Expand choice-based and non-coercive services, not involuntary treatment
Content Note: Discussion of suicide.
Is expanding involuntary treatment really the solution?
During the recent BC provincial election, there was a lot of political discussion around mental health services, suggesting that more involuntary treatment was needed and would save lives. But, is expanding involuntary treatment really the solution?
I have been a member of the Lived Experience Experts group (LEEG) at Health Justice. I have lived experience of psychosis as well as involuntary treatment both in hospital and community. This blog post is based on the learning that has come from those experiences. It is based on things that happened to me firsthand as well as the stories others have shared with me.
Good mental health services should be holistic, offer choice, and be accessible to everyone in order to address the full complexity of mental health issues.
What gets offered involuntarily – particularly in hospital settings – tends to be limited and focused on biological interventions. Examples include medication and electro-convulsive therapy (ECT). Hospitals aren’t known for offering holistic care. Interventions like counselling or programs aimed at helping people regain lost roles don’t tend to be offered in hospital settings. At the same time, when someone is being treated involuntarily, it becomes very easy to dismiss their voice. There is less onus on offering choice under such circumstances than when someone is a voluntary patient and has the option of saying “no” if something isn’t a good fit.
In an involuntary setting, I had the experience of being made to take a medication with side effects that felt worse than what it was meant to treat. It was not until I became a voluntary patient and had the power to say I wouldn’t take that medication anymore that I was offered alternative medication choices. When I became a voluntary patient and my voice carried power, there were suddenly lots of medication options.
Not only is involuntary treatment limited in choice, it also has enormous potential for physical and psychological harm. As a result, people who need help are discouraged from seeking help because they fear the system that is supposed to be helping them. To make matters worse, people who do seek help can be turned away if their crisis doesn’t fit what the available services are geared toward addressing. Not receiving service with enough choice to be a good fit, or not getting any service at all, can lead to the kinds of crisis that result in death. To build trust and truly save lives, we need to expand choice-based and non-coercive types of services and make them accessible to those who need them, regardless of diagnosis.
Biological intervention is not enough
The public mental health system currently emphasizes a biomedical model, where mental health issues are thought to be mostly biologically-based and can be solved primarily through treatment like medication. Other services are offered but are treated as secondary. Not surprisingly, involuntary treatment, as it is offered today, is also primarily focused on the biomedical model that sees mental illness as the same as physical illness. I have been told in multiple venues that taking an antipsychotic medication for schizophrenia is like taking insulin for diabetes.
My experience of mental illness is that it is a unique category that doesn’t fully mirror physical illnesses. Illnesses involving psychosis go beyond the physical, and treatment needs to go beyond the medical model – not just as a “nice to have” secondary thing to do - but as an essential part of the approach. Mental illnesses can affect every aspect of a person’s life. People can end up finding school unmanageable and drop out. Friends can be lost. Jobs can be lost. Marriages can end. People can lose their housing. Dreams just disappear. People’s confidence in themselves can be deeply shaken.
Biological intervention is not the whole answer for many people. A holistic approach is needed to address the complexity of issues people face. It could include:
accessible and affordable counseling with a choice of approach and therapists funded by the Medical Services Plan (MSP) and that hospital emergency wards could link people to if not admitting them,
access to trauma-specific as well as trauma-informed services,
peer-support and peer-led programs,
programs like the defunded Access Community through English (ACE) program that helped people with serious mental illness learn English in a setting that took into account the challenges caused by illness,
other psychosocial rehabilitation programs that help people regain or find new roles, purposes, and meaning and
affordable and decent housing. It’s hard to recover without a home.
Involuntary treatment can cause harm
Involuntary treatment is not a solution to all issues. Not only is more involuntary treatment, in and of itself, not the answer to help people get better or to address crisis: it is frequently the cause of harm. Involuntary treatment as it is practiced today is traumatic in many ways, like:
being transported by police to hospital in handcuffs even if the person has not resisted in any way,
being coerced and losing any sense of agency,
being placed in “quiet rooms” (seclusion) for long periods with nothing to do,
witnessing others being placed in such rooms,
not having a private space to retreat to, while at the same time being surrounded by others who are in crisis,
having clothing forcibly removed (including underwear) and being made to wear hospital gowns that do not close properly in the back, and
not feeling respected.
The benefits do not always outweigh the risk
Treatment meant to help someone with an illness involving psychosis often has side effects that greatly impact quality of life and can also create health issues. Medications can cause metabolic symptoms, huge amounts of weight gain and conditions like diabetes. They can cause involuntary movements called tardive dyskinesia. Someone can start sticking their tongue out involuntarily.
They can also cause akathisia. I have experienced this myself. Akathisia sometimes gets described as restlessness because that is what it looks like. I experienced it as a horrible internal feeling that led me to need to fidget and move. I had difficulty sticking with something as simple as waiting in a line for coffee. It was a feeling so awful that it led me to consider suicide. I didn’t actually make a suicide attempt because I had an out: I could convince hospital staff that I was doing better, get myself discharged from hospital and go off the medication that was causing that problem. That is what I did the first time I was hospitalized. It wasn’t good for me to be off medication, and I am happy I eventually found one that works for me, but I know from this experience that medication side effects have the potential to lead to suicide.
People experiencing involuntary treatment receive treatment whether they consent or not. When someone is being treated involuntarily, it is the system that assesses, “do the benefits outweigh the risks?” Yet, the person receiving treatment is the one who experiences the results of the answer and knows better than anyone else how they feel. When people have no say in their treatment, and serious side effects like akathisia are downplayed, there is a risk of harm and even death. When there is a suicide, it is sometimes hard to tell if it was caused by illness or something like medication side effects.
Really Addressing Crisis
Conversations about involuntary treatment must address its consequences: people are afraid and discouraged from seeking help from the system because of the harm it can cause. To build trust in the system, we must take a holistic approach and offer choice so that people can choose interventions that work for them. Involuntary treatment should be a last resort.
The system has become aware of the need to offer trauma-informed services, but it needs to offer more trauma-specific services. We need to offer support to people that seek help in distress but may not have a diagnosis or condition that currently qualifies them for support. We could provide access to free, good-fitting counselling services, by funding counselling services through the Medical Services Plan (MSP). We need choice-based services and programs, including peer-support and peer-led programs to help people reclaim their sense of self and meaning. The system should include programs that support people in having lives that are meaningful for them. Examples of such programs include The Art Studios and Access Community through English (ACE), which have been impacted or lost due to underfunding. What a system is willing to fund reflects its priorities. The consistent underfunding and defunding of holistic options, along with emphasis on involuntary treatment as a solution, reflects a system that prioritizes crisis intervention based on the biomedical model.
To build something that works, mental health services need to emphasize a holistic approach that offers choice so that people find the support they receive helpful and are never turned away because their crisis doesn’t fit the services offered. No one should be left feeling hurt or traumatized by treatment - or from being turned away. A holistic, choice-based approach is a better solution to addressing crisis and saving lives than increasing involuntary treatment.