|Chapter 3: How Do Patients Choose To Take a Medication?
(An excerpt from "Improving Medication Adherence: How to Talk with Patients About Their Medications" by Shawn Christopher Shea, MD published by Lippincott, Williams & Wilkins)
The "Great Debate" in Theory
Inside each patient contemplating taking a medication or deciding to stay on it, a debate is waged. For patients who feel most comfortable passively accepting the recommendations of their doctor, it is a relatively quiet matter, without much ado. For patients, who feel more comfortable aggressively evaluating their physician's recommendations, it can be a rather raucous affair, sometimes with much ado about everything. Most patients have a healthy admixture of both perspectives, which enhances their likelihood of being well informed consumers. But the process of choosing to put a foreign substance into one's body is always a complex one.
It is as if there were dueling lawyers inside the courtroom of each patient's mind. One lawyer sees only the very real benefits of medications and taps into the deep leanings of the human spirit for almost magical relief, as Sir William Osler describes above. The other sees only the very real dangers of medications and taps into the equally deep doubtings of the human psyche, as Oliver Wendell Holmes so acerbically attests. Across this wide spectrum the bottom line remains the same for all patients ultimately they have to make a choice.
It is not an easy choice. The data are sometimes conflicting. Determining if the advice of the physician is biased or unbiased can be difficult. To return to our courtroom analogy, is this expert witness a "hired gun" or a "stalwart advocate" for truth. How is a patient to know for sure? Understanding how patients make this decision is at the very core of helping them to wisely decide whether or not to start a medicine. Obviously it is to our benefit to spend considerable time addressing the process that lies at the very center of this decision: "How do patients choose to take a medication?"
The "Choice Triad"
In my workshops for primary care physicians, specialists, and mental health professionals, I have had the rare opportunity to ask the members of my audience this exact same question. The results have been remarkably similar. Physicians and nurses, from all around the country, tell me that they take medications for themselves if the following three criteria are met:
Nothing startling here. In all of the workshops I've given, I have never met a physician, nurse, clinical pharmacist, physician's assistant, or case manager who would ever take a medication (outside of "meds" such as vitamins or vaccines) unless they thought that there was something wrong with them and felt motivated to get help with the problem via the use of a medication. Nor have I ever met a clinician in all of my workshops, who would ever take a medicine in which he or she thought the cons outweighed the pros. Why would any intelligent person do so? And so it is with our patients.
For ease of discussion we will refer to these three steps, that a patient must navigate before trying a new medication (as well as staying on an old one), as the "Choice Triad". Over and over again in the rest of this book, we will find ourselves returning to this Choice Triad, for an understanding of its nuances will provide a rich soil from which to transform our patients' hesitancies and fears about medications.
The "Great Debate" in Actual Practice
Now let's take a look at a very real patient in a very real setting with a very real disease. How many patients, in the middle of their first break of schizophrenia, think that there is anything wrong with them? Having done this work for some twenty-five years, I can tell you - not many. So when a patient, perhaps a terrified adolescent male of nineteen, tells me - "I am not going to take that medicine, Dr. Shea. No way. I don't need it. Get it out of here. No way. I'm not taking it." - is he being resistant or oppositional in the sense of purposefully trying to antagonize me?
As we hinted at in our last chapter, I don't see why one would make that supposition. Such a patient is seldom being oppositional. Instead, he believes, deep in his gut, without any hesitancy, that there is absolutely nothing wrong with him. He simply disagrees with me. Under these circumstances - a patient strongly disagrees with the first step in the Choice Triad - it would be quite foolish for the patient to take the medicine. It would not be a logical decision. Exactly like ourselves, if we did not feel that there was anything wrong, none of us would take a medication, especially an antipsychotic that could cause tardive dyskinesia and make our tongue dart in and out of our mouths like a lizard for the rest of our lives - so why should a patient do so?
I, personally would never take a medication unless I felt there was something clearly wrong with me. In this instance, refusing the antipsychotic is not so much evidence of a person being illogical or oppositional, as it is evidence of a person being prudent, if, indeed, he or she thinks that there is nothing wrong. The patient is making the exact same choice that I would make if I shared the same belief. It just so happens that in this case, I don't.
Once this insight is understood by prescribing clinicians, it follows suit that they develop a new-found respect for the patient's decision making process it’s the same as their own - while not necessarily agreeing with the patient's database from which the decision was made or the decision itself for that matter. Our role becomes not one of making a so-called "resistant" or "oppositional" patient become compliant, but of helping a patient with poor information become better informed and motivated for change. We become teachers, and all good teachers are great motivators. Our goal is to increase our patients' genuine interest in trying a medication or staying on it after it has been started.
Over the years, I have found that once medical students, residents, and nurses truly understand this simple fact that patients refusing meds are often making the same decision we would make if we shared their belief set - it is rather remarkable how deeply it changes their attitudes towards "resistant" patients. More importantly, it changes how they come across to those patients who don't want to take medications. The oppositional feelings that we said could trigger medication nonadherence described in the last chapter, seem to melt away because the clinician realizes that the patient is making the wisest decision possible given the belief set that the patient has at the time.
I am reminded of a quote by Armond Nicholi, Jr. a well known psychiatrist that, "whether the patient is young or old, neatly groomed or disheveled, outgoing or withdrawn, articulate, highly integrated or totally disintegrated, of high or low socioeconomic status, the skilled clinician realizes that the patient, as a fellow human being, is considerably more like himself than he is different."3
Let us now take this reasoning much closer to home for the typical primary care physician functioning in a hectic clinic setting. Let us look, not at a patient with schizophrenia patients well known for refusing meds but to a patient with diabetes.
We will look at a middle-aged woman, who is fairly symptom free, except for unusually frequent daytime urination, nighttime awakening with trips to the bathroom, and the recent onset of a sensation of feeling weary. Moderately overweight, and out of condition, the level of her blood sugar suggests the need not only of behavioral interventions such as diet and exercise, but also the use of an oral hypoglycemic agent.
How many of these early diabetic patients starting on a long term med ripe with potential side-effects, truly believe, in their guts, that they have a serious disease on board, one that can have crippling consequences and even have death as an endpoint? Once again, I've had the luxury of asking many hundreds of primary care physicians this exact question during my workshops. Even as I'm phrasing the question, I frequently see many physicians nodding their heads in agreement with the point, for they quickly recognize that the answer is the same one we saw in our patient suffering from schizophrenia not many.
Indeed, patients whose diseases show minimal symptoms at first, such as early diabetes or hyperlipidemia, are notorious for "noncompliance." Early hypertension, where there is only an abnormal number magically culled from a blood pressure cuff as evidence of disease, may be the king of nonadherence problems for just such a reason.
Sometimes, in my workshops, after the above point has been made by a member of the audience there follows a silence, and then a physician will animatedly raise a hand commenting, "I have a caveat to that, though. The one set of patients with diabetes who do stay on their meds are those patients who have a parent with severe diabetes or a friend with it. You know, if their mom doesn't have a leg from the knee down or their uncle has a pipe in his arm from dialysis, those patients get it. They take the meds, and they often stay on them almost religiously."
And so our point is made.
Exactly as our principles, outlined above suggest, these patients will choose to start the med because they believe there really is something wrong with them. They have a vivid picture of what could happen to them that motivates them to try the med. And they project that whatever the cons of this med may be, it probably isn't as bad as the potential dangers of their disease - renal dialysis, stroke, blindness.
It is not that these patients are smarter or less oppositional than our more typical "resistant" patients with early diabetes, who refuse meds or who, more commonly, are poorly compliant with them. It simply is that these patients truly believe there is something wrong. If they didn't, they wouldn't be agreeing to the med.
More importantly, if our "resistant" patients could be led to understand that there is something seriously wrong (i.e. they come to believe in the first step of the Choice Triad) there is a very good chance that a large chunk of them will take us up on our recommendation for an oral hypoglycemic agent. They will have developed a sincere interest in the medication because of their personal belief (as opposed to our professional belief) that it could stave off serious problems. Patients take medications because of their beliefs, not ours.
From Theory to Practice
Now that we have a better understanding, not only of the nature of medication nonadherence, but of the internal thinking that leads to it, we have developed a reasonably sound theory of nonadherence and how to transform it. We now need to put our theory to the test. Specifically, as we stated earlier, a good theory will generate specific interviewing techniques and strategies that will help us to increase our patients' interest in both trying specific medications and staying on them. Will our theory do this?
To find out, let us return for a moment to the second step in the Choice Triad - the patient feels motivated to try to get help with what is wrong through the use of a medication. While discussing this second step in one of my workshops, a pediatrician who specialized in treating kids with asthma proffered the following tip, which I have found to be very useful.
Interviewing Tip #1: Inquiry Into Lost Dreams
He commented that one of the most powerful motivators for these kids, was the obvious one: they wanted relief from their acute asthmatic attacks - symptom relief. But he also had found that there existed another very powerful motivator, that he could tap when his patients were having tough side-effects or fears, that could help them to give their medications a little more time. He felt, and I have found with my own practice, that this same motivator was equally powerful for adults with many different diseases from rheumatoid arthritis to obsessive-compulsive disorder. What is this other powerful motivator that can help to transform nonadherence?
It is the simple fact that for many patients their illnesses have not only given them something - painful symptoms - they have taken something away - their dreams, their livelihoods, their peace of mind. The desire to recover these lost dreams often provides an intense motivation to tolerate difficult side-effects or to overcome the inconvenience or stigmata of taking medications.
He described his interviewing tip as follows:
"I find it useful with my kids with asthma to ask them this question or a variation on it, 'Is there anything that your asthma is keeping you from doing that you really wish you could do again?' What I find with this age group is that there is often a quick answer to this question, and the answer is often related to a sport - say football or soccer.
"What I find to be so useful about this question is that it opens the door for adolescents, who by definition are prone to form oppositional relationships with adults, to tell me what they want me to do for them. They are calling the shots, not me. The oppositional field seems to dissolve away. Meanwhile I gain a deeper insight into their motivation for seeking help from their asthma that goes beyond their desire for symptom relief. I might never have know this powerful motivator had I not asked. I can use this knowledge to enhance the adolescent patient's desire both to start a medication and to stay on it.
"First, although I never provide false hope, if I feel it is within reason, I can use this newly uncovered information immediately to help shape a shared agenda with a comment like, 'Now I can't promise this, but I have had some very good luck with helping other students, with asthma like yours, to get back into sports. We have some great meds that can help with that goal. Once again, no promises, but I would like to work with you to see if we might be able to get you back out on that soccer field. How does that sound to you?'
"Secondly, in the future, if there are tough side-effects or the stigma concerns so often seen with kids having to take meds at school become problematic, I can say something like, 'I know you are getting some tough side-effects - and they are tough - fortunately I have some ideas on how we might be able to make them much better, and I don’t' think we have seen the full power of these meds to help you to feel better yet. We are still trying to get you back on that soccer field that we talked about in our first meeting. If you can give me another two weeks to see if I can lower the side-effects and get you some better relief from these attacks, I think I might be able to do that. Is it a deal?'"
Very nice. Very nice indeed. Now there is a useful interviewing question - "Is there anything that your asthma (or whatever disorder is present) is keeping you from doing that you really wish you could do again?" - that can be used - and I have often used it within my own practice - to transform medication nonadherence in the real world of a busy clinic.
The "inquiry into lost dreams" technique was developed directly from asking ourselves about ways of achieving the second step of the Choice Triad. Our model is beginning to show its power. Let us see what happens if we continue to explore the concept of improving motivation which is, essentially the heart of the second step of the Choice Triad. We have already seen that two powerful motivators exist: 1) relief from symptoms and 2) gaining back lost activities and dreams. Our next question is simple, yet potentially filled with great promise, "Are there other motivators we can tap for our patients?"
Interviewing Tip #2: Tapping Family Motivators
A primary care physician, during one of my workshops, shared a tip that I have found to be useful with many patients. His insight also touches upon the usefulness of understanding cross-cultural sensitivities when discussing medication interest. Much of his work was with the Latino population. He found that Latino males often don't want to take care of their disorders, for "taking care of oneself" is viewed as being self-centered. On the other hand, the Latino culture places a profound emphasis upon family ties and responsibilities, which displays itself as an intense belief in taking care of ones family no matter what the cost. Family needs first. Individual needs second.
Whether discussing diabetes, hypertension, or depression, he would try to become familiar with the patient's unique family history, family network, and sense of familial responsibilities. He would then tap this information to design an individualized strategy for motivating his patient.
For instance, let us say the patient lost his own father, who had diabetes, to a myocardial infarction at the age of 51, and that the patient had found this experience to be devastating to him as a child. The physician might proceed as follows:
A lovely tip. In answer to our question, I believe that we have found a third powerful motivator for many patients - their families - that taps a deep rooted sense of love and responsibility. This technique can also be expanded beyond family members. For some patients it is their commitment to their communities and to helping others that stands as a powerful motivator for them to stay healthy and capable of helping. As one would expect this tip is also of great use, not only among the Latino population, but across all cultures when we find individuals with a high sense of responsibility to family or mission.
Interviewing Tip #3: Providing a Visual Reminder for Family Motivation
A primary care nurse from Kansas, Janet Brack, suggested a wonderfully effective extension of the above interviewing technique. Her tip moves us into the realm of nonverbal enforcers of medication motivation. She noted that in smoking sensation programs it is not uncommon to ask participants to place a picture of a loved one on the cigarette pack, itself, to remind them of one of the reasons they are trying to kick the habit - to make sure they are still around to laugh, love , and help their families.
She asked herself, "Why not transfer this technique to the task of improving medication adherence?" She did, and she was impressed with the results:
The Missing Piece of the Puzzle
As we have moved from theory into practice, the power of our model is beginning to emerge. All three of the interviewing techniques we have just developed - from our understanding of the second step of our Choice Triad - are simple, take little time, can be readily named, and easily taught to medical students, nurses, residents, and case managers. We are developing a model that provides concrete interviewing techniques and strategies, that can be of practical use to clinicians as opposed to vague principles such as "empower your patient" that offer little guidance as to the actual method of achieving in practice what is, in theory, undoubtedly an important goal.
One piece to the puzzle missing: We need a word to talk about patient nonadherence, that follows our model and does not set-up, by its very connotation, an oppositional feeling towards the patient , an oppositional feeling that the word noncompliance and to a lesser degree nonadherence seem to generate. In short, we need a name for our model.