No Patience for Advocates

No patience for advocates

Dad’s trips to the doctors were increasing and getting more complicated. I was having trouble keeping track of all of them – and their guidance – and from our conversations, it seemed like Dad was as well. Not only did he visit with his oncologist and radiologist, but he also visited with a cardiologist because of a stent that was put in his heart a couple of years back to help with blood flow. He visited with his general practitioner.

Each doctor seemed to be giving him advice and medications. Mom had to buy one of those pill boxes to keep them all straight. When we talked about all of these doctors and medications one afternoon, I asked him if the multiple doctors he was speaking with are coordinating his care.

“What do you mean – coordinating my care?” he asked.

“Are they having meetings separately to discuss your care? Are they sharing with one another what medications they’re each prescribing? Are they discussing how those medications might interact with one another? When I email one doctor about my care – I cc: all of the rest of them so they know what we’re doing. I wonder if you might do that to ensure what the cardiologist is doing won’t have an impact on what the oncologist is doing.” I rattled off to him.

“I don’t email them, Sarah – I meet with them in person,” he tells me. There is a firmness in his voice that I notice, but ignore as I lean into my opinion on this.

“That’s great, Dad – but I mean after the visit. If you have questions about something you discussed or maybe you’re having a side effect – I wonder if it might be helpful for you to cc: all of the other doctors, Dad – so that they are all thinking about how their care is coordinated.” I noticed that my tone was becoming somewhat urgent. I have learned from working with the multiple doctors I work with at a really large hospital that these emails have ensured they all know who is on my case – and they all know what the current status is. I have even had two of the doctors tell me this is helpful – that I should continue this practice. My doctors all specialize in oncology care – I begin to wonder how often cardiology and oncology work together and whether Dad’s doctors even know what one another are doing with his care. I say as much aloud to Dad.

“I don’t question my doctors’ knowledge, Sarah. That sounds very disrespectful.” 

When I asked what questions he’s asked his doctors – whether he and Mom are writing them down – and whether they’re capturing the doctors’ answers, he says “No.” He doesn’t elaborate and so I tried to suggest this might be something helpful for the two of them. I share with him how surprising it has been to me to read the answers to our questions even a couple of weeks after the appointment – when I discovered there were things I missed because I was so in the moment of the discussion – adrenaline pumping through my body and clearly impacting my ability to fully hear the doctor’s message.

“Some medical centers have a position at the hospital called a ‘patient advocate’, Dad. It is their job to coordinate a patient’s care – they ensure the doctors all know what medications have been prescribed for the patient. And my understanding is they’ll join patients during their appointments with doctors to help the patient ask questions and record the doctor’s answers. Do you know if they have patient advocates at your medical center?” I pressed.

“No, Sarah. I don’t know why a medical center would need something like that. Your mom and I are doing just fine.” There was now an edge to my Dad’s voice.

“Could you ask, Dad?” I pleaded.

I don’t remember the rest of our conversation – not enough to even approximate it for this blog. What I remember is standing in my bedroom with the sun shining streaming through the windows while my Dad – who was empathetic and quick to hug and joke with me – became angry with me. His words were terse and his tone was heated.

As he spoke I realized that once again – I was trying to make decisions for him – and for his care. I was trying to tell him how to “do” cancer. What I believed were well intentioned suggestions for how he could ensure he received the best care for his heart and his cancer – came across to him as disrespectful – both of his doctors….and of him. As he very uncharacteristically leaned into his own anger – I realized I had offended him.

I lowered and softened my voice. “I am so sorry, Dad,” I said. “I was trying to help but clearly I didn’t do it well. I am so very sorry.” Once again, I realized that while we might both have cancer, our care (and our approach to it) might be radically different. And it was for each of us to choose – not for one another – but for ourselves. And I needed to be respectful of his choices – no matter how much I might disagree. What was most important is that regardless of his choices – he knew I loved and respected him.

150 150 Sarah E. McDonald