"My Father's Broken Heart," Katy Butler's remarkable account of the last years of her beloved father's life, renders the dynamics of medicine run amok as well as anything I've read.
Jeffrey Butler, a retired Wesleyan University professor, was a healthy 79 year old, until he suffered a severe stoke in 2001. Sadly, his vigorous efforts at rehabilitation yielded little benefit. In 2002 he told Katy he believed his wife, her mother, would have been better off if he had died - "she'd have weeped the weep of a widow...and then she would have been alright."
But when he experienced a painful inguinal hernia, the cardiologist who was asked to clear him for surgery recommended a pacemaker for a slow heartbeat. Katy's father had rejected a similar proposal before the stroke, but now he was no longer able to decide for himself. After a brief discussion with the cardiologist, Katy's mother, concerned about his pain from the hernia, and unaware of alternatives, agreed. The cardiologist did not talk with their beloved primary care physician, who knew the couple well, would have counseled against the implant, and could have suggested a temporary external pacemaker for the surgery.
Jeffrey Butler continued to decline with progressive dementia and blindness. Ultimately his wife, with the full support of their three children, asked to have the pacemaker turned off. There was no doubt that this is what Jeffrey would have wanted.
But the cardiologist who had urged the implant refused, on moral grounds. He later told Katy "it would have been like putting a pillow over your father's head." Even when Jeffrey contracted pneumonia being treated with comfort measures alone, but no antibiotics, the cardiologist's colleague refused to turn off the pacemaker, saying "he might die immediately," which would, of course, had been Jeffrey's wish, had he been able to express it.
The cardiologists, claiming the moral high ground, showed less understanding of patient autonomy and informed consent than my first year Harvard Medical School ethics class did.
I have the privilege of teaching a group of brilliant, committed primary care residents. From that perspective the tragedy of Jeffrey Butler's care is that the conveyor belt of medical technology took over his care without consulting with his own primary care physician. I have no doubt that the cardiologists believed themselves to be doing the right thing for Mr. Butler, even though they weren't. Medicare incentives, alas, richly rewarded the unwanted overtreatment, and the installed pacemaker kept Jeffrey Butler's body alive long after the person he had been was dead.
Last summer the duplicitous opponents of health reform attacked the idea of supporting conversations about patients' wishes for late life care as "death panels." But stories like the one Katy Butler tells about her father shows how the status quo leads to real torture.