Tuesday, December 18, 2007

It Shouldn't Be So Hard: A Parable from the World of Families Living With Mental Illness

Got feedback today, from a colleague who thought that, while my take on the evolving mental health system was interesting, it did not reflect the pain and anguish of those who actually engage the system. This person speculated that, perhaps, that was asking too much- that one really needed to have a child in the system to understand and be able to express that degree of pain. Maybe I am doing all that I can.
My colleague may be right. I have witnessed many families dealing with childhood mental illness over the past 17 years; I have listened to their stories, and tried to fit them into the scientific paradigm in which I have been trained. My heart has gone out to each and every one of them, and I have done all that I could think of doing to try to help them care for their child. But, to show their pain- to give voice to their frustration and grief- that may require a level of empathy and literary talent that this science-focused physician does not possess. Still, there is much to learn from stories. Let me tell one, in a HIPPA-approved and names-have-been-changed manner that may illustrate the human misery associated with these disparate systems (or non-systems) of care may engender. Give me feedback, folks- I have now enabled it to be doable anonymously.
Ruel K. is a preschool boy, known to our practice since birth.  He lives with his mother and grandmother;  his father is incarcerated for something or another.  We don't know much about his psychiatric history.  His mom was young when he was born, 16 or 17, and she has worked consistently since she dropped out of high school to have Ruel.  Mother and grandmother split shifts to provide child care;  both have described him as "a handful", "hard to manage" and "difficult" since he started to walk.  They had seen me and some of my partners for his check-ups over the years, because they had to schedule things around their work schedules.
This Monday morning, however, things were clearly worse.  Both mother and grandmother were in the office.  Ruel was poking into things as his mother tried to explain what was going on.  It was complicated;  he wouldn't sleep,  he ate when he felt like it, he sometimes ran out of the house when they weren't looking, he "talked back", he didn't mind-  he was just impossible.  I tried to get a more orderly history- what happened when- and they were just not able to sort through all of the events of the past 4 years that added up to "He is out of control".  Finally, it came out:  he had taken to hurting pets that live in the house.  His mother seemed ashamed, the grandmother hurt and confused.  Both were scared; what can you do with something like that?  How do you even admit it to your doctor?  I was a bit taken aback.  Injuring animals is one of the red flags of pediatric practice;  children may do it inadvertently, but deliberately injuring animals is unusual in an almost 5 year old.  I could only imagine what was going through their heads.  Meanwhile, I took a look at Ruel.  He looked fine, and cheerful, and said nothing when I asked him about the pets.  Even so, I knew we needed to do something.
Fortunately, they had insurance (MassHealth), so there were a few things that could be done.
First, I talked safety.  Are the knives locked?  Are there other weapons?  How do you secure the doors?  They also had considered those options;  they didn't feel that he needed to be elsewhere while we worked this out.  Then I called MCPAP.  They agreed to see him and the family for an emergent evaluation, without sending him through the ER.  They thought that the family would benefit from the Family Stabilization Program, for a more complete assessment and the initiation of both behavioral and possible psychopharmaceutical therapy.  So we made the referral and thought that was that.  (I actually went on vacation, thinking that I had successful helped these folks navigate the system).  
When I returned, I was at a meeting with our Mental Health Network, and thanked the local FST provider for helping us out with a family in need.  The provider said "Oh, right, that's the family we have been unable to get in touch with".  Surprised, I asked the family came back for a follow-up visit.  They could not understand why nothing had happened.  After a few days and a bunch of phone calls, I found massive communication breakdown in the midst of plenty of communication methods.  People from our office, the MCPAP office and the FST office were getting either grandmother or mother on either a cell phone or a land line; the family didn't understand how the MCPAP and FST programs differed, and why they needed those programs when they had a perfectly good pediatrician (me) who was away on vacation; FST couldn't do anything without mothers express permission and she wanted to talk to me before agreeing to anything.  I thought that I had explained how mental health issues in childhood needed both behavioral therapy and medications sometime, and that we didn't really understand the medications in young children, so we were cautious in prescribing them.  The family thought we were blaming everything on them, and may well have thought that FST was somehow connected to DSS (Child Protective Services in Massachusetts), and couldn't understand why I hadn't prescribed anything yet.  Mother had spoken with half of the people involved; grandmother had spoken to the other half, and the net result was one month of inaction.  
As the title said,  it shouldn't be so hard.
After a few hours of listening and sorting, my care coordinator and I managed to get it straightened out.  FST went out the house and started working on the behavioral plan with both the mother and grandmother.  My office and the FST program were able to push for involvement in the local HeadStart program (he had been on the waiting list).  A psychiatrist is watching with us to look at the response to behavioral therapy and ready to offer the family advice on the the role of medication.  And neither mother nor grandmother have lost their jobs, although I suspect both have added grey hair after going through this process.  A happy beginning:  I will be watching this child carefully going forward.  
What are the lessons from this parable?
1)  Communication is everything.  I think that I gave some idea of how confusing the process got in this relatively simple interchange.  The more people involved in the interchange, the more likely miscommunication becomes.  There was no-one in this story trying to block the initiation of treatment;  the system did that for us.
2)  Persistence pays off. The flip side of that is "It is real easy in such a system to give up".  Families need to be supported through the process, with more than a phone number on a slip of paper.
3)  Families get put off by systems.  To the family, these systems we have build (MCPAP, FST, etc) all look the same, sort of, and they need a road map or a native guide to find their way through it.  In this case, I had the time, energy and a care coordinator to do that.  How do we build a system where everyone has a sherpa to climb the Himalaya of mental health care?

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