded beliefs with their lives. Sometimes the experts are right for a reason. Not because of a giant conspiracy, but because they are right.
I’m all for personal freedoms. But our children must be protected from our ignorances and prejudices to save their lives. There is no reasonable support for Big Pharma paranoia (I’m aware that they engage in nefarious activities, but that doesn’t mean the drugs don’t work — see ad hominem fallacy) and Big Med paranoia. No one is saying that people can’t seek their alt. med. treatments — we will say it’s a silly waste of money, but you can go ahead and spend it if you want to. But you absolutely cannot refuse to give your child the medical treatment they desperately need and expect that that is your right. It is not. As I said above, this is akin to not feeding your child or denying them shelter and clothes. These are obvious cases of neglect and, to me, so is refusing to save their frakking lives because of stubborn paranoia and misguided ignorance of expert advice.
We are more knowledgeable consumers these days, and that’s great. But its given people a sense of entitlement and self-importance that is undeserved. We are the experts on our own condition, but we must realize that we don’t know everything. This is why we seek advice. Sometimes that advice is something we don’t want to hear. While we have the “right” to choose unfounded and radical medical treatments and refuse proven effective treatments if we want to, should we? And should we risk that with our children? A little critical thinking can go a long way. These are complicated issues and there is often no perfect solution when the law has to get involved, but I for one will be relieved if it is not too late to save this kid from himself and his parents if he truly does want to live.