Freedom of Religion vs. Death

Some of you may be following the story of Colleen Hauser and her 13 year-old son, Daniel, who has Hodgkin’s lymphoma, and needs chemotherapy in order to survive.

The family belongs to a religious group that believes in “natural” healing methods and Daniel himself has stated that he believes chemotherapy will kill him (as if the cancer won’t).  He told a judge that if anyone tried to force him to receive chemo, “I’d fight it. I’d punch them and I’d kick them.”  According to the news article,

“The Hausers are Roman Catholic and also believe in the “do no harm” philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians. Colleen Hauser testified earlier that she had been treating his cancer with herbal supplements, vitamins, ionized water and other natural alternatives.”

“Minnesota statutes require parents to provide necessary medical care for a child, Rodenberg wrote. The statutes say alternative and complementary health care methods aren’t enough.”

According to the judge, Daniel has a learning disability, is unable to understand the seriousness of his illness, and therefore not able to make an educated decision in the matter.

Personally, I agree with the authorities in this matter.  But even then, there are some difficult questions that don’t really have an easy answer:

  • Should a child be given the power to decide for himself/herself whether he/she wishes to go through a difficult round of chemotherapy?
  • How important is it that he is a minor?  If he were an 18 year-old still living under the influence of his parents and this religious sect, would you feel differently?
  • Should authorities have the power to intervene if anyone is risking his or her life under the influence of a religious sect that is dissuading them from receiving life-saving treatment or medication?
  • Is there anything to be learned from those whose involvement in the anti-psychiatry philosophy of Scientology  cost them their lives?  Did we do too little or is intervening an infringement on their personal freedoms?

Comments

comments

71 comments for “Freedom of Religion vs. Death

  1. Ray
    May 20, 2009 at 3:00 pm

    Facetious, but interesting question:

    If it’s in the best interest of society to stamp out beliefs like this with which it disagrees, wouldn’t the best approach to be to let him die? If he’s dead, he can’t have kids and participate in continuing this belief.

    I understand the distinction between adult and minor child, but when the state starts dictating exactly what kind of medical treatment MUST be used . . . Honestly, I’m torn on this one.

  2. Dexter
    May 20, 2009 at 3:05 pm

    The child is too young to decide for himself.

    The state should be able to intervene. If the state can intervene due to a parent abusing a child, even if the abuse is based on a religious teaching, why shouldn’t it be able to intervene to do what the parent SHOULD do? This cancer is far more dangerous than beating a child. But just because one is an act of commission and the other is an act of omission it should have a different standard? I don’t think so.

    At what age should he be able to decide for himself? That is a tough one. At 18 you can go to war, but you can’t drink until you are 21. I don’t know. I would say at least until he is 18 he should not be able to decide for himself. Perhaps a mature child who can manifest a clear understanding should be given the ability to consent but that would be a case by case basis, and certainly would not be applicable in this instance.

  3. May 20, 2009 at 4:14 pm

    I agree. On the other hand, I don’t trust doctors enough to give them the right to override personal agency to force their treatments on people. My father was killed by well-intentioned surgery for his cancer. It’s bad enough when he chose it himself. How horrible if it had been forced upon him by well-meaning others?

    All doctors, even the greatest, make mistakes. That’s unavoidable. What’s horrific to contemplate is doctors making mistakes that cause harm to unwilling victims.

    After my experiences with my dad, with my son who is ill, and with trying to find treatment for my own chronic health problems, I’ve decided that the patient should always direct his or her own care, under the advice and guidance of the physician. Doctors can present the various alternatives but they should not be given the stewardship of deciding. It’s too much power over another person’s life. Many doctors, though, would like to exercise unrighteous authority and force their patients to have the treatment they feel sure they should have.

  4. Dan
    May 20, 2009 at 4:22 pm

    God says we are accountable for our decisions as of the age of eight. As this boy is older than 8 years old, he is capable of deciding for himself and his choices are his own. Whether he understands the consequences is irrelevant. I would do all in my power to try and convince this boy that chemo will save his life, but as I believe a woman (even a teenager) has a right to choose over what she does with her body, so does this boy. In the end, it is his choice.

    If he were forced against his will into chemo, would he later be thankful to the doctors for prolonging his life? Most likely. Personally I don’t care one way or the other, but if I were to lean one way, it would be toward letting the boy decide over his life.

  5. Dexter
    May 20, 2009 at 4:36 pm

    Dan, I could not disagree more. This is a perfect example of letting faith trump rationality. First of all, even if you believe that the age of 8 is officially God’s “age of accountability” that doesn’t mean anyone who has attained the age of 8 should be able to decide for themselves. Second, what if the age of 8 is NOT an inspired doctrine? I’ll leave the second prong alone.

    Even assuming that God truly revealed that 8 is the age of accountability, that means at 8 people are capable of deciding between right and wrong, and are capable of sin, right? That does not mean they should have the freedom to make any decision they want to make. Dan, by your rationale, any 8 year old should have the right to decide whether to have chemotherapy, or whether to go to school, or whether to sleep over at Chester the Molester’s house. Give me a break. Would you let your 8 year old daughter choose whether to go to a stranger’s house? I think not. Would you let your eight year old son smoke a cigarette?

    Being capable of sinning (and accountable for your sins) does not make you capable of deciding for yourself at the age of eight. This is a gross and incorrect application of the age of accountability into a whole other realm of life. I want to continue because I disagree so vehemently but I think I have made my point.

  6. Dexter
    May 20, 2009 at 4:41 pm

    Let me clarify, this is not faith trumping rationality it is misguided faith trumping rationality. I believe even the most faithful member of the church won’t apply the age of accountability in this fashion. In other words, I’m not saying faithful people would make this mistake because of their faith, but those who misunderstand the principle of the age of accountability could allow their misguided faith to lead them to poor choices like this.

  7. Cowboy
    May 20, 2009 at 4:48 pm

    This isn’t an issue of agency, or a matter of whether doctors should have sole discretion on a patients treatment. This is about the role of the state over the rights of a parent in religious affairs, and that’s what makes this a difficult issue. On one hand I think the State has a responsibility to step in, for the sake of a child, when parent prove derelict in their obligation to protect their Children. But on the obvious other hand, I don’t like the State having the decision making power over a parent, or to interfere reasonably with religious upbringing. I think I would have to settle on the lesser of two evils where the parent *& child* are ultimately respected with their rights to determine the methods of treatment. I think the alternate solution could lead to a progressive movement that could separate us from our rights. I would make an exception for the States authority however if the child objected to the parents philosophies and accepted conventional medical treatment. Even Children should be given some rights as minors when choices made in their behalf are well oustide of the norm, though I recognize that could be a complext issue also.

  8. brjones
    May 20, 2009 at 4:55 pm

    Dan, this is frankly one of the most frightening things I have ever read. I don’t want to repeat what Dexter has said, but I pray to god that you don’t have young children, and that’s why you have taken this stance. I have an eight year old and she is still struggling to read her 3rd grade primers. I can’t really even fathom how she would do reading a medical journal synopsis explaining the cancer that was eating her body to death. The fact is, an eight year old is absolutely incapable of understanding the gravity of a situation like this. Most eight year olds still have no grasp of death even as an abstract concept, let alone the reality of their own impending death. Additionally, virtually all eight year olds will act in the manner in which they have been encouraged by their parents, regardless of whether those actions are in their best interests or not. That’s pretty close to the legal definition of sound mind as far as the law is concerned. No way should we as a society allow any person to choose their own death who is incapable of understanding the consequences of their actions. Thankfully, we don’t.

    This is a separate issue from that of whether the child’s parents should be able to decide. I unequivocally believe the state has the right and the responsibility to step in in this situation. The deciding factor for me on this issue is the fact that it is a minor who is unable to choose for him/herself. A parent absolutely has the right to choose how to raise his or her child, but parents would not be allowed to voluntarily kill their child in a religious sacrificial rite (not that this is tantamount, but it illustrates that there are limits on what we as a society allow parents to do with their children in the name of religion). Since we would all agree that the state has the right to step in in SOME situations, the question is simply where the boundaries are. And I’ll go Dexter one further – not only would a parent be liable for beating their child, they would be liable if they knowingly allowed someone else to abuse their child. The point is, the well being of a minor child absolutely trumps the rights of a parent to involve that child in whatever religious activities they want to.

    Personally, if the child dies, I believe the mother should be charged with negligent homicide, at least.

  9. brjones
    May 20, 2009 at 5:08 pm

    Cowboy, I have a lot of respect for you, but I just don’t understand how you could say you would feel differently if the child disagreed with the parents. I find that unbelievable. Not only is this a 13 year old with parents who subscribe to some pretty strong beliefs, but he has a learning disability and can barely read or write. A 13 year old who can barely read or write, with fanatical parents, and you advocating letting the child decide whether he wants to have the treatment? He told the judge that he’s convinced that chemo will kill him. Where do you think he got that belief from? There’s no way the state should allow him to decide in this case. I think every case is different, but in this instance, the child has no capacity to understand both sides of this issue.

  10. Cowboy
    May 20, 2009 at 5:11 pm

    Brjones:

    I can see this mothers attorney arguing that there was nothing negligent at all about the Mother’s interactions. She met with the doctors, they diagnosed the condition, they sought level’s of therapy, and then ultimately decided on a religious solution. Since there is no guarantee that the doctors treatment would work, the parents may have a reasonable argument, particularly if they feel that the Chemo therapy will not help their child.

    Secondly, before anyone is too hard on this family, let’s not forget that Mormonism’s holy family, Joseph Sr. and Lucy Mack, allowed their juvenile son to undergo an excruciating procedure without the aid of anathstetic, brandy. As far as I can recall that was in defiance of the good doctors counsel and subjected him to unfathomable pain.

    I personally think these guy’s are nuts to not follow the best wisdom available, but what would the long term effects of such a decision. Should the State be given this much control? What about the polygamists in Texas (FLDS)? Isn’t this a similar sort of situation? Should the State be granted authority to take their childre?

  11. Cowboy
    May 20, 2009 at 5:14 pm

    BrJones:

    I may not have been clear, but I am saying that the Child’s opinion should only be considered when they are choosing a socially acceptable route in objection to the unconventional (whacky) views of their parents

  12. brjones
    May 20, 2009 at 5:22 pm

    I think I understand your point, Cowboy. Personally, I think you have to disregard the child’s opinion in this matter, because a) he is incapable of understanding the issues; and b) he is going to parrot whatever his parents have told him to say, in all likelihood.

    As to the facts of this particular case, the child at issue has Hodgkins Lymphoma, which has a 90% recovery rate with chemotherapy treatment, and a 5% recovery rate without it. I agree wholeheartedly that the facts of the case should be considered individually, and state intervention should be avoided if at all possible. But in this case we’re not just talking about the doctors thinking one thing is best and the parents thinking another is best. The bottom line is, if he gets chemo he’ll almost assuredly live and if he doesn’t he’ll almost assuredly die. This is a very extreme case. The parents want to continue on a course that is going to lead to death for their child, as a virtual matter of fact. That’s very distinguishable from your scenario above, Cowboy, I think. Let’s also remember that he wasn’t just diagnosed today. The diagnosis was made in January and the mother has been giving the child her natural remedies for almost 5 months, and the child just had a follow-up visit that showed the tumor has grown and spread. I think the facts of this case absolutely warrant the state saying, “these parents have been given ample opportunity to help their child using alternate methods, and those methods have been PROVEN ineffective. At this point we are not going to stand by and let them watch their child die.”

  13. Dexter
    May 20, 2009 at 5:38 pm

    I don’t even think this is really a freedom of religion issue. You can call anything religious. Didn’t the Supreme Court rule that the smoking of peyote, despite its religious use, was not permitted because the law applied to all, it was not targeting a religion. In other words, if a law of the state precludes ALL from abusing their children, it doesn’t matter if it is the doorway to heaven for a religion. The law is not aimed at preventing a specific religious group from worshiping, it is aimed at protecting children and the group’s religious views become irrelevant, it is not permitted. That is the case here, the state is not going to permit a parent to hurt a child, be it by committing abuse, or avoiding obviously necessary treatment. Religion, to me, is not part of the equation. The issue is one of parents’ rights. And as I have said, if they can’t abuse kids, they can’t neglect treating them.

  14. Cowboy
    May 20, 2009 at 5:41 pm

    BrJones:

    You’ve caught me, I haven’t been following this issue at all. To be honest, I was speaking rather generally because I am not at all aware of the situation here. Your explanation in #12 does make a stronger case for State intervention. I guess what would make some of the difference to me is whether the parent’s religiously object to the chemo therapy in such a way that they believe that their son could go to hell if he recieves it, or if they find it morally and/or spiritually reprehensible. If that is the case then I have a hard time with it, not because of this issue, but because of the long term implications. In other words I favor the individuals rights at the expense of stupid decisions, in order to preserve said rights. On the other hand, if we lived in another time and place and my name was Solomon, you better believe I’d be ordering the chemo therapy.

  15. brjones
    May 20, 2009 at 5:43 pm

    To Dexter’s point, I would agree with Cowboy if we were just talking about a situation where parents disagreed with the course of treatment, as to its effectiveness. This is not an issue, nor do I remember a case ever of the state stepping in where a parent thought a recommended treatment would not be effective. That is not the case here. They know their child will die, and they want to continue anyway for religious reasons. And by the way, if they honestly believe their treatment will be more effective than the physician recommended treatment, they are insane and have no business having guardianship of any child.

  16. Cowboy
    May 20, 2009 at 5:46 pm

    Jehovas Witnesses generally oppose blood transfusions, which I think has been the subject of this type of debate on more than one occassion.

  17. Dexter
    May 20, 2009 at 5:48 pm

    Cowboy, what difference does it make if they believe chemo will send him to hell?

  18. living in zion
    May 20, 2009 at 8:16 pm

    I believe it is the parents right to choose what is best for their child. I agree that the parents should provide authorities with a health plan, showing that they are doing something, but it is not for the courts to decide which treatment is “best”.

    This is a slippery slope. I personally choose ANYTHING over chemo/radiation. Thank goodness I am a grown up.

  19. Dan
    May 20, 2009 at 8:26 pm

    I’m just not convinced in this case that this particular boy is not capable of understanding what he wants. I think he is. Furthermore, I think his parents understand too, and are not being negligent toward their son. They are not neglecting their responsibility as parents to raise their child up as they should, according to their religious beliefs. The state, frankly, has no right to interfere. Just like the state had no right to interfere in the Terry Schiavo debacle back in 2005.

  20. Cowboy
    May 20, 2009 at 8:29 pm

    Within certain limitations part of religious freedom is the ability to pursue a course in mortality that we feel offers the eternal rewards. The State has no right to interfere in that process, except in extreme cases where the chosen course will adversely impact the rights of another. Obviously if we feel God requires us to commit murder in order to get to heaven, the State has an obligation to interfere, but situations such as these are rare. This is an important right, and should not be undermined just because some of us feel that we have more enlightenment than another. I suppose an argument could be made that the parents religion is adversely affecting the rights of their child, but again this is a tough one because where do we draw the line regarding a parents right to raise their children in manner they feel is best. In a simple world I would agree with you, but we don’t live in a simple world, rather it is highly pluralistic – I believe that maintaining these boundaries, even when it’s not what we would prefer to do, is the only thing that keeps those right’s and privliges in check.

  21. MH
    May 20, 2009 at 9:04 pm

    This is a real tough case to decide. From what you all have said, it does seem like the state did the proper thing.

    There was a similar case here in Utah. A 12 year old boy named Parker Jensen was diagnosed with some form on cancer in his mouth by a dentist. According to doctors, it was highly curable by chemo. The parents refused, took the boy to Idaho, and were charged with kidnapping. The parents eventually won the case, treated the boy with alternative medicine, and the boy is still healthy to this day, now 18 years old.

    See http://www.patriotsaints.com/MyChildMyChoice/cases/ParkerJensen/ for plenty of links about the case.

  22. May 20, 2009 at 9:13 pm

    Medical treatment by force is not really treatment anymore, it’s a form of torture. The good of the treatment would be more than offset by the harm of the use of force. Sort of like how Satan’s plan, though it saved every one, would not have been right. I think rather than force this with the arm of the state, I would try persuasion and reason, if I were this family’s doctor. If that failed, I’d probably resign as their doctor over it, stating my reason that the chances of a good outcome were low with the course they’d chosen. I’d do that in the hopes that it would change the parents’ minds. In the end, though, we have to have the humility to admit we don’t know everything, and don’t have stewardship over other people’s lives. We have to just hope and pray for things to turn out right.

    If I were this boy I would scream, fight, run away, do anything at all to avoid getting a treatment I was convinced would do me harm. There’s no good to be done by administering chemotherapy to an unwilling victim. It’s just too invasive, too horrible. It would be like rape.

  23. May 21, 2009 at 1:14 am

    There’s a reason the court system makes child abuse/neglect decisions on a case-by-case basis. If the court determines that this kid is not competent to make this medical decision (and that failing to provide this well-tested, effective treatment for his fatal illness is neglect), then that’s not the same as saying the state can dictate everyone’s specific medical/therapy choices. The court also has the power to decide cases to put people in jail, but that’s not considered a “slippery slope” to grant the state power to round up just anyone and throw them in jail.

  24. May 21, 2009 at 2:44 am

    “Medical treatment by force is not really treatment anymore, it’s a form of torture. The good of the treatment would be more than offset by the harm of the use of force.”

    There is a delicate balance between personal freedoms and having to use force when the patient is unable to fully understand the consequences. I see it often in my job with dementia patients. Some will refuse to take their essential meds. We can’t force them to take them, so gentle persuasion usually eventually works, even if it takes a few tries. We have some patients who refuse to bathe — and I mean they would NEVER EVER take a bath unless we force them to. Sounds kind of mean, doesn’t it? But we have a responsibility to make sure there are at least minimum hygiene standards, for the sake of the patient and for the sake of the other patients. You could say that it’s mental “torture” for these patients to have a bath. Maybe it is. But do we have a choice? Would it be better for him to waste away in his filth and develop additional illnesses because of lack of hygiene?

  25. May 21, 2009 at 2:47 am

    Oops, I should add that the patients I work with have dementia have a limited grasp on reality due to their illness and can’t make many decisions for themselves.

  26. Dan
    May 21, 2009 at 4:39 am

    The Faithful Dissent,

    But there’s a vast difference between having dementia and being a cogent 13 year old boy. I have to hearken back to religion, but remember, Joseph Smith was 14 when God and Jesus appeared to him to talk to him about some highly important things that surely he knew not the significance of at the tender age of 14.

  27. May 21, 2009 at 6:42 am

    I agree. On the other hand, I don’t trust doctors enough to give them the right to override personal agency to force their treatments on people.

    An excellent point. Right now we have low fat, high carbohydrate diets that happen to coincide perfectly with:
    * massive changes in the number of people who are obese or have diabetes and heart problems.
    * a huge jump in income for cardiologists (who just happen to have pushed the diets).

    15% of the federal budget is consumed by treatment for the side effects of the modern diet.

    On the other other hand ….

  28. May 21, 2009 at 7:02 am

    Yes, there are many differences between dementia patients and children. My point, though, is that both of them don’t always know what’s for their own good. In the case of the former, it’s because of a brain-wasting illness. In the case of the latter, it’s immaturity.

    I agree that doctors don’t always know what’s best and that patients should have the right to refuse a treatment or get a second opinion, etc. But in the case of this boy, it seems like a no-brainer. No chemo = death. It’s not like we’re talking about a rare illness that no one really knows what the best course of action is. Everyone knows what will happen if he doesn’t get chemo and there aren’t any rational medical alternatives, IMO.

  29. Kari
    May 21, 2009 at 8:07 am

    In our society, we have determined that the age of legal majority is 18. Until that point you are considered a juvenile and are not considered mature enough to make many types of decision. A juvenile cannot legally enter into a contract, she cannot vote, etc. There are well known exceptions and in individual cases a teen can even be declared an “emancipated minor” and then have all the rights, responsibilities, and privileges as an adult. But those decisions are made individually.

    In the case of Daniel Hauser, I would encourage everyone to read the actual court documents. They are available here. Especially read the Transcript of Daniel Hauser’s Testimony and The Guardian ad Litem’s Final Argument.

    Here are some facts about Daniel Hauser that may help understand this case better.

    1-He is 13 years old and until this past year was home-schooled.
    2-He recently started school and was placed in the 3rd grade and has IEP.
    3-His Guardian ad Litem has testified that he is unable to recognize the word “the”.
    4-His mother claims Daniel is a “medicine man” in the Nemenhah Band.
    5-Daniel is unable to explain, and clearly doesn’t undertand, what it means to be a “medicine man” in this “faith”.
    6-Daniel clearly doesn’t understand anything about his disease or the risks and benefits of treatment. All he knows is that his first round of chemotherapy (which initially shrunk his tumor) made him feel “sick” and he doesn’t want to feel that way again.

    It is clear to me, from reading the public records in this case and my knowledge of Hodgkins lymphoma, that this boy faces a certain death if he is not treated with chemo and radiation therapy. There is no evidence that his current “natural” treatments are effective. In fact, his most recent x-ray, performed on May 18, shows that the tumor has enlarged, is now pushing is trachea (windpipe) to the left, and has caused the end of his central line to be pulled back due to the expanding volume in the chest. So clearly, what his mother has been doing for him these past four months has not been beneficial at making his cancer go away.

    The law in Minnesota is that parents must provide “necessary medical care” for a child and that “complimentary and alternative health care” is not sufficient to meet the statutes. By law, Daniel’s mother is required to provide medical care to her child. She is not doing this.

    In his final decision, the judge stated, “The Hauser family members have a constitutional right to freedom of belief. The parents also have a right to parent their child that is based on the Due Process Clause of the United States Constitution. These constitutional freedoms can be overcome only upon a showing of a compelling state interest.

    “Correspondingly, there can scarcely be imagined a governmental interest more compelling than protecting the life of a child.”

    The difficulty in this case is that Daniel has said he will “kick and punch” to avoid chemo again. His oncologists have also said that they would not tie him down to administer treatment. However, it is also the position of the physicians that with counseling and education they can get Daniel to understand the seriousness of his disease and need for treatment. If he continues to refuse, he will die, and ultimately it will be his choice, even at 13.

  30. Kari
    May 21, 2009 at 8:18 am

    I understand the distinction between adult and minor child, but when the state starts dictating exactly what kind of medical treatment MUST be used . . . Honestly, I’m torn on this one.

    Ray, as I stated above, the state is not dictating what kind of medical treatment Daniel must have, just that his parents are required to provide him with “necessary medical care.” Naturopathy and “alternative” treatments are not medical care, and Minnesota, by statute, recognizes this.

    It’s not as if Daniel has a cancer that is poorly understood and offers only a 10% survival rate with chemotherapy or a 9% survival rate with radiation therapy and the court is choosing which therapy the family must choose. Hodgkins lymphoma is a well understand and treatable cancer and chemotherapy with radiation therapy is the standard for treatment. No oncologist Daniel as seen (and he has seen three, including the Mayo Clinic) has recommended any different therapy.

  31. Kari
    May 21, 2009 at 8:23 am

    If any of the admins care, the edit comments feature doesn’t work (at least for me, using Firefox 3.0.10).

    The first sentence in my comment above was a quote from Ray (#1). Sorry for the confusion.

  32. Dan
    May 21, 2009 at 8:24 am

    Faithful Dissent,

    My point, though, is that both of them don’t always know what’s for their own good.

    It can be easily argued that millions if not billions of adults do not know what’s good for them either, but it is not up to the state to decide that.

  33. brjones
    May 21, 2009 at 8:39 am

    Dan, I don’t understand why you keep saying this boy understands the issues. The court, which is intimately involved with the facts and has examined the boy personally, has found that he absolutely does NOT understand the issues. Unless you believe that the court, as an agent of the state, is inherently biased or has ulterior motives, it’s frankly unbelievable that anyone reading about this story from a distance would presume to know more about the child and his capabilities than individuals on the scene.

    Secondly, with all due respect, those of you who continue to use the phrase “the state has no right” are just flat wrong. If you want to use the phrase “the state shouldn’t have the right” then that’s fine, but the fact is, the state does have the right, as evidenced by the arrest warrant currently pending for the boy’s mother, and the fact that she will soon be in jail, and if she continues on her course and lets her son die, she will likely face severe criminal charges. We, as a society at large, have decided that the rights of a parent are not without their limits and that courts do have the right to circumvent those rights when a parent’s exercise of those rights is endangering the child. So while I personally find it somewhat disturbing to see that so many people seemingly feel that a parent should be able to do whatever they want to their children in the name of religion, I can take great comfort in knowing that the majority of society feels quite the opposite, and the current state of the law supports the latter.

  34. Kari
    May 21, 2009 at 8:53 am

    I think that one could make the argument that even if Daniel Hauser were 18, or older, his disabilities are such that he would need a guardian permanently assigned. If he survives his cancer it will be interesting to see if he is ever able to live independently.

  35. brjones
    May 21, 2009 at 9:00 am

    Again, Dan, you are confusing the issue. No one is advocating the state deciding what’s good for adults. This is an issue of a minor child, and it is long settled that the state absolutely does have an interest, and a right to determine what is in the best interest of a child. Would you argue that the state NEVER has the right to step in and block the rights of a parent in order to protect a child? If not, then I’m curious as to where the boundary is for you. I think for most people the all but certain death of the child is a fairly reasonable boundary. If that’s not appropriate, then what is?

  36. Clark
    May 21, 2009 at 11:52 am

    This is not a philosophical debate. It’s a life-and-death struggle for a very real family. Nevertheless, there are some good principles here:
    #22-Free agency (ahem…Moral agency) dictates that “forcing” the boy to be saved is very similar to a technique Satan advocates.

    #32– “millions if not billions of adults do not know what’s good for them either, but it is not up to the state to decide that.”

    So really, this is a religious issue AND a political one. Being raised a “McConkie Mormon,” my belief is that parents should be solely responsible in this decision (and the consequences) and government should butt out of private affairs.

    That said, if I had to draw a line with child abuse/neglect and when the State should be able to move in, I find a broad gray area that makes it very difficult.

  37. Ray
    May 21, 2009 at 11:57 am

    #30 – Kari, why was that directed to me? I think you mistyped my name instead of someone else’s.

  38. May 21, 2009 at 12:03 pm

    I find it interesting that some draw the line at the abuse/neglect of a child, but not the killing of a child, which is exactly what this woman is doing indirectly. There’s not even a question as to if this boy will die without treatment, but when. And if her actions are what leads to his death, then I’d say she may be guilty of manslaughter (I’m not a lawyer though, so I don’t know).

  39. Kari
    May 21, 2009 at 12:49 pm

    Ray, I simply quoted you from comment #1, but forgot to close out the italics. And my wording made it seem like it was a continuation of a conversation we were having, when I really just meant to draw attention to my previous comment.

    The purpose of quoting you was to clarify that the state of Minnesota is not dictating what type of medical treatment Daniel receive, just that he receive medical treatment. Naturopathy and “alternative” treatments are not medical treatment, and the state of Minnesota recognizes this fact and specifically excludes them, by statute, of being considered medical treatments.

  40. brjones
    May 21, 2009 at 12:57 pm

    Frankly I am baffled by the number of people who seem to feel that parents have the absolute right to do whatever they want with and to their children in the name of religion, and that the state is somehow the evil interloper in this situation. And I think the continual evocation of how this situation is similar to satan’s plan is unbelievably fallacious reasoning. By that rationale, any limitations placed on a parent are evil and inappropriate. I asked the question before to those who seem to side with the parents on this issue, and I’d really like an answer. If you think this is an overstepping of the state’s bounds, then I am very curious to know in what circumstances you would support the state intervening in the interests of a child. It seems that some people feel that if the parents feel that this is in the child’s best spiritual interest, then this should be the end of the discussion. Well what if a parent is genuinely, 100% convinced that the only way their child can be saved is to sacrifice their life? Would anyone here argue that the state should sit by and allow that? Ultimately I fail to see how this is different. The child will live with chemo and he will die without it. That is virtually certain. So the argument here is not about differing opinions on the most effective treatment. The issue is whether a parent should be allowed to let their child die for religious reasons. I don’t see how this is one iota different than whether a parent should be allowed to kill their child for religious reasons (although I understand the acts are different). I think the only consistent position for some of the posters here is that when it comes to religion, the state has no right to ever supersede a parent’s judgment. I find that staggering. If there is some nuance I’m missing, again I would be interested in hearing it.

  41. Ray
    May 21, 2009 at 1:14 pm

    Got it. Thanks, Kari.

    Fwiw, I agree with brjones’ last comment. Until the child is old enough to be considered legally responsible for his decisions, the state has a compelling reason to intervene and mandate treatment when it is almost a certainty that he will die without it and live with it. I think we are obsessed unhealthily with prolonging life at all costs in this country, but this is radically different than allowing a terminally ill patient to dictate that they be taken off life-prolonging medication and treatment and be allowed to die. This particular case actually is a no-brainer to me, my facetious initial comment notwithstanding.

  42. MH
    May 21, 2009 at 1:15 pm

    One thing I want to point out is the assumption that alternative treatments won’t work. While I am sympathetic to the state, I believe in traditional medicine, and I agree with the court’s conclusion, it is important to remember that doctors are not omniscient, and can be wrong.

    In the Parker Jensen case, the parents were told repeatedly that they were killing their child by refusing traditional chemotherapy. Well, Parker is a healthy 18 year old, so it appears the doctors were wrong in their analysis. I think that parents should have the right to make decisions about medical treatment for their child, and I’m really uncomfortable with a statue essentially outlawing “alternative medicine.”

    If the evidence shows the alternative medicine is not working, then I am for the state stepping in, but I have a real hard time saying the treatment should be forced against the parents wishes, nor do I believe a parent should be prosecuted for following their conscience.

  43. brjones
    May 21, 2009 at 1:19 pm

    This is not a knock on you, Clark, but I find it highly ironic that mcconkie would be invoked in a discussion about free agency, considering the well known story by his son of his dad’s definition of free agency being (to paraphrase) “you can either come to church voluntarily or you can be dragged.”

  44. May 21, 2009 at 1:29 pm

    I agree with brjones.

    MH also makes a good point about alternative medicine. I don’t mean to knock alternative medicine. In some cases, I think it can be very beneficial and, sometimes, a patient’s last hope. However, since this particular case appears to have a prescribed cure that is almost certain (around 90%), then it seems absurd to not proceed with the treatment.

  45. brjones
    May 21, 2009 at 1:32 pm

    Not only is the cure virtually certain, let’s not forget that the diagnosis was made in January, and the parents have had almost 5 months to treat the child naturally. Only after a subsequent x-ray showed the tumor growing and spreading did the court step in. When the original diagnosis was made, no one made any effort to force the parents to adopt a certain treatment.

  46. Dan
    May 21, 2009 at 1:51 pm

    brjones,

    #40,

    then I am very curious to know in what circumstances you would support the state intervening in the interests of a child.

    Child abuse.

    Look, if you are incapable of convincing this mother and her 13 year old son of the benefits of this treatment, then the sin of the death of the son be upon the son and the mother. It’s their choice. But I think I understand better where conservative Mormons (and other religious conservatives) come from with their stance on how the state should not allow abortion.

    There’s gotta be a point where state intervention should be prohibited. I just think back to my father abusing me as a child. Would it have helped me to have the state intervene? (they never did) I don’t think so. I may have felt he deserved prison back then, but now with time past, I don’t feel that way, and him being charged with a crime would have had a serious negative effect upon our healing relationship.

    Now, I really don’t know the details of this case beyond the passing account in the news, and I really don’t care to know the details. I’m indifferent. If the kid dies because he chose not to accept modern medicine, then I say that’s his choice. I feel more troubled if the state forced the kid out of his parents’ control. Essentially, if the state did this, they would sever that relationship for him, causing a very negative effect on that family. That just troubles me greatly. Sure, the kid might survive, but look at the damage done to that family!

    Let’s look back at Elian Gonzales. Remember him? yeah, the guy that gave George W. Freaking Bush the White House! I sided with those who believed that Elian should have stayed with his next closest kin, his father. That’s what the father is for. He is family. Social, religious conservatives (ironically the guys who supposedly defend “families”) felt it was better Elian was here in America away from his closest family than with his natural father. I never understood how a group of people who claimed they support families would support the separation of a child from his father solely because that father came from a country we didn’t like!

    So essentially, my argument, and the side I align myself with, is that the family is the greater unit than the state. And if the family decides it is in their best interest that the kid not get chemo, then so be it.

  47. Kari
    May 21, 2009 at 1:57 pm

    MH,

    There are a number of differences between Parker Jensen and Daniel Hauser. Daniel has seen three separate oncologists and had multiple x-rays, all confirming that he has cancer. His cancer initially responded to chemo, and is now enlarging since chemo hasn’t been continued. The Jensen’s disputed the diagnosis of cancer all along, and I’m not familiar enough with Parker’s case to say how many specialists other than the first who made the diagnosis. But I know that his parent’s claim that he never received an independent second opinion. There’s also good indication that Parker’s initial physician was more interested in getting Parker into a clinical trial, rather than confirming the diagnosis and ensuring that he was treated appropriately.

    So which is more likely, that Parker Jensen didn’t have cancer or that he did and naturopathy cured him? There is no doubt in my mind that the more likely explanation is the first. Parker Jensen was treated with therapies that have never been proven to put cancer into remission. And there’s the rub, “natural” and “alternative” methods of treatment do not stand up to scientific scrutiny, and while anecdotes report people who have been “cured” by these methods, there is no proof.

    The state of Minnesota doesn’t tell families that they can’t seek alternative therapies, what it says is that those therapies are not recognized as “necessary medical treatment.” If you believe there is some sound scientific evidence that alternative therapies are more effective than placebo, I’d love to see them.

  48. Kari
    May 21, 2009 at 2:02 pm

    Unlike TheFaithfulDissident, I do mean to openly knock “alternative” therapies. As I stated above, if anyone can show that “alternative” therapy works better than placebo, particularly against cancer but I’m open to other diseases as well, I’m happy to listen and read the study, but anecdotes don’t constitute proof.

  49. MH
    May 21, 2009 at 3:15 pm

    I don’t want to become a defender of alternative therapies, because, like Kari, I don’t believe evidence is strongly in favor of alternative therapies. My point is that a parent should have the right to decide how their child is treated. Now, if the parent is making a really stupid decision (as it appears to be in the MN case), then I think the state should step in. In the UT case, it seems the state jumped in too soon, and I’m glad the Jensen’s won their case, and that the child is healthy. I know the UT case isn’t identical–I said it was similar. Every case should be decided on its merits.

  50. brjones
    May 21, 2009 at 4:11 pm

    Clearly there is a fundamental difference of opinion among some of the posters. While I respect your opinion, Dan, I will rest easier tonight knowing that in this country, if someone abuses their child or means to let them rot to death when life-saving medical treatments are available, the government will break their door down, tear their child from their negligent arms and throw them in prison with the other criminals. I can at least understand this kid’s parents’ actions, since they are pretty clearly deluded. It bothers me much more that seemingly reasonable people on the outside are so willing to in so many words say “too bad about that kid, but if it’s their rights today it could be my rights tomorrow.” This child is not a test case – he’s a human being who has no concept of the politics that are being played with his life. I, for one, am glad that the state will act first to make sure the child is safe. His rights, including his right to life, are INFINITELY more important than those of his parents. At this point the only right his mother should be concerned about is the right to remain silent.

  51. MH
    May 21, 2009 at 6:03 pm

    brjones,

    I did a post on euthanasia a while back. I am curious if you believe anyone has the right to choose to end their own life if they are terminally ill. What are your reasons for or against euthanasia?

  52. Brjones
    May 21, 2009 at 6:52 pm

    It’s an interesting issue, and one I haven’t necessarily spent a lot of time considering. My first inclination is that I don’t really have a huge problem with it. I can say, however, that my big problem with the present issue is not that someone is going to die as the result of a conscious choice. My problem is that it’s an adult choosing to end the life of a minor child, and I believe unequivocally that the state has the right and a duty to step in and act in that situation. A person acting to end their own life or the life of an adult family member who has made an informed and reasoned choice to do so is a different ballgame altogether. For that matter, if the child were of sound mind and it could be demonstrated that the child understood the situation sufficiently and made a reasoned choice to end their life and communicated that to his or her parents, that is also a different situation. That is clearly not the case here. I really feel that in this instance the parents are making a choice to effectively end their child’s life, and the child is incapable of understanding what is going on. That is unacceptable.

    I also find it interesting (genuinely, this is not a cheap shot) that one of conservatives’ big rallying cries regarding the many forms of abortion is the “devaluing of human life,” but in an instance where they see parental, and more particularly, religious rights impinged, they’re suddenly no friend to the person whose life is endangered. Obviously I think it’s a hypocritical stance, but even more than that, I honestly think it’s an interesting topic – the tension between the passionate protection of life, sometimes at all costs, on one hand, and the position taht it’s too bad that a child has to die, but parental rights are untouchable. Any thoughts?

  53. Dan
    May 21, 2009 at 7:00 pm

    brjones,

    I can at least understand this kid’s parents’ actions, since they are pretty clearly deluded. It bothers me much more that seemingly reasonable people on the outside are so willing to in so many words say “too bad about that kid, but if it’s their rights today it could be my rights tomorrow.”

    That’s not my argument at all. I don’t feel in any way threatened by the state (the “slippery slope argument”). I just side with the parents having the priority. But I’m really not impassioned on this particular issue, like you are brjones. It doesn’t touch me like other issues do. I really don’t care if the parents win out or the state wins out. I just lean toward the parents over the state.

  54. Ray
    May 21, 2009 at 7:08 pm

    #52 – brjones brings up a fascinating aspect of this issue with the juxtaposition of abortion and this case – dealing specifically with the sanctity of life and the religious conservative response. It is odd that many who oppose abortion unequivocally and universally (generally, not here on this blog, necessarily) are some of the ones supporting the parents in this case.

  55. MH
    May 21, 2009 at 8:14 pm

    I guess one of the biggest problems in euthanasia is when a person does not make a living will. Therefore, a mentally damaged adult is really no different than a 13 year old. In the Terry Shiavo case, the husband chose to end her life, while the parents wanted to keep her alive. We know how ugly that battle was, and the husband was declared the ultimate judge, and Terry died against her parents wishes.

    Personally, if I was in that situation, I would not want to be kept alive for 10 years (or more) in that state. Euthanasia has a similar thought process as this case: who is the ultimate judge over what is best for a person who can’t decide for themselves? Obviously, people are going to come down on different sides on this issue.

  56. brjones
    May 21, 2009 at 10:11 pm

    While I admit there are similarities, situations such as the Shiavo case are vastly different from those such as the present case. The main difference is that in the case of a brain-dead adult, you’re talking about whether to prolong their life as a brain-dead person. That is a far different consideration than whether to prolong the life of someone who, by all indications, has a long and fruitful and normal life ahead of them. I think the state’s interest in cases such as Terry Shiavo is much more general, and more of a “sanctity of life” consideration, whereas in a case such as the Minnesota one, the issue is actually the life of the individual involved. Obviously there was some debate about whether Terry Shiavo could actually feel pain or had any awareness, but the point remains. In that sense, deciding for an adult who is in a coma, brain dead or otherwise unable to make that determination for him or herself is completely different from saving a child’s life from cancer. As I’ve said before, in the latter instance, I believe the state is right to take swift and stern action to save the child’s life. Another difference in the Shiavo case and the present case is that time was not really a critical factor in the Shiavo case. She had been brain dead for years and her condition was not going to change while the courts and the families battled it out. In the present case, there is literally no time to waste. This also cuts in favor of the action taken by the court.

  57. May 21, 2009 at 11:17 pm

    Brjones,

    You are mischaracterizing Shiavo. She was not at all brain dead, but could smile, and appeared to laugh. Her parents even claimed that at times she appeared to recognize them, though medical experts claimed this was involuntary movement. She was not in a coma, but had a terrible brain injury, and couldn’t feed or clothe herself, or get out of bed. Nonetheless, I agree the case is different, but I’m trying to illustrate the difficulty in who gets to properly decide taking or refusing medical treatments.

    But I encourage you to check the link 51 above to read about a French woman Chantal Sébire with a tumor growing in her face. She asked to be allowed to take a drug for assisted suicide. Now the cancer was going to very slowly kill her anyway, yet the courts refused to allow her to take a suicide drug. She could have lived for years probably, though she was horribly disfigured, lost her eyesight, taste and smell, and many other cruel things. She eventually moved to another European country to die in dignity. Are you saying the French court was correct in denying a seemingly competent woman her choice of death? Would you like the court to take away your choice, or your decision for your teenager? I also ask you to review Maxine Poris decision.

  58. brjones
    May 21, 2009 at 11:41 pm

    Thanks for the clarifications, Mormon Heretic. I don’t think I indicated that I was opposed to euthanasia, in fact I think I said I tended not to have a problem with it. Your distinction of the Shiavo case is valid, but my main point still remains, which is, when dealing with a minor child, the considerations are much, much different. Additionally, whether Terry Shiavo was brain dead or not, no one was talking about snuffing out a full, normal life. Not that her life is less valuable, but it obviously changes the urgency of the debate to some degree. I’m glad Ms. Sebire was able to find a state that allowed her to die with dignity.

    Let me just clarify that I’m not favoring the rights of the state over the rights of parents. I’m favoring the rights of a minor child over the rights of that child’s parents. When a parent is putting a child in danger, the only person who can come to that child’s aid and fight for his or her rights is often the state. So in this case, I feel like the state is fighting for that Minnesota boy’s rights, even though he doesn’t realize it. I think it is appropriate. I don’t have similar feelings about other right to die issues. And for the record, even aside from the disgusting politics involved, I STRONGLY supported the right of Shiavo’s husband to remove her feeding tube. Obviously the issue of whether her husband or her family should have been calling the shots is another matter, but the point is, I opposed the government getting involved to keep her alive on the basis of “sanctity of life.”

  59. MH
    May 21, 2009 at 11:52 pm

    “Let me just clarify that I’m not favoring the rights of the state over the rights of parents. I’m favoring the rights of a minor child over the rights of that child’s parents.

    Fair enough. I understand your distinction, but I hope you can see that other people see the former position as well.

  60. brjones
    May 22, 2009 at 12:02 am

    I’m sure you’re right, although honestly I think we’d be hard pressed to find anyone who openly accepted that that is what they were doing. What I mean is, I think most people who favor more state intervention as opposed to less, probably view the state as a proxy for some unrepresented or underrepresented person or group. I don’t think many people would see themselves as favoring the expansion of state power for the state’s sake. I realize that I’m undercutting my own argument here, a little bit, and I’m ok with that. I understand that every time you allow the state to trump the rights of the individual, you are chipping away a little more of that bundle of rights that we possess in a free society. I realize that there are many people who basically feel that this should never happen in any society, regardless of the circumstances. I obviously don’t feel that way. I’m not one who is a big proponent of the state sticking its nose in anywhere there is a group or person who can’t do for themselves. However, as I’ve stated, I think when a minor child’s parents cease to act in his or her best interest, who else is there but the state that can act to protect that child? I have no problem taking the position that the state should not hesitate to act in that situation.

  61. Kari
    May 22, 2009 at 11:14 am

    MH and brjones,

    Sorry for the threadjack, but as a neurologist I can’t help but to correct some misconceptions. You both mischaracterize Schiavo. Brain death is a way to determine death that is equivalent to determining death by the stopping of the heart. Terry Schiavo was certainly not dead. She was in a state that is labeled “persistent vegetative state” — essentially a persistent coma — and means that she has no activity that can be attributed to functioning of the cerebral cortex, the location where all higher functioning of the human mind occurs. Without a functioning cerebral cortex there is no conscious awareness. There is reflexic activity that occurs from the deeper, and evolutionary older, area of the brain called the brainstem. Despite the family’s optimistic interpretations of her reflex activity there never really was any doubt as to her condition; every neurologist who examined Terry Schiavo agreed that she was in a PVS.

    Now, back to the regularly scheduled program.

  62. Dexter
    May 22, 2009 at 1:37 pm

    I cannot believe the things I am reading in these comments.

    Does anyone here feel that the state should not intervene if a parent is known to be physically beating their child to such an extent that the child’s chance of dying in the next few years is 90% or more?

    Anyone?

    Then how can you feel that the state should not step in when the parent’s avoidance of medical treatment means that the child’s chance of dying in the next few years is 90% or more?

    I don’t care about their religion, I don’t care about the parent’s rights, I don’t care about the potential power that state could gain from this instance.

    If you want the state to step in and protect children from incest, abuse, murder, etc., which, we all do, right?

    Then how can you say the state should not step in here?

    This is not even a debatable issue. Unless you want to turn a blind eye to incest and child abuse as well, how can you say the parents’ deserve to decide?

  63. Dan
    May 22, 2009 at 10:23 pm
  64. MH
    May 23, 2009 at 7:04 am

    Dexter, where does it say the child has a 90% chance of death? I saw a 90% chance of cure, but it sounds to me like you’re misquoting statistics.

  65. Kari
    May 23, 2009 at 7:35 am

    MH,

    I believe the point Dexter was making is that if parents were abusing a child so terribly that he was likely to die in the next few years, wouldn’t the state have an obligation to step in and protect the child? Parents don’t really have unfettered rights to treat their children in any manner they please. He wasn’t necessarily using statistics from Daniel Hauser’s situation.

    Daniel’s statistics: with chemotherapy and radiation therapy there is a 90% 5-year survival rate (which is the standard measurement for remission/cure in cancer therapy). Without this treatment his 5-year survival rate is <5%, and very likely nil, seeing that his tumor is growing significantly and is now already beginning to displace his trachea.

  66. May 23, 2009 at 11:00 am

    Kari,

    Since you stated you’re a neurologist, I do have training in statistics. There’s a saying, “There’s 3 types people who lie: liars, damn liars, and statisticians.” (I guess that’s kind of a like a lawyer telling a joke about lawyers.) I’m not disputing facts here, but I am saying that 90% chance of cure, and 90% chance of dying are not the same thing, despite their sounding so similar in nature. We all have 100% chance of dying–but predicting when death will occur is a little more dicey. I would expect your training in neurology would give you experience with that. I’m sure you’ve been right some times, and wrong others.

    My epidemiology teacher often said that 5-year survival rates aren’t very useful, because they fail to take into account severity of the disease, when the diagnosis was performed, etc. I’m not saying 5-year survival rates are worthless, but there are some hidden biases in the numbers that don’t necessarily tell the whole picture.

    As an example of mis-use of statistics, people often misquote statistics which show research hospitals have a higher death rate than rural hospitals. The problem is called selection bias. Research hospitals often treat sicker people, and get the patients that rural hospitals send to them. The result is a seemingly rosy picture of rural hospital death rates, because they don’t count the really sick people that get life-flighted to research hospitals and die there, which raises the death rates for research hospitals, and lowers it for the rural hospital.

    I also don’t want to paint myself as against the state of MN. I do feel that the state acted appropriately in this case. However, I do want to state that in the Utah case, many dire statistics were quoted as well for Parker Jensen. Now perhaps he didn’t really have cancer (was misdiagnosed), and that is the real reason for his survival. Nonetheless, the doctor who believed the diagnosis, was bound and determined to treat Parker against his will.

    I believe that medical professionals are often quite arrogant in assuming they know what’s best. When my sister was diagnosed with a brain tumor, she didn’t go with state of the art care offered at Huntsman Cancer center, because she didn’t feel confidence in the doctor there. Instead she tried a more traditional treatment at a closer doctor whom she had confidence in (radiation and chemo simultaneously). Some will question her decision–she died 2 years later, but the cancer was so aggressive, she may well have died at Huntsman too.

    In a strange twist of fate, my sister’s husband remarried, and his new wife was diagnosed with breast cancer. Once again, she rejected Huntsman Cancer in favor of the same doctor as my sister. The new wife has been cancer free for 5 years. I’m sure the Huntsman people were quite shocked that these 2 women did not follow their expert advice and reputation.

    What I’m saying is that people should exercise more control over their medical decisions. If it can be clearly demonstrated that their decisions are harming themselves (as it appears in the MN case), then only under these extreme circumstances should the state over-rule the patient’s wishes. I think far too many people feel that “doctor knows best”, and fail to educate themselves. The MN family seems to be the other extreme, relying on a spurious treatment instead of competent medical care. The Jensen family seems to have properly exerted their rights against an undue pressure from a doctor who may have misdiagnosed the disease.

    So, I applaud MN in this case, but I do believe that every case should be decided on its own individual circumstances. This case bears some important similarities (as well as differences) with the Parker Jensen case. I also want to applaud the Jensens for standing up to the state of Utah for their rights as well. They were threatened with imprisonment, yet fought the case on merits and won.

  67. Kari
    May 23, 2009 at 2:36 pm

    MH,

    Not quite sure why that was directed to me. I was just pointing out that I thought you assumed Dexter’s comment was meant to use the statistics from the Hauser case, when I wasn’t sure that was the case, and thought he was using a percentage to make a point.

    I would expect your training in neurology would give you experience with that. I’m sure you’ve been right some times, and wrong others.

    I never predict when someone is going to die, so I’m never wrong. 🙂 I agree with you regarding statistics and the fact that statistics are often misunderstood and misrepresented. My training in statistics was excellent and I feel I have good understanding of them, but freely admit I am not a statistician.

    I always explain the statistics to my patients like this (using the stats from the Daniel Hauser case for example):

    “The best knowledge we have tell us that for every 100 people in your situation who chose not to pursue treatment, 5 will still be alive in five years, and 95 will have died. For 100 people who chose to be treated with chemotherapy and radiation therapy, 90 of them will be disease free in five years, which we consider a cure.” (Of note, I don’t know the stats for Hodgkins lymphoma for the 10% of treated patients who aren’t in remission at five years, they could all be dead or could have partial response to treatment. For my patients I would know those stats.) Of course this is part of a detailed counseling session.

    And not to belittle your family experience, but you know that anecdotes are meaningless, in statistics and medicine. I’m pleased that your sister beat the odds.

    And I couldn’t agree more that everyone should be involved and active in participating in all aspects of their medical care. Find a doctor you trust, and get second and third opinions. You’re not going to like or trust every doctor you see, just like I don’t like or trust every single patient. It’s part of human nature. The downside though is that often the decision of trust is based more on personality than competence, which is why charlatanism is alive and well.

  68. May 23, 2009 at 7:23 pm

    While I understand that my story is anecdotal, so is Parker Jensen’s and the Daniel Hauser’s. In medicine, we are dealing with individuals, not groups of people. We never know how any individual case will turn out, and when we refer to statistics, we provide odds on how most people will react. For people who disagree with a medical procedure, they always hope they’re the exception (the 5 out of 100 that Kari mentioned above.)

    If society operated only in best chances, then gambling would be outlawed. We should all understand when we walk into a casino, that the odds really are stacked against us. But we always think we are the ones who will beat the odds, and sometimes we do, but overall, the house always comes out ahead. Some people would rather gamble on a short, quality life, than a long, sickly life filled with unintended side effects.

    I can appreciate Dexter’s comments comparing this to child abuse, but I do not believe he appreciates the Hausers or Jensens position. Not everyone believes that life should be saved “at all costs.” Some people look to quality of life issues. The adage that “sometimes the cure is worse than the disease” is quite appropriate in cases like this. There are so many people who die despite all of medical efforts to save them. They endure pain, and discomfort in the hopes of a longer life, to no avail.

    In the Jensens case, one of their biggest concerns regarding chemo was that it would stunt Parker’s growth, and had a high chance of leaving him sterile. These are serious side effects. While Dexter may shrug it off as worth the risk, not everyone feels that way. Some would rather die than live a life full of serious side effects, pain, discomfort, and in Parker’s case even ridicule for his stunted growth. Some would rather live a quality of life with a tumor and die young, than live a miserable life of throwing up, nausea, depression, and isolation, even for a relatively short time of a year, or however long the treatment takes.

    To use another example, I think that some of us would prefer to die, rather than live a life as a quadriplegic. Living like that “at all costs”, does not appeal to some. Now there are those who can still live a wonderful life like this–Stephen Hawking comes to mind as someone living with quite a disability, but I suspect few people have the spirit that he does. If a court forced you to live as a quadriplegic against your desires to die, would you find fault with the court?

    Now, I know this is an extreme example, but I’m just trying to illustrate the Hausers and Jensens perspective. Perhaps Dexter doesn’t care to understand their perspective, and if so, then I guess I’m wasting my time trying to explain it.

  69. Cicero
    May 23, 2009 at 11:00 pm

    On the one hand I don’t agree with the parents position.

    But on the other I am hesitant about the comparison of refusing medical care to child abuse. When a person whose religion opposes blood transfusions denys that care to his children, is that abusive?

    Isn’t there a difference between an act of commission- ie beating a child, and an act of omission?

    But then we consider denial of food to be abusive… but is medical care really the same as food and water? After all, there have been many times when doctors have been proven wrong and the established medical care was useless or even harmful. (Blood letting and leeches anyone?). Why are we so confident that we are less likely to error than our predecessors?

    Also, using the coercive power of the state… that’s a big step.

    I’m not really comfortable either way on the subject, and I find myself more disturbed by those who seem so confident that using state power is justified. You see, I’ve had people try to coerce me to take medical treatment that I didn’t want. They felt they had the right to use coercion because it was “for my own good”, and they simply didn’t care when I pointed out that only one of the many doctors I had seen gave that treatment advice, nor did they listen when I pointed out I had tried his proposed treatment and it had made me worse, nor did they listen when I pointed out that I had less than 1/4 of the symptoms of the disease he diagnosed me with and several other symptoms that were not part of that disease.

    I know the media is reporting this as clear cut… but are we really sure they understand the situation fully? Don’t his parents show themselves to be loving and caring parents who want what is best for their child? Who are we to override their best judgment?

    If we do have such a right- where do we draw the line? Can we force parents to send their kids to public school instead of home schooling them? If not, why not?

  70. Dan
    May 26, 2009 at 5:23 pm

    Looks like the parents came around.

    It’s nice to see a good conclusion to all this. It would have been a bad choice for the government to sever the connections between the members of the family. And of course it would have been a bad choice for the son to die.

  71. Armageddon Aftermath
    October 3, 2014 at 6:20 am

    What the #?*! is this the knights of the #?*!ing round table? get a life people

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