I have worked in the aging profession for more than 21 years, have been a registered nurse for more than 40 years and will soon begin my (semi-) retirement. This has led me to do a lot of reflecting on my career and, for lack of a better word, my legacy as a nurse and long-term care educator.
I will never forget the first time I heard about person-centered care: It was around 2002 when Steve Shields, then the administrator at Meadowlark Hills Retirement Community in Manhattan, KS, came to speak to a Joint Provider/Surveyor Training in Topeka, KS. The idea behind the trainings was to bring together the long-term care provider community and the long-term care surveyors in an effort to build relationships and to hear the same information simultaneously. The goal was to educate both sides to minimize conflict and improve consistency (sadly, a goal that has not been reached, which is an article for another day).
Steve graphically described how people living in a long-term care facility were bathed. To paraphrase, it went something like this:
“Imagine lying in your bed under the covers on a cold December day. At 5:30 a.m., the aide comes into your room, turning on the overhead lights, and says, ‘Good morning! It’s time for your bath!’ She pulls the covers off of you, swings your legs around and lets your feet touch the cold tile floor. She strips your nightclothes off of you, wraps you in a thin, white bath blanket and sits you down on a cold, shower chair. She whisks you down the hall to the shower room door with your bath blanket flapping around your bare behind. She pulls you into the white tiled, neon-lit shower room backwards and wheels you over to the whirlpool. She transfers you onto the whirlpool chair, pushes a button to suspend you in the air, swings you around and dunks you in a lukewarm bath.”
Seated in the back of the auditorium, I saw providers and surveyors alike actually sink down in their seats realizing how this routine practice was disrespectful and undignified. I shuddered as I remembered watching this procedure as I surveyed and documented that the bath was given as care planned! At that moment, only one thought came to mind: “Shame on us. Shame on all of us – providers and surveyors alike. What the heck were we thinking?”
The culture change concept for long-term care began in the early ‘90s and gained momentum as Centers for Medicare & Medicaid Services (the federal survey agency) began educating the state survey agencies on it in 2002. In 2004, I was lucky enough to attend the second annual Pioneer Network Convention where I was blown away by the innovative, thoughtful, and life-affirming journeys of the few communities across the world who were early adaptors of the concept. Subsequent to that convention, I was determined to look at long-term care living through different lenses. I became, for lack of a better word, a culture change evangelist!
Trying to accomplish that while working for a state survey agency proved impossible and I left the state in 2006. I was so excited to join the provider community so I could actually lead providers down the path to person directed living by working in person centered communities and sharing the journey with those who wanted to change.
For the last 8 years I have taught, preached, cajoled and pleaded with communities to do the right thing. I know that I have made a difference in the lives of many people living in a few communities. I have seen countless people “flunk” hospice and come alive after their medications were reduced and their appetites returned. I have watched weight loss lists shrink when diets were liberalized and people were served real food instead of expensive, nasty-tasting supplements. I have seen elders enjoy a cocktail before dinner or an extra serving of dessert without having to ask anyone for permission. I have seen people with significant frailties and physical limitations live lives full of joy, pleasure and purpose. In the communities who truly provide person-directed living, elders will tell me they are no longer just waiting to die.
I am used to people blowing smoke up my dress. When I was the Regional Manager for the survey agency in Kansas, providers would come to my office to assure me that they understood where they went wrong (as evidenced by multiple deficiencies) and that they were going to fix the problem. I have talked to numerous administrators, owners, and department managers who tell me now that they “do culture change.” However, when I discuss their systems with them in detail (or go see for myself) I discover they still get cognitively impaired people who use a wheelchair up at 5:30 am (to help out the day shift). They still have limited mealtimes and low concentrated sweet, no added salt, and low fat diets. They tell me they have a great activity program — yet the only activities offered on the weekends are movies and popcorn on Saturdays, with church and family visits on Sundays, because the activity staff aren’t there. But they are quick to point out their beautiful crystal chandeliers, fine china, and the same fancy bedspreads throughout the building which do not indicate personal preference or choice.
This brings me to the point of this article. Now that I am retiring, I am taking the gloves off. I am sick and tired of nursing homes that say one thing and do another. According to the Pioneer Network, 10 million people have died in traditional nursing homes since we learned the importance and power of person-directed living. The time to change is long overdue and has frustrated me for almost 20 years. I cannot in my wildest dreams fathom how someone who has the power (I am talking to you owners, administrators, and operators) to change the lives of the people they allegedly serve can continue down the traditional path. Through the years of frustration I have deduced that there are only a few possible reasons:
1) Laziness: Change is hard and staying the same path is easier. If the census is fairly high and the surveys are “good”, why should you bother?
2) Ignorance: It is hard to imagine anyone in a leadership role in a nursing home has not been exposed to culture change since the concept has been around for nearly two decades now.
3) Immorality: Knowing this is the right thing to do for the elders you serve and choosing not to do it for whatever reason seems immoral, dishonorable, or just plain wrong to me.
So, the question for you is this: Which one are you? And, after you take a good long look at yourself, go out there and just watch and listen to what is going on in your facility (because you can’t call it a home or a community if you are persisting in operating in the medical model of care).
See if you have any of these indicators of a traditional, medical model nursing home:
- Do you see people stuck or strapped to their wheelchairs sitting idly all day?
- Do staff talk over the elders in conversation with each other?
- Do you have a get-up list?
- Do you tell people what days they will receive a bath instead of asking?
- Are the adults who reside there covered with a bib at mealtime?
- Do you hear people yelling for help? Or, worse yet, people saying repeatedly, “I should die” or “Why doesn’t God take me?”
- Do you have problems with call-ins because you can’t keep enough direct caregivers, so you work those who stay to death?
- Do you float staff through the facility rather than consistently scheduling them to work with the same elders?
- Do you have restrictive diets?
- Is alcohol prohibited because the doctor won’t order it?
- Do people just pass the time or are they engaged in something that gives them pleasure and purpose?
- Do you and your staff use words like, “feeders”, “unit”, “hall”, “heavy wetters”?
If the answer to any of these questions is “yes”…… shame on you. Get to work! Make a difference! For God’s sake – do the right thing. The time is NOW!
Karen Craig, RN-C, is an instructor with GERTI (Grow with Evergreen Resources for Transforming Innovations in Olathe, KS.