A reader wrote that I don't discuss compliance per se in this site. A Guelph family member recently got me to write a top ten list that will improve compliance and so I've copied it to this page for everyone. Compliance is more than just taking medication as prescribed and noncompliance is not unique to schizophrenia, but in schizophrenia noncompliance almost always leads very serious problems for the individual and their family. Noncompliance isn't higher in schizophrenia than other medical conditions, but when 40% of the people with schizophrenia don't take their medication as prescribed, crimes caused by people in psychosis tend to end up on the front page of the local newspaper a lot. Noncompliance gives schizophrenia a bad name, but the most serious loss is the one the noncompliant individual experiences in their own life.
Compliance doesn't always make very much sense to people recovering from illness. For one thing once they feel better they no longer see the need for "dangerous" medication that affects their brain. More importantly though compliance is not seen as a solution to what the individual considers important to them, whether that be employment, romance, friends, or school. Some people have extreme difficulty in understanding what a mental illness is, and particularly as something that they have, even though they have a long history of repeated hospitalization. They may feel persecuted and be angry that they are repeatedly hospitalized, for what to them seems to be no apparent reason. Their parents are often the people that facilitate the hospitalizations. They don't understand the criteria that leads to hospitalization.
1 Mental illness by definition causes disability. Some people have regular conversation with angels, and follow the advice the angels give them, but their rent gets paid, the kids eat regularly and go to school, and the house is clean. When someone experiences a mental illness their day to day functioning becomes very difficult and almost everyone experiencing an untreated mental illness would identify a "problem" they are dealing with. It could be about money, the police, landlords, school, friends and/or lovers. There is usually some problem of some sort. Once that is identified people can associate a solution to the problem with compliance to medication. Medication will always lead to an improvement in quality of life and will tend to resolve the problems the individual admits is causing him/her concern.
2 Side effects are probably the single largest reason for noncompliance. If side effects are intolerable, there is no improvement in quality of life. You need an open honest line of communication with the treating physician, until a medication at a therapeutic dose is found that the individual is comfortable with. People are reluctant to talk about side effects that are very personal, like sexual side effects, with anyone. Psychiatrists can have trouble developing a therapeutic relationship where those side effects will be discussed, and it's important they do since most people would stop taking a medication that they thought was making them impotent. Weight gain is one of the most common side effects now and can lead to disturbing changes in the life of an individual.
3 Most medication is a single dose a day. Even this can be a very difficult regime to follow, because there is no immediate effect from taking medication. A seven day docette will help and a regular routine to taking medication will help.. You fill the docette once a week, and you place it somewhere where you will see it at the time you regularly take the medication. If for example they are to take it before bed, because the medication is sedating, then the docette could be on the bathroom counter where it will be seen when the individual showers and/or brushes their teeth before going to bed. If the medication needs to be taken at dinner, the docette can be left on the kitchen counter. Etc.
4 People will tend to follow the recommendations of the people they trust most of all. If everyone the individual loves and trusts, says the same thing. i.e. that they should take the medication the doctor recommends for as long as the doctor recommends, the individual has no support for noncompliance. It's important to involve everyone the individual loves and trusts in support for the individual to be compliant. That includes family siblings, grandparents, aunts and uncles, close friends, romantic relationships. Mental health workers are faced with a very difficult scenario if one of the parents is supporting the individual in noncompliance because that parent doubts the safety or efficacy of the medication. If the individual sees medication as a sign of weakness because of the peer pressure they experience as a young male, then he will be supported in noncompliance. Everybody has to agree that compliance is the best solution, and essential to a fast recovery.
5 Compliance really means more than just taking medication as prescribed. It includes the realization that substance abuse will interfere with recovery and interfere with the efficacy of medication in relieving symptoms. Absolute abstinence is best, but harm reduction is often what you end up with. Reducing the consumption of alcohol, marijuana, and other illict and over the counter drugs is an essential component of compliance. It can also be difficult to achieve with young males, whose very identity is associated with drug use. Their social network can be held together only by the consumption of recreational drugs. These patients need to establish other interests and spend their time doing other things that give them greater pleasure, which can be a daunting task for someone who is recovering from an untreated period of mental illness. Personally I don't know any easy solutions. Romance can be a very powerful pleasure, but someone experiencing disability and trouble in day to day functioning, may lack the skills and self esteem to engage in romantic relationships. The relationship that someone develops with alcohol and drugs is an intense and reliable experience. It is supported and reinforced by a social network of friends who also consume drugs and alcohol. They need to develop a stronger relationship with someone or something that is not self destructive, and just as reliable.
6 Young people taking medication for the first time face particular issues vis-à-vis compliance. At that age the idea of taking medication for the rest of their life is frightening. It is often useful to think more short term. If they are being treated for psychosis they may only need to take medication for a year or two. Depression is often less. It is fairly standard practice to treat every psychosis, no matter what the cause, for one year, and then reevaluate the need for medication. If the individual has had a full recovery of function, the treating physician may gradually reduce the dose of medication to nothing. There are over a hundred medical conditions that can cause psychosis and they look more or less identical in the emergency room. Substance abuse can induce psychosis. Women can develop a post partum psychosis. For young people it is more important to focus on the psychosis rather than the cause, which may not be as clear. Compliance to medication in this case is insurance against the psychosis coming back in the next year. The year following psychosis is then only a vulnerable period in the individual's life when psychosis may return, and medication can prevent that, as will abstinence from mood altering drugs, like alcohol and marijuana.
7 Young people experiencing a first psychosis may not yet be frightened by their delusions and hallucinations. They may feel they have invested their time and energy in something interesting and out of the ordinary, something special. They may find it very difficult to lose their trust in these special processes they are experiencing, because they have not become frightened by them yet. The process of losing trust in something you have come to believe that is much more powerful than you and especially interested in you is very painful, and usually means very significant personal losses. Delusions and hallucinations support you in the belief that you are very special, and that powerful forces know you are very special, and even on medication individuals will be very reluctant to give that up. Medication can become a barrier to the relationship they have that has not turned vicious yet. In "A Beautiful Mind" Nash found great comfort in his roommate, who he talked about all the time with his wife Alisha. It was only later in his untreated illness that his delusions and hallucinations became very frightening. People need to be able to identify an unpleasant component of their experience, that medication will control, that is fundamentally more important than the parts of their experience they are reluctant to give up. The trust they have in these powerful forces, and the future they imagine as a result, can be very seductive, and much more attractive than what they experience on medication, which is almost a failure on their part by comparison.
8 Older patients with well established diagnoses face a different scenario. They will often experience what is probably a permanent disability, leading to unemployment, and considerable social isolation. The isolation can mean they have no friends of any sort. Compliance will generally be improved as these people become comfortable with people who are compliant. There will be more support for compliance as they develop relationships with people who are compliant, for similar reasons to item number 4. Compliance can still be irregular because the individual doesn't manage their own illness. Other people are intensely involved in maintaining compliance. These people may have very little hope for the future and hence no real reason to be compliant. One of the more powerful ways to ensure compliance is to interest someone in their own future. This has been coming out in the literature as "The Recovery Model". Recovery is seen as an individual experience. It's seen as a method of delivering services. It's seen as the point where an individual has hope. They have "recovered" when they feel they have got their life back, even though they are very likely to remain unemployed and disabled. Someone who has reason to live, and someone who participates in the community, needs to reduce and adapt to disability as much as possible. There will be much more motivation to be compliant because it is the simplest and most effective way to reduce and adapt to disability. It is much harder to make significant lifestyle changes like a regular exercise program, regular healthy meals, quitting smoking, etc. hence the problem with substance abuse.
9 Compliance will tend to be rewarded with improved quality of life, which may happen very gradually, but will happen none the less. When an individual becomes capable of part time employment and gets paid for it, there are significant incentives to being compliant. The people most likely to be noncompliant are the people who have nothing material to lose. Employment is very therapeutic in many ways. It gives an individual structure to their day. It gets them out of the house interacting with other people. They have accomplishments they are paid for at the end of the day. They can spend that money on improving their quality of their life, whether it be music, restaurants, clothes, etc. People who need to be compliant may need to be reminded of what they would lose if they were rehospitalized. Hospitalization is an expensive service the government provides to ensure the safety of the individual when they can no longer take care of themselves. The ICU beds of a psychiatric ward cost $300-$600 a day. People are not hospitalized unless they absolutely have to be partly because it interrupts with an individual's life. When you have something to lose, whether it be good housing, part time employment, family support, a romantic relationship, school courses, you're much less likely to take the risk of noncompliance. One of the better ways to ensure compliance is realize what you stand to lose if you become ill again
10 People need to be brutally honest with their treating physician. If they have become noncompliant they need encouragement to continue seeing the physician, and encouragement to be honest with him/her. Often someone will relapse because of noncompliance, and when asked about compliance will lie and say that they have always taken the medication as prescribed. The physician can only assume that the dose was not strong enough and increase the amount he/she expects the individual will take on discharge. When that happens the individual is even less likely to be compliant because they know they are expected to take an even greater amount of something they became unwilling to take in the first place. No one will attempt to blame an individual for noncompliance. They are much more likely to try and understand why compliance was not possible for the individual. In particular they will ask about side effects, which would only increase if the dose of medication was increased.
11 The need for daily medication is often seen as a sign of weakness and inferiority. People don't see medication as the state of the art technology it really is. Compliance is not just an issue in the treatment of mental illness. It's an issue for a wide variety of conditions that cannot be cured but can be treated. Parents and grandparents are likely to be taking daily medication for a variety of conditions they could die from if they didn't, including high cholesterol, high blood pressure, and type 2 diabetes. Compliance for these relatives is extending their life, and the individual is grateful for the medication that improves their quality of life. Lifestyle changes are also often required to extend life and improve quality of life, like weight loss, and daily exercise. Treatment for psychotic disorders are no different, and from what I've seen, people tend to experience a significant improvement in their quality of life each year they continue to be compliant. It can be difficult for people to believe that, particularly if they see their disability (the problems they identify), as only temporary and unrelated to psychiatry per se. Someone with high blood pressure though experiences something very similar. When they take their medication they have normal blood pressure and start to believe they no longer need the medication because their blood pressure is back to normal, which it is as long as they take the medication.
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