In a couple of weeks, I may see some of you at the MIA Film Festival. I am honored to be on a panel called “Re-Thinking Psychiatry” with two esteemed colleagues. In advance of the festival, I decided to write about what has been most central in my own “re-thinking”: my basic understanding of psychosis – when a person does not share consensual reality. It has been a fundamental re-think: how do we define it? how do we understand it? when do we intervene? how do we intervene?
When you are a doctor who believes that psychosis is the external manifestation of an altered brain state that best responds to a drug, you do everything you can to persuade a person who is psychotic to take the drug. People who experience psychosis are – at least in my experience of meeting and talking to them – often distressed. I have learned that the next thing I write will seem obvious to some and provoke anger in others: It can feel negligent, even cruel, to deprive people of a drug – even one fraught with many negative effects – if this drug will reduce the suffering.
Over the past few years, I have been in an odd situation. I still understand this perspective. However, I also have a deepening appreciation of alternative views. After taking a drug, a person does not always feel “better.” This is not exactly a new insight for me. Many years ago, I knew a woman who lived with a voice. She loved him – she was convinced this was the voice of a “him” – and she never caused trouble for others. She was content with her life. One day, however, he turned on her and in that moment she sought help. She was not so much looking for someone to take the voice away but for something or someone to sooth her broken heart. The initial help she was given came in the form of a pill. The voice went away, but with it went her zest for life.
At this time, I was working in a clinic where many believed in the benefit of psychotherapy for everyone. I was encouraged to meet with this woman twice a week for a long time. To be honest, I was never of much help to her. She was not so much sad as she was just empty. She did not develop an ability to transfer the love and connection she had for the voice onto someone or even something in the corporal world. I moved away and I do not know how things turned out for her. But she was the first of many people I have known over the years who, although better on a certain metric (quieter voices, for example), was not better in the way that matters to us – an improved sense of wellbeing.
But at the same time, there have been others who do feel better after taking the drugs I prescribe. They look back on their time of psychosis and do not want it to return. They recall it as frightening and believe it disrupted the lives they want to live. I reject the notion, proposed by some on this website, that those who espouse this view do so only because they have been overly influenced by others. It appears to me that these individuals have arrived at this belief empirically: they did not like the way they felt when they were psychotic and they prefer the way they feel when they take the drugs and share a reality more in line with others.
What brings this up is my experience over the past few years in talking to people about some of the questions I struggle with in psychiatry – in particular, the long-term effects of neuroleptic drugs. As I have described previously, I have been tracking my clinical work with people who choose to taper the dose of these drugs. I have recently reviewed the results from the third year. I have tried very hard to be honest and consistent in all forums where I talk about psychiatry. However, in this forum it would be easier for me to give the headlines of that report: In general, it seems that people can engage in a shared decision-making process. Most do not abruptly stop their drugs and we can work collaboratively on a plan. Families, when invited into the process, are often supportive and helpful to me and the person taking the drugs. Those who stayed with the taper for the three years have reduced their dose by 80% and most are doing fine. On a promising note, there is a suggestion that tapering drugs is correlated with an increased return to work. This conforms to what I want to believe and I wish it was the whole story I had to tell.
But there has been another side to this. I feel an obligation to report that it has not always gone well. There have been a few people who had a return of psychotic symptoms and for a couple of them, the collaboration we had – often for many years – disappeared. It was as if I never knew the person. This has been disconcerting, disappointing, and sometimes frightening. I have worried about the person’s judgment living in a world I could not fully understand. I have felt deeply sad for the person’s family and friends who in many cases became as extruded from their lives as I did.
Although this is not intended to be primarily about what this is like for me – that is the least important issue here – it does feel different when this happens after I have been working with someone to taper the drug. When someone comes to meet me for the first time because he is hearing voices or if voices return after he has chosen on his own to stop the drugs or even if it happens while he is adhering to all of my treatment suggestions, I am more purely in the helping role. But when this happens after we have worked together trying to reduce the dose, I feel complicit. Many of the people who write or comment on MIA wonder about psychiatric thinking. Although I can only speak for myself, I can tell you this is a terrible feeling and one I might choose to avoid. Some of this is related to my fears of being judged negatively by others but some of it is just because I feel sad and worried. In some instances, people risk losing things they have worked towards for years – an apartment, a job, friendships. And the pain for family and friends is agonizing. Heartbreaking. Right now I speak periodically to a mom who lives out of state. Her adult child has cut off all contact with her and me. Her call is just a plea – Have you heard anything? Should I send him a birthday card? Can you let me know if anything happens?
I have witnessed the serious harms the drugs can cause. I once knew a man who gained so much weight that he developed diabetes with severe complications. His self-care was poor despite our best efforts to coach and assist him. He died in his thirties. I also spoke then to deeply saddened parents.
The problem is that the uncertainty is so great. I do not know who will thrive on the drugs (yes, this happens) and who will not. I do not know where the road not taken would have led. But for me, I can not think about solutions to this problem without acknowledging this side of the story – that psychosis for some can lead to a rupture on many levels that is frightening. I am not talking only about dangerous behavior, although sadly that is sometimes part of the story. I am just talking about the rupture that a belief in altered reality can bring. People make decisions based on a rubric that I and others do not understand. Even in the absence of dangerous judgments there is just a confusion and loss of connection that is challenging even for people who are more than open to finding meaning, making sense, approaching the person with the utmost respect for his point of view. When someone shuts you out, you are stuck. Family members have said to me plaintively, you can walk away but I can’t. So I try to stay, even if staying only means answering the phone every few months to tell the worried mom “no, I haven’t heard anything yet, but someone saw your son walking on the street and he seems to be OK.”
Yes, there is a deep problem in psychiatry – in all of medicine. The profit-driven business of health care – from the drug and insurance companies to guild interests – has distorted the data so badly that is is hard for me to trust the so-called “evidence base” of my profession. This problem can not be understated.
To stand up to these powerful forces, we may be better served by acknowledging the conundrum of psychosis. In my experience not all psychosis is caused by drugs or poor medical care. In most instances, the cause is elusive.
So I will continue to study alternatives to the current system. I see so many ways we could improve. My ongoing study of Finnish Open Dialogue and the related reflecting therapies and need-adapted models has only deepened my appreciation and respect for this way of working. I am intrigued by the Hearing Voices Network and will be bringing this to my clinic in a few weeks. The highlight of my recent career has been in working with peers on a crisis outreach program. I am a person prone to doubt but I have none when it comes to my belief that people with lived experience are our most important guides.
But when I try to think about changing current treatment paradigms, I have to acknowledge this: it can be extremely hard to reach people who live in non-consensual reality. While we are trying to figure out how to make the connection, scary things can happen, families suffer, the community may be frightened or just put off. I know from previous posts that some may suggest that this is a reflection of my own limitations. If I were more empathic or less connected to the medical model or better trained in other approaches, it would go better. Maybe. But there are a lot of people out there who need help. If it takes extraordinary people to be able to make these connections, I think we have a problem. Experience tells me the world is filled more with plain souls like me than with the extraordinary ones.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.