Self-Advocacy: What Should Patients be Asking their Doctor, from an Expert at UChicago Medicine

We’ve probably all had that nervous feeling the night before an appointment. We want to be sure to ask the right questions and communicate our biggest concerns properly to our doctor, but how do we do this? That’s where self-advocacy comes in. Self-advocacy is made up of three parts: 1) understanding your needs, 2) knowing what kind of support helps and 3) communicating those needs to others. As a gynecologic oncologist at the University of Chicago Medicine, here are my thoughts on how to be your best “self-advocate.”

Plan and prepare questions or concerns ahead of time

It’s really easy to forget all the things you “meant” to ask when the moment arrives and the doctor enters the door. I find that patients who come into my office with notes or written concerns tend to be more satisfied at the end of their visit. And honestly, I do too! My goal is to help patients understand their individual clinical situation and empower them to be active participants in every decision-making. When there are topics that are clearly important to a patient (as in, written down), the more guided the conversation.

Ask to have a support person available during your visit

With COVID-19 restrictions in place, it has been harder to have even one family member at the visit. Always ask if you can have your support person in-person beforehand and, if the office is not allowing someone to accompany you, consider asking to have that person on speaker phone so they may help ask questions and write down important details. As a provider, I feel more reassured that I have communicated successfully when more than one person has a chance to hear my recommendations. Ask your support person to be your advocate as well. If they don’t understand the plan, it’s highly likely you don’t fully either, so encourage your support person to ask clarification questions if needed.

Communicate your own expectations

This will likely help you and your doctor have a better relationship, which is important as a patient navigates their cancer journey. Are you the kind of person who wants to know numbers? Tell your doctor you want to know percentages related to your cancer treatment and outcomes. Are you the kind of person who likes support groups or access to patients going through the same situation? Ask for recommendations. Are you the kind of person who doesn’t want bad results over the phone? Let us know. We can make a note to plan an in-person appointment for those situations. Most doctors are really receptive to feedback and want to help in any way they can. Don’t forget to use your own support person to help communicate these if necessary.

Lastly, if you don’t feel your needs are being addressed, consider asking for a second opinion. Sometimes a set of fresh eyes can help clear up a situation.

Kathryn Mills, MD, is an Assistant Professor in the Department of OBGYN, Division of Gynecologic Oncology at the University of Chicago Medicine.