Treatment Resistant Schizophrenia and the Family – A Book Review

By Marvin Ross

My Father, Fortune Tellers and Me: A Memoir, is a book that should be mandatory reading for all counsellors in training, psychologists, social workers, psychiatrists and anyone who is working with or involved with families of those with schizophrenia – particularly untreated or treatment resistant schizophrenia.

Eufemia Fantetti, in telling the story of her family and her mother’s treatment resistant illness, has provided us with the full horrible extent of the complete destructive power of this illness. I can’t think of anything that depicts so vividly the impact on the family but the book also gives us more than that – family love and resilience. The book also demonstrates our total failure as a society to help care for people who are that sick.

Eufemia’s father had a pretty good life as a 30’s something Italian immigrant in Toronto – single, good job and living in a vibrant city with a large Italian subculture when he returned to his home town to take an arranged bride, a second cousin, years younger than him. Eufemia opens the book with a wedding photo of her parents in front of the statue of St Anthony of Padua holding the baby Jesus who, Eufemia says, is waving ciao to someone in the church.

Her father she describes as unsure of himself having only seen his bride twice before that day and he had never spoken to her. She points to her mother, Lucia, with Jordan almonds that symbolize health, wealth, happiness, fertility and longevity “My folks scored two out of five”. Married life continued in Toronto and soon Eufemia came along.

Lucia became increasingly more erratic as the years went on and so the family went for a long stay to Italy where it was hoped that she could get medical help. Once her treatment with an Italian doctor started, her father returned to Canada leaving Eufemia with Italian relatives. Lucia quickly stopped taking her medication and eventually, mother and daughter returned to Toronto.

Of course, the bizarre behaviour continued and often Eufemia was the brunt of the mother’s anger and physical abuse. At one point, a little girl in the neighbourhood had drowned in an accident and Lucia took Eufemia to the visitation against her father’s wishes. Visitations freak me out as they are not part of my cultural upbringing and I’ve never been comfortable standing around with a cup of tea making small talk while grandpa lies dead a few feet away. Imagine what it must be like for a young child especially when the departed is another child?

Lucia drags Eufemia to view the body and, if memory serves, makes her touch the little girl. She then gets in the line and introduces the grieving mother to her own daughter who she describes as the light of her life. This causes the departed’s mother to start howling in anguish and the two leave.

Later, Lucia goes to the factory where her husband works and takes his car in order to drive Eufemia to school. After dropping Eufemia off, she plows into the back of a truck and takes off, puts the car in the garage and says nothing. That evening, the damage is discovered and the father calls the police to report it. The police arrive quickly as they had been out looking for the hit and run driver but Lucia was in church so they come back later.

With all the times that Lucia spent in church, I have to wonder why no priest ever realized she was in need of medical help and suggested it. It was mainly the police who did and, after taking their report from Lucia, the officers parting advice to the family was to take her for medical help. It was because of that suggestion that Lucia was diagnosed with schizophrenia.

The diagnosis did not lead to any improvement and Lucia continued to terrorize the family often smashing the house and inflicting abuse on Eufemia. There were countless encounters with the police, charges, restraining orders and, at one point, a police officer arrived and gave Eufemia’s father the business card of an Italian social worker so that he could get help. The cop said “sir, you cannot continue to live like this”.

Eufemia regularly saw a counsellor to help her through and the best advice she was given was to graduate from high school and to go to university as far away from Toronto as possible. Eufemia moved to Victoria, BC and lived on the west coast for many years while trying to help her father as best she could. Eufemia’s father endured until the stress of his life took its own toll on him and he had his own mental collapse.

It eventually took him four years to divorce his wife in a proceeding that his lawyer told him was the most complex of his 30 years practice as a lawyer. Ten years ago, Eufemia moved back to Toronto and she and I  were introduced by our mutual friend, Susan Inman (and Bridgeross author of After Her Brain Broke). I was somewhat familiar with the story in the book but not the full details and always hoped that she would write of her experiences.  I’m delighted she has and the book exceeds all expectations I had for it.

Eufemia often posts conversations with her father whom she calls Pappy on Facebook and the love and affection shines through along with Pappy’s optimism and good sense:

My dad insists that the Lord watched out for him – is certain the biblical sky dignitary dealt the cards for the game of Scopa my father played throughout his life.

“And if I didn’t marry the woman who ruined my life” she quotes her father saying, “I wouldn’t have you. I got what I wanted in this world: someone I could talk to. I prayed for someone reasonable and I got you.”

Words escape me!

Going back to the police, Eufemia states that “in a fair and kind society, police wouldn’t be tasked with the role of front-line mental health workers. We wouldn’t close our hearts to the suffering of others. We wouldn’t blame people for their illnesses…..”

At one point after her return to Toronto, Eufemia goes to visit her mom who is under the care of the Provincial Public Guardian and Trustee housed in a nice one bedroom apartment. Eufemia notices that all her blister packs of pills are months out of date and so decided to take Lucia to the doctor’s office for her monthly anti-psychotic injection.

The pleasant nurse points out that “we have not seen you for awhile Lucia”. And my reply is why do they not ensure that she does get her monthly shot and make sure that she is taking the meds in her blister pack? Should their job not also be to ensure that the vulnerable patients under their care at least get the medication they are supposed to?

And a final word about Eufemia. Her story collection, A Recipe for Disaster & Other Unlikely Tales of Love (Mother Tongue Publishing) was runner up for the Danuta Gleed Literary Award and won the F.G. Bressani Prize for short fiction. A recipient of the Commonwealth Broadcasting Award, she is a graduate of The Writer’s Studio and holds an MFA in Creative Writing from the University of Guelph. Her work has appeared in the Globe and Mail, Event Magazine, and The New Quarterly. She teaches at Humber College and lives in Toronto.

I cannot recommend her book strongly enough.

My Father, fortune-Tellers, & Me By Eufemia Fantetti, Mother Tongue Press ISBN-13: 978-1896949758

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.