We Need to Talk About ‘Informed Consent’ in Mental Health Care

“Since involuntary action is either forced or caused by ignorance, voluntary action seems to be what had its principle in the agent himself, knowing the particulars that constitute the action.” — Aristotle, Nicomachean Ethics, 1111a24.

“It’s all about the medication.” Susan handed me a tiny paper cup with five pills in different shapes and colors. “If you don’t take it, I’ll have to call the hospital.” I’d been off meds for six days, and although I swallowed them, I became “medically non-compliant” again that weekend, and she followed through with her threat. My mom heard what Susan said and believed her so strongly that she continued to repeat the phrase “all about the meds” for years.

“You’ll only be there for a week or so.” Susan reassured me, “Actually, it’s eight business days, so two weeks at most.” I sat on a bed in the tiny ER while a doctor drew blood and took my vitals. “The nearest hospital is in Pendleton, so we had to call a transport.”

“Can’t I just drive her?” my mom asked. “It would be more comfortable for us both.” Susan gave her a tight but sympathetic smile, “Unfortunately, no. Since she is on a hospital hold, we have to have her transported.” Mom smiled in surprise when the transport team arrived, though. It was a couple she knew from somewhere, and she tried to convince me I knew them too. She was relieved not to be handing me off to strangers. Her relief was short-lived. Since it was a four-hour drive to the hospital, I was handcuffed to a chain around my waist, so my hands could be in my lap. I was bound to myself, as if I was someone from whom I could escape. My mother cried. “She isn’t a criminal!”

I tried to lean over and sleep, but couldn’t. The road was windy, and I got car sick. They took the handcuffs off as soon as we arrived, to mitigate my embarrassment, I suppose.

I was weighed, measured, strip-searched. “You need to eat more, girl!” I ignored the nurse’s comment. I ate whatever I wanted, but she didn’t need to know that. I was sent to shower in a stall with a curtain and a multi-purpose soap dispenser. Apparently, the detergent functioned as everything but toothpaste. At least no one watched me shower.

The nursing staff weighed us every time we showered. I gained weight in the first week, and by the end of my second week I weighed a bit more than in the beginning. I started to suspect something was causing this; I’d never been so hungry in my life. I finally got up the courage to ask the day-shift nurse about it.

It was Sunday, and my family was just about to head home from their weekly visit. Before I gave my mom one last hug, I stopped at the window of the nurse’s station. “Hey, Rob. Um, I was wondering, I’ve been gaining a lot of weight, and I was wondering if maybe there’s a reason for that.”

“Well, it’s winter in Eastern Oregon, so we don’t spend as much time on grounds walks as we do in the summer. And those probably don’t help,” he pointed to the box of granola bars my mom had brought for me. “You should sign up for rec group in the basement. There’s a stationary bike and a treadmill down there.” He smiled at my mom and went back to organizing the desk.

I’ve never weighed more in my life, you moron! You think one granola bar a day for two weeks is going to add that much?! But I didn’t say that. I slunk away, shoulders hunched. I pulled my hood up over my head and moved every piece of self-confidence I’d ever had to the base of my skull. I wrapped it in bubble wrap and a cotton t-shirt, and I didn’t take it back out for ten years.

When I was discharged a month later, I had doubled my weight. I didn’t recognize myself. None of my clothes fit. When I went back to college looking like a different person, none of my friends fit either. The rejection stung, but I understood the unspoken question: what happened to her? The change in my appearance was so startling that I’m sure they couldn’t help but wonder if it was only my body that was wholly different. And the question no one wanted to offend me by asking became the elephant that chased everyone out of the room.

Eli Lilly got sued. Over and over again, patients who had taken Zyprexa without being informed of the likelihood of weight gain wanted their recompense. This was mostly given out in the form of settlements in the tens of thousands of dollars, but who can buy back for me my health? More than that, who can buy back for me my agency and choice?

In the long line of companies and individuals who brought Zyprexa from concept to my pill minder, I was never told that more than 16 percent of people who took that medication gained a large amount of weight in the first year. When I accused the antipsychotics of destroying my health, skinny doctors with expensive accents told me to eat a salad.

ORS 677.097 and the associated Oregon Administrative Rules Division 114, when taken together, define the prescription of psychotropic medications as a “significant procedure” requiring that the physician obtain informed consent. But the informed consent generally covers the entire gamut of medications that might be prescribed for schizophrenia as “significant procedures of a similar class.” So when a well-meaning psychiatrist assesses my mental state and suggests a medication that might help, he or she is not required to offer me the details of the potential side effects of that specific medication, so long as I have consented to the administration of antipsychotic medications in the past.

It seems reasonable that patients who have the capacity to understand the risks and benefits of significant procedures should be adequately informed of what those are, and be a respected part of the conversation that decides whether to use them. That is why informed consent laws exist; they are more for the protection of the patient than the doctor. And if the laws could be vaguely interpreted, the physician can always go back to the basic Hippocratic Oath: first do no harm.

The assumption is that my mental stability is more important than a few pounds of weight gain, which can be dealt with later. But the decision to prioritize mental health above physical health is not one that should be taken lightly, or taken away from me.

The bigger problem is less specific: there is a sense in which the expertise of those in authority receives implicit trust. That is, after all, why we go to the doctor’s office, consult a lawyer or ask a mechanic what’s wrong with our car. No doctor can be expected to confer years of education and experience upon his or her patient in the span of a 20-minute appointment, and so we appropriately grant them a level of authority over our care. But when a physician omits unpalatable information for the sake of obtaining cooperation in a course of treatment that they believe to be beneficial, they conspire to circumvent our agency. By taking away my choice, you take away my humanity, my personhood. Moral agency is, after all, one of the things that makes humans “the rational animal.”

Sadly, it seems like this happens particularly frequently when the client has a diagnosed mental illness. There is some basis for questioning our fitness to make decisions, since many of us have exhibited poor judgment in the events leading to diagnosis and treatment. Sometimes doctors do have to make difficult decisions and take measures to keep their clients safe against their wishes. However, when a client displays the ability to understand the consequences of potential treatments, it is the responsibility of the doctor to honor the personhood of their client and communicate clearly what is at stake.

Because there is more at stake than the treatment choice.

Taking away my right to choose causes an invisible harm that takes longer to heal than it took me to lose that weight I gained: I have to learn again how to trust myself in the face of so many who didn’t. I have to learn again that I am worth more than my prognosis. And I have to learn not to judge doctors based on vocation alone, since not all of them will choose to circumvent my agency.

“That’ll gain you some weight, girl!”

My new doctor looked at me in disbelief. “Nobody told you these medications could cause weight gain?”

I shook my head, about to cry at the truth he’d finally confirmed. “Well, I’d be upset too. I’m sorry.”

“So, can I change meds now? Or taper off or something?” The heaviness of the blame placed on me for my weight gain lifted a little as I looked at my doctor as if he were Jesus and could save me. “I don’t think three days after you’ve gotten out of the hospital is a good time to mess with things.” He turned back to the scheduling program on his computer. “Does July 8th at 2 p.m. work for you?”

Follow this journey on the author’s blog.