Patient compliance: what's the big deal about it?

WHAT DOES PATIENT COMPLIANCE MEAN?

The term “patient compliance” is a funny one for someone like me, who in some areas of her life doesn’t have the patience required for compliance. Maybe that’s just my funny little brain playing with words again.

What does patient compliance mean? A compliant patient is one who follows or completes with their physician’s diagnostic, treatment, or preventive procedure(s). For example, John Doe’s blood work shows high LDL cholesterol and triglycerides (diagnosis: hyperlipidemia). He’s a compliant patient because he faithfully takes the medication his doctor prescribed, avoids eating saturated fats, and increases his exercise in order to lose some weight. His mother-in-law has high blood pressure (hypertension) and is recovering from a stroke, so in order to prevent the medical problems that challenge her mom, John’s wife Jane follows her doctor’s recommendation to reduce her own salt intake and join John for a daily walk. Their obese son Mark, who is scheduled to have bariatric surgery in two weeks, is compliant as he carefully follows his surgeon’s pre-op liver shrink diet to prepare for the surgery. Their sun-worshipping daughter Mary just had a suspicious mole removed and complies with her dermatologist’s recommendation to use sunscreen every day and give up the tanning bed.

A highly commendable family, aren’t they? What about you? Are you a compliant patient? All the time, some of the time, or none of the time? Compliance is a practice that matters to me…does it matter to you?

BARIATRIC PATIENT COMPLIANCE

Most bariatric surgeons agree that the #1 cause of disappointing weight loss or other WLS “failure” is patient non-compliance with the surgeon’s protocol.

In contrast, many adjustable gastric band patients (the disappointed ones, anyway) agree that the #1 cause of band “failure” (however they experience it) is that the band doesn’t work, no matter what (if any) protocol you follow.

How can we reconcile such opposite views of WLS failure? What can surgeons do better or differently to improve patient outcomes?

We already know what patient compliance means, so let’s take a look at the term “protocol.”

In a general sense, protocol is a set of conventional principles and expectations that are considered binding on the members of a particular group, be it professional, social, or political. It’s also the formal etiquette and code of behavior, precedence, and procedure for state and diplomatic ceremonies. Protocol is a big deal to the British Royal Family, as witnessed by the flutter over the Queen’s order that Kate, the Dutchess of Cambridge must, as a former commoner, show reverence to the ‘blood princesses’. She is expected to curtsey to those born royal, such as Princesses Beatrice and Eugenie – both in public and in private. Although the media did a lot of speculating about Kate’s putative humiliation over this order, the importance of royal protocol can hardly be a surprise to a British citizen who marries into the Royal Family.

In the medical world, the term protocol refers to the plan for a course of treatment – a physician’s diagnostic, treatment, or preventive procedure(s) like those followed by John Doe and his family. And like Kate Middleton, a bariatric patient can hardly be surprised over their surgeon’s insistence that they follow that protocol. Any surgeon worth his/her scalpel educates patients about that protocol from the time of an informational seminar to the day of a band patient’s first fill, with updates as time goes on. That’s why I feel impatient when I hear (very, very often) that new bandsters are shocked and vexed over the requirement that they follow a liquid diet immediately before and after their surgery, as well as after fills. “How can that possibly be a shock?” I ask myself. Did the patient sleep through their pre-op education, or were they so focused on the vision of themselves in a size 0 that they forgot the work that must be done to arrive at that size?

Or (please say it ain’t so!) did the surgeon or other medical professionals in that bariatric program not spell out the details of their protocol when the patient was preparing for surgery?

And then there’s the whole “Why does my surgeon say eat only ½ cup of food when my friend’s surgeon says eat 1 cup of food at a time?” dilemma. As I explained in Bandwagon, surgeons establish (and fine tune) patient protocols based on their own experience with their own patient population. If band manufacturers hired teams of auditors to ensure that every bariatric surgeon in North America used the exact same protocol, no one would be able to afford a gastric band, and very few surgeons would bother using the band for their patients. And a brand-new gastric band sitting in its package is completely useless until a trained and experienced surgeon implants it in a patient. Allergan and Ethicon Endo aren’t surgeons; they’re manufacturers of medical devices. So while speculating about the great variation in WLS protocols might be mildly entertaining, it’s not going to do a whole lot to get you closer to that size 0. If you choose a surgeon you trust and respect, you also choose to abide by their protocol, and enjoying that protocol is beside the point. I spent decades enjoying my own weight loss and weight gain “protocols” so much that by the time I was 54, I needed weight loss surgery. So whose protocol is healthier or more effective, mine or my surgeon’s? I lost 92 pounds by following a surgeon’s protocol. Is there a problem with that? I think not.

OK, hang on a second while I climb off my soap-box. Ah, that’s better. Here I am again, standing on the ground, surrounded by living, breathing (if distant) WLS patients. It’s not fair to generalize about any of us, is it? But generalize I must in order to make a few more points.

THE DOUBTING THOMAS

I think some of us are by nature more likely to ignore, question, or defy authority figures, while others accept authority without voicing or even thinking a question. In the former case, we need to cultivate trust in the doctors who want to help us, while in the latter case, we need to cultivate enough trust in ourselves to dare to ask those authority figures for better or more detailed explanations of their instructions.

I’m more on the defiant, or Doubting Thomas, end of the patient spectrum, but a few years ago I read a statement that struck me (out of the blue) as very true:

I extrapolated that statement from a religious context into the context of my WLS journey (at that point in my life, I could extrapolate almost anything into the context of my WLS journey). When I had Lap-Band® surgery, I was convinced that I was a total failure at weight loss. Going into that operating room, I had to believe something I’d never seen myself do: that with the help of my band, I could succeed at weight loss and maintenance. And I did.

Because truth can take a while to reveal itself, I think people like me need to ask ourselves, “What possible harm could befall me if I do follow an instruction whose proof of efficacy I can’t see right now?” Let’s go back to a previous example: your doctor tells you not to eat more than 1 cup of food at a time. You know you can easily eat 2 cups, so if you really want (or think you need) to eat all that, and no immediate negative consequences result from doing that, why shouldn’t you just go ahead and do it? Why should you blindly follow your doctor’s seemingly arbitrary and unreasonable instruction to stop eating after you’ve consumed 1 cup of food?

It’s your doctor’s job to explain the “why” behind that instruction, but if she/he hasn’t done that to your satisfaction, and he/she isn’t sitting at the table with you and that plate of delicious food, I suggest that you consider what terrible thing would happen if you put away the extra cup of food for now. Will you starve to death? Really? What else might happen? Will you surrender your liberty, be forced to vote for your doctor’s favorite presidential candidate, or (worse) be compelled to clean his toilet every Saturday for the next 20 years?

Oh, no. No, no, no. He’s your doctor, not your teenaged son, so let’s consider another, quite serious consequence of following his instruction. Maybe, just maybe, nothing bad will happen at all. Maybe even something good will happen. Just because your compliance doesn’t yield an instant reward doesn’t mean it won’t yield a future reward. What might that reward be? How about weight loss and the avoidance of side effects or complications? Doesn’t that sound good to you? Sure sounds good to me.

I do much better at following instructions if I understand them, but I’m here to tell you that in almost 5 years of banded living, I didn’t truly begin understand my surgeon’s and dietitian’s protocol until I’d been

following it for 6 or so months, and the scope of my comprehension expanded more over the next few years. In the meantime, I lost those 92 pounds I mentioned earlier. The lesson there is that you don’t have to completely understand or believe in a protocol for it to work, as long as you follow it as best you can.

THE BELIEVER

Now I want to talk to the folks at the other end of the patient spectrum, the obedient ones who wouldn’t even think of defying the advice of an authority figure. Their WLS journey can be bumpy too, even when they slavishly follow their doctor’s protocol, and here’s why.

One of the problems with blindly following instructions that you don’t understand is that sooner or later you’re going to find yourself in a situation no one thought to warn you about. You won’t instantly know what to do, and you may waste precious time on unnecessary blood, sweat and tears. You may even end up doing something harmful. Without at least an inkling of the principles behind your doctor’s protocol, you’ll have a hard time coming up with a stopgap measure to help you survive a surprising and stressful situation. If you worry that any decision you make on your own will be the wrong one, ask yourself: “What’s the worst that could happen if I do nothing right now? What will happen if I do the ‘wrong’ thing?”

Will you die? Surely not. If you’re able to breathe, ambulate, drink water, state your name and what year it is, and blood isn’t pooling in your shoes, you’re going to survive at least long enough to call your surgeon, leave a message, and wait for a call back. So unless the decision requires someone to dial 911 to speed you to the emergency room (if you can’t breathe, move, swallow, talk, remember your name or the year, stop the bleeding, or if something else life-threatening is happening), take a deep breath! And another one, and another one. Ah, that’s better!

People on the Believer end of the patient spectrum are often reluctant to ask questions of their doctors because they’re afraid they’ll look stupid or make the doctor angry. I can only repeat the old saying that the only stupid question is the one you think but don’t ask. It’s extremely unlikely that your doctor is going to spank you if you ask (again), “Why can’t I take ibuprofen for my headache?” If your doctor seems irritated by a question like that, it may be because you’re trying their patience, or it could be because they’re having a bad day (worried or annoyed about something completely unrelated to you or their job, wishing they hadn’t eaten the whole pastrami sandwich for lunch, didn’t sleep well last night, etc.). It could also be because their bedside manner needs work. If that’s the case, you can set out in search of another surgeon, put up with the original surgeon’s rudeness, or do your part to lead that doctor towards kindness. If the answer to your question starts looking like a time-consuming project that your doctor doesn’t have time for right now, it’s perfectly okay to say something like, “Is there someone else in the office who could work with me on that?” or “Would it be better to make another appointment to talk about this?”

THE DOCTOR

Doctors, like other people, come in all shapes, sizes, and temperaments, and with varying communication skills. They’re not all made from the eternally patient, smiling, avuncular Marcus Welby mold, and not all of them are motivated solely by the desire to help other people. They’re often just as fascinated by science as by altruism. Like you and me, they work to earn money, and if their pay seems ridiculously high, just ask one of them how much money they borrowed to get through medical school, and how much they pay each year just for medical malpractice insurance. In many ways, I’m a “you get what you pay for” kinda gal. If 3 doctors quoted band surgery at a total of $13,000 to $15,000, and a 4^th doctor quoted only $4,000, I’m not sure I’d feel safe with a bargain basement surgeon (nor would I assume that the $15,000 surgeon was the best).

Last I heard, no courses in Bedside Manner or patient communication are required of, or even offered to medical students. Doctors must exchange important information with patients whose own communication skills vary greatly, and they must take a patient’s measure, choose a treatment plan, and explain it to the patient using a minimum of enigmatic medical terms, all within a matter of minutes before they rush off to the next patient or task. Doctors must rely on support staff to do hundreds of things to keep the doctor’s boat afloat, and it’s entirely possible that they have no idea how rude or careless or wonderful some of those people are because so much of that goes on in a way that’s invisible to the doctor. And which would you rather your surgeon focus on: the ink cartridge for the Xerox machine, or the pain in your abdomen?

In medical folklore, surgeons are infamous for possessing a God complex, with big egos, enormous self-confidence, and an excess of superiority. When you think about it, it does take a lot of chutzpah to cut into another human’s flesh and fiddle with their innards in the effort to fix a problem., so it doesn’t surprise or bother me much that some surgeons have a hard time coming down to the lowly level (perceived or real) where their patients trudge through the mud of ordinary human existence. In many types of surgery, that’s not a big problem because the surgeon sees the patient maybe 3 or 4 times: the initial consult, the surgery, and 1 or 2 post-op follow-ups. Then the patient goes on their merry (we hope) way and the surgeon scrubs up and dashes into the operating room to cut into someone else’s medical problem. General surgery is usually a fix-it-and-go thing. If your diseased gall bladder gets tossed away and forgotten, do you really care if that also means your abdominal pain is also a thing of the past?

But bariatric surgery, which treats a chronic and incurable disease that’s a highly complex tangle of physical, behavioral, and emotional problems, is a different matter. Successful bariatric surgery is not a fix-it-and-go proposition (and that’s reason #99 that I would hesitate to ever have surgery outside the United States, knowing that I have no local surgical back-up or support). Bariatric patients need far more education, aftercare and support than most other types of patients. I’m convinced that one of the causes of WLS failure (however you define failure) is inadequate patient education, aftercare and support. And on top of that, adjustable gastric band patients need even more education, aftercare, and support than most other bariatric patients. While I believe that too many general surgeons have been jumping on the gastric band-wagon without fully understanding the needs of those patients, it’s not fair to say that they’re all being careless or negligent when they fail to give patients what they really need. Unless they’ve had bariatric surgery themselves, they just don’t know what it is to walk in our shoes. They might consider the implanting of a gastric band to be an interesting and possibly lucrative addition to their practice without realizing that surgical expertise is only part of what the band patient needs.

Doctors and other people with very high self-esteem can be hard for us ordinary mortals to deal with, but it’s a mistake to assume that they’re looking down on us. They may not be looking at or thinking about us at all, not because they don’t care about us but because their minds are so enthralled by and preoccupied with medical science. My father was a brilliant scientist whose head was so far up in the clouds that I often wondered what planet he was on. At the same time, I know he loved me when he noticed me (and I know now that nothing I could do would change that).

In a sense, doctors who get heavily involved with their patients are doing those patients a disservice. The Hippocratic Oath exhorts doctors to “do no harm,” not to mop up your tears or hug you when things go wrong. If that seems harsh, consider this: doctors actually need to keep some emotional distance from their patients in order to treat them well medically. Without that distance, it would be very hard for them to make rational decisions about patient care. That’s why it’s considered poor practice for doctors to treat themselves or their loved ones.

I’m not saying that it’s okay for doctors to be cold and heartless and should be excused for bad behavior. None of them are perfect (and neither are we, the patients) and you won’t find me worshipping at the altar of the AMA or the ASMBS. I’ve encountered some wonderful doctors and surgeons in my lifetime, and some bad ones too. The average American bandster might see 3-4 doctors on a regular basis (a few times a year): a primary care physician, a gynecologist (if you’re of that persuasion), a dentist, and maybe a chiropractor or a specialist like an eye doctor. The average American bariatric surgeon probably sees 20-30 patients a day (perhaps a few thousand per year). Since I’m not a mind-reader, and no one cares as much about my weight loss journey as much as I do, I figure it’s my responsibility to refresh my doctors’ memories each time I see them. I might wish that I didn’t have to repeat over and over again that (for example) I’m hearing impaired and need my doctor to look at me when he speaks, but that’s a minor issue compared to some of the bigger ones I face as a mature adult.