NYAPRS Note: Compelling words from Dr. Elyn Saks, a nationally noted law professor who identifies as living with schizophrenia and a fellow trustee of the Bazelon Center for Mental Health Law: “instead of designing new ways to force medication on patients, we need to put our efforts into finding new ways to help people want treatment so we don’t have to use force.”
The Consent Dilemma
It's hard to keep mental-health patients on their medications. Would it help to let them say "no"?
By ELYN SAKS Politico The Agenda August 9, 2017
Patient consent is an important principle in medicine, but when it comes to mental illness, things get complicated. Other diseases don’t affect a patient’s cognition the way a mental illness can. When the organ with the disease is a patient’s brain, how can it be trusted to make decisions?
That’s one reason that, historically, psychiatric patients were given very little authority to make decisions about their own care. Mental illness and incompetence were considered the same thing. People could be hospitalized and treated against their will if they were considered mentally ill and “in need of treatment.” The presumption was that people with mental illness—essentially by definition—lacked the ability to appreciate their own need for treatment.
In the 1970s, the situation began to change. First, the U.S. Supreme Court ruled that a patient could be hospitalized against his will only if he were dangerous to himself or others, or “gravely disabled,” a decision that led to the de-institutionalization of most mental health care. Second, anti-psychotic medications came into wide use, effectively handing patients the power—on a daily basis—to decide whether to consent to treatment or not, simply by deciding whether or not to take their pills.
Today, even when hospitalized, psychiatric patients in about half of U.S. states have the right to refuse medication if they are competent. As a result, assessing competence and obtaining a patient’s consent to be medicated has become a critical hurdle in the care of people with mental illness.
The truth is that many patients with psychiatric disorders don’t want to be on psychotropic medications, and many patients, in and out of hospitals, refuse. Sometimes it’s because they don’t like the side effects, such as gaining weight, or feeling sluggish. Sometimes it’s because once they feel better they don’t think they need the meds anymore. And sometimes patients believe that successfully getting off of medication would prove they are not ill, and soothe the psychological injury of having an illness and needing treatment.
This can be a very frustrating situation for family or friends of those with mental illness. With the best of intentions, they may want to find a way to mandate treatment, so their loved one could get better. And residents of towns and cities where some of the untreated people with mental illness wind up living on the streets may think that it would also be in the best interests of those patients to somehow mandate treatment.
But as I can attest from personal experience, however paradoxical it may seem, the best way to increase the number of mental patients who consent to treatment is to make it easier for them to refuse.
This is because if patients have a right to refuse, they have a chit with which to bargain with their doctor. And, indeed, there is evidence that when patients have input into the medication decision, they are likelier to adhere to their medication regimen. This is in part because they can provide valuable information about what works for them and what is most tolerable in terms of side effects. And it is also because, if they are involved in the decision, they are likelier to be committed to it—it is, after all, what they have chosen.
My own story helps explain why. I fell ill with schizophrenia when I was in my early 20s and was given a “very poor” and “grave” prognosis. I was expected to be unable to live independently, let alone to work. For about 10 years I made multiple efforts to get off medication, undertaking each effort with great gusto and failing miserably every time. My main motive was to prove I wasn’t really mentally ill—that it was all some terrible mistake. My analyst eventually threatened to stop seeing me unless I stayed on my meds.
I decided to try one last time, and when that failed, I reconciled to being on the meds. And then something magical happened: My life got immeasurably better. I’m now a chaired professor at the University of Southern California Gould School of Law, happily married and with many friends.
When I look back on my journey, while I am sorry I didn’t get smarter sooner, I know that forcing me to take the pills would have backfired and kept me locked in a power struggle over whether or not I was ill, instead of letting me come to terms with my illness in my own time and my own way.
I would hope that many patients will eventually end up in the same place I did. But even if they don’t, giving them the choice is a necessary precondition to helping them address their mental illness. And if and when they do come around, they will be that much more committed to working with their doctors and staying healthy.
As a result, I believe it’s important to expand the definition of competence so more patients with mental illness are deemed competent and retain control over their treatment, and I’m working with colleagues at the University of California-San Diego School of Medicine on ways to do that.
Currently, psychiatrists often use something called the MacArthur capacity instruments to decide whether a psychiatric patient is competent to refuse care. Using MacArthur, doctors evaluate four items: a patient’s understanding of her condition, her appreciation of its seriousness, her ability to use reason and her capacity for choice.
The “appreciation” piece is perhaps the most critical, evaluating a patient’s ability to form correct beliefs about treatment and its risks and benefits. Far from most psychotic people being incompetent, on the MacArthur Appreciation scale, only about 23 percent of people hospitalized with schizophrenia scored “impaired.”
But that’s still too high.
Along with my collaborators at UCSD, I have designed a new appreciation test called the California Scale of Appreciation (the CSA). While MacArthur requires a patient to express roughly correct beliefs to pass the appreciation test, our standard would rule out only patently false beliefs. For example, under our CSA standard, a patient could refuse meds because of reasonably foreseeable side effects or risks, even if they are fairly uncommon. He could not refuse, however, if he believes he was helped by the meds in the past but a voice told him not to take them again or he would trigger a nuclear holocaust. Under this standard, our experts have rated just 8-13 percent of outpatients with schizophrenia incompetent—roughly half as many as MacArthur.
Another approach being tested by researchers at Stanford University is “enhanced consent”—protocols that review and summarize information in a user-friendly way. In these protocols, a video presentation may take the patient through the important elements of the treatment he or she is facing. These have been found to raise the mean performance of patients consenting to the same level as that of healthy comparison subjects. This approach shows that with proper supports, all but a small minority of mental patients can make competent decisions about their treatment, making it more likely that more of them will get better with time.
The bottom line is that instead of designing new ways to force medication on patients, we need to put our efforts into finding new ways to help people want treatment so we don’t have to use force. That’s the best way to improve compliance and push the era of forced treatment deeper into the past.
Elyn R. Saks is a law professor at the University of Southern California Gould School of Law, a recipient of the MacArthur Foundation “genius” award and author of the memoir, “The Center Cannot Hold: My Journey Through Madness.”