A father’s mental health decline as reported by his son.
EDITOR’S NOTE: In recognition of National Mental Health Awareness Week, ICD10monitor asked Marvin Mitchell, Director of Case Management and Social Work at San Gorgonio Memorial Hospital in Southern California, to share a recounting of a recent experience with his father, who was suffering from mental illness, as recently described on the RAC Relief listserv.
A patient presents to your ED. Their mental status is altered, and changed from baseline. A workup reveals no source of infection, no acute changes seen on imaging, no identifiable cause explaining the change in behavior. What is clear is that your patient’s family is at their wits’ end. What was a daily struggle has reached a tipping point to impossible, exceeding the available resources and caregiver abilities.
The physician is faced with a conundrum. Is this an acute psychiatric episode, or a custodial placement challenge? As much of generalists as ED providers and hospitalists can be, the ability to address mental health issues is as familiar as being called upon to treat space aliens. There’s nothing for it but to find a safe environment for this unfortunate individual to live out their days. The social worker will have a tough time finding placement with those behaviors, but it is what it is. Right?
I see this played out frequently in my case management practice. One ED provider, upon seeing an elderly person with altered mental status, will reflexively place an order for social work to investigate placement. Another might place the patient on a 5150 involuntary hold, or ask me or a social worker to evaluate for a “gravely disabled” 5150 Hold. There’s not a lot of middle ground. What’s more, an ED is not the optimal venue for making life planning decisions.
There is a score of different kinds of dementia with very different roots, and possibly as many treatments. Yet we lump them together. Aside from professional experience, my personal journey with my father taught me a few lessons.
What began with a word-finding problem became an inability to put together coherent sentences. At first he seemed oblivious. He would talk with his usual animation and expressiveness, making no sense at all. Then came the realization that people were avoiding him. He would try to communicate in a sort of code that only those closest to him could sometimes decipher. He suffered no memory loss that we could tell. Memory loss would have been more merciful. He became less rational; the best way I can describe it is the response to stress of a very young child.
And he felt useless.
This once gentle man became physically threatening. A big man, he could do some real damage. It came to a head at a Phoenix street corner on a miserably hot, 115-degree July day. Dad had stormed out of the house, furious at his uselessness, physically threatened my tiny, frail mother, and slung a cloth bag over his shoulder containing a hammer and a can of pork and beans, looking for construction work. Five large firemen were needed to subdue him so he could be taken to the ED for evaluation of this sudden change in behavior.
His primary physician arranged admission to a specialized psychiatric unit, where a geropsychiatrist would attempt to stabilize his behavior through medication. While signing paperwork for the admission, I was approached by a psychologist who told me that the first step was determining medical necessity. The process was explained to me, and it didn’t sound encouraging. A sensation of desperation swept over me. There was no margin for error, no immediate easy options. I needed time. On the way to the hospital I had spoken with my wife and my mom. Short of a miracle, dad would never return home. This angry outburst was not the first. Mom was terrified. What I saw on that street corner was raw emotion. Dad was prepared to do me physical harm if I tried to stop him.
The geropsych effort was only partially successful. It cost $5,000 for assisted living, twice the usual rate, because of breakthrough bursts of aggressiveness. I came to understand that his behavior really was anger; anger at his inability to be Cliff Mitchell, husband, dad, pastor, building contractor, and friend.
During his second stay on the geropsychiatric unit, as we sat on the edge of his bed, we wept together. All I could say was that life was so god-damned unfair. He looked at me and said, “it’s time to go on down the road.” What did he mean? He wanted me to stay. He managed to communicate that dinner would be soon. Instead, there he was, standing there looking at me through a porthole-shaped window of a locked door, his expression pleading with me as I backed away, feeling just as lost. To this day I ask myself if I should have stayed, hung out more; maybe it would have eased his burden. Or worsened it. It was impossible to compartmentalize the situation enough to pretend things were or could be OK.
A week later, “he went on down the road.” He just gave up, passing away in what appeared to be sepsis, but was in reality a drug reaction. He was given Seroquel, later discovered to cause sepsis-like symptoms in people with certain dementias. I cannot blame the physician. He was working with such limitations in basic research. Even years later, what do we really have? In retrospect, following the history of his disease, it is clear that his mental illness (a better descriptor than dementia) was the result of cumulative insults to his brain, an implanted device meant to treat essential tremor disorder that was improperly self-adjusted. If he had been robbed of his memory, perhaps he may have lasted many more years. He literally wouldn’t have cared about his loss. What I wonder even now is if the anger should have been addressed, and not just the behavior. How could that have been missed?
Now, in the business we are in, questions of medical necessity are discussed dispassionately. A demented patient with bad behavior comes to the ED and quick decisions are made: custodial placement, maybe the family can afford private duty care, is this delirium or psychosis? No, there’s no acute illness, there’s nothing to do here. Managed care plans seldom pay for geropsychiatric admission, or any inpatient mental health treatment. Most physicians are not trained in diagnosing mental illness; there are also too many assumptions and stigmas. In supposedly the most advanced nation for medical care, when it comes to some things, we have few to no good answers.
When a man like Cliff Mitchell comes to the your ED, instead of seeing a demented person who needs to be dealt with, please, take a moment – see what has been otherwise a life well-lived, 63 years of marriage to a woman he never stopped being crazy in love with, a doting grandpa, deeply flawed, but a good man who paid his bills, provided for his children, and meant the world to so many people.
Programming Note: Listen to live reports on mental health during today’s edition of Talk Ten Tuesdays, 10 Eastern.