healing or control? |
With our recently minted doctorates in hand, we all looked smug and self assured. We were training to practice dialectal behavioral therapy--the state of the art treatment for people diagnosed with borderline personality disorder. Our mentors were elite luminaries in the field. Our offices were in the heart of Harvard Square in Cambridge Massachusetts. I felt I arrived in the liberal elite intellectual promised land.
With a deft few words, our training director swept away my smug look of superiority and taught me an enduring lesson. This post today is what I came to know in thinking about Joe's lecture that day.
People have come for treatment for hundreds--if not thousands--of years for phenomena that we currently call borderline personality disorder. People have turned to shamans, priests, friends, psychiatrists, psychologists, and others to receive treatment. Many have gotten better. Some have not.
I walked into that training room as a post-doc thinking I was learning a superior treatment. I couldn't imagine that the treatment I was providing--DBT--could ever be viewed as ridiculous, barbaric, old fashioned, or just plain weird. I could never be seen like those people we were learning about in Joe's lecture. We were better. I was better. These are modern treatments.
As many do, I failed to look forward. I failed to account for the fact that society is evolving. What one considers humane now, will be inhumane tomorrow. What are considered unquestionable facts today will be seen as antiquated examples of magical thinking tomorrow.
I will become a dinosaur one day. The way I practiced psychology will be looked at by some (if I am even remembered) as laughable--or worse.
I had this in mind yesterday morning while I was looking at vintage advertisements for Thorazine.
maintain the status quo? |
I pieced together three part time jobs. I worked overnights at a homeless shelter run by the American Red Cross and had two other jobs at an organization called H.O.M.E.S. One job was working at a group home for people with chronic mental illness. They all had been institutionalized at state hospitals, discharged onto the streets, and found their way to Ithaca. My other job at that organization was working as a resident counselor and recreation coordinator at a supervised apartment program for people with both developmental disabilities and mental illness.
The two jobs at H.O.M.E.S. required me to supervise medication administration. I was responsible for counting how many pills were in pill bottles, supervising residents talking out their dosage of medication, and assuring residents took that dosage of medication. In order to fulfill those responsibilities I was required to attend a several day training with the agency nurse.
The nurse was an older woman who liked to tell stories about her career. I liked listening--and I really wish that I liked to take notes. She was a living history about the treatment of mental illness. She talked a lot about the medications our residents were prescribed--and talked about her experiences at state hospitals when the medications were having clinical trials.
therapy or compliance? |
Medication swept some of those treatments away. Post World War II society was ushering itself into a place of modernity. Scientists were splitting the atom and harnessing god-like power. Physicians were extracting the mysteries of the brain and developing new molecules and compounds that could transform the insane into sane.
The nurse who trained us at H.O.M.E.S. remembered marveling that some individuals, who appeared totally outside of the reality that most everyone else lived in, suddenly came back into the world. The medications helped some have lives worth living.
Thorazine. A wonder drug. First securing FDA approval on March 26, 1954, Thorazine--chlorpromazine--was the first psychiatric medication. The 50s began an era in which psychotropic medications were hailed as a wonder drug to help alleviate suffering and transform hurting people into productive and happy members of society. It also was an era in which conformity was a highly desirable attribute--at least in the growing middle class white society.
Thorazine--and other phenothiazine compounds--is often seen as the greatest invention of medical psychiatry. The class of medications were the start of a wave of change that mostly ended abusive and indiscriminate use of restraints, psychosurgery, electroconvulsive therapy, and mass institutionalization of people labeled as mentally ill.
Before you get all outraged, and tell me of all the terrible abuses in psychiatry, please keep reading.
Here is the most important lesson I've learned from my mentors:
Overall, people were trying their best, with the tools on hand, within the society they lived and their era of history, to improve life.
humanizing the side effects |
Things got better. They also got worse. Thorazine was called a chemical lobotomy. Phenothiazine medications work by creating a strong blockade of dopamine receptors in the brain. In the years that have elapsed since this compound was first synthesized, we've learned that the brain doesn't really like when the dopamine receptors are blocked. In the first weeks after the medication is introduced into a body, the brain responds by dramatically increasing the amount of dopamine pumped into the synaptic cleft. In response to this increase of dopamine, the brain also dramatically increases the number of dopamine receptors.
The medications, however, are highly effective compounds. Despite there being more dopamine and more receptors to hear the message of that dopamine, nothing happens. After about three weeks of phenothiazine treatment, the dopamine system starts to break down. It appears that the neurons begin to start firing in irregular patterns or simply stop firing all together. The medications bring the whole dopamine system to a dramatic still point. (see Anatomy of an Epidemic for more)
better than past treatments |
What do you think happens when psychotic patients take phenothiazines that shut down the dopamine system? Many are no longer psychotic. Many also develop a variety of experiences including--but not limited to--constipation, low blood pressure, sedation, restlessness, inability to stop moving, sustained muscle contractions, twitching, and tardive dyskinesia. (see here, here, here, and here)
Tardive dyskinesia never goes away, even when the medication is stopped.
When I first started my career, I worked with many patients who were treated with phenothiazines. For many, their devestating hallucinations stopped. Others found no such relief.
- One woman would hear messages from the television telling her to brutalize and murder people. When she took her medication she was able to participate in her own life, free from hallucinations, and was filled with a significant amount of love for everyone and everything around her.
- A man would frequently be found hanging like a spider under tables or banging his head on sharp corners to the point where he required skin grafts. When he was started on phenothiazines he got a job that gave him a great deal of satisfaction building things.
- A gentleman, off his medications, would be frequently found naked preaching that he was the second coming of Jesus Christ. On medications he was frequently found naked preaching that he was the second coming of Jesus Christ.
- Another man, a resident of a state hospital since the early 1950s, killed several people because God told him too. Despite remaining heavily medicated he continued to kill people in the state hospital and expressed a desire to kill me so he could finally make it to the highest level of heaven. He had tardive dyskenesia, was unable to stop smacking his lips, and walked with a very slow shuffle.
- A patient, with psychosis untouched by medications, ended up dying from injuries sustained due to a command hallucination (command hallucinations are hallucinations that come with a demand for particular physical actions).
controlling outbursts or healing? |
Some actually got help. Others got more pain. Some got both help and pain. Side effects were rarely talked about and when they were, they were viewed as more of an inconvenience--and were also seen as a smaller price to pay than the costs of previous treatments that were more barbaric.
This is difficult thing to make sense of.
It's important to remember that when these medications were developed, there was no discussion on how women were oppressed. There was no word for sexism, discrimination, sexual harassment, and such. The plight of women was problem that had no name. Thorazine was an improvement. A significant improvement. It also was dangerous and damaged an unknown number of lives. Our attitudes about women, people with developmental disabilities, people of color, and anyone who was different were extremely damaging--and influenced who was considered sane and insane. We medicated people who were both insane as well as those judged to be insane because they did not conform to the standards and expectations of society.
We still do this, of course. It's just that our standards of insanity have changed, as well as our standards and expectations of what is acceptable to society.
medication as a tool to ensure cooperation |
It's easy to look back with a sense of horror. It's much more difficult to look back and understand the past through the lens of the past.
There is something even more difficult and important. We need to look closely at our present and imagine the future. Our present will someday become the past. The things I do now as a psychologist are a significant improvement on the things that were done before. Tell me what you think about this:
I believe it is imperative that while I live in the present doing the best I can, with the tools I have, within the society and historical era that contains and shapes the contours of my present, I also must look forward. I must question my own actions and strive to be more caring, more humane, and more thoughtful. We must find ways to both radically accept the present while acknowledging the future will offer something totally different that will remain unknown to us.
Be a little tender with the psychiatrists and psychologists of the past. They only knew what they knew. Someday you'll be hoping that someone will offer you that very same tenderness and understanding.
keep her calm inside and out |
modern day: keep her functional: have we really changed? |
"Some actually got help. Others got more pain. Some got both help and pain. Side effects were rarely talked about and when they were, they were viewed as more of an inconvenience--and were also seen as a smaller price to pay than the costs of previous treatments that were more barbaric."
ReplyDeleteThis is still the patient's reality. I think it's perhaps easier for a patient to say no to taking a medication. Patients today have the Internet to do research and read about other patients' experiences on medications. I've said no to starting an antipsychotic. Side effects were, in my opinion, brushed aside, downplayed, viewed as an inconvenience and small price to pay. Thankfully, I'm able to say no. And, my doctors, for the most part, respect and honor my decision. I doubt that was the case in years past.
Yes indeed, this is still the reality of many patients. I think the lucky people are those with skills at research and access to the internet for information. That's great you have a team that listens to you, for the most part, and works with you in a partnership.
DeleteI think that's still the minority--both for patients in outpatient settings and especially for patients in in-patient settings. The most vulnerable--the people most in need of help--are always the least able to consent and participate in their treatment. I'm not sure how much consent is really given in in-patient settings.
Some day I'll have to write more about the to most fundamental pieces of my ethical decision making: informed consent and the dignity of risk.
I agree. Not everyone has access to the resources I do now. And we all have different abilities to understand the extremely complex information we receive.
DeleteI had to laugh when you mentioned in-patient settings. Maybe because I was focusing on the advertisements, which today are geared toward the patient/consumer who is making a choice, I wasn't thinking of hospitalized patients. There is no choice or consent when in-patient -no need to be marketed to. You just do as you're told or you're labeled non-compliant.
When I was involuntarily held in hospital for 72-hours, the psychiatrist took me off Klonopin without telling me or making sure I understood he was taking me off of it. Then, he prescribed Abilify and said if I wanted information on the medication I could ask the nurses to print out the medication guide. I asked for and received the print out, but, I couldn't comprehend it while in crisis in the hospital.
A few days later when I was released, I was given a prescription for Abilify -a medication costing hundreds of dollars a month. The psychiatrist knew I was unemployed and had no way of paying for the medication. I was extremely agitated and moody. I'm not sure if that was me coming off Klonopin or the Abilify. I went home alone to face the effects of that psychiatrist's decisions.
I've since chosen not to take an antipsychotic. After reading the medication information online -while not in crisis- and reading other people's experiences, I'm not yet willing to accept the risks associated with those medications.
- releasing lunacy
When I had surgery I got the best advice from the pre-op nurse. "Ask a lot of questions, make a lot of noise. If you participate in your treatment, you'll get better treatment." This was great advice--and I always make a lot of noise and ask a lot of questions when I am at the doctor. I share this advice with my patients and also tell them not to do this when on a psychiatric unit.
DeleteThis of course doesn't work for psychiatric hospitalizations, many times, because questions and noise are seen as part of an illness and not part of an engaged partner in healing and health. It makes me so angry. It's just so wrong that our system treats people as if they are incompetent and unable to participate in their own lives.
I encourage folks to call their therapist, their parents, their spouse, or a friend. Find and advocate for you to speak up for you when you are hospitalized.
I'm sorry it has happened to you.
What i think is so dangerous is that so much of the experience of the patient today is the illusion of choice; believing you are giving consent to treatment without being given information on all of the risks (like side effects being glossed over) or agreeing to something because of the assumption that the doctor knows best and must have your best interests at heart. Not to mention that not complying can itself be seen as a symptom of illness or a sign of not wanting to get better. When you are made to believe you are "sick" and that this is the only help available, it is hard to see any other option. Thomas Szasz wrote that there is no such thing as voluntary psychiatric hospitalization as long as there is involuntary psychiatric hospitalization.
ReplyDeleteIt is easy to criticize past forms of treatment without looking at the context of the time. I think you're right,that in the present psychologists have to do the best they can with the knowledge they have, doing their best to not do harm, to increase freedom, and always continue to question their methods and beliefs. And, additionally, what you do...helping to make sure those who have been voiceless have a voice and aren't forgotten.
Dr. Szasz must be on a lot of people's minds -- in the last two days his name has been mentioned to me four times. Strange how things like that happen.
DeleteThanks so much for your comment, Anonymous, and especially thanks for recognizing my work in helping those who have been voiceless speak and be remembered on my blog. That means a lot to me.
Your comment made me think of a series of complicated questions that I have no easy answer for. The questions revolve around the issue of power and mental health treatment. In your physical health, it's generally acceptable practice for physicians to outline your treatment and the patient can accept or refuse treatment for their condition. Patients regularly decline treatment that saves their life because of religious, moral, or personal reasons. We don't really allow that same informed consent and dignity of risk to people who are seeking treatment for mental illness.
Perhaps a post to write on another day -- this is not the second comment that has me thinking about informed choice and dignity of risk.