Utah family refuses chemotherapy for 12 yr old son

I became aware of this story while watching the news this morning and seeing the family give a press conference. They are saying that the boy is free from cancer, even though at least 4 doctors have said that this is not the case. What they are saying:

And if the treatment isn’t performed?

I just don’t understand the parents point of view here. This doesn’t even seem to be based on religious grounds, which is what I expected to hear. They are afraid the treatment will stunt his growth and possibly make him sterile. Personally, I can think of no better way to stunt someones growth than by death. This kid needs medical attention soon, before the cancer has a chance to spread. The father says he is skeptical of the states intentions and wants to be in charge of his son’s medical treatment (even though, as far as I can tell, he has no medical training). As I see it, the state is trying to save this kids life. They were trying to do what is best for the child.

So what do you think? Is what the state did appropriate? Now that the state is backing off, if the child doesn’t receive treatment and dies from cancer, should the parents be held responsible?

Ugly. Half of me says the state should take the kid away and have chemo. The rest of me wants to know just when it is I started to think doctors were infallible and their recommendations should be followed at all times.

I will say that I think the parents’ reasoning is absurd. Being dead is sure to stunt your growth and make you sterile. If he turned out stunted and infertile, he could always decide for himself if he’d rather be dead.

Julie

The parents’ reasoning is absurd, but even so, I’m loath to support anything the replaces the judgment of the parent in how to raise their child with the judgment of the State. I think a “slippery slope” argument applies here; the more we allow the state to decide what is best for our children, the less flexibility we’ll have in raising our own. I’m sure I make decisions in raising my three girls that some would consider unorthodox (hell, some people think talking to your kids rather than whaling on them is weird), and I wouldn’t want an opening created to (a) have my kids taken away from me or (b) have a procedure performed on my child that I didn’t agree with.

Bottom line for me is that, even if we believe that the parents’ judgment is wrong-headed (which I agree, it seems wrong-headed to me), it has to be a pretty extreme case of out-and-out neglect or abuse before I would support supplanting the states’ judgment with that of the parents. This case does live right on the edge of that, but it’s on the side of the parents, to me. We might not agree with their reasons, but I don’t think we get to replace their decision with ours.

It is a tough one… really, it’s simply tragic that the boy has to suffer for his parents’ stupidity. However, letting the state step in here would be more likely to cause even greater suffering, and I’m against that.

But it’s still tragic.

I do agree, and apparently the state does too, that they can’t exactly strap a kid down and force him into chemotherapy. This is why they have decided to back off. I also think that, for the most part, parents should be able to decide how they raise their kids.

I am just having a problem not seing this as neglect. No matter how unorthadox your decisions may be as a parent, IMO, you cross the line when you endanger the child by not providing proper (and potentially life-saving) medical treatment.

If this disease indeed spreads to other areas and becomes less-treatable due to lack of early intervention, I have a feeling that stunted growth is going to seem rather insignificant at that point.

Assume for one moment that the multitude of tests run on this boy are correct and he does indeed have Ewing’s sarcoma. Now according to this site

Now, does that make it any easier for you to decide that the parents are not acting in the best interest of the child, and the child, AS A DIRECT RESULT, may die. Don’t those factors, and the fact that despite a legion of testing, the parents are still in denial about the cancer, indicate that somebody should step in to save this boy’s life?

The fact that the chemo may not work, should not mean that the child should not get it, either. At this point, it’s about his only hope of survival.

**Greater suffering than death to the child?

The child getting, if it is true, Ewing’s sarcoma is a tragedy. Not getting treatment for that child is something much more malevolent.

Their reasons are more complex, what what I read than the article mentions.

“The Jensens contend the 8 millimeter-sized lump that was removed from under Parker’s tongue was not malignant. They said each test came back negative for cancer, and that the family dentist had said it appeared to be a clogged saliva duct.”

http://www.journalnet.com/articles/2003/09/01/news/local/news01.txt

They may be deluding themselves.

They say they want to try ‘alternative treatment.’ The article mentioned a doctor “who treats 72 forms of cancer without chemotherapy.” He might be a quack, but I don’t know.

I think the state shouldn’t force the issue. Lots of people believe in ‘alternative’ medicine that I believe is total fakery. But whose decision is it?

Part of freedom is the freedom to make bad decisions.

Even when they help bring about the death of your child? Freedom shouldn’t and doesn’t extend that far.

Individual freedom does, and should, extend that far. Just because we don’t like it doesn’t mean that it isn’t true.

And believe me, I don’t like it any more than you.

So, to get you to answer the question I asked before, you think a parents freedom to raise their children extends even to the point of refusing to get medical care that is the only way to save the child’s life? Assuming the Parker Jensen has Ewing’s and his parents refuse to get him treatment, you STILL wouldn’t want the State to act to save the child’s life? How about parents who refuse to allow paramedics to save their child’s life after a car accident? What about parents who decide that prayer will save their child, while the child dies a slow and painful death from a treatable disease? I just want to make sure I have the proper definition you’re using for “freedom.”

Well, I think it has to.

Let’s look at this another way. Say the kid had a disease that, after expensive (monetarily and physically) and aggressive therapy had only a 5 percent survival rate. Would you insist a parent subject a child to that? At what point is it wrong for the parent not to subject the child to the treatment? At what point is it absolutely determined that the child has the disease? Are we prepared to say that doctors cannot make mistakes in diagnosis and prognosis?

I think the whole thing is a mess of extremely difficult, possibly even unanswerable, questions.

Julie

If the medical care consists of treatment that the parents disagree with or think is dangerous on some level, then yes, I believe it does extend that far. In this specific case, it can’t be denied that chemo has definite side effects, often difficult and painful in their own right. I’ll repeat here that I think the parents’ reasoning is, for lack of a better word, whacked. However, I don’t presume to replace their judgment with yours or mine or (especially) not the State’s.

If, once the parents were made aware of the consequences of Ewing’s and its eventual result, they were still against the chemo, then I still wouldn’t want the State to intervene.

Mind you, I hope the parents wouldn’t be that stupid/insensitive to their child. But I hope that for a lot of parents, often in vain.

Too vague. I would need to hear particulars to know where I would stand on that.

I’ve heard of cases in which this (or similar) has happened, and it saddens and disgusts me. I think it’s wrong and morally depraved… and yet I still don’t want the State to step in there. Again, my “slippery slope” argument from above applies here. If they step in in thiese cases, when does it end?

I hope I’ve cleared it up… I don’t see that these questions have anything to do with “freedom,” which has a pretty simple definition in my book.

Now that I’ve answered your questions as best as I could, would you answer a few for me? It’s pretty clear that you’d prefer the State to step in in some fashion in this case (correct me if I’m wrong here). Questions: What would you have them (the State) do for the child? Perform the procedure that the parents are against? Remove them from the parents’ care entirely? What level of control is appropriate for the State to take away from parents? And finally, at what point does the State have the right to interfere in cases like this? Where do you draw the line for when the government gets to decide that their judgment is better than that of a parent’s?

On preview: I agree with jsgoddess that this case presents extremely difficult questions, perhaps unanswerable ones in any universal sense.

No. It doesn’t have to. You can have cases where the State can take away children when the parents refuse to get their child proper medical care, which will result in the death of that child.

I’ll tell you what, how about you answer my question regarding the child in a car accident or of the death of child due to refusal to get care for a 100 % treatable disease. Of course there are grey areas, and, if you believe the parents in the Jensen case, this is one of them. The fact that it is a hard decision to make shouldn’t stop DCFS or the Courts from trying to make them. If the treatment has a only 5% rate of success, yet death is certain without treatment, it seems almost dumbfounding to me, a father of two, to believe that you wouldn’t do everything in your power to save your child’s life.

It gets more difficult when the State makes these determinations, but I don’t have a problem with a statute that allows the removal of children in certain circumstances, if the parents refuse to get proper medical treatment.

At what point is it absolutely determined the child DOESN’T have the disease? When he’s dead? When he’s so sick he can’t move? When 4 separate doctor’s say so? These issues are why DCFS gave the parents so much leeway, because they wanted to make sure the diagnosis is correct…

That doesn’t mean we shouldn’t even try to answer them.

Yes, you could have such cases. I don’t think we want to have such cases. “The State” isn’t an intelligent or even remotely infallible beast.

**

I’ll tell you what: I’m pretty damned sick of people getting snotty right off the bat. Other people, people who are more tolerant of unwarranted snarkiness, can answer your questions.

Julie

I fully and wholeheartedly believe that under these circumstances, what the parents are doing to their children is abuse. The parents here are willfully and with full knowledge of the situation, are guranteeing the demise of their son. Quite simply, I do not think that the rights of the parents extend to the point to where they infringe upon the rights of the children. To those supporting the view that the parents should decide, tell me, under what circumstances DO you think that a child should be taken away from his or her parents?

And parents are? And we do allow States to take these kinds of actions to protect children, not just in the realm of necessary medical care, but also in child labor laws, mandatory school attendence, and required vaccinations. In some cases, the parents are definitely not acting in the best interests of the child.

My apologies. I had no cause to be so rude to you.

A child is playing in the yard. A drunk driver comes out of nowhere and runs the child over, injuring her severely. Neighbors call 911 and an ambulance arrives. Before they can treat the child, the parents come out and refuse to allow the paramedics to give the child the necessary medical treatment to save the child’s life. Your thoughts?

Since 1975, 165 children have died from curable illnesses when their parents refused medical treatment in accordance with their religious beliefs.

In which case? In the case in the OP, DCFS has chosen not to take the child and force chemotherapy on the child because a good portion of the success rate of the treatment depends on the attitude and involvment of the patient. The parents in the OP have told their child that the State wants to fill him with poisons to solve something they don’t see as a problem. As distasteful as it is to second guess the parents, I wouldn’t have a problem with the State removing the child from the home and getting him the proper treatment, if he does have Ewing’s. To me, that beats the heck out of having a dead child.

Until the State is assured the child will survive.

Definition of “neglected child” any child who is not receiving the proper or necessary nourishment or medically indicated treatment including food or care not provided solely on the basis of the present or anticipated mental or physical impairment as determined by a physician acting alone or in consultation with other physicians or otherwise is not receiving the proper or necessary support or medical or other remedial care recognized under State law as necessary for a child’s well-being, or other care necessary for his or her well-being, including adequate food, clothing and shelter. Sounds good to me.

It seems these folks are making this decision based on the delusion (when three seperate labs get the same results, they’re pretty damned accurate) that their child doesn’t have cancer. Since they’re making decisions while in a delusional state, could a lawyer argue that they’re not competent to make life-and-death decisions like this?

What does the kid want to do? I mean, it is his life and his body, and he ought to have some input into the decision. If he wants chemo, and he’s likely to die without it, then I think the state has to step in and protect him from his parents’ delusion, just like they’d step in if his parents decided to stop feeding him and starve the cancer out.

I fail to see the difference between refusing a child reasonable medical care and refusing a child food. If these parents have the right to withhold chemo from their son, then this woman has the right to leave her toddler home alone, should not have her custody terminated, and should get the child back when she leaves prison.
it should be fairly obvious that i’m using hyperbole to make a point, but i’ll leave in this disclaimer just in case.

This is a no-brainer. Take the kid and give him chemo.

Well, I would imagine the kid trusts what his parents are telling him. I did find a quote from both him and his father though

The family maintains that he is “cancer-free”, feels great, and has no need for additional treatment. I would suspect that this kid knows that the chemotherapy can be very unpleasant and is probably quite frightened of the possibility of going through it. Completely understandable and I feel very bad for him. However, his parents IMO, have a duty to do what is best for him, even if that means something very unpleasant. The alternative may be death.

And the line about the cancer being unconfirmed, astounds me. How many times does one have to be independently diagnosed with the same disease before it sinks in. This sounds like a serious case of denial that may unfortunately have a very sad ending.

Semi-hijack: haven’t parents in similar situations (like that Christian Scientist family I vaguely recall) been prosecuted for negligent homicide in the past? How have those cases turned out? I’m afraid I can’t recall names, or I’d look it up myself…