Two years ago I wrote a blog entitled “So You Say You Want a Revolution?” in which I laid out in general terms what I saw at that time as the key ingredients in making revolutionary changes in public mental health systems. They were 5 C’s: Commitment, Courage, Creativity, Capability, and Care.
I’ve had two more years to think about these things and have a few more thoughts on this topic. If working from the 5 Cs seemed daunting before, my ideas for system revolution are now more specific and even more challenging.
A formative experience for me was beginning to work several years ago with a large state agency that served many young people with mental health problems. A colleague from my days as the state mental health and addictions commissioner began to talk with me about my new perspectives on the treatment of people with mental health challenges. He told me that he was interested in looking at how psychiatric medications were being used in his agency. His words were encouraging: “Whatever we’re doing, I want to make sure is in the best interests of the youth in our care.” I jumped at the chance. I toured facilities, and discussed the issues and the risks in overusing medications with another former colleague who was in charge of treatment services.
The bottom line ended up being a financial equation: “If it costs a dollar to keep a young person out of trouble using medications and it costs a lot more to keep the young person under control with staffing, what do you think we’re going to do?”
That stopped the plan that I’d been cooking up which was to map the use of psychiatric medications for that agency so we could see which psychiatrists were prescribing which drugs to which youth with which diagnoses. We could then match their current practice to what unbiased research showed was most effective in the short-term and long-term outcomes.
The resistance to “doing the right thing” isn’t purely financial though. In fact, a strong case can be made for savings over the long term by a more conservative approach to using drugs. But perhaps the biggest hurdle is getting professionals and administrators to learn about and then apply the scientific findings that medications do more harm than good in the long run.
I think that what we’re talking about is the same kind of denial we see with climate change. The unbiased research on the effects of psychiatric medications is pretty clear now but our “cultures of care” are very slow to recognize this. And just as in the climate change world, this denial is well supported by commercial interests which reinforce the inertia of longstanding practices. In the mental health field I suspect that most practitioners recognize the risk of climate change but somehow not the risk associated with psychiatric drugs.
Understanding the effects of climate change suggests another parallel—we could map medication prescribing patterns too. The map would show where medications are being used, and the coordinates would be diagnosis, age, and other variables rather than geographic. But as I learned in trying to work with that state agency, there is going to be great resistance to this mapping in spite of the fact that the digital age makes the data more accessible than ever—if only the will and commitment to doing the right thing were there.
In this blog, I am going to “map out the mapping process” in the hope that it can be useful in advocacy efforts. And I will also point toward ways in which the system can be remapped.
For starters, every community mental health program should develop a register of prescribing patterns. This register would collect data on 1) which prescribers are prescribing 2) which drugs to 3) which clients with 4) which diagnoses. The data should also include 5) age, 6) income and 7) ethnicity.
Community mental health programs range from outpatient care all the way to intensive services such as crisis intervention, residential facilities, acute inpatient services and extended care programs like state hospitals and alternatives to long-term hospitalization.
A sometimes under-recognized reality is that services outside the mental health system proper prescribe a significant proportion of psychiatric medications. These agencies include all kinds of alcohol/drug programs (though they tend to be more suspicious of chemical fixes), child welfare services (i.e. foster care), juvenile justice programs, and corrections departments. In addition, developmental disability services, senior services, and educational systems are almost always involved in some way with medicating the most challenging children, youth, adults and seniors.
Finally, with the emergence of more “integrated health care” (where mental health, alcohol/drug and dental care are folded into physical health care management), this mapping must include the primary care and specialty medical services controlled by coordinated care or quasi insurance organizations. It is also the case that physical health care practitioners have long prescribed the majority of medications like antidepressants, opioids and anti-anxiety agents. None of these drugs can be overlooked in a comprehensive mapping project.
Establishing this kind of comprehensive drug review map will make possible a complete assessment of the expenditures on psychiatric drugs. I predict that these expenditures are going to surprise and concern anyone responsible for managing these costs. Just one example: I was shocked several years ago when I was in charge of a Medicaid mental health organization and learned that in just one year, a single psychiatrist had prescribed nearly $500,000 of a neuroleptic off label to CHILDREN! This information hadn’t presented itself to me because it was outside my budget—the pharmaceutical corporations have lobbied successfully in most states to keep the costs of psychiatric medication outside the regular mental health budgets. It’s a way of disguising the magnitude of these costs clothed in the language of assuring access to such valuable and life-saving drugs. They were really just paving the way for maximizing their profits.
Once the data is mapped it should be reported to state legislatures or other governing bodies and made available to all advocates who ask for it. As the actual costs and ineffectiveness of these drugs become apparent, the next set of steps I will recommend will be equally if not more challenging—and that is: what would the map of alternatives of handling mental health problems look like?
One of these would be to require the completion of online continuing education courses for all prescribers and managers on the true effects (short-term and longer-term) of major classes of drugs. The Mad in America Continuing Education project is a good start in this direction and needs to be amplified even more.
Another piece of a new map would be establishing radically improved informed consent standards so that patients and families get an accurate picture of what they can expect from medications—not just the relatively perfunctory warnings about tardive dyskinesia and dry mouth.
Every community must then create a drug withdrawal program. Any person who wants to decrease dosage or attempt to live life drug-free can do it safely, under competent medical services along with peer support from those who have successfully accomplished it and/or are going through it themselves.
Finally, to oversee this process, each state or community should create a commission to review all of the mapping data and whatever implementation issues emerge. The commission would recommend further steps to establish and sustain a new paradigm of care. These commissions would include peer advocates—at least 50%—as well as representatives from all the state and local agencies listed above that prescribe psychiatric medications. All members must demonstrate that they have the necessary unbiased knowledge about medications and alternatives. At a local level, “collaborative learning agreements” should be implemented that would facilitate the work of putting into practice the evidence-based interventions that emerge from all of the steps outlined above.
This admittedly ambitious set of steps is what is involved in moving away from a “climate change denial” paradigm of care. Daunting? Certainly—so that C (for “Certainly”) gets added to my earlier 5 Cs of Commitment, Courage, Creativity, Capability, and Care.
Is there a state or local community brave enough to start the process?