“How Would You Like to Proceed?”: The Role of Agency in Safe Medicine

A recent visit to my dermatologist inspired me to write about the relationship between safety and agency.

We’d already had four appointments before this visit. She always asked permission before touching me. Every time, she explained what she was doing and asked what I wanted to do. She has shown me again and again that she’s safe. She hasn’t ruptured the connection. She’s conscientious and understanding, and even remembers the Patel Pause because she put a pop-up in my chart.

I had asked for a pop-up about my needs as a trauma survivor on my chart at ChristianaCare, but the Patient and Family Relations department representative told me they couldn’t do that. She told me that instead I should carry an explanatory piece of paper in my pocket at all times and hand it to practitioners, including in the ER. As if anyone in the ER is going to stop and read something a patient hands them.

My dermatologist’s approach builds support into the encounter. The hospital’s solution places the burden of sufficient care on the patient.

At my last dermatology appointment, I needed to have some spots checked in a part of my body that nobody has seen in a very long time. Even after four positive experiences with her, I was anxious about the exam. That was natural and normal due to the location and my history.

Because I understand that speaking aloud about our internal state helps us regulate, and so does sharing our difficulties, I said, “This is very difficult for me.”

My dermatologist nodded and asked, “How would you like to proceed?” That reinforced my agency, which helped me feel immediately ready to proceed.

Safety is not only a person who is kind or knowledgeable. Safety also depends on whether we have choice. Our bodies need to know: Can I say yes? Can I say no? Can I slow this down? Can I ask questions? Can I change my mind? Will my boundaries be respected?

Our nervous system is constantly assessing not just whether we are in danger, but whether we have agency. When we have choice, when our boundaries are respected, and when we can influence what happens next, our body is more likely to settle. When choice is removed or ignored, our body is more likely to move into protection.

This is one reason healthcare can be so difficult for people with trauma histories, especially after experiences of medical betrayal. The problem is often framed as anxiety within the patient when it is frequently a sensible response to environments where agency has been repeatedly taken away.

Consent is not a signature on a form, but an ongoing process of collaboration. It sounds like, “Is it okay if I touch you here?” “Would you like more information first?” “Do you want to take a break?” “How would you like to proceed?”

These are simple questions, but they change the experience of care because care feels different when it happens with us instead of to us.

 

About Shay Seaborne, CPTSD

Former tall ship sailor turned trauma awareness activist-artist Shay Seaborne, CPTSD has studied the neurobiology of fear / trauma /PTSD since 2015. She writes, speaks, teaches, and makes art to convey her experiences as well as her understanding of the neurobiology of fear, trauma theory, and principles of trauma recovery. A native of Northern Virginia, Shay settled in Delaware to sail KALMAR NYCKEL, the state’s tall ship. She wishes everyone could recognize PTSD is not a mental health problem, but a neurophysiological condition rooted in dysregulation, our mainstream culture is neuro-negative, and we need to understand we can heal ourselves and each other through awareness, understanding, and safe connection.
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