What is the responsibility of the health care team with patients who refuse evidence-based medicine?

I'm a day late in recommending this, but I encourage all who are interested in alternative medicine for cancer to spend the time it takes to get through Orac's heartwrenching documentation of the case of a young breast cancer patient who is likely to die in the very near future, through no fault of medicine.

The bottom line: likely curative therapy (i.e., "upwards of 93% long term survival with proper surgery and adjuvant chemotherapy and/or hormonal therapy") was refused by a young woman with a small, treatable, breast mass, only to have her lack of success with alternative therapies bring her back to her original medical team, with a much larger mass and metastatic disease.

The kicker: the patient still refuses conventional therapy.

The tormented discussion of the medical team follows, including all of the "what ifs?" and a frank discussion of patient autonomy and where the responsibility of the medical team ends when a patient refuses therapy.

I am still bewildered as to why the patient came back to the medical team with her advanced disease only to tell them that she is still refusing treatment, but the admirable attitude of Orac is one that is shared by all of my surgical, medical, and radiation oncology colleagues:

Whatever the case, in situations like this, no matter how frustrated and powerless we feel, all we can do as doctors is to be there, ready to help and nonjudgmental as possible--and hope that when and if the patient comes back there is still something we can do.

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I just don't understand this attitude. Maybe it's seeing the advances in heart care as every male on my dad's side has had a heart attack. Maybe it's having a cousin who had polio and watching her surgery after surgery. Maybe it's having a family who tells stories about what happens including the hospital stories. It may be many things about my upbringing, but going with the medical field may not always suceed, but that gives a better chance than any of the alternatives.

The sad part is that while many of the alternative medical practitioners are sincerely trying to help they also, in my experience, substitute anecdote for evidence and have very little to no understanding of scientific procedure. I remember talking to one practitioner of "healing touch" who said she was working on a scientific paper about her results and I asked how she was doing the double blind study that would produce some hard evidence. She had no idea of what it was and, after I explained, said that double blind studies weren't necessary because it worked.

We would be on much stronger ground if our so-called "evidence based" medicine was as evidence based as you imply. As an arch protagonist of evidence based medicine, I must say that we ourselves have done more to undermine what we do than an army of quacks could ever have achieved.

See
http://www.aaas.org/spp/sfrl/per/per46.pdf
and
http://www.scientific-misconduct.blogspot.com/

It is no wonder that our patients don't trust us when we talk about "evidence".