Susan L Abend, MD, FACP, Executive Director, Healthcare Quality Management Group, Framingham, MA
For those of us who take care of people with intellectual disabilities, its clear that advances in psychopharmacology have helped tremendously over the past twenty years. Advocates have helped us recognize that challenging behaviors may well be evidence of a treatable thought or mood disorder, and this recognition has freed many of our patients from disorganized thought, compulsions, and psychic pain. No longer do caregivers dismiss those with distressing behaviors as having a hopeless consequence of their disability. Indeed, current estimates indicate that approximately 40% of the ID population is diagnosed with a treatable mental illness.
How, then, do we take care of those who exhibit challenging behavior, yet who dont meet criteria for an easily-treatable mental illness? The evidence is overwhelming that these people, too, are given drugs, and lots of them. Estimates indicate that 60% of the ID population is on psychoactive medications, with the majority receiving two or more daily. We are bombarded with recommendations from experts and advertisements for using Drug X to target Specific Behavior Y. Only by reading fine print or searching the literature does a doctor find out that there is considerable question that using psychoactive medications as a first line approach is truly safe and effective. The observation that most people with ID and challenging behavior are given more than one drug, and often more than two, is in itself reasonable evidence that we dont have simple antidotes to specific challenging behavior. Sadly, many doctors often take their patients on an expedition for that magic cocktail- the holy grail of medication combinations that will quiet or decrease the frequency of self injury, or aggression, or agitation.
Is it possible that a challenging behavior is something more than just a psychopathology? Behavior, of course, is a symptom- it is caused by an underlying state or condition; its not a lesion in itself. And it is well documented that in those with ID, challenging behaviors are symptoms of any number of problems, including-but not limited to- treatable psychopathology. These behaviors are common in patients who have physical discomfort, or who are experiencing psychic pain from any number of social or environmental difficulties. So it stands to reason that the construct of Drug X to treat Symptom Y is inherently flawed, because we dont know why Symptom Y is occurring. Weve trained our staff to identify and quantify the symptom, but weve failed to train them to evaluate for evidence of the cause. Without this information, any treatment, including psychotropics, is nothing but arbitrary.
There is another serious problem which needs to be addressed before we continue to try out the latest antidote. Even when psychotropics are effective for managing easily-diagnosed psychiatric disorders in those with average cognition, its clear that they come with a high price: unpleasant and often intolerable neurologic, cardiac, renal and gastrointestinal effects. For those with ID, the effects are often very severe: medication-induced stiffness and other movement disorders cause pain, risk falls, and can result in painful fractures and permanent spinal deformities. Pneumonias are not uncommon, as patients develop swallowing and esophageal dyscoordination from these medications, and stomach contents burn the esophagus and inflame the lungs. Constipation, one of the most common, although frequently undertreated conditions in ID patients, is worsened by almost all of the psychotropic medications.
For many patients with ID, the only mechanism they have for communicating discomfort or pain from an adverse medication reaction is, of course, by displaying challenging behaviors such as agitation, aggression and self-injury. And in a treatment paradigm that focuses only on the management of challenging behavior, the most likely treatment plan for these patients includes, ironically, more psychotropic medication.
This egregious error-the use of a psychotropic medication to target a symptom caused by a psychotropic medication- occurs all too often. Sadly, there is rarely a plan for assessment of medication adverse effects or efficacy. All too often a decrease in the offending behavior, if it occurs at all, is caused by simply rendering the patient too sedated or too stiff to be able to communicate distress.
The challenge for ID advocates in the 21st century is to assure that everyone receives responsible, effective therapy in a safe and accountable environment. To do this, we must undertake four very important tasks. First, we must develop best practice guidelines for the evaluation and management of challenging behaviors. These guidelines should be developed in a multidisciplinary fashion, in an environment free of industry bias and influence, and should include methods for assuring that common causes of challenging behavior are rigorously assessed. Second, we need to develop proper, usable metrics to indicate if a particular treatment is, in fact effective. Such a measurement strategy needs to be multidimensional- eg it must include evidence of improved function and quality of life, rather than simply measure the presence or absence of target symptom. Fourth, we must train our frontline caregivers to appropriately assess and communicate evidence of distress, and help them become vigilant that guidelines are appropriately followed. Finally, we must create mechanisms to formally hold all caregivers-frontline staff as well as prescribers-accountable for performing appropriate processes, and assuring excellent clinical outcomes.
Weve come a long way in caring for patients who suffer with difficult, often injurious behaviors, and our management repertoire has never been greater. Most staff, now vigilant for evidence of mental illness, are now ready for the next level of expertise: to become first-line assurance for error-free, responsible, safe medication management. With clear guidelines and appropriate metrics, we can teach them to assure that no patient experiencing an adverse drug event will ever receive the offending medication as a treatment.
Contact: Susan L Abend, MD, FACP
Healthcare Quality Management Group
945 Concord Street
Framingham, MA 01701