Wednesday, November 02, 2005

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.

20 example(s) of insolence returned:


At 11/02/2005 9:23 AM, Anonymous Mark Paris said...

I wonder where this type of behavior comes from. Why should people distrust professionals who have devoted a significant part of their lives to a field, and who want a successful outcome as much as a parent? Is it a poor education? Poor communication, a potential factor you mention, compounded by lack of understanding and a generalized fear of cancer? A desire for miracles? Grasping at straws because of a fatalistic belief that this case will be one of the relatively low percentage that do not have good outcomes? How much of a factor does religious belief play in this behavior in general? I have a hard time believing that the parents do not have their child's interests at heart, despite behavior that appears to show the contrary. I seems we could reduce this type of behavior if we could understand what causes it.

 

At 11/02/2005 10:44 AM, Blogger Lord Runolfr said...

I daresay that party of the problem is fear of the unknown. The parents don't know much about the treatment or its side effects, so they're reluctant to expose their daughter unnecessarily. They apparently attributed much of the girl's initial improvement to divine intervention rather than the chemotherapy; if you're raised on the "power of prayer", I'd say it's easier to credit than medical therapies that you don't understand.

The vast amounts of altie disinformation circulating on the internet, radio, and by word of mouth certainly can't be helping the situation, since they typically cast doubt on the benefits of conventional treatment and emphasize negative side-effects.

Proper education might combat the problem, but only if people want to learn and will listen to knowledgeable sources of information. Given the horribly low signal-to-noise ratio on the internet and in the general population, getting out the message will be an uphill battle.

 

At 11/02/2005 10:49 AM, Blogger M said...

It's certainly part of a recognised process Mark; I've a book on my desk on challenging behaviour and special needs. There's a section on coming to terms with your feelings:

Initially you will feel:
Shock and denial.
You can't take in what's being said. You go numb.
"It can't be true! The doctors must be wrong!"
"Let's find another specialist." (or look for a 'miracle cure')


It may be indicative of the general emotional immaturity of modern society that people 'get stuck' at this shock and denial stage.

 

At 11/02/2005 11:25 AM, Anonymous Mark Paris said...

On a related note, I have found when going to a doctor with my late father or with my mother that patients listening to a doctor often get stuck very early in the conversation. The doctor says something important and the patient immediately tries to understand and think about what it means. In the meantime, the doctor has gone on to something else, and the patient never catches up. Thus the patient leaves the doctor's office without really hearing and understanding everything the doctor has said. This is especially true of older people, where hearing deficiencies compound the problem, but it's also true of most everyone, I think. Imagine having the doctor say, "You have cancer." That kind of knocks your world around, and it takes time to come to terms with it. Of course, in this instance, the parents apparently had multiple opportunities to talk to the doctor.

 

At 11/02/2005 11:34 AM, Anonymous Anonymous said...

Mark,

All I can say is that you don't need to be a religious zealot to grasp at straws. I think it's more pf a psychological burden: if you're unable to bear the truth, you try to 'change the truth' so you can bear it.

And then, some things just can't be explained. perhaps they stem from an inherent distrust of authority, or a single bad experience with someone who 'promised they were right'.

My sister--who is a NURSE, damn it--is an excellent example. She worries about mercury, and doesn't give her kids all the vaccines.

I once discussed flu vaccines for my kids with a hospital's head of immunology (who I quizzed re study results and who could answer my pointed questions, unlike my excellent non-researcher 'standard' pediatrician). As an ex drug researcher, i was concerned about some safety testing. After the disciussion, I got the vaccine. But when I passed that on to my sister I got the response "of couse that's what SHE would say, she's in that field".

The result is to DISCREDIT experts... by virtue of their knowledge! What a strange world we live in.

 

At 11/02/2005 1:22 PM, Anonymous Anonymous said...

I think a difficult lesson that I have had to learn as a Pediatrician is that sometimes parents make decisions that are completely irrational. For some parents no amount of explaining of risks versus benefits is helpful. If the parent is not rational, they will not hear anything that is said. Fortunately, most children are pretty durable and will survive the bad decisions. Some will not. This applied to cancer therapy ,immunizations, but also seat belt usage and storing the family handgun next to the video games. Our society cannot save all of these children, but that doesn't mean we shouldn't try. Understanding this particular fathers motivations would require a good clinical psychologist and a willing patient.

 

At 11/02/2005 1:24 PM, Anonymous Anonymous said...

I am the parent of a childhood cancer survivor. My daughter had intense chemo and total body radiation and a bone marrow transplant. This was at the age of 2. Today at 15 she is alive and not without long term effects. She has permanent replacement lenses since the radiation caused cataracts. She was on growth hormone for years and only managed to get to 5 foot. She is currently on hormone replacement therapy to go into puberty (at 15 she looks 9). She is a type 1 diabetic although no one is sure the cancer treatment cause that. She has no spleen, has dry itchy skin from chronic GVHD and not so subtle learning disabilities. Regrets? Nope. She's alive and in so many ways, is a normal teenager driving me nuts. When I want to talk to her, I go to her room not to the graveyard.

 

At 11/02/2005 2:13 PM, Blogger Kristjan Wager said...

The blogger you quoted said:

"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?"

Unless I'm mistaken, I don't really belive it's the case. Christian Scientists have been using faith-based cures instead of medical cures for a century.
However, I think people are doing it for other reasons now. And thus, get more attention in the media.

 

At 11/02/2005 3:22 PM, Anonymous Camille said...

II had a disagreement with an antivax person. She said that I didn't have enough education in science to understand the problems with mercury and vaccines and the wonders of chelation...

I had just started going to UCD at the time (I'm middle aged, for those of you who don't know of me).

I asked her, "At what point in getting educated will I leave the category of not-knowing-enough-to-understand-the-issue

and move into the knowing-so-much that-I-must-have-joined-the white-lab-coated--Big-Pharma-funded-cabal to-spread-the-lies-about-vaccines..."

She didn't answer.

I think Prometheus hits many of the issues of why people go for unproven quack therapy in his recent blog entries on photoninthedarkness.blogspot.com


It's hard to be a parent. I'm sure these guys think that vitamin C is going to do the trick for their daughter and some quack is helping them to believe that.

Thank you to the anonymous parent who is happy to have his/her child around in spite of the side effects of chemo. I appreciate your comment.

 

At 11/02/2005 3:25 PM, Anonymous Anonymous said...

I know this strays a little bit off this topic, but I have to speak up when it comes to all these intravenous therapies. I went to a website that said, and I quote: "Intravenous chelation therapy with EDTA (a synthetic amino acid that binds up or "chelates" heavy metals), has been shown to be safe and effective in reversing atherosclerosis (hardening of the arteries), preventing heart attacks and strokes, improving circulation and overall health, and can be used as an alternative to bypass surgery and angioplasty. It takes a series of visits to a medical doctor (MD), or licensed naturopathic medical doctor (NMD)...." It goes on, followed by a product, which you can purchase online. Doesn't this type of stuff make you cringe? People are using the Internet as their primary doctor, and possibly damaging their health, or worse, dying in the process. I won't post my name because I work for an online supplement company as a writer. What I'm asked to write is so disturbing that I probably won't last much longer at this job, out of principle. I know from firsthand experience that websites promote their products by ONLY discussing the positives in an effort to increase product sales, while DELETING all the negatives. It's very scary.

 

At 11/02/2005 4:39 PM, Anonymous Anonymous said...

The judge in the case gave full control and custody back to the parents: http://www.chron.com/cs/CDA/ssistory.mpl/topstory2/3433698

 

At 11/02/2005 11:12 PM, Blogger Don Sheffler said...

If I'm recalling this story right, apparently at the time that the daughter was taken from the parents they were pleading ignorance. They claimed that they didn't intentionally refuse treatment, that somehow they thought the initial treatments had done the job, that it was all just a big misunderstanding, yada yada. "Please don't take our daughter." The daughter was taken anyway because it was obvious that the parents had interfered despite repeated pleading by the medical staff to continue the treatment. Their blog made it obvious that they thought they knew better.

I don't think that by May, "her parents believed chemotherapy had killed the tumor in her chest." They believed it was prayer and whatever else. They only pretended to believe this in a last ditch effort at keeping their daughter with them. I think they just lied.

The parents now are further proving how disingenuous they were from the very beginning, insisting on yet another quack treatment, as if they've known better all along.

Looks like they've essentially murdered their own kid. Sad.

 

At 11/03/2005 12:35 AM, Anonymous Anonymous said...

If there's one thing that makes this debacle all the more depressing, it's that if the patient manages to survive, it will no doubt be attributed to the parents' "courageous battles in the face of the actions of the medical and legal establishments". Of course, those actions were most likely the only things that afforded them the occasion to spread that desperately ignorant message.

 

At 11/03/2005 12:58 AM, Blogger bonni said...

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.

My jaw just about hit the floor when I read that. Chemotherapy for Hodgekin's Lymphoma is "experimental" and they weren't "properly informed", but intravenous Vitamin C as a treatment for cancer isn't experimental and they WERE informed about it?!

Uhm.... what?

 

At 11/03/2005 1:18 AM, Anonymous HCN said...

Anyway there is this article http://www.quackwatch.org/01QuackeryRelatedTopics/Cancer/c.html ... Which has a list of several Mayo studies done in the 1970's that have shown large doses of Vitamin C did not do better than placebo. Here is one:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=384241&dopt=Abstract

There were also trials done 30 years ago laetrile (also known as "Vitamin B17", but actually the main ingredient is my namesake), and again it was shown that even if the stuff kills cancer cells in vitro, when used in in vivo the stuff caused cyanide poisoning before going after the cancer:

http://www.cancer.gov/cancertopics/pdq/cam/laetrile/HealthProfessional/page4

So even though both Vitamin C and laetrile have been shown clinically to be worthless to cancer several decades ago, people are still promoting them (and claiming that no research has been done on them).

Add to that those that claim cancer patients must do coffee enemas (eewww... plus a waste of good coffee) --- it is very disgusting that these parents get sucked into this weirdness. Plus incredibly disgusting that those lower than slime mold attempt to make money off of these desparate people.

This, plus a post on Photoninthedarkness AND something at JREF reminded me of something from a posting on Usenet by a Healthfraud listserv member:

First, the page where he describes all the alternative treatments he undergoes:
http://www.sumeria.net/health/rectcan.html

Second, his obituary:
http://obits.abqjournal.com//results?obit_id=56606

(and if that is not enough... scroll down the left hand side of this blog for a comment on an "Orange Man")

 

At 11/03/2005 6:24 AM, Anonymous AndyD said...

Just an observation: A search of the Houston Chronicle's archives brings up several references. Every time, the Vitamin C therapy is referred to as 'an altrernative'; at no point does the journalist bother to use the correct word, i.e. 'Ineffective'. It's not a debate!.

How can people get away with charging money for 'Treatments' that are well demonstrated and known not to work?

 

At 11/09/2005 5:43 PM, Anonymous Cary said...

I absolutely agree that it is criminal to withhold life-saving treatment from a young cancer patient in order to pursue an unproven therapy, and Vitamin C is certainly unproven in humans, but you might want to note that according to findings published in Sept. in the Proceedings of the National Academy of Sciences, IV Vitamin C may well turn out to be a potent cancer fighter.

http://www.forbes.com/lifestyle/health/feeds/hscout/2005/09/12/hscout527931.html

A number of our most effective chemotherapy drugs -- including Taxol, from the Pacific Yew tree, and Vincristine, from the Periwinkle -- have been synthesized from natural chemicals found in plants...the idea that other drugs of this nature will come down the pipeline (and like the two mentioned above, become standard cancer drugs) is far from far-fetched. In fact, it is highly likely.

Just my two cents.

 

At 11/10/2005 4:18 AM, Blogger Gadfly said...

Don's right; her parents did claim prayer, etc. did the trick.

And Camille, great snarky answer to your sister.

 

At 11/10/2005 9:11 PM, Anonymous Charles said...

I came here via the Sceptics Circle (which I love and read "religiously")

First off I find the whole parents-refusing-treatment-for-their-sick -children" thing an absolute tragedy.

But I would like to follow up Cary's comment with a question for Orac (or anyone qualified) about what he thinks of the new study Cary is talking about:
http://www.pnas.org/cgi/content
/abstract/102/38/13604
I'm always wary of new "cancer cures".
Was this done in an animal model or is this just more "ascorbic acid in the sky with diamonds" kind of stuff?

 

At 11/10/2005 10:05 PM, Blogger Orac said...

Tell you what. I'll look up the article at work tomorrow (my university has an online subscription to PNAS) and look at the full article.

It doesn't surprise me that alties would cite this, even though it says nothing about clinical efficacy.

 

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