values in health regulation

Over the past few decades, regulators have tried to base more of their decisions on objective economic grounds, like benefit-cost analysis. In the environmental field, Douglas A. Kysar’s recent book Regulating From Nowhere: Environmental Law and the Search for Objectivity argues that such tools can obscure (and sometimes defeat) the real purposes of regulation. A recent story about Medicare’s pacemaker policies raises some new, and uncomfortable, questions about the limits of economic analysis in health care as well.

Katy Butler recently authored a heart-rending account of her father’s decline (and her mother’s near-exhaustion as a caregiver) in the New York Times Magazine. Her father’s stroke changed both his and Butler’s mother’s lives:

The day before [the stroke], 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.

The story of what happens next is long and complex, but for health policy makers the nub comes down to a decision the family had to make about whether to implant a permanent pacemaker when her father needed surgery to repair a hernia:

[T]he cardiologist, John Rogan, refused to clear my dad for surgery unless he received a pacemaker. . .. The decision fell to my mother — anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes. . . .

[If my father’s primary care physician, Dr. Fales, had] had the chance to sit down with my parents, he could have explained that the pacemaker’s battery would last 10 years and asked whether my father wanted to live to be 89 in his nearly mute and dependent state. He could have discussed the option of using a temporary external pacemaker that, I later learned, could have seen my dad safely through surgery. But my mother never consulted Fales. And the system would have effectively penalized him if she had. Medicare would have paid him a standard office-visit rate of $54 for what would undoubtedly have been a long meeting — and nothing for phone calls to work out a plan with Rogan and the surgeon.

Medicare has made minor improvements since then, and in the House version of the health care reform bill debated last year, much better payments for such conversations were included. But after the provision was distorted as reimbursement for “death panels,” it was dropped. In my father’s case, there was only a brief informed-consent process, covering the boilerplate risks of minor surgery, handled by the general surgeon.

Butler’s family’s situation was clearly a troubling one. I do not agree with her harsher critics, who charge the New York Times has used her story to promote its own political agenda of health care cost cutting. But I was also troubled by Butler’s quoting the following studies:

In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state.

I have not experienced “advanced heart failure,” but I know people who do, and it’s inconceivable to me that they would trade a day of “perfect health” for two months, much less two years, of stasis. Moreover, as Alasdair MacIntyre argues in his book Dependent Rational Animals, caring for others and being dependent are essential, important human experiences. As any critic of QALYs knows, studies like these might be used within the regulatory process to mirror disturbing aspects of the budget process. That process, Timothy Westmoreland demonstrates, “systemically favors policies that let sick people die rather than incur future government-financed health costs” arising out of treated individuals’ increased life expectancy. (We saw the same dynamic emerge in the battles over health reform in 2009.)

As I read Butler’s piece, I kept wishing that society had done more (perhaps along the lines of Britain’s Social Care programs) to help her family. Technological innovation is generating new burdens, worries, and ethical dilemmas for patients and their families. Health care finance is an inherently ideologically charged field.

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  1. Pingback: values in health regulation | theParetoCommons | health

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