A patient’s compliance is not just the patient’s responsibility

Posted on September 16, 2013

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I’ve detailed my health insurance issues before. With the new laws taking effect soon I was researching things again. I came across this great discussion of Obamacare on Reddit. Really, I was just looking for an easy to understand summation, and the thread provides that.

A doctor then weighed in on what was about to happen. Here is their comment (edited for brevity):

The basic idea is that there will be an established list of “ideal care” criteria that must be met, and reimbursement will be adjusted accordingly.

[…]

Already, mandatory reporting regarding provider outcomes is beginning. For example, Dr. Johnson, who is a Surgeon, will have to report his average operative time for a cholecystectomy and his post-operative wound infection rate. If he falls below a certain percentile nationally, his reimbursement will be negatively affected. If he is in say, the top 10% nationally, he will receive a small bonus (this is the tentative plan as I’ve heard it from the higher-ups at my hospital).

How this will work for primary care is a little murkier. The general consensus seems to be that they will try to reimburse based on a similar set of nationally defined “quality measures” like they are using for hospital accreditation, Medicare center status, etc. For example, is Dr. Smith keeping his patient’s HbA1C below 7.0%? (An indication of good long-term diabetes control). Is he keeping his patient’s LDL less than 100? So on and so forth.

This all seems like a great idea on the surface, but without putting my own opinions into this, I offer the following scenarios for your consideration:

  1. Dr. Smith and Dr. Johnson are both primary care physicians. They both have 10 identical patients with diabetes, for whom each physician prescribes the exact same, evidence-based, standardized diabetes protocol. 4 of Dr. Smith’s patients are non-compliant with their insulin regimens, despite optimal counseling and the best efforts of Dr. Smith, thus their HbA1C values will be above the cutoff that qualifies them for a “good outcome.” In the end, medication compliance is a patient choice which cannot be controlled by the physician and although Dr. Smith did everything right from a medical standpoint, those patients will be red-flagged and reimbursement decreased.
  2. Dr. Unlucky is a cardiologist, and Bill is a patient of his with Congestive Heart Failure. Bill is receiving the evidence-based optimal medical management for his CHF (Carvedilol, ACE inhibitor, etc). Bill has been counseled extensively on the importance of a low sodium diet and careful fluid intake because of his CHF. Bill is a Cleveland Browns fan and they make it to the Superbowl for the first time since god only knows. Bill has a Superbowl party with his buddies and eats a ton of potato chips and drinks a few beers and ends up in the hospital with a CHF exacerbation. Dr. Unlucky is now dinged for a hospitalization for CHF exacerbation for a patient under his care, which will be reported and affect his pay.

It’s situations like this that are worrying physicians. I urge you to remember these are just example scenarios, to give you, the reader, pause to consider what could be a greater problem.

What criteria will comprise these quality of care outcomes remains to be seen, so no one knows yet exactly how it will look, but believe me when I say that it’s not the mandate that’s the game-changer, it’s what I’ve discussed above. This will fundamentally alter the face of the medical field, whether it’s for better or for worse remains to be seen. Hopefully this was helpful.

I want to make this post about scenario 1., which got a lot of debate in the thread. We’ll extend this beyond physicians to pretty much anyone in the healthcare arena. So, we’re talking physicians, athletic trainers, dietitians, physical therapists, personal trainers, etc. I truly believe this extends to pretty much anyone, especially those in a service industry, but I’ll stick with what I know best.

First, a story

I’m going to take some excerpts from Atul Gawande’s great article regarding Cystic Fibrosis treatment. The discussion revolves around Warren Warwick, who was the head of the best CF treatment facility in the country, Fairview Hospital in Minnesota.

In 2003, life expectancy with CF had risen to thirty-three years nationally, but at the best center it was more than forty-seven.

What makes the situation especially puzzling is that our system for CF care is far more sophisticated than that for most diseases. The hundred and seventeen CF centers across the country are all ultra-specialized, undergo a rigorous certification process, and have lots of experience in caring for people with CF. They all follow the same detailed guidelines for CF treatment. They all participate in research trials to figure out new and better treatments. You would think, therefore, that their results would be much the same. Yet the differences are enormous.

When discussing the top CF program:

Patients with CF at Fairview got the same things that patients everywhere did—some nebulized treatments to loosen secretions and unclog passageways (a kind of mist tent in a mouth pipe), antibiotics, and a good thumping on their chests every day. Yet, somehow, everything he [Warren Warwick] did was different.

In the clinic one afternoon, I joined him as he saw a seventeen-year-old high-school senior named Janelle, who had been diagnosed with CF at the age of six and had been under his care ever since. She had come for her routine three-month checkup […] He stood in front of Janelle for a moment, hands on his hips, looking her over, and then he said, “So, Janelle, what have you been doing to make us the best CF program in the country?”

“It’s not easy, you know,” she said.

They bantered. She was doing fine. School was going well. Warwick pulled out her latest lung-function measurements. There’d been a slight dip, as there was with Alyssa. Three months earlier, Janelle had been at a hundred and nine per cent (she was actually doing better than normal); now she was at around ninety per cent. Ninety per cent was still pretty good, and some ups and downs in the numbers are to be expected. But this was not the way Warwick saw the results.

He knitted his eyebrows. “Why did they go down?” he asked.

Maybe it’s not your client’s compliance which is the issue…

…maybe your approach is the problem.

My initial reaction to the majority of those complaining their client / patient “Just didn’t listen to me” is boo-fucking-hoo. Because:

  • Yes, I know, your client hasn’t changed their eating habits. But I also know you’re recommending they focus on portion control. (Here.)
  • Yes, I know, your client hasn’t been exercising enough. But I also know you’re obsessing over high intensity interval training. (Here.)
  • Yes, I know, your client isn’t eating well. But I also know you’re telling them to fully abstain from alcohol. (Here and Here.)
  • Yes, I know, your client hasn’t been stretching enough. But I also know you’re recommending they stretch their hip flexors. (Here and Here.)
  • Yes, I know, your client hasn’t done what it takes to stoke their metabolism. But I also know advocating snacking doesn’t help weight loss. (Here.)
  • Yes, I know, your client isn’t taking good care of their shoulder pain. But I also know you’re having them do a bunch of rowing and puling exercises. (Here and Here.)
  • Yes, I know, surgery leaves no guarantees. But I also know there’s little evidence for treating knee arthritis with surgery, and less and less evidence meniscal tears cause knee pain. (Here and Here.)

Yes, I know, you told your client something. But I also know what you told them is ineffective.

Regular readers of this site know how in love I am with Shirley SahrmannThere is a sentence in her book, “Because the program must be performed daily and requires continual attention, performance is the responsibility of the patient.” While I love Sahrmann, this sentence is incomplete.

The other side of this argument

I read through a ton of that Reddit thread, and was surprised to see no one mention the flip side to this whole thing. Doesn’t anyone think someone out there is going to say, “How can I get my clients to adhere to my advice better? How can I communicate differently? How can I make my advice easier to follow? How can I work with the client’s psychology better?”

I’ll use myself as an example. When I first started working with people I would go over a bunch of exercises they should do on their own. I’d then tell them, “Ok, I want you to do what we did today a few times per day, a few times per week.”

It took me about a month to realize that was horrendous advice.

Next,

“You have these 3 exercises. Do them 4 times a day, 10 reps each time, a few times per week.”

Still bad.

“I’m going to write down these 3 exercises for you. Do them 4 times a day, 10 reps each time, a few times per week.”

Not even close.

“I want you to do these exercises we went over.

I’m going to email you a spreadsheet so you have things in writing. The spreadsheet will tell you what to do Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday. It’s set up to be printable so you can carry it with you, and check things off to keep you on track.

I’ll include videos of each exercise. Each exercise has roughly 1-2 things to think about while you do them. Don’t try to think about more than that.

If you’re not sure of anything let me know immediately. When you come in next time I’ll have you go through them so I can make sure your form is solid on everything.

Also, we’ll go over in more detail how you should change how you sit, sleep, and stand. You can’t do a few exercises, but sit like a gymnast all day, and expect your lower back to feel better. I’ll include pictures of some bad positions and better positions in the spreadsheet too.

There will be a lot in there, so at the end there is a daily checklist to simplify things and keep you on track.

Finally, before you leave I want you to demonstrate these 3 exercises so we can review one more time.”

Better. But I’m sure I’ll find I’ll need to improve that too.

“That sounds like a lot more work…”

You’re damn right it is. Oh, I’m sorry, did you think because you went to school for 30 years everyone would listen to you like you’re omnipotent?

Be honest, the reason so many don’t want to be measured is because deep down these people know what a true measurement will reveal: How inadequate we are. By any measure we currently have, the United States lags behind. The only thing we excel at is spending more money on our health than anyone else. I’m sure the use of more barometers will only more thoroughly reveal our ineptitude. 

Let’s parallel healthcare with the tech industry.

I remember reading about the differences between Steve Jobs of Apple and Bill Gates of Microsoft. Someone made the point of Jobs not being technical, compared to Gates who was very technical, and that it was actually a huge advantage for Jobs. Because he didn’t understand all the nuance, his products had to be user friendly. Think of it this way: For Gates, having to install printer drives on a laptop was no big deal. For Jobs, it was.

Jobs realized people complaining about the ease of use of a computer was the designer’s fault, not the user’s. Hence, plug a printer into a Mac, click & click, you’re printing. Plug a printer into a PC, click & click & click & click, throw your PC against a wall.

He also realized you could help the user, opposed to blaming them. Rather than say the user isn’t talking loudly enough into the microphone, Apple realized they could slowdown the speed of the computer fan so it’s quieter when you try to speak. Rather than say it’s the user’s fault for hitting the caps lock key, they decidedly to make it so you had to hold the caps lock key in order to activate it, thus, helping the user out.

Getting people to follow directions is no different. Stop blaming the patient or client and figure out how you can help them better.

Of course, you can’t help everyone

Look, I am by no means saying getting people to change their behavior is easy. It’s probably one of the hardest things you can try to do. Some people cannot be helped. Steve Jobs could make a computer as user friendly as he wanted, but if the user is blind, there’s not much he can do about that.

I’ve had one client for three years who has an extensive shoulder history. He constantly leans on his left elbow, and or puts his left hand on his hip so his arm is out to the side. Two clear signs of someone abusing their shoulder joint.

Standing hands on hips back view

Not shoulder friendly.

For three years, I have repeatedly told him to always keep his elbow at his side, and to stop leaning on his left elbow. For THREE YEARS, I have seen him twice a week, watch him lean on his left elbow and keep his left arm out to his side. Never mind the fact he does this a ton when I’m not around, he’ll do this for the hours I’m right next to him!

I’ve had remote clients who will tell me a certain exercise bothers them or they’re having trouble with something. I’ll ask them to send me a video or picture so I can see what’s going on. Two weeks later, “Such and such is still bothering me, any ideas?” Me: “Send…me…a…video.” Then I’ll never hear from them again.

This one just happened last week: Client walks in:

Client: “I found out it looks like I’m diabetic.”

Me: “Wait, what?”

Client: “Yeah, I’ve been borderline the last few years.”

Me: “What? You’ve never told me this? And you’ve had blood work done multiple times per year since I’ve known you.”

This client has battled with me for years over changing eating habits. When giving her suggestions she has been immediately dismissive. Nothing I’ve said has even made a crack in her armor. She once told me, “What’s the point of exercising? We’re all going to get some disease and die anyways.”

She follows the above conversation with:

Client “I’m going to get the blood work again. The night before I had the most recent work done I ate an entire box of cinnamon rolls.”

Then with,

Client “Sometimes I think this isn’t even worth it. God should just take me now.”

So yes, I get it, changing human behavior, in whatever capacity, is not easy.

By this woman’s own admission, she has an addiction. I’ve heard Dr. Drew state the prognosis for true addiction is akin to cancer. Essentially, trying to change someone who has deep seeded behavior issues can be just as hard, if not harder, than trying to treat a cancer patient.

Changing perspective

So yes, sure, there’s a chance you get a tough group. But, are you positive,

  • as a physical therapist you’re not merely content to collect insurance checks rather than actually help anyone?
  • as a teacher you’re not resigned to laziness, following the same curriculum for 30 years, loving the tenured life?

Back to the original scenario:

1. Dr. Smith and Dr. Johnson are both primary care physicians. They both have 10 identical patients with diabetes, for whom each physician prescribes the exact same, evidence-based, standardized diabetes protocol. 4 of Dr. Smith’s patients are non-compliant with their insulin regimens, despite optimal counseling and the best efforts of Dr. Smith, thus their HbA1C values will be above the cutoff that qualifies them for a “good outcome.” In the end, medication compliance is a patient choice which cannot be controlled by the physician and although Dr. Smith did everything right from a medical standpoint, those patients will be red-flagged and reimbursement decreased.

Maybe the doctor really is unlucky. Or, maybe a 40% failure rate -for that scenario- is absurd no matter what (I’m not saying it is; I’m giving an example), and it’s really because the doctor thinks he’s an infallible God, has no bedside manner, has a better chance of connecting with a car than another human being, and didn’t follow up with his patient once?

Knowing what to do and getting people to do it are disparate. The understanding someone needs to eat less is not the same as understanding how to get someone to eat less. Your knowledge of what to do means nothing without the knowledge of how to get someone to do it. Your telling someone “Eat less” does not absolve you when that person does not eat less. Your advice, your instructions, your approach, your communication ability, are all to blame too.

Doctors, physical therapists, personal trainers, nutritionists, whatever:  Take some responsibility. People are complaining and trying to change things for a reason. The fact of the matter is we’ve been poor at our jobs for a long time.

There is an alternative to continually bitching, it’s called stepping your game up.

How did Warren Warwick handle that teenage girl?

Would you have gone to these lengths? Do you think most in healthcare go this far and care this much?

He knitted his eyebrows. “Why did they go down?” he asked.

Janelle shrugged.

Any cough lately? No. Colds? No. Fevers? No. Was she sure she’d been taking her treatments regularly? Yes, of course. Every day? Yes. Did she ever miss treatments? Sure. Everyone does once in a while. How often is once in a while?

Then, slowly, Warwick got a different story out of her: in the past few months, it turned out, she’d barely been taking her treatments at all.

He pressed on. “Why aren’t you taking your treatments?” He appeared neither surprised nor angry. He seemed genuinely curious, as if he’d never run across this interesting situation before.

“I don’t know.”

He kept pushing. “What keeps you from doing your treatments?”

“I don’t know.”

“Up here”—he pointed at his own head—“what’s going on?”

I dont know,” she said.

He paused for a moment. And then he began speaking to me, taking a new tack. “The thing about patients with CF is that they’re good scientists,” he said. “They always experiment. We have to help them interpret what they experience as they experiment. So they stop doing their treatments. And what happens? They don’t get sick. Therefore, they conclude, Dr. Warwick is nuts.”

“Let’s look at the numbers,” he said to me, ignoring Janelle. He went to a little blackboard he had on the wall. It appeared to be well used. “A person’s daily risk of getting a bad lung illness with CF is 0.5 per cent.” He wrote the number down. Janelle rolled her eyes. She began tapping her foot. “The daily risk of getting a bad lung illness with CF plus treatment is 0.05 per cent,” he went on, and he wrote that number down. “So when you experiment you’re looking at the difference between a 99.95-per-cent chance of staying well and a 99.5-per-cent chance of staying well. Seems hardly any difference, right? On any given day, you have basically a one-hundred-per-cent chance of being well. But”—he paused and took a step toward me—“it is a big difference.” He chalked out the calculations. “Sum it up over a year, and it is the difference between an eighty-three-per-cent chance of making it through 2004 without getting sick and only a sixteen-per-cent chance.”

He turned to Janelle. “How do you stay well all your life? How do you become a geriatric patient?” he asked her. Her foot finally stopped tapping. “I can’t promise you anything. I can only tell you the odds.”

In this short speech was the core of Warwick’s world view. He believed that excellence came from seeing, on a daily basis, the difference between being 99.5-per-cent successful and being 99.95-per-cent successful. Many activities are like that, of course: catching fly balls, manufacturing microchips, delivering overnight packages. Medicine’s only distinction is that lives are lost in those slim margins.

And so he went to work on finding that margin for Janelle. Eventually, he figured out that she had a new boyfriend. She had a new job, too, and was working nights. The boyfriend had his own apartment, and she was either there or at a friend’s house most of the time, so she rarely made it home to take her treatments. At school, new rules required her to go to the school nurse for each dose of medicine during the day. So she skipped going. “It’s such a pain,” she said. He learned that there were some medicines she took and some she didn’t. One she took because it was the only thing that she felt actually made a difference. She took her vitamins, too. (“Why your vitamins?” “Because they’re cool.”) The rest she ignored.

Warwick proposed a deal. Janelle would go home for a breathing treatment every day after school, and get her best friend to hold her to it. She’d also keep key medications in her bag or her pocket at school and take them on her own. (“The nurse won’t let me.” “Don’t tell her,” he said, and deftly turned taking care of herself into an act of rebellion.) So far, Janelle was O.K. with this. But there was one other thing, he said: she’d have to come to the hospital for a few days of therapy to recover the lost ground. She stared at him.

“Today?”

“Yes, today.”

“How about tomorrow?”

“We’ve failed, Janelle,” he said. “It’s important to acknowledge when we’ve failed.”

Worth watching and reading

Here is a great talk by Atul Gawande on being “Better” in healthcare and education: 

Links to his books:

Better: A Surgeon’s Notes on Performance

The Checklist Manifesto: How to Get Things Right

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