How to help someone who stops taking their medicines

by Dr. Peter Weiden

The problem

Noncompliance is a major reason that neuroleptic drugs are not more effective in keeping people with schizophrenia out of the hospital. Noncompliance accounts for about 40% of all relapse. In addition relapse from noncompliance may be more severe or dangerous than relapse occurring while on neuroleptic medication. Persistent noncompliance may worsen the overall course of the schizophrenic illness, and may eventually make the person less likely to respond to medication. Prescribing clinicians frequently do no toften detect or ask about noncompliance and are not always
good at recognizing when patients stop their medication. They may not recognize noncompliance until the person becomes psychotic and starts reacting to hallucinations. Therefore, you cannot rely solely on your doctor's assessment of the situation. Nonetheless, if possible, it is important to maintain routine contact with the doctor to discuss, among other things, compliance issues.

Differentiate Noncompliance from Nonresponse

When someone relapses, it may be very hard to tell whether the biggest problem is that the medicine doesn't work well enough (nonresponse) or the person is not taking the medication (noncompliance). It is very important to clarify the true cause of relapse because nonresponse to medicine would be handled very differently than noncompliance; for example, clozapine is often
used for nonresponse, and medication by long-acting injection is often used for noncompliance.
It may be hard to differentiate noncompliance from nonresponse because there may be long lag times between stopping medication and losing the benefit. In fact, many people feel better right after stopping their neuroleptic because distressing side effects go away faster than the protective effects of medicine. Noncompliance may be a symptom rather than a cause of relapse. In other
words, many people stop medicine only after they have already begun to get sick. It may seem that noncompliance was the problem, but it really was an aftereffect of nonresponse.

Is the person really non-compliant

Before you consider your relative to be noncompliant, you should first consider whether all of the following 5 conditions are true . Only then should you focus on noncompliance as a problem.

5 Reasons to suspect noncompliance.

• 1. The consumer claims to have stopped medication because of a professional's recommendation. While this may be true in some cases, frequently the report is distorted. Double check with the doctor.
• 2. The consumer is not bothering to obtain medication prescriptions, not going to the pharmacy to fill prescriptions, or indifferent to the logistics of keeping up with a medication regimen.
• 3. The consumer has little or no knowledge of the details of the drug regimen such as color or shape of the pills, frequency of scheduling, etc.
• 4. There is a sudden worsening of dyskinetic (writhing) movements of the mouth or hands without a known change in the medication regimen.
• 5. There is an unexpected improvement in the parkinsons side effects of muscle stiffness, rigidity, tremor, or slowness of movements without any known change in the medication regimen.

The person is at risk to become noncompliant if:

• There is a history of noncompliance under circumstances that match the current situation.
• There are persistent psychotic symptoms, especially paranoia, grandiosity, disordered thinking, and lack of awareness of illness. These kinds of symptoms lead to active medication refusal because they prevent the person from having insight into the need for medication. You may note that this can lead to a "catch 22" vicious cycle of symptoms leading to more noncompliance leading to more symptoms.
• There are persistent negative symptoms that interfere with motivation or energy to follow through with medication. Compared with how the positive psychotic symptoms cause 'noncompliance, negative symptoms cause a passive kind of noncompliance, especially when there is no direct supervision or assistance with the logistical aspects of treatment.
• The person feels stigma and embarrassment over having a mental illness and/or needing to take medication.
• The person believes that medications interfere with achieving one's life goals.
• The person is seeking treatment from a therapist or doctor who does not believe in using medication.
• The person engages in frequent travelling or going away on a short trip for the first time.
• There is the presence of a close friend or family member who doesn't believe in medication or is embarrassed about having a relative on medication.
• The medicine is working so well the person believes they can stop taking it.
• The person is experiencing a job, social, or romantic success after going through tough times while on medication. Then, the person is tempted to move on from the bad times, a process which often includes ditching the medication.
• Someone new comes into the person's social network who is opposed to medication.
• They have a change in the level of medication supervision or are moving from one treatment program to another. (Usually decreased supervision triggers noncompliance, although some people (rare) are more adherent when less supervised).
• The person has to wait a longer than one week between programs, compliance drops off considerably. The person loses the therapist or prescribing doctor; or, any treating person because of vacations, job changes, etc.
• The person has a history of having received a psychoanalytic therapy where taking medication was frowned on. For this person it is difficult to "switch gears" into a more medication oriented approach.
• The person has a dual-diagnosis (schizophrenia and substance abuse). Dually diagnosed patients may stop their medicine to get high because they have been taught that mixing psychiatric drugs with street drugs and/or alcohol is dangerous. They may feel less stigmatized by the label of drug-abuse than the label of mentally ill and therefore these people may stop their medicine and gravitate to a drug-using group to reduce their sense of stigma. In addition, dual-diagnosis patients are more likely to be kicked out of psychiatric programs. As a consequence, it can be more difficult for them to get access to medication treatment alone. Finally, some 12-step programs have a 'no-drug' policy that encourages members trying to give up problematic drugs (ex. alcohol) into giving up all drugs (ex. neuroleptics and antidepressants).

Preventing noncompliance through talk

Don't blame your relative for stopping medication. You may have to set limits or expectations, which is different than blame. The earlier you can detect noncompliance, the better. Ask the person in a non-judgmental and non-threatening way. Make noncompliance normal, perhaps
by talking about a time you did not comply with medication. If you find out that there is noncompliance that you didn't know about, do not punish, blame or scold your relative for leveling with you. Otherwise, it will be the last time you will get an honest answer. It is normal to lie if you really don't want to take medicine but know you'll get in trouble if people find out.
Noncompliance is socially undesirable, but remember that not taking medication is normal. Expect some amount of noncompliance. Ask about why medicines are being rejected without trying to argue the person out of his or her position. Your goal here is just to better understand what the reasons are, even if those reasons are not rational.

Persuasion is better than coercion. Forcing someone to take medication by threats is, at best, a temporary solution that is best left for acute (emergency) situations. It is better to try to find a way to persuade your relative to take medication. If you have read this far, I know that you have
tried this tactic and failed. However, perseverance may work. You should continue to find a perspective on medication that both you and your relative can agree on. Perhaps there are some things covered below that you haven't already tried.

When you try to talk someone into taking medication, remember that not all family members are equally influential. Usually, the person's spouse or boy/girlfriend is most influential, followed by friends, siblings, and (last, of course) parents. You should consider having the person who is most
influential do the talking.

Focus on any possible day-to-day benefit of the drug rather than the "scare the daylights "approach. Day to day benefits may include sleep and anti-anxiety effects, in other words, you don't have to emphasize psychotic symptoms.

Be sensitive to the patient's expression of feelings of embarrassment regarding illness and to the fear that taking medication reflects moral weakness.

Be alert to the early signs of relapse for your relative. Early signs of relapse may have a characteristic pattern. Often, a person's realization about the need for medications will "go out the window" when acute symptoms return. No amount of convincing may work, and the family needs to immediately contact the treatment service or a crisis team.

Try to match the notion of taking medication with achieving one's life goals. Life goals include getting work, finishing school, or having a romantic involvement. The relationship between medication compliance and achieving these kinds of goals often is not apparent to the person asked to take the medication. Find out what they want to accomplish. No matter how unreasonable that goal is, don't deny them the pleasure of having it. Then explain how medicines might help them accomplish their own goals. Try to have uniform agreement about the need for medication within the greater family. Otherwise, the person will naturally seek out the opinion of the family member he or she is most in agreement with; this usually is the family member most opposed to medications. This problem seems more likely to occur in divorced families.

Do not get into a direct confrontation about medicine, especially when your relative is getting sick. Not only will it be counterproductive, a confrontational approach can be very dangerous.

Preventing noncompliance from side effects

Families should understand that neuroleptics cause distressing side effects. Families should be genuinely sympathetic about the side effect problems and the distress they can cause. Ignoring the side effect complaints won't make them go away; indifference may make your relative feel neglected or misunderstood. When you get food poisoning, you avoid the food you associate with the poisoning for a long time (this is called "conditioned avoidance"). People can get a sudden neurologic side effect when starting a neuroleptic medicine called dystonia, which is a muscle cramping or spasm that feels like a bad writer's cramp. The experience of a dystonia is analogous to the experience of food poisoning; the person will avoid the medicine for a long time.

Doctors are often less than forthright about side-effects. They think they are 'protecting' the patient by not fully disclosing side-effects or they are afraid of scaring the consumer out of taking the medicine. This is often counterproductive. When side effects do occur, the patient is often
needlessly scared, because they have not been informed beforehand. A side effect like drymouth or excessive salivation will often be accepted by a consumer as a reasonable price to feel better if they have been warned about it in advance. On the other hand, if they haven't been informed, it may be
scary to them when they experience and force them to decide to discontinue the medication. Be open and honest about side effects.

Akinesia ("feeling like a zombie" being slower and less spontaneous than usual) and akathisia (an internal feeling of restlessness or jitteriness) are the most commonly reported side-effects related to schizophrenia. Both have been associated with noncompliance. Doctors tend to under-recognize and
under-treat these side effects. Families who are disturbed by akinesia (and other side effects) should advocate to the doctor assertively on behalf of their relatives for aggressive side effect treatment. The neurologic side effects should be aggressively managed through adjustment of neuroleptic
dosage or with side effect (antiparkinsonian) medicine. If the side effects are severe or intolerable, your doctor should consider clozapine. Before clozapine, however, your doctor should make sure that the real problem is distress from side effects, not stigma or denial of illness.

Preventing other noncompliance

Believe in compliance - About one-third of people with schizophrenia say that they stay on medicine primarily because other people think it's important. For them, the influence of other people, rather than believing the medication is needed, is the key factor that promotes compliance. An
important thing to remember here is that it is very therapeutic in its own right when the doctor shows concern about why the person doesn't take the medication and shows sensitivity about the side effects of the medication.

Prevent Relapse - Prevention of relapse includes finding the most effective drug and best dose for the person. Aggressive treatment of early signs of relapse is important for preventing the kind of noncompliance that arises during a psychotic episode.

Simplify the Drug Regimen - Complex drug regimens have been consistently shown to be a strong risk factor for noncompliance. Psychotic symptoms and/or problems in thinking often interfere with the patient's ability to follow the prescribed regimen. The regimen may have to be simplified and reviewed in detail, often in the company of a family member. The pharmacist can be a major ally when dealing with this kind of situation.

Make sure transitions are seamless - Minimizing the likelihood of noncompliance down the road starts during inpatient treatment. It is important to arrange for outpatient benefits (e.g., Medicaid), an appropriate living situation, and psychiatric aftercare. Providing concrete directions and reviewing them with the patient can be an effective solution.

Foster The Therapeutic Alliance - Exclusive emphasis on medication is not sufficient. Many aspects of the clinical relationship (e.g., continuity, stability, nurturance, authority) provide consumers with incentives to maintain compliance. The development of a therapeutic alliance can take time and needs to be individualized and flexible. For example, some patients want a doctor who is authoritative and others can't stand that type of doctor. Find a doctor or treatment system that works well with families, especially regarding cross-communication and side-effect management.

Use Hospitals - Use hospitalization as a last resort when you have tried everything else and just can't make a dent on your relative's compliance problem. The goal is to use the hospital to stabilize the person's acute symptoms and then set up a new plan that hopefully can alter the compliance behavior after discharge. Recommend Depot Drug Delivery - Converting from an oral to an injectable (depot) form of neuroleptic may improve compliance. (Haldol and Prolixin are available as in long acting forms).This should be initiated during inpatient hospitalization. Ask the doctor about switching if depot has not been tried. Because inpatient units do not routinely
switch patients from oral to depot, it may be up to the family to push the inpatient clinicians to trying this approach. Depot therapy may be most effective in improving compliance for disorganized patients. While this approach is not guaranteed to improve compliance, it makes it much easier to
track compliance and figure out what is going on. Depot therapy also shifts the medication power struggle out of the home and into the clinic, where it belongs.

Organize the family to present a consistent and coherent message about the families' expectations about compliance. Try to get as many family members as possible to go to psychoeducational sessions or NAMI meetings so that everyone has the same knowledge base.

Be careful not to oversell medications as being curative. Rather, they are the foundation for other rehabilitative efforts.

Try to avoid direct power struggles - In general, it is better to have the doctors or treatment system do the "arm twisting".

Resort to the involuntary commitment process or a mobile crisis team evaluation. While painful, this is much preferable to trying to directly confront your relative about compliance during a crisis. You will feel guilty. Anticipate it. Remember, after involuntary commitment, about two-thirds of the patients say after the fact 'that they understand why they had to be committed, and involuntary commitment usually will not hurt your relationship.

Maintain hope. People can change. Never give up!

This was posted by D.J. Jaffe on behalf of The Alliance for the Mentally
Ill/Friends and Advocates of the Mentally Ill