Tuesday, August 23, 2011

The Emperor, The Aquarium & other "beach" reads

The Community Ethics Committee, and its current study of medical futility, have done a number on my concept of “summer reading.” Though I’ve snuck in Patti Smith’s “Just Kids,” which inspired a second pass through Bob Dylan’s “Chronicles, Vol. 1,” the book dominating my summer is no one’s idea of a light seasonal read: “The Emperor of All Maladies: A Biography of Cancer.”

I’m not quite finished with this smart and unendingly impressive book by Siddhartha Mukherjee, a cancer physician, researcher and eloquent teller of a quite extraordinary story. And yet I know it to be one I’ll revisit for a long time to come. All that is wonderful and dreadful about medical science is represented on these pages -- inspiring dedication and visionary genius amid frightening stubbornness and wrongheadedness among cancer’s “warriors.” In Mukherjee’s history, the line between scientific vision and delusion is drawn painfully and slowly.

Mukherjee gives short shrift to E. Donnall Thomas, or maybe that’s my bias speaking. Thomas pioneered my daughter’s cure. I’d give him his own chapter.

But “The Emperor of All Maladies” has so much to take in that I find myself closing it and making time for short books and stories. I put it down last week for speed-read of “Death of the Adversary, “ by Hans Keilson, a German Jew and medical doctor who fled in the 1930s to Amsterdam, where he would practice psychotherapy and develop a specialty in treating childhood trauma survivors. Keilson, who died earlier this year at age 101, also wrote powerful works of fiction with unique insight into living through the chaos and trauma of that time. My daughter is an eighth-grader who will study the Holocaust this year, and I’m encouraging her to investigate Keilson. We’ll see.

Amid these books, I’d somehow overlooked “The Aquarium” when June’s double issue of the New Yorker arrived in the mail, and it took a few weeks to resurrect the copy. I searched for it after having been drawn to the story by letters in a subsequent New Yorker regarding its portrayal of end-of-life care.

Aleksandar Hemon has edited the past two editions of “Best European Fiction.” That “The Aquarium” is nonfiction is the hard truth Hemon and his wife and daughter will live with forever. It is the story of the death of their second child to a rare cancer of the brain.

Though my own daughter was cured of her life-threatening illness, much of Hemon’s story is familiar. Especially resonant is the inability of well-intentioned friends to even minimally comprehend what the family was going through. An accountant, after Hemon told him of his daughter’s grave illness, says: “But you look good, and that’s the most important thing!”

“I had a hard time talking to well-wishers and an even harder time listening to them,” Hemon writes. but he and his wife “endured their expressions of sympathy without begrudging them, as they simply didn’t know what else to say.”

In other words, words fail. And yet, Hemon writes, “Words were not failing Teri and me at all. It was not true that there was no way to describe our experience. ... If there was a communication problem, it was that there were too many words, and they were far too heavy and too specific to be inflicted on others.”

But words did fail, not because Hemon couldn’t find the right words to express his thoughts, but because the information contained was too much for most listeners to bear.

In reading “The Aquarium,” I was struck yet again that communication is at the heart of so many doctor-patient disputes. In the CEC’s work, this is especially true when the question is over how much time the patient has left. Sometimes poor communication skills by the doctor are the problem, but sometimes the words are clear, well chosen and empathically delivered, yet still not heard or comprehended. There’s a selectivity to what we hear when the news isn’t good. And there’s a strange, recurring fact in end-of-life dramas in which a patient or family can understand a terminal diagnosis without really grasping that the patient is dying. Words fail, indeed.

Sometimes, the words that fail are meant to speak for God.

“One of the most despicable religious falacies is that suffering is ennobling -- that it is a step on the path to some kind of enlightenment or salvation,” Hemon writes. “Isabel’s suffering and death did nothing for her, or us, or the world. We learned no lessons worth learning; we acquired no experience that could benefit anyone. And Isabel most certainly did not earn ascension to a better place, as there was no better place for her than at home with her family. Without Isabel, Teri and I were left with oceans of love we could no longer dispense; we found ourselves with an excess of time that we used to devote to her; we had to live in a void that could be filled only by Isabel. Her indelible absence is now an organ in our bodies, whose sole function is a continuous secretion of sorrow.”

There are many hard choices but no intractable dispute in Hemon’s tragic recounting. It was clear to Hemon that he and his wife would decide when it was time to stop measures that would keep Isabel alive but do her no therapeutic good.

“The gray-haired doctor turns to me and says, ‘Twelve minutes,’ and I cannot comprehend what he is saying. But then I realize: what he is saying is that Isabel was clinically dead for twelve minutes. Then her heart stops beating again, a young resident is halfheartedly compressing her chest, waiting for us to tell her to stop. We tell her to stop. She stops.”

I’ll carry Hemon’s essay, and the memories invoked by it, through the final chapters of “The Emperor of All Maladies,” and well beyond.