I’ve written before about clinical trials as one place where “the rubber hits the road,” so to speak regarding the interface between science-based medicine and actual medical practice. Another critical place where an equal amount of rubber hits an equal amount of road is how the medical system and the law deal with the medical care of minors. In the vast majority of cases, parents take their children to physicians ostensibly practicing science-based medicine and, more or less, follow their advice. One of the more common areas where there is resistance to science-based medicine is, of course, the issue of vaccination, which I and other bloggers at SBM have written about extensively. Another issue, which has not yet been touched upon on this blog, is what to do about parents who refuse chemotherapy for their children with curable childhood cancers or children who refuse chemotherapy whose parents either agree with them or are unwilling to do the hard work of convincing their children that they must undergo therapy. Most often, the reason cited by such “chemotherapy refuseniks” is either religion or a desire to undergo “alternative” therapy rather than conventional therapy. One such case, a particularly high profile one, has been in the news over the last couple of weeks. In this post, I plan to discuss the case of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma who, after one round of chemotherapy, is currently refusing further therapy. This case ended up in court (as these cases often do) and led to a decision that is likely to satisfy no one (as these cases nearly always do).
Before I discuss Daniel’s case in more depth, however, let me make one thing clear. From my perspective, competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether–for virtually any condition. The sole exception that I can think of would be the case of a highly contagious infectious disease, where society has a right to prevent epidemics and, if necessary, quarantine someone who refuses treatment and refuses to avoid interaction with others. Note, however, that the right competent adults to choose whatever quackery they desire should in no way be construed to imply that quacks have any sort of “right” to provide them with quack treatments. The reason is that providing such treatments inherently involves making claims for them that are not supportable by science. In essence, selling such treatments involves fraud, even if the practitioner is a true believer and just as deluded about the efficacy of the woo he is selling as the person buying it is. Be that as it may, if a competent adult wants to refuse treatment and understands the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease and chooses bogus (word choice intentional) alternative “cures” instead, but it’s his call.
However, from my perspective (and that of the law in most states) the key to such self-determination is that the person must be informed of and understand the consequences of his actions, and there are three components to this understanding. First, of course, is mental competence; i.e., no serious untreated mental illness that impairs a person’s ability to perceive reality can be present. Untreated schizophrenia, for example, can definitely interfere with a person’s ability to evaluate information. The second is the ability to understand the disease and what the consequences of treatment or doing nothing are. That is why adults with mental retardation severe enough to prevent them from understanding are in general not considered competent to make such decisions. Indeed, it is why parents are expected to act on the behalf of their normal children to make such decisions. Finally, there is informed consent. A person refusing treatment must be told the consequences of his refusal and acknowledge them. Whether he believes what he is told is another matter, but it is not up to physicians to force treatment on someone just because that person doesn’t believe what they tell him, as long as the first two conditions are met.
The conflict arises when a parent decides to pursue quackery for a life-threatening but potentially curable illness for a child or a child refuses therapy. It is on such occasions that society as represented by the state has a compelling interest in overriding the parent’s decision and making sure that the child gets the best science-based treatment available. It is also a situation when parental rights, rights of self-determination, and the legitimate interest of society in protecting children can all clash in a most chaotic and nasty manner. That is exactly what is at issue in the case of Daniel Hauser, as described in a news report of the testimony given in his case:
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.
Daniel and his parents are justifying this decision using religion:
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.” He also filed a “spiritual path declaration” that said: “I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example.”
Straight to the grave, I was afraid at the time I first read that report.
As mentioned in the news report, Daniel has Hodgkin’s disease, which is a form of lymphoma. In its early stages, it is highly treatable with chemotherapy and radiation. Whenever I see a case like his, I always try to figure out exactly what stage the child’s cancer is, so that I can get a better estimate of what his true chances of survival with treatment are. I found more information in a more detailed account of the beginning of the court hearing, which included an account of the testimony thus far. Specifically, Daniel has nodular sclerosing Hodgkin’s disease and a mass in the middle of his chest. He was diagnosed earlier this year after he suffered symptoms of fatigue and weight loss, the latter of which is important, because such symptoms are known as “B” symptoms and portend a poorer prognosis. In any case, according to this account, Daniel has stage 2B Hodgkin’s disease (more than one lymph node basin involved but on the same side of the diaphragm, plus B symptoms), which explains why chemotherapy is being recommended. Patients with stage 1 Hodgkin’s disease can be treated effectively with radiation therapy alone, but stages 2 and above generally require the addition of multimodality chemotherapy, usually a regimen abbreviated ABVD, which consists of Adriamycin, Bleomycin, Vincristine, and Dacarbazine. With such a regimen, a boy like Daniel could expect a chance of long term survival of around 85-90%, possibly higher. Without therapy, Hodgkin’s disease is almost always a death sentence.
In testimony, Daniel’s mother reported that this is how they are treating Daniel:
Olson asked how Daniel’s cancer was being treated. Colleen said they are treating it by “starving it, by not feeding it.” She said she found some information on the Internet and started giving Daniel high-PH water, many supplements and an organic diet that includes lots of greens and lightly-sauteed rice.
This brings up two observations. First, there is no doubt that dietary changes and “ionized water” (the latter of which is, by the way, the purest quackery and has no value against cancer whatsoever) will not make Daniel feel as sick as the chemotherapy did. Ditto the “high pH water,” which sounds very similar to Robert O. Young’s pH quackery. Of course, over time the lymphoma will do quite a good job of that until Daniel eventually dies. Chemotherapy is no walk in the park, but it’s nothing compared to death by untreated lymphoma, and at least the chemotherapy can save Daniel’s life. Many times, chemotherapy refuseniks, who feel good for the moment off of chemotherapy, labor under the delusion that, even if they die, at least they won’t be as sick as they would be if they took the chemotherapy. All too often, they learn to their dismay, just how much of a delusion that belief is, and then it’s too late.
One of the issues complicating this case is that it is being framed as a freedom of religion. Usually, such issues do not involve cancer. I’ve discussed such issues here before elsewhere, although rarely for cancer patients. For instance, there was the case of the child who relied on prayer instead of medicine for their daughter’s type I diabetes, leading her to die of untreated ketoacidosis. Christian Scientists believing in prayer over medicine and Jehovah’s Witnesses refusing blood transfusions on the basis of a highly tenuous intepretation of a single passage in Leviticus also come to mind as other examples. In this case, Daniel is claiming to be a medicine man and church elder in a cult of faux Native American wannabes called the Nemenhah, a group led by Philip “Cloudpiler” Landis (who really should be called “Woo-Piler”), a white man who claims to be a naturopath and Native American “healer” peddling “cures” for AIDS and cancer. Cloudpiler has also been involved in another case of a teen (Chad Jessop) who refused effective therapy for melanoma, opting instead for a caustic treatment known as black salve. Indeed, “Chief” Cloudpiler even commented on a blog criticizing the court hearing the case. In general, however, although the First Amendment guarantees freedom of religion, it is not an unlimited freedom, any more than parental rights over their children are unlimited. The state can and should step in to protect a child endangered by very clearly magical thinking. And, make no mistake, this is magical thinking, as this interview with Daniel’s mother shows:
“We believe in traditional methods. To strip that away would be stripping his soul right out of his body,” she said.
When Olson asked more questions, Colleen Hauser said she understands Bostrom’s point of view but does not agree that Daniel’s cancer will metastasize. She said she would give permission for chemotherapy treatments if it were a matter of life and death, but would not agree to routine treatments. She said the survival rate with traditional medicine is “one hundred percent.”
This is magical thinking that will kill Daniel if allowed to stand. Mrs. Hauser seems to think that right now Daniel’s life is not in danger. While it is true that his life is probably not in immediate danger at the moment, it is most definitely in a lot of danger, and the danger grows the longer treatment is delayed. For one thing, the reason that chemotherapy is “routine” right now for Daniel is because he is in a relatively early stage, and the tumor is not causing complications that are immediately life-threatening, such as superior vena cava syndrome or airway obstruction. In other words, chemotherapy is semi-urgent in that it shouldn’t be delayed weeks or months, but doesn’t have to be started tomorrow. There is some time to deliberate and formulate the best science-based treatment. However, waiting too long runs the risk of the tumor’s growing and further spreading. If it does that, then stage 2B Hodgkin’s lymphoma can turn into stage 3 and stage 4 disease, at which point the chances for remission and long term survival go way down. Either way, it is a matter of life and death that Daniel receive treatment expeditiously, especially because the best shot at curing lymphoma is the first shot. Failure to induce a complete remission or a relapse after a remission is a bad prognostic sign, and often a bone marrow transplant is required to salvage such patients.
Moreover, no medicine, not scientific medicine and certainly not “traditional” medicine can guarantee a “100% survival rate.” For any practitioner to make such a claim require lying. Indeed, if there’s any percentage survival rate that “traditional” medicine can guarantee for Hodgkin’s lymphoma, it’s much. much closer to 0% than it is to 100% (spontaneous remissions do rarely occur), while for conventional, science-based medicine the survival rate is much closer to 100% than it is to 0%. Yet, based on religious beliefs and faith in “alternative” and “natural” medicine, Daniel and his mother labor under the delusion that magic water (which, let’s face it, is what they’re offering) along with supplements will cure Daniel. Moreover, they have been given far more deference in court than that delusion warrants because they are based on religion, rather than just a belief in “alternative” cancer cures.
When there is no religious issue involved, cases like Daniel’s are often presented as issues of “health freedom,” parental rights, or the right of a minor to control his or her body. This brings to mind a case from three years ago, a youth by the name of Abraham Cherrix. Abraham was 15 years old when he, with the support of his parents, refused further chemotherapy after one round in favor of rank quackery known as the Hoxsey therapy. The initial decision of the judge in the case was similar to that in the Hauser case: That Abraham had to undergo chemotherapy. However, within a month, an agreement was struck in which Abraham could undergo therapy at a clinic in Mississippi where a radiation oncologist who provides a dubious “immunotherapy” in addition to standard radiation therapy, would treat him. Fortunately for Abraham, although his tumors were fairly advanced at the time, radiation therapy shrank the masses in his neck that might have obstructed his trachea, leading to the need for a tracheostomy, or his esophagus, and he did fairly well, puttering along with radiation therapy being used–Whac-A-Mole or “spot weld” style–to zap new tumors as they pop up. He may well be one of the lucky few for whom radiation therapy alone cures his non-localized Hodgkin’s disease. At least I hope he is, given that his case has stretched out to past his 18th birthday, and he now can legally do whatever he wishes. Cherrix was in an arguably gray area when it comes to having full adult rights with respect to choosing his treatment, and from his perspective he was fortunate enough that his tumor was indolent enough that it waited out the clock until he could do anything he wanted.
Although we can argue about where the line should be drawn as far as children being old enough to have sufficient judgment and understanding to decide matters of life and death for themselves, I would posit that 13 is too young and that Daniel Hauser clearly does not have the capacity to understand the consequences of his decision. Even so, does that mean that it would be right to use force to make him accept life-saving chemotherapy? This is where the particulars get very, very messy indeed:
Furthermore, Colleen Hauser said she won’t comply with a court order requiring chemotherapy, and Daniel is likely to physically resist the treatment.
“He said he would bite the doctor’s arm off,” she said. Daniel is one of eight children who lives on the family’s dairy farm outside Sleepy Eye.
Is there a judge who would order a child physically restrained in order to give him chemotherapy? Besides the horrible images it gives to opponents of science-based medicine who want the right to subject their children to their faith-based quackery without any government interference, there is a huge practical issue. While it may be possible to physically restrain a child like Daniel in order to place permanent intravenous access and then, every so often, to give him chemotherapy, it would be very difficult and traumatic. In addition, it would be potentially dangerous. There would be nothing to stop him from trying to rip the intravenous access out to prevent further doses, potentially hurting himself, unless he were kept under constant surveillance. In other words, Daniel would in essence need to be imprisoned in the hospital for the duration of his therapy.
Then there’s the issue of radiation. Radiation therapy, more than chemotherapy, requires the cooperation of the patient, who must lie still on the table and do so every weekday for 30-40 days, depending on the radiation therapy regimen.(I admit that I am not familiar with the common regimens used for Hodgkin’s disease.) If Daniel won’t cooperate for radiation, he will risk having the radiation beam hit structures that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Yes, he could be sedated for each session, but there’s nothing good about sedating a child five days a week for however many weeks it takes to administer the full course of radiation. It wouldn’t be bad just for Daniel, either. Imagine the hit the morale at the hospital would take, with staff having to view such a spectacle day after day. In addition, you can bet that Colleen Hauser would make sure that the press knew every sordid detail and that the woo-o-sphere would spread it far and wide over the Internet, while even conventional news outlets would be likely to be far more sympathetic to Daniel than to the doctors carrying out the treatment and the judge who ordered it. Such an occurrence would be a disaster for Daniel, a disaster for the physicians and nurses treating him, and a disaster for science-based medicine.
Indeed, it might not even be ethical, and at the very least one of Daniel’s oncologists is very uncomfortable with the idea, as shown in this testimony:
Elbert asked if she would restrain Daniel. She answered that medication can be administered in different ways. She said she does see a need to restrain patients, but has never had to actually do it. She said she wouldn’t do something that would hurt a child.
She said the Mayo Clinic has teams of people who help patients with emotional issues and help children understand their treatments.
Elbert asked if Rodriguez had ever placed a patient under anesthesia and she replied she has never had to do it.
“I don’t know if you can ethically do that,” she said.
Rodriguez said children who are scared to be treated for cancer are common because of the treatment and because of changes in body image. She said it is normal for a 13 year-old to be scared of treatment. She said she has never had to sedate anyone for treatment.
Unfortunately, as he prepared to rule last Friday, the choices before the judge boiled down to:
- Try to make Daniel and his family see reason. (Not likely.)
- Force Daniel to undergo therapy. (Very ugly and problematic from an ethical standpoint, as I described above.)
- Let Daniel die from medical neglect. (Horrible and wasteful.)
Not a very palatable choice. I most definitely did not envy Judge Rodenberg.
There’s still another wrinkle. Following the case over time, I became convinced that religion is probably not the driving force behind Daniel’s reluctance to undergo chemotherapy but rather a convenient excuse for justifying what he wanted to do anyway. What made me think that is the fact that Daniel’s mother allowed him to undergo one round of chemotherapy right after his diagnosis. It was only after Daniel had a rough time with the first round of chemotherapy that suddenly he started refusing to accept any more. Add to that this bit of personal history, and the story becomes more complex, as one of Daniel’s doctors testified:
Joyce said during his testimony that Daniel’s diagnosis was not the same as Daniel’s aunt’s, who died after having chemotherapy.
Apparently this happened when Daniel was only 5. And then there’s the testimony of Shiree Oliver guardian ad litem:
Oliver said she thinks Daniel’s fear is caused by his aunt’s death and said she would recommend he see a counselor.
Oliver said she doesn’t fully understand the Nemenhah’s religious beliefs and doesn’t believe Daniel Hauser fully understands his religious beliefs or has the capacity to make decisions on his medical care by himself.
Again, I would argue that such is true for the vast majority of 13-year-olds.
As I alluded to earlier in this post, one commonality between Abraham Cherrix and Daniel Hauser is that they both agreed to conventional treatment initially and only balked when they experienced how difficult chemotherapy can be. Certainly, I don’t minimize how bad chemotherapy for lymphoma can be. Despite advances over the last 30 years that have produced both treatments that are less toxic and better supportive and anti-emetic therapies, it’s still no walk in the park, and it’s even harder for a child to understand why enduring it is necessary. All the child knows is that he feels lousy, that the drugs are causing it, and that he feels better during the breaks between therapy. The parents, loving their child, see him suffering and complaining about it, but are unable to relieve it. They can only watch, hurting as they see their child hurt.
Is it any wonder that a child would do anything to make the awful feelings stop? Is it any wonder that some parents would latch on to any excuse they can find to make their child feel better while at the same time convincing themselves that they’re still treating the child’s cancer? Is it really that surprising that what some parents latch onto is a delusion, be it “alternative medicine” or religion? Is any more surprising that they would gravitate to a religious set of beliefs that seems to validate their rejection of conventional medicine and at the same time tell them that everything will be OK?
I don’t know about you, but I don’t think it’s surprising at all. Using religion to justify irrational choices to oneself is not limited to just medicine.
There’s also another factor at play here. It’s one that’s always puzzled me. For some reason, chemotherapy holds a particular horror for many people. Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery for cancer, at least in my experience. Comparatively speaking, they often refuse chemotherapy, again at least in my experience. (Perhaps for a followup post I will have to find out if there are any studies that address these questions.)
Indeed, remember one of my earliest posts for SBM, when I wrote about cancer cure testimonials? I pointed out how, in many cases, the people making these testimonials accepted surgery for their tumors but rejected chemotherapy in favor of their favorite woo. Naturally, thereafter they almost always attribute their survival to the woo instead of the surgery. The reason such “testimonials” are convincing is because, for most solid tumors that haven’t metastasized, surgical extirpation is the primary therapy (exceptions include anal cancer and testicular cancer). For solid tumors successfully resected surgically, chemotherapy is then given in order to decrease the risk of recurrence. What that means is that it’s quite possible to be “cured” by surgery alone, particularly for common tumors like breast or colon cancer. Refusing chemotherapy may make cure less likely, but chemotherapy isn’t absolutely essential to a cure. Surgery is. The same is true of radiation as for chemotherapy. It reduces the risk of a tumor recurring in the location where it had been excised, but rarely is it curative on its own. Most people don’t understand that; so the testimonials for “alternative cancer cures” sound convincing: “I refused chemo and I’m still alive.” Of course, those who are no longer alive don’t give testimonials.
Unfortunately for Daniel, the primary treatment for Hodgkin’s lymphoma is not surgery. Indeed, surgery has a very limited role in Hodgkin’s lymphoma these days, mainly for diagnosis in the form of biopsies. Rather, the primary treatment for Hodgkin’s lymphoma consists of chemotherapy and radiation. Rejecting them is to reject any reasonable chance at cure.
Another aspect of the fear of chemotherapy may well be how much it is associated with death from cancer in people’s minds. As cancer patients get sicker and chemotherapy begins to fail, the cancer starts to take its toll. Dying cancer patients frequently take on the cachectic look of a starving concentration camp survivor as the cancer does its evil work. To the average person, it may well appear more as though it’s the chemotherapy that’s making the patient sicker more than it is the tumor. Then the patient dies, and the linkage between chemotherapy and a horrible, painful death is sealed in the mind of the family. It is an linkage that the “alternative” medicine cancer industry tries very hard to reinforce, as it offers “natural” medicines that supposedly cure cancer with no risk and no suffering. Would it were true! If it were, I would be all for using these “natural” therapies. But, sadly, whenever one looks at such claims more critically, they virtually always turn out to be without foundation or justification in science and clinical trials.
It’s not as if I’m oblivious to the fear of chemotherapy, either. Let’s face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells. And radiation therapy does “burn.” It’s just that, the way it’s given, it’s more toxic to cancer cells than it is to the surrounding tissue, and that differential toxicity can be increased by administering it in numerous small fractions over several weeks. Be that as it may, older chemotherapy regimens could be very toxic indeed, and death due to immunosuppression and infection is a possible complication of even some of today’s chemotherapy regimens. What has to be considered is the risk of the chemotherapy versus the risk of death from cancer. In the case of metastatic cancer, the risk-benefit ratio to be considered is the risk of complications from the chemotherapy versus the relief of disabling symptoms due to the cancer and/or the prolongation (but not saving) of life. Either way, it’s a tradeoff, with death looming in the background and some degree of suffering unavoidable. Worse, scientific medicine can’t promise what patients and parents want most: That everything will be OK. All it can give is percentages, which do not satisfy. And we all know that chemotherapy doesn’t always work; patients all too often die of their cancer anyway.
Many, if not most, “alternative” cancer cures doesn’t acknowledge that tradeoff. They promise the cure of deadly diseases with no risks and no suffering. I ask again: Is it any wonder that fearful parents or patients might seek solace in such irrational belief systems that tell them their child will be cured of a fatal disease with no suffering if they follow a “natural” therapy? Remember, Daniel’s mother testified that she believed that the “alternative” therapies Daniel was pursuing will result in a “100%” chance of Daniel’s surviving.
The more I think about this case, the more it seems to me that the specter of Daniel’s aunt is probably driving things and that religion is merely a convenient excuse for a decision that was far more the result of fear of a second round of chemotherapy in the wake of a rough course with the first round. After all, Daniel’s mother agreed to let him undergo chemotherapy at first. What probably happened is that they both freaked out when they saw the complications, echoes of Daniel’s aunt running through their minds, and that this led to their refusal to let Daniel undergo any further chemotherapy. Add to that being a member of a fake religion run by a highly dubious “healer,” and claiming that their religion forbids chemotherapy is a convenient justification to do what they wanted to do anyway regardless of religion. Indeed, apparently one of the lawyers assigned to Daniel says he will no longer acknowledge religion as a justification for Daniel’s decision:
Discussion about that testimony was forbidden by the judge, but an attorney assigned by the court to represent Danny’s best interests emerged from the session with a different perspective.
The lawyer, Thomas Sinas, said he’ll no longer acknowledge “the genuineness of Danny Hauser’s religious beliefs” based on his closed-door testimony. Sinas offered to explain the change, but Judge Rodenberg told him not to.
Perhaps that change explains why Judge Rodenberg ruled the way he did:
MINNEAPOLIS – Daniel Hauser doesn’t think he’s sick, and he thinks chemotherapy will kill him. The 13-year-old with Hodgkin’s lymphoma told a judge he got so ill he couldn’t walk the one time he got the treatment.
“I’d fight it if I had to take it again,” Daniel said, according to a transcript of his court testimony. “I’d punch them and I’d kick them.”
Rodenberg found Daniel, who likes to do field work on the family farm, play baseball with his siblings and go sledding, has been “medically neglected” by his parents, Colleen and Anthony Hauser.
The judge wrote that Daniel has only a “rudimentary understanding at best of the risks and benefits of chemotherapy. … he does not believe he is ill currently. The fact is that he is very ill currently.”
The judge allowed Daniel to stay with his parents, noting they love him and acted in good faith. But he gave them until Tuesday to get an updated chest X-ray and select an oncologist.
If the tumor has not grown and if Daniel’s prognosis remains optimistic, then chemotherapy and possible radiation appear to be in Daniel’s best interest, Rodenberg wrote. The judge said he would not order chemotherapy if doctors find the cancer is too advanced.
If chemotherapy is ordered and the family refuses, the judge said, Daniel will be placed in temporary custody. It was unclear how the medicine would be administered if the boy fights it.
Calvin Johnson, an attorney for Daniel’s parents, said the family is considering an appeal. For now, he said, Daniel is following the order and will have X-rays Monday.
Judge Rodenberg’s reasoning:
In this case, Rodenberg said, the state’s interest in protecting the child overrides the constitutional right to freedom of religious expression and a parent’s right to direct a child’s upbringing.
Medical neglect, Rodenberg said, clearly took place on April 29, when the Hausers did not follow one doctor’s advice to return to an oncologist, and on May 7, when they disregarded their family doctor’s recommendation to get the tumor X-rayed. Up until then, Rodenberg wrote, the family was seeking second opinions and alternatives.
That is undoubtedly true. The record shows that Daniel’s mother clearly went doctor-shopping, looking for a physician who would recommend something other than chemotherapy. She found none, because there is no other effective therapy for Hodgkin’s disease other than radiation and chemotherapy. Every doctor she saw told her that the child needed chemotherapy to have a good chance of survival, mainly because he does. Refusing the advice of multiple doctors regarding the treatment of a life-threatening disease clearly constitutes medical neglect and child endangerment.
Moreover, to me this appears to be a reasonable ruling that could, if adequately supported, avoid the ethical landmines involved in forcing Daniel to undergo therapy. Rather than taking Daniel from his parents’ custody immediately, Judge Rodenberg has made a strong point of placing the entire onus on Daniel’s parents to live up to their responsibilities as parents and get Daniel the medical care he needs to survive. The judge has even left an “out” if the tumor is too advanced. Although it’s unlikely that Daniel’s mother (or even the judge) realizes it, such a finding is highly unlikely. The reason is that even stage IV Hodgkin’s disease–particularly if it isn’t a relapse after a full course of standard treatment, still has a reasonable shot at being “cured” with standard therapy. Consequently, I have a hard time imagining any pediatric oncologist who would not recommend therapy in such a case. The only situation that I can imagine where an oncologist might recommend no chemotherapy would be if the child was already moribund and at death’s door, which Daniel clearly is not. Finally, the judge points out that Daniel’s testimony reveals that Daniel is severely learning disabled and can’t read. It is clear that he lacks anything close to the ability to give or refuse to give informed consent, the latter of which, as I mentioned above, is a hallmark of deciding whether a patient is competent to make his own medical decisions. Judge Rodenberg even allowed the parents to continue with their woo, as long as Daniel receives conventional chemotherapy:
Minnesota laws require parents to provide children with “medically necessary care,” he wrote. He said the Hausers may continue with their natural remedies, but added that providing “complementary and alternative health care is not sufficient.”
All of this still leaves open the question of what will happen after Daniel gets his next set of staging studies to determine the extent of his disease. Although such studies are clearly necessary before oncologists can decide upon a chemotherapy regimen, the decision still smells a bit of punting, of playing for time, because agreeing to undergo another round of X-rays (probably CT scans of the chest, abdomen, pelvis, and brain) is relatively easy. After all, it’s just a set of diagnostic tests. What happens if Daniel, having undergone the scans, decides that he will still resist any further chemotherapy? If he continues to refuse and–worse–actively resists treatment, medical personnel will be left with the problems I discussed above regarding the practicality and ethics of using force to administer treatment to a 13-year-old boy who is large enough to put up considerable resistance. Seeing this possibility, I think that the judge was wise to place the onus for treatment squarely on the parents’ shoulders and to leave Daniel in their custody. My hope is that, with family counseling and the judge telling the parents to have Daniel undergo therapy, presumably leaving them some choice as to where he will receive chemotherapy and who will administer it, Daniel and his mother will come around.
If there’s one thing I’ve learned, however, from cases like that of Abraham Cherrix is that the judge’s ruling is not likely to be the last word, nor is the story over by any means. There could be an appeal. Other developments could occur. There might be a “compromise” like that of the case of Abraham Cherrix. Whatever happens, I will monitor the story and report updates as events warrant. In the meantime, I hope that eventually Daniel and his parents will see the light and get him the best medical treatment available for his disease.
MORE ON THIS CASE FROM STEVE NOVELLA: