HOLYOKE, Mass. — Some of the voices inside Caroline White’s head have been a lifelong comfort, as protective as a favorite aunt. It was the others — “you’re nothing, they’re out to get you, to kill you” — that led her down a rabbit hole of failed treatments and over a decade of hospitalizations, therapy and medications, all aimed at silencing those internal threats.
At a support group here for so-called voice-hearers, however, she tried something radically different. She allowed other members of the group to address the voice, directly:
What is it you want?
“After I thought about it, I realized that the voice valued my safety, wanted me to be respected and better supported by others,” said Ms. White, 34, who, since that session in late 2014, has become a leader in a growing alliance of such groups, called the Hearing Voices Network, or HVN. At a time when Congress is debating measures to extend the reach of mainstream psychiatry — particularly to the severely psychotic, who often end up in prison or homeless — an alternative kind of mental health care is taking root that is very much anti-mainstream. It is largely nonmedical, focused on holistic recovery rather than symptom treatment, and increasingly accessible through an assortment of in-home services, residential centers and groups like the voices network Ms. White turned to, in which members help one another understand each voice, as a metaphor, rather than try to extinguish it.
For the first time in this country, experts say, psychiatry’s critics are mounting a sustained, broadly based effort to provide people with practical options, rather than solely alleging abuses like overmedication and involuntary restraint. “The reason these programs are proliferating now is society’s shameful neglect of the severely ill, which creates a vacuum of great need,” said Dr. Allen Frances, a professor emeritus of psychiatry at Duke University.
Dr. Chris Gordon, who directs a program with an approach to treating psychosis called Open Dialogue at Advocates in Framingham, Mass., calls the alternative approaches a “collaborative pathway to recovery and a paradigm shift in care.” The Open Dialogue approach involves a team of mental health specialists who visit homes and discuss the crisis with the affected person — without resorting to diagnostic labels or medication, at least in the beginning.
Some psychiatrists are wary, they say, given that medication can be life-changing for many people with mental problems, and rigorous research on these alternatives is scarce. I would advise anyone to be carefully evaluated by a psychiatrist with expertise in treating psychotic disorders before embarking on any such alternative programs,” said Dr. Ronald Pies, a professor of psychiatry at SUNY Upstate University, in Syracuse. “Many, though not all, patients with acute psychotic symptoms are too seriously ill to do without immediate medication, and lack the family support” that those programs generally rely on. Alternative care appears to be here to stay, however. Private donations for such programs have topped $5 million, according to Virgil Stucker, the executive director of CooperRiis, a residential treatment community in North Carolina. A recently formed nonprofit, the Foundation for Excellence in Mental Health Care, has made several grants, including $160,000 to start an Open Dialogue program at Emory University and $250,000 to study the effect of HVN groups on attendees, according to Gina Nikkel, the president and CEO of the foundation. Both programs have a long track record in Europe.
About three quarters of people put on a medication for psychosis stop taking it within 18 months because of side effects or other issues, studies suggest. Some do well on other drugs; others do not. “I was told by one psychiatrist at age 13 or 14 that if I didn’t take the meds, my brain would become more and more damaged,” said Ms. White, who began hearing voices in grade school. “Of course I believed it. And I became hopeless, because the drugs just made me feel worse.” On a recent Tuesday, Ms. White and seven others who hear voices gathered at the Holyoke Center of the Western Massachusetts Recovery Learning Community, which hosts weekly 90-minute hearing voices groups, to talk about what happens in those sessions. The group meetings themselves, guided by a person who hears voices, sometimes accompanied by a therapist, are open to family members but closed to the news media.
The culture is explicitly nonpsychiatric: No one uses the word “patient” or refers to the sessions as “treatment.” “We need to be very careful that these groups do not become medicalized in any way,” said Gail Hornstein, a professor of psychology at Mount Holyoke College and a founding figure for the American hearing voices groups, which have tripled in number over the past several years, to more than 80 groups in 21 states. Most of the people in the room had extensive experience being treated in the mainstream system. “I was told I was a ticking time bomb, that I’d never finish college, never have a job, never have kids, and always be on psychiatric medication,” said Sarah, a student at Mount Holyoke who for years has heard a voice — a child, crying — and in college started having suicidal thoughts. She was given diagnoses of borderline personality disorder and put on medications that had severe side effects. She asked that her last name not be used, to preserve her privacy. In the group, other members prompted her to listen to the child’s cries, to ask whose they were, and why the crying? Those questions led, over a period of weeks, to a recollection of a frightening experience in her childhood, and an effort to soothe the child. This altered her relationship with the voice, she said, and sometimes the child now laughs, whispers, even sings.
“That is the way it works here,” said Sarah, who is set to graduate from college with honors. “In the group, everyone’s experience is real, and they make suggestions based on what has worked for them.” Like many of the other alternative models of care, Hearing Voices Network is not explicitly anti-medication. Many people who regularly attend have prescriptions, but many have reduced dosages.
“I walked in the door on Thorazine and thought I couldn’t get better,” Marty Hadge said. “About all I could do is lie on the couch, and the doctors would say, ‘Hey, you’re doing great — you’re not getting in trouble!’” Mr. Hadge is now a group leader who trains others for that role. He no longer takes Thorazine or any other anti-psychosis medication. Not everyone benefits from airing their voices, therapists say. The pain and confusion those internal messages cause can overwhelm any effort to understand or engage. “People will come to our program because they’re determined not to be on medication,” said Dr. Gordon, the medical director of Advocates. “But that’s not always possible. The idea is to give people as many options as we can, to allow them to come up with their own self-management program.”
To do that, proponents of alternative care have much work to do. The programs are spread thin, and to scale up, they will probably have to set aside their native distrust of mainstream psychiatry to form alliances with clinics. In parts of Europe, including Britain and Denmark, such integration has occurred, with hearing voices groups and Open Dialogue-like programs widely available. In this country, there is very little collaboration. Ms. White runs a hearing voices group in the forensic psychiatry unit of a hospital in Springfield, Mass., and there is a scattering of other medical clinics that work with voices groups. But the culture gap between alternative and mainstream approaches to psychosis and other mental problem remains deep, and most psychiatrists and insurers will need to see some evidence before forming partnerships. Last month, the influential journal Psychiatric Services published the first study of the Open Dialogue program in the United States, led by Dr. Gordon and Dr. Douglas Ziedonis of the University of Massachusetts. The results are encouraging: Nine of 14 young men and women enrolled in the program for a year after a psychotic episode were still in school or working. Four are doing well without medication; the others started or continued on anti-psychosis drugs. Insurance covered about a quarter of the overall costs.
“It’s tiny, just a pilot study,” Dr. Gordon said. “But it’s a start.”