Where's Frank? - The Thin Edge of Dignity

By Dick Weinman, AARP Oregon Volunteer and Communications Guru residing in an Assisted Living Facility

I stopped wondering. Frank is here – back again.   The last time I wondered about Frank’s whereabouts ( What is a HIPAA?-March 24, 2015 ), he emerged from his apartment after a few days inside, and told me, and the other concerned residents at our dining room table, that he’d been “in left field.” (For those non-baseball fans for whom the once-upon-a-time sports lingo sounds like a foreign language -- he had been sick.)

He told us. It was OK for him to do that, but it would not be OK for the ALF administration to tell us. That’s unfortunate, because our ALF is characterized as a “community.” The trouble with this “our-lips-are-sealed” formula is that the ALF is responsible for providing us , the residents, with care and peace of mind – no false, fearful, anxiety-driven imaginary scenarios over missing residents. (We are told when someone has died

Then Frank disappeared again – for a longer time; not a word from those on high.

Don’t say it: I know. The ALF administrators and staff are constrained by the 1996 Health Insurance Portability and Accountability Act - HIPAA and amended in 2003.

Protected Health Information – PHI -  allows the Department of Health and Human Services - HHS - to punish the non-compliant party and file suit through the Office of Civil Rights - OCR. PHI was added. So, once again, with its passion to do good, Congress screwed up. Or maybe it was the application of good deeds which prohibited Frank’s friends from finding Frank. The consequences of noble striving led to ignoble ends The responsible parties, Senators Kennedy and Kassenbaum, - it was a bi-partisan foible - should have remembered the ancient aphorism of Aesop about where road construction can lead.

So where was Frank during the second disappearance? No one will talk. I’m reminded of the early Hitlerian time in Germany and the more recent era of South American los desparecidos. Here one day. Gone the next. No answers. Our ALF family situation is certainly not the same thing as a Nazi or Argentinian dictatorship in motivation and meanness, but it leaves an uncertain residue: “Where’d he go? What happened to him?”

Distraught, Doris didn’t know where Frank was. As she said, “He was here one day,” and tapping her finger on his empty place at the dining table, “he wasn’t here since.” To exacerbate the situation, Doris has severe memory issues and easily becomes confused and anxious.   By suddenly going missing, Frank, who had been comforting for Doris, providing stability to her nervousness, had inadvertently caused her distress.

No. That’s not the reason for her distress. Frank wasn’t the cause. Maybe the ALF policy. The “System”. Or HIPAA - a good idea gone sour.

Perhaps Doris was incessant, or perhaps the administration recognized her and Frank’s special friendship, for she was soothingly, but misleadingly, reassured that “he is with family.”

How can we solve the conflict between a person’s medical privacy – and presumed desire to be secretive – and friends’ concern about the person’s well being? In reality it boils down to a facility being punished for acting contrary to HIPAA.

I would want my friends to know why I had suddenly disappeared. I’m not concerned that they know about my health; actually, things have been taken so far that it would be hush-hush that I have to take two scoops of Metamucil rather than one.

I would welcome the opportunity to sign a “permission slip” – a universal waiver - upon admission to an ALF, which would allow the facility to tell those who ask, the truth about my whereabouts.

Any takers? Or other suggestions?

Editor’s note: (Frank and Doris are fictional names) For other views on long term care, check out

[Photo: Joyce DeMonnin]