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That discussion you’d rather avoid… 17 January 2010

Posted by magicdufflepud in Uncategorized.
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Reading through the Times’s “Week in Review” this afternoon, I came across an article by Denise Grady I’d missed on Monday, an exploration of doctors’ end-of-life discussions with patients. You get to the heart of the issue fairly quickly:

Guidelines for doctors say the discussion should begin when a patient has a year or less to live. That way, patients and their families can plan whether they want to do everything possible to stay alive, or to avoid respirators, resuscitation, additional chemotherapy and the web of tubes, needles, pumps and other machines that often accompany death in the hospital.

Grady goes on to point out, however, that most MDs eschew these guidelines and the hard questions they require in favor of mollifying patients with tangential information (“your treatment regime involves x, y, z”) or avoiding the subject all together until it appears that death is imminent.

Over the course of my father’s own, unsuccessful, battle with cancer, I don’t recall that we ever got around to chatting about these sorts of things, and instead found ourselves at a loss for what do when he died unexpectedly in the hospital — without a will. Yes, he and my mother had planned on laying out everything in advance, but the exigencies of his illness intervened in that last month, leaving those hard questions unanswered.

In fact, in the six-month interim between Dad’s terminal diagnosis and his death, death itself never came up. Euphemism obscured the inevitability of it. We were going to “circle the wagons” or “dot the i’s and cross the t’s,” as if the family were closing on a house. Never once did anyone in an official capacity say and ask, “You are going to die. How would you like to spend your remaining time on Earth?”

The chemo regimes were a given, and every time my father arrived home from a visit to oncologist, he’d carry with him a new tome on the various cocktails which, according to the 5-year morbidity charts I’d been reading, might prolong his life another month. But it was on the government’s dime, so why not spend $20,000 a treatment? When Avastin and company failed, the questions still lay buried, this time under a mound of new information on Erbitux and its side effects that, frankly, seemed worse than the cancer itself.

I’m not angry that the oncologist never forced the issue of Dad’s terminal illness–I had already come to terms with mortality on my own–but rather that the culture surrounding cancer makes such discussions taboo. So much of the self-help literature, of which I’ve admittedly read very little, assumes that every cancer patient can win the fight, that indeed there is a fight to be won at all. And I think it’s just that assumption that makes it so difficult for a doctor to sit down with a patient like my father and say, “You will lose. This is not a question of whether but of when.” As Americans, we reassure ourselves with the presumption of individual agency. But by extension, that means terminal diseases represent just another obstacle to overcome: if the victim were stronger or more determined, she’d win.

If that’s what we believe, then, can we really expect our doctors quash any hope we may have, right from the get go? I think not, and that’s ashame. We’d do well to acknowledge that mortality is not simply a matter of willpower. To accept death is not to deny a love of life.

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