I don’t have much to add to this one, as it’s a tragic tale. Shadowfax, a blogging ER doc, relates to us :
This was a young woman, barely out of her teens, who presented with a tumor in her distal femur, by the knee. This was not a new diagnosis — it had first been noted in January or so, and diagnosed as a Primary B-Cell Lymphoma. By now, the tumor was absolutely huge, and she came to the ER in agonizing pain. Her physical exam was just amazing. The poor thing’s knee (or more precisely, the area just above the knee) was entirely consumed by this massive, hard, immobile mass about the size of a soccer ball. She could not move the knee; it was frozen in a mid-flexed position. She hadn’t been able to walk for months. The lower leg was swollen and red due to blood clots, and the worst of the pain she was having seemed due to compression of the nerves passing behind the knee. It was like something you see out of the third world, or historic medical textbooks. I have never seen its like before.
So we got her pain managed, of course, and I sat down to talk to her and her family.
Why had this tumor been allowed to grow so large and painful? If you’re a regular reader of SBM, I bet you know the answer. This patient had been relying on quackery (in this case, the Gerson protocol, immortalized in the quackery propaganda movie The Beautiful Truth):
In a less grave situation I might have laughed and asked “So how’s that working for ya?” As it was, the tears from her only partially-controlled pain took any humor out of the situation. She was very frustrated that the Gerson therapy wasn’t working yet, but she did not perceive this as a failure of the treatment. Her theory was that the severity of her uncontrolled pain was keeping her immune system suppressed and preventing it from working. If, she hoped, she could just get her pain under control, she would finally start to get better.
I spent a lot of time with this young lady. Listening as well as explaining. She was dead set against chemo, which to her mind was equated with the “toxins” which had caused her cancer in the first place. She wrote off the oncologists as pushing chemo “because that’s all they know how to do, and it never works.” She had, in fact, burnt all the bridges with the various oncologists who had treated her, and was now left with only a pain specialist and a primary care doctor trying to do what little they could for her. She was equally frustrated by doctors in general, who “won’t do anything to help me.”
I could see why she felt that way; when a patient refuses the only possible effective treatment, there is not really much we can do to help her.
All too true. The cliche goes that you can lead a horse to water but you can’t make him drink. This is true for every patient; we can’t force our therapies on a mentally competent adult patient. People have the right to make their own choices and to suffer the consequences when their choices are poor.
Just like this woman.
The person primarily at fault is the quack prescribing the treatment, taking advantage of this woman’s fear of chemotherapy. After relating how he arranged for this patient to see another oncologist, who was willing to try to help her despite her baggage and extreme distrust of “conventional” medicine, Shadowfax concludes:
Most woo is harmless — but that’s because most woo is directed at chronic, ill-defined, or otherwise incurable conditions. Think chronic fatigue or fibromyalgia. Wave a magnet at somebody, get them to do a lot of enemas and go on a special diet, and you get to write a book and go on Oprah and collect a lot of money. If the subjects of the “magical thinking medicine” think they are better from the intervention, then so much the better.
But the really pernicious thing about allowing fantasy medical theories and treatments into the mainstream is that when they gain enough credence among the masses, they will tend to be used in place of real medical treatments that work.
Exactly. What’s worse is that, the more woo infiltrates scientific medicine, as it is doing, the harder it is to tell woo from non-woo. Then we ostensibly “science-based” practitioners become the quacks who are only marginally better than the quack who indulges the delusions of a young woman with a potentially curable cancer and thereby leads her into a path of extreme suffering and likely death. I’ve seen it before myself.