Daniel Hauser, Child Neglect, and Freedom
We recently discussed informed consnt as it applies to the Daniel Hauser situation. Since then, Jane Doe left a comment on that post which I felt justified me explaining my full thoughts on the subject.
Jane Doe appears to be exactly the kind of person who I fear. As far as I can tell she’s a well spoken, polite, intelligent woman, who cares about her children. Despite this, she this is about freedom.
It’s about child neglect, and informed consent.
She feels that this case is about the medical establishment taking away our rights. She’s in favor of alternative (She prefers the term holistic) medical treatments.
I don’t prefer the term holistic. The implication of that term is that conventional medicine is not holistic. This just isn’t the case. When a patient comes to see me, I am treating the whole patient. I’m not a fan of the term alternative either, because it paints these treatments as equal too, but separate from regular medicine.
But I digress, what’s important about Jane, is her opinions about the Hauser case, and why they’re wrong. Forgive me if you’ve read my comments all over Orac’s blog, because this is many of the same arguments, hopefully clarified enough to be legible.
As I said above the fold, this case is entirely about
1) Child neglect.
2) Informed consent.
I’ve said this countless times, and multiple blogs. Yet noone ever addresses those points when they argue.
I don’t know if the youn man understands his illness, but the ‘lawyers’ and doctors threats took away the freedom to learn what choices there were.
This is entirely the point. It’s not just that we don’t know IF the young man understands his illness. In the comments on my previous post, you can see the court transcript. It is 100% clear he does not understand his illness.
He’s 13! How much do you think a 13 year old is capable of understanding here? From neurology, psychiatry, and generations of parenting experience, we understand that 13 year olds don’t have entirely developed minds. Most of them are still very concrete. Abstract thought is still in its very early stages.
What does that mean? It means that most 13 year olds aren’t capable of judging the value of a sacrifice now, to justify a benefit later. That’s why when you’re 13, it’s much easier to see the value of playing Goldeneye, 007 on nintendo 64, and not so easy to see why you should be studying for your algebra class. Mom, dad, I know you’re reading this, and smirking. As well they should be, at 13, you aren’t capable of undertsanding that.
He certainly wouldn’t be capable of judging the value of chemotherapy and pain now, vs the possibility of dieing soon without chemotherapy. The “soon” just doesn’t register apropriately. The “dieing” just doesn’t register appropriately.
Furthermore, his mother lied to him. She told him that the herbal treatment she found on the internet is 100% effective in treating Hodgkin’s Lymphoma.
He doesn’t think that he’s choosing between life and death. He thinks hes choosing between chemotherapy, and equally effective herbs. It is 100% clear that herbs are not effective for Hodgkins lymphoma, and that chemotherapy is effective.
IF he understood the information involved here, you could have a discussion about choices in healthcare here. If he knew what the prognosis of untreated (by chemotherapy) Hodgkin’s lymphoma is (poor), if he knew how effective chemotherapy is (90% at his stage at diagnosis), and if he understood the consequences of NOT taking chemotherapy.
Daniel doesn’t understand any of that. So no argument starting with “well Daniel has a right to do X” applies. Just like your 2 year old doesn’t have a right to refuse shots because they hurt.
Now if you want to talk about his mother’s rights, thats a different discussion. . His mother also clearly doesn’t understand the risks involved. She has made her decision, from what we can tell, based on her religious ideas.
Thats where we get to child neglect.
You can refuse whatever treatment you want for yourself because of your religion.
You can’t make that decision for your child.
You can say “Antibiotics steal the soul, so I won’t take them, I’d rather die of urosepsis.”
You can’t say “Antibiotics steal the soul, so now my 13 year old son will die of urosepsis.”
That’s child neglect.
When there is a known, very effective conventional treatment, that is considered standard of care, for a potentially life threatening illness, a parent cannot deny their child that treatment based on their religion.
You can sacrifice yourself.
You can’t sacrifice your child.
That’s all there is too it.
The example I bring up here again and again is Christian Science. Christian Scientists don’t believe in all sorts of medical treatments. One specific one is no antibiotics. If a Christian Scientist infant ends up in your ER with a fever of 102, you give that child antibiotics. The parents’ objections about religion don’t matter. That fever in an infant demands the treatment, religion or no. To not give that treatment is child neglect. It’s such a textbook example that this was explicitly a question on my practice board exam.
Don’t say “well my child will obviously follow my religion.” Statistics don’t bear that out in this country, but even if they did, it’s not a sure thing, and the courts have already said “you can’t make that call for your child.”
Now, if you’ve received standard of care, you’re more than welcome to stop giving further care. If Hauser had already received the normal standard chemotherapy, and either had a recurrance, or failed chemotherapy, it would be a different story. If that was the case, the family would be more than allowed to withdraw care.
Jane also said
This case represents the biggest concern I have had for many years…and that is the rights of the family and individual making decisions in thier healthcare being over turned by the state, government and medical establishment.
This is not about the rights of the family. It’s about the understanding of the family. You can make decisions about your healthcare, but they must be informed decisions. When they are not informed decisions, it’s hard for us to stop you from making them for yourself, we dont’ try. We can however, stop you from killing your child through ignorance. Sometimes. Sometimes we can’t. When we can’t it’s a tragedy. It’s not an exercise in freedom.
If Daniel’s mother had understood the options, and, separate from her religious beliefs, decided that there was a good reason not to do chemotherapy, this would be a different case too. If she said “Both Daniel and I understandd that not receiving chemotherapy is likely to result in his death. We understand that there is evidence that herbal therapies don’t work, and that my religious beliefs are no reason for him not to receive chemotherapy. I understand the actual risks and benefits of chemotherapy, but we would both still prefer that he not receive treatment,” then we’d be in a different situation.
In that case, Daniel and his mother would have made an informed decision that I disagree with personally. But thats their decision. That would be their right. That would be their freedom.
Freedom is only freedom with understanding. “Freedom” without understanding is really living in bondage to your ignorance.