Yesterday’s Washington Post “Business of Dying” article is a sobering account of how little information is available on the quality—or lack of quality—of hospice organizations.  Almost no information on quality is available to patients and families in need of hospice care.  They’re left to rely on word of mouth and recommendations from friends and neighbors.

Three factors underscore the heartbreak of this situation.  First, the hospice decision by definition comes at the most critical time in a person’s life.  Second, CMS repeatedly assures us that one of its primary goals is making health care quality transparent to the public.  Third, everyone agrees that dying at home is often the best choice and is a greatly underutilized option.

As the Post lays it out, the road to transparency has been long and full of detours.  In 2005 Medicare proposed that hospices collect quality data.  That proposal wasn’t adopted until 2008, and even then there was no definition of what data were required.  In 2010 the Affordable Care Act called for hospices to report quality information but left it to Medicare to define the information.  In 2012 Medicare specified one quality statistic but this May dropped that statistic in favor of seven new ones.  Medicare also announced that no quality information will be available to the public until 2017—at the earliest.

So if you plan on hospice care, try to hold on until 2017.