Posted by: notdeaddinosaur | February 16, 2010

What’s the Difference?

I have a friend with widely metastatic cancer. He’s been in and out of the hospital recently, along with a stay at “rehab,” after which he became strong enough to return home. I’ve tried calling him, but the word he has put out is that he doesn’t want to see anyone right now. He’s reserving his strength to “fight this disease!” He did leave me a voice mail a few weeks back, thanking me for my message of love and support, closing with the assurance that, “I will beat this thing.”

His oncologist is totally on board with this. My friend is continuing to receive chemotherapy and radiation, complete with their devastating side effects. Recently, he became so weak he had to leave his beloved wife and home to back to the “rehab” facility again, to make up “all the gains he’d made” during his first stay. He’s had multiple conversations with his family about his wishes. Nothing has changed. He doesn’t want to see friends yet, because he’s still fighting. He is adamant that he will win this battle.

But he won’t.

My fear is that his refusal to acknowledge this undeniable fact will end up robbing him of the last part of his life, as he spends it “fighting,” rather than living. There are many people who love him dearly, and while I understand his loathing of the idea of people coming to visit to “say goodbye,” I’m terribly afraid that the next time they gather will be for the funeral. That’s the way he wants it, though.

Armed with the insight from OncRN that “patients don’t want treatment, they want outcomes,” I realized that what my friend really wants is for the disease to be gone and to go back to life as it was. Back to his home and his work; back to his family and his garden; back to watch his grandchildren grow up and dance at their weddings. The oncologist knows (or ought to know) that none of the treatment he has to offer is going to result in that outcome. So he has the choice between trying to help the patient re-align his expectations to make the best use of the rest of his life, or continue to offer “treatment,” tacitly agreeing that the patient’s desired outcome is possible; anything not to undermine the patient’s “hope.” But isn’t it far more important at times like these to redefine “hope” for the patient, as has been so eloquently expressed elsewhere?

This was the context in which this thought occurred to me:

What is the difference between oncologists who never stop treatment, and the alternative/biomed/quacks who push endless, dangerous, uncomfortable (and expensive) treatments on children with autism spectrum disorders?

  • Both of them have patients (or families) who are desperate.
  • Both of them have patients/families who desperately want/want them to get better.
  • None of these patients ever will.
  • Both feed into their patients’/families’ false expectations in the name of “don’t give up hope.”
  • Both believe they are doing the right thing.
  • Many other people have dealt differently with the same situation, finding satisfaction and fulfillment in dealing more realistically with their circumstances.

Some may say that the difference is that autistic children aren’t choosing to undergo useless “biomed” treatments, whereas competent adult cancer patients are, supposedly, fully aware of the pros and cons of the treatments to which they consent. Still, it isn’t really treatment they want; they want a specific outcome. And when no treatment can provide the outcome the patient wants, what good is it doing?

My friend remains fully convinced that the treatments he struggles to tolerate will indeed eliminate his disease and return him to his previous state of health. He clings to that, and refuses to discuss any other outcome of his condition. Not really much different from parents who insist that they can “recover” their autistic child, if only they believe hard enough and pay enough money for scientifically useless treatments. What’s the difference between their doctors?

Maybe not so much.

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