The Murky Waters of Patient-hood

Normally I write about healthcare ethics, and ethics more broadly from an outsider perspective. I write about philosophical theories, and hypotheticals, and news articles, and not about myself. This is because I’m highly privileged (white, moderately well-off despite the student thing, some minor problems with anxiety and panic attacks but no flare ups in a few years now), but I write about these things anyways because I feel like I should use that privilege for good, by listening to those with less privilege and advocating on their behalf as in accordance with their writings & speakings, & etceteras).

But today I want to talk about what it was like for me, a highly privileged, and entirely too-aware ethicist to be in a hospital setting, as a patient.

~~~

I have entered the hospital. I’m looking for day surgery on the 2nd floor, and therefore, looking for the elevator. I see a nurse going by with her cart, but I don’t ask for directions. I know how busy hospital staff are, how many things they need to do in a day, how under resourced they are. I’m early, and I have time to wander around aimlessly, so I don’t impose and ask for directions.

I find my way to a help desk, and it turns out, that is where I’m supposed to go first, not day surgery. I wait to get a chart which will then follow me around and be available to the healthcare practitioners that will be helping me today. This is waiting room #1. It’s fast.

Then I  proceed to waiting room #2, which is in day surgery. There, they take my chart from me, ask me to undress and put on a robe and booties. I’m allowed to keep on my shirt if I don’t think I will get too hot. The chair in the change room has a stain on it, and I don’t want to think too hard about what the stain is from. I try to touch nothing.

I sit back down in the waiting room, wearing only a bra under my robe. It’s about another 10 minutes before they call me. But I’m not going for my procedure yet, even though it’s been 15 minutes since my appointment was supposed to begin. I’m going to another waiting area instead, and this time, my partner can’t come with me, because there isn’t enough room in the new waiting area. I maybe buried the lede here, but I’m pretty scared and freaked out, both because I’m not sure how the procedure is going to go, and also because let’s face it, it’s pretty hard not to be scared when you’re butt-naked and in a hospital. I think about asking if my partner can come if he doesn’t sit down, or if we share a chair. It wouldn’t the first time I’ve sat on his lap in a public place, but I don’t. I’m not sure if it’s because I’m afraid to be judged about being a big old scaredy-cat or because I don’t want to be silly and a bother. I’m not sure if those two things are the same thing.

The new waiting “room” (#3, for those of you who are keeping count) is just down the hall from the old one. It’s actually just a hallway in the middle of a room full of beds with people lying on them, and doors to different procedure rooms. There’s a sign instructing us not to wander around, so that patient confidentiality for others can be maintained.  I’m not sure why they couldn’t have left me in waiting room #2. I assume this is some cost-saving/time-saving measure, but I can’t discern exactly how it saves either. The chairs here are stiff and uncomfortable in comparison to the ones in #2, and its’ cramped. The other women who sit there with me get up and move every once in a while, equally nervous, and by my estimations, far more uncomfortable both with the space and with their naked-but-for-their-robes-ness. There is a collage of cut-out comics and pictures of puppies in black and white  on the wall across from where we sit. At least they’re trying.

We start to keep track of who is going, since no one has told us how long we will be waiting, or what happens next. One woman ahead of me has been here for an hour and a half. It has been an hour since her appointment was scheduled to start. Other women whisper that they get us here an hour ahead of time to keep things running smoothly. Our time and our nakedness is a convenience for the hospital.

I think about my situation. I’m in Canada. Even though I don’t have health insurance I think about how I won’t pay for this procedure, except in my time and vulnerability. It seems a small enough price to pay in the grand scheme of things.

The nurse calls me to come in just over an hour from when my appointment was scheduled, a hour and twenty minutes from when I arrived. She checks to ask if I am okay with a medical student observing. I am. I know the importance of education, of training doctors well.

My doctor is already in the room and we get going quickly: relevant medical history, medications. For the first time in 8 months since I was first told I might have some kind of issue I get an explanation of what the issue is. She counsels me that everything will be fine, that the procedure is not as scary as the internet makes it out to be. She says I probably don’t have cancer and that if I do develop it as long as I keep coming in regularly it will be very easy to deal with- although my treatment options might be limited given my age and my sex. I reinforce that I’m okay with any treatment options since I don’t give a rat’s ass that my sex means I can bear children, I tell her that that should not be a consideration of my treatment. She makes a note in my file and says we can talk about that later, but that if it does come to some kind of sterilization that I’ll need to undergo counselling and have to sign many forms. After all, there is the problem of regret, and she says “many” doctors get sued because of it. I don’t talk about the sterilization of Indigenous women, though it is the first thing that comes to my mind.

She is kind throughout the procedure. I am glad the medical student is there because she narrates everything for his benefit, although I hope that even if he wasn’t there she might have narrated it for mine. Even though I don’t know exactly what the term “cervical dysplasia” means when she tells him where to look in the microscope, at least I’ve heard it now and can google it when I get home.

Before she takes a biopsy she asks me if I’m ready.  I say, “no,” laughing (I’ve always had a morbid sense of humor).

She says, “but you mean I can do it anyways right? I have to get consent.”

“Yes,” I confirm, “sorry.” I think about what consent means in this context, and about how this is the first time that word has been said. I don’t mean this to be negative. She really was a lovely doctor and the best part of the whole experience.

After the biopsy is done they counsel me about next steps, and make me sit down and have some Gingerale and make sure I’m not bleeding too much before they let me go back to my partner, so that we can come home. I don’t know where things go from here.

~~~

This system is good. This system means that I likely will never have any life-threatening issues, because there are good mechanisms that exist to monitor and continually test my condition (uncomfortable and time-consuming though they might be). The system means that I do not have to pick between feeding myself and getting adequate medical care. The system gave me a good doctor who seems genuinely empathetic and competent in her job and who, in the limited time available to her, did communicate with me. However, the system is also largely uncommunicative. It is excruciatingly slow when you are waiting for answers, and I still have very little idea of what happens next besides monitoring, and ??? treatments whatever those might be. It is designed for efficiency, but not for the efficiency of the patient, and certainly not for their comfort. There are time constraints, there are budget constraints, and all these things are small cracks where fear and uncertainty creep in.

Lately, I’ve been working on microethics, on the small ways that interactions with healthcare practitioners can be good for patients, can help set them more at ease, and at the very least, my doctor checked all of those boxes. This experience, however, has got me thinking about the system, and how its impersonality can destabalize a person and make them feel small and their care unimportant. It’s made me realize how communication can get lost in medical jargon and the disjointed ways that pieces move together. This disconnect meant that the first time I even realized that cancer was a possibility (not a large one, at least not yet) was when I got a letter from the cancer society 3 weeks after my family doctor had given me my initial results from my PAP smear. I realize the risk is low, but then why send out the letter at all? Why not let me know it was coming and to not be worried? It’s these things that make me realize, that as important as good doctors and good healthcare providers are, the simple lack of communication and coordination can be enough to create serious, ethically relevant gaps in care. So I guess that’s my next philosophical challenge.

What’s yours?

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