Update on Katie Wernecke

Things have been very quiet as far as the story of Katie Wernecke, the 14-year-old girl with lymphoma whose parents fought a legal battle with the State of Texas to be able to choose "alternative" therapy involving high dose vitamin C, despite the fact that her conventional therapeutic options had not been exhausted and she still stood a reasonable chance of being saved with chemotherapy and radiation. More recently, we learned the sad news that her cancer had relapsed in a big way, with tumors in her chest. When last we saw her, she had written a heartbreaking story about a dying girl with cancer who made teddy bears for children with cancer, suggesting that she knows her cancer is now probably incurable.

Unfortunately, there is no new news on Katie's condition, but I did find this news story. Apparently Katie's parents are suing the State of Texas for trying to save her life:

HARLINGEN -- The family of an Agua Dulce teenager who was taken into state custody after they refused medical treatment for her cancer has filed a federal lawsuit alleging their constitutional rights were violated.

Family lawyer Charles Bundren today declined comment on the lawsuit against state officials and two constables but said Katie Wernecke, now 15, is doing well and attending school. He would not say whether the cancer was in remission.

[...]

The lawsuit, filed May 31, claims state and county officials violated the Fourth and 14th amendments, which protect against unlawful search and seizure and guarantee the right to family privacy, by entering the Wernecke home without a search warrant and taking custody of Katie and her brothers before having a proper hearing.

"The right of a family to remain together without the coercive interference of the government is a fundamental right protected," the suit says.

It requests unspecified financial damages.

Patrick Crimmins, a spokesman for the Department of Family and Protective Services, would not comment on the lawsuit.

"I will say that while Katie was in our care, we did everything according to the law and according to what we determined was in her best interest," Crimmins said.

Not being familiar with Texas law, I can't comment on what the chances are that this suit might prevail. My best guess is that it has a low probability of success. Katie was only 12 or 13 when she was diagnosed, and upon diagnosis she had a very treatable cancer. Her parents refused radiation for her and then took off and hid when the State tried to intervene. Parental rights are not absolute. Adults have every right to refuse standard treatment, but they do not have the right to deny such treatment to their child in favor of quackery. Although I wish it were not so, sometimes it is necessary for the state to step in and assure that a child receives the treatment necessary. Unfortunately, most state laws are so weighted in favor of parental rights that parents can get away with almost anything when it comes to choosing treatment for their children. Remember, Katie's parents rather quickly won their legal battle and took Kate to a clinic in Kansas for high dose vitamin C and other dubious "treatments" for her cancer.

The problems with the reporting of this case are twofold: First, reports treat the woo that the Werneckes pursued as though it were equivalent to choosing a different accepted treatment. It's not. It's no different than the reporting of the Autism Omnibus trial, where credulous bloggers lazily "present both sides" as though both sides had equal validity. Finally, the story is often framed as a case of overbearing government trampling all over parental rights when in reality it was a case of the government actually tryng to do something good and save a child's life from the incredibly bad choices of her parents.

What I'm really curious about is what this story does not answer: How is Katie doing? Has her tumor progressed? What treatment is she receiving now?

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Also, do you remember the name of the Utah child whose parents refused him treatment a couple of years back? I can't remember his name, and am interested in his condition as well.

What are your thoughts if this case was applied to the Amish?

Pinko, his name is Parker Jensen, but I can't find anything more recent than 2003 when it comes to his status.

[quote] What are your thoughts if this case was applied to the Amish?[/quote]

The Amish do not refuse medical care. They have some predilection towards some genetic disorders and they generally refuse any kind of testing to make sure that a couple doesn't have these things, but for illnesses, cancer, accidents, etc they most definitely will go see a doc and take their meds.

So the Amish are not a good example, Other groups though go through this all the time, and the same thing happens very frequently. If it's an adult they generally let them die as they please. For children though, it leads very often to court decisions. And every case is treated individually. I have witnessed a few such cases, some children were forced to get treatment by court order, some were let die. It moves the choice out of the hands of the docs and into the hands of the lawyers. Get a good lawyer and a sympathetic judge and your child might just be able to die the way you want them to.

By Planetary Gear (not verified) on 14 Jun 2007 #permalink

If parents have the right to assent to medical care for their children, they also have the right to refuse it.

Somehow I don't think many people are interested in taking control over children's treatment out of the hands of parents and putting it in doctors'.

By Caledonian (not verified) on 16 Jun 2007 #permalink

Straw man. It's actually the law and the courts that decide whether a parent's choosing quackery constitutes neglect. Doctors' and social workers' testimony is only part of the equation that the laws generally consider--an important and often decisive part, but still only part. Katie's case is an example of this; the parents won, even though they made no secret of their desire to take Katie to Kansas for high dose vitamin C treatments, which are ineffective against cancer. While I am in general sympathetic to the view that government overreach is a potential problem in such cases, I do see a role for state governments to step in when parents are choosing quackery that will likely result in the death of or serious harm to a child.

Adults may have the right to choose quackery or no treatment at all if they so desire, but children, not being able to make that decision for themselves, are considered in general to deserve some measure of protection from medical neglect when parents endanger their lives by choosing quackery over evidence-based medicine for life-threatening conditions. Christian Scientists, for example, do not have the right to deny their children medical care in favor of their "prayer" treatments, nor do Jehovah's Witnesses have the right to deny their children blood transfusions when they are bleeding and require them. The case of Katie Wernecke is, when you come right down to it, no different than either of these examples. Katie's best shot at survival was chemotherapy and radiation. Her chance of survival with the course her parents chose is slim at best and more likely none.

It's not solely a matter of rights though (and I agree that framing it that way is a strawman) - it's also a matter of responsibility. Along with the right to choose how to care for your children comes the responsibility to care for them properly.

A parent has the right to choose what clothes they provide for their child - as long as they are fulfilling their responsibility to see their child is adequately clothed for the weather.

A parent has the right to choose what food they provide for their child - as long as they are fulfilling their responsibility to see their child is adequately fed.

A parent has the right to choose the medical care their child receives - as long as they are fulfilling their responsibility to see that their child is receiving adequate medical care.

Just as children need protection from parents who refuse to feed or clothe them, they need protection from parents who refuse them proper medical care. Medical neglect is, if anything, more serious then other forms of neglect because it can have serious life long consequences. As well as fatal ones.

By PennyBright (not verified) on 16 Jun 2007 #permalink

Placing responsibility with the courts is evading the issue. Courts are going to go with what doctors say - not individual physicians, but a consensus - and that effectively means that parents don't actually have the ability to make medical decisions on behalf of their children.

I doubt this concerns the people who agree with the consensus - who objects to having their opinions put into practice? - but I suspect you'd not be so eager if you disagreed and were overruled.

Certainly people should be protected from treatments that cause death or serious injury - but harmless treatments that fail to arrest a disease process are another matter.

Saying that the government "has a role" means very little. What matters are the rules that determine when the government must intervene, and those rules are neither clear nor non-arbitrary, or you wouldn't have this update.

By Caledonian (not verified) on 16 Jun 2007 #permalink

Certainly people should be protected from treatments that cause death or serious injury - but harmless treatments that fail to arrest a disease process are another matter.

So basically, if I'm reading you right, you seem to be saying that you wouldn't have a problem with it if Katie's parents had said that they would give her no treatment and rely on prayer alone, as the Christian Scientists do and that the government. After all, that's a "harmless treatment" that would definitely fail to arrest a disease. As for the treatments that the parents did subject Katie to, among them included at least high dose vitamin C, which is a useless treatment against cancer that does have known complications. And, yes, it is the consensus of medical science that determines what treatments at this time are considered effective and ineffective. Who else would determine that but doctors?

I beg to differ; a parent choosing a course of treatment that fails to arrest cancer, as Katie's parents did, is in essence letting the child die. PennyBright nailed it. Not providing effective therapy for cancer to a child is neglect, period.

You are correct about one thing, though. The law needs to be much clearer than it is.

This may not be the best place to put this, but I just finished reading the book _About Alice_ by Calvin Trillin. A short (read it while a child was in a two hour lifeguard class) sweet dedication to his wife. She was 38 years old when she was diagnosed with lung cancer, even though she had never smoked. Her treatment of surgery, chemo and radiation worked... she lived for another 25 years. Only to die of a heart condition caused by the radiation treatment (but she got 25 MORE years to live after being diagnosed!).

There is a section page 70 about all the kind souls who tried to talk her into macrobiotic diets, Vitamin C and laetrile. She got to the point of telling people "that her husband always said that his idea of alternative medicine was a doctor who hadn't gone to Johns Hopkins". She remarked at a medical conference years later "We got a lot of phone calls from people recommending apricot pits, or some such thing. To us, and particularly to my husband, that was an indication that they thought I was going to die."

A very lovely little book:
http://www.amazon.com/About-Alice-Calvin-Trillin/dp/1400066158/