That’s my brother Brennan. He’s the most creative person I know. A gifted artist. Talented musician. Amazing sense of humor. Brennan was the best big brother a little girl could have asked for. Some of my favorite childhood memories were of Brennan “reading” to me, but making up his own (infinitely more entertaining) story to go along with the pictures on each page. During the holidays, I used to whole heartedly believe I had my very own special elf who would leave me notes and treasure maps to little presents hidden throughout the house – all Brennan’s work. He was always up for a game of make believe anything, and any pretend world was exponentially enhanced once Brennan’s magically creative mind got involved.
Brennan had his first psychotic episode when he was about 18. Since then, Brennan has been on every antipsychotic medication that’s out there, in and out of hospitals, living on and off the streets. On his best days, Brennan is still a shadow of his former self. It’s hard for him to engage in conversation, as he’s distracted and tormented by voices in his head. A naturally sweet natured person, paranoia often makes him become combative and disrespectful to his loved ones. He has periods of abusing substances, because they work better than his prescriptions at providing relief from his painful symptoms. It doesn’t really occur to Brennan to change his clothes, brush his teeth, or cut his nails, making it all the harder for him to fit in with society. It’s been over 10 years now, and Brennan continues to struggle, and it’s certainly not for a lack of a family that cares about him. Unfortunately, a loving family isn’t nearly enough to treat schizophrenia, and the type of care that Brennan really needs simply does not exist. Brennan is one of many.
A large part of the problem is that Brennan is not compliant with his antipsychotic medication. In fact, about 50% of those with schizophrenia are non-compliant with their medication for several reasons.
Medication doesn’t help everyone equally.
For some people, medication is a gift that enables them to function and even thrive in society. However, there are some with treatment resistant illnesses, for whom the medications available simply don’t do much. My brother for example, continues to hear voices in his head all day, every day, with or without medication. Medication helps him function to an extent that his loved ones can notice a positive difference, but not quite enough that he can notice a positive difference.
Unwanted side effects.
Not only do the medications available not always work, but they often cause side effects that lead individuals to stop taking them. Side effects can include movement disorders, weight gain, sexual dysfunction, and more. Brennan complains that his medication makes him feel “doped up”, like “a zombie”, and unable to think clearly.
The symptoms of schizophrenia (and other similar disorders) make it difficult for many individuals to care for themselves. Simple activities of daily living such as bathing, brushing one’s teeth, and even eating can go ignored. Remembering to take medication daily is yet another responsibility that’s difficult for someone with mental illness to maintain. Without help/supervision, many with schizophrenia simply won’t remember to take their medication regularly. Some medications are becoming available in monthly injections, but many people are not open to being injected with a month’s dose of medication for all the other reasons discussed.
It is the very nature of schizophrenia to not have good insight into how mentally ill you are. In other words, many are resistant to taking medication because they don’t believe they are sick. In my brother’s case, the less medicated he is, the less he believes he needs medication. Many with schizophrenia also experience paranoia, making it even less likely that they will listen to the advice of medical professionals or their loved ones.
As Brennan is an adult, he cannot be forced to take medication against his will. So when he stops taking his medication, our family is left with no choice but to stand by and watch him slip into complete madness, waiting for him to deteriorate enough that he can be involuntarily admitted to an inpatient psychiatric unit. For that to happen Brennan has to be an imminent danger to himself or others, which essentially means he must have already hurt himself/someone else, or verbalized a specific plan to hurt himself/others. He’ll be inpatient just long enough to stabilize his medications (maybe a week or two at most), and for him to assure everyone he’s not going to hurt himself or anyone else. Then he’s released back home, where we know it’s only a matter or time before the same cycle repeats itself all over again, like it has for the past 10 years. Like so many other families in our position, we are put in the position of trying to reason with a psychotic person to stay on their medication. We can try to make medication compliance a condition of living at home, but in his psychotic state Brennan often decides that living on the street is the favorable option – leaving my family to worry that he’ll be attacked, freeze, get arrested, etc. In fact, Brennan has been brutally attacked while living on the streets.
I share Brennan’s story because I want to put a face to a need that our society must address. Brennan is one of many chronically mentally ill citizens for whom there is inadequate treatment and support available. My family is one of many, trying our best but failing to provide our loved one with the care they need and deserve. The severely mentally ill often cannot advocate for themselves, and so they go underserved and underrepresented. Analogous to the modern day leper, so many like my brother are ostracized, stigmatized, and ignored, making about 25% of the homeless population due to no fault of their own, merely their unfortunate genetic predispositions. We as a society cannot continue to ignore the needs of our fellow humans with mental illness.
Why do so many individuals with mental illness go untreated? Why are so many left to roam the streets?
“Aren’t there places for people like that?”, I’m sometimes asked.
“Not really, no.”
A Little History Lesson
When you think of mental institutions, scenes from One Flew Over the Cuckoo’s Nest might come to mind, but psychiatric hospitals weren’t always such dreadful places. Psychiatric hospitals are rooted in an early 19th century movement called moral treatment. Prior to this, the “insane” were often put in shackles, isolated from society, neglected, and subjected to tortuous “treatments”. Moral treatment was based in the idea that mental illness could be treated by providing a therapeutic environment. The leaders of the moral treatment movement had chains and shackles removed from their hospitals, banned physical punishment, and replaced dungeons with sunny ventilated spaces that patients could walk about freely. Employees were carefully selected to deliver humane treatment with a balance of empathy and authority. Retreats where patients functioned as small communities emphasized a balanced routine of rest, talk, and manual work. In hospitals in the US, attendants would read to the patients, talk with them, and go on regular walks with them. Recovery rates with moral treatment were showing promise, and many countries began passing laws requiring local governments to build mental hospitals.
What the eff happened?
By the early 19th century these mental hospitals were growing in size and number, eventually becoming large out-of-town institutions. Economic and social changes caused these institutions to become grossly over-populated and far too understaffed to adhere to the individualized moral treatment philosophy. Eventually little to no therapy of any kind was being provided, and these institutions essentially became inhumane warehouses for the mentally ill.
In the mid 20th century anti-psychotic medications began to come on the scene and successfully treat many individuals with severe illnesses like schizophrenia. The populations in mental institutions began to drop dramatically as many patients were able to return home. However by this time, attention had already been called to the terrible conditions, and there was a movement to reform the asylum based mental-health care system. The anti-psychiatric movement gained popularity along with the counterculture movement of the 60s, and pushed for total de-institutionalization. The anti-psychiatrists emphasized the individual rights of the mentally ill (such as the right to deny treatment), and criticized psychiatry for pathologizing/diagnosing those who thought/acted differently. The majority of psychiatric hospitals around the world began to close, and the few that remained significantly decreased the amount of beds available and the duration of stay.
So what now?
The new answer was community-based mental health treatment – a system based on the idea of getting the mentally ill treated and integrated back into society, as opposed to isolated and neglected. Sounds like a great idea, but unfortunately the follow-through has translated into a shortage of space in psychiatric hospitals, leading to pressure to quickly release patients. Patients are “stabilized” until they no longer present a threat to themselves or others, then they’re referred to outpatient services from an array of different providers such as case-managers, psychologists, psychiatrists, community mental health centers, nursing homes, workshops, etc.
Without the asylums, centrality of mental health care was lost, and the treatment efforts of the new system are often disjointed and inadequate. I currently work in community health care, and I’ve seen the system truly help many people recover from their mental illnesses. However, there is a portion of the population most in need for which the system is inappropriate and unhelpful, yet there’s no other option for them.
Flaws in the System
No long-term treatment
The current system does not seem to adequately address the needs of chronically and severely mentally ill. There are those for whom no amount of group therapy or medication will enable them to completely care for themselves. Often responsibility for the long-term care of mentally ill falls back on their families or other unofficial caregivers, but societal changes (economic change, rise in divorce, rise in women entering the workforce) makes this a challenge to say the least. Families are undereducated about their loved one’s illness, and under equipped to provide the care and supervision necessary, causing stress and conflict within households, only adding to psychological distress. Thus many individuals, such as my brother, are frequently rehospitalized, and many end up living on the street or in jail.
Imminent harm to oneself or others
In order for someone to be involuntarily admitted for treatment, they must pose an imminent threat to the safety of themselves or others. In other words, they must have already acted violently against themselves or someone else, or verbalized a specific plan to hurt themselves or someone else. I understand the importance of strict criteria when it comes to taking away anyone’s freedom, especially considering the days when someone could be sent to a mental institution against their will simply for being nuisance. However, the criteria of imminent harm poses problems. All too often by the time a person is dangerous enough to be involuntarily committed, it’s too late. A clinician or family member might have a strong suspicion that an individual is a risk to themselves or others, but their hands are often tied as long as the person denies any plan to harm. Many individuals who truly want to act out a plan to hurt themselves or someone else know enough to keep their mouth shut.
Right to deny treatment
Within the same issue of the right to deny treatment, is the right to deny medication. Philosophically I understand the dangers and the violation of human rights involved in forcing an individual to take a medication they don’t want to take. However, a problem arises when it comes to illnesses such as schizophrenia, in which the very organ needed to make a responsible decision about treatment is where the disorder lies. We wouldn’t put the burden of making treatment decisions on someone with dementia, and allow them to choose to wander the streets. Yet we expect someone with schizophrenia to choose whether or not to be treated, and allow them to go homeless as if it’s their responsibility to change their situation.
This highlights part of the problem, that schizophrenia and similar mental disorders are still stigmatized almost as character flaws rather than medical conditions. But my brother didn’t choose to become mentally ill. Brennan already had all his rights to normal happy life taken from him through no fault of his own, and rather than receiving sympathy and support from society, he is ostracized and neglected.
What’s the answer?
Our culture needs to stop turning a blind eye to our fellow citizens with mental illness. Mental institutions were shut down due to inhumane conditions, but so many of the residents were left to live on the streets. At least the institutions provided a roof over their heads. Much of the inhumanity present in the institutions was due to overcrowding and understaffing, but with modern anti-psychotic medications the number of individuals who remain chronically and severely mentally ill has decreased. The individualized therapeutic environments that began with moral treatment did benefit patients, and should be revisited as long-term treatment options for the chronically mentally ill. The chronically mentally ill don’t deserve to be locked away in isolation, nor do they deserve to be banished to the streets. They deserve to participate as members of a community that supports their mental health. A community that does not view them as a burden, but as individuals capable of long term growth and recovery. They do not deserve to be passed from one program to another, but to be able to work within a stable system that’s working for their stability.
I don’t know the person Brennan would have become if he never developed schizophrenia, and honestly, I try not to think about it. I do know that Brennan has contributed to my life immeasurably even with his diagnosis, but that he still has much more offer this world. I know we won’t get to see the full impact of Brennan’s human potential without a therapeutic environment that suits his mental health needs. Brennan is one of many.