Mike the Mad Biologist

Or more precisely, why do some patients not follow their doctors’ orders even when it is blindingly obvious that they should do so? In Monday’s NY Times there was an interesting article about patients who are being paid to take their medicine in a reliable manner. I was going to write about the payment issue as it raises all sorts of questions, but I’ve become fixated on something in the article: ignoring obvious incentives to take care of yourself.

For example, once a juvenile diabetic (someone who can’t manufacture his or her own insulin) takes a lot of insulin before eating a meal, there are relatively quick and immediate consequences from not eating food shortly thereafter: dizziness, followed by incoherence and disorientation, unconsciousness, and, if still not dealt with, brain damage. This tends to focus one’s attention. On the other hand, consider something like dental hygiene. If you miss flossing once in a while, your teeth won’t immediately fall out of your head. But if you don’t take regular care of your teeth, eventually they will fall out of your head*. In this case, there isn’t an immediate link between poor behavior and poor health, which can lead to the occasional bout of harmful behavior.

Which leads me to the part of the NY Times story that I’m hung up on (italics mine):

Before the program, Chiquita Parker, a 25-year-old single mother with lupus, too ill to continue her job with special needs children, repeatedly made medication mistakes, although she knows she depends on warfarin to prevent clots than can cause strokes, paralysis, or death.

“I would forget to take it,” and feel “like I couldn’t breathe,” she said. Or she would “take two in a day,” and develop bruises from uncontrolled internal bleeding.

But in the six-month lottery program, she pocketed about $300. “You got something for taking it,” Ms. Parker said. Suddenly, she said, “I was taking it regularly, I was doing so good.”

…”I really went backward,” Ms. Parker said, after her participation ended. “I’m just forgetting all over again.”

I don’t get this. How do you forget to take medication, when, if you don’t, you have difficultly breathing? I would make that an essential part of my day. And the feedback loop here is pretty direct–this isn’t a case of if you don’t take the warfarin for an entire month, bad things happen. I don’t mean to pick on this person at all (I don’t wish lupus on anyone), but I’m having a really hard time understanding this. There’s no mention of side effects in this person’s case (and if there were, they didn’t seem to interfere when money was involved).

So my questions for healthcare providers and public health people are:

1) Is this failure to take medication with relatively proximate consequences common?
2) Do you have any idea why people do this?

Discuss.

*By the way, when is ScienceBlogs getting a toothyologist? Just asking.

Comments

#1 DGKnipfer
June 18, 2010

I commonly forget to take my arthritis medication. By the time my knees start hurting, it’s too late. I’m at work and it’s at home. Of course, when my knees are acting up first thing in the morning I’m much better at remembering to take my meds. To me avoiding pain is a great incentive to take care of myself. But then, I’m not suffering from a life threatening condition like lupus. You would think staying alive is a great incentive to stay on proper meds.
#2 JohnV
June 18, 2010

My parents make due with one of those tackle box-looking things labeled S-M-T-W-T-F-S

If that’s not sufficient maybe there’s a market for a health care phone service where someone calls you at 8 am (or whenever) to remind you to take your medication.
#3 JohnV
June 18, 2010

sigh… that “you” was not directed to anyone in particular. It should have been “calls a person” not “calls you”. Just incase it seemed like I was making some irritating suggestion to you, GKnipfer, I promise I wasn’t.
#4 teenage dreams
June 18, 2010

There’s a movement of clinical psychologists (in the UK at least) into physical health, and a fair amount of their work can be taken up with medication adherance issues in chronic conditions such as asthma, diabetes… There’s a bit of research on it here http://www.iop.kcl.ac.uk/departments/?locator=905#adhere which has some suggestions about why people might not adhere. Mostly it seems to be related ot beliefs about illness and treatments. Which could likely be challenged with CBT, or some other type of therapy, which might even be cheaper and longer lasting than paying people.
#5 Alyssum
June 18, 2010

My morning pill taking is starting to feel like a blur. I take my thyroid hormone when I first wake up. Some days I honestly cannot tell if I am rembering taking it the current morning or the previous morning. I would definitely use a pill box labelled with the days of the week IF I could find one that was child resistant. I think my six year old understands that he should only take medicine if a trusted adult says to. At the same time I really do not want to risk him swallowing a weeks worth of synthroid.
#6 cicely
June 18, 2010

What Alyssum said; when I have a clear, sharp memory of taking my pills, am I remembering today? Yesterday? What an excellent question; probably better to err on the side of caution rather than risk an overdose. The ‘days of the week’ dispenser helps, but very occasionally, I forget to refill it the night after it goes empty, and therefore miss a morning’s pills.
#7 Kalisa Myers
June 18, 2010

Why did you not ask about those nations which have a national healthcare plan?

Do Canadians and Europeans make the same kinds of mistakes?

I believe it is largely an organizational issue. If there is one system in place, the person never runs into money or paperwork snags, if their health needs are truly integrated into their everyday schedule, its no problem.

I know of many many people who screw up their medication because it was always some kind of (significant)inconvenience to ensure themseles a regular supply- hours waiting at the pharmacist because they forgot to re-order it, sneaking follow-up calls to your doctor at work, taking time off you don’t have in order to prioritize your health, needing to take a call you know is from your doctor but your boss is talking to you, then you try to call back but too bad- he’s in the Caymans and you lost your chance to get a badly needed refill.

Why don’t people take their meds?

Because it is much, much, much, harder than it needs to be.

A permanent condition like lupus does not come with automatic permanent care in this country.

As long as sickness is a market, Lupus will drive profit. And nobody will care whether or not the patients are properly medicated- so long as they are insured.

People don’t take their meds properly throughout their lives because in reality,

they can’t.
#8 harrync
June 18, 2010

@#5 You might try this: save an old child-proof bottle; each Sunday, put seven tablets in it. Use it for a week; refill with seven more tablets next Sunday. Can’t remember if you took Thursday’s pill? Let’s see. There should be only two pills left if I took my Thursday pill – oops, three pills left in the weekly bottle – guess I forgot. This works for me. [And you should probably mark the "weekly bottle" so it is easily identifiable.]
#9 eNeMeE
June 18, 2010

I often forget to take my meds in the early stages of them having been prescribed, but once it gets habitual…

Still occaisionally forget, but that’s more because I sometimes have the memory of a distracted gnat.
#10 Robby
June 18, 2010

@kalisa While I agree that national healthcare may be a good idea, I find it a stretch to blame people forgetting their medication on privatized healthcare. It is more likely a simple problem with memory and focus. The payment provides a person with an incentive to be very diligent at keeping track of their medication. If you are sick and need medication, often your symptoms are your reminder, but when your medicine actually works, these symptoms/reminders are removed. Thus it opens up the opportunity to simply forget. The payment allows this reminder to be present once the symptoms/reminders have been removed or lessened.
#11 Diane
June 18, 2010

With me, at 68 years, it’s definitely a money issue. Born with a defective immune system, I’ve been sickly my whole life. I currently take 15 prescription medicines, and when my Medicare part D hits the coverage gap, I cannot take every medicine, every day. So I take some every other day. I try to alternate which pill I take less often. But my brand name drugs would cost nearly $500.00 a month and that kind of expense just isn’t possible for me. I keep wondering when do the “Golden Years” start?
#12 monoboyzmom
June 18, 2010

I am one of those who cannot take any kind of medication, prescription or OTC, on a regular schedule. I can do it for awhile, sometimes even for months, but then I’ll fall off. I think the incentive of money would make it seem more like it’s a job, and when you’re directed to do something on your job, you tend to do it (unless you’re a crappy employee).
Warfarin can be trickier than your average medication, though. I once was prescribed it for prevention of further blood clots. I had to have regular blood draws for a PT test, after which my medication would be adjusted. I was put on a schedule where I had take different amounts daily, like taking one-and-a-half pills for two days, then one pill for a day, then maybe two pills for a day. It was confusing and too hard to keep up with, so I just quit and hoped for the best. Turned out the pulmonary embolism was caused by oral contraceptives, which I could never seem to take regularly, and would take the ones I missed plus the one I should have been taking when I remembered, so I overdosed.
I figured my inability to take even calcium regularly has something to do with my bipolar disorder.
#13 Art
June 19, 2010

There is also the simple matter of conscious or unconscious resentment over being told what to do by an expert you don’t have a deep abiding trust in over an issue that you don’t fully understand. The difference between a tolerable and intolerable situation often has to do with how much control you feel you have.

Talking to doctors people usually want to feel like they participating and making decisions. If an MD presents options patients feel they have some control. A doctor that fails to engage the patient and pronounces the course from on high builds up a store of resentment.

Subconsciously every time a patient fails to follow directions, and the sky doesn’t fall, there is a feeling they are ‘getting away with’ something. Missing doses and improvising on the standard treatment plan allows the patient to feel that they have some control and that the doctor/s don’t know everything.

You can see the same process when a child is told to be in by a set time. The kid will try to push the limit. At first waiting for the last second. Later, if the sky hasn’t fallen, they come in just a tiny bit late. Always trying to see what they can get away with. A way of exerting control and showing they are special.

Failing to take medications is childish, and often self-destructive, but it is also very human.

Patients are far more likely to comply if they feel they have had a hand in the decision instead of being passively along for the ride. Even if the choice they make is only something very trivial, like tablet versus capsule, or brand name versus generic, asking their choice can make them feel they are engaged, exerting some control, and actively participating in their healthcare.

Kids are the same way. A child is far less likely to complain and resist wearing a set of clothes if they were given a choice. Even if the choice was outfit-A versus outfit-B.
#14 Barb
June 19, 2010

Compliance is a tricky issue. Some medications have to be taken in a specific way (with meals, fasting, an hour before eating, etc.), and some need to be consistent to be at an effective dose (once every 6 hours AND WE MEAN IT, or once a day, or once a month. Some patients can’t afford to take their medication as prescribed and may or may not know the drawbacks of cutting back but feel they have no choice. Others, as mentioned, don’t like to be told what to do by someone who hasn’t explained their reasoning. And some people really hate the side effects caused by the medication regardless of how much more healthy it may make them in the long run. This last issue is particularly important for treatment of mental illness.

But a big part of compliance is simply not wanting to regard oneself as being dependent on medication. As someone who has two chronic conditions (depression and asthma), I know that it took me till my 30s to come to an acceptance that I was going to take medications daily for the rest of my life in order to stay, uhm, alive. When I accepted that, all the issues about remembering to take the meds fell away. Of course, it also made me much more serious about working with my doctors to find the right drug regime, to keep doses as low as possible, and to avoid as many side effects as possible. All of that has made me feel more engaged in managing my conditions, which ties to a sense of empowerment in taking the meds. I’m the one managing my health, not my doctor, not the meds.
#15 DGKnipfer
June 21, 2010

JohnV,

I didn’t take it as an accusation at me. My wife uses one of those 7 day pill trays and I probably should too even though I only have one daily med. It just seems silly for one pill. It’s not, but it feels like it.
#16 OleanderTea
June 21, 2010

I apologise in advance for the length of this reply!

I sometimes don’t follow instructions because the medication side effects eventually outweigh the benefits. For example — I’m a lifelong asthmatic, taking Advair and Singulair and a rescue inhaler and have a nebulizer for emergency use. I do track my peak flow, so I can tell when things will go sideways.

And still, three or four times per year, I have a flare-up that is beyond adding in the nebulizer. The flare-ups are due to weather, not a damn thing I can do to prevent them.

And that’s when I go to my doc, and have to go on the dreaded prednisone taper. My doc uses a taper of 60-60-50-50-40-40 mg, etc., down to 10 mg.

Day one is great. Within six hours, I can breathe again. Day two is also good. Plus my skin looks fabulous!

But then the prednisone demons come to visit. By the end of day two, I’m hyper; I also have insomnia, a migraine/splitting headache like a giant drill bit going into my skull, back pain, and am sweating like a pig. The morning of day three, I still have all of day two’s symptoms, and massive GERD, weepiness, paranoia, and out-of-control, gut-churning hunger. As in, I could eat my desk. Basically, it’s PMDD times fifty for most of the time I take the meds.

Now, what helps with much of this, and makes it easier for me to get through my day without screaming, crying, and generally acting like a lunatic, is Xanax. But my doc acts like Xanax is crack, even when I tell her that I’d need it for ten days, and no more. So…what then? And what about the GERD that’s not touched by anything on the market today, or a bland diet w/o caffeine? And the sweating that makes me look like a detoxing junkie?

Once my breathing is stable, I taper the meds. End of story. I’ve been asthmatic for nearly 40 years, and my allergist taught me years ago how to taper safely. But I’m always left knowing that I’m not always taking it as prescribed.

Also, even relatively benign meds have unpleasant side effects. If I take Advair 100/50 BID, I’m fine. If I take the 250/50 BID, I get esophageal thrush, even with doing the same rinsing, the same eating yogurt daily, all of it. And thrush hurts. But again, my GP looks at me like I’m nuts when I tell her this. (I think she’s not used to educated patients.) So I don’t take anything higher than the 100/50 dose.

I don’t feel that I can address these side effects with my doc, and I’m on the second doctor since moving to a new area two years ago. This isn’t normal for me (I had the same allergist for twenty-plus years back home, and the same GP for a decade). And not having the relationship where I can tell the doc what’s wrong underneath it all is dispiriting, to say the least.

Hm, on review I don’t know what general category that all falls into. Maybe we count one for “crappy side effects” and another for “doctor-patient relationship”. But it was certainly cathartic!
#17 Nico
June 21, 2010

I have asthma and I know what happens if I start skipping regular meds.

But I at least have a couple days wiggle room, and some days, like others have said, if you’re taking doses, you sometimes hit autopilot and then its “did I or didn’t I?”

But hey, we’re pretty good in this house, we even make the dog finish her entire course of antibiotics she needed recently. So I’d guess we’re fairly compliant on the whole.

We don’t have cost issues, re medications, between universal care and good prescription coverage, skipping doses due to drug costs isn’t an issue.
#18 kathy
June 21, 2010

Some folks with lupus can, at times, suffer from cognitive impairment. They have trouble sometimes with short term memory and also storing thoughts from short term to long term memory. THAT is how a lupus sufferer can “forget” their meds. How a person can remember to take them are the usual tricks people use: calendar aids, storing meds next to their coffee can for a.m. coffee, putting them next to their car keys, etc. All the usual stuff can help.
#19 Cure4Lupus
June 29, 2010

I have Lupus and I forget to take pills all the time. I have 52 pills to take everyday. I do the weekly setup but I often make mistakes doing that. Then I will miss a dose at least once a week. By the time I realize it, it’s time for the next dose. I know part of it is psycological rebellion. Sometimes I just refuse to take them right at that moment. I get so fed up with it that I just refuse to even think about it. I know my limits, I know how many of each pill I can miss without getting really sick. If I do get really sick I can usually find a mistake I made making up my weekly pills. Payment might help. Maybe it would give me a push to think about it when I can’t find the motivation inside myself. It would probably help with mistakes also, I would pay closer attention. I should do it anyway I mean my health is worth a lot more that a few bucks, but I get angry that my body has betrayed me and the last thing I want to do is care for it. A third issue is cognitive impairment. It causes both mistakes in making up pills as well as in taking them. I have taken morning pills at bed time, double taken doses and forgoten pills for a whole day due to “Lupus Fog”.