Respectful Insolence

One last comment on the Dennis Lindberg case

I’ve been spending a bit of time discussing the sad case of Dennis Lindberg, a 14-year-old youth with leukemia who died because of his refusal to accept a blood transfusion when his hematocrit fell to life-threateningly low levels apparently during chemotherapy. My position is that, while competent adults have the right to refuse transfusion for whatever reason they wish, children are not able to understand the implications of their actions and therefore must be protected from such beliefs. I do point out that I understand that the situation may not be as clear-cut in the case of an adolescent and that teens old enough to refuse to cooperate with their care present a special problem, but even so, I was profoundly troubled by this case.

A Jehovah’s Witness arrived in the comments, apparently upset that I and others were being so harsh on JW beliefs regarding transfusion, concluding with some questions. I thought I’d oblige him, since he went to the trouble to write his own blog post about it. He starts out:

The lad suffered from leukemia. Nobody imagined they could cure him. Instead doctors thought he would likely (70% chance) survive at least for the next 5 years with their regimen which included transfusions.*

Wrong. In leukemia, surviving five years is usually equated with a “cure” because recurrences are fairly uncommon after five years. The blogger, Tom Sheepandgoats, seems to think oncologists just pulled that number out of their behinds. It’s true that there are tumors where recurrences after 5 years are more common (for example, breast cancer), but the leukemias aren’t among them. There is also ten year survival data for leukemia, as well.

More interestingly, Tom pointed me to this commentary by thomas:

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. (Although the Seattle PI wrote a good story overall.)

I’m not at all sure why he’s harping on stem cell transplant. My response would be that, if a stem cell transplant was what Dennis needed to survive, then I would seriously question the decision of the doctors to proceed with the pre-transplant chemotherapy if they knew they wouldn’t be allowed to transfuse him. Now that’s a waste of resources (and placing the patient at very high risk of having something happen exactly like what did happen to Dennis, to boot). The reason is that it’s incredibly difficult to do a stem cell transplant without blood transfusions, because the pre-transplant chemotherapy is so harsh on the bone marrow. Also, I find the fact that a Jehovah’s Witness would accept a stem cell transplant very curious indeed, given that increasingly stem cells are derived from the blood and, even when they’re not, the stem cells are harvested from the bone marrow, which is the source of the blood. Given that many (although by no means all) Jehovah’s Witnesses won’t even accept their own blood back once it’s been out of the body (autotransfusion), this willingness to accept a stem cell transplant merely points out the quality of arguing about how many angels can dance on the head of a pin that pervades the contortions of logic that JWs go through to justify why it’s morally unacceptable to receive blood or packed red blood cell transfusions but morally acceptable to receive some blood fractions or stem cell transplant. As for thomas’s suggestion that those of us who think the JW beliefs regarding transfusion are irrational and based on an obvious misinterpretation of a bronze age text, I would point out that lots of people who believe in UFOs can sound quite reasonable in discussing their beliefs. That doesn’t make their beliefs any less irrational.

Finally, although JWs love to conflate the two, bloodless surgery is a separate issue from JW beliefs. JWs often like to try to use it as justification that they are right, and the discussion was no different this time. Tom Goatsandsheep puts it this way:

For example, Surgeon Bruce Spiess addresses the Australian and New Zealand College of Anesthetists a few months ago, and declares blood transfusions have hurt more people than they’ve helped. Transfusions, he observes, are “almost a religion” because physicians practice them without solid evidence that they help.

[...]

Jehovah’s Witnesses steadfastly refuse blood transfusions (for religious reasons, not medical) and have created hundreds of Hospital Liaison Committees composed of members who interact with local hospitals and doctors. As a result, some in the medical field have pioneered bloodless techniques. By eliminating the risk of foreign tissue, human error, and blood-borne diseases, these new techniques offer a safety margin that conventional blood transfusions do not. The film Knocking states there are over 140 medical centers in North America that offer some form of bloodless surgical techniques. Might the day come, or is it even here already, when the number of lives saved through such medicine will outnumber those lost by a few members of a relatively tiny religious group that stuck to its principles amidst much opposition

The studies that I’ve seen that make a such a strong claim that blood transfusions increase the risk of death and complications are almost always textbook examples of the fallacy of confusing correlation with causation (although I may have to look in detail at the specific study cited, which I can’t get now because I’m not at my office as I write this). Why? Because you have to think about why patients are transfused and who is transfused. It’s the patients with more severe anemia, greater blood loss, and/or a worse coagulopathy. In other words, it’s the patients who have lost more blood during surgery or who were anemic before surgery. It’s also very difficult and ethically perilous to study in a randomized, double-blind, because it’s incredibly hard to design such a study where you wouldn’t either have to give transfusions to patients who don’t need them or withhold them from patients who do need them. Decent studies that look at this issue acknowledge that correlation doesn’t necessarily equal causation and point out that the correlation may well be due to a lot of confounding patient-specific factors. Decent studies also look more at where our triggers for transfusion should be (are they set too high?) rather than making such over-reaching blanket claims. Indeed, the study cited merely appears merely to suggest a much lower “trigger” level for the hematocrit than previous and is a retrospective database review, with all the potential confounding factors such studies involve. It may be correct. Even if it is, it would not mean that we should almost never transfuse, which Dr. Spiess seems to be saying, just that we should transfuse less.

In any event, Tom’s bringing up a red herring. As he points out, JWs do not refuse blood transfusions because they think that accepting a transfusion is medically riskier than not accepting it. They refuse them because of their bizarre (and only 62-year-old) interpretation of a 3,000+ year old passage in a book written by members of a pre-scientific society. It would be utterly irrelevant to JWs if transfusions were absolutely, positively 100% risk-free and never, ever caused any adverse reactions or resulted in bad outcomes. They’d still refuse them, even at the cost of their own lives, as Dennis Lindberg and Emma Gough did.

As for the “risk-benefit” ratio, in saying that transfusions have hurt more people than they’ve helped, Dr. Spiess sounds as though he’s coming perilously close to crank-dom. (Whenever I see a scientist or physician calling a medical intervention or a scientific consensus a “religion,” my skeptical antennae start twitching rapidly.) Saying that we transfuse too often and that 25% of transfusions are not medically necessary (which he has said, a much weaker criticism than his statement above) is one thing. Most physicians would probably agree that more transfusions are done than necessary. But extrapolating from that to say that transfusions harm more people than they help and then to state, as Dr. Spiess does, that they’ve “never been tested” for safety and efficacy is going beyond the pale. Is Dr. Spiess serious? There are literally thousands of articles about the risks and benefits of transfusion indexed on Medline. There can be honest differences of opinion on what the meaning of all of these studies taken in toto is for transfusion guidelines and there is a growing consensus that transfusion comes with complications that may in many clinical situations suggest to us that we as physicians shouldn’t transfuse as often as we do, but it’s ludicrous to say that transfusion has “never been tested.” How would we know about these complications if transfusion has “never been tested”?

Finally, it’s rather odd to see JWs taking credit for bloodless surgery and drugs like Epogen. Physicians didn’t develop these drugs and techniques because of pressure from JWs; they developed them because (1) blood and blood products are limited resources of which there are frequent shortages, sometimes severe (indeed, there’s almost always a blood shortage in the summer), not to mention that it’s expensive and difficult to maintain a system of blood banks and blood donation; (2) there are known risks of infection (very low) and of transfusion reactions (relatively low but common enough to be a significant concern); and (3) there are other complications due to transfusion that have become more appreciated over the last decade or two. These developments would have occurred even if there were no such thing as Jehovah’s Witnesses, and whether or not these developments find their way into widespread use will have little or nothing to do with JWs. If the science supports their efficacy physicians will ultimately adopt them; if the science doesn’t, they won’t.

Comments

  1. #1 Big Al
    December 3, 2007

    The Israelites came up with some weird dietary laws, no lobster or ham sandwiches,or blood sausages, what a life.

  2. #2 apy
    December 3, 2007

    The real question is, if a Jehovah Witness is turned into a vampire, will they feed on blood or stick to their religion?

  3. #3 Marcus Ranum
    December 3, 2007

    Transfusions don’t help??? There are a lot of combat veterans of WWII and Korea who’d probably beg to differ.

    I’ve often wondered about the origin of goofy religious strictures and why they are so important to “god”. My pet theory has long been that, until recently, sex and diet was about the only thing that most of the victims of religion had to control. They are something every human has (whether they want it or not) and that every human has to do. So obviously, it’s a great hook to hang woo on. Maybe as societies get more complex and technological, religious strictures will move up the technology stack. I.e.: “god” will decide that talking on one’s cell phone in a restaurant is a sin, etc.

    Hmmm… can anyone come up with a biblical passage to justify the latter? I could actually get behind that one. :)

  4. #4 Calli Arcale
    December 3, 2007

    Several Terry Pratchett books dealt with the weirdness of religion. Actually a lot of them did (his books deal with life, basically, and all that comes with it), but some of the more notable ones include “Small Gods” (excellent book; I highly recommend it as a fable about how religions get started, how they evolve, and how they are abused), “Pyramids” and the recent “Monstrous Regiment”. The latter book introduced a god who was apparently schizophrenic, imposing increasingly bizarre strictures on his people as time progressed. This whole topic has put me in mind of the god from “Monstrous Regiment”.

    It’s a worthwhile theory that religions start controlling more of people’s lives as those lives become more sophisticated; however, sex and diet were certainly not all that religions have controlled prior to the “modern” era. Islam has forbidden images of all kinds for a very long time; that’s why those intricate patterns seen in Moorish mosaics and Persian rugs came about, really. Artists were forbidden from depicting anything realistic, which drove an explosion of abstract art. Judaism didn’t just control sex and diet in ancient times; 2,000 years ago they had armed guards enforcing observation of the Sabbath. Pagans banned monotheism, and would execute monotheists (and atheists, obviously) for the crime of offending many gods and bringing harm upon the community by doing so. The ancient Egyptians are famous for their complicated beliefs and rituals concerning death. Religions have barred the unworthy from certain places, rendered certain animals holy, dictated moral codes, governed justice, decreed how crops are to be planted, and so on. If it is something that humans can do, a religion has probably tried to control it at some point. Sex and diet are pretty fundamental, so they come up a lot, but I don’t think religion as a whole has ever confined itself to those two.

    (BTW, if you read Leviticus, the book which actually specifies which animals Jews are permitted to eat, you’ll find it declares a lot of other things unclean. It’s not just pigs and shellfish and menstruating women that are unclean — there’s a detailed procedure for how to deal with a mildewed house, for instance.)

    I’m sure that it’s possible to justify banning cell phone use in restaurants. ;-) If one is sufficiently creative, one can make Scripture ban *anything*. And therein lies the fundamental problem with fundamentalism.

  5. #5 Rpbin Peters
    December 3, 2007

    The JW who would accept a stem-cell transplant is being hypocritical IMHO. Because I’ve been transplanted almost 29 years – kidney transplant – I’ve developed an interest in learning about all forms of transplantation, including stem-cell transplants.

    Unlike solid-organ transplants, which require us recipients to go through a surgical procedure to implant the organ into our bodies, stem cells and bone marrow are infused. Stem-cell and bone-marrow transplants are more like blood tramsfusions in the sense that they are administered intravenously through some sort of permanent catheter.

    This means that stem-cell and bone-marrow transplants are like TPN as well, in the sense that TPN – total parenteral nutrition, or IV feedings – would be seen as a form of feeding in the mind of the average JW. Yes, that’s their logic – that this verse in Leviticus essentially means that one is eating blood in the same sense that TPN represents IV feeding. You are eating intravenously if you get TPN. Likewise, you are eating stem cells IV when you get a stem-cell transplant, and the same ought to be true in the mind of the JW because bone marrow and stem cells are blood-forming organs.

    Just my two cents’ worth.

  6. #6 Danny Haszard
    December 3, 2007

    The Watchtower religion invented the no blood transfusion dogma in 1945,thousands of men,women,children have perished in obedience.

    Eventually,in 2007 and beyond the Watchtower will find “new light” and repeal the blood ban.
    This means that all those thousands of deaths were needless.

    Isn’t this mass suicide by religion,like in Jonestown with 900 dead there?

  7. #7 matt
    December 3, 2007

    The author states:

    “The studies that I’ve seen that make a such a strong claim that blood transfusions increase the risk of death and complications are almost always textbook examples of the fallacy of confusing correlation with causation (although I may have to look in detail at the specific study cited, which I can’t get now because I’m not at my office as I write this). Why? Because you have to think about why patients are transfused and who is transfused. It’s the patients with more severe anemia, greater blood loss, and/or a worse coagulopathy. In other words, it’s the patients who have lost more blood during surgery or who were anemic before surgery. It’s also very difficult and ethically perilous to study in a randomized, double-blind, because it’s incredibly hard to design such a study where you wouldn’t either have to give transfusions to patients who don’t need them or withhold them from patients who do need them. Decent studies that look at this issue acknowledge that correlation doesn’t necessarily equal causation and point out that the correlation may well be due to a lot of confounding patient-specific factors. Decent studies also look more at where our triggers for transfusion should be (are they set too high?) rather than making such over-reaching blanket claims. Indeed, the study cited merely appears merely to suggest a much lower “trigger” level for the hematocrit than previous and is a retrospective database review, with all the potential confounding factors such studies involve. It may be correct. Even if it is, it would not mean that we should almost never transfuse, which Dr. Spiess seems to be saying, just that we should transfuse less.”

    The problem lies with the fact that transfusions have been practiced without regard to safety. How? There have been few studies to determine what is good transfusion policy regarding the issues you raised above. How is it that doctors feel so confident about a procedure that they have not determined the appropriate triggers for? I mean that is blanket negligence.

    How useful/dangerous are transfusions? The immediate need for the patient is volume. The argument that anemia is a factor is ridiculous because transfused blood is unable to carry O2 initially. Why would you use a substance which suppresses the immune system to boost volume when saline can do it without aggravating the body? The adherence to Transfusion dogma is similar to religious fervor, it is held up without regard for obvious dangers without any substantial evidence it is necessary.

    JW’s are responsible for the attention the medical community has given to the much superior techniques of bloodless medecine and surgery. But as you mention and we are ready to point out ourselves, JW’s maintain their stand because of our religious beliefs. However we do feel that the obvious benefits of avoiding the insertion of a dangerous biological substance prove the Bible’s admonition to AVOID blood is inspired of God.

  8. #8 Calli Arcale
    December 3, 2007

    The immediate need for the patient is volume. The argument that anemia is a factor is ridiculous because transfused blood is unable to carry O2 initially.

    So? It’s able to carry O2 fairly soon thereafter. Are you seriously suggesting that because transfused blood isn’t instantly oxygenated that saline (which is incapable of transporting oxygen) should be used instead? That’s utterly ridiculous. Volume ain’t everything, as I’m sure you’ll understand if you try draining 8 pints of your own blood while infusing 8 pints of saline.

    A few weeks ago, I was at the bedside of a woman who was receiving transfusions. She was very anemic. The transfusions had a profound and rapid effect on her. The color came back to her face, she became alert, and she felt a lot better. Transfused blood does a hell of a lot better at treating anemia than saline does — or even plasma alone.

    You are welcome to your belief that blood is a dangerous substance that God wants you to avoid. But please, don’t claim that you are doing so out of reason. Do it because you believe in it. Don’t do it because science tells you, because it doesn’t. If you think you’re avoiding blood because of lack of evidence, then you are fooling yourself. The evidence is clear: blood transfusion is a very effective, often lifesaving treatment that is generally safe. Don’t ignore the evidence. If you wish to refuse blood transfusion on spiritual grounds, that’s fine. That’s your decision. But don’t let somebody lie to you about it.

    As I said to someone on another message board, faith isn’t supposed to be easy. You seem to think it should be, so if facts go against your faith, you deny the facts because it’s easier than suffering for your faith — and easier than questioning whether your faith is really correct. Go the easy route if you must, if your faith is so weak that you cannot bear questioning and must prop it up with lies and stolen credit. But consider this: if your faith really is that weak, why do you keep it?

  9. #9 John C. Welch
    December 3, 2007

    The problem lies with the fact that transfusions have been practiced without regard to safety. How? There have been few studies to determine what is good transfusion policy regarding the issues you raised above. How is it that doctors feel so confident about a procedure that they have not determined the appropriate triggers for? I mean that is blanket negligence.

    Proof? Please to show where all transfusions are performed without regard for patient safety. I think such endemic callousness should be trivial to spotlight in a verifiable manner.

    Also, for the class, define “few studies”? How many studies do there need to be to achieve an appropriate quantity so that they can be taken seriously? ten? a hundred? One per year forever?

    Show that without exception, there are no defined triggers whatsoever for transfusions please.

    You speak with such authority that I am sure you’ll have links by COB today.

  10. #10 Danny Haszard
    December 3, 2007

    Blood issue at a glance: The Watchtower leadership of the Jehovah’s Witnesses say NO blood, BUT they actually DO ALLOW some blood “fractions”.
    Problem is this variance is so esoteric complicated that by the time special elders appear in the ER with the rule book, the JW patient is at the point of no return,bleeding to death.
    NOW,they blame the hospital staff for not having a “cell saver” machine instead of the Watchtower leaders who are responsible for making the rules.

    I was born a 3rd generation Jehovah’s Witness in 1957 and endured the Watchtower’s no blood commandment with longstanding bleeding Crohn’s disease.The Watchtower leadership expects followers to die for their dogma and many have.The medical staff get blamed and are ‘damned if they do damned if they don’t’.

    In 20 years there will be artificial blood for anyone who chooses it,putting an end to this drama.

    (Some educational links provided below:)
    http://www.ajwrb.org/ Jehovah Witness blood policy reform site
    http://www.towertotruth.net/Articles/blood_transfusions.htm Will you die for a lie?

  11. #11 Schwartz
    December 3, 2007

    Marcus,

    I think if you studied theology from a practical perspective, you’ll find that there are many practical rules mixed in with ethical ones. Over time, the practical rules can easily become dated by changing traditions, economic conditions, and technology where they seem absolutely ridiculous (because they are now).

    However, there are a set of practical rules that appeal to the phsychological nature of people as well. Ritual is good way of dealing with traumatic events (even military training knows this) so some of these things can maintain practicality over time.

    You’ll find that moderate religions will modify their interpretation of scriptures over time (and yes, these are all interpretations) while more fundamentalist people will strictly maintain all of the rules and rituals to the letter.

    Fortunately, although the fundamentalists get a lot of press, the majority is much more moderate.

  12. #12 Travis
    December 4, 2007

    If JW’s wish to remove themselves from the gene pool, let them take a few genes and memes down with them. I feel sad for the loss, but hey, he had a choice.

  13. #13 Tom
    December 4, 2007

    Travis:

    I agree with you 100% for the true believers – anyone stupid enough to refuse a blood transfusion deserves to be removed from the gene pool, but what about the poor sod who’s been brainwashed by his family and his church? He’s been brought up in a world thinking that blood is evil? They are the people we need to educate and protect – they are the people which religion harms.

  14. #14 apy
    December 4, 2007

    JW’s are responsible for the attention the medical community has given to the much superior techniques of bloodless medecine and surgery.

    Do you have any evidence for this?

    From my limited research it seems to me that bloodless surgery was spawned mostly as a result of allergy’s, not religion.

    From the wiki page:

    This expression reflected Dr. Lorenz’s methods for treating patients with noninvasive techniques. His medical practice was a consequence of his severe allergy to carbolic acid routinely used in operating rooms of the era. His condition forced him to become a “dry surgeon”.

    AS well as:

    Bloodless medicine appeals to many doctors because it carries low risk of post-operative infection when compared with procedures requiring blood transfusion. Additionally, it is cost-saving. The cost of blood in the US hovers around $500 a unit, including testing

    matt,
    Do you have any evidence that interest in bloodless surgery has been a direct result of JW’s or simply a useful biproduct (considering Dr. Lorenz died in 1946, long before JW’s even decided blood transfusions were wrong).

  15. #15 CortxVortx
    December 6, 2007

    The problem lies with the fact that transfusions have been practiced without regard to safety.

    Blood is separated by types A, B, AB, and O. It’s further separated by Rh factor. And screened for pathogens. And further subdivided into other categories.

    “Without regard for safety”? Blatant lie.

    — CV

  16. #16 jan
    December 19, 2007

    When Dennis was first admitted to the hospital he said he “trusted his doctors and if all other treatment methods failed, he would consider a transfusion”. Doctors gave 85%-90% recovery rate with chemo/blood. After 2 chemo treatments his body could not do another without blood – but surrounded by JW’s, he opted for no transfusion. Once this decision was made, his spiritual family would not let non-JW’s visit him. One trusted teacher did force her way into his room w/the help of her husband, without JW’s present, and when she asked him why no transfusion he replied “….I know you want me to live, but there are MORE PEOPLE who want me to follow my faith”. This says it all. No choice – too young to make a life a death decision, Dennis always wanted to please his family and fellow “brothers & sisters” of faith. The 70% survival rate happened when he was so close to death that only a blood transfusion would save him – with a transfusion, he had a 70% chance of survival for 5 years. Keep in mind, this happened in 3 short weeks.

  17. #17 HCN
    December 19, 2007

    jan, that is just so sad.

    Now compare that to what parents are willing to do at:
    http://scienceblogs.com/insolence/2007/12/making_lab_rats_out_ones_children_cancer.php

  18. #18 tom sheepandgoats
    February 13, 2008

    apy:

    Do you have any evidence that interest in bloodless surgery has been a direct result of JW’s

    Note this statement from the following University of Pennsylvania School of Medicine: “Originally developed to meet the needs of the Jehovah’s Witness community, bloodless surgery is transfusion-free and is acceptable to Jehovah Witness followers” [third paragraph]

    http://www.eurekalert.org/pub_releases/2007-12/uops-ncf120507.php

    Nobody is saying JW beliefs are the only factor, but clearly they are a factor.

    Also, nobody is saying blood transfusions per se are quackery, reckless, ought to be banned, or anything of the sort. We are not telling medicine what to do. All we are pointing out is that refusal of blood transfusions finds enough empirical support…..it’s not just Bible only…..that we think there are medical grounds on which doctors can try to accommodate our stand. Many of them do, which we appreciate, as it clearly is a specialty.

    Some simply dig in their heels, but we hope more and more will come to view our transfusion stand (based on religious conscience) much as they might a severe allergic reaction that rules out their treatment of first choice.

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