I WAS TRYING to think of a headline that didn’t involve the word death, so that people would read this post. Death is a hard sell. No one wants to face it, so we have a whole culture of denial—including the medical profession, according to “Letting Go,” Atul Gawande’s wonderful and disturbing article in the August 2 New Yorker. He talks about the difficulties and rewards of doctors having frank end-of-life discussions with terminal patients and their families (instead of throwing yet another almost certainly useless treatment at the disease). In the absence of such candor, people are often tubed, tortured, and wired in the intensive care unit almost until their dying hour, with no peace, no real contact with loved ones, no life.
The point is that until you are dead, you are alive. The hospice system, in which I have been a volunteer—and in which my mother died—treats clients and their families tenderly. It isn’t the usual let’s-go-in-and-fix-it medical mentality; the emphasis is on comfort, choice, meaning, support. Right now, unfortunately, patients have to choose between hospice (palliative or “comfort” care only) and possibly life-prolonging interventions; we ought to be able to have both. Actually, any patient, regardless of her or his prognosis, should be able to have both.
The hospice system is woefully underused in the New York area (of all Medicare patient deaths, only 13 percent occur in a hospice program in the city and 23 percent in the state, as opposed to 37 percent nationwide). This may change under a recent New York State law that mandates end-of-life discussions between doctor and patient with respect to the available options, including pain management and hospice (see Jane Brody’s column, “Frank Talk About Care at Life’s End,” New York Times, August 24). Something similar was originally part of the federal health-care package, but it was withdrawn after having been labeled a “death panel” by conservatives.
This is the most loaded of subjects. We’re scared. We’re stubbornly and laudably hooked on the value of all human life and want doctors to fight like blazes to save us; the idea of anyone being “too old” or “too sick” to treat is anathema. And yet, in some cases—maybe in most cases—we come to a point that there may be nothing left to try, medically speaking. Improving the quality of the life that remains then becomes a wiser choice than struggling fruitlessly to extend it. In fact, research suggests that patients live longer with hospice care than without it.
I, too, turn away. I know that going intelligently into “that good night” means taking charge of my own death, so with the best intentions I ordered the book Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End. But have I cracked it? Not yet.