Undoing the MDS Project

“While you are in this facility, how important is it to you to …?”

“Very important.  Somewhat important.  Not very important.  Not important at all.  Important but can’t do or have no choice.”

I’d like to turn that question around …

“As an activity professional, how important is it to you to use up to date interview techniques that directly generate meaningful information about your residents?”

1. Very important (If I’m going to be held accountable for the numbers generated by the MDS, I want them to reflect reality.)
2. Somewhat important (I’m kind of tired of residents telling me things that are the opposite of what their activity choices will be.)
3. Not very important (Don’t know, don’t care.)
4. Not important at all (I truly don’t mind wasting a lot of time to satisfy the folks at the Center for Medicare/Medicaid Services.)
5. Important but can’t do or have no choice (The system is crippled, but nobody cares what I, a lowly AP, have to say about it.)

Back in the 1950s, a fledgling psychologist named Daniel Kahneman was given the job of evaluating the new soldiers in the Israeli army.  They had been using interviews, but the results were pretty meaningless.  They didn’t help predict how the soldiers would perform.  Sound familiar?  So, he designed a new type of interview.  Michael Lewis describes the situation in his book, The Undoing Project.

“He [Kahneman] told them to pose very specific questions, designed to determine not how a person thought of himself but how the person had actually behaved” (80).

Suddenly, they were generating more meaningful data, data that had predictive value.

In the 60s and onward, Amos Tversky joined Kahneman to study how people make decisions.  Again, Lewis describes their findings:

“When people make decisions, they are also making judgements about similarity, between some object in the real world and what they ideally want” (114).

Residents in long-term care are asked to make decisions about which activities to participate in.  At that point, they are making judgements about the activities offered compared to what they ideally might want.  But judgements about similarity, Lewis continues, are related to the features we choose to compare, like how noticeable they are, the context we see them in, and how our brains classify them.  For instance, a resident who likes music might chose to skip a group music event because “it’s for old people who have lost their minds.”  He knows that other seniors, ones with memory/health issues are likely to be there.  However, if his room is close enough to the event, he might hear the music and excitement, change his mind, and show up.  Or not.  Decision-making is highly subjective and can change at any moment.

Tversky and Kahneman also realized that people make decisions based on the potential loss or gain they associate with the decision.  But to use potential loss vs. potential gain you have to start at some “reference point” of how you value where you are right now.  The problem is that the reference point can also vary.  It is basically a “state of mind” (275).  I don’t know about you, but my state of mind changes all the time.  I have good days and bad days, good moments and bad moments.  I remember skipping a good friend’s wedding back in the days when I was single.  It was only at the last minute that the prospect of sitting through a lively Polish wedding reception with no date suddenly sounded like a more of a downer than I wished to risk.

In the 1980s, I was in graduate school studying sociolinguistics.  We were trying to find out which language people would tend to use, and for what reasons, in societies that were multilingual.  Some languages enjoy higher prestige.  Some languages provide more credibility on the street. “Do not base your data on self-reported language preferences,” my professors told me.  Instead, we read about ingenious work-arounds that linguists use to ferret out when, where and why people choose to use one language instead of another.  I have interviewed people who claimed to always use a certain higher status language.  Only when pressed did they admit to using a lower status language for some situations.  Self-reported language use is more about self-image, than fact.  I suspect that the self-reported importance of religious participation also often falls into this category.  It’s a normative, a “what should be”, rather than what is.

Even major league baseball and basketball have learned to upgrade the metrics they study.  These teams compete during games, but they also compete to sign the best players.  Lewis documented how the 2002 Oakland Athletics baseball team competed successfully against teams with much more money to hire new talent.  They found that the normal statistics that scouts had been using failed to predict future performance.  The Oakland A’s knew what to look for and could get those players more cheaply because the big teams were overlooking them.  I wonder what metrics we could come up with that would more accurately predict future activity participation. And what if what is important to US, and what WE prefer, is more relevant to their participation than any data we could get from the residents themselves?

Do our residents maximize their utility?  Short answer – no.  “Maximizing utility” means that people will reliably attempt to get the most value for their expenditure, the most bang for their buck.  In the case of activity programming, it could mean the most happiness for the expenditure of time and energy.  Kahneman saw that economists lagged behind the psychologists because the economists

“…assumed that you could simply measure what people wanted from what they chose.  But what if what you want changes with the context in which the options are offered to you?” (278)

Just because someone used to enjoy doing something independently doesn’t guarantee they will want to do it with our “facilitation,” or in the nursing home environment at all.  Ever.

Lewis summarizes Kahneman’s conclusion about maximizing utility.

“…people’s anticipation of happiness differed from the happiness they experienced, and … both differed from the happiness they remembered.

… If happiness was so malleable, it made a mockery of economic models that were premised on the idea that people maximized their utility.  What, exactly, was to be maximized?” (351).

In 2001, Kahneman, the psychologist, won the Nobel Prize in …economics!

Scientists, psychologists, linguists, statisticians, sports analysts, and economists, have found that people in general are systematically irrational in their thinking processes and choices.  We don’t really know why we do what we do.  Making irrational choices is not an aberration.  It is normal.

Fast forward to 2018, and CMS still has us ask our residents to self-report on their activity preferences in the absence of any observable behaviors.  That is the MDS 3.0.  Then we are expected to relate that to the activity decisions the residents will actually make.  That is the activity care plan.  Then we are held accountable for any pattern of discrepancies between the MDS 3.0 and the residents’ actual behavior.  That generates a CAA and potentially a flag.

I know it’s possible to make lemonade out of a lemon and use the MDS interview to also generate a certain amount of activity history.  But that doesn’t make up for the amount of time and energy that CMS wants us to waste on the quest for that precious #1 – 5 that we have to try to coax from the residents.  There are better ways to get an activity history.  There are better ways to develop care plans.  And there are better ways to help activity professionals and residents develop good activity programs.  My activity director gave me a chuckle and a quote for this paper when she wrote to me that, “I am blessed to have you on our ALF actively engaging those folks into things THEY never knew THEY wanted!”

What am I saying?  Activity professionals are made to use methodology that is as much as 60 years out of date.  We are held to bad science that academics who study human behavior have spent whole careers discrediting.  There is a big difference in why our residents do things as opposed to why they think they do them.  Study after study has shown that nobody is a rational decision-maker.  So, who at CMS still thinks that you generate meaningful numbers by asking our residents “how important” something is?  And how long are we going to go along with it?

©Donna Stuart, ADC        January 21, 2018, 2019

Lewis, Michael. The Undoing Project. New York: W. W. Norton & Company, Inc., 2017.

https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/NursingHomeQualityInits/Downloads/Archive-Draft-of-the-MDS-30-Nursing-Home-Comprehensive-NC-Version-1140.pdf

Who Did You Say?

Anybody need a little help second-guessing themselves today?  I think I have the book for you!

When I write my blog, I typically summarize what an author has said and relate it to senior care and the activity profession.  In this case, I had some difficulty in summarizing the book “A Stitch Of Time,” by Lauren Marks.  Her wording is so precise and meaningful that “summarizing” ends up muddying the prose rather than simplifying it.  What makes this remarkable is that the author is the survivor of a stroke which left her aphasic.

Aphasia isn’t rare.  Somewhere around a third of stroke victims will experience aphasia, an impairment of language involving speech and/or comprehension of speech, and possibly reading or writing.  From the Greek a “not”+ phanai “speak.”  Other sources of brain trauma or disease can also lead to aphasia.

We might think of language as simply a tool for communication with other people, but it is much more.  We also use it to communicate with ourselves.  Marks talks about the uses for external language and internal language, that inner voice that you use to ask yourself questions or sort and label thoughts.  She explains, 

“Language is wrapped up with our current and remembered sense of identity.  We assign certain words to an experience, and some of them become part of our telling and retelling of the event – the script of our lives” (vii).

And,

“We use words to describe ourselves to others, but also to describe ourselves to             ourselves.  This makes language and memory often inextricably intertwined” …           “Memory is a constant act of creation” (viii).

Marks considers herself to be fortunate.  She pretty much lost the ability to read or write, and her speech was profoundly affected.  But because her inner voice was also muted, she was unable to register how bad her speech sounded.  And she was blithely unaware of how devastating her situation would have appeared to her PhD student, pre-stroke self.

“With my internal monologue on mute, I was mainly spared from understanding my condition early on.  Unable to ask myself:  What is wrong with me?  I could not, and did not, list the many things that were.  I was no longer the narrator of my own life” (20).

While still in the hospital, she had picked up a book and realized that she couldn’t read any more.  There was a momentary disappointment, she says, but without the words to think about it, the disappointment quickly passed.  She also tells of the moment she first picked up a magazine.  The graphics were too visually stimulating, “shouting” at her, and she put it down quickly (6).

With one side of her brain damaged by the stroke, Marks experienced her environment in new ways.  The functioning side of her brain was much more vigilant and sensory oriented.  Without the distraction of language, it hyper-focused on her surroundings.  She felt an “interconnectedness” with the world around her (20).

Another new sense was of serenity, a pleasant, peaceful, almost meditative state that occupied her consciousness when left to her herself.  Lacking the constant chatter of an inner voice, she could think but without noise.  She labels that meditative state “the Quiet,” and she valued it intensely (18).

“It was a placid current, a presence more than an absence.  Everything I saw or touched or heard pulsed with a marvelous sense of order” (3).

But the agenda of those around her, who cared about her, was to pull her out of the Quiet and into language use.  In other words, speech therapy, family visits, conversations, and recovery-oriented activities worked against what the author then considered high quality of life.  Marks recalls that as soon as a visit or speech therapy would end,

“… I would gently be redelivered to the happy stillness of the pervasive Quiet”(11).

As Marks progressed in recovery and her language skills, both external and internal, improved, she struggled with the actual meaning of recovery.  If language, thought, memory and identity are so closely entwined, and so malleable, who exactly IS the person recovering and what identity are they recovering TO.  She expresses frustration with family and friends who seem fixated on her returning to her pre-stroke identity, when she feels like she is in the process of establishing a new identity.

In terms of care planning for someone like Marks, we have several issues to balance:

Are we attributing thought processes or feelings of loss that are not present?  I certainly feel that being aphasic would be frustrating for me, and it is easy for me to project that emotion onto someone with the condition.  But Marks and those around her noticed that she wasn’t that disturbed about it, especially at the beginning.

Also, how do you define quality of life for someone who can’t communicate well?  Marks valued the “Quiet.”  Most of those around her were unaware of what it was or that she enjoyed it so much.  What if our agenda of promoting social interaction and stimulation are actually depriving the person of what they feel provides quality of life at the time?  But what if quality of life at the time is at odds with the goals of the person who that individual was before the stroke?  And what if quality of life at a certain stage is at odds with the goals of the person who the stroke victim will become as recovery progresses – if it progresses?  To whom do we as caregivers owe our loyalty and person-centered care planning?  Obviously, we encourage, we flex, we try different approaches … we might even manipulate.  Part of our expertise in person-centered care is in figuring out what works.  But for whom?   In this case, the author during the worst symptoms vs. the author before the stroke vs. the woman writing this book –each was the same person, but each would have had different preferences/goals.

So, now you have some more fodder for second-guessing yourself as an activity care-planner.  You’re welcome.

© Donna Stuart, ADC       February 18, 2019

Marks, Lauren. A Stitch Of Time. New York: Simon & Schuster, 2017.

That’s The Way We Like It - Or what do cell phones, Starbucks, polarized politics, and bingo have in common?

Maybe we can figure it out with some help from Mark Penn.  He is a political strategist who ran polls for presidential candidates and authored the book, “Microtrends Squared.”  During his career, he became aware of information that many other pollsters, news outlets, and marketers were not paying attention to, much less analyzing.  He is making his own news nowadays pointing out what he observes and how he interprets it.  His book offers many interesting examples of what he calls microtrends and how they might add up to something bigger in our future.

For instance, we consumers, have been given more choices.  From burgers to personalized cosmetics and, of course, Starbucks, we can have things just the way we want them.  Penn says,

“Something rather surprising happened, however, as consumers got more choice.  It turned out they found choices they intensely liked, and they stuck with them.  More choice ultimately resulted in people making fewer choices. … Once everyone had the opportunity to choose their perfect drink at Starbucks, most customers now ask for the ”regular” – the same grande mocha Frappuccino they get every single day”(8).

We know that for many seniors, the perception is that people have more choices in activities on their own at home.  But by the time a person needs long-term care (LTC), that is not really the case any longer.  Denial takes over as the person is able to do less and less.  At one facility where I worked, there was a woman who sat moaning to herself in her wheelchair by the nurse’s station.  A family member told me that, at home, his mom had basically been lying on the bed all day looking at the ceiling.  He thought maybe she might –finally- be a candidate for assisted living.  I backed out of the conversation before I said something inappropriate.  I don’t make any excuses for LTC.  We CAN provide greater quality of life for many of our residents than what they had been experiencing at home.

But they reach LTC and suddenly there is a whole activity calendar full of choices.  A bit overwhelming, yes?  The Starbucks mentality says more choices are better, but apparently human nature does not.  According to Penn, we will try some new things until we find our favorite, and then stick with that.  Which brings us to bingo.  Straightforward rules that even someone with pretty advanced dementia can still command.  Happy payoff in little dopamine bursts as you find each number.  Self-confidence among peers.  Respect from staff – yes, bingo deserves respect.  Prizes!  What’s not to like?  And the next thing you know, the commitment to bingo is locked in place.  Grande mocha Frappuccino, anyone?

What about those who never used to play bingo but now will do almost nothing else?  It certainly did not show up in their activity history or MDS.  For this, we must remember the cell phone.  Penn describes the problem created by carefully finding out what people want and then sticking with it: 

“… they will often change their perspective when they see something new.  The big consulting companies told AT&T that the cell phone would never take off.  They were told it was nothing more than a specialty item—because they were dealing with people as they were, not as they would be transformed” (343).

Many researchers have told us that our choices and preferences are affected by our environment, experiences (new as well as old), and mental/emotional state, among other things.  All this is to say that people do change.  Even seniors in LTC.

Even you and I.  So, where do you get your news?  Penn explains that

“It is a powerful and unexpected result of the world of microtrends that greater personalization created more polarization” (9).

One of the other NAAP bloggers, Krista Fischer, ADC, recently shared some ideas on how to deal with politics in the workplace.  What Penn’s book suggests to me is that the “microtrends” that affect our politics can also affect our activity calendars in obscure ways.

We are allowing a whole marketplace of internet providers like Facebook to collect data about us.  Penn describes how that data helps businesses target their marketing to us individually … to allow us the maximum of, once again, personalized choices.  Back in the day, there were only 3 network news channels to watch on TV and they were fairly similar because they were targeting a general population.  They couldn’t afford to offend whole groups of viewers.  But with all the cable channels available, and the ability to target specific groups of viewers profitably, came more polarized reporting.  Hence CNN vs. Fox.  People tend to watch one or the other with a strong preference.  If either channel does try to include thoughtfully opposing viewpoints, many of the viewers will protest in outrage.  If you get your information from the internet news or social media, it’s even worse.  The info bots will ferret out your interests and selectively feed you news stories that reinforce your opinions so that, in the process, they can get their ads in front of you.  Been Googling heartburn symptoms and following your side of the latest political debate?  Don’t worry.  They’ve got you pegged.  You, and this goes for liberals and conservatives, may have more in common with a radicalized Muslim teen in Germany than you ever realized.

Penn sums up his point,

“Perhaps the single greatest issue arising out of the data-driven society we have built is that, when it comes to news, food, work, or how we raise our children, more choice has resulted in people making fewer and fewer choices.  This is also maybe the most difficult issue to correct.  Americans find what they like and cocoon within it, in ways that distort their views of the rest of the world.  Then these choices reinforce themselves as we repeat them over and over again”(343).

I like to think that one of the challenges of my job as an activity professional is to help people re-think their activity choices.  Some folks, bless their hearts (as we say here in the south), have a gung-ho attitude and will come out for almost any activity.  What would we do without their support?  Others, bless their hearts, have cocooned themselves in ways that distort their views of the world around them.  It is difficult to change this choice, but not impossible.

Oops, now where did I leave my cell phone?  It’s time for bingo.

© Donna Stuart, ADC                   July 15, 2018

Penn, Mark. Microtrends Squared. New York: Simon & Schuster, 2018.