Sunday, December 02, 2007

Witnessing Evil?

On November 28 a young man named Dennis Lindberg died in Seattle's Children's hospital. He died because he refused treatment for leukemia. I have personally met many individuals close to this case. I work in Skagit County, WA - the same county where Judge John Meyer made his well publicized ruling. Last week, A Jehovah's Witness who happened to have a deep vein thrombosis taught me about the Winesses' perspectives about blood. His wife shared that she was in the same congregation as this young man. The attending hematologist for this procedure gave lectures about leukemia when I was a medical student at Children's Hospital in Seattle. My wife worked with him for a new diagnosis of leukemia that presented in a kid that came to the Children's ER. I have taken courses with and from some of the professional ethicists on staff at Children's. I would not choose the same path for myself of a child in the same situation, but when you see the story from so many angles, it's harder to be so critical of the outcome.

On top of the complexity already inherent in this case, there are a few distortions, inaccuracies and partial truths about this story gaining traction in the blogosphere - particularly in the atheist community. This post is meant to bring to light some of those lapses in intellectual honesty. We all complain about how science is too-often misused by politicians; when dealing with an issue as controversial at this one, the least we can do is present all of the facts.

Here are some points that if you rely on blogger news, you may not have encountered:

(1) Jehovah's Witnesses were founded in 1872. Any reference to the faith being founded on Bronze Age or Dark Ages thinking is inaccurate hyperbole. The religion is based on 19th Century pre-modern medical thinking.

(2) The treatment denied by the judge was not the stem cell transplant. It was a blood transfusion. Why is this distinction important? Stem cell transplants are the single most expensive procedure in medicine (hundreds of thousands of dollars just to do the procedure). We do them (and many health insurers cover them) because they work, but not all patients facing leukemia choose to be transplanted. Some cannot afford it. Some do not want to go through the pain of the procedure. Others (like this patient) have different reasons. If after providing all of the information, the patient does not consent to a procedure, the medical establishment usually respects this decision. Keep in mind that the legal decision here was related to the blood transfusion which could keep the patient alive for several days, not the stem cell transplant, which has 70% survival at 5 years as reported in the media. It's not as simple as a 750 word article would have you believe. (The Seattle PI printed a good story overall.) The Cheerful Oncologist offers a refreshing perspective on this issue.

(3) There has been some criticism of the words "mature minor." Some say it is a contradiction. The terminology comes directly from Washington State law. Health care providers are very familiar with the term; mature minor is most often applied to pregnant teenagers and to teens who need psychiatric services. The right to make autonomous, confidential (parent-free) medical decisions about reproduction (including abortion) and mental health issues is routinely conferred to 14-year-olds. It has not been previously applied to patients with blood diseases. Joana Ramos outlines some of the issues in a white paper she authored:
Doctrine of the Mature Minor
In most states of the US, 16 is the minimum age for donating blood with parental consent. In a variety of instances, teens are able to consent to, or refuse, medical treatments including surgery. It is customary that 14 is the age of consent for confidential reproductive health services, including elective abortions; substance abuse treatment and counseling; and for consent or refusal of mental health services, even when parents feel that a child’s life may be in danger(1).

The legal concept of the mature minor is well established in case law nationwide(2). It governs such topics the age of consent to engage in sexual activity, to marry, and to make independent and confidential decisions about medical care. The following list of rights extended to teens serves as a good illustration of this concept. Many of these rights involve activities that carry varying amounts of risk, may have both psychological and physical health consequences, and may be neither beneficial nor life-saving. While the laws vary in each state, teens commonly have the right to:

• make decisions as to one’s own guardian or custodial parent at 12
• travel and to purchase a ticket to travel by public conveyance anywhere in the US at age 13 without parental permission
• be employed at 16, but to engage in agricultural work at age 12, in other occupations at 14, with certain jobs being exempt from any age limits
• obtain a license and drive a motor vehicle at age 16
• have one’s body pierced at age 16 without parental consent
• enlist in the military at age 17, with parental consent
• petition the court to become an emancipated minor with cause
• make decisions on behalf of a child parented by one’s self at any age

References:
1. Stenger, RL. ( 1999-2001) “Exclusive or Concurrent Competence to Make Medical Decisions for Adolescents in the United States and United Kingdom”, Journal of Law and Health, 14(2):209-41.
2. Forman, DL. (1998) Every Parent’s Guide to the Law. (pp. 87-154) New York: Harcourt Brace.
The legal precedent in this case is that the 14-year-old was conferred mature minor status for a condition that was not reproductive or psychiatric. In his criticisms of this case, Orac makes the right concession to adult Jehovah's Witnesses regarding decisions about transfusion. He believes a grey area to apply between age 15 and 17. Based on the above examples, I think the range should be 14-17.

(4) Some have written this to be an ignorant backwards, if not abusive decision. To those who think this, I would invite you to seek out a Jehovah's Witness. Ask him about blood. If you don't learn from that individual, every congregation has several experts and health advisers. I bet you will learn things about bloodless surgeries (a few of which are at least as successful as traditional approaches) and artificial blood that you had know idea about.

(5) The newspapers included a fact about this case that most bloggers have left out. The patient's biological parents (who filed the injunction to force the blood transfusion) had a long history of drug abuse. They were in and out of jail, but had been in recovery only recently. They flew to Seattle days before the court hearing and the patient's death. If their son was dying of leukemia, why were they not in Seattle in the weeks and months before this incident?

The bottom line here is that this case is complex. At its center is a 14-year-old's autonomy. Closely related to that is the freedom of religion. The same individuals who value the separation of church and state have called for that wall's dismantling via a court of law. In the end, the judge looked at this young man's ability to make life and death decisions. My suspicion is that Dennis Lindberg was better prepared to make this decision than you or I.

8 comments:

Mike Haubrich, FCD said...

Thanks for bringing in this perspective. I have refrained from commenting on this story, because I knew that there had to be more to it than what is being reported.

thomas said...

I too thought I would pass on this one. But when I saw critical points missing from posts by authors who usually do their homework, I needed to chime in.

There may yet be more issues that arise here (as in the case of the Ashley Treatment), but for now I think the judge made the correct decision.

BEAST said...

Hi

I have read your email and your post, and thanks for clearing some of the legal doubts I have with regards to the terms "major minor" (Which sounds like a term from a music score!)

I think I want to make a clarification here: I did not say JW was a Bronze Age Religion: I simply allude to the fact that they based the religion on a Bronze Age Belief.

As for experts and whatnots in their congregation, clearly I felt that in these case, the law seems to bend backwards in favour of religion. If the child had been atheist, do you think the judge would even consider letting this one slide?

Beast

tom sheepandgoats said...

I also appreciated your thoughts. It is the only other post I have seen (I wrote one myself from the JW perspective) that is not condemnatory

thomas said...

Beast,

Thanks for your comment and clarification. I do think that if the young man had been an atheist AND had wanted not to receive the transfusion (and more importantly the stem cell transplant), AND understood fully the implications of his decision, the judge would have absolutely ruled the same.

My point here is that the central issue of this case is NOT the religion, but rather the law governing teenagers' medical decision-making rights. After the emotion of the case settles, I think that more people will realize this.

In this situation,

PalMD said...

It gets more and more interesting. I still argue strongly that an adult JW has the same autonomy rights as anyone else, but that a 14 year old, despite not being a toddler, has inherently changing and immature judgment and that the courts should have erred on the sided of letting him live to regret his decision. That being said, I don't know enough about the case to know if the transfusion would have "saved his life" or merely extended it for a day. That's a whole different story.

Monika said...

Hello,

I am in the process of writing a major paper (required to graduate) and I chose the topic of mature minors in the context of the refusal of medical treatment, in particular refusal of blood transfusion by Jehovah Witness mature minors. As far as the law stands in Canada (where I live) courts will enforce Child Services apprehension of a mature minor (or the court will assume parens patriae jurisdiction -act as the legal guardian of the child) to compel the minor to receive essential medical treatment (so often the cases are enforced where there is a pretty good likelihood that the child will survive with treatment/blood transfusion). The interesting thing is that whenever Charter challenges are brought to the courts (our Charter is analogous to the US Amendment Rights) either the court will find no violation of the mature minors rights (usually claiming three different rights including the right to religious freedom) or if their right is violated it is found to be saved by a provision in the Charter that allows violations in so far as they are justifiable in a free and democratic society. Now we have not yet to date had a Supreme Court of Canada decision (that will be then the decisive law in Canada) on this particular issue, but just couple of months ago the Supreme Court decided to hear a case where a 14 year old Jehovah Witness girl was given blood transfusion against her will. As a matter of fact most cases I have read so far children have been compelled to receive blood transfusions even though the court found the children to be mature minors and thus capable to refuse consent to medical treatment. The VERY FEW cases in which the court allowed the mature minor to refuse consent the minor was at such an advanced stage that treatment was unlikely to save the child's life. From what I read about this case the young boy was very sick, they only found out his condition 4 weeks prior. So, I do not think that there is certainty in this area just yet. Most children will be saved in fact, but of course that opens Pandora's box of religious freedom.

and ps.: if anyone has relevant comments and/or information to help me with this damned paper please let me know! THANKS!

Joana Ramos said...

I am glad to see you address this important issue, and also glad that you found my work on rights of minors and medical decision-making to be helpful.

Therefore I would like to offer some clarification on points you raised re:stem cell transplants (SCT) . Contrary to popular perception, while SCT is certainly one of the most drastic of medical procedures, is not a surgical procedure. The only surgery involved is the implantation of a central line, usually a Hickman or Broviac catheter.
The transplant itself looks much like a blood transfusion.

There is usually some discomfort and/or pain for the donor of the stem cells, but that is temporary. Discomfort may be due medications used to mobilize the white blood cells ( which contain the stem cells) prior to apheresis cell collection from the peripheral blood stream. If cells are harvested from the bone marrow, the extraction is done in the OR under anesthesia. Through either method, the donor's bone marrow is regenerated in 1-2 weeks.

It should be noted that most patients with leukemia do not need transplants. Most children with the most common type of childhood leukemia, acute lymphoblastic leukemia or ALL, are cured by chemotherapy without transplantation The cure rate for ALL in the US is now about 75%.

Also, it is fair to say that at CHRMC, every effort will be made to ensure that any child judged to be in need of a SCT for medical reasons will receive one, and the facility will work with all families to make financial arrangements. WA's charity care law applies to hospital care for patients of all ages, as well.

However, the same is not true in many other states, however. And despite the better situation here in WA, remember that this coverage applies only to hospital care, not to the myriad other personal costs, like outpatient prescription drugs and family living expenses,lost wages of parent(s), etc. etc. that are inherent in SCT and treatments for other catastrophic illnesses.

For those who want to learn more,a website that I created on the topics of practical needs of SCT patient families in WA, and on equity issues in the field from a national perspective, was just launched last week. Check out the BMT Basics website at: www.bmtbasics.org


Joana Ramos