A critical issue in supporting some individuals who exhibit challenging behavior is the role of medication. It can be stated categorically that under no circumstances is medication alone a sufficient response to challenging behavior. Environmental supports are always necessary. That is not to suggest, however, that medication should be reserved as an intervention of last resort, only to be employed when all other interventions have failed. Individuals have a clear cut right to timely access to appropriate care. If that appropriate care involves medication, it should be begun as soon as the need is recognized. Failure to provide appropriate medication is no less morally unacceptable than willful overmedication.
With these caveats in mind, there are three scenarios in which medication can be appropriately employed to benefit individuals with challenging behaviors. These scenarios involve: (l) behaviors resulting from or exacerbated by a treatable, biologically based psychiatric disorder, (2) behaviors resulting from or exacerbated by a treatable general medical disorder and (3) short-term management of behaviors which endanger the health or safety of the individual or other persons. These scenarios are outlined in greater detail below. The guidelines given are designed to be a general rubric for psychopharmacologic interventions, not an all-encompassing paradigm defining appropriate care. The expert members of an interdisciplinary team (IDT), such as the psychiatrist, primary care physician, and clinical psychologist, are, in consultation with other team members, the appropriate people to determine the specific details of an individual's medication regimen.
1. Behaviors resulting from or exacerbated by a treatable, biologically based psychiatric disorder:
In the past, it was believed that individuals with developmental disabilities were incapable of being affected by the mental illnesses that afflict the rest of the population. Therefore, any difficult behavior they exhibited was not a symptom of treatable diseases: It was a problem to be suppressed. Antipsychotic medications (known previously as "major tranquilizers") were quite useful in stopping these unwanted activities through the secondary effect of sedation, and they were widely employed.
Subsequently it was realized that this was flawed thinking. Individuals with mental retardation and developmental disabilities are subject to mental illness, and they have the right to receive appropriate medications for their psychiatric problems. Thus, leaders in the field have embarked on a major undertaking - promoting the end of the inappropriate and potentially dangerous use of sedation to suppress unwanted behavior and offering, instead, definitive therapy through the use of appropriate medication.
Providing definitive therapy requires characterization of an individual's mental health problem in the form of a psychiatric diagnostic formulation. Teams working with individuals with developmental disabilities are strongly encouraged to use the latest version of the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association (DSM-IV) to guide the diagnostic process. These criteria remain valid as a general guide for individuals with developmental disabilities, although they may require some modification to accommodate the challenges many individuals face in defining and expressing their thoughts and feelings. Individuals and people who care for and about them (particularly family members) should be integrated into the diagnostic process to the greatest extent possible. Managers and supervisors at provider agencies should recognize that this involvement is critical to achieving a positive outcome and should take all reasonable steps to facilitate this involvement.
Once consensus has been reached on a psychiatric diagnostic formulation, the expert members of the interdisciplinary team such as the psychiatrist, primary care physician, and clinical psychologist can recommend a course of medication tailored to the neurochemical abnormalities associated with a particular DSM.IV disorder (or group of disorders). Information regarding the expected treatment response time, the anticipated changes in target symptoms, and plans for evaluating the outcome of the medication trial should be discussed and documented. In addition, possible adverse outcomes, particularly in terms of potential medication side effects, should be reviewed with the individual (when this can be done in a meaningful fashion) and all other concerned parties and then documented.
In order to ensure that individuals receive high quality care in a timely fashion, it will at times be appropriate for the expert members of the IDT to recommend initiation of more than one medication in either a sequential or concurrent fashion. It may be beneficial for agencies to develop basic medication protocols for frequently encountered diagnoses which outline the spectrum of acceptable initial approaches to therapy. The treatment team can then tailor an individual's therapy within the rubric of the general protocol. Conditions under which it may be acceptable to exceed the conservative treatment parameters outlined in reference manuals such as the Physicians' Desk Reference can be defined. This approach will allow the treatment team to craft an individualized medication regimen with reasonable confidence that it will be acceptable to the reviewing bodies. Reviewers, particularly those with little or no clinical experience, can be confident that the approach is appropriate for the diagnosis. The level of understanding engendered by this approach should facilitate timely completion of the review process and allow the individual access to appropriate care in the shortest possible time frame.
When initiating a new medication, it is important that all members of the treatment team understand what constitutes an adequate therapeutic trial. Medications should be used in adequate dosage for sufficient periods of time before the individual is labeled a nonresponder. Blood levels should be followed if appropriate and may need to be in the high therapeutic range before a response is seen. It should be recognized that some medications may initially make symptoms incrementally worse at low dosage. The treatment team should prospectively identify and implement additional environmental supports which may become necessary during periods of medication change. The potential for drug - drug interactions should be closely monitored, and other medications may need to be eliminated in order to facilitate use of an indicated psychiatric drug. The individual should be monitored for side effects and, when possible, be supported through them, as in many instances they are transient or self-limited. In instances where significant side effects necessitate discontinuation of a medication, a detailed description of the reaction should be documented in the permanent record. In some cases, a team may legitimately undertake a second trial of a medication to see if a previously reported response recurs. This approach may be necessary in individuals reported to have had vaguely characterized adverse reactions to multiple medications in the past.
In order to prevent problems due to sketchy record keeping, it is essential that a detailed summary of the results of a medication trial or series of medication trials be documented in the individual's record. Agencies should designate which team member(s) is responsible for this task and monitor compliance. Information included in such a summary would probably include (1) the diagnostic formulation at the time of the trial, (2) the type of medication, dosage, length of trial, and blood levels achieved, (3) narrative and data detailing response to therapy, (4) any adverse effects noted, and (5) the reasons for discontinuation of medication, including potential confounding factors such as other medications, intercurrent illness, and changes in environment. In some cases, detailed summaries of collected behavioral data with supporting progress notes may be sufficient documentation. Alternatively, agencies may consider developing a specific form to consolidate this information in an easily accessible location in the record.
Once the treatment team has formulated a working diagnosis and treatment plan, most agencies require an independent review panel to authorize the intervention prior to implementation. It is essential that these reviews occur in a timely fashion and do not impede an individual's right to treatment. Processes should be in place that allow a highly expedited review when circumstances warrant an urgent or emergent intervention. In some cases this may require emergency implementation with a retrospective review. In the majority of cases, the review process should be able to be completed within a time frame that allows for diligent review but does not significantly delay initiation of therapy.
Review panels should review the technical aspects of a medication plan at the time it is initiated and then at regular intervals. These administrative reviews should serve as a forum for frank and objective technical discussion of the proposed plan. Strict standards of confidentiality must be maintained to protect individuals' rights and to allow the treatment team to receive candid collegial feedback from an outside objective source. One primary function of this review process is to examine plans for internal congruence. The diagnostic formulation, proposed medication, and level of symptoms should be consistent with one another. Target symptoms being tracked should be specifically defined and relevant to the diagnostic formulation. Dosage ranges and target blood levels should be consistent with current standards of care. Monitoring strategies for commonly encountered adverse effects should be outlined. The proposed length of the trial should be consistent with the known pharmacokinetics and response time of the medications. Finally, the plan should include a detailed summary of concurrent environmental supports and interventions designed to optimize the chances for a successful medication trial. As stated above, medication alone is never a sufficient intervention to address a mental health problem.
2. Behaviors resulting from or exacerbated by a treatable general medical disorder:
Not uncommonly, an individual may exhibit a problem behavior which, on further evaluation, is seen to result from a general medical disorder. In some cases, such as hypothyroidism or lupus, the general medical condition may have a direct effect on the central nervous system. In other cases, individuals may exhibit unusual behaviors because of pain or discomfort. Still others may develop irritability or distractibility leading to aggression or self-injurious behavior because of sleep disturbances or general malaise associated with being chronically or acutely ill. Finally, some individuals may be affected by all of these factors. Treatment teams should attempt to identify these situations as soon as possible.
The primary focus for the treatment team in these cases should be the identification and treatment of the general medical condition. Environmental supports should be in place to help the individual be as comfortable and content as is possible during the course of the illness. The treatment team should work aggressively to identify pain or discomfort in individuals who cannot or will not express it. Pain controlling interventions, including (but not limited to) narcotics or other medications where clinically appropriate, should be vigorously implemented to limit an individual's suffering. All agencies should have clearly stated policies which ensure that all individuals have access to any and all clinically appropriate care, regardless of their age, race, gender, or level of cognitive or physical disability.
It is likely that behaviors that are manifestations of physical illness will subside with treatment of the general medical condition. Some behaviors may have been long-standing problems arising from inappropriately conditioned responses or untreated psychopathology and will return to pre-illness levels of intensity. It is also possible that a period of physical illness may trigger the new onset of mental health problems. The treatment team must keep all these possibilities in mind as they continue to tailor the behavior support plan to meet the individual's changing needs.
It should be clear that medications that lead to an improvement in behavioral manifestations secondary to treatment of a general medical condition should not automatically be defined as psychotropic medications. Psychotropic medications are those whose primary use is to treat diagnosable neuropsychiatric conditions or maladaptive behaviors that cannot yet be adequately characterized in diagnostic terms. A reasonable rule of thumb is that if a medication is being instituted and adjusted based on outcome measures related to a general medical condition (e.g., number of seizures or blood pressure elevation) it is not a psychotropic medication.
3. Short-term management of behaviors which endanger the health or safety of the individual or other persons:
Individuals may at times exhibit behaviors which endanger the health or safety of themselves or of others around them. Some of these episodes may be predictable, as in the case of scheduled medical or dental procedures. If the treatment team agrees by consensus that sedation is an appropriate intervention in this context, it should be given and the fact should be documented in the record. It is important to record the response to sedation as this may become important at a future date.
In other situations, emergency sedation may be necessary to safeguard the health and safety of the individual and other persons. Procedures should be in place to meet these emergency needs. All such interventions should be retrospectively reviewed in order to develop a plan to address the individual's needs in such a way as to minimize or eliminate the need for emergency medications in the future. The treatment team should in particular focus on whether or not the behavior was symptomatic of an unrecognized and/or partially treated mental health or general medical disorder
If this is a possibility, aggressive steps should be taken to proceed with evaluation, diagnosis, and initiation of appropriate treatment and supports. The treatment team should thoroughly document this process in the individual's record and where appropriate submit addenda to the individual's behavior support plan for review and approval.
In conclusion, people who care for and about individuals with developmental disabilities need to be aware of the situations in which the use of medication may be beneficial to an individual. Certain principles must be adhered to when medication use is considered:
By following these principles, treatment teams should be able to provide individuals access to potentially beneficial medications without subjecting them to the excesses of the past. As we work to support individuals with developmental disabilities we must maintain our commitment to provide them with the finest care avail able. Judicious use of medication can help them lead fuller, more satisfying lives - and that is the ultimate goal.
Christopher Gorton is the Medical Director of the Office of Mental Retardation and the Office of Medical Assistance Programs. Harrisburg, PA.
The Pennsylvania Journal on Positive Approaches is published by the Pennsylvania Office of Mental Retardation (OMR) Statewide Training Initiative through Temple University, Institute on Disabilities, University Affiliated Program and Contract Consultants, Inc., 105 Old York Road, New Cumberland, PA 17070. For subscription information, please contact Contract Consultants, Inc. at  774 - 5455. Copyright © 1996 OMR/CCI. All rights reserved.
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