Two months after meeting Mother and Daughter, I was again in the clinic when they returned. This time I acted as supervisor to the fellow, the nephrologist in training. Fellow came from the exam room to tell me about how Mother had been doing since being seen by my colleague and a different fellow at her last appointment a month prior. We sat at the computer table in the doctors’ workroom. Mother was stable and feeling OK—and taking fewer pills as recommended by the last team of providers, he told me. I was pleasantly surprised. I remembered my visit with them and how my phone conversation with Daughter ended with me feeling that I had only created mistrust and fear. But maybe I had succeeded in starting a conversation that Daughter could sit with until the next provider could carry forward. And that was good.
Mother was 90, had several other medical problems, and had decided that dialysis was not something she wanted to endure. Fellow seemed to understand that our care was no longer focused on making numbers look pretty, as they would naturally get uglier as the kidneys relinquished a tiny bit more of their responsibilities day by day, month by month. Pills and dialysis could pretty up the numbers to some degree. Mother wanted neither.
But then Fellow said something that made me see that his understanding was limited. “Her bicarbonate is now 20, so we could consider starting bicarbonate therapy.” He was technically correct in that our usual practice in the clinic was to prescribe bicarbonate tablets when the blood test for a patient not yet on dialysis dipped down to 20. Our goal was to get it to at least 22 and ideally the normal 24. This would mean at least 1 bicarbonate tablet twice a day, with most patients with advanced chronic kidney disease requiring 2 tablets twice a day to get to the magic number. If that couldn’t get us there, then dialysis alone could. Accepted opinion in the field is that correcting the bicarbonate would help maintain bone health over the long-term, over years.
But Mother didn’t have years, so what would be the point? I refrained from blurting out the first two questions that popped up in my mind like options on the Terminator display: For real? and, Is you crazy?
Instead I went with the professional-physician-in-a-teaching-environment option and asked, “And what would be your goal with that for this patient for whom the primary goal is comfort?”
“Well,” he said a bit flustered but then pulled himself into his most authoritative, this-question-is-beneath-me tone, “I would imagine our goal would ultimately be to maintain a blood pH between 7.3 and 7.4 to prevent respiratory compromise.”
“And,” he added as if he were teaching me now, “if we are not going to manage basic metabolic derangements, then we should just refer her to palliative care.”
I felt a heat come over my face with this suggestion that our care as nephrologists began and ended with the numbers. I stood and inhaled deeply.
“Really?” I asked, “and, tell me, who would you call for that?” knowing that there was no such symptom management service for patients outside the hospital who may not be quite at the level of needing or being ready for hospice care. Hospice is intended for patients in the last six months of life. Mother had been percolating along with her kidney function estimated to be between 4 and 6% for well over six months already. And Daughter just got comfortable with the notion that being less aggressive with the medications was OK.
Fellow’s mouth frowned deeply as his eyes searched for a response.
“Exactly,” I went on. “We are the palliative care services.”
I turned to walk away towards the exam room where Mother and Daughter waited for us to return. As with every patient fellows see, I would introduce myself as the supervising kidney specialist with whom the fellow had discussed the plan for their kidney care.
I paused and turned back to add, “And in this case, if our patient’s respiratory status was so compromised that she was actually feeling shortness of breath, I would think a little morphine would be a better choice than bicarbonate pills.”
Silence. He stood to follow me. I wondered if my words had gotten through to him.
As I opened the exam room door, I thought about suggesting that we simply stop checking any blood tests at all to put an end to the fear and irrational needs to act that the ugly seemed to create. But I held onto this thought too, feeling no one else was ready to stop staring.