Friday, April 17, 2020

How COVID-19 is Revealing a Transparency Dilemma in Long-Term Care

My students at Dickinson Law often suggest important law and aging issues to explore and certainly the COVID-19 crisis is a daily source of topics.  High on the list in my students' minds have been the tragic stories connected to diagnosis and prognosis of the disease in "nursing homes."  Sometimes it is hard to even keep up with the stories.  Consider these headlines from the last few weeks:

When my sister and I first realized that the novel coronavirus was likely to have a devastating impact on anyone with a compromised immune system, we quietly and sadly acknowledged our minor relief that our parents, who had both experienced dementia in the final months before their deaths, were spared at least this particular situation.   My sister went further and said, "If this had happened while Mom or Dad were still alive, I would have quit my job to apply for a job in their living center.  I wouldn't have been able to live with being forced to stay away, in essence abandoning them."

Anyone who knows my sister would know that would have been her heartfelt plan.  But it was also a reminder of something we knew so well from our experiences.  Even the very best of care settings -- whether in the individual's home, in assisted living, in supported independent living (such as in a CCRC), or in a skilled nursing facility -- need a loved-one's involvement.  On the one hand, the cared-for individual "lights up" when they see a family member arrive, even if the visit is just for a few minutes and even if the older person cannot quite remember the identity of the visitor.  No activity-based care program can entirely reproduce that positive impact.

But even the best facility also benefits from having the eyes and ears of family members to observe and make appropriate reports about concerns.  On my last sabbatical,  I stayed in Arizona to be near both of my parents, in their 90s.  Mom was still in the family home and Dad was in a truly caring, small, personal and well-staffed dementia care center.  One day I arrived to find my father deeply upset.  He said "I can't find my room."  I was worried that this meant his cognition had taken another turn for the worse. But, when I offered to walk him from his favorite outdoor bench to his room, it turned out he was right.  Everything that was once his -- his favorite chair, his clothes, his photographs -- were gone from his room.  I found out they were on their way to a different cottage.  More distressing, it was a cottage for individuals who no longer left their rooms -- and that wasn't my father's profile at all.  Suffice it to say, that "move" was reversed.  

That's a small example.  But when a pandemic means that family members cannot visit at all -- the opportunities for confusion and short cuts can increase in any care setting.  I don't know what the solution is; but I do know that the need for transparency in care, and for family members to feel welcome every day in every care setting, are important to quality of care.  And, of course, to quality of life for everyone.  

I'm hopeful that the COVID-19 pandemic will stimulate creativity and identify new ways of safely maintaining relationships for frail elders or others with delicate health profiles, while also still taking appropriate precautions to reduce the potential for high rates of cross-contamination and infection, including infections that cross the borders of the setting.  On my father's last full day, before a nighttime stroke left him in a coma, he and I had lunch together, we walked in the sunshine, and he had his favorite ice cream for a snack.  How I would hate to think of others missing such opportunities.

Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Ethical Issues, Health Care/Long Term Care, Housing | Permalink


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