Compliance is a two (or three)-way street

I’m not talking about the institutional term, ‘compliance’, which tends to go along with such painfully weighty subjects as billing and HIPAA (Health Insurance Portability and Accountability Act).

I’m talking, in simplest terms, about following your doctor’s directions.

Okay, this shouldn’t be difficult or complicated, right???

That depends on a few things…

First, did you understand the directions? Were they articulated clearly? Were you listening with your full attention, or were you still too busy being freaked out over a new diagnosis or some other new information?

If the answer to this is not a resounding ‘YES!’, the groundwork for failure has been laid already. To follow someone’s directions, especially medical ones, you need to understand them. This seems pretty easy, assuming no language barrier. But there’s ALWAYS a language barrier. There is the language the physician or other provider speaks, and then there is the language you understand. A good provider manages to bridge this gap with careful explanation, visuals, examples, anything to help get the message across. But with less and less time per patient, how on earth can a provider have the time to do this anymore? And, if you’re someone older and you start losing auditory processing skills (the ability to understand verbal instructions), along with your hearing, it’s a real disaster.

My father is a clear example of this. His English is excellent, he has a Ph. D. in a science, and he is the world’s worst patient. Part of this may be stubbornness. But an equally important part is what I’m seeing, which is loss of auditory processing ability. He is not able to follow verbal directions that have more than one step. He can do fine if he wants to know when to walk the dog, or when to get ready for us to go out. (Otherwise he operates on his own ‘retiree’s timetable’, which does not correspond to the timetable of any functional human.) But try a two-step process, and I have to repeat myself multiple times. I can see him saying it over and over to himself, and still he cannot execute.

Why would this be important in health compliance? Well, there’s a lot of if-then structure in current management of chronic health conditions. The doctor doesn’t have time to keep bringing you back each month to check on your compliance or make sure your meds aren’t causing problems. Instead, the patient is given a few ‘if-then’ scenarios.

My dad was given the following instructions: 1. Start taking atorvastatin (generic for Lipitor, a statin drug that lowers cholesterol). 2. Recheck your blood pressure in a month, and if it is still high, start taking 2 mg lisinopril (an ACE inhibitor, a type of blood pressure medication).

Seems simple enough, right? Especially for a Ph.D. scientist.

But this is where things get a bit freaky. I listened to my dad reciting these instructions to me. I checked his blood pressure one month into the atorvastatin treatment. It was still high, so he was supposed to start the lisinopril.

We then talked about him taking the lisinopril at the same time every day. He already takes metformin and now atorvastatin. (Despite all these meds, he is pretty healthy and physically active; I just think he hasn’t conquered belly fat and genetics.) He asked me if it would cause problems with his other meds; I assured him it should be fine, but that if he noticed problems, we could look at it again.

A week later, he was asking me to check his pressure again. I did, but I asked what was going on. He said he wanted to know if it was still high. It was… so I asked if he had been taking the lisinopril every day like he was supposed to. He wasn’t!!!! He actually told me he didn’t start it, because he thought he was supposed to wait another month!

I thought the directions from the doctor were crystal clear. But I’m not a 78 year old.

Sigh.

Now, do you see the problem???

I think clear WRITTEN directions are far more useful than verbal ones. That way, the patient doesn’t have to rely on memory. He can simply refer back to the guide he was given. This is actually something that the law requires.

Unfortunately, hospitals and doctors’ offices are more interested in complying with the letter of the law than the spirit. I think this is because it’s really burdensome to try to live up to the true intent of the law. The true intent would be to have the plan recorded onto a document that is given to the patient at discharge every time. But this means the doctor would have to log the plan into the system electronically, or write it out physically, for each patient, prior to their being released. That rarely occurs. So, instead, the nurses or medical assistants in the office fill out this vague and frankly useless document, and it goes home with the patient, and it offers no concrete or useful info. At least, that’s what happens in my office, and that’s what happens in the offices of every doctor I have seen. I get handed these sheaves of tree-killing uselessness, and they never actually reflect what the doctor and I discussed. Completely worthless. Expensive, time consuming, and unhelpful. In my office, I see patient families leaving these bundles of uselessness behind in the patient room, or the waiting room as they are checking out, the latter creating a potential HIPAA violation for the practice. I have expressed my concerns with this to the administrators, but since their job is to comply with the letter of the law and not worry about the intent of it, these concerns are ignored. And our printer ink and toner usage is completely ridiculous.

I tested my theory of auditory processing with Dad inadvertently a month or so ago. I asked him for some information that he had sent to me on my old phone, which broke before I could use it. I simply asked him, verbally first, to re-send it. He couldn’t do this–had no idea how to. Instead, he proceeded to send me email after email of non-helpful information, flooding me with junk mail. I kept responding with ‘Dad, this isn’t what I’m asking for’, followed by a restatement of what I was asking for. He still couldn’t get it to me. Over the phone, I then tried to tell him the simple steps to resend me the text message he had sent me originally (which had the info I needed). He couldn’t do it, and a spate of further useless emails ensued. Finally, I was fed up. I sat down and typed what I thought was a kindergarten level, step by step, list of how to find and resend the text message information.

Within an hour I had my info. It was amazing. I was shocked by the difference in his ability to execute the same kindergarten-level instructions, when given verbally (slowly), versus in written form.

But the world doesn’t provide everything in writing. And he needs to be able to handle more than one-step verbal directions. He’s sometimes alone with grandkids or dog, and needs to be able to be safe with them. He knows how to do things for himself. But if it’s something externally driven, like something we need help with, it has to be step after step.

Even working on his computer with him is fraught with challenges. If he needs a problem solved, his kids can usually do it for him. But he wants to learn how to do it himself, which is great… except that he can’t follow what we are doing even when we explain it verbally as we are going along. And we don’t live with him. Neither of us is a computer whiz; my sister and I grew up on the edge of the computer revolution. We had an old Commodore 64 as our first computer. I learned to program in Pascal in high school. I learned to type on a typewriter in my high school business class. So it’s not like we’re flying along… we’re very much learners by doing. And he learned the same way. I thought that would help us all be on the same page, but so far, not really. Teaching him how to use anything on the computer is an exercise in frustration, though he’s always surfing news and doing email and all that. It’s just that, anything that requires stepwise learning from him demands incredible repetition on our part. It has to be done in person, because trying over video chat is a nightmare. He writes it all down step by step, and he still isn’t able to ‘get’ it. And I just don’t have the patience for all this, which is terrible.

[By the way, my solution to this issue with Dad? Brain training. We’re going to try it. I bought him a subscription to a site that is actually backed by science (unlike most of them) for Father’s Day. I bought one for myself, too. I’ll report back in future posts…]

So, what does this problem with comprehension have to do with healthcare? Everything! Our aging population is one majorly vulnerable segment. They have the most meds, and the most complex instructions, and often the least capacity to understand. They’re being pushed to use patient portals they aren’t comfortable with, and to deal with the ever-growing list of medical shortcuts that are not serving them well.

But they’re not the only ones. I have been struggling recently to help a family member with a problem that falls in my area of expertise. My aunt has had limited mobility because of a surgery on her knee that should have been minor. However, she developed medical complications from surgery that really slowed down her recovery and rehabilitation. Because of this, she has been stuck with very limited progress, lack of independence, and a pesky knee brace to help her walk. Her husband is a family physician, retired for the last several years, and in decent health, but I have reason to question his auditory processing skills. His daughter is in the medical line as well, and healthy, and I recently had to explain for the third time why they can’t just stop using the big brace and go to the easier little brace without skilled help. The bigger brace is the safer and more effective one, but it’s definitely harder to use. People who aren’t in the field, even if they are in medicine, don’t understand that knee braces aren’t all created equal. There are so many options out there, because each one treats different problems.

Worse yet, people use words like ‘soft brace’, which doesn’t have a standard definition, so I was being asked to approve a ‘soft brace’ for my aunt to walk with, instead of the hinged one I had endorsed as an easier way to function than with a full knee immobilizer. A hinged brace can be set to the desired range of motion.  A knee immobilizer just keeps the knee straight. A soft, non rigid brace won’t support the knee against the patient’s body weight; it’s often worn for comfort.

I have had verbal discussions and a series of texts explaining (clearly, I thought) why they shouldn’t ditch the big brace until the physical therapist seeing my aunt determined it was safe. It has taken several repetitions of the same information to finally achieve a level of understanding that I can accept from them.

The first reason that comes to mind for why medically educated people keep asking the same question is that they’re hoping for a different answer, just like my patients are, when they get an answer they don’t like. When I’m the patient, if I don’t like the answer, I don’t keep asking the question–I ask followup questions to understand why, because I know the answer the doctor is giving is not usually arbitrary, and therefore it’s not something to bargain against. But my own patients, and my own family members, just keep asking the same question, as if I’m going to get tired and give in, and suddenly say it will be okay. It’s my job to be stubborn at work and with family, to keep on message, and to not fatigue and give in. But that’s really hard when you’re seeing a ton of patients and are just tired of arguing with everyone.

My secret is to invoke ‘biology’ when people try to negotiate down their healing time with me. I tell them the science behind my numbers. I remind them that the outcome is not up to me so much as it is to Nature, and therefore I go with what I know Nature requires for healing. This tends to dampen their ability to bargain further.

With my aunt’s issue, I put the focus on strengthening with an exercise bike and other methods. I try to emphasize that the brace is meant to be temporary, but that the only way for her to not need it is to be strong enough not to need it. This is a logic they can hold onto with hope, instead of being discouraged that I won’t bless their wish of getting rid of the bigger, more secure, but arguably more cumbersome, brace.

Anyway, I think I got through to my uncle and cousin about my aunt and why they need to not just do things because they want to. I stressed the risk of her falling. Neither of them could catch her safely if she falls because she is not using a good enough support, and then it will be a disaster, as she’s likely to have a fracture, and she already did badly from a medical perspective from her knee surgery. This point seems to be the one I have to hammer home every time they ask. I don’t think the situation is hopeless–I have asked them to involve the physical therapist, and to let her determine when my aunt is safe to downsize the brace or get rid of it entirely. I’d do it myself, but I’m far away, and I don’t think it’s responsible to treat someone I can’t be there to catch if I’m overly optimistic.

Compliance is both about having good, clear directions given in a manner the patient can understand and refer back to, and about reasonable expectations and understanding on the part of the patient and their support system. Without good communication, none of this can happen. This is the key to compliance, in my opinion.

A more personal example, without auditory processing issues or a wish to avoid something difficult: I recently had my third surgery for my gut reconstruction. I was very excited to have this surgery, because it meant the end of a long and arduous year of an ostomy, which will be explained further in other posts. I had it, I felt decent, and for once, I went home in the predicted time frame after surgery. Usually I’m a magnet for complications. I had asked, months before the surgery, and at discharge, what to expect as far as return of gut function, and when I could safely return to work. I was told by my surgeon’s partner and by his PA, separately, that I would have function right away, that I could expect 6-10 bms/day (with 2 of them being at night), and that I could go back to work quite reasonably with some force restrictions in 2-3 weeks after surgery.

Therefore, I booked my return to work, and return to patient care and surgeries, in that timeframe. Out of an abundance of caution, I didn’t book any big stuff for the first 2 weeks after my return, but my clinics were full.

I got home, and had such terrible pain and dysfunction in the first two weeks after surgery, that I called the office. I was concerned that I might have a stricture, or a tight spot in the gut repair, that was giving me pain and problems, because this is common with my surgery and is what my surgeon’s partner told me could happen.

So, instead of going back to work, I ended up back at the big hospital in the big city, and going under anesthesia again.

My surgeon said something really puzzling before the procedure. He didn’t think I had a stricture. He thought I hadn’t given things enough time. I told him this is what I was told to expect and how much time I was told to take off. But he told me what none of them told me: the gut needs enough time to settle down. It should work, but I can’t rush it. He thought my expectations were all wrong.

I was flabbergasted. And angry. First of all, I wasn’t rushing anything–I was simply doing what they told me I could, based on the expectations they set. Second, I only had those expectations because they told me to. I thought I’d need at least a month or two to figure things out after the surgery, but when they said only a couple of weeks, that was really exciting and scary all at once. After all, I’m not going back to a desk job. I’m going back to patient care. And that means being able to focus on other people’s needs, not my own, and putting myself second again. I didn’t understand how I could be ready in such a short time, but two separate members of the team, on separate questioning, said this, so I figured it was yet another mystery of the gut that I didn’t understand. (Trust me, there are many.)

My surgeon and I don’t communicate very well. This is something that has bothered me from day one. I go to him anyway, because I understand that he has the expertise to do what I need, which most in his field do not. But we can’t talk. He doesn’t listen well, in my opinion. I was describing my function to him, or lack thereof, before my scheduled exam under anesthesia, and I told him it was worse than when I first came to him. This was 100% true–I have more, and more painful, and less predictable, symptoms now than when I first came to him. It was bad then–I have no illusions about that–but I was able to figure out how to work, at least enough to get on with. Now I don’t follow a pattern that I can figure out, so how to schedule patient care with my current problems is a big challenge. He took it personally, as if I had decided the surgery had failed, instead of understanding that I speak in factual sentences. Functionally, I am really worse off right now, and hoping it will get better. But I’m not ready to throw in the towel just yet. Somehow that’s not the message he got, so he started talking with me about another ostomy. I pretty much started freaking out internally when he said that; why on earth would he say that to me before an exam under anesthesia for a presumably simple problem? My adrenaline levels surged and I was really upset.

See? We really don’t communicate well.

In the end, nothing was structurally wrong, so he doesn’t have a clear answer for why I’m having problems. Basically, I need more time away from work to sort things out. Time will help, he said, and so will trial and error with medications, etc. He did the right thing–he sent me to a gastroenterologist, someone who communicates much better than he does, who was able to articulate the issues and the treatment much more clearly. I was very receptive to her, because she didn’t just jump to conclusions or run over me verbally like he tends to.

Why couldn’t his people have said this in the first place? Then I wouldn’t be rescheduling patients and disappointing them. Then I wouldn’t have totally panicked because things weren’t where I was told they ought to be after two weeks. Then I would not have needed another procedure. Then I could simply have started working on this systematically from the start of my time at home.

Sigh.

Everyone (my family) tells me not to look back, not to worry about what is past, but just to move forward. I can’t. I get really mad about the poor communication. Every time, it’s the same old crap. And it hurts me, not him. I think it matters. It’s one of the reasons I started this site. If what I have endured can help others have an easier path, at least my experience won’t be the giant waste it seems otherwise.

The biggest issue with communicating with my surgeon is simply access. I never get to see him, except for at surgery–he is waaaay too busy. He has so many people like me who need his expertise that he is constantly in the OR. He has to depend on his team. But when his team gets it wrong, I’m the one who suffers for it, not them. And when I do get to see him, it’s for a brief minute or two, right before surgery. Or on rounds in the hospital. It’s rushed, it’s not satisfying, and it bothers me greatly.

I had a big surprise finding after my first surgery with him, that completely changed the expectations and plan. Did he discuss it with me? No. My non-medical family got to hear about it, but didn’t know what questions to ask. When I asked them, he didn’t want to talk about it just yet. We never did–three surgeries later. And here I am left wondering what my life is going to be like, and whether I will get to care for my own patients again. When I ask the people I have access to, their answers are apparently not correct. And he doesn’t have the honest, sit down talk with me that we should have had long ago. I need to know. Good or bad, I need to know. I can’t plan for what I don’t know.

Communication leads to trust. Trust leads to compliance and better outcomes. Without good communication, which requires access to the doctor at the appropriate times, it’s just not going to happen. I’m sure he thinks I’m a bad patient at times, but when we don’t talk, we don’t understand each other. Even when we have talked, which again has been mostly rare and rushed, we don’t understand each other.

There’s one more major road block to compliance, in my book. That’s the system part. This encompasses cost (insurers, health systems, etc.), ability to navigate the system, and efficiency or lack thereof.

My new gastroenterologist wants me to have a study. This is performed by another gastroenterologist at her institution. When I checked out from my visit, her office told me to speak with her assistant to schedule this. I did this by phone the next day, and left a message that was not returned. I followed up the following day, and got hold of the person, who promptly informed me that she doesn’t schedule this procedure. It took me asking her how, then, I was supposed to do it, to get her to find me the contact info for the office of the appropriate gastroenterologist. I dutifully contacted the office.

Imagine my surprise when his own office didn’t have a clue how to schedule for this study. I was fuming. I spent 15 minutes on hold, waiting for them to figure it out. Finally they told me I had to come and see him for a consult, and then he would schedule me for the study.

This is completely ridiculous. I already have a gastroenterologist. I don’t need a consult–I just need data from the test. I am pretty sure my insurance will refuse to pay for the visit that I don’t need, also. And since I don’t think it’s necessary, either, I don’t disagree with them.

So, what’s a good patient to do? I had to talk with my doctor’s office again, and let them know of the conundrum. I don’t think I’ll schedule this test if I have to jump through unnecessary hoops, because I’m traveling from a few hours away and would have to make separate trips to accommodate this unnecessary visit. I’m sure it has something to do with billing and all that, not with necessary care, so I’m going to refuse.

Noncompliant patient? Yep. But maybe sometimes that’s the right move.

If my doc can ask him to see me just for the test, I’ll do it. Otherwise, I’m really thinking no for the moment. If things get better with time and trial/error, at least within the first month, maybe I don’t need this test anyway. If I’m not on the right path, I see more value in the test, even with the extra hoops it seems to require.

This ultra-huge hospital in NYC where I get my care, just because that’s where this surgeon is, is a beast. It is a money-making juggernaut. And that’s often by cheating. I will go into the iniquities of the hospital billing process in other posts in more detail… but suffice it to say that sometimes care is for the convenience of the system, not for the patient or the doctor.

My exam under anesthesia was less than 3 weeks after my last admission for surgery. Yet, when the scheduler booked me, she told me I’d be getting labs again. I didn’t see why I needed more bloodwork; an exam under anesthesia doesn’t lose any blood or cause electrolyte shifts or anything. It’s outpatient. I just had surgery less than 3 weeks ago. Why do I need any of this?

She couldn’t answer me. I gave in–for the moment–just to get on the books. But when I went to see the PA in my surgeon’s office, I pointed out the lack of utility of the labs. Not because I care about another blood draw, though I probably should; instead, because I really hate wasteful medicine. I hate unthinking medicine. And I know my insurer is paying attention, and hates it too.

Luckily the PA saw my point and agreed to forego the completely unnecessary labs. If she couldn’t do that, I would have asked her to ensure that she justified their need in writing in the medical record, because otherwise they would be denied.

I had this experience with the scheduler trying to set me up for a gastrografin enema (anything with the word ‘enema’ should be clear as far as how undesirable it is, especially when unnecessary) before my third surgery, when I already had one a month after the second surgery. I asked her why I needed it repeated, and she had to go and ask the PA, who knew it was unnecessary and said not to do it. What if I hadn’t asked? I would not only have another >$2k medical bill to contend with, but I’d have an unnecessary amount of additional serious radiation exposure, and, let’s face it, no one wants an unnecessary enema!!! I’d lose on all three counts.

Take home points:

  1. Make sure you understand the instructions from the doctor in whatever form you need to make that happen. Ask for written instructions if it seems too complicated to you verbally, and be honest about your own cognitive capacity to understand complex verbal instructions.
  2. If the care seems to be duplicated, ask the provider, not an intermediary, to explain the necessity of it. Most times, it will be unnecessary, and it won’t be repeated, just because you asked about it.
  3. Be an active participant in your health care. If you’re a doormat, they will walk all over you. This doesn’t mean that you should be argumentative. Calm, rational discussion is generally appreciated. I always think informed families are capable of better decision making than the ones who never ask questions.
  4. Communicate problems regularly with your doctor. Don’t stop taking medicines without discussing with them, unless that was part of your previously discussed plan of care. If you think you’re having side effects, call and talk with the nurse or PA.
  5. If you are worried about the accuracy of the info you are getting from the PA or nurse or other staff member, ask to speak to the doctor for clarification. It’s sometimes the only way to really know what is going on. If you can never get to your doctor with questions, consider finding another doctor.

 

Good health to you!

The journey begins…

They say doctors make the worst patients… and they may be right. But it’s not for the reason that people think! We don’t always do what we are told, true… but sometimes that can save us. I have found through my personal experience as a patient, and from being there for family members, that a little knowledge really _is_ a good thing, when it comes to staying safe and avoiding unnecessary care.

From the clinic to the OR, the lab to the inpatient wards, I’ve been there. I’ve had good care and bad, good outcomes and bad ones. I learned so much along the way… things they never taught us in medical school! I’d like to think that knowledge has made me a better doctor myself, since I now know what it’s like to be on the other side. But it also made me think: what happens to people who don’t have one foot on each side of that door? How do they get through the system safely and well? How would my own loved ones have fared without a watchdog at the gate?

My mission is to share what I have learned the hard way with you, so that when you or your loved ones have to brave the system, you can do so armed with all the knowledge you need for a trip through this urban jungle… and save yourselves some headaches, heartaches, and unnecessary expense where possible.

I am still in my patient journey, so new challenges lie around every corner. The posts are not in a particular order, so feel free to search for a topic that interests you, or sample them at random.