There is often debate about whether involuntary treatment works if the individual is not ready to engage in their own recovery. Individual choice of treatment is always preferable, but not always safe for the patient or others.”
SUMMARY: Patients with psychiatric disorders refuse medications for a variety of reasons, including experience with, or fear of, side effects. In other cases, the refusal is based on lack of awareness of illness (anosognosia) or on delusional beliefs. Many such patients must ultimately be medicated involuntarily. Studies suggest that the long-term effects of involuntary medication on individuals with schizophrenia and manic-depressive illness (bipolar disorder) are more beneficial than is commonly thought. In most studies, the majority of patients retrospectively agreed that the use of involuntary medication (i.e. involuntary (forced) treatment) had been in their best interest. Anecdotal claims by opponents of forced treatment that involuntary treatment has widespread, devastating, and lasting effects are not supported by these studies.
“We already knew AOT an effective treatment option that saves lives. The report shows it saves money, too, even in geographically different settings where it is being put to work in dramatically different ways.” Doris A. Fuller, executive director of the Treatment Advocacy Center.
Last year in Maricopa County, Arizona, there were 3,600 Court Ordered Evaluations (COE) requested. Of those evaluations, 2,600 Mercy Care adult members were assigned Assisted Outpatient Treatment (AOT). In order for a person to meet criteria for court ordered psychiatric treatment under Title 36, they must be either unwilling or unable to accept treatment voluntarily. “Unable” would apply to those who lack sufficient understanding of their psychiatric condition, or of the advantages vs. disadvantages of various treatment options, to make an informed decision, even after efforts were made to inform them fully. Involuntary treatment does not equate with “medication only”, as medication is not the sum total of psychiatric treatment; while it has a major role for treatment of some major mental illnesses, for other conditions it is less central to the treatment plan. For example, a person who is acutely distraught due to a life event (e.g. death of a spouse) might, in rare cases, need involuntary hospitalization if he/she became suicidal and was unwilling to seek help, but medication might not be required in that situation. Psychotherapy and counseling may be a more sensible option.
In Arizona, AOT is the Title 36 Court Ordered Treatment (COT) which allows a certain number of involuntary inpatient days each year and appoints an outpatient provider responsible for supervising and administering the outpatient treatment with the option of forced administration of medication on an outpatient basis. The mental health court has the authority to bring the person back into an inpatient setting at any time (the outpatient team can request that the judge order the person back to the hospital) as long as there are inpatient days remaining on the order. These 2,600 Mercy Care members are in our SMI, ACC, and ALTCS plans. In addition to Mercy Care, there are another 6 ACC plans and 1 other ALTCS plan in Maricopa County which also have members on COT. AHCCCS recently implemented identification of COT members statewide so AHCCCS would be able report how many adults statewide are on COT.
For Assertive Community Treatment (ACT) team providers, findings include:
- Psychiatric hospitalizations per 1000 members have decreased 21% (compared to an 8% reduction of psychiatric hospitalization in prior year)
- Medical hospitalizations per 1000 members have decreased 12%;
- Emergency department visits per 1000 members have decreased by 11% (compared to a 6% reduction in prior year);
- Homelessness per 1000 members has decreased by 19%
For Forensic ACT team providers, findings include:
- A forensic ACT team achieved a 57% reduction in the number of jail bookings;
- A 54% reduction in psychiatric hospital admission (compared to a 31% reduction in prior year);
- An 27% reduction in Emergency department visits (compared to an 18% reduction in prior year); and
- A 45% reduction in medical admissions
Court-ordered treatment (COT -a type of involuntary treatment-) in the community reduces taxpayer costs associated with untreated serious mental illness for individuals stuck in the “revolving door” of repeated hospitalization, incarceration and other consequences of non-treatment, according to a report issued Wednesday.
The study, conducted by Health Management Associates, found that the costs of serving clients in assisted outpatient treatment (“AOT”) were more than offset by the reduced need for inpatient hospitalization and other high-cost services. A net public savings resulted.
Thomas Insel, director of the National Institute of Mental Health, has estimated that the total cost of non-treatment to the government—including things like Medicare, Medicaid, disability support and lost productivity—is as much as $317 billion per year. Other studies have suggested that it costs federal, state and local governments $40,000 to $60,000/year to care for a single homeless person with a serious mental illness. There are roughly 250,000 mentally ill homeless people in the U.S. today. New Study: “Assisted Outpatient Treatment Saves More Taxpayer Money Than It Costs” Arlington, VA (PRWEB) February 18, 2015
Nine patients, seven with schizophrenia and two with bipolar disorder, refused medication when admitted to a psychiatric unit. All nine were given a single injection of long-acting fluphenazine decanoate. At the end of two weeks, their symptoms were markedly improved (BPRS improved from 10.4 to 4.1), and all were accepting medication voluntarily. Keisling R. “Characteristics and outcome of patients who refuse medication.” Hospital and Community Psychiatry 34:847–848, 1983.
Twelve patients refused medication when admitted to a psychiatric unit. Three-quarters of them were diagnosed with schizophrenia or bipolar disorder. Compared to a control group that accepted medication, the refusers had less insight into their illness, were more psychotic, had higher mood elevation, and were more grandiose. After two weeks of medication, six of the patients (50 percent) no longer wished to refuse medication. “They were more likely to view medications as important for their illness and were less likely to believe in alternative treatments.” The other six patients “still preferred to refuse treatment despite considerable improvement in their clinical condition.” Marder SR et al. “A study of medication refusal by involuntary psychiatric patients.” Hospital and Community Psychiatry 35:724–726, 1984.
Twenty-four patients who had been involuntarily medicated with antipsychotic medication were interviewed at the time of discharge from the hospital. Sixteen (67 percent) were diagnosed with schizophrenia or bipolar disorder, and 5 more (21 percent) with atypical psychosis. Thirty-three percent of the patients said they had refused medication because they believed they had no need for it, 29 percent said they had refused medication because of “severe confusion or psychotic ideation,” and 17 percent “stated that they did not know why they [had] refused medication.” At discharge, 17 patients (71 percent) agreed that the decision to involuntarily medicate them had been correct and agreed with the statement: “If I become ill again and require medication, I believe it should be given to me even if I don’t want it at the time.” The 7 patients (29 percent) who disagreed scored high on measures of grandiosity, hostility, and suspiciousness; 6 of them had a diagnosis of bipolar disorder. The authors concluded that “it is impossible to avoid the conclusion that the treatment refusal of every patient in our sample was influenced by psychosis.” Schwartz HI et al. “Autonomy and the right to refuse treatment: patients’ attitudes after involuntary medication.” Hospital and Community Psychiatry 39:1049–1054, 1988.”
Eleven patients who had been forcibly medicated during their psychiatric hospitalization were retrospectively interviewed. Seven strongly agreed and two somewhat agreed (thus 82 percent total) that their involuntary treatment had been useful. Seide M et al. “The reluctant psychiatric patient: ethics and efficacy around the issue of forced medication” (Session 2219). American Public Health Association 117th Annual Meeting, Chicago, October 24, 1989.
Seventy-nine patients who had been placed under guardianship, 75 (95 percent) of whom had been involuntarily medicated, were asked to retrospectively fill out a questionnaire. Eighty-seven percent of the patients had been diagnosed with schizophrenia or bipolar disorder. The results were as follows:
Do you have a mental illness?
- definitely/probably not – 47%
- don’t know – 9%
- definitely/probably do – 44%
How helpful was your guardianship?
- very/fairly helpful – 45%
- neutral – 21%
- very/fairly unhelpful – 34%
There was a high correlation between patients who believed they had a mental illness and those who found the guardianship helpful (p < .01). The authors concluded that “although a majority of the patients were against enforced treatment in principle, often because they thought it conflicted with their civil rights, most found the actual experience, including medication, to be helpful.”
Adams NHS and Hafner RJ. “Attitudes of psychiatric patients and their relatives to involuntary treatment.” Australian and New Zealand Journal of Psychiatry 25:231–237, 1991.
Retrospectively, 18 patients (60 percent) said that having forced medication was a good idea, 9 (30 percent) disagreed, and 3 (10 percent) were unsure. Most of those who disagreed had either paranoid schizophrenia or bipolar disorder with grandiosity. The authors concluded that “forced medication frequently restores the capacity to make competent decisions and often results in a more rapid return of freedom to be discharged from involuntary hospitalization.” Greenberg WM et al. “Patients’ attitudes toward having been forcibly medicated.” Bulletin of the American Academy of Psychiatry and the Law 24:513–524, 1996.
Tom Szasz was the probably the greatest defender of patient rights since Pinel (the father of modern psychiatry) who, two centuries ago, started the profession off on the right foot by releasing the mentally ill from their chains.
Tom’s landmark book “The Myth of Mental Illness”, written one half century ago, contained a crusading Bill of Rights for psychiatric patients. He argued passionately for the dignity and freedom of choice of mentally ill inmates who were then often warehoused for life in hospitals that were aptly compared to snake pits. Allen J Frances M.D posed to Tom a hypothetical in which his son was having a transient psychotic episode, was hearing voices commanding that he kill himself, felt compelled to act on this, and refused treatment. As a father, would you stand by your libertarian principles or protect your son from himself, even if this required coercion. Tom smiled ruefully and said: “I am a father first and protector of human rights second.
Leon’s story:
My story begins as a young man from Ohio. I was born in a small football city. So much so, that all of the little boys are born with small orange and black footballs in their cribs! I was very active in sports and performance in school. An aspiring actor as it were. The town I was raised in was also known for being a city of parties in addition to having a talented football team.
My teenage years were filled with parties, alcohol, marijuana, girls, and excitement. But my relationship with alcohol and marijuana were anything but standard. I found myself using pot every day habitually and drinking on the weekends in excess routinely. This carried into my early twenties. Being a workaholic in addition to an addict eventually caught up to me. I had a mental breakdown in the workplace, which lead to me checking myself into a psychiatric hospital. I was diagnosed as having bi-polar disorder and was later diagnosed as having schizoaffective disorder.
Fast forward to the age of twenty-five. At this point, I was prescribed medication to take care of my symptoms. However, I chose to forgo my medication in favor of self-medicating with marijuana. The marijuana only perseverated my symptoms as I began to experience auditory hallucinations and delusions. One day, while I was in a moment of delirium, a relative and I got into an altercation that resulted in me hurting the other person. I was arrested and eventually sentenced to stay at the Arizona State Hospital for a very extended period of time.
It was at this point that I had a choice to make. I could retreat and isolate back to my room where I could wait out my time – only to be released and continue my tragic cycle. Or I could make the best out of a tough situation. I chose the latter! First, I chose to take college courses while in the hospital. I was one of only three people who had ever finished their Associates degree in the long history of the State Hospital. Then I opted to join the Arizona State Hospital Human rights committee along with being a representative of the Community Reintegration Unit to the hospital administration during my stay. I was able to assist in reaching agreements for new privileges for us, the patients on my unit. When I was awarded access to passes to the community, I found a job at a local hobby shop where I worked during the day and then returned to the hospital in the evening. And I also received my Peer Support Specialist Certification and CPR certification from Hope Lives – Vive la Esperanza. Additionally, I became involved in Alcoholic Anonymous and found a sponsor who walked me though the principles of the program. My goal became to leave a legacy for the other patients to follow and model hope and recovery for them.
When I was released from the hospital I was destitute. I relied on the kindness and guidance of my relatives, friends, sponsor, and clinical team. Eventually, my journey lead me to MARC Community Resources where I got involved in the Work Adjustment Training Program. I started in the classroom, teaching vocational skills to the other members. Eventually, the coordinator was impressed enough with my skills to hire me on as staff for MARC! This was a windfall for me. I continued to teach in addition to supervising the participants of the program at the St. Mary’s Food Bank in Phoenix. I found my skills rapidly growing – both as a teacher and advocate as I became a member of the AHCCCS Behavioral Health Planning Council. Later, I was promoted at MARC to become the Peer Support Training Coordinator and Trainer. I am currently the trainer along with my co-facilitator Bruce Purcell. I still teach vocational skills and I also have the privilege of bringing the Work Adjustment Training Program to the patients of the Arizona State Hospital as a representative of MARC… life really has come full circle!
In short, my experience in the hospital was a blessing in disguise for me. I learned more about myself and my illness while in there than I ever did in the community. And I used the resources available to me to help others and live comfortably. Truly a life changing experience.
Leon Canty
Kevin’s story:
I would say that at the time I would not have voluntarily entered into treatment, even while on COT, I still did not believe I needed to take medication or stay in treatment facilities that were open. I would just run away due to my impulsiveness. I experienced homelessness, arrest for sleeping in an apartment complex recreation area, and was generally scared all of the time. I felt people were trying to control my mind and had delusions about people and the environment. Eventually I ended up in a situation that could have gotten me killed, I broke into a apartment to stop the voices that were tormenting me through the walls.
Being in ASH helped me because I was away from the chaos for a long enough time, so I was able to think clearly. It was good to live in an environment where I could spend money at the bank, go to the café or store, do artwork in the studio, work part time and have a girlfriend. It was then I was able to realize what life could be like if I just took my medication and stayed off illegal drugs. All of the staff were very supportive and encouraged me to keep up the good behaviors, so I would not have to return to a locked down Level 1 hospital. I have not been in the hospital for four years, that is an all-time record for me. Since my release in 2015, I was able to repair damaged relationships with my siblings once I was stable and now have a good life. I hope everyone has the same opportunity as I had to recover in a safe place, so they can learn how to take care of themselves and learn to live again. I feel I was given a new chance at life, I am blessed.
Kevin
Jill’s story
One day several years ago a therapist escorted me to the ER for a mental health evaluation. With my refusal for treatment and promise that I was no longer suicidal, I was released. But my delusional thinking had convinced me that I was to die by suicide on that day. I wanted nothing to stand in the way. So, when I left the ER, I attempted to take my life. Three days later, I woke up handcuffed to a hospital bed. I was angry to still be alive. I was admitted to a psychiatric unit without my consent.
I was forced into treatment in a locked unit. It was not just the 72-hour hold, or until my medications were stable, but it was long enough for me to receive and begin treatment. Long enough for the doctors to really see what was going on. Long enough for me to be clear enough to participate in my own recovery. Most important is that today I can share this incident, because they protected me from myself, against my then “Better Judgement”.
I am now a small business owner.
Forced treatment saved my life!
Jill
Jan’s family story:
For the past two years our daughter was living homeless on the streets of downtown Phoenix. She was in and out of psychiatric hospitals and arrested on numerous occasions due to acts consistent with mental illness and substance abuse. Her stay in psychiatric hospitals had been at the most 7 days but most of the time 3-4 days. Once she was held over night and then released to the streets again to repeat the cycle of behaviors that had caused her to be picked up in the first place. There was almost a weekly “event”. She refused treatment of any kind and refused to live with us where she would have been safe and been taken to counseling, doctors, and therapy. Police officers often told she needed mental health treatment. We had been told over and over that there was nothing we could do until she said something or did something that was a threat to herself or others and that she needed to hit bottom. However, the bottom is often death for the individual or others.
It became very clear to us that she was going to die on the street if we did not do something other than what we had tried before. She was being assaulted on the street repeatedly and was refusing medical or dental help when offered. Police often found her face down in warehouse lots or in makeshift box houses.
It took us acquiring a lawyer and learning about PAD (persistently and acutely disabled diagnosis) in order to start the process of getting her in a position to be helped. We also were given guardianship. For the first time, she was held at the psychiatric hospital long enough to not only stabilize, but to also be given the correct medication. She was there for about a month.
For the first time in many years, she is living with us and she is emotionally stable. She has continued her meds and is cooperative and pleasant to be with. She has rejoined our family and is trying to pursue employment.
Forced treatment saved her life. It has never been our intent for her to be locked up forever or longer than necessary. Without getting the proper psychiatric care, she was getting locked up anyway in the jails where her mental health needs were not being addressed, but exacerbated Often, she was put in solitary confinement.
I hope that changes will be made so that the mentally ill will be treated with dignity and provided the help that would most benefit their recovery. Long term, secure care is often needed in order to save their lives and provide them the time to be properly diagnosed and recover.
Jan
Eric’s family story:
If it were not for involuntary court ordered treatment, I believe my son would not be alive or minimally incarcerated today. However, this is a happy story, because I was able to push through all the barriers that were stopping me from getting him the help he desperately needed and deserved.
Understandably, not everyone has someone in their life that is willing or able to do what it takes to push through the bureaucracy to get the treatment that their loved one deserves.
There are laws on the books that allow for involuntary treatment for those suffering with mental illness, in most states. However, in 13 states, including Arizona, if someone is presenting with the signs of mental illness and also suffer from addiction, the doctors have got to decide if it is the drugs that is causing the delusions or the mental illness within the first 24 hours of being held.
There is no legal way to proceed with court ordered treatment for someone who is suffering with substance abuse disorders, in Arizona.
My son is far from this man that he had become when he was not properly medicated. He is almost the complete opposite, as a matter of fact. He had been a top selling waiter in fine dining restaurants for many years and a very kind soul. He had a mental breakdown and I needed to help him and I couldn’t.
Even though he was presenting with extreme manic grandiose bi-polar symptoms and posting disturbingly violent comments on the Internet, my son was aware enough to share the keywords that the medical professionals needed to hear: “I am not a danger to myself or to others (DTS/DTO) .”
Urgent Psychiatric Care Center also knew that my son had a previous history of substance abuse. Because of this history, the social worker told me that he would be released without treatment or further observation. I was astounded and a bit hysterical, because I was so frightened for my son’s life and they would not help me help him.
What was also maddening is that when I asked the doctors and social workers to look at my son’s internet posts, they refused to do so, saying that it is considered hearsay, because they can’t prove that it was him posting. They also said that they were not allowed to look at social media posts and signed documents that restricted their viewing of their patients posts due to some HIPAA laws. It is mind boggling, in this day and age, that our first line of defense, the psychiatric units and social workers are not allowed to utilize social media to help diagnose serious mental illness issues.
In my opinion, the medical providers should be our first line of defense (red flag watchers) for protection to the community and first line of offense and protection of that person that is suffering from mental illness and/or substance abuse disorders. These people need treatment, not prison!!
It took me four handwritten 6-8 page petitions to get my son, Eric the help he needed Each time, the police had to go pick him up, which is frightening in itself and each time the medical professionals/system would release my son back on to the streets.
It was about 1.5 weeks’ time, many phone calls, emails and faxes in order to get my son admitted for treatment. It was not until I contacted my Congressman’s office, did I get my son admitted into the Urgent Psychiatric Care Center for treatment.
When you don’t have guardianship and you are a parent of an unmarried adult child, it is even harder to get help because of the overly restrictive HIPPA laws. Sure, if your loved one is sane and able, they can sign papers giving you the right to help, but even that is minimal.
I had all 3 Powers of Attorney, which included mental health Power of Attorney to help get my son the treatment he needed, involuntarily, and I could not get him treatment. I learned the hard way that the psychiatrist would not deem him “incapacitated,” so my Powers of Attorney were useless when I really needed them.
My son, Eric, did not want treatment. He did not think he needed it. He had no idea what was happening to him and he was in complete denial that he had any problem at all. The doctors chose not to help him get treatment for whatever no good reason they could or had to come up with.
It was horrible, seeing my child, even at age 30, fall away from me and all my efforts to get him back to safety and sanity was being turned away. In my opinion, if anyone thinks that it is easy to get help for those who want it, either voluntarily or involuntarily, think again.
We need a system in place that allows for involuntary treatment to occur with much more ease than it does today. We have an epidemic across America with approximately 200 people every single day dying with issues related to mental illness and substance abuse disorders.
I’m proposing we in Arizona bring into legislations such as Ricky’s Law in Washington state. https://www.wsha.org/articles/new-requirements-hb1713-rickys-law/
Fortunately, and with much perseverance, after 8 months of in-patient and 3 months of out-patient treatment, my son, Eric is doing better than ever because of the Involuntary Court Ordered Treatment that I was finally able to get for my son.
I am one of the lucky ones. He is still alive, healthy and his mind is stabilized again.
There are no more delusions or voices, he quit smoking, he is looking to go back to school to finish his degree and is committed to sobriety… because of involuntary court-ordered treatment.
Eric, over time, has gained the insight to value his freedom and sobriety and understand his mental illness more than I’ve ever seen before and it has been a long time…15 years. This Involuntary Treatment program is what seems to be working better than everything else we have tried.
When I asked Eric about this article and how he felt about involuntary court ordered treatment, he said at first, he felt like he was backed into a corner. It was hard to accept that he was ill. He also believes without the ordered treatment he would not have sought treatment on his own and certainly not be doing as well as he is today.
In Eric’s words he “now has hope he can become the man he is capable of being. “
Involuntary Treatment works. With more funding for facilities and streamlining these judicial and medical processes, loosening up the HIPAA laws to common sense laws, those suffering with mental illness and substance abuse disorders will be much better off than if they we do nothing at all and so will our society. We will save lives…lots and lots of lives and many have, can and will become healthy contributors to society.
Gail
Dick’s family story:
My son has schizo-affective disorder. He sometimes neglects his medication when his illness interferes with his comprehending the need for medication. He places himself in harm’s way without his meds. So, his family, clinical team and psychiatrist have asked judges to place him on court ordered treatment (“COT”), a legal and enforceable obligation to allow monthly injections of anti-psychotic medication.
These injections can ameliorate his symptoms (voices, delusions, etc.) to varying degrees depending on the culture of his living arrangement. For many years he has lived in various group living and treatment facilities, most of which have been “program-centered”, i.e. the patient must adhere to strict program protocols or be ejected, which can result in living in the streets, “halfway houses” or even jail (these places have been part of his lived experience). Persons whose mental illness is chronic often cannot adhere to such protocols due to the severity of their illness. COT loses much of its value in a “program-centered” culture or in the streets or in jail.
He now lives in a group home operated by an agency with a “person-centered” culture (all agencies will claim to be “person-centered”, but most are not). This agency uses program protocols as “guidelines” rather than strict rules, tailors treatment to the needs of the individual and does not eject patients for non-adherence to rules. COT and other treatment elements are much more effective in a “person-centered” living arrangement operated by an agency with an explicitly “person-centered” culture, where such culture is a reality rather than a slogan.
The Association for the Chronically Mentally Ill (“ACMI”) is helping to develop “court ordered places” where chronically afflicted patients can receive long-term care, tailored to their individual and varying needs, as an alternative to the streets or jails – to fill a glaring gap in our “continuum of care”. Meanwhile, ACMI can help families identify agencies with “person-centered” cultures most helpful to their loved ones with chronic mental illness.
Dick Dunseath, Board member Association for the Chronically Mentally Ill
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