Abraham’s law: Bad medicine has made bad law

There hasn’t been much news in the last two or three months about Abraham Cherrix, the 16-year-old with Hodgkin’s lymphoma who rejected conventional chemotherapy, first in favor of the quackery known as Hoxsey therapy and then for the ministrations of a radiation oncologist in Mississippi named Dr. Arnold Smith, who combines non-woo (low dose radiation therapy) with woo (a form of “immunotherapy” involving “belly plaques” that has no evidence showing efficacy, not “more innovative techniques, such as immunotherapy, which uses medications and supplements to boost the immune system,” as the latest report describes it). When I last wrote about Abraham, his lymphoma had, not unexpectedly, recurred, this time in enlarged lymph nodes under his arms. Abraham was reported as planning to go back to Dr. Smith for more of the same. Apparently, he’s done so, and this was the result:

Abraham opted for the more targeted treatment, and the tumor in his neck and one near his windpipe shrunk. In December, however, Abraham noticed a lump near his right collar bone and another under his arm.

A scan at a hospital on the Eastern Shore showed he had five new tumors, one each in the lymph nodes under his arms, one near his collarbone and two in his lower left lung.

“It wasn’t a shock,” he said.

He returned to Mississippi for “pinpoint radiation ” of the areas where the tumors were located.

Rose Cherrix, who had separated from her husband by this time, said that when she found out that Abraham needed to return to Mississippi for more treatment, she had $30.

But she said people rallied around her, particularly those within the island community of Chincoteague, and raised the money she needed to drive Abraham to Mississippi.

Abraham stayed there from late January until mid-March. He suffered a bout of pneumonia that kept him in the hospital for a couple of days when he first arrived. The tumor near his collarbone was removed for a biopsy.

A diagnostic scan before he left on March 16 showed that the radiation had shrunk the new tumors.

At the same time, a misguided legislator in Virginia named John Welch III (R-Virginia Beach) introduced an equally misguided and useless piece of legislation that came to be called “Abraham’s Law.” His rationale, if you recall, was as follows:

The bill, which Welch plans to introduce Tuesday, proposes that a decision by parents to refuse a particular treatment for a child with a life-threatening condition should not be considered medical neglect so long as the decision is made jointly by the parents and a mature child.

The family also has to have considered the treatment options available, and believe in good faith that the decision is in the child’s best interest.

This is not particularly surprising, and, without chemotherapy or at the very least more widespread radiation therapy, Dr. Smith will likely continue to end up playing Whac-A-Mole with new tumors as they pop up in different lymph node basins until the tumor finally gets out of control, a process that could take many months to play out to its likely tragic end. Of more interest, are the consequences in Virginia of Abraham’s battle, consequences that, in essence, remove protections for teens with cancer and other life-threatening illnesses against parents who wish to pursue quackery instead of evidence-based medicine. As of last week, Abraham’s Law is now the law of the land in the State of Virginia:

RICHMOND — Gov. Timothy M. Kaine signed into law legislation giving teenagers and their parents the right to refuse doctor-recommended treatments for life-threatening ailments.

Mr. Kaine also announced Wednesday that several tax-relief bills were among the measures he approved as passed by this year’s General Assembly.

“Abraham’s Law” arose from the case of Starchild Abraham Cherrix, 16, of Chincoteague, and his parents, who chose alternative therapy for his Hodgkin’s disease and waged a successful court battle in Virginia against state officials who tried to force him to undergo chemotherapy.

After state social services agents objected to the family’s decision to forgo chemotherapy and asked a court to intervene, a judge threatened to jail Abraham’s parents for neglect and force him to undergo conventional cancer treatments.

Delegate John J. Welch III, Virginia Beach Republican, and Sen. D. Nick Rerras Norfolk Republican, introduced the legislation as a result of the legal battle

“I believe this measure strikes the appropriate balance between the rights of parents and a mature child to make informed medical decisions, and the responsibility of the state to protect the health and safety of children,” Mr. Kaine said in signing the bill.

Medical and child advocacy groups, including state social services officials, opposed the measure, but it won overwhelming House and Senate approval.

The bill allows children 14 or older to refuse medical treatment if the child is sufficiently mature, all his treatment options have been considered and if the refusal of a prescribed regimen is done in what the parents believe is the child’s best interest.

Courts still would have to determine whether parents in such cases are neglectful.

When I first mentioned the possibility of this law, back in August, I characterized it as, in essence, a useless, feel-good measure that would have no real effect because it wouldn’t change the definition of what constitutes abuse. I’ve since changed my mind because Abraham’s Law appears to have morphed into something much broader than its original incarnation. In its original form, Abraham’s Law would have applied only to children with “terminal illnesses.” This law has broadened its reach to children with “life-threatening” condition and changes the definition of an “abused or neglected child” as follows:

Definition of abused or neglected child. Specifies that a decision by parents or another person with legal authority over a child to refuse a particular medical treatment for a child with a life-threatening condition shall not be deemed a refusal to provide necessary care if (i) such decision is made jointly by the parents or other person with legal authority for the child, and the child; (ii) the child has reached 14 years of age and is sufficiently mature to have an informed opinion on the subject of his medical treatment; (iii) the parents or other person with legal authority, and the child have considered alternative treatment options; and (iv) the parents or other person with legal authority, and the child believe in good faith that such decision is in the child’s best interest. Stipulates that this test shall not be construed to limit the provisions of §16.1-278.4 on children in need of services.

Worse, I hadn’t realized this before, but apparently Virginia law now lists as an exclusion in the definition of an abused or neglected child:

However, no child who in good faith is under treatment solely by spiritual means through prayer in accordance with the tenets and practices of a recognized church or religious denomination shall for that reason alone be considered to be an abused or neglected child.

In essence, if you’re a child between the ages of 14-18, the State of Virginia no longer protects you from quackery or religious idiocy. In essence, parental stupidity, something state laws normally try to protect children against as much as possible in medical matters, is now legal. Worse, it’s not just limited to children with “terminal” illnesses, where, it can be argued, nothing can save them and taking them away from their parents to have them obtain conventional therapy would cause them undue stress in the remaining weeks or months of their lives. It now includes any child with a life-threatening condition.

In other words, it now applies to all children in the State of Virginia with cancer, no matter how treatable the cancer is, because cancer is certainly a life-threatening condition.

Consider the practical import of this bill. Let’s say a 14-year-old is diagnosed with leukemia. Let’s further say that it’s an eminently treatable form of leukemia, which can be treated with chemotherapy, with an expected remission and long term survival rate of over 90%, which is not uncommon. Under this law, parents could choose any quackery they wanted, be it the Hoxsey therapy, urine therapy, homeopathy, or whatever, as long as the decision to pursue this quackery was made “jointly with the child.” Now consider this: For a 14-year-old (or even for a 16-year-old or 17-year-old) living with his or her parents. How difficult do you think that it would be for the parents to get the child to agree with them, particularly if, as most alties would do, they frame it as a choice between the horrors of chemotherapy (and, in the case of other tumors, surgery and radiation) versus a “natural” alternative that won’t cause them any pain or symptoms at all? Yes, saying it’s not neglect to use woo to treat cancer in a child as long as the child agrees to it is the height of disingenuousness, and passing a law that codifies that statement is the height of irresponsibility.

But it’s worse than that.

Consider the case of a 14- to 17-year-old whose parents are Christian Scientists or other religions that claim that prayer alone can cure disease. Naturally, in the vast majority of cases, the child will have been raised in the same religion and will believe in its tenets, as his parents do. If that child gets cancer, it’s pretty likely that he would agree with his parents that prayer and whatever rituals demanded by the religion would be the proper treatment for the cancer and thus would agree with whatever woo the religion prescribes for treatment. Here’s an even more disturbing example: What about a child whose parents are Scientologists and who is unfortunate enough to develop depression? Scientology is totally opposed to psychiatry and the use of drugs to treat mental illness; consequently, the parents would almost certainly refuse any psychiatric interventions, and the child, having been raised in the woo of Scientology, would almost certainly agree. Although, I would guess, there is case law to allow the state to intervene if the child is impaired in his ability to make decisions by mental illness, there’s nothing in Abraham’s Law that I can find that addresses that possibility.

Of course, the proponents of this travesty of a piece of legislation will point to the part that states that “nothing in this subdivision shall be construed to limit the provisions of §16.1-278.4.” Presumably that section of Virginia Law might still allow the state to step in, right? Well, read the actual provisions of §16.1-278.4. There’s nothing there defining medical neglect. I’m not a lawyer, but there’s nothing there that I can see that would prevent parents from doing anything they want, as long as the child agrees and the parents appear to believe they are acting in the best iinterests of the child.

In essence, the State of Virginia has eviscerated its child welfare services. It’s basically eliminated the ability of its child welfare services to intervene in the case of 14- to 17-year-olds whose parents decide to pursue woo instead of effective medical treatment, not just for children with terminal illnesses, but for any child in that age range with a serious, life-threatening condition. As I’ve said before, one can quibble about whether 17- or 16-year-olds are mature enough to decide their own medical care, but how can anyone argue that most 14- or 15-year-olds are or are sufficiently independent of their parents not to simply go along with their decision, be it woo or evidence-based medicine? Yes, the article claims that the courts would still have to determine whether parents in such cases are neglectful, but, given the wording of the new definition of a neglected or abused child with respect to medical matters, I can’t see how a court could do anything but rule in the parents’ favor in nearly all cases. I have to wonder how long it will be before a child in this age range dies because of this decision.