Transparency Issues in Long-Term Care: The Potential for Misuse of Confidentiality Policies to Hide Infection Facts from the Public

Recently I was talking with a friend in another state who is the director of an assisted living facility that largely serves older adults who have significant risks factors.  I asked, "Have you had any residents or staff members that have tested positive for COVID-19?"  I asked her directly, because there was no way to know the answer to that question from public websites, either in her state or on a national basis.  The good news was that her facility had had no such diagnoses, either among staff or residents.  I also asked what she felt was key to avoiding infections, and we talked about the rates uncovered in other facilities in her own state.  She said bluntly, "We learned from our experience with influenza the last two years that we had to make real changes, and we did so before the COVID-19 was a reality and doubled down when we started hearing about the coronavirus." 

Internal infections have long-been a documented problem in residential care settings, and certainly not limited to so-called "nursing homes."  Contributing factors include residents who may have physical or mental conditions that make self-protection difficult and perhaps impossible.  My sister and I used to struggle mightily with a family member whose dementia interfered with the simple task of hand-washing -- even though this same person was the one who taught us the importance of soap and water from the time we were small children. It is perhaps ironic to recall that as a horse-mad girl I had tried to persuade both of my parents that there should be an exception for "barn dirt," on my theory that horse-related dirt was "clean dirt."  My mothers still insisted I undress on the back porch and wash thoroughly before coming in for dinner.  Wise woman, one who was quick to dismiss utter nonsense.

Fast forward decades and every day I hear new arguments regarding why facilities that have experienced life-threatening infections should not be required to report this in a public venue.  The most problematic argument is one that says an individual's infection is confidential medical information that prevents the facility from reporting statistical information, and thus an infection cannot be made public.  I've seen arguments about federal or state record-keeping policies such as HIPPA privacy rules or Pennsylvania's confidentiality rules  as the rationalization.  I think I know what my mother would call this kind of argument.

Syracuse Law Professor Nina Kohn tackles the history of mishandled safeguards against infections in long-term care with an Op-Ed for The Hill. In "Addressing the Crisis in Long-Term Care Facilities," Professor Kohn  points to specific actions at the federal level that have weakened, rather than strengthened, potential safeguards.   She makes five specific recommendations, including prohibitions on staff working in more than one-long-term care facility, to reduce cross-contamination, and the need for family members and others to make it clear that we "are paying attention to what is happening."  She reminds us:  "Those who are health care agents for nursing home residents should not be afraid to request access to medical records, as federal law entitles them to do, if facilities are not forthcoming with information about the care being provided."