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.