The issues beyond right-to-die
Never say never: That seemed to be the lesson last week when brain-damaged fireman Donald Herbert asked to see his wife, reawakening in a New York nursing home after almost 10 years of silence. That brought to mind my friend Fred, who recently made a triumphant return home from the hospital, where he spent the better part of the past year after a terrible accident. In early months, it seemed certain my friend would die from his injuries. But after a long, deep coma, he moved an eye, then a thumb. By winter he could "accidentally" clip his therapist with the wheelchair. By March Madness, he celebrated his alma mater's wins by singing his college fight song.Skip to next paragraph
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Surely these "impossible" recoveries happen often, most of them too common, perhaps, to draw media attention from the more dramatic events of the day. But people notice that the recoveries aren't all that impossible.
It might have been natural, for example, to assume that those rushing to file living wills after Terri Schiavo's death, March 31, wanted to avoid being kept alive indefinitely in a physical condition like hers. But, in fact, they were equally concerned about guarding their chances for a "miracle."
Thomas Burke, a suburban Philadelphia estate planning attorney, says very old people quickly move down the standard living will checklist, ruling out potential medical interventions: Feeding tube? No. Kidney dialysis? No. The middle aged, on the other hand, want nuance. "Yes, there's a fear of being kept alive," Mr. Burke explains of the baby boomers. "But among a lot of them - among all of them, really - there's also a fear that things would be terminated too early."
Perhaps the more acceptable fear - no, the honorable fear - reflected by the move toward the living will is the fear of being a "burden." This is surely the most loathed condition in our era of the fit, beautiful, and self-sufficient. Who could ever submit voluntarily to an existence that's all take and no give? And so it has evolved, almost without question, that we've embraced this "don't want to be a burden" idea as valid - that if you're potentially needy you want to make your exit posthaste.
I've noticed that some people take more easily than others to the caretaker role. Some get a tangible joy washing the hair of the bedridden, providing fresh sheets, putting a little lipstick on another and then holding up the hand mirror. Others come to the task with much more difficulty. Some people have more time to care, some have more money.
But few who have gone the distance with serious illness would say that the experience didn't open them to a quality of relationship they never knew existed. Few haven't found themselves changed on the most basic level by the process, haven't become different - a better person, if you will - than they'd thought possible previously. And who, exactly, is the "giver" in such situations anyhow? Don't those who do the burdening themselves serve by allowing another the opportunity to give?
To expect anyone to embrace such a situation trivializes the excruciating pain that comes with lost dreams and intolerable demands. That said, people who've been there know well that the burdenhood model misrepresents a reality that often allows - if fleetingly - for physical and spiritual triumph.
In the end, who can describe what is necessary for a "good" life, what constitutes meaning or potential or worth? Even Terri Schiavo - though she never had the chance to awaken like Donald Herbert, or go home like Fred - surely didn't take from society in vain. The very suggestion that she had no purpose was itself purpose enough to ignite unprecedented debate about life's meaning.
That debate shouldn't end privately, in the lawyer's office. In the march to contain health-care costs, protocols from insurance companies or government entities will likely curtail for our children the freedoms that this generation wisely seeks to retain through our living wills. Do we codify, for example, the current standard that two doctors - however well trained - can accurately certify someone as "terminal"? Should they also be expected to pronounce a firefighter's coma permanent, a friend's injury fatal, a vegetative woman's experience meaningless? Do we continue in lock step behind the convenient premise that the sick are a burden?
Such issues extend far beyond the narrow discipline of medicine into the very meaning of life, and there is shortsightedness in expecting the healthcare industry to make end-of-life policy. Thus the need to press the debate. After all, most of us have seen too many modern-day Lazaruses, watched too many lives made great by impossible medical challenges, to believe that "protocol" should measure the quality of our lives, or, finally, dictate the number of our days.
• Mary Beth McCauley is a journalist and a past winner of the Religion Newswriters Association Supple Award for writer of the year.