June 24, 2010 Liz Borkowski, MPH 0Comment

If you haven’t already, go read Katy Butler’s powerful New York Times Magazine piece about her aging father’s years of decline and the hard decisions she and her mother had to make about his care. Butler’s father suffered a stroke at age 79, and she writes of its effect:

His stroke devastated two lives. The day before, my mother was an upper-middle-class housewife who practiced calligraphy in her spare time. Afterward, she was one of tens of millions of people in America, most of them women, who help care for an older family member. … Even though a capable woman was hired to give my dad showers, my 77-year-old mother found herself on duty more than 80 hours a week. Her blood pressure rose and her weight fell. On a routine visit to [her internist] Dr. Fales, she burst into tears. She was put on sleeping pills and antidepressants.

My father said he came to believe that she would have been better off if he had died. “She’d have weeped the weep of a widow,” he told me in his garbled, poststroke speech, on a walk we took together in the fall of 2002. “And then she would have been all right.” It was hard to tell which of them was suffering more.

As we shuffled through the fallen leaves that day, I thought of my father’s father, Ernest Butler. He was 79 when he died in 1965, before pacemakers, implanted cardiac defibrillators, stents and replacement heart valves routinely staved off death among the very old. After completing some long-unfinished chairs, he cleaned his woodshop, had a heart attack and died two days later in a plain hospital bed. As I held my dad’s soft, mottled hand, I vainly wished him a similar merciful death.

Butler’s father got a pacemaker so he could have the hernia operation he needed, but it kept him alive long past the point that he would have wanted to live. Butler’s family should have been able to have an in-depth conversation with their trusted family doctor about options and implications, but Medicare’s fee structure doesn’t encourage such planning – and, Butler points out, the provision that would have improved Medicare coverage of these important conversations was incorrectly demonized as funding “death panels” and was dropped from the healthcare legislation.

Different people will make different choices about how they live and die; what’s so disturbing here is that Butler’s mother didn’t understand the choice she was making when she agreed to the pacemaker for her husband. The essay is both a critique of our fee-for-service medical system and a moving portrait of a family facing heartbreaking circumstances. Countless other families face these kinds of circumstances every day – and, as Butler points out, family-member caregivers face enormous demands and pressures, which can compromise their health (physical and mental) in return.

Butler provides a powerful illustration of what we’re missing by not having a system that encourages doctors to develop relationships with their patients, understand their wishes and circumstances, and have difficult, in-depth conversations with them. Read the whole thing here.

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