I went solo to see the Soloist last night. It was a pretty good movie, but it had a lot going for it from the get-go, as far as my film-preferences go: mental illness, neglected urban decay, wordy nerds, and a love of music that borders on idolatry. What I didn’t expect for it to include was something else that gets me going: medical ethics. First, a little background. Then, I will get back to the movie. Don’t worry, no spoilers.
One of the crowning tenets of modern medical ethics is that individuals should not be forced to undergo treatments, and they should be adequately informed about the risks of various therapies before they agree to sign-on. I think we can all agree that, in general, informed consent is an ethical concept.
In response to research atrocities of the last century and the paternalistic notion that a doctor “knows best,” the right of an individual to direct her health care decision-making has been enshrined not just in medical ethics, but also in the common law of tort. Individuals who are treated without giving their voluntary informed consent can sue under negligence doctrines, and in some states under fraud.
Despite being a cornerstone principle in bioethics, the limits of obtaining informed consent have been recognized. Children are not able to give informed consent, though there is a growing movement to allow adolescents to have their opinions taken into account alongside their parents’ assent. Patients who lack capacity (meaning they are not capable of making specific medical treatment decisions) cannot provide informed consent. And in some cases, because you are of a class of people so vulnerable and so routinely abused by society, we assume that your ability to consent is compromised. And in some cases, it probably is. This thinking, however motivated it is by protecting the best interests of the subject and deterring those who seek to exploit the poor, perpetuates a system where some people’s wishes are deemed per se illegitimate (though we often couch the discussion of informed consent in thoughts of duress or coercion). While I understand the roots of this thinking, and its proper default of erring on the side of protecting the vulnerable, I do suggest that on occasion we challenge its application. To assume that under no circumstances could a poor mother in India voluntarily consent to be paid $100 in return for participating in a low-risk clinical trial is condescending and denying the very agency we want to respect. It’s a perverted return to a type of paternalism that assumes informed consent means “you would choose what I would choose.”
But the pendulum swings both ways. On the opposite side do we have perhaps too much deference for an individual’s ability to direct her care? In cases where patients are mentally ill, stricken with schizophrenia and not taking any medication, would it be ethical to force them to take anti-psychotic drugs, if just for a little while, so they could get a window on to what their world might be if they chose to continue with meds? Of course traditional theorists of bioethics answer a resounding, “no.” But this is the question Steve Lopez’s character (played by the gifted Robert Downey, Jr) asks for a moment in the Soloist. He met Nathaniel Anthony Ayers, a homeless man who once attended Julliard, on the streets of LA. Lopez is a journalist at the LA Times, and at first just wanted to write a column about Ayers, describing how one could go from cellist prodigy to living on Skid Row.
Along the way Lopez decides that Ayers may have schizophrenia, based upon his confusing speech patterns and his altered(?) sense of reality. But of course Lopez cannot diagnose Ayers and neither can we. Instead, Lopez asks the volunteers at an LA community clinic to provide Ayers with mental health care. Lopez asks why the clinic cannot force Lopez to take meds. The clinic coordinator speaks from the cynicism that only a fallen optimist could possess. He instructs Lopez that they could only force Ayers to take his medication if he were a danger to himself or others. To this, Lopez poses a (paraphrased) hypothetical: “what if I called the police and said that Nathaniel had threatened me? He would then get 14 days of mandatory treatment where he could see how his life could be, free from mental illness…wouldn’t you want to be a part of that?” As Lopez contemplates Ayers’ life on the rough streets of Skid Row, he asks, “Is arm-twisting him to take medication more humane than leaving him here?” Incidentally, under California law, Lopez could be held civilly liable if he lied to the police about Ayers’ risk to himself or others…
Of course, Lopez assumes that anti-psychotics would likely help Ayers, and they very well may not. It’s also possible that Ayers has already tried to stick with various treatments, and the negative side effects were just too much for him. Or, Ayers has a history of coerced treatments, where he has been tied down, given electro-convulsive therapy or received so many meds at such high doses that he was left snowed and unable to appreciate Beethoven. This is of course not the kind of treatment supported by the APA, and it’s obviously possible to have well regulated, moderate doses of anti-psychoatics prescribed that don’t leave people snowed. We do not know what treatment Ayers has experienced before Lopez enters his life with his journalistic lens. But it is interesting that if someone, as a result of mental disorder, were considered an imminent threat to himself or society, he could be involuntarily committed for some time under various state laws. For example, in California, a 5150 hold would allow such a person to be restrained in a health care facility, without his consent, for 72 hours while he is evaluated and treated. Why is our focus on the immediate threat, and not on someone who is slowly and predictably killing himself? Perhaps this is because the statutes were often written to prevent battery, homicide, or suicide. In an ideal world the state would help people be the “best” version of themselves, and keep track of our deleterious behaviors over time – but this is unrealistic. The state cannot protect you from many things that fall short of the criminal code, even those self-destructive things that would together amount to the same outcome, albeit more slowly. But is it just about what’s practical, or is there something else motivating the distinction over forced treatment when the danger is imminent?
I guess I’m wondering why it is that we’re so inconsistent with our principle of informed consent. In some cases we may be overly deferential and in others – overly paternalistic and dismissive. Our informed consent behavior, as codified in state statutes and court cases, does not track cognitive capacity or SES/vulnerability very neatly. Perhaps the difference is that with the mentally ill, we are forcing them to take something that might not work, rather than letting the juggernaut of the status quo do its work. But don’t we forcefully treat thirteen year olds, who might actually be better able than those with schizophrenia to understand and articulate their wishes?
Maximizing informed consent is something for which to strive. But can we ever do as good of a job as we hope/think we are doing? What if, on the margins, informed consent is just a channeling device, making us feel better about our substitute judgment of what is in the individual’s best interests? And when we cannot presume to know what is in the best interests of someone’s brain that is so foreign to us – either because it’s so poor, so third-world, so mentally ill or disordered – we stick with the false safety of the status quo? — Teneille