Living with psychosis: people, not specimens
Can you imagine what it might be like to suddenly hear voices telling you to do unspeakable, violent things? Variations on situations like that happen to about 1% of Americans annually, as they experience first episode psychosis, a form of schizophrenia. That might not seem like a lot of people, but in real terms, it's about 4 million people who are suddenly faced with the fear of their own mind.
Sadly, according to the National Institute of Mental Health, about 40% of those people will not get any treatment. For those who do receive some care, likely it's insufficient to reassure them and keep them functioning by shoring up the cognitive and motivational deficits inherent in schizophrenia.
Last year, I reported the story of Maggie, a young Maryland woman, who as a teenager, began hearing voices in her head. She said it were as though she were suddenly in a stadium filled with evil people urging her on to harm others. She was able, in part through the steadfastness of her mother, to find the help she needed to stay engaged in her community and even attend nursing school. The help Maggie eventually got, as I reported at the time, came from an entirely new approach to schizophrenia care, delivered as part of the NIMH's RAISE (Recovery After an Initial Schizophrenia Episode) clinical trial, designed to offer comprehensive treatment to young persons experiencing their first episode of psychosis so that they do not end up unstable, and worse, alone. But there is something amazing happening: no sooner have the RAISE trial results started to capture the imagination of communities seeking to ditch "care as usual" which is actually pretty poor, then along has come a new approach. After decades of virtually no change for the better, this progress might seem as though we've entered the Autobahn of Innovation. Perhaps then it's no coincidence that the latest model of ingenuity is brought to you by the DRIVE lab at the University of California, San Francisco, in the form of a digital app that allows persons -- mostly young adults -- experiencing their first brush with psychosis to connect with therapists and, just as importantly, with one another. You can read more about the app and DRIVE's clinical study of its use in first episode psychosis in my report for Clinical Psychiatry News.
The question I ask here is whether these developments in how we treat people with psychosis demonstrate that, not only are we starting to see rapid changes in healthcare delivery, but that we are moving away from the 'middle man' phenomenon. To deliver care on-the-spot by way of a user-driven app, a far less costly intervention than onsite clinical care is, if you ask me, signs that the rising populism we've been seeing in many aspects of culture has found its way to healthcare.
In my interview with the DRIVE lab's principal investigator, Danielle Schlosser, PhD, following a presentation she gave about her group's work to folks gathered at an annual NIMH conference, I had a sense that she's even more disruptive than she realizes (or maybe than she lets on). That's because in our current world of multi-million dollar healthcare facilities, managed care, and fights over profits, Dr. Schlosser is wondering aloud whether we can skip the real estate, the gatekeepers, and the wait for access to care altogether and just let people administer to their own needs -- even in psychosis, which is perhaps the most debilitating form of psychiatric illness there is.
"Maybe I am being too provocative..." Dr. Schlosser told me, responding to would-be critics who would feel safer bringing people into clinics for their medications, administered by trained specialists.
Let's just take that out of the subjunctive, and affirm: It's provocative. But not because Dr. Schlosser is anti-medication, which she decidedly is not. "We know meds help the worst of the symptoms," she told me.
Instead, it's evidence of an evolution in how we see one another as human beings, and how we can learn to trust that humans are actually capable of figuring out how to get through the day, even if we are at times unstable. Because the secured app is designed to generate and collect data about a person's state of mind, reflections about one's experiences with psychosis, conversations with others, and records of how a person dealt with moments of instability, it captures "life with psychosis" in real time, and preserves it so that the people living with the illness can partner with their clinician to review the body of work they have created in response to their illness, rather than be seen as their illness.
The app demonstrates that we can develop coping strategies for our sometimes unpredictable minds, when given the freedom to do so.
This is wholly different from affected persons having to trundle themselves to a clinic, absorb (and possibly reject) the often silly exigeses of who they are as defined by bureaucracy, and be "examined", which implies that they are a specimen, not a person.
It's a break from the paternalistic view of mind, and of humans. We need mental health specialists. But how much better could they function -- and how much more healing could we achieve -- if specialists were empowered to always approach care with curiosity and compassion, not only as the arbiters of what health should be, as defined by a system that while laudably moving towards a more evidence-based foundation, also runs the danger of missing the humanity lodged between the bytes?
A final thought: It was around the turn of this century that managed care came to the fore, with for-profit companies taking over what had formerly been community and charity-run hospitals. As part of this phenomenon, what was considered wasteful or "just" overhead was trimmed from operating budgets. In theory, this would seem sensible.
In practice, it meant largely that consult-liaison and many community-oriented psychiatry services were cut because they did not bring in any revenues. This decimation of services helped grow the need in our communities for effective, and I would even call "stealth" ways of caring for those who have been served the least, and among the least well. Wouldn't it be ironic if the very ones not seen as profitable to care for turn out to be the ones to lead the disruption of care-as-usual for us all?
Hear excerpts of my interview with Dr. Schlosser here.