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.