Misguided faith in alternative medicine endangers a child yet again

I hadn't planned on starting a theme, but I recently learned of yet another story of what happens when parents insist on giving their children worthless and unproven treatments, such that it inspired the blogger from whom I discovered the story to ask, "Is it my imagination, or are these stories of parents fighting to pursue potentially worthless therapies for kids with life-threatening illnesses increasing in frequency?" I certainly hope his perception is not correct, but I can't be sure, as I haven't been closely paying attention to such stories for that long.

This particular story concerns a 13-year-old cancer patient named Katie Wernecke, who was diagnosed with Hodgkin's lymphoma in January and whose parents have been fighting with the state to let them take her to Kansas to receive intravenous vitamin C therapy. Ultimately, Katie was taken away from the parents by Child Protective Services when it was charged that the parents were interfering with her chemotherapy:

Katie was diagnosed in January with Hodgkin's disease, a cancer of the lymphatic system. By May, her parents believed chemotherapy had killed the tumor in her chest and feared the recommended radiation treatment would do her more harm than good.

After a doctor informed Child Protective Services that her parents were interfering with treatment, Michele Wernecke fled with Katie, prompting the state to take custody of the girl.

Katie has since been with a foster family in Houston and undergoing treatment.

In court Friday, Dr. Robert Wells, Katie's pediatric oncologist, said the chances the teen can beat the illness are now less than 25 percent because of the repeated delays. He said the alternative her parents want to try isn't a viable option.

Last week, after a four month legal battle, a compromise of sorts had apparently been reached:

The parents of a 13-year-old cancer patient who have been fighting the state over her medical treatment will be allowed to take her to Kansas to pursue intravenous Vitamin C treatment.

First, however, the girl must undergo five days of chemotherapy, state District Judge Jack Hunter, newly appointed to the case, ruled Friday.

The case was back in court after Katie Wernecke's parents tried to stop their daughter's chemotherapy that was to begin this weekend. They argued the treatment was experimental and that they had not been properly informed about it.

Two days ago, a judge ordered that Katie be placed in the custody of her parents, and presumably she will now receive the intravenous vitamin C, but at least she should receive her chemotherapy first. Unfortunately for Katie, intravenous high dose vitamin C does no good for advanced cancer (or cancer of any kind, for that matter), the claims of its advocates notwithstanding. Randomized double-blind trials testing whether high dose vitamin C can impact cancer progression and survival have been uniformly negative. This is an issue that was settled scientifically through clinical trials back in the 1980's, but for some reason it keeps rearing its ugly head periodically.

Katie's case is little different than the case I discussed the other day, where parents subject their child to a health regimen or treatment that is not in that child's best interest. Hodgkin's lymphoma in children, virtually a death sentence only a few decades ago, is now highly curable with chemotherapy and radiation, even though they are commonly diagnosed at an advanced stage. The standard treatment involves chemotherapy and low dose involved field radiation therapy (LD-IFRT), which involves 15-25 Gy administered to the involved region. Indeed, initially, oncologists estimated Katie's chances of long term survival to be around 80-85%, which is about typical for children with this particular cancer.

This is the spin on the story as told by the family on a blog they've set up, ostensibly written by Katie herself when she was diagnosed:

My doctor is named Dr. Alter and he asked my dad to come look at the results of the Cat Scan with him. It was then Dr. Alter told and showed my dad that I had a large mass under my breast bone chocking off the windpipe and the bronchial tubes to each lung were reduced to pencil size. The cancerous mass was also wrapped aroung the aorta and veins and my heart was being pushed way off to the left side. The doctor told him the Cat Scan looked like it my have spread to the lungs, liver, kidneys, and spleen too. It was Hodgkin's Disease - stage IV - which is the worse as it gets. It was very serious and I would have died had dad not brought me in to the hospital when he did. I wasn't told that at the time. I was told that I had Hodgkin's Disease a type of lymphatic cancer and that the doctor could make me better.

This is advanced stage. But, even so, it was still potentially quite curable, even more so given that, according to the family subsequent workup revealed that the tumor was actually all above the diaphragm:

I have another Cat Scan and a scan called a Gallium Scan. In this scan they inject radioactive gallium into your viens and it shows where the cancer is located. The cancer is still a very large mass under my breast bone. The good news is that it seems to all be located above the diaphram and the doctor changes the call from stage 4, the worse, to a stage 2b. That is the Power of Prayer!!!!. Thanks to all the hundreds of people praying for me. Dr. Alter explained to me and my Dad his treatment protocol. Dr Alter said I would get 2 chemo treatments plus radiation or I could get 4 chemo treatments only. If response to chemo was good after 2 treatments it would be followed by radiation if not we would get 2 more chemo treatments.

So that was the plan. Unfortunately, the family did not follow the full plan. As sometimes happens, Katie's parents appear to have been lulled into a false sense of security because the tumor showed such a good initial response to chemotherapy. In my practice, patients receiving neoadjuvant chemotherapy for breast cancer sometimes wonder if they need to have that mastectomy after all when the chemotherapy response is impressive, and it can sometimes be difficult to explain why they do still, in fact, need surgery. ("The tumor is gone! Why do you need to cut me?") There also seemed to be a large religious component in the parent's decision not to continue radiation therapy. Here is the family's description describing the excellent response of the tumor to chemotherapy:

To me that says there is no active cancer and the tumor is liquidifing. They said this is not normal or "atypical" for lymphoma unless the mass is entirely decomposing or dead. They don't understand it! For us we know that it was the "prayers and the power of God!"

Katie's doctors continued to recommend radiation because her cancer had been advanced at the time of diagnosis. It may also have had poor prognostic factors, but I am unable to determine this for sure. In any case, as can be seen in the quote above, the parents seemed to believe that prayer had saved Katie and from the tumor. Although elated that chemotherapy had appeared to destroy the tumor, the parents balked at the planned followup radiation therapy, fearing its long-term toxicity.

"Radiation's effects on a child are a lot different than they'd be on me," said Edward Wernecke, 53, Katie's father. "It could shape her whole future — make her sterile, stunt her growth, cause her to get breast cancer in her 20s. The effects would be with her the rest of her life."

Katie's parents' attitude also influenced Katie such that at one point she strenuously resisted doctors and her foster family, leading to a judge signing an order to cut off all contact. Katie has been quite adamant at times that she does not want treatment. Unfortunately, what many people (including Katie and her parents) fail to understand is that, even after an apparent complete response to chemotherapy, there are often still microscopic deposits of tumor left, even in the face of a negative PET scan and CT scans showing that the original tumor has seemed to have disappeared. Unfortunately, we do not yet have a test sensitive enough to detect these microscopic tumor deposits that would allow us to determine who does and doesn't need additional therapy, either in the form of surgery or, in cases like Katie's, radiation). Indeed, this is exactly what I tell patients who question why they still need surgery after an apparent complete response to chemotherapy.

Although we as physicians are obligated to be honest and straightforward about the potential benefits of a treatment weighed against its potential risks, such honesty sometimes produces unfortunate consequences, particularly if communication between doctor and patient is not optimal; if the patient has a pre-existing distrust of the medical profession; or has altie tendencies. Some patients (or parents) fixate on the potential complications of therapy and ignore its likely benefits, and I suspect that's what happened here. I also suspect that there may have been a failure of communication, as well. For example, in a blog entry, the family speaks as though the complications are inevitable:

The radiation would damage her lungs (cystic fribrosis), her heart muscle would be damaged, her breasts would be damaged and would likely develop breast cancer later, and her spinal column in her back would be damaged and she would not grow any taller and may have learning problems. Her thyroid and thymos glands would be damaged and she would have hormone problems.

Personally, if I were the parents, I'd gladly trade a risk of "stunted growth" and an increased (but still relatively small) chance of secondary malignancies 20-30 years down the road, especially when compared to the risk of the child dying from cancer now. No, I'm not minimizing the chances and seriousness of potential complications. Indeed, thirty years after treatment, 1/3 of survivors will have health problems that might be related to the treatment and all are at higher risk for miscarriages, sterility, and secondary malignancies. And, yes, there is a significant chance of pulmonary or cardiac damage from chest irradiation. Overall, such children have roughly a four-fold increased risk of having severe health problems attributable to their therapy. Nonetheless, these risks must be weighed against the chances of the tumor coming back and should be considered in the context of the history of the threatment of childhood tumors, where, a few decades ago, nearly all children suffering from such malignancies died from them. Also, studies show that the addition of radiation therapy to chemotherapy improves event-free survival (EFS, defined as survival without tumor recurrence). The question remaining is which subgroups can do without radiation, and in that area research is still ongoing. As the discussion on the NCI website states:

Overall survival of patients who receive chemotherapy alone may be similar to that for patients who receive both chemotherapy and LD-IFRT, despite a difference in EFS. This results from the ability to effectively salvage patients who relapse after initial therapy.[9,18,21] If this potential can be accomplished with relatively nontoxic salvage therapy, then initial treatment with less intense therapy may be appropriate. If, however, salvage therapy results in a substantial risk for late events such as cardiac failure or secondary malignancies, less intense initial therapy would be unwise [Emphasis mine.] Thus, it will be important to evaluate prognostic factors that may influence the magnitude of the EFS benefit that derives from the use of LD-IFRT in patients achieving a complete response to initial chemotherapy. In the German study, the benefit of radiation therapy was greater in patients with advanced-stage disease at presentation. Other potential prognostic factors may include histology, erythrocyte sedimentation rate, bulk disease, and presence of symptoms.

It is not entirely clear whether Katie achieved a complete response after chemotherapy. In their blog entries, the parents seem to claim that she did; I have been unable to verify this independently. Now, if Katie survives her relapse, it will definitely require extremely toxic therapy chemotherapy followed by stem cell transplantation, as well as radiation. If she beats the odds and survives, Katie will be at a much higher risk of suffering from the complications her father feared than if she had received her LD-IFRT in a timely fashion as recommended.

Finally, this case brings up a difficult issue leading to high emotions. People are, quite understandably, quite attached to their children, and even parents who make bad decisions almost always do so believing they are doing the best thing for their child. (To see an example, visit the comment thread in this post about the story, where the conversation starts out intense but generally civil and reasonable and then degenerates into ad hominems and smear tactics directed at Katie's doctors.) It is quite clear that competent adults should be allowed to do whatever they wish with their own bodies and that they should have the right to refuse treatment, even if it means their death. However, that right does not extend to endangering their children by refusing therapies proven to be effective, as children have no choice in their own therapies and are not considered competent to make their own decisions in these matters. Texas CPS had the obligation and duty to intervene. Although the therapeutic decisions in this case are admittedly more complex, when you boil it down, there is little difference between this case and a case of Jehovah's Witnesses refusing to allow their child to receive a life-saving blood transfusion or the parents I discussed who imposed a diet detrimental to their children's health. Worse, taking Katie to receive a useless therapy like intravenous vitamin C will only waste still more time.

ADDENDUM: A followup on this story is here.