Monthly Archives: July 2015

The Course of a Psychotic Illness – In Response to Psychiatry and the Business of Madness

By David Laing Dawson MD

In the late 1960’s and early 70’s when a young man or woman in a psychotic state was brought to the hospital by family, by ambulance, by friends or police, we would admit him and keep him safe. He would have a physical examination, some blood tests, and be fed, if he was willing to eat. If she was delusional, hallucinating, talking in an incomprehensible manner, we would optimistically hope that the cause of this was the ingestion of illegal substances, perhaps LSD, Mescaline, mushrooms.  We would wait a few days before concluding otherwise. In fact, we sometimes waited one or two weeks, even three weeks, before concluding that this was a psychotic illness not induced by drugs. Drug induced psychosis actually clears quickly; it doesn’t take weeks, but we might indulge in wishful thinking along with the boy or girl’s family.

The history, the symptoms, the family history might clearly point to one of the psychotic illnesses studied and delineated over the previous hundred years (schizophrenia or manic-depressive illness), or not clearly one or the other, perhaps both. Nonetheless we now had effective treatment, drugs that actually work. These would be prescribed. And over the next few weeks to perhaps 8 weeks, our young man or young woman almost always got substantially better. The few that did not progress that quickly had been quietly ill for years before the admission. Average length of stay in the hospital grew shorter and shorter, at that time somewhere between 20 and 60 days.

But the other bit of folk wisdom with the backing of experience was that it usually took at least three admissions to hospital before such a patient achieved long-term stability. And this happened for four main reasons: we prematurely stopped the medication, severe side effects forced us to stop the medication, the patient stopped taking his medication, or the patient, stable within a quiet, supportive environment, entered a new, complex, chaotic and demanding environment that provoked relapse (a relationship, university, a job, travel, even a poorly considered therapeutic program.)

And throughout this process, the family, the patient, and the caregivers all struggled to find a way of understanding, talking about the illness, and finding a balance between cold truth and hope.

It often took three or four admissions before the patient and his family could come to terms with having a mental illness that required medication for a long time. This was not aided by our own optimism, our hope that a six or twelve month course of these very new medications would be sufficient to keep psychosis at bay for years to come.

What actually happened, inevitably, after stopping the medication, was a three or four or even six month period of wellness sans drugs, giving unfortunate support to the conviction of not needing them, followed by relapse of illness, of psychosis.

So these admissions and recoveries and relapses and re-admissions often spanned 5 to 10 years before stabilization was achieved. And, for those who eventually stayed on their medications, another 5 to 10 years of recovering the lost skills, the lost time, of learning what to avoid, of finding a way to live a full life with a chronic illness. Not least of those adaptations is finding a way of thinking about, accepting, as part of one’s past and present, several periods of psychosis, of misreading the world, of damaging relationships and sense of self, of being delusional.

I have been living in and around the same city now for 45 years. And from that period in the 1970’s I have known a few people who gradually made complete recoveries while consistently taking their medication, adjusted over time. And while they have recovered and lead full lives they know they are vulnerable; they know what to avoid; they know they must stick to some routines. I know others who take their medication and have achieved stability if by no means full recovery. And I know of others who have not, who have never been willing to take this medication over a long period of time. Some have died. A few others I see around town occasionally, one in a torn raincoat, walking down the center of the street gesticulating madly and talking to the clouds, another, a woman, standing outside a variety store haranguing exiting customers about incomprehensible injustices, and another plodding along the sidewalk, his head bent in unusual fashion, talking to himself.

But never, in those 45 years, have I seen someone who suffered from this kind of severe psychotic illness, recover fully without consistently taking his or her medication. You’d think by now, if it were possible, I would have seen it.

See Psychiatry and the Business of Madness in Mad in America

Advertisements

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.

What About the Side Effects?

DSC_0007By Marvin Ross

My last post on re-evaluating clozapine use resulted in a couple of comments in other forums on the side effects of this agent.  And my reaction is what about the side effects?

I mean, let’s face it, all of us are concerned about the side effects of medications that we take. That is perfectly understandable and we should be aware of the potential side effects of any drug that we are prescribed. But, there are a number of things that we should also be aware of. First and foremost is that everything has potential side effects. This includes everything from the medicine you are prescribed to vitamins and herbal products.

As an example, vitamin A which the body stores so that the more you take, the more remains in your body, can cause “nausea, vomiting, headache, dizziness, blurred vision, clumsiness, birth defects, liver problems, and the possible risk of osteoporosis. You may be at greater risk of these effects if you drink high amounts of alcohol or you have liver problems, high cholesterol levels or don’t get enough protein.” This is from the Food and Drug Administration in the US.

From that same site, water soluble vitamins (where the excess is flushed out of the body by the kidneys) can cause “flushing, redness of the skin, upset stomach, nerve damage to the limbs, which may cause numbness, trouble walking, pain, kidney stones, and increased iron absorption.

Herbal products which many people take, also have associated side effects with them. Echinacea which is often taken to prevent a flu has been shown to cause asthma attacks, hives, swelling, aching muscles and gastrointestinal upsets. Feverfew should be avoided by pregnant women as it can trigger uterine contractions.

But, even more importantly, many herbal products can interact with prescription medications. A number of products such as ginkgo biloba and chamomile can increase the risk of bleeding for those taking blood thinners. And, of course, the popular St John’s Wort is likely responsible for many unwanted pregnancies as it reduces the effectiveness of oral contraceptives. There are likely many people on this earth who should have been named St John’s Wort . It also reduces the effectiveness of digoxin used for heart problems and cyclosporin use to prevent organ transplant rejection. There is at least one case of a kidney rejection due to St John’s Wort recorded in the medical literature. Probably more but I stopped searching after one.

St John’s Wort taken with SSRI anti-depressants can result in a condition known as serotonin syndrome. The symptoms include confusion, agitation, restlessness, extremely high body temperature, sweating, fast heart rate, unusually increased reflexes and unusual muscle stiffness, causing poor control of movement.

And, let us not forget that something as seemingly benign as grapefruit juice might be bad for you. It interacts with many prescription medications either increasing or decreasing their effectiveness.

The second fact that we should be aware of is that not everyone gets the listed side effects from taking vitamins, herbal products of prescription drugs. The side effects listed are those problems that at least a few people reported when the pharmaceutical agent was undergoing trials. There are drugs that I personally cannot tolerate at all while most other people can. And there are prescription products that do not bother me in the least but others can’t tolerate.

There are differences between people and, if you look at the clinical trials conducted in the testing of drugs, you will find that the placebo group (who got a pill with no active ingredients) also reported side effects and the side effects they reported were the same as the ones on the active ingredient.

In the case of anti-psychotics, they cannot be evaluated against placebo because to do so would be unethical. It would amount to withholding viable treatment to someone who needs it. But they are evaluated against other efficacious anti-pychotics as was clozapine. In one trial comparing it to olanzapine, it was found that 31% of those on clozapine experienced weight gain compared to 56% on olanzapine. (P18).

I’m not trying to minimize the importance of side effects but rather to point out the concept of cost benefit. What is the cost of taking that drug (in terms of negative effects) compared to the benefit (in terms of reduced symptoms or eradication of a problem). Can we tolerate nausea that may go away in exchange for a reduction of symptoms that are even more severe and possibly chronic or life threatening?

When it comes to weight gain, one person once told me that he would rather be fat than psychotic with the voices and delusions. Other people endure numerous rounds of chemotherapy with all its side effects for the benefit of shrinking tumors or ridding the body of cancer cells.

What each individual decides should be based on their own evaluations carried out in discussions with their health care providers. Health care providers do not want to see side effects so severe that the patient cannot benefit. Over the years, I’ve heard two psychiatrists tell me that they’ve had patients with treatment resistant schizophrenia who were tremendously helped by clozapine only to develop agranulocytosis. The clozapine had to be stopped and the patients were doomed to a life of untreatable psychosis.

And that is an important point. With careful monitoring, agranulocytosis can be caught before it does much damage. As one person who commented on my previous blog said, “My son was put on Clozapine in 1997 after having been in and out of the state hospital for the previous 13 years. He had 11 wonderful years till he developed the blood condition that could be fatal and could no longer take the medication.”  and “He had a life worth living those 11 years.”

In fact, a study published in Schizophrenia Bulletin actually found that “Clozapine appears to reduce the risk of both natural and unnatural mortality in patients with SMI.” That was published in 2014 and involved almost 15,000 people. Very toxic medications are used to treat cancer because cancer is a very serious disease. Untreated schizophrenia also has a very bad outcome and the drugs presently available do have many side effects unfortunately but they do help for most.

Both cancer and schizophrenia are far worse than having a headache or sore joints yet it is estimated that about 15,000 people die annually and an additional 200,000 people are hospitalized from taking aspirin and other similar pain medications for aches and pains that will likely resolve with rest and other treatment options.

So, don’t listen to the critics of medicine/psychiatry, but make your own informed decisions.

Time to Re-evaluate Clozapine Use for Improved Schizophrenia Outcomes

By Marvin Ross

The gold standard treatment for schizophrenia has been available since the 1960s but, other than in China, it is rarely used. Given its superiority over other treatments and the improvements those on it demonstrate, it is time for governments to rethink its use. It has the potential to improve lives and to reduce the costs associated with chronic schizophrenia.

Clozapine (clozaril) was introduced in the early 1960s by the Swiss pharmaceutical company Sandoz (now Novartis) as a treatment that avoided many of the side effects of the drugs then in use. Unfortunately, it was quickly withdrawn when a rare blood disorder called agranulocytosis was discovered. This is a condition that represses the white blood cells leaving the person open to infections. The incidence of this condition is only 1-2% and it can be prevented by ensuring (as is done now) that everyone on clozapine have regular blood tests.

Because the incidence of this side effect is minimal, can be prevented before it becomes a problem with blood testing, and clozapine has shown to be superior for all symptoms of schizophrenia, it was granted a license in the US and Canada in 1990 and 1991. At the same time, a number of new anti-psychotics were introduced that were hoped to be as efficacious as clozapine but without the blood side effect.

Clozapine still shows greater efficacy than all the others. I’ve heard psychiatrists say that if they had a child develop schizophrenia, they would put him/her on it. But, it is reserved only for people who have treatment resistant schizophrenia and have failed to show significant improvement with 2 or 3 of the other agents. Most jurisdictions will only fund its use through a special drug program so they can monitor blood as is the case in Ontario. That makes it difficult for many doctors to enroll their patients who might benefit.

And while regular blood testing may be expensive, it is likely considerably less expensive than poor outcomes. A 2013 study of Canadians taking clozapine found that “In the pre-clozapine period more than 50% of the patients had at least 2 hospitalizations, this proportion decreased dramatically to 13% after clozapine was initiated. More than 55% of patients had no hospitalizations during clozapine therapy.”

A 2012 US study summarized the benefits of clozapine as:

reducing the number of suicides;

greater reduction in the positive symptoms (delusions, voices);

improvement in cognition contributing to better work and social function; higher quality of life and longer time to discontinuation; and,

decreased relapse.

This last point, the author suggests, results in those taking it preferring it to other treatments.

The most recent study on clozapine came out this June and was conducted by scientists at the Centre for Addiction and Mental Health in Toronto. They found that the major metabolite of clozapine helps protect or enhance working memory function in people with schizophrenia. Commenting on this research, Carrie Jones of Vanderbilt University who was not involved in the work had this to say. “This study is very encouraging because the current treatments for the cognitive deficit in schizophrenia are only marginally effective. To have data that suggest a path forward for enhancing cognition by any approach is tremendously important”.

Despite these positives, the use of clozapine remains underutilized in the US, UK, Canada, New Zealand and Australia. In the US, it is estimated that only 3% of patients are on clozapine. In fact, According to Herbert Y. Meltzer, MD, Professor of Psychiatry at the Vanderbilt University School of Medicine, “leading economists have cited underuse of clozapine for treatment resistance and suicide as one of the two greatest failures of mental health providers to practice evidence based medicine.”

Meltzer also commented that “The fear of agranulocytosis is grossly exaggerated. The risk of its occurrence is way under one percent and the risk of death from agranulocytosis, with monitoring and treatment, is less than one percent of that.” When monitored correctly, the frequency of agranulocytosis with clozapine has been estimated to be as low as 0.38 percent.

As any new and improved treatments for this horrific disease seem to be way off in the future, policy makers really should look at increasing the availability of clozapine. In China, clozapine is the most used anti-psychotic and we should catch up for the sake of those who are ill.

Disclosure – I am not funded nor am I in the pay of Novartis or any pharmaceutical companies that manufacture clozapine/clozaril.