Involuntary Holds: The Messy Truth

Photo by Michael Förtsch on Unsplash

Yesterday at a presentation I was doing for members of a decidedly liberal church about NAMI Sacramento programs—that’s the National Alliance on Mental Illness—and our local crisis continuum, I was peppered with questions I didn’t expect. I hadn’t come to talk about involuntary holds, known in California as 5150’s, but that was one of the things people wanted to talk about. Our local Sheriff recently stopped responding to behavioral health calls for service. Sheriff’s officers are no longer issuing 5150’s at all and are not taking people on an involuntary basis to the hospital. The Sheriff’s office also refuses to transport individuals who have been 5150’d by someone else, like our civilian crisis response team, the Community Wellness Response Team, or CWRT. The CWRT can only transport someone who agrees to go. Not everyone agrees to go.

Some of the people in the audience wanted to know how you could make someone take medication. I explained the law in California. The Lanterman Petris Short Act, or LPS as it’s better known, dictates when someone can be confined against their will and when they can be forced to accept treatment like injectable medications and ECT or electro-convulsive therapy. The bar for forcing someone to accept treatment is very high and, when someone is inpatient, it requires a court order. The person’s life must be endangered by their refusal of treatment. This typically means they are not eating, not drinking, or are so withdrawn or unable to function due to their illness that they are literally dying from their illness. It does not generally mean that they are in danger of becoming homeless, of being raped or attacked, or of being unable to work or manage the arduous task of applying for and then managing public benefits like Supplemental Security Income or SSI. All those things seem to be reasons some folks think you should be able to force someone with serious mental illness into treatment. They are not.

In California, outside of a psychiatric hospital that has obtained a court order to treat someone involuntarily, the only time someone can be forced to accept treatment is when they are LPS conserved. This is the only type of conservatorship in California that allows another person to make psychiatric care decisions for the person who has been conserved. An LPS conservatorship allows a conservator to lock the person up for a maximum of one year (renewable annually) in order to receive psychiatric treatment. A couple of the church members were dismayed by this bar on the power of hospitals and doctors to force someone into treatment. But these people who are very ill are in denial, and they need treatment, they said.

I took a breath and launched into my spiel about anosognosia (an-uh-sug-no-see-uh). This is the medical term for the lack of insight or awareness that up to half of people with serious mental illness, like schizophrenia and bipolar disorder, experience. They are literally unable to perceive their behaviors as irrational, bizarre, or dangerous. The degree of anosognosia varies from person to person and varies over time for any given person, depending on the degree of their illness or other factors we don’t really understand. Someone can have insight when they’re not ill, only to lose that insight when they experience an uptick in symptoms. Many people with anosognosia do not regain insight even when other symptoms are successfully treated.

This helps explain why a lot of folks stop taking their medications once they are discharged from the hospital. If I told you that you had a serious health condition that required daily medication or a monthly shot, but you had no symptoms and no one could point to a blood test or scan to prove you had something wrong with you, would you take that medication? If you were convinced there was nothing wrong with you, especially if you didn’t trust the doctors who were telling you this because they had locked you up against your will, would you agree?

Photo by Christina Victoria Craft on Unsplash

Lots of people who aren’t mentally ill don’t take the medication their doctor has prescribed for them or don’t take it as ordered. Maybe they don’t take their high blood pressure medication because they feel fine, or they just forget. And it’s easy to forget when there isn’t an immediate consequence for that failure that can be directly connected to missing a dose. This is often the case with serious mental illness. It can take time, several days to months or even years, before the symptoms become a problem again. And if the person has really bad anosognosia they may never come to see those symptoms as a problem. They are unable to perceive reality accurately, and you cannot persuade or convince them they are wrong. This is delusional thinking, and, by definition, you cannot sway someone who is delusional. You can try to structure a conversation with them that emphasizes how a problem (involuntary hospitalization) might go away if they accepted a particular solution (medication) without insisting that they acknowledge they are sick or even that their behavior is a problem. This approach is based on the work of Dr. Xavier Amador. You can read more in his book “I am not sick I don’t need help” available in libraries and through your local bookstore. But this approach requires empathy, skill, and time, and the success rate is a lot less than 100%.

This detour into medication compliance problems may help you appreciate one reason why involuntary hospitalization is a messy subject. You can hospitalize someone and force them to accept treatment, but eventually they will be released, and if they have anosognosia or they have side effects that are more troublesome than their mental illness, they will stop taking their meds. And the chances are good that sooner or later they will end up very ill again and back for another round of catch and release. If they live in the unincorporated part of our county they will be left alone unless they hurt someone or commit a crime. Then they will go to jail, not the hospital. Some people refer to hospitalization as a form of incarceration. (The distinctions are sometimes hard to identify.)

Photo by Umanoide on Unsplash

I don’t know anyone who likes being forced to spend time in a psychiatric hospital. There are lots of reasons for this. There’s the obvious loss of autonomy. You don’t get to decide much of anything when you’re a patient—from what time you go to bed to what food you eat and when. I know, I’ve seen the leafy view through the wire-reinforced glass of a local hospital’s third floor windows many times, though I have never experienced court-ordered treatment or restraints. I have experienced being sedated, but I was so out of it at the time, I didn’t understand what was happening when they told me to take the little white pills. And I have been in isolation when manic. This loss of autonomy can be hard to accept, but if you are the subject of court-ordered treatment, you also don’t have control over what’s done to your body. This problem can arise even if you’re not on court-ordered treatment because if you become out-of-control (as defined by the staff) you are subject to involuntary sedation, isolation, and, worst case scenario, restraints too. I guarantee that if you have had this happen to you, you do not want to go back to that hospital ever again. Imagine you also have anosognosia and see absolutely no reason for someone to torture you this way. Even if you weren’t paranoid and suspicious before, you sure are after being sedated and restrained. Up to 67% of people who have been involuntarily hospitalized have been reported to have developed Post Traumatic Stress Disorder or PTSD as a result of their hospitalization.

So, involuntary hospitalization can dramatically increase someone’s reluctance to be hospitalized, which leads them to avoid treatment with outpatient providers for fear they will be hospitalized again. Even people who don’t have anosognosia may feel this way after an involuntary hospitalization. They feel so violated that they stop treatment when released or avoid providers when they get worse. Instead, they figure they will tough it out on their own.

This works for some people whose symptoms sometimes get better on their own for a while—for example, people with major depression and people with bipolar disorder (though untreated mania can often lead to the hospital or jail). Untreated schizophrenia appears to be less likely to have substantial periods of significant symptom remission, though the intensity of those symptoms may wax and wane. Borderline personality disorder symptoms may also come and go, and PTSD isn’t usually a reason for hospitalization, though both these conditions can lead to psychosis, which can, in turn, lead to hospitalization. So, if you were someone who hated being hospitalized and knew your symptoms would probably eventually get better, why wouldn’t you avoid people and places that might get you hospitalized? This helps explain why many patient’s rights advocates campaign so ardently against involuntary hospitalization. They contend it does more harm than good.

Photo by Erik Mclean on Unsplash

And all this assumes the person got good, empathetic, and compassionate care while they were inpatient. There is no guarantee that they got that. I didn’t get it more than once. I sometimes got what I considered to be coercive care that bordered on malpractice. Inpatient care does not equate to optimal care. The general attitude is that the staff know best and you should just shut up and do what you’re told/take what is prescribed. The knowledge that they can keep you longer or sedate or restrain you leaves patients feeling like they have no choice but to submit. And there are more subtle punishments that they can impose on patients who are even mildly rebellious—as in wanting to discuss side effects before taking a new medication. Things like making you eat with your hands because you can’t have utensils. Or putting you on a ward with people who are visibly psychotic when you are not. Or refusing to let you go in your room during the day and requiring you to stay in sight at all times except when using the restroom which you have to ask permission to do.

So, you might be thinking this weighs the scale against involuntary hospitalization. But we have not talked about the small percentage of people that the patient’s rights advocates don’t like to talk about because, when you pin them down, they agree these folks need to be hospitalized. There are those so lost to psychosis they cannot fend for themselves in the world at all and are found doing things like playing in their feces in the gas station bathroom or running naked through traffic. Then there are the people who have become catatonic and will die if they aren’t treated because they have stopped eating and drinking. And finally, there are those who are a danger to other people due to mania or psychosis, whether due to mental illness or co-occurring substance use. They are unable to tell reality from delusion. Those who are manic may do things like drive at high speeds in residential neighborhoods or the wrong way on the freeway, believing they are invincible. Some people who are psychotic believe they are being spied upon or followed and believe their life is in danger. Or they have hallucinations that lead them to see enemies literally everywhere they look. Sometimes these people decide they must take action against their enemies and arm themselves or become physically violent. Everyone can usually agree that these people need to be involuntarily hospitalized.

Photo by Yousef Salhamoud on Unsplash

But what comes next? Sometimes people in these categories get conserved. But that’s a rare occurrence. The population of Sacramento County is about 1.6 million people. The last time I looked, we had about 150 people who had been LPS conserved. Instead of being conserved, nearly all of these individuals will be released within a few weeks. It is very likely they will stop treatment once released, whether intentionally because they have anosognosia, because they can’t tolerate medication side effects or don’t like the way the meds make them feel, or because they need someone to supervise their medication and there is no one to do so. Unfortunately, they often wind up back in the hospital for these same reasons. And conservatorship is rarely a permanent solution since LPS conservatorships must be renewed annually. If the person is doing well in a highly supervised but community setting, they are often released from conservatorship by the court. This usually means they are kicked out of the setting where they got stable, a recipe that often leads to a loss of stability and a return to the hospital.

For many people, including this group of individuals, there is a need for supported—often highly structured and supervised—living arrangements that simply don’t exist in most places in the US. That’s because funding for this type of housing is hard to come by. And there isn’t always the will and community support needed to overcome the barriers that keep these kinds of programs from being stood up, things like neighborhood resistance to such a facility. And, unless the person is conserved, these programs are voluntary. Residents can walk away at any time and no one can stop them.

Photo by Matt Silveira on Unsplash

If I were psychotic and had anosognosia, I would want to be involuntarily hospitalized and treated even if it required a court order. That’s because I would like to believe, once I got better, I would want to stay well and I like to think that I would retain insight once I recovered. This has been the case when I had mild anosognosia. Until you know whether someone’s anosognosia will or will not respond to treatment, involuntarily hospitalizing that person might be the only ethically right thing to do. I have read and heard accounts of people who went untreated for years who were very psychotic but did not cause a big enough problem for society that they got hospitalized. Once they got involuntary treatment, they recovered, and they were angry, very, very angry that no one had forced treatment on them sooner. This is not typical, but it does happen.

All of this underscores the messiness of involuntary hospitalization. You cannot guarantee that the person will get good treatment or that they will stay in treatment after they leave. You cannot guarantee that they will be grateful that they were involuntarily treated and you cannot guarantee that they won’t be pissed off that you waited so long in addition to being grateful for having their sanity restored. You cannot guarantee that you have not alienated that person for life and that they will never again come within shouting distance of a mental health provider (sometimes that gets generalized to ALL medical providers).

The truth is that most communities need better alternatives to involuntary hospitalization, like crisis stabilization units, wrap-around outpatient care, and supported living arrangements for people who have serious mental illness and are unable or unwilling to engage in traditional treatments with medications or for whom medications are not sufficient. The truth is that a tiny number of people need to be permanently LPS conserved and, in California, that is not going to happen. And the truth is that there will always be some people whose illness manifests in a way that makes involuntary hospitalization necessary at least temporarily, no matter what the patient’s rights advocates say.

Photo by V T on Unsplash

When my audience asked about committing people who clearly needed to be hospitalized, I demurred. I called it a slippery slope. I said society doesn’t have a good track record when it comes to due process for people who are insane or for protecting people from victimization once they’re in a facility. I didn’t acknowledge that we all knew some people need to get committed at least temporarily. I didn’t have time to go down that rabbit hole in what was supposed to be a 45-minute presentation. None of us was satisfied with my answer, but in the current political climate, everyone understood the implications. And that’s the really messy truth.