Cancer treatment: when doctors don't pick a course

Tuesday, August 12, 2014

We had spent the day peering out at the snow on the ground from the 7th floor hospital window.  I had been watching the flakes drop and calculating whether or not I would be able to drive home or whether I'd be stuck in again that night.  I spent a lot of time contemplating whether I could really request to "work remotely" another day in a row.  And yet, all I really felt like doing was crawling into a ball on the couch beside A's bed and just freezing myself there in place until his cancer treatment ended.

There were weeks where my entire body felt like lead.  It wasn't just the cancer.  It was the responsibility.  Our doctor had given us a choice between a bone-marrow transplant and continuing our chemo course.  He would not advise one way or the other.  If a bone-marrow transplant is successful, the leukemia will not come back, but it may not be successful and you'll be stuck with transplant complications.  Transplant complications give you about the same odds of surviving that you have with leukemia, etc. etc.

"What would you do?" we asked our doctor, the person with a medical degree.  He couldn't say, he was just explaining the options.  "I brought your case up during the transplant team meeting and the team was evenly split," our doctor explained.  As an afterthought, he added, "But, the hospital makes a lot more money doing transplants than just regular chemo."  There's some brutal honesty.

I spent nights reading the Journal of Hematology and Oncology, scouring past issues for outcomes in transplants as opposed to A's chemo regimen.

There was recently a good article in the NYT about the treatment choices one has to make when dealing with cancer and how the patient empowerment movement often leads to doctors who hesitate to give any sort of advice.  I sympathize with the writer's concerns.  Maybe doctors should have a recommendation.  How do you expect a stressed out patient to acquire the medical knowledge to make an informed treatment decision.

I was complaining about the lack of direction to another patient who had our same doctor and had just completed his transplant.  "Yes," the other patient said, "But, you know he's being sued, right?  He told a former patient, who had no other treatment option, to elect a transplant.  That patient were to a hospital in Minnesota, he didn't have the transplant here even.  He died during the transplant and the parents are suing, saying that Dr. A didn't inform them that transplants sometimes cause death."

Of course the transplants can cause death.  And in the case of the individual filing the lawsuit, that particular individual had a type of leukemia that will kill you without transplant.  Everybody transplants.

I thought of the lawsuit, the responsibility, and Dr. A the next night as I was pouring over the literature.  Maybe the decision is just about luck and the doctor can't take responsibility for making a random guess.  We elected not to transplant and I think that was smart.

I hope I never have to take responsibility for hearing that it wasn't.

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