Category Archives: Recovery

Dwayne Johnson and Heroic Narratives

By Dr David Laing Dawson

Within the same time frame I was reading Marvin’s blog on the Mental Health Commission and the associated commentary, Dwayne Johnson’s story of depression popped up on multiple news sites. None of the sites gave much detail and I remain unsure if he suffered bouts of what we used to call “clinical depression”, and before that “endogenous depression” or if he simply suffered some difficult discouraging periods in life when his football career and a relationship ended.

In these brief news items Dwayne’s story is shaped as the narrative of an “heroic struggle”.

And I realized that most such stories are shaped and told in that form. It is a classic narrative form, and one we all want to hear.

Facing great odds, our hero, perhaps after learning some life lesson (humility, confession, love, trust, openness) battles his way through to success, health, and happiness. His weapons are will power, strength, hope, perseverance, and a little help from his friends.

It is the narrative form in the story of A Beautiful Mind’s John Nash. And it is the narrative form when the story is told about a victim of cancer.

The difference is that when we read the story and see the pictures of someone’s struggle with cancer, we know he or she has undergone one or many courses of radiation or chemotherapy, that he or she is still undergoing treatment.

The focus of the story may be on the courage and optimism of the patient, their loving  family, a special group of supportive friends, a cancer support group, or all that the patient is able to accomplish despite their illness – but we never lose sight of the fact of medical treatment for cancer.

It is good to bring mental illness out of the shadows. It is good to tell our stories. But we need to drop the euphemisms of mental health issues, and (a new one for me) mental health “situations”, and we need to include the fact of medical treatment for serious mental illness, because we don’t assume it as we do with cancer narratives. In fact, a very popular heroic struggle narrative is “I overcame my (illness, depression) without resorting to medication.”

This heroic struggle narrative has shaped the recovery movement; it has clearly influenced members of the mental health commission.

And who would bother watching a show, or reading a story with a tagline of: “A man develops depression, goes to his doctor; the doctor treats his depression and he gets better.”

This is not to denigrate the role of courage, optimism, hope, and support required to live with a chronic illness, or recover from an acute illness. But…

Update:

Another day, April 5 to be exact, and it seems it is OCD Day with several news items and videos appearing. Much is shared in these articles and videos, distinguishing crippling OCD symptoms from mild everyday forms of compulsions and obsessions. Psychological treatment is also explained, exposure and desensitization therapy. But not once, not once in the articles and videos I watched was it explained that there are medical pharmacological treatments that work with great success for about 90% of sufferers. Not once is this mentioned.

One of these medications has been around since the 1960’s, though at the time we didn’t know how effective it was for OCD and psychological/psychoanalytic thinking about the illness dominated.

I am not sure who or what is to blame for this. But for the psychologists who were interviewed to not mention this readily available medical treatment is akin to naturopaths not mentioning antibiotics when discussing the treatment of pneumonia.

Paradoxically, Jack Nicholson starred as a novelist with OCD in “As Good as it Gets” 20 years ago. At the end of the movie Nicholson’s character decides to be a better man and go back on his medication. Critics were not happy with that ending, and it did ruin the “heroic struggle” narrative. It was, as the third act of a story, very unsatisfying. “What? To quell his OCD all he had to do was take his medication?”  Well, yes.

 

Advertisements

It’s Not Recovery, It’s Remission or Positive Management

By Marvin Ross

Anytime I criticize the recovery concept in mental illness, I get push back. I’m not surprised but the notion that recovery empowers people and gives them hope does not make sense. What I was pointing out in an earlier post was this. If you can’t recover fully or improve significantly, then recovery suggests that you weren’t trying hard enough and you are a failure.

It is only in mental illness among all the chronic illnesses where recovery is talked about. The dictionary definition of recovery is this:

“the act or process of becoming healthy after an illness or injury : the act or process of recovering. : the act or process of returning to a normal state after a period of difficulty. : the return of something that has been lost, stolen, etc.”

People can recover from a bad cold or a broken bone but they cannot recover from a chronic illness regardless of what they do. Recovery is a term or concept that comes from addictions and is misapplied to mental illness. A recovered addict is someone who has stopped using addictive substances. Someone with a mental illness cannot suddenly stop being mentally ill. What they can do with the help of health professionals is to deal with the symptoms as best as can be accomplished and to reach a state of good management of the disease – a form of remission.

If you want to call that recovery, OK but it isn’t a true recovery. Whatever caused the illness in the first place, cells running amok as in cancer, immune systems attacking its own body as in autoimmune diseases, tangles and placque in the brain from Alzheimer’s, remains. Medical management has not progressed to the point where these conditions can be reversed. The best it can do is to help with the symptoms and to provide supports to make the life of the sufferer as good as it can be.

The concept of recovery does not take into account the variability of diseases. Symptoms are not always exactly the same for everyone nor are they of the same intensity. When someone is diagnosed with a chronic illness, they (and the family) get an explanation of it from their doctor. They are told what to expect and what the treatments are. Those treatments will include medications, education, and other relevant strategies.

This is where lived experience comes in. That is another stupid term in my opinion. Because each individual is different, their health care providers ask about their symptoms, severity and how various treatment modalities are working. The doctor knows the disease, the science, the treatments but only the ill individual knows how he or she is coping and what may or may not be working and the potential side effects. That is the lived experience they bring to the appointments and it goes for every malady.

The lived experience as part of the therapeutic alliance between health care providers and their patients has always existed. Lived experience reminds me of a panel I was asked to participate on for a “new innovation” – patient centred care. I did not endear myself to the hospital staff and doctors when I asked what was such a big deal. Central to hospitals and doctors is the patient. Without us, they have nothing so if patient centred care is such a big deal, where did the patient fit in before? It and lived experience are but fads and buzz words.

The proponents of lived experience then usually jump to the need and importance of  peer support as part of the therapeutic regimen. That’s fine as long as what it does is to provide a buddy with information, education and coping strategies. Most, if not all, chronic diseases have support organizations. The cancer society, arthritis, lupus, MS, you name it and all do that. But that peer support is not a substitute for the medical specialties.

When anyone is first diagnosed with a chronic condition, they are given some parameters. If you have type I diabetes, the parents (because it is from birth) will be told that it will be necessary for the individual to take insulin for their entire life and to be very careful about diet.

That insulin analogy is often used with schizophrenia. The person is told that they will likely have to take medication for the rest of their lives like an insulin dependent diabetic needs to take insulin. It might not be the best of analogies but it is used and it certainly makes the point. I suspect, but I don’t know for sure, that the much maligned idea that there is a chemical imbalance in the brain with mental illness was nothing more that an analogy to explain that which cannot be explained.

We all ask the cause even though there is never a good explanation. Why do I have inflammatory arthritis? It’s autoimmune but what does that really mean? My rheumatologist would probably shrug and say your immune system suddenly decided to attack your body. Why? No idea. How? No idea but take this and it may help reduce the inflammation (or not).

The patient or family asks why schizophrenia, bipolar, severe depression and the doc, at a loss, says there is a chemical imbalance in the brain. Well, maybe not but the brain is messed up and all that does is to give what sounds like a plausible explanation for the unwanted ailment.

The bottom line in all this is that when you do have a chronic illness, then you manage it as best as it can be managed so that you have as good a life as possible with the deficit. It’s not a cure and it’s not true recovery but it is the best that is available now. So, enough with this recovery talk. It is time to be realistic.

Further Reflections on the Misguided Concept of Recovery

By Marvin Ross

Last year, I wrote about what I called the unintended consequences of focusing on recovery in schizophrenia. I’ve also published an e-report called The Emergence of the Recovery Movement by Lembi Buchanan that explores the anti-psychiatry and anti-medication underpinnings of this movement.

In October, the New England Journal of Medicine published three articles by cardiologist Lisa Rosenbaum. The first is called Liberty versus Need — Our Struggle to Care for People with Serious Mental Illness which contains a section on recovery. The other two articles are listed and linked on the right hand side of that page. Toronto psychiatrist, Dr David Gratzer, brought them to my attention and then I discovered that my friends at Mad In America (MIA) detested the articles so, from both sources, I knew they would be good.

Comments by MIA on the article include:

“This is paternalistic rubbish”

“It is no wonder that people are turning against such white, wealthy elites, as exemplified by recent events such as Brexit and Trump’s election, when so many experts such as this (white, wealthy) psychiatrist think they can impose their view about who is right on common people and their families.”

“The arrogance is a notch higher than you might have realized. The author is a cardiologist.”

Dr Rosenbaum mentions that the Recovery movement began partly to combat stigma by pointing out that US policy makers wanted to show that people could get better. She quotes a 2003 report that said “because recovery will be the common, recognized outcome of mental health services, the stigma surrounding mental illnesses will be reduced, reinforcing the hope of recovery for every individual with a mental illness”

She then quotes psychiatrist/historian, Joel Braslow, stating that “What unifies the (recovery) movement is its self-perception as a radical departure from the past.” Consequently the problem with recovery, she says, is that it becomes antagonistic to and a subtle rebuke of psychiatry. Thus, psychiatrists are seen as having created dependency so that their patients will need them forever. To this she says that “psychiatrists are no more responsible for the chronic needs often associated with schizophrenia, for instance, than medical doctors are for those associated with HIV.”

The needs are there because of the disease and not because of the efforts of those treating the sufferers.

If you defer to the patients’ choice, a positive outcome is guaranteed because success is self-determination. Whatever the patient decides is in his or her best interests is a positive outcome even if objectively, it is not. And she cites recovery maven, Patricia Deegan, who wrote “Although the phenomenon (recovery) will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it” That reasoning, says Rosenbaum, stifles dissent because who can argue with lived experience.

And she cites Oliver Freudenreich, a German-born psychiatrist who now practices at Massachusetts General Hospital. He pointed out to the author that “It’s a very American idea: if you try hard enough, pull yourself up by the bootstraps, you can do it.”

It is that last statement that bothers me the most because many people cannot recover to the point where they have no deficits and need no medications. Anyone who can’t (and they are in the majority to varying degrees) are made to feel like it is there own fault that they are not better.

Most people are familiar with the concepts put forth years ago by people like Dr Bernie Siegal (Love Medicine and Miracles) and Norman Cousins (Anatomy of an Illness) who talk about curing your diseases with imagery, positive thinking, laughter and relaxation.

These ideas were studied in the case of metastatic breast cancer and there was no improved survival at 5 years. The latest Cochrane metaanalysis concluded that “there is a relative lack of data in this field, and the included trials had reporting or methodological weaknesses and were heterogeneous in terms of interventions and outcome measures.”

A number of years ago, I had the opportunity to meet with a number of women who were involved in one such trial on survival. The most difficult article I’ve ever done because I sat with about 10 women all of whom were terminal and about to die. All of the women told me how desperately they wanted to live and how they hated Bernie Siegal and Norman Cousins. Their philosophy, they said, suggests that if we die from cancer, it will be our fault – that we did not work hard enough to think positive thoughts and to will our cancer away. That is not the case at all. Their will to live was not able to stave off the consequences of advanced metastatic cancer.

Nor is it the case with people with schizophrenia or any other serious mental illness who are not able to throw out their pills and return to good health. Many (or most) will continue to need them and will continue to need support to varying degrees. If they cannot achieve what has been arbitrarily defined as recovery, it will have been their fault. It is not! They should be supported in whatever it takes to keep them as well as they can become.

A Subjective Unscientific Analysis of Anti-Psychiatry Advocates

By Marvin Ross

Many of my Huffington Post Blogs attract some very nasty comments from the various anti-psychiatry adherents. The same applies to the blogs by my colleague Susan Inman and we get some on this blog. The Boston Globe award winning Spotlight Team featured in the film Spotlight, just did a series of articles on the sad state of mental health care in Massachusetts. Wanting to foster dialogue, they set up a Facebook Page for comments. And did they ever get comments!

I’ve been looking at more than my fair share of these comments over the years but decided to try to categorize them. So here goes.

1. I was badly treated, mistreated, misdiagnosed therefore all of psychiatry is evil. In some cases, this alleged mistreatment occurred over 50 years ago. I do believe that this happened in most cases and it should not have happened but it did. Personally, I’ve run into (or family members have) some very incompetent and inept treatment by doctors and/or hospitals. This has occurred in inpatient stays, visits to doctors or in emergency rooms. And some of these misadventures have been serious but I do not spend my time denouncing all hospitals, all doctors or all Emergency Rooms. What I have done is to complain to the appropriate authorities. And most of the time I’m successful.

As my English mom used to say, “don’t throw the baby out with the bathwater”

  2. The other very common cry is that I got help and recovered therefore everyone can recover and if they can’t, it is because the docs are bad or are trying to keep people sick to make money and peddle drugs. I’m sure there is an error term in logic where you extrapolate your particular situation to everyone. That is what these critics are doing. It is like saying I survived prostate cancer which has a 5 year survival of 98.8% so that someone with pancreatic cancer can too. Pancreatic cancer only  has a 4% 5 year survival rate. It is not the same nor is say mild anxiety comparable to treatment resistant schizophrenia. Stop mixing apples and oranges.

3. Involuntary treatment for those who are so sick that they pose a danger to themselves, others, or will deteriorate further without involuntary committal means that the state will lock up, drug and keep everyone indefinitely. None of these fears are true so learn what is entailed and get over it. And when I post a video or an article by someone like Erin Hawkes who went through about a dozen involuntary treatments till a pharmaceutical agent was found that removed her delusions, stop insulting her as some have done by calling her a victim and that she is suffering from Stockholm Syndrome.

How will you learn if you refuse to listen to other opinions?

What I suspect that these involuntary opponents do not understand is that people are not locked up without just cause or forever. There are safeguards in place to ensure regular reviews and appeals. In Ontario a few years ago, a group of so called psychiatric survivors challenged the constitutionality of community treatment orders and supplied the courts with affidavits from people who found them to be bad. This is what I wrote about that in the Huffington Post:

Justice Belobaba only had to look at the affidavit that the plaintiffs filed as part of their attack on CTOs to get an idea of how well they can work. Amy Ness had, prior to being put on a CTO, been involuntarily committed for showing violent behaviour in 2004. In 2007, while hospitalized, Ms. Ness kicked her mother in the back and hit her repeatedly. Then, in 2009, Ms. Ness grabbed a large kitchen knife and marched upstairs toward her mother after discovering a magazine about schizophrenia. In another incident, Ms. Ness kicked and punched the emergency department psychiatrist. By the time she was given a CTO in 2009, she had five hospitalizations.

Since then, while on a CTO, the judge pointed out, she takes her medication and sees her case worker on a regular basis. She has not been hospitalized, she maintains her housing and she works as a volunteer, has a job and takes courses. She does think, however, that the CTO is an attack on her personal dignity.

Herschel Hardin, a civil libertarian once wrote that:

“The opposition to involuntary committal and treatment betrays a profound misunderstanding of the principle of civil liberties. Medication can free victims from their illness – free them from the Bastille of their psychoses – and restore their dignity, their free will and the meaningful exercise of their liberties.”

A psychiatrist I know who is a libertarian (someone who believes that people should be allowed to do and say what they want without any interference from the government) told me that when your brain is immersed in psychoses, you are not capable of doing or saying what you want. Therefore, he was fully supportive of involuntary treatment so that people could get to the position where they had the capacity to do what they want.

4. And then we come to what Dr Joe Schwarcz on his radio show, Dr Joe, calls scientific illiteracy. He used that in his July 10 interview with my colleague, Dr Terry Polevoy, in a discussion on EM Power + and the conviction of the Stephans for failing to provide the necessities of life for their child who died of bacterial meningitis. They refused all conventional medical care, gave him vitamins, herbal products and echinacea till the poor little toddler stopped breathing.

There was a case of scientific illiteracy in that the parents are totally opposed to vaccinations and work for a  company that encourages people with mental illnesses to go off meds in favour of their proprietary vitamins. They had no idea why they were convicted, lashed out at the jury who convicted them and then, at their sentencing hearing, the wife shocked even her own lawyer when she told the court that the Crown had used a phony autopsy report as evidence.

Other examples are that anti-depressants cause violence and suicide. Violence possibly in those under 24 according to a large Swedish study but not in adults. However, the authors state that these findings need validation. There is no definitive proof of this and no evidence of increased violence in adults.

As for anti-depressants causing suicide, a warning that this might be a concern was posted on the labels. Doctors were advised to be cautious when prescribing these for depressed young people.Consequently, this resulted in an increase in suicide attempts.

“Evidence now shows that antidepressant prescription rates dropped precipitously beginning with the public health advisory in March 2004, which preceded the black box warning in October 2004. Since the initial public health advisory, antidepressant prescriptions for children and adolescents decreased, with a consequent increase (14%) in incidence of suicide in these populations.”

On my to-read list is Ordinarily Well The Case for Antidepressants by psychiatrist Peter D Kramer. Kramer is the author of Listening to Prozac and, in this new book, he continues with proof that antidepressants do work and are not simply placebos. Not only do they work, but they are life savers.

In the New York Times review by Scott Stossel, the reviewer points out that when Kramer first began visiting psychiatric wards in the 1970’s, they were filled with people suffering what was then known as “end-state depression”. These were depressed patients in what appeared to be psychotic catatonic states.

Patients like that have not been seen for decades which he attributes to the aggressive use of antidepressants.

And, lest we forget, there is also the common view that the chronicity of psychiatric disorders are caused by the drugs that doctors force on their patients. People love to quote the work of Martin Harrow in Chicago but I suspect that many have not actually read his studies. Some people, he found,  did better after going off anti-psychotics over time than those who continued with their use but that is not surprising. It has always been known that some people improve while others have chronic problems and still others are not able to be helped with anything.

What they do not realize is that in Harrow’s study, 79 per cent and 64 per cent of the patients were on medication at 10- and 15-year follow ups. And that Harrow points out that not all schizophrenia patients are alike and that one treatment fits all is “not consonant with the current data or with clinical experience.” His data suggests that there are unique differences in those who can go off medications compared to those who cannot. And he points out that it is not possible to predict who may be able to go off medication and those who need the long term treatment. Intensified research is needed.

So stop with the reference to Harrow that no one needs meds. And stop also with promoting Open Dialogue when, first, it has never been empirically validated and second, many of their patients are on medication.

5. Regrettably, many of these people lack any civility whatsoever. People are entitled to offer their comments but they should not do so anonymously. And they should show some respect for those who have different views. I’m told that some have been banned from the Spotlight Facebook page and I’ve just banned one anonymous person who posts here for his/her personal attacks. I mentioned above that Erin has been called a willing victim and one who suffers with the Stockholm syndrome for her video and her article. Refute the points she makes but leave the insults aside.

And, one post that I removed from the After Her Brain Broke page on Susan Inman in response to he video What Families Need From the Mental Health System claimed that Susan keeps her daughter locked up and ill and that she likely suffers from Munchausen by proxy.

 

The Unintended Consequences of Focusing on Recovery in Schizophrenia

By Marvin Ross

Much has been said in this blog by my colleague Dr David Laing Dawson and myself on the concept of recovery. Wouldn’t it be wonderful if full recovery was possible but it isn’t. However, I really should clarify that somewhat. Schizophrenia should probably be referred to as a spectrum disorder like autism.

When Bleuler first coined the term in 1908, he referred to it as the schizophrenias and said that it was a physical disease process characterized by exacerbations and remissions. No one was ever completely “cured” of schizophrenia — there was always some sort of lasting cognitive weakness or defect that was manifest in behavior. Unfortunately, over the years, it began to be considered to be one disease only.

In a recent article in Psychology Today, University of Toronto medical historian, Edward Shorter, had this to say. In adolescent-onset schizophrenia, some don’t recover at all; others make only a “social recovery,” and some maybe go on to have a normal life or “Maybe not”. Shorter then adds that “The field has made virtually no progress in unpacking chronic severe illness and differentiating out several distinct entities. In no other field of medicine would this be conceivable!” and “Some involve loss of brain tissue, others don’t. Some have to stay on meds, others don’t. Some get well, others don’t. These are not all the same illness!”

In fact, it has long been recognized that there are three outcomes to schizophrenia. Roughly a third are treatment resistant and remain very ill, a third can be helped with meds and other treatment modalities to improve sufficiently to lead a reasonable but disabled life, and a third will have one psychotic episode, receive treatment and never have another or any long term deficits.

According to the Treatment Advocacy Center, 10 years after diagnosis, “one-fourth of those with schizophrenia have recovered completely, one-fourth have improved considerably, and one-fourth have improved modestly. Fifteen percent have not improved, and 10 percent are dead.”

How do you think the families of the majority of those with non recoverable schizophrenia or the individuals themselves will feel when we hold up to them what is achievable by only 25%? And, we tell them that it is achievable. Why can’t I (or my son or daughter) achieve that. Have I done something wrong? Cancer is an interesting analogy. There is not one cancer but many. And each cancer has its own unique characteristics and prognosis.

Non melanoma skin cancer (basal cell and squamous cell) have 5 year survivals of 95% and 90%. In contrast, the 5 year survival for pancreatic cancer ranges from 1% for stage IV to 14% from stage 1A. Imagine if we told those with stage IV pancreatic cancer not to worry because 5 year survival is 95%. Ridiculous isn’t it but that is what we tell people with schizophrenia. Don’t worry, you should be able to recover because 25% do.

Now, I’m not saying to abandon hope but rather to be realistic and pushing recovery is not realistic if it is not qualified.

The second problem was mentioned to me by my friend Kathy Mochnacki of Home on the Hill in Richmond Hill Ontario. She pointed out that if you claim that recovery is possible, then why continue doing research. People can recover so no need for it. Of course, scientists know better but they are dependent on funding from governments and other agencies.

So, let’s all inject some scientific reality into a very troubling and serious disease.

A Psychiatrist Looks at Recovery And Finds it Wanting

By Dr David Laing Dawson

There is something to be said for challenging our attitudes and shaking up our systems every decade or so, trying to improve them. Improve them, review them, discuss them, reorganize them, improve them. Even if it is really only putting old wine in new bottles. The new bottles can create a buzz, some excitement, add some energy, or, to use one of those terrible management phrases, achieve “stakeholder buy-in.”

But language is important, especially when we use unassailable words, feel good words to hide something quite different. The Pro-Life Movement. Who could object to that? Until you realize it is really an anti-choice movement, and that it ignores the reality of the suffering and deaths of millions of young women around the world.

And in all our systems, not least in Mental Health and Mental Illness treatment, we are fond of forming a myriad of committees and steering groups, planning groups, focus groups that create a language of their own, and formulate, vote on, and sanction such meaningless phrases as,

“Co-occurring issues and conditions are an expectation, not an exception.
The foundation of a recovery partnership is an empathic, hopeful, integrated, strength-based relationship.
All people with co-occurring conditions are not the same, we all have a responsibility to provide co-occurring capable services.
When co-occurring issues and conditions co-exist, each issue or condition is considered to be primary.
Recovery involves moving through stages of change and phases of recovery for each co-occurring condition.
Progress occurs through adequately supported, adequately rewarded skill-based learning for each co-occurring condition or issue. ”

–and then, on paper, design the most cumbersome and impossible organizational structure to carry out this mission, this formulation.

I get tired just thinking about it.

Usually such organizations and arrangements are wasteful but benign and fall by the wayside in a few years. But a few can be both wasteful and destructive.

Now the “recovery movement”, or “recovery model.” Who could object to the word “recovery”?

Until you look closely at it’s origins and implications.

It comes from addiction services, their philosophies and jargon. An alcoholic who no longer drinks is “an alcoholic in recovery”, or a “recovered alcoholic.” Similarly an addict. It is a useful term used in that context, I think, for it implies quite reasonably that if the alcoholic no longer drinks he is recovered, but still vulnerable. His recovery may end if he takes glass to mouth. And it also implies, quite clearly, that reaching that point of recovery and maintaining that point of recovery is primarily his own responsibility, an acknowledgement that ultimately he, the alcoholic, has the power within his own hands (with a little help from his friends) to choose to be and stay “recovered”.

But the “Recovery Model” as it crept over to mental illness, carried with it an anti-medical tone, a clear implication that we doctors and nurses did not pursue a goal of recovery for our patients. We were in the business, it implied, of maintaining illness, and thus maintaining our positions of power and our paychecks. A trifle insulting to say the least.

I, and all the people in our professions I know, are delighted when one of our patients really succeeds. Drops back to visit after graduating from High School, or University. Comes in to show me her brand new baby girl. Comes in and says, “I’m doing fine doc, just need my prescription renewed.” Sends me a card from his travels in Europe.

Well, I can get over the insult and their pejorative use of the term “medical model”.

It is those other implications of “the recovery model” that can be quite damaging. It does carry an implication, as with alcoholism, that the mentally ill person, this person suffering from schizophrenia, has within his own hands, his will power, the way he conducts his life, the means to “recover.” It implies that those who don’t recover are simply not trying hard enough. It implies that if you have to take a lot of drugs to stay well you are not trying hard enough. And, it must, by it’s own convictions, ignore, banish from view, those with very serious mental illness who can hope for some quiet, some peace, some contentment, some happiness, some dignity, a relationship, some activity that gives them a sense of value, but never full recovery.

We would all like our patients to recover, to become well, to be able to live full lives with minimal suffering. Fine. But the “Recovery Model” with its emphasis on hope and prayer and peer support and its mantra that everyone can “recover” (with hard work and a little help from his friends) provides a foundation of easy denial for our politicians, our civil service, and our managers.

Often, through history, one can find that the theories of the day, regarding the human condition, are really rationalizations, comforting explanations for the terrible realities of the day. The Recovery Movement is a theory, a formulation, a rationalization for this day. It allows us to believe all mentally ill could get well if they really wanted to, just as all alcoholics could stop drinking if they wanted to or had to (with a little help). It allows us to ignore the millions of mentally ill now living in our prisons and flop houses, on the street and under bridges.

Has Mad in America Changed its View of Medication for Schizophrenia?

newer meBy Marvin Ross

For those of you not familiar with Mad in America (MIA), it is a US organization begun by journalist Robert Whitaker. He is the author of books that are highly critical of modern psychiatry and its reliance on medication particularly for schizophrenia. As they say on their website they “investigate the problems and deficiencies with the current drug-based paradigm of care.”

I happened to come across this announcement on their site: “In World Psychiatry, two Canadian psychiatrists argue that the body of scientific evidence about schizophrenia shows that it is not a progressive illness and therefore we should have much higher expectations of full recoveries than we do.” I was intrigued because one of the authors of this study is Dr Robert Zipurski of McMaster University in Hamilton, Ontario.

Once before, MIA cited a study by him that used quotes selectively. They implied that Dr Zipurski provided proof of the evils of antipsychotic medication. Their website stated “decreases in brain tissue volumes are attributable to antipsychotic medication, substance abuse, and other secondary factors.” But, a careful reading of that paper found that when people discontinue medication early, the relapse rate is up to 78 per cent compared to 0-12 per cent for those who remain on medication.

MIA did not provide its own interpretation of this current paper which Dr Zipurski wrote with Dr Ofer Agid of the Centre for Addiction and Mental Health in Toronto. The two authors continue from the previous paper mentioned above and point out that:

Relapse of psychotic symptoms following a remission from a first episode of schizophrenia is also observed to occur in over 80% of individuals when studied naturalistically. This is largely attributable to discontinuation of antipsychotic medication rather than to the effects of an unrelenting disease process. The risk of symptom recurrence in remitted first episode patients receiving maintenance antipsychotic treatment is estimated to be in the range 0-5% in the first year of follow-up, compared to 78% in the first year off medication and close to 100% after three years off medication.

The authors then go on to wonder why outcomes are so poor if people have the ability to remain in remission. The reasons, they say, are numerous including the lack of services for these people or that they refuse treatment. Then, of those who are treated, about 20-30% are treatment resistant to the available antipsychotic medications. Others are non compliant with medication and so have relapses and re-hospitalizations. For others, their concurrent problems with alcohol, drugs, and other mental illnesses mitigate against retained recovery.

They conclude that while “there is room for debate about how recovery should be defined, it should be clear that most individuals with schizophrenia have the potential to achieve a stable remission of symptoms and substantial levels of satisfaction and happiness.”

That stability, they say, can be achieved with antipsychotic medication. Physicians/scientists/psychiatrists who observed that this dementia praecox or group of schizophrenias appeared to be a progressive disease were observing people with this illness pre 1960 before anti-psychotics were available – they were not wrong or overly pessimistic as there were no effective treatments at the time.

And it does take time for science to recognize that if someone begins antipsychotics at about age 19 and remains on them along with good medical care, that they can get to old age and remain stable or even improve.

It is encouraging to see MIA recognizing the importance of drug treatment by their promotion of this paper.

Towards a More Honest Interpretation of Schizophrenia Recovery

Marvin RossBy Marvin Ross

Listening to an interview that Katherine Flannery Dering did last week about her book Shot in the Head A Sister’s Memoir, A Brother’s Struggle reminded me about how our emphasis on “recovery” in schizophrenia can actually hurt its victims and their families. As she explained in her interview, Ms Dering’s brother, Paul, was one of the many for whom recovery was and is a dream. Perhaps it is time that we applied some reality to schizophrenia outcomes before we wave the recovery flag for everyone. By not doing so, we make those with a horrible disease and their families suffer even more.

The professional version of the Merck Manual which is a highly respected medical source for all illnesses states that “Overall, one third of patients achieve significant and lasting improvement; one third improve somewhat but have intermittent relapses and residual disability; and one third are severely and permanently incapacitated. Only about 15% of all patients fully return to their pre-illness level of functioning.”

These outcomes have not really changed much over the years although, as a UK source states, “Early intervention and more effective treatment mean that the outlook is not as bleak as it once was.” Still, why do we act as if everyone is going to get completely better?

The term recovery does tend to imply that the person is cured. Recovery in schizophrenia is defined by the Scottish Recovery Network as “being able to live a meaningful and satisfying life, as defined by each person, in the presence or absence of symptoms”.

The goal for each person should be tempered by the reality of their situation. For someone like Ms. Dering’s brother, over time, they realized that the best the family could hope for was stability and compliance with the rules of his group home. Yet too many in the mental health community tend to set up “recovery” meaning “completely better” as a universally achievable goal. And then when the majority do not, and cannot achieve that goal, they and/or their doctors are deemed to be deficient.

There was and probably still is a concept for breast cancer that suggested that group therapy helped women with breast cancer to cope and live longer. This concept became quite popular with the 1990 publication of a book called Love Medicine and Miracles by Dr Bernie Siegel. Those concepts were subjected to considerable scientific study and I had the privilege to interview a group of women with stage 4 metastatic breast cancer who had offered to be in a clinical trial to test this. It was the most difficult interview I’ve ever done.

The women all knew they were going to die soon and all of them said how much they hated Dr Seigel. They said that they knew they were dying and that no amount of group therapy, imagining that their cancer cells were being destroyed by their thoughts, relaxation exercises or meditation was going to change that. And, while they did not want to die, they felt that theories like those of Siegel suggested that if they did not get better it was because they did not work hard enough at the exercises.

Not only did they have terminal cancer but they were made to feel that not getting better was their fault.

The American Cancer Society states “the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can by themselves help people with cancer live longer.” It is cruel to suggest otherwise.

Similarly, when we hold up as achievable what 15 or 20% of those diagnosed with schizophrenia can attain as a goal for everyone, we do a disservice. Our goal for recovery should be for each person to be able to get the full range of treatment available so that they can achieve as much as they themselves are able to achieve.