Even though there's no option, we still have choices
Tue, 02/07/2006
“You choose,” my husband was saying to me.
As if we had a choice, I was thinking. It wasn’t like picking out drapes for the living room.
We were with John’s doctor, filling out a form called “Physician Orders for Life-Sustaining Treatment” or POLST. It’s the latest approach to planning ahead for medical emergencies.
Forms like this tip-toe carefully around the word “death.” We have LIVING wills and LIFE-sustaining treatment. Instead of discussing death and dying, we refer to “end of life.”
We’re kidding ourselves, of course. In an eloquent essay about the “Good Death” last year, New York Times writer Robin Marantz Henig observed that the agonizing debate over Terri Schiavo revealed a national belief “that dying is something over which we have control.”
Moreover, our death-denying culture, Henig wrote, “allows us to indulge the fantasy that dying is somehow optional.” And there we were in the doctor’s office, considering options.
SOMETIMES I’VE had no choice about making choices for my husband. Once, when he was unconscious, there was a choice between putting him on a ventilator or letting him die. I chose the ventilator, then made myself stay in the emergency room to watch the procedure so I would fully comprehend what I’d put him through.
More than once in the dozen years since his stroke, John has stared straight into the jaws of death. He’s never blinked, but I do. So occasionally, when he’s especially healthy and believes, like all of us, that he’s going to live forever, I gently insist on a little death talk. If I do have to choose, I need to know exactly what he wants that choice to be. What he wants has changed over the years.
Most of us don’t really know what we want. That, according to University of Michigan researchers, is why most of us don’t have a living will. Even for those who do have one, the document is rarely effective, they conclude in their 2004 report, “Enough: The Failure of the Living Will.”
A few years ago an attorney who was updating my will slipped in “living will” language. It was incomprehensible. I had it removed, opting to give a family member durable power of attorney for health care.
According to the Living Will report, about half of all these documents are written by lawyers; it’s their words, not the clients’. Some 62 percent of the wills are never even passed on to attending physicians.
WITH THE POLST approach, you begin by consulting with your doctor. The form - available at your doctor’s office - is straightforward and clear.
You make decisions in four basic categories: resuscitation, medical interventions such as oxygen and IV fluids, antibiotics, and “artificially” administered fluids and nutrition, such as feeding tubes.
At least one study indicates patient-physician discussions about advance directives are frequently too brief and vague. When John said, “You choose,” he was really saying he needed more specific information, and he received it.
The POLST Form requires periodic review. There’s nothing like illness, hospitalization and even disability to change our minds about life and death decisions, to make us accept life on its own terms.
Before John’s stroke, he probably would have said he’d rather die than live totally paralyzed and unable to speak. No question, the paralysis is a burden and challenge. But life? Life to him is a treasure.
In the end, we don’t have a choice. Yet we do have a lifetime of choices leading up to it.
Mary Koch is caregiver for her husband, John E. Andrist, a stroke survivor. They welcome your comments at P.O. Box 3346, Omak WA 98841, or e-mail marykoch@marykoch.com. Recent columns are on the Internet at www.marykoch.com.