roadway sign in desert landPROSUMER

When Person-Centered Care takes a WRONG turn

I’ve been in treatment for severe mental illness for my entire adult life. One thing I’ve learned first-hand is how much power your treatment team has over you. Sometimes this works out well—if your treatment team listens to you, treats you like a human being, and agrees with your plan for recovery, their power can be a boon.

But if your treatment team sees you as the problem, looks down on you, or disagrees with your goals, it can have a huge negative impact on your life.

I began outpatient mental health treatment (psychotherapy and medication) after being discharged from a state hospital in upstate New York. I started in the local partial hospitalization program for the usual length of stay, two weeks.

My experience in the program was pleasant enough. The staff was friendly and skilled, and I made the progress I was after. Upon discharge from the partial program, I was referred to the hospital’s outpatient mental health program. There, I would do a seven-year stint with various therapists and psychiatrists over the better half of a decade of recovery.

During the initial phases of treatment, I made incredible gains. I had a motivating therapist and a shrewd psychiatrist. Don’t get me wrong, there were setbacks, but they were my learning moments. Because of this treatment and what I learned about myself during it, I was able to return to the classroom and, eventually, complete graduate school for social work. In this case, my team agreed with my recovery goals and focused all their energy on helping me achieve them.

After returning home and working as a social worker, I was assigned a new therapist and psychiatrist. I was sad to lose my previous team, but I knew it wasn’t unusual, especially since I had moved away from their region.

I began working for a local agency as a mobile therapist. In fact, my therapist had recommended I apply to this agency because she had also worked there earlier in her career. Initially, this was helpful to me because had similar gripes about the productivity requirements at this agency and felt overworked. I was overworked and found less and less time to make to therapy appointments every week, so I switched to every other week.

Even then, I found myself canceling from time to time when my workload was too much to drive to therapy in the middle of the workday and sit down for an extended therapy session.

My new therapist and psychiatrist were very much team players, but neither of them was on my team. My therapy appointments were littered with complaints about my attendance and speculations regarding my medication adherence.

But even if I sometimes missed meetings with them, I was stable, working, and living independently. I was baffled as to why they were treating me like I was a problem.

Both my therapy sessions and my medication monitoring sessions became downright adversarial. I began to air my concerns to my therapist and psychiatrist—I felt the quality of treatment was diminishing, and the content was becoming inappropriate. The focus on my recovery was disappearing, being replaced by their focus on me as a “problem patient.” But they didn’t listen to my concerns.

Meanwhile, I was falling asleep on the road, sometimes while driving, and could not complete the workday without periodic naps. I knew it was a direct result of beginning an intramuscular injection of antipsychotic medication, which was wreaking havoc on my system, at the request of my new psychiatrist.

I wanted my team to increase my stimulant dose to offset the sleepiness at work, but instead, my psychiatrist began to build an argument that I was starting to display signs of hypomania. I was “combative” in session, my psychiatrist said.

I explained to my psychiatrist that my “combativeness” (assertiveness is what it is called for people who don’t have a psychiatric diagnosis, and it’s generally regarded as healthy and normal) wasn’t due to mismanaged mood disorder—rather, I felt I was being stigmatized and misdiagnosed.

I had been stable for a long time, but as soon as I had a different idea on how I wanted my treatment to take its course, they saw me as non-compliant and a problem. To make matters worse, my psychiatrist began playing around with my medication to justify her hypomania claims and lowered my prescription to the point where it interfered with my capacity to perform any work at all.

At this point, I had to request an FMLA medical leave from my job as a social worker. My employer was kind enough to grant it, as long as my treatment team would sign the paperwork. But of course, my psychiatrist refused to sign off on my FMLA. She stated I was not in a crisis or acutely symptomatic (but apparently still hypomanic enough for her to lower my medication even further because she didn’t like my “tone” in session).

At this point, I sought the help of the clinic director, who was familiar with my case and worked in the community. He was unwilling to do anything. The supervisor wouldn’t change my psychiatrist or review her work to ensure my treatment wasn’t affected by her wanton dislike for me.

I understand why the director pushed back on my request. “Mental patients” have been characterized as “too demanding” and their requests for better treatment are often perceived as evidence that they are “symptomatic.” They make special requests which can interfere with clinic operations.

In my case, I was being made an example of, and I was not happy about it. The director stated he was always getting requests about changing psychiatrists and treatment teams, which he always turned down. So I was yet another example, turned down so that other patients would know not to make “special requests” in the clinic.

The director stated that he understood the precarity of my situation. After all, I had sat with this man at meetings with the county government when multiple agencies were pulled into a case review. He knew exactly who I was and the specific needs I had.

In the end, the very act of complaining to him reinforced the stigma of the demanding mental patient. I was utterly justifying their portrait of my underlying mania by the very act of complaining.

My psychiatrist’s motives were clear—she hated me and wanted to have me discharged from the clinic where I was wouldn’t be her problem anymore. And indeed, after I complained with the director, the doctor’s tone had become even more cold and dismissive. Frightened, I felt I needed to bring in a family member into session.

My parents are very supportive. They have stood behind me and the work I have invested into my mental health treatment since my discharge from the state hospital in 2008. At this time, I was updating them daily on the issues I was having at the clinic, and they were more than happy to join us for a session.

In my session with the psychiatrist, both my parents reiterated my needs and disputed the remarks of the psychiatrist, saying directly to her: “But what you’re saying isn’t what is going on with Max,” and “It doesn’t sound like you and Max are getting along or are on the same team.”

My parents were quick to notice that the psychiatrist’s issue with me was deep—that she wasn’t working for me. We were working at cross purposes. I will never forget my father pleading with her on the phone to change her decision and sign off on my FMLA. My dad may have been in the beginning stages of dementia, but even he knew how important it was that my psychiatrist sign that form.

In the end, I was told by my therapist, who was new and unfamiliar with my case, that if the psychiatrist was not willing to sign my FMLA, I could admit myself to the hospital and hope that the inpatient staff there would complete the FMLA paperwork. So, I was admitted to the hospital on the grounds that my medication was becoming increasingly ineffective and if my mental status went into further disarray, I could eventually be at serious to risk to myself.

I was discharged within 24 hours. Since I was not acutely symptomatic, the inpatient staff was quick to discharge me back to the clinic. But when I arrived at the ER attached to the clinic, I was taken into a small, unfamiliar room and told I was no longer welcome at the clinic and needed to go elsewhere for services.

No plan was in place for my ongoing injectable or oral meds. No appointment was put in place for me with another provider after this “discharge.” As a result of this mismanaged care, I had to resign from my position at work, given I had no doctor to sign off on my FMLA and was discharged into the abyss.

Later that year, after connecting myself to another provider and hurling myself at their ER, I was reconnected back to outpatient treatment. I returned to the hospital that had discharged me to nowhere and requested to meet with the psychiatrist who supervised the programs. He admitted, in no uncertain terms, the hospital was negligent in my care. He said I could complain to the county, and that the hospital would likely get a write-up, but this wouldn’t amount to much but a slap on the wrist.

Because of an adversarial relationship with my treatment team, I lost a lot of progress. My recovery process stalled, but even worse, I lost my job—doing something I found especially meaningful—because of the whims of my psychiatrist.

Given the ambiguity of psychiatric disabilities, diagnosis, and distress, I find it highly problematic that the treatment team has so much power to dismiss the opinions and experiences of their patients. I was a licensed therapist, ostensibly an expert in this field—and even my clinical input into my own treatment was tossed aside like clinical refuse.

Providers need to recognize that they should not have the final say about what is best for another human being. Their job is to support our recovery, not stymie it. Disagreements about therapy, medication, and other issues will naturally arise between provider and patient, but we need providers that listen to their patients and treat them like human beings if we are ever to rise to the level of patient-centered care.

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