How To Manage When Healthcare Answers Are Just Out Of Reach
Healthcare answers can be hard to come by, especially if you don’t feel like your voice is heard. Here’s a story of one patient who struggled to get the answers she needed to make informed healthcare decisions until she got help using her voice.
The caller, named Barbara, was in tears. At first it was difficult to understand what she needed. I wasn’t clear on what she hoped I could help with.
“I have no voice! They don’t hear me!” Barbara repeated that phrase several times. I could clearly hear her, so her statement made no sense to me. At least, it made no sense until I asked her what she was trying to voice, what could not be heard.
“They just won’t answer my questions,” she said. “They keep telling me what to do, but when I ask questions, they just dismiss me.”
OK. Now we were getting somewhere. “Who are they?” I asked. “Who is dismissing you?”
“All of them. The doctors, the nurses, and all the rest of them. They pretend they don’t hear me. They give me no answers. I have no voice!”
I finally understood why she had called. After expressing empathy, I asked her a few questions.
“May I ask you what kinds of questions you hope you can get answers to? What do they do when you ask your questions? Do they ignore you, or…?”
She went on to explain that she is alone, and older. She’d been told she needs heart surgery. But she didn’t understand what the surgery will do for her.
She also didn’t know how she could possibly take the time for surgery because no one would be home to take care of her dog.
“He’ll starve without me!” she cried.
Further, the providers had provided her with details like the date of the surgery and what to expect from rehab, but she didn’t feel she could make the necessary arrangements for transportation or to prepare for being away from home for some time.
Barbara is right. She has no voice. And with no voice, how can surgery or other care possibly be successful?
Barbara Isn’t Alone
The sad part is that there are thousands of Barbaras (and Benjamins) out there. Every day, people are backed into similar corners by a healthcare system that is sometimes more like an assembly line than a care structure. It’s often more about quantity and money than it is about helping patients. Those conditions leave many people in a state of FUDGE: Fearful, Uncertain, Doubtful, and Exhausted.
For Barbara, and all the other Barbaras and Benjamins, the right care is often just out of reach because they lack the right kind of support system.
“Barbara, did you know that there are people who can help you with all these things?” I asked her. “They are independent patient advocates, and their ONLY goal is to facilitate YOUR successful experience with the healthcare system. Because they are independent, and you hire them, their allegiance is only to YOU.”
I explained that an independent advocate could help her get answers including the pros and cons for the surgery. An advocate could help her get a second opinion, if need be. And an advocate could help her make arrangements for her dog. When medical bills come in, an advocates can make sure they get paid properly and at a fair price. Advocates can visit in rehab, and help with the transition home. They can be a stand-in family member who only cares about YOU and how YOU fare through the process. Most importantly, I explained that advocates can help ensure YOUR voice is heard.
Barbara was silent for a moment. I realized she was sobbing. Then, finally, she said, “Thank God. Where can I find one of these angels? Do you know one I can talk to?”
“Better than that, I know of hundreds of them. All you need to do is answer a few questions and we can narrow them down to the exact right advocate for you,” I told her. I referred her to the AdvoConnection Directory to find that angel-advocate. She was very grateful.
A few months later…
I got an email from Carolyn, the advocate Barbara had hired.
“Barbara asked me to tell you thank you for helping her find the help she needed,” Carolyn wrote to me. “She found me in AdvoConnection, and I began working with her a few days later. We got her a second opinion. She liked the second cardiologist much better than the first. He acknowledged the problems diagnosed by the first one, but suggested a different treatment, one that Barbara found was more suitable to her. Her treatment is helping, and she’s doing great!
Her dog, Samson, is adorable (photo attached) and he says thank you, too! Barbara is one of the best clients I’ve ever worked with, so I’m also appreciative.”
It was my turn for tears. THIS is why I was put on this earth: to help make these connections; to help patients, and to support the advocates who navigate them through the system. My heart is full!
Find a Health / Patient Advocate or Navigator
Learn more about AdvoConnection and The Alliance of Professional Health Advocates