Controversial movement raises questions about treatment of those ‘hearing voices’

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HearingVoicesA growing but controversial international movement raises fundamental questions about what it means to be mentally ill, reports StatNews. The question at the heart of the debate: Do patients who hear voices have the right to direct their treatment, if that means rejecting conventional therapies, such as psychiatric medication?

The voices came often: three men, mocking her. Telling her she was stupid. Urging her to kill herself. Psychiatrists diagnosed her with schizophrenia. But, Stat News reports, Rachel Waddingham now rejects that diagnosis. After more than a decade of taking medications and cycling in and out of mental hospitals, Waddingham has embraced a new way of thinking about her voices. She no longer tries to banish them with drugs, but accepts them as a part of herself. She now considers them a reflection of her feelings and experiences, signals that help her understand when and why she feels overwhelmed – rather than authorities whose commands she should follow.

The report says this approach underlies a controversial international movement that raises fundamental questions about what it means to be mentally ill. The question at the heart of the debate: Do patients who hear voices – and suffer other symptoms that psychiatrists would consider severe – have the right to direct their treatment, even if that means rejecting conventional therapies, such as psychiatric medication?

Some mainstream psychiatrists have concerns that people who are out of touch with reality and spurn treatment may pose a danger to themselves or others. But the movement, which began in the Netherlands, has spread rapidly in the past three decades. There are now “hearing voices” support groups on all five continents, and over 180 in the UK, alone, anchored by the Hearing Voices Network. The report says the idea has been slower to take hold in the US, which has a strong medical model for treating mental illness, but is gaining steam there, too.

“For me, the bottom line is to find the most effective way of treating (the voices) – if the person wants to treat them – which should always include non-medical and medical options,” said David Penn, a psychology and neuroscience professor at the University of North Carolina at Chapel Hill. Penn, who studies psycho-social treatment for schizophrenia, said tactics such as meditation, exercise, and cognitive behavioral therapy can be viable options.

The report says there are now about 90 support groups across the US, according to the Hearing Voices Network USA. Just last month, advocates of the approach held five training sessions for support group leaders. And in August, the World Hearing Voices Congress will be held at Boston University, the first time the meeting will take place in the US. Organisers are hoping for about 500 attendees, though some have expressed worries about having to apply for visas to the US, which ask about mental health status.

Many in the movement say they’re not mentally ill because their hallucinations don’t cause them distress or interfere significantly with their ability to move productively through life. They say diagnoses are too often subjective and unreliable. Indeed, the report says, some say that being labelled mentally ill – or being pushed to go on medications – has caused them more problems than the voices they hear.

The movement’s leaders are careful to acknowledge that anti-psychotics and other medications can work for some patients. But they also note that there is a trade-off between those benefits, which can be substantial, and severe and often unpleasant side effects, such as significant weight gain that can lead to diabetes. And there are questions about the long-term effectiveness of psychiatric medications.

In workshops and support groups, movement advocates try to reassure people who are frightened by the experience of hearing voices that it’s not unusual and doesn’t necessarily portend a spiral into psychosis. They offer concrete strategies for coping, including trying to set up appointments to talk to the voices at periodic intervals — and wearing headphones while doing so, so it will look to the outside world like you’re simply talking on the phone. A workshop at the World Hearing Voices Congress promises tips on negotiating alternative realities.

“For us, voices are a signal, they are something that tell you about your life,” said Dr Dirk Corstens, a psychiatrist and psychotherapist in Maastricht in the Netherlands and a leader in the movement. “You have to listen to (them). Not obey, but listen.” Many recovered voice hearers say that once they engage with the voices, their mental health improves – and the voices become nicer as well.

The report says many psychiatrists see losing touch with reality – for example, hearing voices – as a quintessential symptom of severe mental illness and drugs as the most effective treatment to keep the patients from harming themselves or others.

There is some research to support this worry: In one seminal US study of 1,410 people with schizophrenia, those who experienced hallucinations, including hearing voices that others don’t hear, were more likely to commit serious violence, though the overall likelihood of violence was still low, according to Jeffrey Swanson, a professor of psychiatry and behavioral sciences at Duke University. But Swanson said there’s “a big difference” between patients who know that the voices are only being heard by themselves and those who don’t.

Most psychiatrists these days want patients to “share in the decision-making” and come up with a personalised treatment plan, Swanson said. “At the same time,” he added, “psychiatrists are the experts in treatment that can be helpful, so they should be involved, monitor what is happening, and try to make sure patients don’t lose insight and get into serious trouble.”

How common is it to hear voices? The report says the numbers vary widely, but one review of 17 existing studies across nine countries found that, on average, about 1 in 8 people surveyed reported an experience of hearing a voice that wasn’t real. “The findings support the current movement away from pathological models of unusual experiences and towards understanding voice-hearing as occurring on a continuum in the general population,” the researchers wrote in the review.

Charles Fernyhough, a psychology professor at Durham University in the UK who studies the topic, said one theory holds that the phenomenon appears to be similar to the self-talk that everyone does. It seems a certain percentage of people don’t experience their internal monologues as being something that they themselves have produced, leading them to experience the voices as coming from another person. Voice hearing “is unusual, but it’s not in itself pathological,” Fernyhough said.

Abstract 1
Contex: Violent behavior is uncommon, yet problematic, among schizophrenia patients. The complex effects of clinical, interpersonal, and social-environmental risk factors for violence in this population are poorly understood.
Objective: To examine the prevalence and correlates of violence among schizophrenia patients living in the community by developing multivariable statistical models to assess the net effects of psychotic symptoms and other risk factors for minor and serious violence.
Design: A total of 1410 schizophrenia patients were clinically assessed and interviewed about violent behavior in the past 6 months. Data comprise baseline assessments of patients enrolled in the National Institute of Mental Health Clinical Antipsychotic Trials of Intervention Effectiveness.
Setting and Patients: Adult patients diagnosed as having schizophrenia were enrolled from 56 sites in the United States, including academic medical centers and community providers.
Main Outcome Measures: Violence was classified at 2 severity levels: minor violence, corresponding to simple assault without injury or weapon use; and serious violence, corresponding to assault resulting in injury or involving use of a lethal weapon, threat with a lethal weapon in hand, or sexual assault. A composite measure of any violence was also analyzed.
Results: The 6-month prevalence of any violence was 19.1%, with 3.6% of participants reporting serious violent behavior. Distinct, but overlapping, sets of risk factors were associated with minor and serious violence. “Positive” psychotic symptoms, such as persecutory ideation, increased the risk of minor and serious violence, while “negative” psychotic symptoms, such as social withdrawal, lowered the risk of serious violence. Minor violence was associated with co-occurring substance abuse and interpersonal and social factors. Serious violence was associated with psychotic and depressive symptoms, childhood conduct problems, and victimization.
Conclusions: Particular clusters of symptoms may increase or decrease violence risk in schizophrenia patients. Violence risk assessment and management in community-based treatment should focus on combinations of clinical and nonclinical risk factors.

Marvin S Swartz, Richard A van Dorn, Eric B Elbogen, H Ryan Wagner, Robert A Rosenheck, Scott Stroup, Jospeh P McEvoy, Jeffrey A Lieberman

Abstract 2
Background: It is increasingly understood that voice-hearing is neither a rare phenomenon experienced only by ‘psychiatric patients’ nor a meaningless symptom of a ‘mental illness’.
Aims: To estimate the prevalence of voice-hearing in the adult general population.
Methods: PsycINFO and relevant literature reviews were searched for studies of the prevalence of verbal auditory hallucinations among adults.
Results: Seventeen surveys, from nine countries, were identified. Comparisons across studies were problematic due to differences in definitions, methodologies, and cultural factors. Prevalence ranged from 0.6% to 84%, with an interquartile range (excluding the highest and lowest quartiles) of 3.1%–19.5%, and a median of 13.2%.
Conclusions: Differences in prevalence can be attributed in part to differences in definitions and methodologies, but also to true variations based on gender, ethnicity and environmental context. The findings support the current movement away from pathological models of unusual experiences and towards understanding voice-hearing as occurring on a continuum in the general population, and having meaning in relation to the voice-hearer’s life experiences.

Vanessa Beavan, John Read, Claire Cartwright

Stat News report
JAMA Psychiatry abstract
Journal of Mental Health abstract

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