The Critical Importance of Working with a Patient Advocate

Recently, I received a referral for a new client diagnosed with breast cancer. She had known disease in one breast, with two suspicious lesions in the other. I got involved while she was being worked up at a hospital in town.

According to her and what I observed, they were rushing her too and did not answer her questions. She is a 70-ish woman with very little family, but well educated and committed to getting the best care possible.  I went with her to see a new physician (oncologist), and she had all her questions answered and a plan laid out. She arranged to meet with the surgeon the following week to arrange a biopsy of the opposite breast, and discuss her care.

At this point, she thought it unnecessary for me to accompany her. A plan was in place, and as a capable woman, she would meet the surgeon independently. However, she asked me to be available by phone to catch what she missed.

I was in my office and available, but she never called me, as she left her phone at home, and I didn’t get to speak with the surgeon. She filled me in, and everything seemed to go according to plan. She thought she no longer needed my services but would be in touch if anything changed. When last we spoke, she would have another biopsy, get a PORT placed, and start chemotherapy before a mastectomy.

My goal as an advocate is to “teach” a client how to be their own advocate, but be available as needed.  I checked back with her, as I do with all my clients, and I am sorry I didn’t reach out sooner. She felt that the medical system failed her as nobody called her back or scheduled the biopsy or cancer treatment; she felt she wasted a potentially six weeks!

She is starting with another hospital next week, but almost from scratch, which shouldn’t be.  We know the medical system is “broken” but we need to work with what we have.  There are often “errors” on both sides, often due to miscommunication, lost telephone notes, who knows. But that is why we, as advocates, need to continue to advocate for you, to clear up all the misunderstandings, and not let you get lost in a hole. My client is an intelligent woman, but virtually nobody can handle this completely alone, and this is the result. When you receive a serious diagnosis, you are sick, and the mental stress also takes a toll.

At this point, it doesn’t matter why it happened, but she is paying the price.  The end result hopefully will be the same, a cure, but a wasted 6 or more weeks, and a lot of mental anguish.

As for me, I will continue to follow up even if a client no longer requires my services. After all, what is a quick text to check in? It can make all the difference in the world.