Insight deficit leaves schizophrenia patients (and many doctors) unaware

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      Gerhart Pahl has three sons who live with schizophrenia. Each time one fell ill, it took years for him to fully come to grips with his diagnosis, Pahl recalled in a telephone interview. Furthermore, he said that lack of insight re-emerged long after each one accepted his condition and began adhering to a treatment regimen.

      “One of my sons worked at McDonald’s,” Pahl recounted. “At 2 in the morning, he came to the house and said: ‘I have to go to McDonald’s and warn them.’ ” His son explained that a bucket of grease at the restaurant was radioactive and he had to alert his coworkers to the threat.

      Although Pahl’s son had acknowledged that he struggled with a mental-health condition, Pahl said he could not understand that the bucket of radioactive grease was a manifestation of the disease.

      “How do you defuse this situation when somebody is not responding to logic?” Pahl asked. “They don’t realize that this is a problem with their mental illness because it is just as real as the alternative.”

      He described this disconnect as one of the most frustrating aspects of schizophrenia. “If it were any other serious illness, you could diagnose the problem, devise a solution, and work towards an outcome,” Pahl continued. “When people don’t have insight as to what’s wrong with them to start with, you can’t work together on a plan.”

      Known as insight deficit or anosognosia, the phenomenon is described in academic literature as “among the most common” of schizophrenia’s symptoms. But several people whose children have schizophrenia told the Straight it is a symptom that remains poorly understood and in need of greater attention.

      According to the B.C. Schizophrenia Society (BCSS), the brain disease affects one in every 100 people. A May 2014 paper published in the journal Clinical Neuroscience estimates that between 57 and 98 percent of cases involve poor insight as a core attribute. That is, the majority of patients diagnosed with schizophrenia are not fully aware that they are sick.

      And yet, “Insight is rarely specifically measured in treatment studies,” the paper continues. “Regrettably, but not surprising, no medication specifically targets insight.”

      Pahl, who sits on the BCSS Foundation’s board of directors, noted it is common for people to confuse insight deficit with denial. Although denial is a mindset that can be debated and changed, he explained, a lack of insight can see a patient fail to acknowledge even the existence of an illness, which makes it a belief that is significantly more difficult to address.

      “Denial is kind of a defence mechanism,” Pahl added. “You can deal with it even though it might take a long time.…With anosognosia, it is an inability to make a logical connection. A true inability.”

      Dr. Diane Fredrikson helps patients and their families work through a lack of insight. In a telephone interview, the psychiatrist and lead physician with Vancouver Coastal Health’s early psychosis intervention team described anosognosia as “one of the hardest challenges we face in psychiatry and mental health in general”.

      Fredrikson noted that an insight deficit can affect a patient’s adherence to a prescribed therapy and complicate treatment in additional ways.

      “Often, when people are suffering from a psychosis episode or a psychosis illness, their brain does not appreciate that they are experiencing an illness,” she said. “That presents a unique challenge then, because the young person who is affected is not coming willingly to see a doctor.”

      Fredrikson said that can place the burden of ensuring that a patient receives treatment on a friend or relative. “Someone who might be more concerned than the patient themselves,” she added.

      Marguerite Hardin, a family-support coordinator with the North Shore Schizophrenia Society, emphasized the difficult circumstances that anosognosia can create when a patient refuses treatment.

      She noted the B.C. Mental Health Act says that under certain conditions, treatment can be provided without an individual’s consent. But she argued that police and health-care providers are often reluctant to apply those provisions.

      “The way that it affects mental-health services that I find so frustrating is that they seem to systematically pretend that this phenomenon doesn’t exist,” Hardin said. “It creates a lot of grief and suffering because, often, the family isn’t able to find a way until something rather drastic and even horribly tragic happens. They are just left hanging there.”

      Jane Duval recalled that it was “about 10 years” from the time her son was diagnosed with schizophrenia to when he accepted his condition and began to fully adhere to a treatment program.

      “We tried to argue, which doesn’t work at all,” she told the Straight. “As a family member, I think this is probably one of the most puzzling things [about schizophrenia]. It has nothing to do with intelligence. It is an absolute inability to see that one is ill, despite all of the evidence there may be.”

      Duval said the work of an American psychologist named Xavier Amador helped her family. She explained he advocates for a system called LEAP, which stands for listen, empathize, agree, and partner.

      “You find common ground that you can move forward on,” Duval said. “It can be very difficult, but you have to learn to do it.”

      Recalling the episode where his son tried to run to McDonald’s in the middle of the night, Pahl recounted how he avoided any direct disagreement on facts. Instead, he acknowledged his son’s concerns but then asked for his son to trust him when he said he didn’t think that what he was saying sounded right.

      “And at the end of the day, he trusted us,” Pahl said.

      Comments

      6 Comments

      Ana Novakovic

      Jun 24, 2015 at 3:08pm

      Thank you so much for this article. It draws attention to a very significant issue that thousands of families in BC struggle with. It's distressing how poorly recognized anosognosia is, even among health professionals. Articles like this will hopefully help change this so people can get the help they need when they need it and families will be in a better position to cope.

      Marilyn Baker

      Jun 24, 2015 at 5:34pm

      Yes, thank you so much. An excellent article that describes very precisely one of the most frustrating problems with schizophrenia. Articles like this help not only families but also friends and acquaintances. Listening, empathizing, agreeing and partnering truly help people with this serious brain disease.

      Susan Inman

      Jun 25, 2015 at 8:34am

      Kudos to Travis Lupic and The Georgia Straight for explaining one of the most troubling symptoms that often impacts people with schizophrenia and those who try to help them. We need this kind of well-informed coverage of mental illness, especially because we lack adequate public mental illness literacy campaigns.

      Travis Lupick is one of the panelists at this Sunday's BC Schizophrenia Society's AGM which will focus on better understanding the relationship between untreated mental illnesses and violence.

      You can register for this free event at:

      http://www.eventbrite.ca/e/debunking-myths-surrounding-schizophrenia-psy...

      Noel J

      Jun 26, 2015 at 9:43am

      Anosognosia is definitely a real condition but it can be managed with time, education and some luck. It is very difficult for a caregiver to understand "why can't this person see that they are seriously ill?". It was many years before our son recognized that he was seriously ill and made the connection between "take meds and be 'somewhat' OK and don't take meds and off to hospital yet again". You would think that one traumatic episode would be enough but alas no. Eventually the pain of being really ill, some education and some luck made a difference but what made the most difference was getting the "right" meds. It is such a trial and error process, which is only made worse by the psychiatrist "revolving door" problem, that it is hardly surprising that anyone would lose patience and thus faith in the benefit of meds. The "revolving door" problem is the lack of continuity with psychiatrists. Go to hospital and get a different one from the last visit. Get discharged to yet another different one from when you went in, and so on....It is like starting all over again every time. They all have there own "pet theories" and med preferences! I once asked a very prominent psychiatrist, whom I totally trusted, "Is psychiatry a science?". His answer was "Is that a serious question? It is getting much better but it still largely personal experience and trial and error".

      If I was balancing the supposed benefit of meds against the potential negative of side effects chances are after many unsuccessful trials I would give up and I don't have anosognosia to hamper me!! For our son, and many others, clozapine was the answer. Like all anti psychotic meds it has side effects which, apart from anosognosia, make compliance a challenge. For the first time in 10 yrs the ever present malevolent "voices" were largely under control and for him that made the "connection" to "I can be well enough to be functional".

      Thankfully the past few years have largely seen stability for him and thus for us as well. It came as a surprise to me to discover that clozapine is under prescribed in some places. It may not work for everyone, especially because of side effects which are specific to clozapine, but not to try is a terrible price to pay!

      Once More

      Jun 27, 2015 at 10:55am

      You know, you have refused to post a couple of cogent antipsychiatry posts, so let's see if we can't tone it down to get past the Free Press Censors. Gotta love the hypocrisy, eh?

      There are no biological tests for schizophrenia, and you would never take someone who was non-symptomatic, do any sort of brain scan and then say "sorry, you have schizophrenia, you need to take these drugs to avoid the horror!" Schizophrenia is certainly not a "brain disease," it is a set of behaviors. In the Soviet Union psychiatry was used to control political dissidents, and it is much the same here. Way back in the days of Occupy Vancouver, a fellow named Greg Renouf was writing articles that some local union hacks didn't like, one of whom was a nurse. She tried to have him committed, if memory serves.

      A diagnosis of schizophrenia tends to mean someone has behaved in a way that some authority figure deems inappropriate---that is all. It is essentially a diagnosis of criminal behaviour, except no legislature has ever made it illegal to be schizophrenic; the physicians are essentially allowed to legislate without the consent of the Lords and Commons.

      This occupation of our society by physicians must be stopped.

      Anon

      Jun 29, 2015 at 9:29pm

      There may not be a widely available test for schizophrenia, but research recently found 108 biomarkers for it. And brain scans of those with schizophrenia are very different from those without Sz. We are still in our infancy with regard to our knowledge of the brain and how it becomes sick, just like other organs can fail or become ill. Saying that Sz is a set of behaviors implies that the behaviors are chosen, yet no one chooses delusions or hallucinations. Mental illness isn't about acting different and being an outcast because of it. It is a no fault brain illness. The other dirty little secret is that untreated psychosis kills cognitive function. When we stand by and don't treat someone in psychosis who isn't capable of choosing treatment for themselves, it is like we are letting them have a heart attack, or a stroke, while we do nothing. That is cruel and malpractice. Our laws must change to reflect the reality that 50% of our seriously mentally ill won't seek treatment because quite simply, they don't think know they see sick.