I am grateful for having a wonderful gynecological surgeon. When it came time for a full hysterectomy, via laparoscopy, having an experienced and talented doctor with great communication skills was a huge comfort. Luckily, not only was she supportive and compassionate, but she also fought hard for insurance coverage and won that battle on my behalf. She held so much power – the power of subject matter expertise, the power of life and death during surgery, the power over my future – safe from the ovarian cancer that took my mother. I needed to, and did, trust her completely.
Prior to surgery, I let my doctor know I only wanted her to do the procedure, not any interns or fellows. She was selected due to her experience and good rating, and I wasn’t willing to be a learning opportunity for someone new to the procedure. The morning of surgery I changed into a flimsy gown and cap and sat in a pre-op waiting area with fabric curtains and reclining chairs, on call to be brought to the operating room. A parade of various medical professionals came to introduce themselves to me, starting with a medical student. I stated my position that she was not to participate in the surgical procedure but was welcome to watch. She readily agreed.
Next through were two people, in sequence, with various stages of medical training and expertise post medical school. Again, I told each of them that only my surgeon was permitted to touch me or perform any procedure on me. I said it each time with a lot of emphasis, as I was getting more and more annoyed and concerned about the involvement of additional people who I was only meeting at the last minute. My mind at the time was filled with worry about the (small) risks of the procedure and the uncertainty about what the recovery process would be like.
While nervously awaiting my procedure, I was cold, dehydrated, hungry, tired, and scared. I wasn’t going to be at the top of my game in terms of interviewing and assessment skills, to determine if I trusted these additional people as much as I trusted the surgeon I had met and researched.
I didn’t have the bandwidth to deal with these folks, so I kept to a simple and direct “no” statement regarding their participation. They each looked surprised and taken aback but said nothing in response and left quickly.
I wasn’t aware in advance that there would be anyone involved besides my surgeon, surgical nurse and anesthesiologist. I had only met and vetted the surgeon. I later came to the same realization about the anesthesiologist, another person with my life in his hands, who I first spoke to while trying not to fall off a narrow, cold metal table, under glaring lights, moments from going under the anesthesia cocktail.
Last to stop by my chair in the pre-op room was the surgical nurse. Nurses are usually the best and most compassionate medical professionals, so I felt comfortable to share with her that all these other folks were making me concerned about who was going to do the procedure, and she stated that my doctor never lets anyone else do their surgeries.
As hard as it was in the moment, I had to give up the control I typically hold on to so dearly, and temporarily put my well being in other people’s hands. If I took the time to make a bigger fuss in the moment and dig deeper, I worried that such a delay would mess up the surgical schedule for all the patients coming after me in that surgical theater. That would risk my reputation as a “good patient”. I stressed out that I would forfeit my place in line for surgeries that day and would have to delay it at least 6 months, till I was again in a period of time when I would be able to fit weeks of recovery into my schedule without jeopardizing work needs.
Therefore, on the basis of the nurse’s promise, I entered surgery and came through with no complications. After surgery, I chatted with my sister about the experience and mentioned that my only criticism was the lineup of people claiming to be part of my medical team. I let her know that it was disturbing to deal with this in such a vulnerable moment, right before going under anesthesia! She also used the same surgeon a few months earlier and explained to me that of course the surgeon had other doctors assisting in the surgery – the nature of the procedure is that it’s “two-handed” given the number of tools to operate at the same time. At the least, there would have to be a second doctor working with my primary surgeon. That was news to me and not good news.
I had set absolutely clear and unequivocal boundaries, emphatic to the point of rude, expressly refusing to consent to additional surgeons right before the procedure. Yet I was learning that at least one of them most surely did in fact participate in my surgery.
During my follow-up visit with my doctor, I brought this up and asked what happened when the other people I met told her I refused to have them touch me. She was visibly distressed – as their supervisor, she would expect to hear immediately that a patient was refusing essential consent, or that a patient was so anxious that they were rude or very agitated. No one had mentioned anything to her, a failure of the system. I was shocked to hear that. She was immediately apologetic and took responsibility that I didn’t fully understand what was necessary for laparoscopic surgery. She was angry on my behalf and told me that had she known, she would have immediately come to speak with me and provide me with the information I needed and reassurances she’d be in charge every step of the way. I was appreciative of her quick acknowledgement that what happened wasn’t ok, and her empathy and validation for how upset I was about it. But there was one more point to make.
As a violence prevention educator, I talk a lot about consent. When someone says no, and then is later unconscious, you can’t go ahead and do something anyway, on the rationale that they would never know the difference.
I had clearly said no to 3 people, telling them they could not touch me, and my no was ignored by 1 or more of them, for expediency’s sake. That felt awful. Further, I explained to my doctor that from a trauma-sensitive viewpoint, especially for survivors of prior sexual trauma, that would be felt as a particular betrayal. To her full credit, she “got it” and promised to discuss fully with those involved, including the surgical nurse who lied to me to keep things moving on schedule. It would be an important teaching moment in everyone’s training.
I know that my ability to speak up and set boundaries before surgery (despite them not being respected) and then later to have a challenging conversation with my doctor was due to my decades of teaching about setting boundaries, even when nervous or upset, or when not feeling very powerful in a given moment. (We also validate the choice not to say something.) And still, it felt like such a risk to broach this topic with my doctor – this is the person whose expertise eliminated my risk of gynecological cancer. She had just reviewed the pathology report with me – which did in fact indicate some mutating cells in the precancerous stage, now removed. This procedure may have saved my life! Alongside my gratitude for that I felt bolstered to speak up to help the next patient – hers and those of the other doctors as well. I was brave for me but for those future patients as well.
I am not sure I can describe the relief I felt getting this off my chest and getting such a positive response from my doctor. My initial belief that she was the right doctor for me, skilled on many fronts beyond how to wield a knife, was validated. It immediately shifted my experience and helped me move past the systemic failure of the communication chain. How she responded was the best-case scenario and reaffirmed for me that feeling really heard is incredibly important. How someone responds tells you a lot about a person and a relationship when you set a boundary or have a challenging conversation.
Karen Chasen