As someone who spent years advocating for my medically complex son, I’m often asked how to do it. What advocacy looks like. How to push back. The truth is, advocacy itself isn’t that complicated. At its core, it’s standing up for what you know is right, and refusing to accept an unacceptable status quo. I believe the hard part is taking up space. Challenging people and systems that aren’t used to being questioned.
A few months ago, my father-in-law Dave was hospitalized after complications from bladder cancer treatment left him unable to urinate. After weeks of unsuccessful attempts to remove a catheter, he ended up admitted.
One day, my husband and I visited with our kids in tow. While we were there, his doctor came in.
“That’s quite the crew you’ve got there,” he said, smiling. “Lucky guy.”
From his hospital bed, Dave beamed and gestured toward my boys. “Those are my grandsons,” he said proudly. “Oh, and my son Ryan and his wife Ashley.” We laughed.
“I can come back if you’d prefer privacy,” the doctor offered.
“No, it’s fine,” Dave said.
A few minutes into the conversation, I was half-listening while chasing my toddler around the room when something caught my attention. “So we’ll be stopping that medication, as it’s incompatible with your current treatment,” the doctor said.
I stopped.
“Wait,” I said. “What medication? And if you’re stopping it, does that mean he doesn’t need it anymore?”
He told me the name. “No,” he said. “It just means he can’t take it while he’s on this treatment plan.”
“Ok, so why was he on it in the first place?” I paused.
“Ashley, it’s fine,” Dave said. “He said I can’t take it anymore.”
I handed my toddler off to Dave’s wife, Corinne, and turned back. “No, it isn’t fine. If we’re stopping it, we need to understand what it was doing for you. If it was treating something important, we need another plan.”
He shifted, clearly uncomfortable. “Actually, you’re right,” his doctor said, looking back at the chart. “And I’m glad you pushed. It looks like you were on this med to help prevent a stroke, which you are at pretty high risk for. We’ll need to monitor you closely and get cardiology involved to come up with a new plan.”
He turned to my mother-in-law and started reviewing stroke symptoms and precautions for when Dave leaves the hospital, and then put a request in for a cardiologist to come by for a consult. Eventually, he left. I sat down and leaned my head back on the wall behind my seat. That was one of the easiest battles I’d ever fought with a medical professional or anyone within one of the medical, legal, or educational systems I’d dealt with during my time with Declan.
“Thank you,” Dave said quietly. “I wouldn’t have pushed on that, and I am grateful that you were here, and that you did.”
I looked up and met his eyes. “I got you,” I said.
Advocacy isn’t always complicated. Sometimes it’s being pushy and asking questions. Slowing the conversation down until you understand what is happening and why. But doing that requires something that doesn’t come naturally to everyone: the willingness to take up space. To interrupt. To question. To be ok with making someone uncomfortable.
Not every situation calls for a fight. But some do. And when they do, I’d rather be the squeaky wheel making sure that my loved ones get the care they need, than to risk a gap in the plan that can leave them vulnerable to a stroke. Or worse.
Things like this happen every day in hospitals. Medications are changed, treatments are adjusted, and the reasoning isn’t always fully explained or connected across specialties. In most cases, nothing goes wrong. But when it does, the consequences can be serious. Too often, the responsibility to catch those gaps falls to patients and families, to people who may not have the knowledge, confidence, or capacity to ask the right questions. If we want safer care, we can’t rely on patients to be the backstop. Systems need to do a better job of connecting the dots, so critical details don’t depend on who happens to be in the room.
Ashley Youngdale is a patient advocate.
