The Vicious Cycle

Those who cannot remember the past are condemned to repeat it.

George Santayana

When a plane goes down, do we asked what killed the passengers?  When a person dies in a car crash, do we ask what killed them?  We assume it is the blunt force trauma.  We search no further.  However, the makers of that plane or the maker of that car ask a different question.  They ask questions such as “what caused that plane to go down?”  “What caused that seat belt not to engage?” “why did the airbags not inflate?”  Perhaps the most important question they ask is “how do we prevent this from happening again?” 

We have all been hearing about the Fatal Four.  What we hear is that these are the 4 main causes of death for people with an Intellectual Disability.  What we don’t hear is ‘what caused the Fatal Four?’.  Much like an airplane that has crashed, there are no survivors.  The genius of the airplane is that it has a black box that is capable of deciphering what went wrong.  Maybe it was a mechanical malfunction or maybe it was human error.  In either case, the problem can be addressed proactively for other planes, thus saving the lives of other people.  Maybe we need to begin thinking about a black box for the people we support.  We know what the Fatal Four are, but where is the black box that tells us how we can proactively save the lives of people?

One place to start may be in addressing the point of origin for the Fatal Four.  Let me be clear, I know that a person can not simply rid themselves of a seizure disorder.  So where else can we start?  Perhaps we need to take a manufacturer’s standpoint, “how do we prevent this from happening?”

Let this statistic sink in.  Seventy percent of people with an Intellectual Disability are prescribed psychotropic medications without having a diagnoses of severe mental illness.  That means that people are being prescribed medications “off label.”  To be clear, ‘off label’ is the prescribing of a medication when there is NO approval from the medications regulatory agency to treat that particular condition.  Think of it as taking an aspirin for an upset stomach.  It doesn’t make much sense.  However, people with intellectual disabilities are prescribed psychotropic medications for behavioral purposes.  There is no data to correlate that taking pychotropic medications will lessen aggressive behavior.   To clarify, psychotropic medications were designed to combat severe mental illness, not to fix behavior.

 “What in the world do psychotropic medications and the Fatal Four have in common? Thinking back to that black box, we are trying to pinpoit causes. Just like a plane or car crash compels manufacturers to consider point of origin for the problem in the wreck, we need to consider point of origin for the Fatal Four.”  Perhaps one point of origin for the Fatal Four is in the prescribing of pyschotropic medications for off label use such as “aggressive behavior.” 

Psychotropic medications have many side effects.  In looking at the Fatal Four and these side effects, there is a strong correlation that needs explored.

Pyschotropic medications

• Lower seizure threshhold in people with epilepsy.
• Reduce swallowing ability which opens the gates for respiratory infections, aspiration, and choking.
• Can cause constipation.

Finally, we should consider dehydration.   The most common causes of dehydration are laxatives (used for constipation), diuretics, and anti-Parkinson’s medications .  Anti-Parkinson medications are also used for movement disorders brought on by the use of psychotropic medications.  These include Cogentin (benztropine mesylate),  Sinemet (carbidopa-levidopa), and Requip (ropinirole).  

What we can see in the list above is the beginning of a vicious cycle.  How do we stop it?  In people with severe mental illness, the risk of psychotropic medication use is outweighed by the benefit.  To start, we need to ask ourselves is the risk of ‘off label’ psychotropic medication use outweighed by the benefit.

Best practice is a term that is used often in the human service field.  In fact, it is a backbone to Everyday Lives.  Caution must be observed when convenience is mistaken for best practice. 

In 1970, best practice for aggressive behaviors were straight jackets and large cages.  Obviously these are no longer considered best practice.  When fatality is acute, it is easy to correct.  When the fatality is prolonged and recurring, such as the consequence of daily psychotropic medication use, it seems much harder to correct.

Food for thought: At the height or their usage, straight jackets were prescribed by doctors to prevent injury to ones self, staff, or peers.  Today, people are prescribed pscyhotopic medications for prevention of aggressive behaviors that could cause injury to themselves or others. We need to tread carefully lest we repeat history with only a different tool.