These are excellent questions. I was the person who made the call that resulted in an involuntary commitment for my best friend; I don't doubt that was what was needed at the moment. But the problem is that call resulted in a years-long odyssey through an institutional system that refused to listen to him, that devalued his own opinions about what he needed and why. He was compelled to take medication against his will, when he was lucid and knew exactly what was being done to him. The delusional episode lasted a short time, but the removal of his autonomy lasted for years and years. The problem is that it is impossible to achieve psychiatric recovery without wanting to recover, and if you're spending all of your time embittered about being involuntarily committed, you're unable to take charge of your own care and advocate for what you need for your own recovery -- you're stuck in a stew of resentment that is therapeutically counterproductive.
I think that people who have never themselves been on psych meds, or if they have, never had any particularly adverse side effects, tend to SERIOUSLY underestimate how bad it can be.
I was on Haldol for many years and did fine. Eventually, though, the pills began losing their desired effect while I got more and more adverse side effects. I would get slurred speech because I couldn't quite control my tongue movements, like my tongue felt thick and sluggish, and I got more and more facial ticks. I tried Abilify instead but it just knocked me out, I just slept and slept (even on a pretty low dosage) (I know this isn't a very common Abilify side effect, but it's still a known one that some people get), and decided that Haldol was less bad all things considered. Stil very bad though - as we say in Sweden, like choosing between cholera and the plague.
Eventually, as I've written about in numerous publications now, I learnt to manage medication-free (though that would certainly not have been possible unless my entire life situation had become very stable and idyllic).
As antipsychotic side effects go, mine were still on the mild side. Yet, if I imagine someone FORCING me to continue taking either Haldol or Abilify, that scenario is HORRIBLE. Absolutely HORRIBLE.
I think most sane people realize that it would be horrible FOR THEM if someone forcibly drugged them, day after day, and they suffered badly from the drug but it was still forced upon them. But they somehow can't transfer that insight to the mad, who are seen as a different class of people, and therefore what's forced upon us can't possibly be as bad as if someone did the same to a sane person.
Kantian philosopher Christine Korsgaard wrote about the following phenomenon in her book Fellow Creatures: We all have a vicious tendency to implicitly assume - even if we'd never explicitly SAY as much, or even explicitly THINK this to ourselves - that when people (or animals) who are unlike us are mistreated and made to suffer, it's bad, sure, but it can't possibly be AS bad as if the same thing happened to US. I think she's absolutely right in this, and it's a huge problem.
I've talked to this person who's suffered so, so horribly from medication side effects, and who said that she really wished there were a kind of inpatient treatment where you could check yourself in when you realize a psychotic episode is on the way, but you wouldn't have to go on meds. You could just stay at the ward with nice and calm nurses watching over you until you calmed down again and was fit to re-enter society. But unfortunately, there is no such service, and for that reason she has seriously contemplated suicide. (Now she's trying other strategies and solutions, I hope for the best, but - WHY is there no such option? WHY?)
I am commenting from the perspective of a parent-caregiver for an adult transgender daughter with profound and fixed treatment-resistant delusions and a spouse with major depression. Both have experienced psychiatric hospitalization. My comments are organized by item number in your original thoughts and questions:
1. My daughter spent a week in a traditional short-term psychiatric hospital and six weeks at a residential treatment center. When she was released, she talked for several years about how much the residential treatment helped her and how much she liked the employees who worked with her. Toward the end of her residential stay she came home for day visits. But, she always wanted to return in time for movie night with the other patients. She liked the experience so much that she wanted to take flowers to the residential treatment staff. Years later, as the symptoms of her illness worsened, the story of her experiences changed. She now describes it as a scary and traumatizing experience. My spouse was crying on my phone call with her during her latest psychiatric hospitalization for major depression. But she knew that she needed to be there. She chose to admit herself, both times she was hospitalized. But it was still an emotionally upsetting experience for her. Yet she has no regrets about choosing hospitalization--she thinks it was the right choice both times and she thinks it helped her. My point is that psychiatric illness affects a person's perceptions and memories. And, I think that can makes it hard to objectively assess the patient experience.
2. I think community care in a comfortable and inviting setting would increase the rates at which patients admit themselves for voluntary care. I haven't seen it in action, but San Francisco seems to have a network that includes various levels of community care.
3. I think national and state data on psychiatric outcomes are unavailable because people don't like accountability. Such data is also lacking for police departments. As a retiree from a higher education institution in Texas, I was responsible for overseeing the calculation and submittal of performance measures that state legislators imposed on public universities. I was also involved in recommending definitions for some of those measures along with representatives of higher education institutions. But, it was a third-party agency with auditing authority that made final decisions about the measure definitions. That agency collected the measures and allowed universities to submit explanatory comments with the measures. An organization like the American Psychiatric Association could do something similar with advisory input from psychiatrists.
4. My only comment is that I trust psychiatrists to do the best they can with the tools they have available, but modesty about medical capabilities and honesty about risks is appreciated. One of the most helpful things a psychiatrist said about my daughter, on her release for residential treatment, was "we do the best we can to achieve reasonable control of symptoms, but awakenings are rare." That statement gave me, for the first time, permission to accept a partial response to medication rather than constantly wondering if we should be abandon a medicine to try something new after seeing breakthrough symptoms.
5. I think rules for involuntary psychiatric care vary considerably by state. In Texas, I believe the consent of a judge and two psychiatrists is required. In fact, it is so difficult to get a psychotic and homeless person involuntarily committed in Texas that a member of NAMI somehow persuaded her son to get into her car and she took him to another state where she was able to get him admitted. On the other hand, if a serious crime is committed, getting a person involuntarily detained in jail and forcibly medicated to restore competency so they can face charges for their behaviors while incompetent is not a problem. Make that make sense.
6. In Texas, psychiatrists lobbied for the authority to detain a patient for up to 4 hours to seek an involuntary commitment order, if they were concerned about the safety of a patient who wished to leave a hospital after voluntarily entering it. I gave my two minutes of passionate testimony in favor of the legislation with ultimately passed both houses of the legislature with majorities large enough to override any veto. Scientologists, home schoolers, anti-vaxxers, and civil libertarians joined in writing a letter to the governor seeking a veto. The governor vetoed the bill on the last day of the legislative session, leaving no time for an override vote. He claimed his veto was unrelated to the letter.
7. I think advances that dentistry, pediatrics, and obstetrics have made in patient comfort are good examples for psychiatry. Because the emotional symptoms of a psychiatric crisis are traumatizing in themselves, doesn't it make sense for psychiatric patients to also have a comforting environment that reduces stress? The psychiatric hospitals where my family members have spent time are dull and foreboding places even when compared to general hospitals.
8. Yes. A member of the African American community told me that some African American families have plans in place for how they can ask friends or family members for help in a crisis situation to avoid calling the police. NAMI should advise the families of persons with psychiatric illnesses to do the same. First-responders and families can also do a better job of collaboratively improving the experiences of persons in crisis. There are some police departments that have rarely shot dead a person without a gun or a toy gun; there are other police departments that frequently kill subjects with knives or blunt objects--the difference appears related to community expectations, police leadership, and organization culture according to criminologists who have studied the issue. Police should pledge to family caregivers of persons with serious mental illness that they will not use deadly force as long as the person with mental illness has no gun or toy gun--some departments are already very close to accomplishing this outcome.
9. Texas has psychiatric advance directives. But the law allows a patient to tear them up in the middle of a crisis or invalidate it simply by saying they do not want the advance directive to be followed. That makes them pretty useless.
10. More diversion centers that allow voluntary walk-ins and no-refusal police drop-offs in lieu of jail are needed for persons in a psychiatric crisis. Research shows they reduce incarceration, though recent research shows they do not seem to reduce police use of force.
11. I think whether psychiatric hospitalizations reduce suicide is a complicated question. As the mental healthcare umbrella has grown, too much research has looked at all patients combined rather that stratifying patients by diagnosis. Looking at mental illness as a single entity is like looking at skin conditions like a single entity: If you tell person with skin conditions they are likely to be fine without any intervention, you are probably going to be right most of the time. But if they have melanoma, they will not be fine. The huge difference between serious psychiatric illnesses and less serious issues demands smarter policies that are specific to diagnoses.
> What would it mean instead to decide, in situations of incapacity, according to an individual’s will and preferences that were expressed when they were competent (and where unknown, the best interpretation of their will and preferences)? Is lack of decision-making capacity the real justification for involuntary treatment, or is it merely an excuse, and the actual drivers are considerations of risk and control?
I thought this was the purpose of psychiatric directives. Are these not accepted by US courts?
These are excellent questions. I was the person who made the call that resulted in an involuntary commitment for my best friend; I don't doubt that was what was needed at the moment. But the problem is that call resulted in a years-long odyssey through an institutional system that refused to listen to him, that devalued his own opinions about what he needed and why. He was compelled to take medication against his will, when he was lucid and knew exactly what was being done to him. The delusional episode lasted a short time, but the removal of his autonomy lasted for years and years. The problem is that it is impossible to achieve psychiatric recovery without wanting to recover, and if you're spending all of your time embittered about being involuntarily committed, you're unable to take charge of your own care and advocate for what you need for your own recovery -- you're stuck in a stew of resentment that is therapeutically counterproductive.
This was a great read.
I think that people who have never themselves been on psych meds, or if they have, never had any particularly adverse side effects, tend to SERIOUSLY underestimate how bad it can be.
I was on Haldol for many years and did fine. Eventually, though, the pills began losing their desired effect while I got more and more adverse side effects. I would get slurred speech because I couldn't quite control my tongue movements, like my tongue felt thick and sluggish, and I got more and more facial ticks. I tried Abilify instead but it just knocked me out, I just slept and slept (even on a pretty low dosage) (I know this isn't a very common Abilify side effect, but it's still a known one that some people get), and decided that Haldol was less bad all things considered. Stil very bad though - as we say in Sweden, like choosing between cholera and the plague.
Eventually, as I've written about in numerous publications now, I learnt to manage medication-free (though that would certainly not have been possible unless my entire life situation had become very stable and idyllic).
As antipsychotic side effects go, mine were still on the mild side. Yet, if I imagine someone FORCING me to continue taking either Haldol or Abilify, that scenario is HORRIBLE. Absolutely HORRIBLE.
I think most sane people realize that it would be horrible FOR THEM if someone forcibly drugged them, day after day, and they suffered badly from the drug but it was still forced upon them. But they somehow can't transfer that insight to the mad, who are seen as a different class of people, and therefore what's forced upon us can't possibly be as bad as if someone did the same to a sane person.
Kantian philosopher Christine Korsgaard wrote about the following phenomenon in her book Fellow Creatures: We all have a vicious tendency to implicitly assume - even if we'd never explicitly SAY as much, or even explicitly THINK this to ourselves - that when people (or animals) who are unlike us are mistreated and made to suffer, it's bad, sure, but it can't possibly be AS bad as if the same thing happened to US. I think she's absolutely right in this, and it's a huge problem.
I've talked to this person who's suffered so, so horribly from medication side effects, and who said that she really wished there were a kind of inpatient treatment where you could check yourself in when you realize a psychotic episode is on the way, but you wouldn't have to go on meds. You could just stay at the ward with nice and calm nurses watching over you until you calmed down again and was fit to re-enter society. But unfortunately, there is no such service, and for that reason she has seriously contemplated suicide. (Now she's trying other strategies and solutions, I hope for the best, but - WHY is there no such option? WHY?)
I am commenting from the perspective of a parent-caregiver for an adult transgender daughter with profound and fixed treatment-resistant delusions and a spouse with major depression. Both have experienced psychiatric hospitalization. My comments are organized by item number in your original thoughts and questions:
1. My daughter spent a week in a traditional short-term psychiatric hospital and six weeks at a residential treatment center. When she was released, she talked for several years about how much the residential treatment helped her and how much she liked the employees who worked with her. Toward the end of her residential stay she came home for day visits. But, she always wanted to return in time for movie night with the other patients. She liked the experience so much that she wanted to take flowers to the residential treatment staff. Years later, as the symptoms of her illness worsened, the story of her experiences changed. She now describes it as a scary and traumatizing experience. My spouse was crying on my phone call with her during her latest psychiatric hospitalization for major depression. But she knew that she needed to be there. She chose to admit herself, both times she was hospitalized. But it was still an emotionally upsetting experience for her. Yet she has no regrets about choosing hospitalization--she thinks it was the right choice both times and she thinks it helped her. My point is that psychiatric illness affects a person's perceptions and memories. And, I think that can makes it hard to objectively assess the patient experience.
2. I think community care in a comfortable and inviting setting would increase the rates at which patients admit themselves for voluntary care. I haven't seen it in action, but San Francisco seems to have a network that includes various levels of community care.
3. I think national and state data on psychiatric outcomes are unavailable because people don't like accountability. Such data is also lacking for police departments. As a retiree from a higher education institution in Texas, I was responsible for overseeing the calculation and submittal of performance measures that state legislators imposed on public universities. I was also involved in recommending definitions for some of those measures along with representatives of higher education institutions. But, it was a third-party agency with auditing authority that made final decisions about the measure definitions. That agency collected the measures and allowed universities to submit explanatory comments with the measures. An organization like the American Psychiatric Association could do something similar with advisory input from psychiatrists.
4. My only comment is that I trust psychiatrists to do the best they can with the tools they have available, but modesty about medical capabilities and honesty about risks is appreciated. One of the most helpful things a psychiatrist said about my daughter, on her release for residential treatment, was "we do the best we can to achieve reasonable control of symptoms, but awakenings are rare." That statement gave me, for the first time, permission to accept a partial response to medication rather than constantly wondering if we should be abandon a medicine to try something new after seeing breakthrough symptoms.
5. I think rules for involuntary psychiatric care vary considerably by state. In Texas, I believe the consent of a judge and two psychiatrists is required. In fact, it is so difficult to get a psychotic and homeless person involuntarily committed in Texas that a member of NAMI somehow persuaded her son to get into her car and she took him to another state where she was able to get him admitted. On the other hand, if a serious crime is committed, getting a person involuntarily detained in jail and forcibly medicated to restore competency so they can face charges for their behaviors while incompetent is not a problem. Make that make sense.
6. In Texas, psychiatrists lobbied for the authority to detain a patient for up to 4 hours to seek an involuntary commitment order, if they were concerned about the safety of a patient who wished to leave a hospital after voluntarily entering it. I gave my two minutes of passionate testimony in favor of the legislation with ultimately passed both houses of the legislature with majorities large enough to override any veto. Scientologists, home schoolers, anti-vaxxers, and civil libertarians joined in writing a letter to the governor seeking a veto. The governor vetoed the bill on the last day of the legislative session, leaving no time for an override vote. He claimed his veto was unrelated to the letter.
7. I think advances that dentistry, pediatrics, and obstetrics have made in patient comfort are good examples for psychiatry. Because the emotional symptoms of a psychiatric crisis are traumatizing in themselves, doesn't it make sense for psychiatric patients to also have a comforting environment that reduces stress? The psychiatric hospitals where my family members have spent time are dull and foreboding places even when compared to general hospitals.
8. Yes. A member of the African American community told me that some African American families have plans in place for how they can ask friends or family members for help in a crisis situation to avoid calling the police. NAMI should advise the families of persons with psychiatric illnesses to do the same. First-responders and families can also do a better job of collaboratively improving the experiences of persons in crisis. There are some police departments that have rarely shot dead a person without a gun or a toy gun; there are other police departments that frequently kill subjects with knives or blunt objects--the difference appears related to community expectations, police leadership, and organization culture according to criminologists who have studied the issue. Police should pledge to family caregivers of persons with serious mental illness that they will not use deadly force as long as the person with mental illness has no gun or toy gun--some departments are already very close to accomplishing this outcome.
9. Texas has psychiatric advance directives. But the law allows a patient to tear them up in the middle of a crisis or invalidate it simply by saying they do not want the advance directive to be followed. That makes them pretty useless.
10. More diversion centers that allow voluntary walk-ins and no-refusal police drop-offs in lieu of jail are needed for persons in a psychiatric crisis. Research shows they reduce incarceration, though recent research shows they do not seem to reduce police use of force.
11. I think whether psychiatric hospitalizations reduce suicide is a complicated question. As the mental healthcare umbrella has grown, too much research has looked at all patients combined rather that stratifying patients by diagnosis. Looking at mental illness as a single entity is like looking at skin conditions like a single entity: If you tell person with skin conditions they are likely to be fine without any intervention, you are probably going to be right most of the time. But if they have melanoma, they will not be fine. The huge difference between serious psychiatric illnesses and less serious issues demands smarter policies that are specific to diagnoses.
> What would it mean instead to decide, in situations of incapacity, according to an individual’s will and preferences that were expressed when they were competent (and where unknown, the best interpretation of their will and preferences)? Is lack of decision-making capacity the real justification for involuntary treatment, or is it merely an excuse, and the actual drivers are considerations of risk and control?
I thought this was the purpose of psychiatric directives. Are these not accepted by US courts?