The Right to Refuse Treatment

Because of my epilepsy, I have had quite a few run-ins with EMS and ER staff in various cities, states, and countries.

It is my policy to refuse treatment if someone calls an ambulance while I’m having a seizure. I have told family, friends, and partners to refrain from calling an ambulance if I have a seizure, unless I’m severely injured.

I’ve had to justify this decision to the vast majority of those I have conveyed my wishes to.

“There’s no point. If I’m not gushing blood, there is no reason for me to go to the hospital. I have epilepsy. I know this. What is the point of getting dragged to the hospital, getting MRIs, EEGs, and a bunch of other tests done–only for them to tell me I have epilepsy? That’s a bunch of debt for nothing.”

Once I lay it out like that, most reasonable people agree. Whether or not they’ll actually abide by my wishes is a different story.

It’s impossible to avoid ambulances, however. I go out, like people do, and Random Dude on the street knows nothing about my medical history or my wishes.

So, I have a seizure. I wake up, EMTs are there. Even in my post-seizure fog, I can tell them that I have epilepsy, and that I’m refusing treatment.

Here’s my problem.

EMTs do not like to be told no.

Medical personnel operate under two doctrines: informed consent, and implied consent. In my situation, medical personnel approach me under implied consent–meaning, that patients who are either unconscious, or “mentally incapacitated” would “reasonably” want to be treated. Patients in an incapacitated state are assumed to have given consent to be treated.

When EMTs first meet me, I’m either unconscious, or in the grey area of being conscious, but incapacitated. Or so they assume.

It’s a very short time after I regain consciousness that I regain my mental faculties. I have epilepsy–I’ve dealt with unconsciousness and seizures many times. I know what that post-seizure state is like. I know how to care for myself, post-seizure. I know what to expect.

I also know what to expect from EMTs. When I regain consciousness, the EMT will be helpful, sympathetic, and will do their best to care for me. The moment I state that I am refusing treatment, it all changes.

The EMT(s) will get hostile and defensive. No, they tell me, I need treatment. I need to come with them. They need to check me out, to run tests. No, I insist. I’m fine. I don’t need treatment. Next, they belittle me. I don’t know what I’m talking about. I don’t know what’s best for me. I could have severe injuries. I couldn’t possibly know if I’m injured or not. I need to come with them.

I persist, however, and eventually they relent. They make it very clear they disapprove, and act accordingly every step of the way.

This is how it has always gone.

Until last week.

Last week, I had a car accident. My epilepsy was not the cause. I did a quick self-evaluation at the scene, and I determined that I didn’t have any injuries to worry about—certainly nothing to merit the large bills that a hospital trip would result in. I told the responding officers that I didn’t need an ambulance. They disagreed. When the EMTs arrived, I answered their questions, and told them that I would be refusing treatment.

Not only did they get hostile and defensive, but they refused to accept my refusal. “You have no choice,” they told me, “You’re coming with us whether you want to or not. The only choice you have is what hospital we take you to.”

Hmm. Not mentally capable of choosing to refuse treatment, but capable enough to decide which hospital to go to. Interesting. Okay, then.

“Well, I’m not going to any religious hospital, I can tell you that right now.”

The EMT was taken aback. Once he recovered, he listed my remaining options. I chose the hospital my physician is affiliated with.

I’m rather forceful and opinionated for someone incapable of making my own medical decisions, aren’t I? I hope the EMT received the message sent in my glare.

Interestingly enough, I did not receive the treatment the EMTs insisted I needed. I wasn’t immobilized, like car accident victims are supposed to be. I wasn’t given an IV, like seizure victims usually are. They took my blood pressure and my heart rate. That was it.

It wasn’t about getting me medical treatment they thought I needed. This was a power play. As a patient, I was supposed to acquiesce. I was supposed to submit to their judgment. When I didn’t, they took it as a challenge to their authority–and they abused that authority.

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About Brittany-Ann
Brittany-Ann is a proud, self-identified feminist with fictional tendencies. She currently writes for LouisvilleKY.com and moderates at My Fault I'm Female. She smokes camels, reads Dumas, and navigates a conservative state as "one of them darn liberals."

2 Responses to The Right to Refuse Treatment

  1. Tori says:

    Erk. I’ve had sort of similar experiences, but different. I have endometriosis that manifests as both torrential bleeding and extreme pain. I’m often instructed — by my PCPs (not my current one), by people who are health care providers but not mine, by people who aren’t health care providers — that I ZOMG! Must! go to the ER to determine the causes of the pain and bleeding (and sometimes, the effects of the pain). When I point out that I already know the causes — and can monitor for myself whether the effects merit ER care — I get the, “But you must!” line repeated a lot.

    But sometimes I do end up in the ER, either because I’ve passed out (loss of consciousness is generally singular and quite brief for me) or because I’ve been literally immobilized with pain. (Fortunately, neither has happened in a good while.)

    The most typical response is that I Must get immediate treatment for the bleeding, which is often not affecting my immediate vital signs. However, if I indicate in any way that my primary issue is with pain (either by voicing it or by not being able to voice anything), I most often get admonished for drug-seeking and am told that I should “get on the Pill” instead.

  2. SeaLinc2 says:

    Yep. I also have epilepsy, and navigating emergency services (cops included, they’re such a joy) is a real dance. For awhile, it was cool because I lived in a small town. The EMTs knew me. If I had a seizure, someone would call them and they’d just sit with me until I came back to. Then they’d make sure I was mentally good, take blood pressure, and be on their way.

    Now I live in a big city and do not trust EMTs for several reasons (being trans among them). The first year I got here, I had to stop the cops from arresting a guy having a seizure. He was post, and they assumed, of course, that he was on drugs. Boy, they were cheesed off they didn’t get to run him in. He did go with EMTs because he was all out of his meds and needed a refill.

    Ah, the joys. So sorry you are doing the dance too.

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