Inspired by the continued existence of "ObamaCare", I wanted to muse today on how we can reduce health care costs, choosing to focus on what is commonly called schizophrenia, which is one of the most expensive conditions for the health care system. I have written previously about my attending the Hearing Voices International conference in Melbourne, Australia, and how inspiring it was. I believe schizophrenia is so expensive to manage precisely because we have completely biomedicalized people with this condition. In our prevailing biomedical story about schizophrenia, it is genetic and cannot improve and does not respond to non-pharmacological therapies (even though hundreds of research studies exist describing how people do improve with therapies that are not medicines). We know that psychological factors are important in precipitating schizophrenia. Bebbington's research group, for example, found that people who experience psychosis are 48 times more likely to have experienced child abuse when compared to the general population. A number of researchers have shown that trauma produces the same brain changes as are found more often among people diagnosed with schizophrenia. Prominent names in this field are Read, Shevlin, and Janseen. Read, in fact, developed a traumagenic neurodevelopmental model for psychosis.
What are these changes? We find irregularities in dopaminergic, serotinergic, and norepinephrine systems. We find a reveral cerebral asymmetry. We find hippocampal damage (the hippocampus is involved in transferring short term to long-term memory). We find enlargement of the ventricles (the containers for the cerebrospinal fluid that circulates through the brain to prevent the brain from sagging and getting to heavy) and some degree of cerebral atrophy. Probably we would save a lot of money if we focused on identifying children who are experiencing some degree of trauma and helping them and their families to become more resilient and less likely to participate in traumatic experiences. As Ben Franklin said, an ounce of prevention is worth a pound of cure.
At Hearing Voices, I was most impressed with psychologist, Eleanor Longdon, who had been diagnosed with schizophrenia herself, and had recovered markedly. She said, "if we could be given trust and compassion as readily as we receive drug cocktails, recovery could be more prominent." She described the process in which the world is divided into the same, normal (who we want to be) and the "Others" -- the abnormal, the Insane -- what we don't want to be. Since the Middle Ages, we have been excluding these Others as if they are contagious. Within Native American cultures of the past, refreshingly, Others were often seen as speaking in some way for the whole group. If the one is sick, it is because the group is sick, and that one takes it on his or her self to show the sickness and reflect it back to the group. Within these cultures, everyone is a stakeholder in any person's illness because that illness reflects the imbalance of the group. We have to bring the "Others" back from the cold. We have to repair this fractured world of sane vs. insane. Indigenous people often view those whom we would label as schizophrenic as having important messages to deliver to the larger group and listen carefully to what the person says, so they can decipher those messages. The experience has meaning and purpose even if that meaning and purpose is not immediately obvious. What people who are having psychotic experiences say, requires hearing. The presence of people who are deeply disturbed indicates that our larger groups are deeply disturbed.
Of course, child abuse and trauma is deeply disturbing and we are a society in which too much of that clearly exists. However, once the horse is out of the barn, and we have a person who is having a psychotic experience, what should we do? What we currently do that is so expensive is to manage that person through the lens of a pessimistic, paternalistic, maintenance model in which we aim to minimize risk of any future psychotic event. We aim for social control, for isolation of the individual from the rest of society. We take away rights and deny privileges. The system is professionally led. Where should we go? Eleanor advocated an approach that is Recovery driven in which trust, choice, and partnership are featured and valued. We have empathy and support people's rights to be different. We work on social inclusion of those who are annoying or different. We engage in advocacy and collaboration in finding ways for people to suffer less.
People with schizophrenia are expensive because hospitalizations and medications. We can actually minimize both. In our practice in Brattleboro, Vermont, we aim for both. We use the lowest dose of medication that will manage symptoms, and often find out that this dose is no medication. We do whatever we can to prevent hospitalization, for that seems to set people further back than merely having an exacerbation of their psychosis. I have some ideas to explain this. Symptoms emerge when life overwhelms coping bolstered by social support and/or medications. A resurgence of symptoms is not a sign that "the medication is not working", as is frequently assumed. It's a sign that life has become overwhelming. Often a break from that sense of being overwhelmed is enough for coping to resume. Medication changes are often unnecessary and potentially damaging. When people are overwhelmed and can't cope and are becoming more psychotic, when possible (safety always comes first), we manage them with haloperidol and lorazepam, the same drugs they would get acutely in the hospital. This almost always helps them to sleep and when they awaken, life often seems much better. We see people daily or even several times a day when they are in an acute state. We wish we had a "safe house" where they could go to be with people, but that doesn't exist yet to our knowledge. We are looking for safe alternatives to the psychiatric system.
When people go to the hospital, they become immersed in the story that they have a relatively intransigent, hopeless chronic disease and that they are defective. We promote the story that they have been doing relatively well, life has overwhelmed them, and we can get on top of it again. We can push back against the forces that are upsetting harmony and balance and get things back on track. Sometimes that involves increasing medication, but definitely not always. Sometimes it just involves a short course of haloperidol and lorazepam in addition to whatever else they are or are not taking, just to get through the crisis.
How we see ourselves is crucial. If I see you as a valiant warrior who has temporarily been overcome by the stress of battle and in need of some rest and recuperation before being returned to the fray, that's really different from someone else seeing you as chronically mentally ill, defective, unable to recover, and just in need of higher medication.
Eleanor Longdon spoke about "the making of a schizophrenic" in telling the story of what happened to her. She wrote about her sexual, physical, and emotional abuse in childcare beginning at age 3. She described her lack of protection, her inability to escape, the denial that surrounded her, and the sense of betrayal by the adults who were supposed to care for her and protect her. This kind of powerlessness coupled with collective denial had the effect of promoting hearing voices, self-injury, dissociation, and "unusual beliefs". She described how the past began to leak out when she started University. The pressures there led to her eventual emotional breakdown. The trauma of her acute care admission to hospital was even more profound and significant. She described how the psychiatric care system did nothing to help her but merely added insult to injury. They couldn't accept the reality of her experiences, insisting on only a biological defect story. They medicated her and warehoused her. She was told that her memories of abuse were but further signs of her illness. She found herself too tired to stay awake and too restless to sleep.
Eleanor described how positive it was that her mother never gave up on her. Psychiatry made her feel helpless and hopeless. Eleanor talked about how frightening some of her voices were. She said, "we can listen to the voices and console them or lock them in a side room in hope that they calm down. " She described the importance of honoring the voices for the role they played in her survival. She told how a transformation occurred when she began to listen to voices who were initially, extremely negative. As she listened, they calmed and became more positive.
Eleanor described how 13% of so-called normal people hear voices, but only 1% of people are diagnosed with schizophrenia. Only distressed voice hearers come to clinical attention. Non-distressed voice hearers are more likely to engage with their voices to develop coherent and meaningful explanations for them. She published this in a scientific paper with A. Madill and M.G. Waterman called Dissociation Trauma and the Role of Lived Experience: Toward a New Conceptualization of Voice Hearing. She told how our current model circles from relapse to crisis to denial to insight to maintenance. In her recovery model, crisis leads to acknowledgement to inight to recovery and to growth. She spoke about the three stages of recovery being (1) establishing safety, (2) mourning for what has been lost, and (3) reconnecting with community and society to create a positive future. Survivors need to be the authors of their own recovery process
How much money could we save if we took Eleanor's recommendations? That's what we need to explore further!