Navigating Patient Vulnerability During Medical Procedures

Recently, I had my ninth (9th) procedure since my Stage IV Metastatic Breast Cancer (MBC) diagnosis in 2017; it was the third procedure involving a port and the sixth (6th) or maybe seventh (7th) location. Many details aren’t at my fingertips or at the top of my mind, but I’ve learned a lot since 2017 about myself and my body. And so I often have to ask for adjustments from the norm, something that is received in different ways by different health care workers and in different contexts. Last Thursday, as has happened to me several times, I was awake during a medical procedure. For the very first time, I felt like a piece of meat being carved up. And I didn’t like it one bit.

I think I’ve known for a good amount of time that health care workers (HCWs) need some amount of objectivity, to separate themselves from the reality of treating someone who will die on their watch, to be able to keep coming to work every day. When I actively practiced law, representing people who had been accused of abusing their children, representing the children who had been abused, representing people who were ending their marriages, etc., I had to find ways to compartmentalize, to separate myself from the experiences and emotions of the people who needed my objectivity and advice. And so intellectually, this makes sense. The experience, though, that was something really different.

I don’t remember everything that happened last Thursday, some things come in flashes and I’ve had to ask Elliot a few times for details. I prepared by medicating myself in anticipation of feeling anxious with Ativan and then was given fentanyl and Benadryl, but some things stand out.

First, the person actually taking a sharp object to cut me open to remove my port, he never introduced himself to me. In fact, by the time he entered the procedure room, I wasn’t wearing my glasses and was draped in such a way that I couldn’t see anyone and no one was in my eye line. Thinking about this very simple thing, an introduction, doesn’t feel so big, but in the moment, not being afforded this simple courtesy at the outset of an interaction (any interaction) is huge.

Second, as I was getting settled and the team was arranging all the tubes and wires and things, they brought out restraints. When I balked a little and asked questions, they explained how important it was for me not to move my arms during the procedure, especially since I wouldn’t be able to see what was going on. Intellectually, I understand the need to ensure that I (the person knowing the least about what was going on) didn’t interfere or do something that would harm myself, but in the moment, I didn’t grasp the impact of having literal handcuffs securing me to the table. Pondering this now, after the fact, I believe this act of restraint heightened feelings of vulnerability and helplessness.

Third, as the person performing the procedure began to manipulate my body, he asked questions pertaining to my medical history. I answered him. No one acknowledged that I was speaking. Again, thinking about this very simple thing, an acknowledgment doesn’t feel so big, but in the moment, not having anyone respond as I was speaking was huge. And before you begin to suspect (as I did) that I wasn’t speaking aloud, I was able to confirm after the fact that some members of the team in the room heard and understood the words I was speaking.

Fourth, while I read the consent extremely carefully and asked questions, because I wasn’t wearing my glasses (and am effectively pretty blind as a result) and was draped such that I couldn’t see, I asked what was going on. At some point, someone leaned into my line of sight and said “we’re removing your port, Mrs. Johnston.” I know to tell anyone treating my kids that it helps to reduce their anxiety to explain what was going on as it occurs and I did mean what was happening at that moment, but I did forget to say this directly for myself before the procedure and I’m not sure why. It’s scary to be so vulnerable, no matter how old you are, no matter how many procedures you endure, especially when you’ve never met the person performing it and can’t see. Cue the helplessness and vulnerability.

Fifth, during the procedure, the person performing it tossed several items on my abdomen. Thinking about where everyone was standing and from what I saw of the space as I moved from gurney to table, I suspect this was the easiest and most convenient place to discard unneeded instruments. Here’s the thing, it hurt when the items impacted my abdomen. I couldn’t see what was going on, so I couldn’t anticipate the impact; I was restrained and worried about movement affecting the procedure, so I couldn’t move. Woke up with bruises the day after the procedure, which I suspect is due to the blood thinner I’m on now. The items were small, I confirmed, they didn’t weigh much objectively, but that wasn’t what it felt like in the moment.

By the time the procedure was finished, I was sobbing.

That may not seem so monumental, but for me to break down and sob somewhere outside the privacy of my own home or a closet or my car, is pretty huge. Once the remaining staff in the room (the person who performed the port removal had already left) realized that I was crying, they truly jumped into action. They showed me the x-rays and the actual port that was removed, they answered my questions to the best of their ability and offered me water, meds, whatever I needed. The charge nurse came to talk to me too before I left and I can honestly say that the concern felt genuine and it helped.

The doctor who performed the procedure never came to talk to me.

Small things, they mean a lot. Even if patients are typically asleep on the table, when a patient is awake, adjustments are called for. Having someone paying attention to the patient experience during a procedure is a small but mighty thing — I can still remember the faces of the anesthesiologists who talked to me during each of my C-sections and the effort they made to keep me informed, that made all the difference. Courtesies remind us that we and others are human. Distance, compartmentalization, staying objective, these are important for HCWs to keep showing up; and also, human compassion is not incompatible with these things and even if a surgeon or (in this case) an interventional radiologist isn’t the most personable, there’s always someone on the team who is and can be tasked to take a few seconds to assuage a patient’s fears.

Yes, the procedure was successful. Yes, my port is outside of my body. Yes, the blood clots are no longer visible on scans. Yes, the task was completed and the standard of care complied with. But in the process, I felt like a piece of meat being carved up and that didn’t need to happen.