narrative medicine · news

The ethics of Phase III

New Drugs Stir Debate on Rules of Clinical Trials.

This article makes me conflicted.

On the one hand, there is the necessity of randomized trials in the drug accreditation process.  On the other, the agony — which I’m sure every physician and patient who has participated in these trials has felt — of the placebo arm.  The only difference between this case and scores of others is the cousin angle.

(I wonder, if this new drug is so greatly superior to the standard of care, can’t the trial be halted early and the drug made available? Isn’t that what happened in the trial of AZT?)

As a matter of fact, the writer plays such a loud violin that I am even more inclined to support the randomization.  This is always the problem with illness narratives — the tendency toward sentimentality and the pure goodness of the dying figure.

I had this patient once (as she launches into her own second-hand illness narrative).  He had a particularly ugly cancer, and he was going to die of it. He remained remarkably lucid throughout the time I cared for him, and we chatted a lot.  He was worried about his rent. He absolutely hated the wrist splint the occupational therapist gave him — “It looks like a woman’s shoe!” the constant refrain.  (It looked like a wrist splint, but whatever.)  Once he got mad at me for saying, “I know how you feel.” More than once, he cried.

He was an ordinary, kind of lonely, guy, trying to wrap his head around a very bad disease.  His diagnosis didn’t make him angelic.  He was very religious, and I’m sure he gained strength from that, but if he received any pearls of wisdom from God, he never said.  Never any Wildean quips (“Either that wallpaper goes or I do”).  Just some guy, like any of a hundred older guys I pass in a week at the grocery store, on the subway, in the park.

You see what I mean? I’m trying to tell this man’s story authentically, and still I’ve sentimentalized him into an Everyman. Time to start again.

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