Bring back the death panel

Carol Luers EymanAs a soldier during World War II, Katy Butler’s father lost his left arm to a German shell in Italy.

He lost his dignity to a stroke in 2001. And his dignity eluded him until he died in 2007.

As Katy recounts in Knocking on Heaven’s Door, soon after the stroke a well-intentioned physical therapist taught Jeff Butler water exercises that led to a hernia. Without prompt surgery, it would become gangrenous.

Knocking on Heaven's Door

Click the graphic to reserve “Knocking on Heaven’s Door” by Katy Butler, available at the library in hardcover and large print.

But Jeff’s 80-year-old heart needed a pacemaker installed before he could tolerate the operation.

In the heat of the moment, his family agreed to it.

That was when the death panel should have intervened.

“Death panel” was an inflammatory term tossed around during the health-care reform debate a few years ago. It’s what opponents said we’d face if Medicare was allowed to pay doctors $200 to discuss end of life planning with patients and their families.

Installing Jeff’s pacemaker seemed humane at the time. But the family wasn’t aware that it could keep him alive until it was inhumane to let him live, or that if they withdrew permission for the device they would be fought tooth and nail by the medical establishment–two things they might have learned, if they’d had access to a “death panel.”

The human side of the story
Before opening Knocking on Heaven’s Door I already “knew” Katy Butler, having heard her interviewed on The Diane Rehm Show. As I read I became enmeshed in her family’s tangle of frictions and resentments, as well as their love, as she masterfully chronicled the human side of their story. But as disturbing to me were the sociological, political, and economic morals of her tale.

Katy Butler continually lays out Medicare’s perverse financial incentives, juxtaposing what the government was willing to pay for life-lengthening interventions and how much less it was willing to pay for allowing him a natural death. Thousands of dollars to the cardiologist to implant the pacemaker; next to nothing if the doctor instead spent time explaining alternative, palliative treatments–treatments Jeff and his family likely would have chosen and that would have saved them all years of anguish.

Medical progress doesn’t necessarily reduce suffering, as Katy explains:

“Each medical advance that fixes the body without helping the mind increases widespread survival into extreme old age and fuels the dementia epidemic . . . The democratization of longevity, which amplified the dementia epidemic, is also responsible for the caregiving crisis.” (p. 140)

And, she points out, caregiving contributes to economic inequality: People hang on to life, often beyond their own or their families’ wishes, requiring long-term care, paid for with the inheritances that could have helped their descendants keep a foot in the middle class. Or, if the family members provide the care themselves, they suffer economically from lost earnings as they give up their paid jobs.

Although truths like these may sound cruel, in Katy Butler’s case, bringing them out of the shadows is a final demonstration of love for the father she adored.

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About Carol Luers Eyman

Carol Luers Eyman is the outreach and community services coordinator at the Nashua Public Library. After graduating from Kirkland College, she earned a master’s of education and a certificate in technical communication from the University of Massachusetts.

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