WASHINGTON — When Congress made its foolish 2005 foray into the heartbreaking case of Terri Schiavo, the Florida woman kept alive for years in a vegetative state, I called my brother to reiterate my end-of-life directives. “Don’t let Mom interfere,” I told him sternly, knowing that parents can be irrational about letting go of a dying child.
My mother, however, is clear-eyed about her own demise. She, too, has assigned to my brother her medical care power of attorney, giving him legally-protected decision-making authority should she become too ill to issue instructions to a doctor.
Apparently, my mother and I are unusual. Though the certainty of death is one of the few things shared by every human, we tend to put off thinking about it. According to the Pew Research Center, only 29 percent of Americans reported having living wills in a 2006 poll. Even fewer have gone as far as my mother and I — appointing a health care proxy.
Oddly, a loud and ill-informed band of activists has organized to make sure that Americans continue to procrastinate about end-of-life directives. In what has to be one of the strangest political battles fought in modern times, a motley assortment of Obama-haters, rightwing conspiracy theorists and Republican politicians have joined to ensure that more families struggle through painful Schiavo-like situations.
You may remember the infamous “death panels” fabrication, which reverberated through the political landscape in 2009. It was a falsehood jerry-rigged to a perfectly sane proposal — that Medicare pay doctors to ask patients a few questions: Have you thought about end-of-life directives? Do you want a living will?
The policy sought to take advantage of the great weakness of our health care system: it pays doctors for procedures, not outcomes. Given that, doctors would be more likely to raise the subject with patients if they were paid for the time they spent. If experience is any guide, patients are less likely to bring it up themselves. But any patient’s participation would have been purely voluntary. No one would have been forced to have the conversation.
From that thoughtful policy change, Sarah Palin and others spread the “death panels” lie, persuading millions of Americans that the federal government would empanel bureaucrats to decide when to “pull the plug on Granny.”
Because the falsehood proved so powerful, Democrats eliminated the end-of-life counseling provision from the health care reform bill passed last March. Medicare administrator Donald Berwick tried to resurrect the provision through a
directive from his office late last year, but he was overruled recently by Obama administration officials who feared more political controversy.
How sad. The irony is this: A failure to prepare for the inevitability of death ensures that doctors, nurses and hospital administrators will end up making end-of-life decisions for countless terminally ill patients. If patients feared losing their autonomy — the right to make a highly-charged and personal decision for themselves — they should have welcomed the new Medicare initiative. It makes sense to confront those matters while you’re still healthy enough to think clearly.
According to research published in the British Medical Journal, “Advance care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives.” The research only confirms what common sense suggests.
When my father learned he had colon cancer— he was only 57 — he didn’t have much time to think about whether he wanted doctors to pursue extraordinary measures to keep him alive. His cancer had metastasized by the time it was discovered. He was dead seven weeks after diagnosis.
But he was fully cognizant — clear-headed and alert — for most of those final days, and he used the time wisely and well. He wrapped up duties at the church where he had served as a deacon for decades. He said good-bye to his children.
And he told my mother in no uncertain terms that he was ready to face the end. He wanted no extraordinary interventions. “Put me in a blue casket,” he said.
It was hard enough to lay my father to rest under those circumstances. I simply cannot imagine how painful it would have been if he been too sick to tell us how he wanted to die.