In the city of New Ulm, Minnesota, a situation has developed that raises all sorts of questions regarding medical ethics. Newspaper articles often have a brief cyberlife, so I'll offer an extended summary of the salient features from the Mpls-St.Paul Star Tribune:
Daniel Hauser has what doctors consider one of the most curable types of cancer, Hodgkin's lymphoma.
But the 13-year-old from Sleepy Eye, Minn. and his parents don't want him to have chemotherapy and radiation, the standard treatments. For the past three months, they have ignored the advice of his cancer specialists and turned to natural therapies, such as herbs and vitamins, instead.
Now they are going to court to defend their decision.
James Olson, the Brown County attorney, has filed a petition accusing Daniel's parents, Colleen and Anthony Hauser, of child neglect and endangerment, and he has asked a judge in New Ulm to order the boy into treatment.
The case, which goes to trial this morning, has quickly turned into a cause celebre in the world of alternative medicine...
Daniel, one of eight children, has asserted that treatment would violate his religious beliefs. The teenager filed an affidavit saying that he is a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago (though they don't claim to be Indians).
"I am opposed to chemotherapy because it is self-destructive and poisonous," he told the court. "I want to live a virtuous life, in the eyes of my creator, not just a long life."
... Danny, as he is known, was first found to have cancer in late January, and his doctors recommended six rounds of chemotherapy and radiation, according to court papers. The disease -- a cancer of the immune cells -- has a 95 percent survival rate for his age group with treatment, according to the Leukemia and Lymphoma Society.
But after one round of chemotherapy, Daniel became so sick that his parents refused to send him for a second treatment. They switched him to an alternative regime of complementary medicine, including dietary changes and "ionized water," Johnson said.
The case is interesting because it's not the conventional "right-to-die-from-a-terminal-illness" situation; this disease is eminently treatable - not just to remission, but to cure. The boy, while not of "legal" age, is mature enough to make some informed judgments, and is backed by his parents. Their principles, interestingly, did not embrance alternative medicine at the onset (he had one round of chemo); the opposition apparently arose because the chemo had toxic side effects.
My personal view is that there is no way that chemotherapy should be "forced" by court order upon this boy. I would hope that the remainder of his life would be used for a sympathetic but brutally honest documentary film that could be used in the future to educate others about the course his illness will undoubtedly follow.
There's more information re the medical, legal, and ethical aspects at the link, as well as a long and not surprisingly acrimonious comment thread.
Addendum: There's further discussion with a different viewpoint (and a long comment thread) of this case at Pharyngula, a blog I check weekly but hadn't seen yet. Thanks, Bill.
Addendum May 15: A district judge has ruled the boy must undergo treatment with chemotherapy/radiotherapy if the lesion is still deemed curable on repeat evaluation. Curiously, there is also a comment that this 13-year-old is "unable to read."
Addendum May 19: A followup CXR showed that the Hodgkins nodes had regrown to their original size since cessation of chemo. The boy and his mother did not present themselves to an oncologist by the court-mandated date; the location of both is unknown. An arrest warrant has been issued.
Addendum May 20: Excellent Star-Tribune article here about the scam artist who misrepresents Native American culture as a "church" and deludes people, including young Daniel's parents.
Very disappointed in your position on this. A good analysis can be found here: http://scienceblogs.com/pharyngula/2009/05/death_by_religious_ignorance.php
ReplyDeleteI'm not sure I understand what your stance really says about ionized water. http://www.lifeionizers.com/?utm_source=A&utm_medium=B&utm_campaign=C
ReplyDeleteI would consider the effect of consuming ionized water to be equivalent to breathing air. Or hopping on one foot.
ReplyDeleteHis Hodgkins may be temporarily quiescent, but will be relentlessly progressive. If he and his family continue to pursue only alternative, "natural" interventions, then he will die from the Hodgkins or from a complication related to it.
Back when I was undergoing treatment for Hodgkin's, I happened upon a blog by a man from Canada who had begun "traditional" therapy, found it difficult, and with the urging of his new wife, embarked on an alternative course of treatment. His blog detailed the various foods, drinks, and detoxification treatments that he used under the guidance of a "practitioner". The posts move from optimistic, to questioning, to doubtful, to anger with the "practitioner" who did no monitoring of his condition to see if the alternative therapies were actually working. Eventually, he returned to his traditional physician to seek treatment, but was told it was too late. He was poignantly honest in his final days. He did not blame his wife. He seemed to have acquired very clear thinking as to how to evaluate a course of treatment, clear thinking just arrived a year too late.
ReplyDeleteSadly, his blog is no longer available. I wish I had saved copies of some of the posts.
I understand looking at all options. There's just something about a treatment that is successful 95% of the time that made it really difficult for me to discount
There also used to be a blog called "Hodgepodge" that had some remarkably insightful views regarding the diagnosis and treatment of Hodgkins. It's too bad that it's not publicly available.
ReplyDeleteI agree with you - it is his right to refuse treatment. Would people still call him and his parents idiots if he'd left out the religion/alt treatment bit and simply said that he didn't want to have it because it was painful?
ReplyDeleteOn a related note, I sometimes get yelled at for being a scientist who doesn't want to force science on others. Yes, it's what I want to be doing, but you certainly don't have to believe in it. And honestly, investigating alternative treatments (if it is a decision you make for yourself rather than one that is thrust upon you) is not such a bad thing - if we don't try them out, we'll never know if they work or not, or under what circumstances they might work.
I really hope after thinking further about this, you will change your mind.
ReplyDeleteParents should not have the right to kill their children. I would argue that this "right to not be murdered" is your most fundamental one in this world.
Shame on the parents for what goes far beyond neglect, and shame on anyone who supports this taking of an innocent human life.
I'm hopeful you'll retract your approval, Minnesotastan. You seem like a pretty reasonable guy.
@ Bill Hunt. I am a reasonable guy, and I'll offer you my reasoned response. I don't want to dismiss your concern for this young man out of hand; you clearly don't want him to be a case of "death by religion" and you sincerely would prefer that he undergo appropriate medical rx even though he and his parents refuse.
ReplyDeleteWhat I believe you fail to comprehend are the immense difficulties attendant on administering medical care to those who are opposed to it. I have a modicum of experience in this regard, mostly with regard to prisoners who refused to accept chemotherapy for their (often drug-resistant) tuberculosis. They would be hospitalized on court order and the treatment given by "force." For a recalcitrant prisoner this meant being shackled to the bed with handcuffs. I have seen one such prisoner hanging out the window of Parkland with the foot still chained to the bed.
So let me challenge you with some very practical questions. How would you bring Daniel in, assuming he continues to refuse and his family supports him? Would you send the sheriff to his house, and if so, what force would you authorize to be exerted against the family? If the family are arrested in the course of apprehending Daniel, who would take care of the other seven children?
Now he's in the hospital. He'll need a deep line for the chemo. You can authorize sedation for the procedure, but to prevent him pulling the line and getting an air embolus, will you approve him being shackeled with four-point restraints. Effective, but cumbersome when he begins vomiting from the chemo.
What will you do when the chemo drops his white count to 200 and he gets pseudomonas bacteremia and develops septic shock? If he dies as a result of the therapy (sooner than he would have died without rx), what defense will you offer in court?
I do understand that you offer your opinion that his death must be prevented because you value his life highly. Presumably your religion or ethos convinces you that his life cannot be lost by neglect or ignorance.
But please understand that Daniel and his family take their positions based on a different religion, and there is no a priori reason why your religion trumps his. They are willing to accept his death with dignity rather than undergo the rigors of chemo for a longer life. Can we impose on him a different worldview that values prolongation of life as the ultimate good?
It's a complex question. I don't offer these arguments to convince you of my point of view or Daniel's, because I suspect your religious convictions are strong and not amenable to change, but I hope you might attempt to see things from a different point of view.
I don't see a difference between this case, and one where a child is sitting on the railroad tracks as the train comes and the parents refuse to move him. If you see a difference, please illuminate. If you don't please explain how this can not be construed as child abuse at minimum and more likely murder to any moral person.
ReplyDeleteYour position (as called out in your last post) is "hey, even if I try, can you imagine how hard it will be for me to pull that kid off the tracks? and who will do the pulling?" I'm happy to agree there are practical implications to enforcing a solution, but that's not germane to my concern: I'm disturbed by your stance, that the parents actions are acceptable, and that this is an "interesting case", and that we should watch and make a case study of the results.
I'm just very surprised about this. I like to think that if you see a kid on the tracks tomorrow, you'll take a few minutes to pull him off, not comment that it's an "interesting case" and move on with your daily routine.
An aside: I'm an atheist, and to me, this whole thing brings to light just how rotten religion is.
I think they are crazy! I don't care what religion you are, you should want the best for your children and what would be best for him is NOT to have cancer anymore! I know a lady who had cancer and while she absolutely hated the chemo part, she is still so happy to be cancer free! And, usually it's the "cult-like" religions that do this crap to their children, not mainstream ones!
ReplyDeleteLet me first offer my sincere apologies for my incorrect assumption that your concern for the child arose from religious rather than moral considerations. That was an unwarranted assumption on my part.
ReplyDeleteHaving said that, I still can't agree that the courts and law enforcement and the medical community should subject this young man to medical rx against his will. We'll just have to agree to disagree on this point. If it were a matter of public health, communicable disease, etc., the arguments would be different.
I'll tell you what I think WILL happen. I would expect the boy to become progessively ill, and when the disease symptoms become worse than what he remembers the rx side effects to have been, he will voluntarily present himself for treatment (which might or might not be efficacious at that time depending on the extent of his solid organ involvement).
I think if this entire process were documented objectively by an independent filmmaker or journalist, the resultant case study might serve to prevent dozens or hundreds of similar deaths in the future by other believers in natural therapy. From that admittedly cynical viewpoint, his death might be used to serve a higher purpose.
Hi, I'm very interested in this story too. Please keep on blogging on it and keep us up to date if you can, as i have a very short memory span.
ReplyDeleteThank you for your very good blog!
Cristiano
A followup article on the first court appearance and arguments for both sides (all anticipated in the comment thread) is here:
ReplyDeletehttp://www.startribune.com/lifestyle/health/44594367.html
I'll admit that I don't put too much value in a single human life, but I'm not indifferent to suffering.
ReplyDeleteI think that this person has a right to make their own poor choices.
I only wish that his imminent death would call attention to the dangers of natural and alternative medicine. These con have hurt so many people. It's merely sad when people want to waste their resources supplementing conventional medicine with snake oils, but for a practicioner of alternative medicine to attempt to discourage conventional medicine in any way should be criminal.