child trying to climb higher

When the Answers Are Just Out of Reach

The caller, named Barbara, was in tears, and at first it was difficult to understand what she needed – what she hoped I could help with.

“I have no voice! They don’t hear me!” Barbara repeated that phrase several times – meaning – 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. 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 her. “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!” OK. I finally understood why she had called.

After making some empathetic noises, I asked her a few questions to see if I could steer her in the right direction. “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, and has been told she needs heart surgery. But she doesn’t understand what the surgery will do for her. She also doesn’t know how she can possibly take the time for surgery because no one will be home to take care of her dog and “He’ll starve without me!” Further, they’ve provided her with details like the date of the surgery and what to expect from rehab, but she doesn’t have the ability to make the arrangements that need to be made for transportation or being away from home for some time, or other details.

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, and every day of the week, they are being backed into similar corners by the healthcare system that is, today, set up more like an assembly line than a care structure. It’s more about quantity and money than it is about helping patients. These folks are FUDGE – Fearful, Uncertain, Doubtful, and Exhausted. Sad, but true.

For Barbara, and all the other Barbaras and Benjamins, the right care is just out of reach because they lack the support system to make it work for them.

“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. They can help you get the answers you want, including pros and cons for the surgery. They can help you get a second opinion, if need be. They can help you make arrangements for your dog. They can make sure that if your bills come in, they get paid properly and for no more than a fair price. They can visit you in rehab, and help with your transition home. They can be a stand-in family member who only cares about YOU and how YOU fare through the process – and not just part of the assembly line that won’t hear you. They can help ensure YOUR voice is heard!”

Barbara was silent for a moment. I realized she was sobbing. Then, finally, “Thank God. Where can I find one of these angels? Do you know one I can talk to?” she asked.

“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 then 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 told 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!

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