“Acid-base abnormalities and electrolytes.” “Pathophysiology.”
These were the words the group of ten fellows repeated over and over again when I asked the question, “Why did you go into nephrology?”
I was not surprised. The kidney is like a woman, complicated, multi-tasking, and often sensitive. Young resident doctors are drawn to all her specialized cells, her channels controlling the movement of potassium, sodium, magnesium, and more electrolytes between them, and all that can go wrong with them. She is a thing of beauty. She cannot be duplicated. At least not well.
No one came to nephrology for the overwhelming desire to deal with the months leading to her passing or the aftermath or what to do when she dies. Nor for the fall of the entire house in which she lives that often follows.
More than 100,000 people developed end-stage kidney disease every year for the last decade. The vast majority of them started dialysis. Half of dialysis patients have more than 9 bothersome symptoms. Twenty to 25% of end-stage kidney disease patients die every year. That’s worse than most cancers.
Yet my question—why did you go into nephrology—was the start to the UCSF nephrology training program’s First Ever palliative care talk. This past Tuesday. One whole hour—or more accurately, one almost hour because 7:30 in the morning is unrealistic for most to be anything short of 10 minutes late it seems.
Palliative care is intended to maximize quality of life, to anticipate, prevent, and treat suffering. It is ideally applied throughout the continuum of illness as needed. Less in the beginning. Much, much more as illness advances. Not just when the poking and prodding and chemotherapy stops—where hospice steps in. And for all illness. Not just cancer.
One would think that a specialty with a thing called “end-stage” would welcome palliative care. Embrace it. Invite it in to take its shoes off and act like its gonna stay a while. Instead we mostly turn off the porch lights and sit in the dark like we forgot to buy candy on Halloween.
It was daunting to me, my task of giving the First Ever palliative care talk. Where to begin? I was fresh from completing Harvard’s yearlong Palliative Care Education and Practice Program and eager to start using and passing on what I learned.
After weeks of agonizing—which is apparently my self-flagellating ‘process’ for damn near every presentation I must do—I landed on talking about the patient approaching end-stage kidney disease. How does one talk with that person about the inevitable? How does one talk about dialysis—the good, the bad, and the possibility it won’t add to that person’s quantity or quality of life?
I spent a lot of time on the data. After all, this was a room of doctors. And nephrologists at that. One can never go wrong with good p-value. Statistics over stories. Hard to do when the individual stories are what matter most in palliative care. I presented prognostic factors—who would be most burdened by dialysis. I presented prognostic tools—an on-line calculator that would spit out the likelihood the person in front of you would die in 1 year, in 2 years. I tried to be interactive too. Get them talking about experiences they had, about what they would say to the hypothetical patient before them.
At the end I asked them to complete an evaluation and a needs assessment. What did they think about my session and what other topics within palliative care did they want to learn more about? They loved that I tried to engage them. A bit shocking since trying to get them to talk was like pulling hair, teeth, and toenails. Equally surprising, but perhaps should not have been, was that the one thing they wanted to learn more about was ‘prognostication in end-stage kidney disease patients considering dialysis’. That got more requests than ‘when to consider withdrawing dialysis’ and almost twice as many as ‘how to manage symptoms in end-stage kidney disease patients’.
I thought prognostication was what I had just spent the last almost hour on. So either the overall 4.6 score on a 5-being best scale they gave me was inaccurate or they needed more numbers to be able to more precisely tell the person in front of them exactly what was going to happen to manage their own discomfort with the uncertainty that makes having these discussions with patients so hard we often choose not to have them at all. Maybe I’m wrong in my interpretation, but there is one thing I know for sure.
There is work to be done.