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May 20, 2009

My unpopular opinion on the Daniel Hauser case

A Minnesota judge recently ruled that Daniel Hauser, a 13-year-old cancer patient, must be evaluated by a doctor to determine if the boy would benefit from restarting chemotherapy over his parents' objections. If it is determined that he would benefit, then the judge will order him to undergo treatment. If his parents refused, he would be placed in foster care.

Update: We learned today that Daniel and his mother, Colleen Hauser, have disappeared; an arrest warrant has been issued. (For court transcripts and other information on this case: Minnesota Judicial Branch.)

Now at first look most people wouldn't see anything wrong with this ruling. The general consensus would be "those crazy parents need to save their son's life!" And I can't say that I totally disagree with you. But the issue I have with this case is the potentially dangerous precedent it sets. By ordering this boy to undergo chemotherapy and/or radiation, the judge is overstepping into some areas where I don't think the courts belong.

I admit that it's very hard to look at this particular case and see the bigger picture. Who wouldn't want to save this boy's life? I completely accept that my opinion is not the popular opinion (nor is it necessarily the opinion of the entire ESC), but this case brings up a few different serious issues for me...

The Right to Religious Freedom

Daniel Hauser and his family are members of the Nemenhah Band, a Native American religious tradition that does not belief in modern medical intervention (they use only natural remedies) because of a basic tenet to "do no harm". There are several religions that do not believe in certain forms of medical treatment although the most commonly known is Christian Science. (You all know how I love me my Mary Baker Eddy!) I won't presume to say that any one religion is wrong or right... but I do know that this country was founded on the fundamental right to practice your own religion as you see fit.

The Rights of Parents

The child's court-appointed attorney referred to the decision as "a blow to families" as it "marginalizes the decisions that parents face every day in regard to their children's medical care. It really affirms the role that big government is better at making our decisions for us." Even though in this particular case, maybe the judge's opinion is the right/better one (maybe) I worry about what the potential outcome of this case.

Parents have a constitutionally protected right not to have the state interfere with decisions they make regarding the upbringing of their children, including decisions about medical care. Obviously that has its limits. My concern is that this ruling will use an extreme case to further limit parental rights, even in less extreme cases.

The Right to Body Autonomy

This goes beyond what Daniel's parents would choose for him... according to court transcripts Daniel does not want to undergo chemotherapy again. He really doesn't want to
. Adults have always had the right to refuse medical intervention, decline invasive procedures, and sign DNRs. Just because you're under 18 doesn't mean that you shouldn't be able to make important decisions about your own health, especially if those decisions are supported by your parents or guardians.

This past November, a British 13-year-old won the right to refuse a heart transplant
even though she faced the risk of dying without it. (She suffered from a hole in her heart that was caused by the strong drugs used to treat leukemia
). The chairman of the British Medical Association's ethics committee declared that children her age should be considered legally competent to make informed decisions about their health as long as they understand the issues and consequences.

I don't know if Daniel Hauser is competent to make his own decisions about his health and his religion... but I know that I don't want the right to do so taken away from those who are competent. And I'm not completely clear on how exactly competency (in this meaning) is determined. Hopefully this ruling was worded in such a way that it will not obstruct the rights of any other children (or adults)
.

Discrediting Alternative Treatments

Doctors have said Daniel's cancer has up to a 90 percent chance of being cured with chemotherapy and/or radiation. Without those treatments, doctors say his chances of survival are 5 percent. Now I find those 90%-5% odds to be rather misleading. First of all, it's not actually a 90% chance of "survival" but a 90% chance that the tumor will shrink. (You can argue that the tumor shrinking equals survival, but only if the side effects of the chemo and radiation don't deteriorate his health even more).

I'm not going to debate whether chemotherapy and radiation are actually helpful in shrinking cancer tumors and saving lives. I know there are a lot of people who consider chemo to be ineffective, but we would be here all day if we got into that debate and I'm definitely not qualified to argue either side. The validity of the 90% was questioned by Daniel's parents at trial while I think they made some interesting points that I'd love to look into someday in the future, let's just assume that the 90% odds that the tumor will shrink and/or disappear are accurate.

They still can't possibly have any grounds to claim that there is only a 5% chance without the chemotherapy. Those odds suppose that if they do not do the chemo/radiation, then they are doing nothing which is clearly not the case. They are currently treating the cancer with natural and alternative treatments (with which they have already allegedly had some success). Maybe not 90% odds, but 5% isn't fair either - I don't think you can actually predict odds on something without doing some research into it. Just because the U.S. mainstream medical industry doesn't find it time-worthy or money-worthy to even attempt to study these methods, that doesn't mean they don't potentially work (at least more than 5%).

I think it's a dangerous precedent to set when the numbers really can't ever be argued fairly because mainstream medicine will never accept alternative medicine as viable. There is a clear bias against non-mainstream methods - just look at how every article on the subject has put quotation marks around the terms "alternative treatment" or "alternative medicine" as if it's some made-up concept.

There is still more to consider. Remember that chemo isn't exactly a quick and painless flu shot. It's loaded with both short and long term side effects (something even the biggest chemo proponents won't deny). Some studies have found that for many patients, although the chemo may have shrunken their tumors or eliminated their cancer cells, it did not extend their life span any longer than patients who left their cancer untreated due to complications related to their treatment.

Chemotherapy is considered to be very effective at curing Daniel's particular kind of cancer (Hodgkin's lymphoma) however studies have shown that patients who underwent chemo for Hodgkin's were more likely to develop other cancers after their remission. According to a study of over 10,000 patients, those who underwent chemo were fourteen times more likely to develop leukemia and six times more likely to develop cancer of the bones, joints and soft tissues than patients who did not. Children who were successfully treated for Hodgkin's were 18 times more likely to later develop secondary malignant tumors.


The Slippery Slope...


This time, a judge has ruled that a 13-year-old must undergo chemotherapy because of the alleged 90%-5% odds. What is next? What if the patient is 14? 16? What if the necessary "life-saving" treatment isn't chemotherapy but something even more risky? What if the odds are 75%-25%? 50%-50%?
Where does it end?

I don't blame Colleen Hauser for disappearing with her son Daniel. I can't say that I think she's making the right decision, but I know that she believes she is acting in the best interest of her son. The case refers to neglect and abuse, but I refuse to believe that the Hausers were acting out of anything but love for their son. I think they truly believe - based on information they have received from their religion's elders, studies on chemotherapy, and natural health advocates - that the toxicity of the chemotherapy will do more harm to their son than it will do good. (And maybe they have a point... it may very well shrink his tumor but you cannot deny that chemotherapy comes with a wide array of side effects. If it is their opinion that the cons outweigh the pros, who are we to tell them they don't?) Who knows, if put in a similar situation - one where I truly felt that my child was going to be put in danger - I might disappear as well. You can never really tell what you would do in a situation like that, until you've actually been in a situation like that and I'm grateful every day to have never had to face such a decision in my life.

But at the same time, I am worried. If Daniel Hauser's health deteriorates any more, then the courts will feel vindicated. I do not suggest that they will be happy, but simply that they will be able to say "see, I told you so... we were right". And that has dangerous consequences as well. It will only help further break down the line between religion and law... between family and government.
I do not agree with this ruling, not because I think Daniel Hauser is going to be fine... but because of the precedent it may set. I don't want Daniel to have to undergo treatment that he and his family and his religion are all against. Just as I don't ever want to have to be put in a similar situation where I or my child am being forced to go against our beliefs. But obviously no one wants to see Daniel die either.

My greatest hope that Daniel will become healthy again without the use of chemotherapy or other invasive mainstream methods. Wherever Colleen and Daniel are, I hope that they still have access to the alternative treatments that they feel will help him and I hope that they actually do help him. I don't know if that is actually going to happen... but since I do believe in the power of words, the power of thoughts, and the power of prayer (or whatever word your religion uses) I have a proposal for everyone reading this. No matter what your opinion is of this case or of the Hausers, the more we insist that he's going to die without chemo... the more likely he will die without chemo. Those are my beliefs - that what we say and think and do does affect what happens. (I'm not saying that it's the only factor or the most important factor, but I do believe that it plays a role).

So let's put our thoughts towards Daniel's health, wherever he is... instead of waiting for the chance to say "I told you so". And let us all be thankful for our own health and the fact that we are not in his place right now.

8 comments:

ceirdwenfc said...

I'm not going to comment on whether or not he should receive chemo against his and his parents' wills. I do wonder what would happen if he wanted the chemo against his parents' wishes.

I have strong feelings of "do as much as you can to live," but those are my opinions. I'm personally wrestling with this dilemma with a friend of mine who has a chronic condition that will eventually lead to his untimely death.

The one comment I do have is where you said that if we keep saying that he will die without chemo, then he will die without chemo.

I completely agree with you here.

Studies have shown that people in hospitals who are prayed for do better and heal quicker than patients who aren't prayed for.

There's no reason to think that it doesn't work the other way as well.

And I'd like to add that I'm not a particularly religious person.

Des said...

While I do think Daniel's parents are endangering him by refusing chemo (and I really don't understand why they would do it once and then stop), I will say that the courts forcing him would probably be the worst thing they could do. I recently was able to spend a lot of time in a cancer treatment facility with a friend. All the doctors and nurses agreed that people having confidence going in to treatment was extremely important for positive results. If Daniel went in to chemo thinking that what was happening was hurting him, while going through massive side effects, it's hard to believe that he would get better.

Bill said...

My opinion pretty much exactly mirrors yours, and I've gotten a lot of flack for it. I really hope Daniel gets the Chemo eventually, because I think it's probably the right thing for him, but as long as he and his parents are against it I don't see how the state has a right to force it on him with 1) A concerned family member/friend questioning the guardianship of the parents or 2) the state questioning the fitness of the parents altogether and looking into removing Daniel from the home. Maybe I'm just being Absolutist.

The other factor is Daniel's clear inability to judge for himself. The example you mentioned has many similar cases, where a 13ish yr old child is granted the legal right to make their own decisions, because they obviously have done the research and can make adult decisions. Daniel can't read or write, apparently did not say or understand what was put in the affidavits under his name, and from what I understand doesn't meet any criteria needed to make his own decision in the matter.

It's a tough case all around, and basically a no-win situation for the family or the government. The best that could happen is Daniel gets the chemo and the case is never used as precedent for future abuses by the government... as unlikely as that may be.

Lilith said...

Re: Des, I agree completely with the point of view. I think his resistance to the chemo alone would make it less effective and more traumatizing. I'm not saying he shouldn't get it, but just that being forced to do anything can have negative effects on a person's health.

Re: Bill, I'd say the absolute best that could happen is that Daniel gets well without the chemo.

Bill said...

Lilith: Yeah, I guess you're right... I just have enough faith in science/scientific method that his recovery through the alternative method involved (which is supplements, an organic and sugar-free diet and high-alkaline water) would feel unsatisfying to me because of it's apparent unrepeatability.

The 5% survival rate used in the trial is for those patients whose cancers spontaneously go into remission. I would assume that is what the case here would be if he were to get better with that treatment.

Chiquita said...

Without getting into the parents' rights to decide how to treat their kids, my take on this issue is that while we're all going back and forth about it, kids don't have the ability to make decisions about their lives; they're especially vulnerable to what parents choose to do...and moreover, most parents neglect to remember that children are not, by nature, religious. These parents in this situation may very well be acting out of religious fervor, but it would be a mistake to say that Daniel Hauser is anything other than a kid that most likely doesn't understand the implications of chemo unless his parents were forthright with him about it, which I doubt.

But you're right; I do think the best thing that could happen is if he were to get better without chemo would be the best thing for everyone.

Lilith said...

I guess for me, there's also the issue that having blind faith in the mainstream medical industry is considered rational and rejecting harsh/toxic treatments that have lots of side effects is considered crazy or suicidal. There are pros and cons to both sides of the alternative healthcare debate.

Rachel said...

I guess for me, there's also the issue that having blind faith in the mainstream medical industry is considered rational and rejecting harsh/toxic treatments that have lots of side effects is considered crazy or suicidal. There are pros and cons to both sides of the alternative healthcare debate.This.