What would you do if your aging parent got a diagnosis of cancer before tests confirmed it?
In this post, I share a horrifying experience that my mother had yesterday. I share it because I want to raise awareness of what a seemingly respected medical director of a retirement community chose to do. I also want to share how I responded to my mother, the doctor and reflect how we, as adult children, can be the best possible advocate for our parents.
After 5 years of relatively good health and quality of life, my 80 year old mother went to her doctor Friday afternoon for a follow-up visit of some blood work and tests to identify the cause of her anemia. (She is in Maryland, this doctor has been her primary care doctor for many years, she visits him every 3 months, and he is the medical director of her continuing care retirement community.) The doc shared her test results, and proceeded to tell my mother that she could very well have colon cancer and by now, it could have spread throughout her body. Was my mother shocked and confused? Yes, because she had not yet had her colonscopy (her first ever!) and the diagnosis suddenly went from anemia to the big C, cancer!!!
Mom immediately called me at work to share what the doctor said. She was in a total state of shock in her apartment alone in Maryland on a Friday afternoon. I was in Indiana and my brother, in Virginia, was out of town. I asked Mom to call both her doctors and give me permission to speak with them.
I then took about 30 minutes to compose myself. Facts, emotions, scenarios were swirling in my mind. I knew I had take action (and the right action) because there were only 2 hours left to Friday afternoon! Here’s what happened next!
Mom’s wellness center called to let me know her doc would be calling me. In the meantime, I called her auto-immune specialist at Johns Hopkins to let him know the situation and as much of her diagnosis as possible. Interesting that he cut her doses of prednisone and imuran a few months back. (As a sidenote, Mom’s primary doc had responded to her that he saw no need to share her current health situation with her specialist.) I talked with the specialist’s nurse, gave her as much info as I had, and indicated I would call back in a week, to ensure all tests results were sent by primary doc.
And, then, my mom’s primary care doc called me. I know this is a long post, but please hang in there and read the rest…..I hope it may help you and your parent someday.
The doc had no idea of the impact his words had on mom.
- I began by having him repeat everything he told mom. When he stopped, I said, “and tell me what else you said to her.”
- He told me he didn’t want to withhold information from patients and thus, proceeded to present possible scenarios (of Cancer!) so she could start to absorb the shock of it. I asked, do you have clear evidence of cancer? He responded no. I let that comment sit.
- I moved on and told him that Mom sensed he lacked compassion from his manner. There was total silence again. Then the rationalization began. He said since she showed no emotion, he took that to mean that she was accepting what he said “matter of factly”. I told him that she shared with me that was not the case. She was in total shock!
- One of the worse parts for Mom was when Mom sensed he was appalled that she wanted to aggressively treat whatever the problem was. He indicated this to me as well. I told him that was a resident/patient’s prerogative to choose!!! Mom said it seemed to her that he felt like her life didn’t matter anymore.
So, how did all this end (for now)? I told the doc I wanted to be conference-called in on all her appointments and he agreed. I also told him I had contacted her specialist, and I wanted him to share all the test results with him,,,,,and to partner with him. He agreed. And, he offered to call my mother back and have a conversation, which he did. My mother said he sounded as if he was just trying to cover himself. And, thus we are also considering changing docs after the rest of the test results come in.
So, until Mom has her colonoscopy, there is no evidence of cancer. Of course, we all hope it’s not cancer. My dear sweet mother finished our conversation by asking, “if there is bad news, can we have my birthday party earlier?” I said, “of course.”
As advocates for our parents, we have to be vigilant and find a way to walk that fine line with physicians so we don’t alienate them but have them clearly listen, understand and partner with us on behalf of our parents.