The Truth About Compliance
By: Joshua Koerner

Let’s play Who Said It: "Wouldn’t life be easier if all patients followed prescriptions to the letter? What stops a patient from complying? Why won’t they listen to advice?" Was it Dr. E. Fuller Torrey, America’s leading advocate for forced treatment? The president of NAMI? My mother? Actually, it’s a quote from an article in Progress in Transplantation, the journal of the North American Transplantation Coordinators Organization.

Noncompliance is a serious problem for people who receive other people’s organs; immunosuppressant and antiviral medications need to be maintained throughout the course of a patient’s life, and yet medication compliance has a tendency to worsen over time. This will inevitably lead to organ rejection, and if another organ cannot be found, death. Yet even this reality is not enough to ensure compliance.

Let’s look at a completely different area of medicine. According to the Journal of Clinical Hypertension, "Despite the fact that we have in excess of one hundred drugs for the treatment of hypertension and billions of dollars (12 billion in the United States alone) are spent on the treatment of hypertension annually, blood pressure control is achieved in less than one quarter of hypertensions patients. There are multiple reasons for these poor blood pressure control rates, but one of the most important remains patient compliance."

The title of yet a third article says it all: "Barriers to Colorectal Cancer Screening: Part 1 — Patient Noncompliance."

Noncompliance is a factor throughout all medical specialties, not just mental health. Indeed, the impact is enormous, according to the American Journal of Health-System Pharmacy: "Medication nonadherence poses a major threat to the health and well-being of the US population and is financially very costly. It is estimated that nonadherence to prescribed medications causes nearly 125,000 deaths per year. 10% of hospital and 23% of all nursing-home admissions are linked to nonadherence. A third of all prescriptions are never filled, and over half of all prescriptions that are filled are associated with incorrect administration."

That’s a third of all prescriptions unfilled, half of all prescriptions used incorrectly, not just those for psychotropic meds. One of the great canards of mental health treatment is that mental patients don’t take medications properly because they are mentally ill, and so too cognitively impaired to practice adherence. That’s demonstrably false; if they don’t take their medications properly it’s because they’re no different from transplant patients, hypertension patients, cancer patients or any other kind of patient.

That’s a very, very significant reality because mental patients are treated differently from other kinds of patients. There are no laws mandating the treatment of high blood pressure, no Kendra’s Law’s that compel people to submit to colorectal cancer screening. Noncompliance for those patients is potentially deadly, and yet we allow them to resist treatment. This is not so with people diagnosed with mental illness.

The very word "noncompliance" is stigmatizing. Again, from the American Journal of Health-System Pharmacy: "Although ‘adherence’ is generally recognized in the medical community, ‘compliance’ has more frequently been used. Patient compliance is not synonymous with adherence. Compliance may suggest a passive approach to health care on the part of the patient. This paternalistic view of the patient may not encourage the patient to take an active role in his or her health care and may limit the responsibility the health care practitioner accepts for a less than optimal outcome."

That’s certainly true of many mental health practitioners, in spades. Repeatedly we are given the message that we need to listen to them, they know best, and if we don’t, they’ll chase after us with Assertive Community Treatment teams, take us to court, have us committed to locked inpatient units or placed under supervision in the community.

What’s wrong with that approach? Even if mental patients aren’t different from other patients, every one of these articles makes the case that nonadherence is dangerous, damaging, potentially life threatening. Aren’t we mentally ill the lucky ones because our system cares enough to compel us to comply?

Not exactly. To understand why, it’s necessary to understand why so many people, with so many illnesses, don’t do what their doctors tell them to. Again, from Progress in Transplantation: "Strong evidence exists showing that resistances are also a healthy part of the person’s attempt to cope with life circumstances — even when the resistance pattern is maladaptive. These resistances protect the patient from experiencing cognitive and emotional reactions (unconsciously) deemed to be more threatening than the situation in which he or she already is."

That means that it’s difficult to be a patient of any kind: difficult to be sick, difficult to have someone else’s heart beating inside your chest, or to face the possibility of cancer. It is that much more difficult to have an illness toward which there is widespread cultural fear and approbation. "Lunatic", "whack job", "nut job", "mental case", "head case", "basket case" -- the list of epithets goes on and on. What sane person wouldn’t resist the idea of belonging to society’s lowest caste?

The worst way to respond to nonadherence is coercion, the number one response of the mental health care system. In the case study described in the journal article, a heart transplant patient actually started smoking! Why? The study states: "All too often, well-intentioned efforts to help patients resolve their noncompliance prematurely override their protective defenses and thrust them into greater perceived jeopardy. In response to this new and unwanted assault, patients will resort to oppositional action — an even more entrenched noncompliance."

What’s the solution? In article after article, "patient involvement in their treatment" is highlighted. Whether it’s called "shared decision making" or "providing an environment of cooperation", the research is clear: power and conflict only lead to resistance.

How ironic that power, conflict, force, coercion, and involuntary commitment lie at the heart of the mental health system. Let’s put aside for a moment the sheer unfairness of it, the lack of due process, and the fact that people with mental illness are treated differently from all other patients because the facile response to that argument is "If it saves one life it’s worth it." It doesn’t save lives, not in the long run. It drives people away from help, and makes them more likely to resist in the future. Coercion causes noncompliance. We have the proof.

And we also have proof that the use of force and coercion to deal with noncompliance is a function of prejudice against people with a diagnosis of mental illness. This is how prejudice works: lots of people are cheap, but when a Jewish person is cheap they’re cheap because they’re Jewish. Lots of people steal, but when an African-American person steals they’ve done so because they’re African American. Lots of people object to treatment, but when a person with a diagnosis of mental illness objects to treatment it is because of the diagnosis, and so we have the right to override any of their objections and treat them anyway. That’s not only prejudice, the belief, but also discrimination, the action.

What is productive? For an answer, I quote from Progress in Transplantation: "Techniques such as joining and mirroring prove indispensable in protecting the patient’s ego resources while they develop healthier defenses. The critical issue in joining a patient’s resistance is that the clinician has to truly believe the patient needs his defense, no matter how deleterious its impact may be at the moment. If this is not believed by the clinician, the attempt at joining will be experienced by the patient as patronizing and will heighten (not reduce) the resistance."

I have been treated by specialists in internal medicine, urology, endocrinology, and orthopedics, as well as by a prosthodontist, an endodontist and a periodontist. Yet there is no specialty of medicine that has treated me with such consistent patronization, condescension and contempt as has the field of mental health. They don’t even bother to hide it: it’s like we’re not only delusional but deaf, dumb and blind as well.

The first time I was confined to a locked, inpatient unit I was given medication that made me feel like I was going to climb the walls. I could hardly sit still. It was a very uncomfortable, frightening feeling; I had no control of my own limbs. But the unit doctor was convinced it was all due to my anxiety about being discharged. He made no secret of his disregard for what I was saying. When I finally convinced him to take me off the medication I felt better immediately. During episodes with other medications my vision became unfocused, food tasted like metal and I was fatigued and zoned out. No one ever bothered to alert me that these were possible side effects of the medications I was taking. When I reported them I was told I shouldn’t worry, they would go away eventually, or that they weren’t important given the value of the drug.

After I had been hospitalized a few times it became evident even to my family that I had a high sensitivity to medications. When I was hospitalized in 1986 it was my mother, not I, who reported this to the attending psychiatrist. But even she was treated with the same condescension, the same attitude of Please Don’t Tell Us How To Do Our Job. The result: lithium toxicity, and for only time in my life I had an episode of sleep walking which, thought not particularly traumatic for me, was an unwelcome midnight surprise for the female patient into whose room I walked and upon whose floor I urinated.

In light of experiences like this it’s understandable that I stopped taking all medications as soon as I was no longer under anyone’s direct supervision. I took the drugs whose side effects I knew I could tolerate: pot and cocaine. Of course the result was more hospitalizations but less understanding.

Research states that the feelings of the patient should not be disregarded, that to do so only invites further resistance. Practitioners need to understand why individuals do not want to participate in treatment. They need to address those concerns in ways that validate them. People need to feel they are being understood by their treatment professionals if they are ever to become partners in treatment.

Genuine empathy is in short supply in our current system. It simply isn’t a priority. We mental patients are all sick, the providers have all the answers, and if we don’t follow their orders, there’s always Involuntary Inpatient Commitment, Involuntary Outpatient Commitment, and a whole host of other services called Assisted and Assertive which really boil down to one word: Forced.

Self-care requires commitment of a kind other than involuntary. Recovery is a day-by-day, week-by-week, and month-by-month process. It can never be imposed from without; it needs to develop from within. It needs to be internalized. Recovery is more than just making sure someone is taking a certain pill at a certain time each day. Recovery is knowing your triggers, getting enough sleep, eating right. Recovery is both a process and an awareness. It’s an awareness that is teachable, but that requires support and validation, not force, and it becomes ever more difficult to accept support once "support" has been thrust, unwanted, upon you.

The answer is collaboration. As a journal article on cancer screening puts it, "There is a growing body of literature that suggests that engaging patients to participate in the decision-making process may positively influence preventative health behaviors. Shared decision-making involves a 2-way exchange of information, in which both the provider and the patient discuss their screening preferences after considering the relative risks and benefits of the different options and then arrive at a joint decision regarding which option to implement". A joint decision, not an imposed decision.

It is so easy to tell someone else to disregard medication effects that include weight gain, or lethargy, or sexual dysfunction. I think that every doctor in residency should be required to take medications that mess them up a little — make them fat and spazzy and soft. It’s not the true experience, any more than living in a shelter for a few nights knowing you’re going back to your apartment is the true experience of homelessness. But it would be a start.

The disregard of clinicians for the rational desire to avoid these consequences is unjustifiable. Our mental health system is forever paying lip service to evidence-based practices. There is copious evidence that treatment of any kind requires empathy, consideration, partnership, shared responsibility, and open communication. That means sharing responsibility with people who may in some respects be disordered or delusional. I may have thought aliens were coming to transport mankind to a new planet, but I still could recognize when doctors were treating me with contempt. The aliens are gone, but the bitterness toward clinicians remained for a long time.

References:

Pumilia, CV, (2002). Psychological impact of the physician-patient relationship on compliance: a case study and clinical strategies. Progress in Transplantation, (12)1: 6-10.

Neutel, J. & Smith (2003). Improving patient compliance: A major goal in the management of hypertension. Journal of Clinical Hypertension, (5)2: 127-132.

Schroy III, (2002). Barriers to colorectal screening: Part 1 — patient noncompliance. Medscape General Medicine, 4(2): website.

Peterson, Takiya & Finley, (2003). Meta-Analysis of trial of interventions to improve medication adherence. American Journal of Health-System Pharmacy, 60(7): 657-665.