Remember all that flap about “death panels” when the Affordable Care Act was first introduced? It brought to mind images of cold-eyed, white-coated doctors deciding who would live or die based on financial calculations dictated to them by a totalitarian government.
But according to Katy Butler, the author of the recently published Knocking on Heaven’s Door, a memoir of her father’s stroke and meticulously reported critique of our current healthcare system, those images had nothing to do with what was actually being proposed. What critics decried as death panels was the part of healthcare reform that proposed a $200 subsidy for doctors who spent the time to have longer conversations with terminally ill patients about the pros and cons of various life-extending procedures. As it currently stands (since that part of the bill was killed by the bad publicity, which originated with a consultant at the Hudson Institute think tank) doctors are reimbursed $54 for a 15-minute visit with patients on Medicare — hardly time to explore the thorny issue of someone’s imminent mortality. Far easier to recommend an intervention and be done with it. This means doctors are “financially punished,” writes Butler, “if they take the time to explain the case for doing less.”
Butler also notes that the case for doing less is receiving more attention, and there’s an increasing number of medical professionals who are embracing the principles of a movement called “Slow Medicine.” The principles of Slow Medicine originate in the “unglamorous domains [of] geriatrics, palliative care, family medicine and hospice care,” she writes, though they were first articulated under their current banner in 2002 by an Italian cardiologist named Alberto Dolara. (When it comes to living well, all roads lead back to Italy.)
Dolara’s main point was that in the (entirely understandable) eagerness to act to save a patient’s life, too often doctors fail to take the quality of that patient’s life into account. This means the excessive testing, invasive treatment procedures and surgeries, and time spent amid beeping machines in ICU units may demonstrate an ability to cure, but they do not demonstrate a capacity for care — which requires seeing patients as people who may want more from life than simply to be alive. More people on the cusp of life feel this distinction than you might expect. Butler cites a study that polled patients with congestive heart failure, and more than a quarter of them would rather have one day of life in good health than two years of life in their depleted condition. Another study showed that a third of the chronically ill people it polled said they would rather die than live out their lives in nursing homes.
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Slow Medicine and its principles don’t suggest that all advanced treatments are bad or evil. These are heart surgeons who began this movement. They simply propose that such treatments be presented as choices among others, rather than hastily administered as necessities.
Butler herself advocates with such passion for these ideas because her book is also a memoir about caring for her chronically ill father, a former professor of history, whose pacemaker prolonged his extremely difficult life long after a stroke diminished his once-formidable intellectual capacity. This prolonging effectively shaped her mother’s life as his caretaker too — and not for the better. She spends a lot of time considering the discussion that led to the insertion of his pacemaker, which kept his heart beating long after it would’ve stopped naturally, and wondering how things could’ve been different for their family if he’d been allowed to die on his body’s own time.
Words like “death panels” are frightening, and as such, effective at shaping healthcare policy. That said, they’re nowhere near as frightening as a diagnosis for a chronic or a terminal illness, which can make time feel terribly short for something like Slow Medicine. But as Butler’s book makes clear, the time we take to consider carefully the medical interventions we choose for ourselves, and our loved ones, is never wasted. Quality of life can’t be measured the way length of life can; perhaps this is exactly what makes it so precious.
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