When “Adherence” Is A Dirty Word

Recently, I’ve been spending a lot of time reading the literature on “recovery” from mental illness.  Along the way, I’ve been introduced to the writings of Richard Warner and William Anthony, and peer-leaders in the field like Daniel Fisher and Pat Deegan.  Coincidentally, I also learned recently that my local county mental health system will start training patients and providers in Wellness Recovery Action Planning (“WRAP”), a peer-led illness self-management program which promotes autonomy and recovery.

In the interest of “evidence-based medicine,” the developers of WRAP have performed actual controlled trials of this intervention, comparing it to conventional mental health treatment.  In several studies, they have found that patients engaged in a WRAP program are typically more hopeful, more engaged in their recovery, and—quite surprisingly—have fewer psychiatric symptoms than those who are not.

One such paper was published just last month (pdf here).  The investigators showed that WRAP participants in public clinics throughout Ohio were more engaged in “self-advocacy” than patients who were not involved in WRAP, and that this led to improvements in quality of life and—consistent with their earlier studies—a reduction in psychiatric symptoms.  Their measure of “self-advocacy” was the Patient Self-Advocacy Scale (PSAS), “an instrument designed to measure a person’s propensity to engage in self-activism during health care encounters.”

Throughout the intervention, WRAP patients had a consistently higher PSAS score than others.  But their scores were particularly elevated in one subscale: “Mindful Non-Adherence.”

Non-adherence?  I must confess, I did a double-take.  If my years of training in modern psychiatry have taught me one thing, it is that adherence is a primary (yet elusive) goal in patients with serious mental illness.  In fact, the high rate of non-adherence has become the biggest sales pitch for new long-acting injectable antipsychotics like Invega Sustenna.

And now a paper is showing that non-adherence—i.e., the active refusal of medications or other suggestions from one’s doctor—is a good thing.  Really?

Intrigued, I looked more closely at the PSAS scale.  It was developed in 1999 by Dale Brashers of the communications department at the University of Illinois.  The scale was designed not to be a clinical tool, but rather a measure of how people manage interactions with their health care providers.  Their initial studies focused on patients in the HIV-AIDS community (e.g., in organizations like ACT UP) and health care communication patterns among patients who describe themselves as “activists.”

The PSAS scale includes three dimensions:  illness education, assertiveness, and “potential for mindful non-adherence.”  The first two are fairly self-explanatory.  But the third one is defined as “a tendency to reject treatments” or “a willingness to be nonadherent when treatments fail to meet the patient’s expectations.”  Four questions on the PSAS survey assess this potential, including #10: “Sometimes I think I have a better grasp of what I need than my doctor does” and #12: “I don’t always do what my physician or health care worker has asked me to do.”

In the WRAP study published last month, greater agreement with these questions—i.e., greater willingness to be nonadherent—resulted in a greater PSAS score.  I should point out that in a separate analysis, high non-adherence scores were not associated with better clinical outcomes, but education and assertiveness (and overall PSAS scores) were.  Nevertheless, when data suggest that patients might benefit from the active “defiance” of doctors’ orders, we physicians should take this seriously.

We can start by helping patients make reasoned treatment decisions.  The term “mindful non-adherence” implies that the patient knows something valuable, and that he or she is willing to act on this knowledge, against the wishes of the physician.  Few providers would admit that the patient has greater knowledge than the “expert” clinician.  After all, that’s why most of us engage in psychoeducation: to inform, enable, and empower our patients.

However, maybe the matters on which we “educate” our patients are ultimately irrelevant.  Maybe patients don’t want (or need) to know which parts of their brains are affected in psychosis, ADHD, or OCD, or how dopamine blockade reduces hallucinations; they just want strategies to alleviate their suffering.  The same may hold true for other areas of medicine, too.  As discussed in a recent article in the online Harvard Business Review, serious problems may arise when too much information is unloaded on patients without the guidance of a professional or, better yet, a peer who has “been there.”

Mental health care may provide the perfect arena in which to test the hypothesis that patients, when given enough information, know what’s best for themselves in the long run.  In a field where one’s own experience is really all that matters, maybe a return to patient-centered decision-making—what Pat Deegan calls the “dignity of risk” and the “right to failure”—is necessary.  At the very least, we physicians should get comfortable with the fact that, sometimes, a patient saying “no” may be the best prescription possible.

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20 Responses to When “Adherence” Is A Dirty Word

  1. Carol Levy says:

    When I see a physician and he suggests something with which I disagree or am not comfortable my standard reply is “You know I am a non compliant patient” and they usually accept that. I have not done this in a psych setting (and as someone who is not a psych patient and never had to take, absent for chronic pain, psychotropics, I am not personally familiar with being noncompliant in that situation. I would suspect that certain disorders, say schizophrenia, might require compliance moreso then say depression or bipolar; pure speculation on my part.)
    I do know from trying some for the paiin that the side effects can be really awful and well worth the “No. this drug I am not willing to try/stay on.”

  2. Dr. D says:

    It seems like a lot of this has to do with agency, defined by Wikipedia as “the capacity for human beings to make choices and to impose those choices on the world.” It’s a primary goal of many psychodynamic therapists to increase the patient’s agency, and I think it is not surprising that increased agency would correlate with both better outcomes and not just mindlessly doing whatever someone else prescribes.

  3. Agency… and empowerment/self-actualization, too!

    Great post, Dr. Balt… your critical thoughts on these issues are always refreshing!

  4. Kevin Nasky says:

    Carol, I’d like to understand patients like you better. If you proudly claim to be a non-compliant patient, then why do you seek the care of physicians? Many people, disgruntled with traditional medicine, have moved on to alternative providers, self-cures, etc., which I can wholly understand. Whatever gets results, right? But why on God’s green earth would you continue to go to traditional doctors only to reject their treatment recommendations? This strikes me as help-seeking/help-rejecting, which this NEJM classic article nicely explains. Is there another explanation we’re all missing?

    • giannakali says:

      Kevin,
      it need not be all or nothing…

      I seek doctors that will be a full partner in my care…I’m not looking for answers from my doctors…nope…I’m looking for someone who compliments my own research and is willing to learn from me as much as I am from them…and ultimately one that recognizes I’m in charge of my body. I’m a very well educated patient…unfortunately better educated about my health issues than a good number of MDs.

      some MDs can’t handle that, but it’s the wave of the future that patients will be partners…

      I’ve got a condition that few doctors understand…and those that do, well they know we are learning together…they’re the only ones I’ll see if I have a choice these days…the ones that think the can fix me are downright dangerous…and that includes alternative docs, naturopaths etc…

      and guess what? there are some doctors out there that get that a mutual relationship stands to be a much more deeply healing one…you should try it.

    • Discomposed says:

      Sometimes doctors don’t take into account a client’s concerns. If you walk in the door and say, honestly, “I’m non-compliant”, that doctor works with you to better improve your compliance – they actually seem to listen and include you more in determining your treatment when you’re non-compliant. There is, after all, a reason individual to each client that they are not being as compliant as the doctor would prefer, and it’s not always “I felt better”.

      My compliance drops when the doctor doesn’t take my concerns into account. A number of doctors throw pills at you and expect you to take them, not considering that you may have worries that need to be addressed. You may have very specific reasons that you are against taking certain medications, and your doctor should be discussing this with you, but not all doctors do. They get all huffy when you refuse to take what they want to prescribe.

      If I have a high weight, a family history of heart disease, and my current bout of Depression has left me nearly bedridden, would you prescribe a drug that has a high frequency of weight gain, increased risk of certain heart abnormalities, and a strong sedative effect? My doctor did, and he’s an idiot for doing so when there are other drugs that could have been tried first with reduced frequencies of these side effects. When your doctor doesn’t take your personal circumstances into account oftentimes the only way to force the issue is to be non-compliant, to refuse to take the medication he or she prefers. It becomes even more complicated when your doctor doesn’t tell you of the side effects, so you get home and look the medication up, so now when you go to your doctor and haven’t taken the medication he’s upset by it. Of course, had he informed me of the side effects and actually talked to me about the drug none of that would have happened, but he as with many other doctors don’t talk about the side effects with their client.

      When one does take a medication a doctor has prescribed, and the side effects end up being unbearable, do you as a doctor expect your client to continue taking them anyway? Or do you give your client permission to stop taking the medication, or reduce the dosage, until the next appointment? Do you provide your client with instruction on what to do if it’s intolerable? Many doctors are in the first group, the “how dare you stop taking my medications, I don’t care if you had unbearable side effects and couldn’t book an earlier appointment because my schedule was full” group.

      The group who actually study their illnesses, evaluate their various options, spend a lot of time and effort in making sure they know everything about their illness and the many ways to treat it should be fully involved in their treatment plan, in determining what route to take. When a doctor rejects their inclusion, tension in the doctor-client relationship will increase, and non-compliance right along with it. Contrary to your belief, these clients aren’t rejecting your treatment recommendations, they simply want to be included in determining what option works best for them as an individual, and while they may not agree with your initial recommendation we all know that especially with psychiatry there is more than one route to take and they believe that if the two of you put your heads together a solution that suits both parties will be found.

    • Carol Levy says:

      Giannakalli answered for me nicely. It is not all or nothing (and I too have situation doctors have outright said, “I dont have a clue why you have this pain or what causes it, never seen it before- eye movement and usage pain secondary to trigeminal neuralgia which is secondary to a partial sturge weber syndrome.) and non compliance does not mean leaving the traditional route.
      I refuse tests that I feel are unnecessary, for example. That is a form of non compliance. Many of my docs tell me ‘you decide what you want and I will write for it or send you to someone to see if it is appropriate’.
      If a doctor and I work as partners non compliance really becomes ‘let’s look at this together and see what we both think is the best idea’. (And I, too, am pretty knowledgable about my condition. My docs also trust me to not overmedicate if they give me extra meds or, as the best example – I have a sensory cortical brain stimulator implant – 100% experimental. I also have the main computer that is usually given only to docs. I am ‘permitted’ to change the parameters of the stimulation – amount, rate, polarities – because my docs know I am capable of doing this and making decisions for myself. (with their help/knowledge.)
      Kevin, you use the word ‘proudly”. I guess I do have pride that my docs feel I am capable of being their partner. It is the idea of patient and doc being on equal footing when it comes to trust and respect; or as Dr. D write – to increase our agency.

    • B says:

      That only means that I am willing to listen to his advice and decide myself if I want to follow through. I have found myself not taking the prescribed drugs much more often than actually doing it, especially when someone prescribes me antibiotics for a clearly viral infection or changing the dose when I fell the drug is too strong.

  5. Just another anonymous says:

    Wait – is it non compliance/non adherence if a doc says “I want you to take this medication” and you say, “No, I will not take that medication. Everyone I know who took it gained more than 30 lbs” or some other concern. And the doctor does not write the prescription, even though he/she wanted you to take it? I thought it was only non-adherence if you and the doctor at least superficially agreed on the treatment plan, and you got a prescription (in the case of meds, but it could be a light box or exercise etc) but didn’t fill it, or filled it and didn’t take the meds.

  6. Carol Levy says:

    It is not non compliance if you explain why and he does not write for the med. You cannot be noncompliant to something that is not being given. In your example the doc and patient have become partners: this is what I want you to take, no, this is why not, okay I accept your reasons and therefore am not going to prescribe it.

  7. Noncompliant at times just like every other patient on the planet says:

    My priority is not pleasing the physician, it’s doing what I think is in my best interests. Most of the time that means I follow their recommendations, other times I don’t. I go to a physician to get their recommendation not to have them make my decisions for me.

    Reasons I have been noncompliant in the past:

    1. I went to the pharmacy and the drug cost a fortune even with insurance. I left without the prescription.

    2. I needed to take a decongestant. I held Vyvanse because I read it wouldn’t be a good idea to take Vyvanse with the decongestant. I confirmed with the pharmacy that what I read was correct and then I made the decision in the interest of my own safety to hold Vyvanse. I didn’t call the psychiatrist to discuss my holding the medication because it was a holiday, not an emergency, and I did not wish to bother him during a holiday for a non-emergency. I resumed taking Vyvanse when I was through with the decongestant.

    3.Cost benefit analysis. The side effects were bothersome. I couldn’t get back in to see the psychiatrist quickly enough to discuss it, and I don’t like to call and bother physicians when I do not have an appointment. I went with plan b – making my own decision as to whether to continue medication with bothersome side effects or discontinue the medication.

    4. On occasion, I just got sick and tired of taking a particular medication all the time without it seeming to help much so I got lax about taking it.

  8. aek says:

    Compliance, adherence – whatever the term, there is an implicit unbalanced relationship underpinning it, with the physician holding the lion’s share of power and control. But in psychiatry, there is also coercion, retaliation and an adversarial relationship inherent in the psychiatrist-patient relationship.

    Patients learn – often literally painfully and traumatically – that the therapeutic alliance is a fallacy, and that treatments are made to suppress symptoms which are troubling to the physician and others. They not only do not relieve the distress of the patient, but they cause iatrogenic harms.

    This topic is salient because I have been rummaging about in the literature looking for effective help which I have been unable to find to date. I ran across the website and Twitter account of an academic executive coach who published the curriculum for an upcoming conference. And therein lies a close to optimal description of a therapeutic relationship and the tools to help. If one generalizes from organizational leader to fill-in-the-blank to fit oneself, I think it applies as a model to emulate or at least to try to approximate in how it views the client/patient.

    Another seminal piece I ran across is a 1990’s thesis about patients’ perception of stigma relative to mental illness and services. It elegantly and poignantly described the imbalance of power, respect and dehumanization found in almost all types of interactions between patients and treaters. It’s a preliminary qualitative narrative, but it rang very true to my own horrific experiences, and the advice patients had for successful navigation of their distress correlates with what you are describing.

    And in the nursing research literature, I re-read the lament of psychiatric nurses that inpatient psychiatric nursing has devolved into coercive custodial tasks and intrusive direct observation of inmates (patients) without any therapeutic goals or interventions. It acknowledges that what passes as group therapy is not therapeutic and is designed to control patients’ activity/behavior and bide time until they are discharged to another setting. It admits that nurses’ interactions with patients are not only not based on therapeutic communication, but are designed to make patient compliant with taking medications and attending ECT, while keeping staff safe from violence. Period.

    Finally, I take issue with psychiatrists referring to patient education as psychoeducation and themselves as psychopharmacologists. There is nothing different about education of patients from one discipline to another unless one has a different goal in mind for th patient. In this case, I believe it is the use of deceit, dishonesty and coercion to “get” patients to do what the psychiatrist wants versus partnering with patients to determine what their own aims, values and goals are. It’s not for nothin’ that quality of life is never, ever mentioned when discussing patient adherence. In my own case, I was refused access to medical records until there was a significant delay. It was only then that I learned that I had suffered iatrogenic B12 deficiency, anemia, diabetes and a deranged lipid profile. I already knew that I was suffering from EPS and other neuro adverse reactions to drugs which I did not need, and was labeled noncompliant when I c/o of adverse effects – including airway compromise. In spite of repeatedly asking for information about my prescribed medications, nurses always brought generic printed medication handouts which did not provide enough detailed information which would allow me to manage the meds and their intended and unintended effects. When I repeatedly requested Micromedex or the equivalent handouts, I was denied until I accessed a lawyer. The psychologist I was assigned to refused to discuss any and all of my concerns stating that I would see someone as an outpatient and should hold off on addressing issues and concerns until then. But no one worked with me to identify accessible outpatient care. It was a cruel farce from start to finish. Questions to nurses and the social worker were always responded to with the nonanswer of “ask your treatment team”. Huh – none of the nurses and social workers assigned to me were ever on the
    “treatment team” when I asked them questions or had requests about my care. The treatment team is another falsehood used to coerce and control patients.

    At no time was I treated with basic respect, dignity, let alone any acknowledgement of my educational, clinical and administrative background and expertise , and trust/ In return, I learned to distrust everyone I came into contact with and to recognize that my patient status was an adversarial one to that of the physician, staff and hospital. I was deemed a less than human inmate to be manipulated on the whim of the attending and resident team, and manhandled by nursing and non-professional staff. There was no decency – the entire nightmarish experience was indecent and obscene.

    My previous career involved patient advocacy and hospital systems quality improvement. Yet I was unable to advocate effectively for myself, and I could not access an effective patient advocate on my behalf. It took me a long time to wean myself off all medications, find the research-based information I needed to create a diet to reverse the physiologic derangements and to seek help for the physical problems remaining (an infected tooth with a dying root was deliberately ignored, and the psychiatrist refused to consult a dentist, writing in the record that I was histrionic in stating that gabapentin didn’t help with the dental pain – of course I lost the tooth when months later I was finally able to access a dentist – the nerve/root was entirely gone). I was assaulted and battered by multiple hospital employees for refusing a hospital stay and for declining medication. I was treated worse than a prisoner of war. During the time that I was rehabilitating myself from the multiple iatrogenic problems, I was still seeing a psychiatrist and had been assigned to a primary care physician. Neither ever asked me what I was doing relative to self management. When I asked questions about nutrition, pain management, insomnia, etc. neither ever provided me with any useful information or resources. The PCP handed me a list of specialists the office referred to. I contacted a sleep med. specialist, but was unable to get an appointment. Done. I had seen the in-house pain service for disk and facet degeneration and was given meds which had no effect, a joint injection which had no effect, and so I was discharged from the service with no benefit, no self management assistance/guidance and upon reading my records, a big fat stigmatizing psych characterization.

    After having extricated myself from all mental health services, providers and contacts, I am left with an electronic medical record filled with spectacularly wrong information, wrong diagnoses and harmful fictionalized patient narratives. Physician, CYA. I have been unable to receive minimally acceptable care from non-mental health providers using that system-wide EHR as a direct result, and I have been physically and psychologically harmed. I now communicate with providers exclusively in writing so as to have a timedate stamp and a trackable record of communication. Some therapeutic relationship, huh.

    Why would any reasonable person continue to subject oneself to those types of experiences which are the norm and not the exception?

    And these occurred in a nationally recognized “medical mecca” and supposed top flight psychiatric services.

    The links to the studies referenced above are on the reading list page on my blog.

    • ellemint says:

      Aek, VERY well -stated.

      Sad to say, that you are probably not in the minority. I believe this is how most psych patients are commonly treated even at the supposedly most enlightened major treatment centers.

      I’m constantly surprised how difficult it is to even be allowed to “look” at one’s own medical record. For example, I met with a social worker a few days ago, who referred to my notes from a one-time appointment with a psychiatrist. I asked to see the notes and she said no. Why? The notes are about me, at some point, if I pay for them, I can read them. Why all the fuss? It further stigmatizes a process that already is burdened with stigmas.

  9. AA says:

    As one who is probably considered to be non compliant with part of my current medical treatment, I really wish that this word and its cousin “adherence” would get kicked to the curve. It makes it seem like I am this “evil” patient who doesn’t want to cooperate with the doctor when there are many valid reasons why a patient might not do something that was suggested.

    And Kevin, I feel I have a great doctor so just like Gianna said, this is not an either or or situation. She made a reasonable suggestion, I tried it and felt that it worsened my condition. Case closed.

    For other reasons, I have not yet had a followup visit so this can be discussed.

    Regarding my former psychiatrist, one good thing about him is if I chose not to take a med, he was totally supportive of my decision and didn’t try to force the issue.

  10. Altostrata says:

    Outstanding article, Dr. Steve.

    I agree with Dr. D. and others here who have suggested the usual “therapeutic alliance” in psychiatry is dishonest, coercive, and unhealthy for the patient.

    Good mental health includes autonomous decision-making; the biopsychiatric model claims the doctor knows the working of the patient’s brain better than the patient does. The patient’s participation in treatment is almost unnecessary except for supplying the hand and arm that gets the pill in the mouth.

    The doctor’s unquestioning religious faith in the biological model undermines the patient’s autonomy, substituting a relationship where the patient must become utterly dependent on the doctor’s omniscience and, not incidentally, physically dependent on the medications.

    In the early 2000s, the pharmaceutical companies, seeing that a large number of patients quit psychiatric medication due to side effects, moved to stop the profit hemorrhage by emphasizing “compliance.” An avalanche of papers advising doctors how to increase “compliance” was produced. Money was poured into CME for all specialties on the topic. Some of the doctors reading this may recall this training.

    It was here that the recommended length of time to keep patients on antidepressants, for example, became fuzzy, stretching to infinity, “compliance” replacing recovery.

    “Compliance” strategies for doctors included telling patients it takes time for the benefit of medication to emerge, switching patients from drug to drug, and adding drugs to combat side effects (more profit!!!!!).

    You can probably see why, among independently minded patients, “compliance” has become a dirty word.

  11. Judy says:

    This is a nice post and I particularly appreciate the use of the word “adherence.” I noticed that almost every comment left after the post uses the word “compliance.” This word is considered passe (except by some older, ill-informed community-based doctors who don’t know any better), and for good reason. People “comply” with laws and with law enforcement officers. Doctors are not setting laws and they are not officers of the law; they are providing recommendations for medical treatment. You choose whether or not to take those recommendations. There is nothing in the dyad with which to “comply,” and frankly, suggesting that you *do* comply puts physicians on a MUCH higher pedestal… and grants them a much more powerful position over you… than they have earned or deserve. You may “adhere” to their suggestions, or you may ignore them. “Compliance” is a remnant of paternalism and I hope the door hits it… no, SLAMS it… on its way out.

  12. Just another naughty, noncompliant psych patient says:

    Yeah, Judy, you’re right. I’m being kind of cheeky when I use the term non-compliance. I don’t feel I owe it to the physician to comply with anything. I don’t do well with paternalism. The best physicians I’ve had are the ones who are honest with me about what they think while still being aware that the decisions are mine to make.

    The ironic thing is that in trying to be respectful of the psychiatrist’s time by not calling him for a non-emergency on a holiday, and my discontinuing the medication temporarily so I could take something to help me breathe, I may get labelled noncompliant. Can’t win for losing, I guess.

  13. Altostrata says:

    Adherence replaces compliance
    Discontinuation replaces withdrawal
    Diseased brain circuits replace chemical imbalance
    Neuropsychopharmacology replaces biopsychiatry

    Whenever psychiatry wants to obscure what it’s up to, it adds syllables.

  14. [...] When “Adherence” Is A Dirty Word [...]

  15. [...] author of Thought Broadcast, wrote about the topic of medical “adherence” as well. When “Adherence” Is A Dirty Word. It’s worth seeing what a doctor thinks about this topic and the comments after the post are [...]

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