Bryan Castañeda, who lives in Southern California, told me this:
The law firm I work at specializes in toxic torts. We represent people who have been occupationally exposed to chemicals and are now sick, dying, or dead. Most of our clients have been exposed to benzene and developed some kind of leukemia. We sponsor various leukemia charities, walks, and other events. [On January 21, 2012] in Woodland Hills, CA, the Leukemia & Lymphoma Society held its first annual Blood Cancer Conference. Although the speakers were mainly doctors, it was a conference meant for laymen. The chair was an oncologist from UCLA Medical Center.
After introductory remarks and the keynote speaker, there were several breakout sessions. I attended a session on acute lymphoblastic leukemia and acute myeloid leukemia. The speaker was [Dr. Ravi Bhatia,] a doctor specializing in leukemia from City of Hope in Duarte, CA. His talk was almost exclusively about new drugs and clinical trials. Very dry and dull. Things got more interesting during the question period. At one point, [Dr. Bhatia] told an attendee not to experiment on his own because “you won’t learn anything and others won’t learn from it, either.”
I would have liked to ask Dr. Bhatia three questions:
1. What’s the basis for this extreme claim (“you won’t learn anything and others won’t learn from it”)? Ben Williams, a psychology professor at UC San Diego, wrote a whole book (Surviving “Terminal” Cancer, 2002) about taking an active approach when faced with a very serious disease (in his case, brain cancer). Likewise, the website Patients Like Me is devoted to (among other things) learning from the experimentation of its members. Lots of forums related to various illnesses spread what one person learns to others. MedHelp has many forums devoted to sharing knowledge.
2. What’s so bad about “learning nothing”? Why should that outcome stop one from trying to learn? It doesn’t seem like a good enough reason.
3. Do you have a bias here? In other words, what do you want? Do you prefer that your patients not self= experiment? Doctors may prefer that their patients not experiment for their (the doctors’) own selfish reasons. When a patient self-experiments, it makes their doctor’s job more complicated and makes the doctor less important. If Dr. Bhatia is biased (he wants a certain outcome), it may bias his assessment of the evidence.
Wrt brain cancer, Thomas Seyfried has written a number of journal articles showing the efficacy of a ketogenic diet for that condition when little else works. So it appears that “taking an active approach” could be literally a lifesaver.
I suspect this doctor does not want informed patients who might question the “orders.”
” … a doctor … new drugs …”
Those four words say all I need to know before I head for the exit.
It is that kind of mindset that has seriously damaged the credibility of the medical profession and the overall system of medical care. This is leading more and more people to conclude that the term “health care” is a gross misnomer, in that the health of the individual is largely irrelevant. All too often, it’s mostly about money and conflicts of interest.
I live very close to an ‘integrative’ medical centre (medical doctors that also practice so-called ‘fringe’ medicine, like intravenous vit C). One of these doctors was the subject of a documentary here because she came out and claimed that intravenous vitamin C can save lives in cases of viral infection. She presented a case of a man that was literally hours from death from the Swine Flu and recovered after his family paid privately for her to administer intravenous vit C. They did this against the advice of the doctors that were watching him die.
The program interviewed doctors from the Auckland hospital and none of them had tried it, they just kept repeating ‘there is no science behind it’ and that they wouldn’t use it even when asked because it ‘would give the family false hope’.
That last statement I found… astounding. You have a terminal patient, the family has NO hope left and you are scared to try what they ask in case it gives them some?? There is no logic. So, the patient dies and the family is left forever wondering what would have happened if they ‘had’ tried it. People should be allowed, encouraged to try anything they think will help them. In the case of terminal illness, even a bit of placebo effect might be a good thing (as a Psych., I’m sure you know that placebo effect is sometimes biochemically measurable).
It makes me annoyed when I read about doctors beating down self-experimentation. Oh, and that’s on top of the way that environmental contamination already makes my blood boil. ..
I agree. And I would also say: How do these doctors know the hope is “false”? If the idea is untested, as they say, why are they sure it is wrong? That makes no sense.
Interesting comment from the lawyer and links between benzine and leukemias. I’m currently looking out for evidence of correlations between leukemias and osteoporosis medication.
Maybe he should tell Terry Wahls that “self” experimentation won’t allow you or anyone else to “learn from it.” I guess he thinks she should have just stayed in her wheelchair.
good point!