Wednesday, July 19, 2006

Rational Choice in Medical Treatment: Part II

Martin pointed out, accurately, that a couple of days ago I did not actually address the question of whether a 16-year-old be allowed to choose his own medical treatment. Instead, I went off on a tangent. I wanted to bring a different question to people's attention. "Is it okay that a 16-year-old lacks the fundamental tools for making an intelligent decision?"

Why do we think that there is an important moral question to be answered regarding whether a 16-year-old be allowed to make choices regarding medical treatment, yet we assume that it is okay to raise a 16-year-old who lacks the ability to think rationally about making such choices?

If I were to address the question of whether this 16-year-old be allowed to choose his own medical treatment, my answer is, "I do not know." I do not have all of the facts available. I would consider my ability to answer that question in this case to be like proclaiming an accused man guilty or innocent of a crime based on a single newspaper article.

The minor, in this case, provided hours of closed-door testimony as to why he does not want to go through another round of chemotherapy. I can imagine cases where medical treatment is so harsh that I would choose to die rather than undergo such a treatment. Though I know that there are others who value survival at all costs, I am not one of them. I would expect others to respect my wishes. Accordingly, I cannot say that this minor is "wrong" to assert that the discomforts of chemotherapy simply are not worth it.

At the same time, this minor is seeking a quack medical procedure with as much of a chance of success as "no treatment." This suggests that he is not being entirely rational. He is acting like a person who has come to believe that 10% (chance of survival for those who use this quack treatment) is greater than 10% (chance of survival for those who obtain no treatment) which is greater than 85% (chance of survival for those who get treatment).

Is his choice actually based on placing a higher value on avoiding the ill effects of chemotherapy over life? Or is he being irrational in his choice of means for realizing his actual values?

I do not know.

In this case, I think that it is important to note that the parents are backing up the child's decision. This is not a case where a minor is having a choice forced on him by his parents. This seems to be a case where a 16-year-old child went to his parents (after having gone through chemotherapy once) and said, "I don't want to go through that again." I am making an assumption that the parents, having seen their child's determination, said, "Okay, we won't force you to do that again. We will support your decision, whatever it may be."

It is also relevant that this is not an uninformed decision. The minor has gone through chemotherapy once before and is basing his current choice, in part, on that experience.

Yet, even here, the mere fact that a minor makes a particular decision and the parents are willing to support it does not make the decision inviolable. A child may make a decision to spend every day watching cartoons, and a parent may support it, and yet that parent may still be charged with neglect. The parent’s duty is to do that which is in the child’s interest, which is often not what the child wants.

The First Principle: Burden of Proof

In principle, I tend to prefer using the same standards that one uses in a criminal trial. In a criminal trial, we (or, at least, those of us who are not Bush Supporters who have abandoned any sense of justice) work on the assumption that a person is presumed guilty unless proven innocent. The burden of proof is on those who assert guilt.

In matters such as this, I would argue that we assume competence unless incompetence is proven beyond a reasonable doubt.

Indeed, I would argue for a stronger presumption in these cases then I would argue for in criminal law.

There are organizations in this country devoting a great deal of effort to filling the courts with judges who have abandoned reason for faith. I think it is quite likely that, some time in the future, an atheist parent with a sick child might have their decisions question. The child says that he wants chemotherapy for his cancer. The parents back the child's decision. However, a faith-based social worker takes the case before a faith-based judge who says, "The problem in this home is their lack of religion. God is punishing them for their lack of faith. What this child needs is not chemotherapy, but prayer. We should remove the child from this obviously unhealthy family arrangement, put him in a good Christian family, built up his faith, and let God take care of the disease."

In order to prevent this from happening, I would argue for a set of general principles that put the right to choose medical care on the same level as the rights to freedom of the press or freedom of religion.

These standards have never been absolute. The right to freedom of press has never allowed one to yell “Fire!” in a crowded theater. The right to freedom of religion does not give a parent the right to kill a child who misbehaves regardless of his ability to quote scripture in defense of that action.

What these standards do is to define a strong presumption in favor of liberty – one that requires a compelling state interest to outweigh.

So, this minor and his parents begin with a strong presumption in their favor – a presumption that requires those who would take away their freedom to come up with proof beyond a reasonable doubt against the decision that the boy has made and the parents support.

The Second Principle: Harm to Others

This part is important. It is easily proved to be true, and everybody accepts it as true in passing, yet many people act as if it is false, and sometimes assert that it is false when it is convenient to do so.

The principle is this: The state has no obligation to accept all belief systems as equally valid. It may . . . indeed, it must . . . identify some belief and value systems as unacceptable and punish those who act according to those belief/value systems.

The prime example is a belief/value system that makes a person a danger to others. A person who believes that he has a duty from God to kill all the Jews or blacks, for example, cannot legitimately appeal to the First Amendment and say, “Congress shall pass no law prohibiting the free exercise of my religion.”

This is wrong.

Congress not only has a right, bit has a duty, to prohibit the free exercise of those religions that command their followers to kill, burn at the stake, crucify, maim, mutilate, imprison, pillage, destroy or take the property of others or to deny them the means of providing for their own well-being and that of their family.

Similarly, no person (and no majority of persons) has the right to make Congress the instrument through which they practice religious commandments to kill, burn at the stake, crucify, maim, mutilate, imprison, pillage, destroy or take the property of others or to deny those others the means of providing for their own well-being and that of their family.

Relevant to this case, just as the state may command that individual treat their neighbors in certain ways and not permit freedom of belief to be used as a license to do harm to their neighbors, the state may command that individuals care for their minor children and not permit freedom of belief to be used as a license to do harm to their children or fail to protect them from harm.

It counts as a great absurdity for a person to do harm to his neighbor and to

Consistent with (1) above, the state should begin with a strong presumption that a person is not doing harm to their neighbors, or their children, or failing to protect their children from harm. However, if evidence can be provided beyond a reasonable doubt that individuals are doing harm to their neighbors or their children, then the state may interfere with those practices.

Once again, I wish to repeat, the standard of proof here is “proof beyond a reasonable doubt.” A “preponderance of evidence” or a “reasonable to believe” case is not sufficient. The case must be so strong that no reasonable person can deny its merit – the same standard that we use to prove guilt in a court of law.

Conclusion

In applying these two standards to the case at hand, I cannot say for certain what my decision will be.

As far as using this phony cure from Mexico, I hold that there is proof beyond a reasonable doubt that this is snake-oil and no responsible parent would serve snake-oil to their child. The freedom of belief does not include a freedom to poison one’s child, or the freedom to feed a child snake-oil instead of medicine, which has the same effect.

However, I cannot say beyond a reasonable doubt that it is unreasonable for a person to say, “I am not willing to pay the costs (not only in terms of money, but in terms of undesirable effects) of chemotherapy in order to purchase a greater chance of survival.” I, for one, recognize a limit to the pain and suffering I am willing to endure even if it were necessary to purchase my survival.

Because of this, I cannot render a private judgment one way or the other in this case. I do not have enough information. However, I can – as I have done – describe the principles to be used in finding an answer.

4 comments:

Eric said...

"He is acting like a person who has come to believe that 10% (chance of survival for those who use this quack treatment) is greater than 10% (chance of survival for those who obtain no treatment) which is greater than 85% (chance of survival for those who get no treatment)."

?? Typo ??

Alonzo Fyfe said...

Yep. Thanks.

Robert said...

Well you could say that they decided that the chemo wasn't worth it... and then decided to try any other treatment that doesn't cause that kind of suffering, even if it is most likely a crock of crap.

As long as they didn't base their decision on giving each treatment an equal chance of success...

DavidJ said...

Looking at the BC Cancer Agency information on the Hoxsey treatment, I'm not convinced that there is sufficient evidence to discount it as a viable therapy option. My instinct as a scientist is to proclaim it utter crap, but the fact seems to be that there have been no placebo-controlled, doubleblind clinical trials in humans. If that be the case, than you can't truthfully equate "no evidence that it works" in scientific parlance to "doesn't work" in layman's terms. Your argument that the giving the Hoxsey treatment rather than chemo has the same effect as poisoning a child does not hold because there exists (according to my reading of the BCCA compilation) no evidence to support it--not evidence to support a null hypothesis, but NO clinical evidence at all. (The sources CA 1990 and CA 1993 are particularly weaselly; it is interesting that they are anonymous!)

Given that some (many?) placebo treatments improve outcome over no treatment, especially if the patient believes in the treatment's efficacy, I think the kid should be allowed to follow through with Hoxsey...I myself wouldn't do it, nor would I pay for it for my child, but as I understand your system (and given the above), there isn't a moral argument against it.