I am sure many of you either watched or have heard about Tuesday night’s FRONTLINE report on assisted living.  Like many “exposes”, Frontline focused on a few horrific cases and extrapolated out to paint the assisted living provider, Emeritus, as an evil corporation basking in profits while neglecting their residents.  I dare say if Frontline focused their investigators on any such facility or provider, they could find one or two horrific cases.

That being said, the cases they reported on were very real!  Let me give you my thoughts on the report and the circumstances that were revealed.

Don’t Confuse Assisted Living for Custodial Care!

In Virginia the standard a perspective resident must meet in order to qualify for “assisted living” is:

“"RESIDENTIAL LIVING CARE" MEANS A LEVEL OF SERVICE PROVIDED BY AN ASSISTED LIVING FACILITY FOR ADULTS WHO MAY HAVE PHYSICAL OR MENTAL IMPAIRMENTS AND REQUIRE ONLY MINIMAL ASSISTANCE WITH THE ACTIVITIES OF DAILY LIVING. INCLUDED IN THIS LEVEL OF SERVICE ARE INDIVIDUALS WHO ARE DEPENDENT IN MEDICATION ADMINISTRATION AS DOCUMENTED ON THE UNIFORM ASSESSMENT INSTRUMENT. THIS DEFINITION INCLUDES SERVICES PROVIDED BY THE FACILITY TO INDIVIDUALS WHO ARE ASSESSED AS CAPABLE OF MAINTAINING THEMSELVES IN AN INDEPENDENT LIVING STATUS.”

Did you catch that, “Minimal assistance with the activities of daily living.”  Which begs the question, what are the activities of daily living or ADLs?

“"ACTIVITIES OF DAILY LIVING (ADLS)" MEANS BATHING, DRESSING, TOILETING, TRANSFERRING, BOWEL CONTROL, BLADDER CONTROL, AND EATING/FEEDING. A PERSON'S DEGREE OF INDEPENDENCE IN PERFORMING THESE ACTIVITIES IS A PART OF DETERMINING APPROPRIATE LEVEL OF CARE AND SERVICES.”

In the definition above, “transferring” means walking, the ability to get around.  In the case of  Joan Boice (http://www.pbs.org/wgbh/pages/frontline/social-issues/life-and-death-in-assisted-living/life-death-in-assisted-living-theyre-not-treating-mom-well/) not only was no formal assessment conducted prior to admission, when she was admitted staff found out rather quickly Mrs. Boice was a fall risk!  Further, the family had warned the staff that Mrs. Boice often had trouble getting out of a chair that she would lose her balance and fall!  I wonder if the family knew about “transferring” and the standard to be met to reside in assisted living?

In the case of George McAfee, his care at the facility was wonderful… for a while.  Frontline insinuates that deteriorating care was due to Emeritus purchasing the facility.  Yet McAfee suffered from dementia, a progressive disease!  This horrific tale ended with McAfee getting into cleaning supplies that should have been locked away.  He drank a commercial grade dishwashing liquid and died eleven days later.  Should the supplies have been locked away, absolutely!  But let’s look at an even earlier warning sign. 

According to the report: “Daddy’s appearance changed,” Morgan recalled. “He was often unshaven, his hair was dirty, he dressed himself but he was dressed in the same clothes over and over and over again and his laundry wasn’t being done.”

Remember our definition of ADLS?  The ability to perform bathing, dressing, toileting…? While many residents meet the criteria for assisted living upon admission, some residents, especially dementia patients, deteriorate and then are unable to complete their ADLs.  Did the family of George McAfee know this?

The last point I want to make is the emphasis on pressure ulcers, or “bedsores”.  According to the Mayo Clinic: Bedsores — also called pressure sores or pressure ulcers — are injuries to skin and underlying tissues that result from prolonged pressure on the skin. Bedsores most often develop on skin that covers bony areas of the body, such as the heel, ankles, hips or buttocks. People most at risk of bedsores are those with a medical condition that limits their ability to change positions, requires them to use a wheelchair or confines them to a bed for prolonged periods. Bedsores can develop quickly and are often difficult to treat.

While watching Frontline I was struck by the interview of a son, whose mother had suffered awful bedsores.  In it he noted he visited his mom almost every day, but had no inclination to look under her robe to check for bedsores!  I thought to myself, what if the family had known to do that sooner?  How might things have turned out different?

In her book “A Bittersweet Season – Caring for Our Aging Parents and Ourselves, Jane Gross states in her chapter entitled “The Myth of Assisted Living”:

The yawning gap between expectation and reality is what makes assisted living problematic for so many families. Even the term is meaningless, since each state defines it differently and providers vary greatly within states.  So, some basics: at its core assisted living is a social, rather than a medical, model of long term care.

I think that is how a family should look at the question of whether or not assisted living is the proper residential choice.  The social aspect is a major consideration as it is important that elders engage with others through conversation, interaction and socialization.  On more than one occasion I have seen noticeable improvement in clients after they moved to an assisted living facility. 

Yet, when the elder has chronic medical concerns that affect the ADLs, families must think long and hard on the proper residential choice for a loved one.  As you can see, pre-screening is very important.  I suggest it always be done by an independent third party.  You should also discuss it with your primary care physician or other doctors you see on an ongoing basis.

Elder Law Answers has published a checklist of things to look into as a family works through this critical decision: http://www.elderlawanswers.com/checklist-choosing-an-assisted-living-or-continuing-care-facility-12147

In my firm we offer the services of a Life Care Planning Coordinator, Stephanie Wagoner.  Stephanie is a Registered Nurse and an instructor in the nursing program at Patrick Henry Community College.  Stephanie has completed specialized training in earning her Certification in Elder Care Coordination from the Stockton Center for Successful Aging, part of the Richard Stockton College of New Jersey.  Working as a team, we can help you in determining what residential choice is best and then aide you in implementing that choice.  Life care planning at its core helps families find, get and pay for the care they need at that specific time in their life! 

Part of Stephanie’s job is to also educate families!  From our examples above, how could an educated family have made better decisions along the way?  What is they knew of the criteria and how an assisted living facility is regulated?  What if they knew to check for bedsores?  What if they knew an assisted living facility was not custodial care for dementia patients?  There would have been much different outcomes.

Does this excuse the facilities? NO!  But families have responsibilities as well to see that their loved one is properly cared for.  We stand ready to help our clients face these tough decisions!

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