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Schizophrenia Information > Getting Treatment for People When They Lack Insight into Their Illness

Getting Treatment for People When They Lack Insight into Their Illness

The Consequences of No Treatment or Delayed Treatment

Approximately 40% of people with schizophrenia are unable to understand that they have the disorder, because the part of the brain that is damaged by schizophrenia is also responsible for self-analysis. It's important to note that the person is not "in denial" (which suggest that through education alone the person might understand that they have schizophrenia). With schizophrenia, you are frequently asking the sick brain to diagnose itself, which may simply be impossible. For this reason, involuntary or assisted treatment (a general term used to describe different ways that a person with severe mental illness may be forced against their wishes to accept treatment) may be necessary as a last resort.

It's important to know that there are many other reasons why someone with schizophrenia may not cooperate with treatment. Some of the most common reasons (supported by research within schizophrenia populations) include:

  • Denial and Lack of Insight into Mental Illness
  • Medication side-effects
    • Possible solution - Always communicate with your psychiatrist if you are troubled by side effects - there may be other medications or dosages that you can try. Keeping a medication journal where you document how you react to every medication and dosage you try can be a useful tool for you and your psychiatrist as you work together to find a treatment regimen that is right for you. In general, the atypical antipsychotics tend to cause fewer side effects than the typical (older) ones, although they still have some serious side effect considerations. Weight gain and sedation are among the most troublesome for most consumers.
  • Delusional beliefs about medication (e.g., that it is poison)
  • Cognitive deficits, confusion, disorganization
    • Possible solution - Some types of psychotherapy interventions (for example, cognitive-behavioral therapy) have shown promise in alleviating some of the cognitive symptoms of schizophrenia. We recommend reading this online handbook on Dealing with Cognitive Disfunction, which provides very comprehensive and understandable information on how cognition is affected in people with schizophrenia, how medications may help or hinder cognition, and what non-pharmacological approaches might help improve cognitive function.
  • Poor doctor-patient relationship - this is cited by recent research as a key factor that influences a patient's attitude towards treatment.
  • Fears of becoming medication-dependent or addicted

Some of these situations can be changed for the better with effort and patience. However, for poor insight, sometimes Assisted Treatment is a last-resort option to get someone the help they desperately need.

Who might benefit from assisted treatment, and how does it help?

For the 40-50% of people with severe mental illnesses such as schizophrenia who have only partial or no awareness due to the biological nature of the disease in their brains, a form of assisted treatment (if possible) may be a way to get them the treatment that will help to alleviate their symptoms. After starting an effective treatment, many people start to regain some insight, and may decide to continue the treatment voluntarily.

Getting assisted treatment for an adult who does not consent to it is not easy in the United States. Every state has their own legal statues (review state-by-state committment laws) detailing the conditions under which someone may be involuntarily committed to a hospital facility, which is one of the more extreme forms of assisted treatment. See our FAQ section on this topic for more information about when and how someone might think about involuntary committment for a loved one.

There are other forms of assisted treatment (described below), all of which are also governed by individual state statutes dictating when, how, and by whom they can be enforced

Forms of Assisted Treatment, and how they are beneficial

Out-patient Committment: This is a court-order requiring a patient to comply with a set treatment as a condition for release from a hospital. The penalties for non-compliance are usually set by the court. According to research conducted by Dr. E Fuller Torrey, outpatient committment has been shown to reduce hospital readmission rates by 50-80%. A meta-analysis of assisted treatment results reported that subjects who were bound to out-patient committment generally had fewer hospital days, were more reliable in keeping treatment appointments and taking medications, and had reduced violent behavior.

Conditional Release: Similar to outpatient committment; gives the hospital the authority to judge whether a patient is adequately complying with his/her treatment. If the patient is non-compliant, he/she may be returned to the hospital involuntarily.

Representative Payee: This is a fairly common situation for someone recieving government aid in the form of SSI or SSDI. The court assigns a representative (may be a family member or other primary caretaker) to handle and distribute the checks to the ill person. That representative may decide to make treatment compliance a condition for receiving the monthly checks. Research has shown that people with mental illnesses who's finances are handled by a representative payee have lower rates of homelessness and victimization, fewer number of hospital days, and higher rates of treatment participation.

Guardianship: This is when the court appoints someone else to permanently make decisions for the ill person. However, it can be very difficult to get a legal adult declared incompetent, which is a requirement to obtain guardianship.

Benevolent coercion/Court-ordered treatment: This may be an option if someone with a mental illness has been arrested. The judge may offer that person the option of complying with a treatment program rather than serving jail time. This is probably more likely if the ill person is tried in a mental health court, which are becoming increasingly more common in the United States.

Assertive Case Management: This is a program that is only available state-wide in a few locations (Michigan, Delaware, Wisconsin, Rhode Island, and New Hampshire are the states we know about).A team of professionals manages the treatment of a client, ensuring compliance through various methods (including, in some cases, home visits). The team may also be appointed as representative payees. Learn more about Assertive Case Management from NAMI.

Treatment programs in residential facilities: If the ill person is living in a residential program, treatment compliance may be used as a requirement to maintain residency eligibility. For example, some programs might choose to enforce treatment compliance by taking the stance that their housing is limited to persons with psychiatric disorders, and an individual who chooses not to be in treatment is implying that he/she does not have such a disorder. Therefore, this individual should not qualify for housing reserved for people with these specific diseases.

Psychiatric Advance Directives (PAD): These are legal documents in which the person with the brain disease sets out the treatment he/she wishes to be enforced if he/she should become incompetent. Some form of PAD is available in every U.S. state, however, not all states have explicit statutes standardizing PAD documents, activation, and treatment. In most states, the PAD falls implicitly under the larger category of Advance Directives. Problems may arise during crisis situations because there are no standards dictating when a PAD should become active, exactly how far a treatment team should honor PAD instructions, or what to do if a PAD contains wishes that are judged not to be in the best interests of the patient. Check with your state to determine any laws governing Advance Directives in general, and PADs in particular. Make the document as specific as possible - it may help to hire an attorney to oversee the process.

Usually, a PAD will appoint a representative (maybe a family member or primary caretaker) who will assume temporary responsibility for making treatment decisions while the ill person is incompetent. The document may also state the conditions under which the person considers themselves incompetent - this may be defined by the appearance or severity of certain symptoms, or by conditional situations (for example, spending over $1000 on a credit card by someone with manic-depression might be used as a signal that the person has entered a manic episode, and is unable to make good treatment decisions). In other cases, a doctor, psychiatrist, or a court may be the ones to decide when a person is incompetent, thus activating the directive.

In order to make a psychiatric advance directive work for both the ill person and the family, the agreement must be made well ahead of a crisis, when the person is in a competent state of mind. Moreover, any medical professional or hospital staff who might be involved in future treatment mandated by the directive should be made aware of its existance in advance, and be provided with copies.

See more information, and sample PAD documents, from the Bazelon Center for Mental Health Law

More reading about Psychiatric Advance Directives:

Information about Poor Insight, and Resources to Help Overcome It:

Common Consequences of Non-Treatment of Schizophrenia

News Stories on the Consequences of Untreated Schizophrenia

Argument For Involuntary Treatment

The Risks of Avoiding Involuntary Treatment

Additional Information on Involuntary Treatment




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