Life and death

Here's an end-of-life story for you:

"We got the kind of call we'd feared. Dad had been in declining health for months. Then he fell asleep at the wheel and was in a bad car accident. Three weeks later he was still in a coma. A breathing machine pumped air into his lungs because he could not breathe on his own. The doctors thought his chances of coming out of the coma were slim. They talked with Mom and me about turning off the breathing machine and allowing Dad to die naturally. I felt terrible. I don't think Dad would want to be kept alive like this. But I knew Mom would feel guilty for the rest of her life if we told the doctors to 'pull the plug' while there was still even the slightest hope. We weren't sure what we should do because Dad never told us what he wanted. I really wish we'd talked about this before."

That story strikes a chord with me because our family went through it. In the last weeks of his life, my father was home and suffered one crisis after another, and the kind people of the Visiting Nurses Association helped the family through it all. When it was obvious that the end was no more than hours away, my mom thought maybe we should call in a rescue one last time. But the consensus was that there would be little point. At most, my father could have been "saved" for another day or week of misery. My mother reluctantly agreed, and I know she did feel guilty about it for the rest of her life.

Perhaps at least partly for that reason, my mother made it pretty clear that she did want everything possible done to save her life when the time came. We didn't exactly sit down and have a big family conversation about it -- I suspect that's a tough one for most families -- but she managed to let her feelings be known. We would have been better off if we'd had some guidance in how to approach the subject.

As it happens, there was help available, but we didn't know about it. The story above is the introduction to "Your Life, Your Choices"  (pdf file), a publication of the Veterans Administration that's beeen getting an unfair rap in the last couple of days.  Former Bush Administration official Jim Towey wrote a Wall Street Journal piece about it that led to the document being called the "death book for veterans."

The booklet, Towey noted, includes a worksheet titled "What makes your life worth living" that presents various scenarios, such as being confined to a wheelchair, relying on a feeding tube or being unable to "shake the blues."

Towey compared the wording of the worksheet to a political "push poll" meant to steer readers to a predetermined conclusion.

"This hurry-up-and-die message is clear and unconscionable," wrote Towey, who noted that the Bush administration had suspended use of the document but that it has been "resuscitated" by the Obama White House.

And Republican-turned-Democrat Arlen Specter has jumped in, too, asking the Department of Veterans Affairs to consider suspending use of the document. In doing so, he makes a pretty remarkable (to me, anyway) admission:

Specter said in an interview yesterday that he had not read the booklet but was disturbed by what he had gleaned thus far. "I heard an inference that people might be inappropriately influenced to withhold medical treatment," he said.

Well, I have read it, and it shouldn't be a hardship for anybody else to read it, even a busy senator who has lots of people to help him "glean" things. It's not a thousand-plus pages of government gobbledygook, afterr all. It's a mere 54 pages of clear, direct English. I don't know -- maybe some VA bureaucrats have used the document to nudge some veterans into the giving-up mode, but I really don't see how the document itself can be interpreted as doing that. It plainly states, in several places and in several ways, that people need to decide, while they still can, what they want done for and to them as the end approaches, and let that decision be known now to loved ones so there's no second-guessing.

Don't get me wrong. I'm still opposed to the government being any more involved than it already is in health care, and anybody who isn't scared about what the lamebrains in Congress and the administration might come up with just isn't paying attention. But that's no reason to scrap something that's been around for more than a decade and can be of great help to families.

Maybe I'm too generous or not critical enough in my interpretation. Let me know what you think. But at least do what Specter hasn't and read the damn thing first.