Last week, I explained why I believe the “dangerousness” criteria is an impediment to getting people the help that they need. One reason why civil rights activists pushed hard in the 1970s to get “dangerousness” established was because forcing someone into a state mental hospital was a draconion move. Being committed was often a de facto life prison sentence. Barbaric treatments, such as forced lobotomies, destroyed lives.
What happens today if someone is forcibly committed?
In Virginia, on average, you will spend five days or less in a locked mental ward. Your “treatment” will be medication and, if you are willing, therapy in groups where the topic will center almost exclusively on the importance of taking medication. After your five days end, you will be discharged. If you are fortunate, you will be linked to community services. But there’s a good chance that you will be released without any serious follow up.
In short, your life will have been disrupted — not only by your illness — but by the state. Yet, little will be done to actually help you recover from your disorder or help you better handle your symptoms.
This is not meaningful treatment. It explains why some critics are so adamant about clinging to the “dangerousness” criteria. Deep down, they do not believe involuntary commitments benefit anyone.
In 1959, Dr. Morton Birnbaum was studying public policy and mental illness at Harvard University in a post-doctorate program when he hit upon an idea. His proposal later became known as the “right to treatment” argument. Put simply, Dr. Birnbaum argued that if the state decided to deprive a citizen of his liberty, the state was then obligated by the U.S. Constitution to provide that individual with real and effective treatment. 
I interviewed Dr. Birnbaum for my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, and he told me that his goal had been to force state legislatures to provide meaningful services to patients in mental hospitals. Unfortunately, the civil rights lawyers – who initially teamed-up with Birnbaum and then took over the legal cases that Birnbaum [who was both an attorney and medical doctor] had filed — had a different agenda. They wanted to close down all state hospitals.
Dr. Birnbaum eventually broke away from these legal activists who went on to play a key role in the deinstitutionalization movement.
I believe that the best way to rid ourselves of the ill-conceived “dangerousness” criteria, is by actually offering meaningful help to people who need it. If we accomplished that in our communities, the number of forced commitments would drop and the commitment process would be seen more as a gateway to recovery than a punishment.
What we need is a national, legal standard that would define meaningful treatment.
Let me give you an illustration. Before I wrote CRAZY, I spent a considerable amount of my career writing about jails and prisons. I was a reporter in Tulsa, Oklahoma, in the 1970s when a federal judge took control of the state’s poorly funded prisons and forced the state legislature to spend tax dollars to improve living conditions in them. I also wrote about class actions lawsuits that activists filed on behalf of inmates. Over time, a national standard was adopted. Prisoners won the right to attend religious services, live in a minimum amount of square feet, have access to medical and dental care, eat well balanced meals and regularly shower and exercise.
The civil rights movement in mental health that happened in the 1970s and 1980s was geared — not at winning patients the right to better treatment — but in protecting them from being forced to accept any treatment. At that time, that may have seemed sensible. Is it now?
Why, I wonder, can’t Dr. Birnbaum’s “right to treatment” theory be used to guarantee specific rights to anyone who is involuntarily committed? Why is there no national standard that spells out what services an ill person MUST be provided?
I’m not only talking about access to medications. I’m talking about requiring states to provide evidence based practices, such as excellent case management, access to assertive community treatment teams, Housing First opportunities, peer-to-peer support, transportation and other wrap-around services.
Since writing CRAZY, I have seen dozens of successful recovery programs and I have come to believe that most people who show the symptoms of a serious mental disorder can get better — especially when they get meaningful treatment. Is there a way that we can use Dr. Birnbaum’s “right to treatment” claim to force states to provide the best — not minimal – services to persons who are committed? Can’t we argue that to do anything less is to deny that patient’s legal right to treatment?
What I am proposing it not a new idea. In fact, it is what Dr. Birnbaum’s hoped would happen decades ago when he first coined the term. It’s about time we listened to him.
What do you think? What sort of national standard would you envision?
About the author:
Just a few days ago our NAMI affiliate received a voice mail from a woman, who was looking for help for her entire family, especially her husband. When that call was returned this woman was outside the house where her husband was living waiting for someone to come and pick him up as he had just shot himself. He had been Baker Acted and relased three days prior with what kind of follow up services I do not know. He had been struggling with Substanc abuse and mental health issues for years she stated, had even attempted three times to take her life. To make matters worse, together they have a son who was released from the service with serious PTSD and was wondering around walking in traffic putting himself in harms way now she worries about his will to live. The police picked him up to take him to the VA and he lied saying he had an appointment the next morning so they let him go. I emphatically agree, this critieria of having to be a danger to oneself or someone else is an insane law. People deserve care long before they deteroiate to that level. I am so with you on this one Mr.Earley!!
To me and my family, “meaningful treatment” would be integrated and integrative wrap-around medical, social, and emotional care. The treatment would not begin and end with psychiatric medications randomly thrown at a person. Medications may be a good start, but it can NOT be the whole treatment.
Here is an example. One of my children with “schizoaffective” began to get paranoid, agitated and lose insight. We were looking at her entire treatment and years of stability unraveling. We almost took her to the hospital (psych, of course). Had we done so, they would have given her more antipsychotic. Luckily her GP immediately knew the problem. It was the asthma medication her allergist had put her on.
And both her and her sister with bipolar are now well, but only by implementing integrative care (Integrative means MEDICAL and emotional and nutritional care) – DBT, diet changes, supplements, hormones) – something which flies in the face of a medical industry led by the iron fist of big pharma.
My family WANTS to be able to be treated if we start going “crazy” and lose insight…. but we want APPROPRIATE care. There should be no difference between “medical” and “psychiatric.”
I wonder how we can achieve meaningful minimum standards of care for mental illness when we are smack dab in the middle of a national debate about whether physical health care is a privilege or a right. Our current 72-hour involuntary commitment holds seem to mirror the minimum of care hospitals are required to give the seriously physically injured. The broader question is, in my opinion, when will we finally see that ALL medical care is a right?
First: Congratulations, Pete, you actually wrote something that I mostly agree with. ;)
—
On a serious note, however, I do agree that the states need to do more and I have been saying this for as long as I have been involved in advocacy. We need community services that integrate psychiatric treatment (medication and supportive therapy), non-psychiatric medical treatment, vocational rehabilitation, case workers and other, more experimental forms of therapy. These services would be grounded in ideas of community psychiatry, which stresses a patient’s ability to function and integrate into the community just as much — if not more than — just the symptoms they are experiencing. These programs would be government funded so that they could provide free or sliding scale services (some already are. The funding cones from that supposedly awful organization Torrey wants to shut down; but I won’t get into that one right now…). AOT will not be included as it is in direct violation of the 14th Amendment Equal Protection Clause and, I would argue, in contradiction of O’Conner v Donaldson (“Mere public intolerance or animosity cannot constitutionally justify the deprivation of a person’s physical liberty.” Being forced to take medication could be argued to be taking away a physical liberty).
As for involuntary hospitalization, I would also agree that things need to be changed — both for involuntary and voluntary patients The services offered in the above community center need to be offered (especially experimental therapies — in one study at a long term facility, horse therapy was so effective that many of the patients were discharged. Citation can be provided if asked), staff need to actually be trained (instead of being a bunch of arrogant twenty something college kids), restrain and seclusion need to only be used in emergencies (don’t believe them when they say that is true now), patient-focused (ie, don’t believe everything the staff and hospital says) evaluations need to be done to ensure quality, the hospital needs to be in close communication with community services, they need to offer step-down options, the goal should be to return the patient to the community — preferably, in an Intense Outpatient setting — as quickly as possible, among others. Involuntary hospitalization can be a traumatic, disruptive and stressful event for some and that needs to be recognized.
—
Now, on to the disagreements:
“This is not meaningful treatment. It explains why some critics are so adamant about clinging to the “dangerousness” criteria. Deep down, they do not believe involuntary commitments benefit anyone. ”
No, it does not explain it. Pete, I respect you; but not make assumptions about the beliefs of those you disagree with. Though one of hospitalizations was useless and traumatic, being inpatient — the other times — was therapeutic, supportive and saved my life. Though I have complaints about the hospital I was in, it was — overall — a good facility. It can be of benefit in the short term. If used in the long term without good cause (ie, if you release a patient, he/she will kill him/herself or others), however, it is harmful and slows recovery. Though I have no study to cite — if one doesn’t come out from now and until my older years, I may just do it — but, in my experience with fellow patients who had been there for months (one, a year+), it was obvious they would have a hard time adjusting to life outside the hospital. Many of them had been inpatient long-term before (Medicaid can often pay for quite a bit), in fact, and expressed this. If the goal is community integration, hospitalization must stay as short as is safe, not as short as is comfortable to the patient’s family.
In addition, changing the criteria would be unconstitutional unless you changed it for every illness.
“The civil rights movement in mental health that happened in the 1970s and 1980s was geared — not at winning patients the right to better treatment — but in protecting them from being forced to accept any treatment. At that time, that may have seemed sensible. Is it now?”
Yes, it is sensible. Peoples’ rights don’t change. Abuse still happens.
I would, however, be open, for example, with tweaking with the 72 hour time span. That is something I would be willing to consider.
Once again, if you want the dangerousness part changed, provide a legal argument.
—-
“Since writing CRAZY, I have seen dozens of successful recovery programs and I have come to believe that most people who show the symptoms of a serious mental disorder can get better — especially when they get meaningful treatment. Is there a way that we can use Dr. Birnbaum’s “right to treatment” claim to force states to provide the best — not minimal – services to persons who are committed? Can’t we argue that to do anything less is to deny that patient’s legal right to treatment?”
Certainly, I will consult the Constitution and court cases and see if I can come up with something.
(forget to add last sentence) *There must be an argument out there somewhere.
A “Right to Treatment” idea is good in theory. But what happened is that states found they had to offer treatment to those committed, so they simply stopped committing. The jails picked up the slack and then because it was criminal issue, there was no right to treatment. Not sure where this goes.
An alternative in my opinion is to require anyone who is ajudicated to “lack capacity” to make own treatment decision to have someone assigned to make the decision for/with them. This is what we do for people with Alzheimers. If someone is so psychotic they don’t even know they are ill (or think they are Moses), then someone should be making their treatment decisions in their stead. Note, that the decision might be to not treat or might be to treat. But someone with decisionmaking capacity should be making that decision and the decision should be based on what is in the patient’s best interest.
Great article.
So why do you support AOT? Going by New York State standards, it does not require someone lack capacity. It simply requires that they refuse treatment that, in a treating professional’s opinion, they would benefit from. This is a standard we apply to no other illness, despite the fact it could apply.
Unless you are going to argue that refusing medication is the equivalent of lacking capacity — that is absurd and also not a standard we apply to any other illness.
In case you want to reply to it, I am going to repost the example of the Diabetic from Pete’s last blog:
“A was diagnosed with Type 1 Diabetes at a young age. For most of his
life, his parents have made sure he took his medication and participated
in treatment. Though it kept the Diabetes at bay, it also came with
unpleasant side effects that A did not appreciate. He wanted to treat it
with ‘alternative medicine”, which he viewed as having less side
effects. In addition, after awhile of not suffering from symptoms, he
figured he must not have it that bad, anyways — maybe the doctors even
made a mistake! As a consequence of all of this, on his 18th Birthday, A
stopped taking his medication and sought out an alternative
practitioner. His parents were horrified.
It did not take long
for A’s condition to worsen. His blood sugar spiked, leaving him
exhausted, his vision blurry, his feet tingling, unable to go long
without needing to use the bathroom, he lost a significant amount of
weight and he was constantly irritable and on edge. As he was feeling so
sick, he missed quite a few days of class (he was in college pursuing
his degree in another state; living in dorms) and his grades plummeted.
Around this time, he also fell into a Diabetic Coma and, after being
found half-dead by a stranger, was hospitalized. Upon discharge, he
started taking his medication again; but, after a return of side
effects, he quickly went off them. The cycle seemed bound to repeat
itself.
His parents wanted to force him to take his medication
and, if he started getting worse again, force him into the hospital
before the coma occurred; however, as he was over the age of 18, there
was nothing they could do. Should they be allowed to force him?
If
you support AOT or a more flexible commitment for mental illness, then,
by the reasoning many AOT-supporters put out, you should also support
their right to force him to take medication — either inpatient or
outpatient. If you do not support forcing this man into treatment but
support forced treatment for mental illness, why? Why do you support
less rights for the mentally ill or, depending on your viewpoint, why
would you only want to take away the “barriers of treatment” for the
mentally ill? If you do support forced treatment for A, why are you not
advocating for it? Why don’t you fight for an AOT that is applicable to
all illnesses?
(and noncomplaince is an issue in diabetes: http :
// jama.ama-assn . org / content / 284 / 13 / 1709 . full – remove
spaces or Google The Problem With Compliance in Diabetes, Medical
Student JAMA)
*that I posted on Pete’s last blob
When a person is about to take their own life or purposefully attempt to destroy it without having the capability of informed consent, then perhaps the person should be forced into treatment. Wouldn’t it depend on what that person’s belief system was BEFORE the illness striked? Under age of 18 is a tricky issue as. I believe suicide isn’t just what you do to yourself; it’s also what you don’t do to yourself. It’s a difficult call. I would absolutely try and save my loved one (child) from killing themselves. How could I not try? As a mother, it would be impossible to sit there and let your child die when you know you could save them.
Start by focusing on this positively outrageous patriarchal mass hysteria and obsession with “being controlled” and “loosing personal freedom.” This moronic hysteria of “give me liberty or give me death” mentality should be looked at first because it is blinding groups like the civil liberties union, lawmakers and anti-psychiatry groups — (which tend to have high ratios of men in them) — to the truth about mental illness and patient’s rights. I guarantee that not a single person in any of these three categories/groups do not and have never had to act as day-to-day caretakers to the mentally ill because they wouldn’t be able to have their jobs and be caretakers at the same time. Perhaps we should drop off our mentally ill loved ones at their doorsteps so they can care for them since they think they know what’s best for our loved ones. If I knew I would have a mental illness that would transform me into someone who could be living in a dumpster, starving and being victim to violence, abuse and even death and not able to fulfill my life goals of career, family and activism, I would most definitely want to be treated and even forced into a hospital to regain my sanity/brain functioning and life. I sympathize with the issue of losing control over one’s body and life. The closest I’ve come to “losing control over my own body and life” was when I went to give birth in a hospital. I was given drugs I didn’t want; I was told what to do and when to do it and what I wasn’t allowed to do; and that I couldn’t leave the hospital until I had passed a specific test. Yes — it’s a downer to have all these things done to me against my wishes; and some were downright physically painful, but I knew it was for a higher good — for my baby’s needs. I am not saying that having a baby in a hospital is the same as being involuntary committed to a hospital and given drugs against your will. But how can a brain that is functioning on the level of a 1 yr old — (not physically or mentally capable of taking care of oneself) — be able to make an informed decision about what they do and don’t want to do? How can the malfunctioning brain make an informed decision about the refusal of medical treatment if it cannot leagally sign a contract?
Why is mental illness treated as “separate and not equal” to other diseases under the law? Isn’t this in itself a violation of civil rights because one citizen is being treated unequally to another citizen simply because of the type of disease he has? Isn’t “separate but unequal” ultimately unfair? Why is there a burden of proof for brain diseases like bi-polar and schizophrenia in order to get treatment, but not for Alzheimer’s or Parkinson’s or MS or Lou Gherig’s Disease? Is it because treatment consists of involuntary (forced) hospitalization? Why do we allow Alzheimers patient be “forced” into hospitalization while a bi-polar patient isn’t “forced” into treatment if they are not a danger to self/others? Is it simply because of each patient’s “perception” and “resistence” capabilities? Just because the bi-polar patient sees forced treatment as a threat or abuse, is it really abuse? Why does certain brain diseases have the burden placed on the patient’s family’s ability to “be psychic.” The law requires family members to be able to “predict” the dangerous/not dangerous actions of a mentally ill person in order to gain treatment (forced hospitalization), which is often but not always, the only treatment available?
The best criteria and laws would be based on a treating doctor and family members in terms of “what is in the best interest of the patient to recover to their best version of themselves pre-disease condition.” Unless someone signs a contract before their illness starts, stating: “Do not force me into treatment and allow me to live a life of starvation, filth, danger, abuse, violence, physical pain/agony, mental depression, horrific hallucinations, unbearable delusions, and the capability of causing mortal injury to others, etc., ” then why would we assume that the patient wouldn’t want to be forced into treatment to regain full ability to function and assume a stable, safe life?