Mental health advocate Lembi Buchanan of Victoria, B.C. released a new report called Emergence of the Recovery Movement: Are medications taking a back seat to recovery? She points out that the popular recovery model threatens to take centre stage at the expense of the urgent needs of the people diagnosed with severe and persistent mental illnesses such as schizophrenia and bipolar disorder. What sounds like a logical approach to the treatment of mental illness, recovery, is actually regressive because it does not focus on the evidence-based neuroscience of these brain disorders.
The report states that:
"Rather than embracing the advances in neuroscience research along with new and innovative medications with fewer adverse side effects, the recovery model reflects many of the antipsychiatry sentiments of the 1960s that questioned the fundamental assumptions and practices of psychiatry as well as the therapeutic benefit of psychiatric medications.
Recovery proponents support a consumer-driven, psychosocial holistic model that promotes hope, self-determination, empowerment, respect, responsibility and spiritual healing to enable people living with mental health problems and illnesses to lead meaningful and productive lives whether or not they are symptom-free. They dismiss the essential role of medications for individuals who are severely disabled by their illness and incapable of managing their own recovery."
They reject the emphasis of the biomedical model of mental illness. Instead, they believe the patient is the expert on treatment rather than the doctor and that there is no need for clinical evaluation or evidence-based treatment. This model does not accommodate the needs of individuals with severe mental illness (3 per cent of the population) who may lack insight into their illness and are unable to make appropriate treatment choices.
Individuals with untreated mental illness are susceptible to suicide, homelessness, incarceration, and, in some cases, extreme violence. Often they require hospital care and treatment to prevent further deterioration of their condition and long-term disability. Several Canadian jurisdictions have amended their mental health legislation in recent years using a more expansive interpretation of danger that encompasses the risk of serious mental, emotional, social or even financial harm to justify involuntary commitment and treatment.
BLOG CONTINUES AFTER SLIDESHOW
Nevertheless, the Mental Health and the Law Advisory Committee of the Mental Health Commission of Canada believes that involuntary hospitalization and treatment are violations of human rights. The recommendations of its recent report, Equality, Dignity, and Inclusion: Legislation that enhances human rights for people living with mental illness will make it more difficult to hospitalize and treat the people who need it most.
LAC's objective is to reform mental health legislation across the country to limit involuntary committal and treatment only as a method of last resort for individuals that meet the strict dangerousness criteria. Such an amendment to our mental health legislation will harm the severely mentally ill who are not only dangerous to themselves or others but also lack the capacity to make appropriate treatment choices by denying them the right to treatment and the right to be well.
We clearly need, for a small subset of people who are incapable of recognizing that they are ill and who might deteriorate and/or become violent, a system with proper checks and balances, to ensure that they receive appropriate treatment.
The value of appropriate medication for schizophrenia is well accepted in science-based medicine. A recent report out of Johns Hopkins found that those with schizophrenia who took their medication had a 25 per cent reduced risk of death than those who did not. Study author, Bernadette A. Cullen said, "If your illness is under control, you can do a lot more."
And while many do not want to recognize this fact because they believe it will increase stigma, it is well known that a small proportion of people with untreated psychoses will commit violent acts which are uncharacteristic for them when not psychotic. Mother Jones Magazine recently completed an analysis of 61 cases of mass shootings in the U.S. in the past 30 years. They found that "Acute paranoia, delusions, and depression were rampant among them" and that "at least 38 of them displayed signs of mental health problems prior to the killings."
On a personal level, Buchanan told me in an email that she and her husband Jim will be celebrating their 40th wedding anniversary thanks to the lithium he takes for his bipolar disorder. In New York in 1973, Jim climbed to the top of St. Patrick's Cathedral in a psychotic state to wait for a helicopter to take him to God. He began taking lithium in a drug trial and still takes it to this day along with other psychiatric medications. Jim is well aware that he would not be alive today if it hadn't been for involuntary hospitalization and treatment on occasions when he has had psychotic episodes.
Early treatment enabled Jim to participate in his recovery as envisioned by the Mental Health Commission. "We are able to celebrate 40 years together (no mean feat these days under any circumstances), along with two fabulous kids and five remarkable grandchildren."
Would that accomplishment be replicated if the LAC gets its way?
Follow Marvin Ross on Twitter: www.twitter.com/dysdads
1. I'm glad that he recognizes the need, at times, for involuntary treatment.
Dr. R., please comment on anosognosia and the research demonstrating the neurobiological basis for the lack of insight common in many people experiencing psychosis.
http://www.treatmentadvocacycenter.org/about-us/our-reports-and-studies/2143
2. Most people I know with schizophrenia who've gotten much better have needed this at some point. The Recovery Movement has succeeded in making it more difficult for people to get this treatment that forms the foundation for recovery.
3. I don't know anyone who thinks medications are all that is needed for recovery from psychotic illnesses.
4. I see people associated with the Recovery Movement persuading people without insight that they have a 'label' not a 'brain disorder' and then leading them to stop meds. The results are disastrous.
5. I want housing for all homeless people. I know many people who have provided great housing for family members with psychotic disorders. When people have stopped meds, the housing falls apart.
6. Dr. R., are you concerned about the rampant and unjustified parent blaming within the Recovery Movement? This undermines the recovery of many people living with psychotic illnesses.
1. Check facts before you push the “post comment” button. His name is Ragins, not Raglins. Checking facts in general is a great habit to practice. It also might make your writing less misleading.
2. Get at least some of your information from sources more credible than the Treatment Advocacy Center. They are a lobbying group for laws that promote coercive drugging of the psychiatrically labeled. Their info is biased to promote their agenda.
3. The “research” you cite about anosognosia comes from the Treatment Advocacy Center. A reputable psychiatrist explains how the notion of “anosognosia” a.k.a. “lack of insight” has illegitimately crept into the mental health lexicon. http://www.madinamerica.com/2012/08/anosognosia-how-conjecture-becomes-medical-fact/ Like the discredited theory of “chemical imbalance,” it deserves to be trashed.
4. Drugs do not form the “foundation” for recovery no matter how often you and the pharmaceutical PR machine repeat that propaganda.
5. Experiences that get labeled with DSM diagnoses are not “brain” disorders. The DSM is a manual of “MENTAL DISORDERS.” If brain pathology was at issue, then NEUROLOGISTS would be treating the problems.
6. I am a parent. I have been involved with the “recovery” movement since 2010. I have not experienced “rampant parent blaming.” What I have experienced is a lot of compassionate people who care about truth and hope.
2. Involuntary psychiatric treatment saved my daughter's life. She lives with schizophrenia. You and many like you apparently believe that the heartbreaking trauma that my daughter experienced for years while her schizophrenia was untreated is totally OK. I do not.
3. I have seen you attack anosognosia before. It is laughable that you use a highly biased source to back up your faulty assertion. Undoubtedly you have never experienced anosognosia yourself. I encounter this opinion from many of the family members I know personally. When people have not had first hand experience of anosognosia, it is extremely hard for them to comprehend it or accept that someone could be so sick that they have no awareness of their own illness.
4. Anti psychotic drugs have been the absolute foundation of my daughter's recovery. If she had not been forced into treatment there is absolutely no doubt in my mind she would have been killed while she was sleeping on the streets. Instead, she is now in her own apartment and working on her recovery while taking her anti psychotic meds.
5 My daughter's schizophrenia is a brain disorder.
6. I am a parent of a young woman who lives with severe schizophrenia. I spend a great deal of time talking to her about hope and recovery, which I know would not happen without her medication.
Point 3. At least as far back as 2002, and continuing through 2005, I was certainly led to believe by the doctors who treated my son that meds were the cornerstone of recovery and they paid lip service to other interventions. In many cases the doctors tried to actively discourage any new ideas I offered them. If they are singing a different tune now, it is because of the recovery movement. Anybody entering the hospital for the first time will not be given information about schizophrenia that deviates from the meds only approach (perhaps they throw in CBT to satisfy the critics). It's easy in the early stages to believe that meds are the only treatment.
Our present system is not "all bad" nor are the people working in it evil and unhelpful. Sometimes recovery does result from our current efforts. Everything we're doing doesn't need to be changed. (Sometimes recovery results from placebo too.) That doesn't mean we should stop trying to improve things. We all deserve a better approach and system to work with. The recovery movement has developed better approaches and continues to learn and implement new strategies.
The recovery movement is actively fighting for positive reforms. Please join us.
Mark Ragins, MD
Medical Director, MHALA Village
www.mhavillage.org
Mark RAgins, MD
I went to a judge and got a court order and she finally got admitted and put on the anti-psychotic drugs she so very desperately needed. And she has continued to stabilize since that time.
You say that involuntary treatment is a "violation of human rights, usually highly traumatizing, and destructive of relationships with the mental health system overall". And yet evidence based science tells us that the earlier the person can be treated with anti-psychotics, the better their chances for recovery.
Are you OK with the massive and permanent losses my daughter suffered due to the fact that she has extreme lack of insight and the local hospital saw fit to not provide the involuntary medical treatment she so very desperately needed? That is not a rhetorical question by the way. I would sincerely like an answer.
2) After all of that and more is tried and failed and if there is acute danger (and I assume there was since the judge granted your order), I'm "OK" with involuntary treatment even with it's massive downsides, if it's trauma sensitive and used to engage in voluntary recovery-based services before discharge,
3) What family services and supports were you offered to you?
BTW It's hard to distinguish between correlation and cause in early intervention studies. Many people who take a long time to engage in treatment have significant risk factors that impact their outcomes in additon to not taking meds. Many places are now using intensive psychosoical interventions with first break psychosis instead of jumping straight to meds to build relationships and coping skills and avoid antagonizing people. Also it's unclear whether meds themselves may have long term negative effects.
I hope, in addition to stabilizing, your daughter is now recovering.
Mark Ragins
Mark Ragins, MD
Mark Ragins MD
Medical Director MHALA Village
www.mhavillage.org
No approach to anything requires a 100% success to be implemented. At best pills help about 70-80% of the time and we don't urge stopping them because some people don't respond to them. Not everyone learns in school, some people can't read and some people can't see or hear TV. That doesn't mean schools, books, and TV shouldn't be widespread.
There are some people for whom the recovery model seems a bad idea - people who are repetitively seriously dangerous, predatory people, people with severe brain damage or mental incapacity, and people incapable of any human relationships. This is a very different group and a much smaller group than the group this article discusses - people who don't believe they have a biochemical illness, "lacking insight," and people who won't do what other people want them to do, "noncompliant". Those two sets of people are failures of our existing medical system, not the recovery model. I spend my life focusing on working with precisely those people (low insight and compliance) in a recovery program and we have very high success rates including reductions of over 70% in homelessness, jailings, and hospitalizations, increases in independent hosing, family reunification, and working along with very low dropout rates. Those people (low insight and compliance) are the main group of people who will benefit from more recovery based programs, not a reason not to use recovery.
Mark Ragins, MD
We could learn much from people who have been labeled with things like schizophrenia and bipolar, yet who have found ways to wellness. The “I Got Better” project is compiling an anthology of first-person narratives of just such hopeful stories. Here’s an example: http://igotbetter.org/videos/jgottstein The project explores the many ways to mental wellness, but a common first step toward healing seems to be REJECTING the unscientific labels (a.k.a. DSM diagnoses) and the pessimism and hopelessness they foster.
And there is no absolute 'evidence base' neuroscientifically speaking, it just depends on which camp you're in. The for or against it. Check out their research which uses the words 'seem to' and 'probably', it's not an exact science or one based on truth but on probability and conjecture.
Fortunately some of us have recovered, completely, from the schizo labels, by resisting the advice of psychiatrists and not listening to the people who write negatively about our chances of recovering. I recommend that people take the negative comments with a pinch of salt.
http://www.huffingtonpost.ca/susan-inman/mental-illness-medication_b_1516185.html
It's important to remember how much evidence there now is that lack of insight is neurobiologically based; why should people who don’t understand how ill they are consent to treatment?
http://www.treatmentadvocacycenter.org/about-us/our-reports-and-studies/2143
If we insist that very psychotic people should be 'free' to choose treatment, we are dooming them to be left in untreated psychosis. This is one of the many ways that the beliefs of the psychiatric-survivor movement harm people with the most severe illnesses, rather than help them actually recover. Many people like my daughter and her friends don't want to be left to deteriorate in an untreated psychosis in the case of a future relapse.
As with the notion of “chemical imbalance”, the term anosognosia has crept into the psychiatric lexicon. Its use confers a certain sophistication of understanding and knowledge that is not supported by the data.
Anosognosia: how conjecture becomes medical “fact”
Excerpt:
Readers on this site (MIA) have wondered how the notion of a “chemical imbalance” could have been accepted by so many when the research did not actually support the concept. A recent paper from the Treatment Advocacy Center that summarizes studies of anosognosia in psychosis gives some clue as to how this type of thinking becomes entrenched and accepted.
http://www.madinamerica.com/2012/08/anosognosia-how-conjecture-becomes-medical-fact/
http://chrysmuirheadblogs.blogspot.co.uk/2012/09/29-january-2012-navigating-system.html
I say that there needs to be choices for people in mental distress. Places of respite and safety where people can take time to come out of a psychosis. I say this as a mother of 3 sons who have also experienced psychotic episodes, in transition from youth to adulthood. They experienced traumatic treatment, as I did, and had to recover from both the treatment and the initial trauma.
Therefore, now aged 60, I am campaigning for choices, alternatives to hospitalised and an end to forced treatment. In 2008 I started up Peer Support Fife, to promote peer support, in Scotland, UK:
http://www.peersupportfife.org.uk/
And moved on to promoting user/survivor/carer participation and leadership in service design and delivery. Now I am an activist and campaigner, working with others to bring about psychiatric system improvement and change. A survivor activist. Enjoying life to the full.
F. Baudouin
My daughter lives with schizophrenia and I am a firm believer in recovery. My understanding of recovery is that my daughter will set goals that are meaningful to her, and suited to her own level of ability.
Just because I hold a hopeful attitude and speak about recovery with my daughter does not mean that I am not an advocate of involuntary psychiatric treatment. A few years ago I went to a judge and he granted a court order which led to my daughter finally being treated for her severe psychosis. Over a period of two years I watched my beloved bright daughter slowly and surely being destroyed by this terrible disease while the local hospital repeatedly refused to give her medical treatment due to the fact that she had severe lack of insight.
My daughter literally lost everything due to the fact that her schizophrenia was not treated. She lost jobs, schooling, friends, family members and eventually she ended up sleeping on the streets. And as far as I can tell the psychiatric survivor movement and the human rights lawyers are totally OK with this human tragedy.
My daughter's life was saved by involuntary psychiatric treatment and forced medication. I weep for the families who will lose their sons and daughter's to this terrible illness if laws are passed that make it impossible for their loved ones to get the medical treatment they so desperately need.
None of the above requires any government funding or doctors. The people that don't want any professional intervention can get help on their own leaving the public system for those folks who need meds & doctors.
I'm really troubled by Lembi Buchanan's report you cited. It's a throwback, a return to the kind of demonizing, dehumanizing rhetoric that leads to widespread institutionalization and abuse. Recovery-oriented care gets people engaged in a healing process and offers some hope, even with tough symptoms or side effects of medication. It is certainly more engaging than a coercive no-choice process. People get to learn what works, or at least learn to trust in another person's judgment. Yes, this does take more time.
The white paper Buchanan is worried about is a pretty dull analysis of what Canada needs to do to comply with the UN Convention on the Rights of Persons with Disabilities (CRPD), which Canada adopted in 2010. The convention requires that people in treatment be informed of their rights periodically, and have access to an impartial review of treatment decisions they object to. The white paper is about forms and paperwork, and provincial legislation that needs touching up. It looks harmless enough to me.
I realize that people need treatment right away when a crisis they are experiencing makes them unsafe. Yet I've never heard of a case where the timing of a third-party review prevented a person from receiving the care they needed.
There's a lot of compatibility between the medical model and the recovery model. Let's explore that. People are entitled to some choice and some hope. Maybe we can broker a peace.
--pk---
You seem to suggest that people in an extreme psychiatric crisis get treatment. While it is true that people who have even a small amount of insight can often be persuaded to accept medical treatment, it is the people who lack insight that really suffer because hospitals simply refuse to give involuntary treatment even when it is desperately needed.
This is such a frustrating problem.
I want people to get treatment when they need it. I expect people in hospitals, emergency services, court systems, and law enforcement to act in an accountable, ethical fashion to make this happen.
I have limited sympathy for people who very formalistically will say "this person has a permanent impairment" yet fail to recognize suffering and distress when it threatens to increase their caseload. Or who act dishonestly, claiming that a person who is unsafe does not meet admission criteria when the truth is there's just not enough space. This inflicts suffering and kills people.
Please continue with your advocacy to make things better. People need to have sufficient access to every level of care, from the most informal to the most secure.
--pk---