Tuesday, January 15, 2008

Illness as More than Metaphor

I wanted to link to David Rieff's remarkable New York Times Magazine article about his mother Susan Sontag's third and final battle with cancer. It's a biographical narrative, but also an investigation. How do oncologists do what they do? Why do they what to do? Sontag's capacity to endure pain, but her fierce refusal to accept her own mortality, haunts me.

I've often thought about these lines, as I face choices and my doctors attempt (or not) to guide me through them:

Dr. Stephen Nimer, my mother's principal doctor, heads the division of hematologic oncology at Memorial Sloan-Kettering and is also one of America's foremost researchers in the fundamental biology of leukemia. As he explained it to me: "The fact is that people are never as educated as the doctor. You have to figure out something about the patient" -- by which he meant something that takes both patient and physician beyond the profound, frustrating and often infantilizing asymmetry between the patient's ability to comprehend the choices to be made and the doctor's.

Still, the doctor's task here is not impossible. As Nimer put it: "There are risk takers and risk-averse. There are those who say, you know: 'I'm 70 years old. If I get another four or five months, that would be fine.' Others say, 'You do everything you can to save my life.' Then it's easy. You can go straight into a discussion of what a patient wants."

For Nimer, as for Jerome Groopman, the ethical challenge, vital for a doctor to recognize and impossible (and ethically undesirable) to deal with formulaically, comes not with the 30 percent of patients Nimer estimates know for certain whether they want aggressive treatment or not, but with the "undecided" 70 percent in the middle. As Nimer told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. "There are ways to say things," he said. "'This is your only hope.' Or you could say, 'Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you.' So I'm pretty confident I can persuade people." Groopman, in his clinical practice with patients like my mother, patients for whom, statistically, the prognosis is terrible, at times begins by saying, "There is a very small chance, but it comes with tremendous cost."

At some point, I'll share observations about how my various doctors have framed issues for me in both helpful and patronizing ways.

Bonus: My search for the original article turned up this Jan. 6, 2008 Los Angeles Times book review by Thomas Lynch. Rieff expanded his magazine article into a recently published book, Swimming in a Sea of Death. The full review is here (registration possibly required). Lynch's reaction to these lines from Rieff struck me:

"For my mother, whose pleasure in her own body -- never secure -- had been irretrievably wrecked by her breast cancer surgery, consciousness was finally all that mattered. I believe that if she had been offered the possibility of an immortality that consisted of nothing but consciousness, that is, of continuing indefinitely to know what was going on, even if it was the science-fiction immortality of the disembodied head, she would have accepted it with relief and gratitude -- perhaps even with appetite."

Just such an immortality of disembodied consciousness -- "a soul," some call it -- is the consolation of believers.