Eight years ago, when I first began this journey to explore why our mental health system is so dysfunctional in America, I was impacted by the heart-wrenching story shared by Pete Earley, in his book, Crazy: A Father’s Search Through America’s Mental Health Madness. He described the byzantine system he had to navigate to try to care for his over-age 18-year old son who struggled with schizophrenia. Our American system defaults to requiring that our 18-year old sons or daughters be treated like an adult when it comes to pursuing care and treatment for a mental illness. Over the years, through books, blogs and testimonies I’ve heard from NAMI parents, I’ve encountered countless similar stories describing how parents have been excluded from conversation about how to care for their mentally ill adult child and are relegated to watching hopelessly as their loved one disintegrates in front of their own eyes. I have to imagine this is one of the worst nightmares a parent can experience.
So, yesterday, Dr. Alessandra Oretti asked if I would like to make a house call with herself and one of her colleagues. She had been asked to provide an assessment of a situation that had very recently come to the attention of the Dipartimento di Salute Mentale (DSM). Apparently, a family had approached the Barcola Community Mental Health Center the previous week as they were at wit’s end with respect to the symptoms displayed by their 18-year old daughter. Initially, they had sought the assistance of a private psychiatrist, but after two months, he said she would be better served by the DSM. As an example of the radical accessibility of the Trieste system, they showed up at Barcola last Friday without an appointment. (Again, that is what is known as accoglienza.) They and their daughter and were immediately able to talk with someone. Everything was set into motion as a result.
Last year, the DSM created a new service for the city – Supporto e Trattamento Intensivo Domiciliare (STID). I was witnessing the power of this in action: intensive home treatment service. Giampiero Prelazzi, a psychiatric nurse who has worked over 30 years in Trieste, had paid the first visit to the family the previous day.
On Tuesday morning, we drove to the neighborhood of Sistiana, north of Trieste, along the road that hugs the sea. When we arrived, we were greeted by a happy dog and a mother who was delighted and relieved to welcome us. I was introduced as a colleague from Los Angeles.
The young lady emerged from her room – let’s call her Serena – and I was immediately struck by her lassitude. It seemed as if she could fall asleep standing up. She greeted me, and as she has been learning English in school, we exchanged a greeting in English. I noticed her hands were raw and chapped, and I had been told in advance that one of her symptoms was an obsessive desire to keep her hands clean.
Alesassandra began a casual conversation with Serena and her mother. We stayed for about 40 minutes. Because of my inability to understand everything that was said, I found myself relying upon my reading the emotions in the room – similar to what I had resorted to the previous day with Giulia. There were some phrases that I could pick up on. I could tell that Serena sentire le voci (is hearing voices). She was also sleeping a lot and even I could tell that perhaps the medication that had been prescribed was too strong. Her mother brought out the Haldol prescription to show Alessandra.
So many aspects of this encounter seemed radically different than anything that would be experienced in Los Angeles. First, the family had actually driven to the community mental health center last Friday, in desperation, and were seen! How many stories have I heard about caseworkers taking people in crisis to a local mental health clinic and being told that they have make an appointment for a week or two later! You have to strike while the iron is hot!
Second, this new service that has been instituted by the DSM here in Trieste allows for a psychiatric nurse to do site visits as needed. So, Giampiero, will return again tomorrow to see how things are going. The goal is to avoid a crisis, an acute situation that will result in Serena ending up in a traumatic place, like the Ospedale Maggiore, for example.
Third, the family is clearly motivated to help the situation. Alessandra recalibrated the medication to be delivered, to help perhaps reduce the lethargy. The mother took note of that. The family is included in the care plan.
Fourth, the private practice psychiatrist deferred to the state-funded system for the quality of care necessary for Serena. Arguably, the state-funded system is where the talent and the resources for long-term sustainable care and recovery reside.
Finally, I am not a trained psychiatrist, but I have read quite a bit about the importance of early intervention to foster recovery and prevent brain damage. For those who believe an adult (over 18) has the constitutional right to refuse care, it is possible that because of the lack of care, this “civil freedom” is going to dispatch the young person down a road of irreparable brain deterioration. Instead, the Trieste system makes the package of care attractive and accessible. The hope is that Serena, by arresting this onset of symptoms very early, can get onto a path toward recovery. Yesterday I felt like I had the unique opportunity to view this very early intervention phase up close and personal.
After the home visit, we returned to the hospital, where, again, out of six beds, only one was occupied. La mia amica, Giulia. These community-based services are intended to avoid an admission to the psychiatric unit in the hospital. It appears to be working.