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The bad old days before the Affordable Care Act
Aaron was nineteen years old. This was in the bad old days before the Affordable Care Act (ACA). What this meant was that the day he turned 18, his parents’ medical insurer dropped him from their coverage. When he was about fifteen he was treated for depression, meaning he had a "pre-existing condition." With a pre-existing condition, any future medical insurance he might find was unlikely to cover psychiatric care. By now it was clear that his depression was a forerunner to his true diagnosis, schizophrenia. This made it likely he would require life-long help for his mental illness, help that he would have to pay for out of pocket.
Often someone with a “pre-existing condition” could get around this problem by buying employer-provided insurance, which often didn’t have this prohibition. Aaron though, with schizophrenia, wasn’t able to function well enough to get or keep a job. He also couldn't concentrate well enough to stay in school where he might have gotten temporary insurance.
No job or schooling meant no insurance.
No insurance meant no provider for his treatment.
No treatment meant no medication and therefore...
No ability to go to school or to get a job and buy insurance.
In other words, his chances of getting better and being able to make a better life for himself were poor.
Today, young people can remain on their parents’ insurance until they’re 26 years old. This gives them a chance to get some higher education or get a job and get on their feet before having to find their own medical coverage. The “pre-existing condition” clause has been abolished so someone like Aaron has a much brighter future. At the time he turned 18, though, his options were limited.
It isn't widely recognized that at one time medical bills were a primary cause of bankruptcy. One accident could mean years of trying to catch up financially. I had a patient once who was a nurse. He had a bout of pneumonia that necessitated time in intensive care on a ventilator. Medical insurance was only available through full time employment and since he worked several part time jobs, none was available to him. By the time he was discharged from the hospital, he had an enormous debt, all of which he was responsible for paying. My patient knew he, at 62 years of age, would never be able to repay this. He had taken bankruptcy a couple of years before due to medical bills, so was not able to file again. Therefore, he told me, he knew he would be working to his dying day to try to pay off this debt.
Ghost patients
Aaron was a member of a small group of young people who became known as my patients who didn’t exist, my "shadow" or “ghost patients.”
He couldn't afford to be officially listed as having an appointment. Instead, he came to the front desk and asked to see my nurse, Becky. The women who staffed our front desk were wonderful people. They played along with the idea that Aaron wanted to see Becky, knowing full well that it would be me he would end up with. They cared about my patients almost as much as I did. By looking the other way, they saw to it these patients were taken care of, whether they were scheduled or not and whether they could afford it or not.
“Aaron says the pills you gave him made the voices quieter, but he’s run out of them. Plus since he ran out they’re telling him not to trust you because you’re trying to poison him. And Mrs. K is in room 1. She has to leave early because she’s got another doctor’s appointment so maybe you could see her first, get her out, then see Aaron before our next scheduled patient gets here.” Becky caught me in the narrow hallway between patient interview rooms to give me an update.
“Did you remind him he was supposed to drop by and get some more medication if he ran short?” Trying to keep anyone, and especially younger people, on medication can be difficult. Therefore, Becky and I tried to be sure we made it as easy as possible for our patients to keep taking their pills.
It is a very common theme in psychiatry that patients don’t take their medications. Actually, it isn’t limited to psychiatry, but the reasons psychiatric patients stop their medications is often different from why general medical patients stop theirs.
Don't want to always take meds
There is no question that the medications I prescribe can make people feel odd. They don’t feel “like (them)selves.” And where they may not like the way they're feeling, at least they're familiar with it. Antidepressants can cause people to feel very dulled or “flattened.” I describe it as neither up nor down but "just being there.” I tell people to let me know if this happens, that this means they're not getting the right medication for them, but sometimes they don't want to try again.
Some of my medications can cause significant sexual problems. Men may have difficulty achieving an erection or experiencing orgasm. The latter may also be a problem for women. Likewise, it can seriously reduce libido. I am quick to explain to significant others that the lack of interest my patient is showing doesn’t necessarily mean the relationship is in trouble. It may be that the medication is the culprit.
Too much or the wrong kind of medication can cause patients to complain of feeling like zombies or of being too sedated. Artists and musicians have told me that antipsychotic medications take away their “creativity” and that they choose to take nothing, even if they're hallucinating or suicidal. I do believe that most people have the right to decide what, if any, medication they will take. I also know that many will choose to take none. I always hope, though, that the consequences of that decision are something they can live with.
“So,” I said as I entered the dimly lit room where Aaron waited. I liked the rooms where I saw my patients. The walls were a warm peach color and the lights were muted, a stark contrast to the too-bright hallways and exam rooms in other parts of the clinic. “What’s been happening?”
The voices he heard took over
Aaron, as usual, sat with his hands clasped together, sitting forward on his chair and staring at the floor. “They’re telling me you’re in on it too,” he said without looking at me.
“Who?" I asked. "In on what?”
“You know, “he glanced up briefly, glaring at the watercolor of flowers hanging on the wall in front of him. “Them. About all this,” he gestured toward the large TV screen to his left.
“We’ve gone over that,” I said, walking over to the video system and pulling the plug. “That’s how I see patients in other parts of the country.” I held out my hand, the cord dangling from it. “Now you know nothing is going on, there aren’t any lights on the machine, we’re not transmitting or receiving anything.”
“Besides,” I went on, “I’m not going to let you put me in the same category as everyone else. I’m here for you when you need me and you know it. And you don't have to listen to what they say.”
Aaron had resumed looking at the floor, though sometimes I caught him turning his head slightly to the left and mouthing words I couldn’t hear.
Hallucinating again.
“You know you were happier and did more things when you were listening to me and not to those voices,” I told him, concerned that the voices would win this battle and Aaron wouldn’t return. Again, that was his right, but I also knew what a marginal existence he had when we first met. The inexorable voices. The hopelessness. Medication had changed those things.
Aaron nodded slowly but still looked away. “Yeah, but I’ve known them a lot longer than I’ve known you,” he said softly, almost a whisper.
“Yeah, and you were miserable too, weren’t you?” I had to keep pounding the point.
Becky knocked twice on the door then opened it. Reaching in, she handed me several boxes of the medication that had been of so much help to the young man in front of me. I nodded thanks.
“Look,” I said to Aaron. “Here’s a little more of those pills. When is the last time you took any?"
He shrugged his shoulders first, then looked up toward me, but still not meeting my eyes. “I think it was a couple of days ago.”
“OK, if that’s the case, there’s probably a little still in you and this stuff might work pretty quickly,” I told him. “How about taking one now then one twice a day for a few days? If you’re happier with them than without them, then maybe that means you should stay on them.”
”But what if I get addicted to them?” He asked.
“They’re not that kind of pills. Besides, if they agree with you you can just let me know when you need more,” I tried to reassure him.
I opened one of the packages, pushed a small, oval blue pill through the plastic covering it, and dropped the pill into his hand. He looked at it, but made no move to put it in his mouth.
“You told me you liked the way you felt. You told me the voices weren’t your friends. This stuff makes them go away. You owe it to yourself to feel better and you don’t owe them,” I said, referring to the voices that taunted him, ”One. Single. Thing.”
Not looking up, Aaron put the pill in his mouth and swallowed.
I glanced at my watch. The dial was facing inward so that by turning my wrist ever so slightly I could see the time. This was to keep from calling attention to the movement. I was sure I was late for the next patient, though. Aaron wasn't on the schedule. Becky had simply fit him in. I couldn’t take much more time.
“Great,” I said. “Why don’t we have you come back day after tomorrow and let me know how it’s going?”
He nodded.
“Just ask for Becky again.” I knew there were no openings in two days – there were never any openings anymore. Besides, as mentioned, he couldn’t afford an appointment anyway.
Again Aaron nodded. “They’re mad at me…and you. But they said I should at least hear you out,” he said referring to the voices, I assumed.
I held the door for him and he left, walking down the long hallway. In the waiting room the reception staff would see him leave but would all look the other way. They knew who the ghost patients were. The day the Affordable Care Act went into effect, all of my ghost patients disappeared. Now they were on their parents’ insurance. We could treat them openly and get them to a point where they could go to school or hold jobs. Before that, it was all so much more difficult.
Image of shadow person by: © Can Stock Photo Inc. / sagarkhiwal
Image pill bottle and hands by: "© Can Stock Photo Inc. / Zinkevych