From the Editor
There is widespread agreement that medical care offered at the end of a life ought to accord with the preferences of the person whose life it is, at least if the care requested would not be futile. There is considerable evidence, too, that making care more “patient-centered” in this way would tend to lower the cost of care, for the simple reason that people in those straits often prefer to avoid the most intrusive and therefore most expensive care. So patient-centered care could be a win-win of sorts: there could be a collective benefit of lowering costs along with the individual benefit of conforming care better to what the patient wants. But to what degree should the collective benefit be an express goal of health reform, in light of the fact that a given patient might want whatever intrusive, aggressive interventions stand a chance of prolonging life? This question animates several items in this issue of the Report. In the lead article, Nicole Piemonte and Laura Hermer suggest that the provision in the Affordable Care Act that would have made discussions about end of life care reimbursable under Medicare—the provision that Sarah Palin said would create “death panels” and was eventually removed from the legislation—became the lightning rod it did in part because the ACA sought to combine both potential wins, collective and individual. The ACA aims to save money; health reformers talk up the money-saving potential of clarifying the patient's preferences about end of life care; a provision to promote discussions about the patient's preferences life therefore easily looked like a provision to try to limit end of life care, which sounds like a provision to ration care, which sounds like Gramma might be killed. Plus the provision specified the content of the discussion in a way that made it sound less like a conversation and maybe more like the patient would get ushered into something. (A real conversation might sound more like the exchange recently recounted by Peg Ackerman in “Return of the Hero,” on the Hastings blog “Over 65”—and might not centrally involve a physician.)
Meredith Stark and Joseph Fins raise a related concern in the lead essay. They note that “shared decision-making” tools—mechanisms for eliciting patients' genuine preferences about care—were introduced as a way of improving care (the idea was that shared decision-making combined respect for patient autonomy with the beneficence required of physicians), but somewhere along the way were recognized as also reducing the cost of care, and that now one cannot always be sure which of these is the real goal when a given shared decision-making tool is introduced. It's not clear whether we're listening to patients, and making their interests paramount, or sort of trying to get them to listen to us, and making sure that collective interests are given weight.
In a commentary on Piemonte and Hermer, Thomas Smith and Joann Bodurtha do not back down from the position that the twin goals are compatible. Indeed, they argue that those goals also do not exclude the goal of prolonging life: much of the intrusive care that is meant to prolong life fails at that, once a patient is sick enough, while care that keeps patients comfortable and oriented toward whatever is meaningful in their lives seems to have the effect, perhaps surprisingly, of maintaining or even prolonging life. Thus the threat of cutting life short need not drive a wedge between treating patients as they want and spending less money on them. —GEK▪