The details of this case have been changed to protect patient privacy.
The page came from the emergency room: There was a 70-year-old woman with a new diagnosis of suspected leukemia. Her white blood cell count -- its normal range 4,000 to 11,000 -- was 350,000.
As the hematology fellow on call, I pulled her blood smear and examined it under the microscope. There was an abundance of large, abnormal, ugly cells. It was leukemia, though the exact subtype I didn't yet know. I would do a bone marrow biopsy to confirm the diagnosis, I thought. But now, there was something more pressing.
I hustled to the emergency room, where the woman whose blood I met first lay in a gurney. I asked her -- Do you have headaches? Blurry vision? Chest pressure? Shortness of breath? Yes, yes, yes and yes. I placed my stethoscope over her lungs and heard muffled breaths, consistent with her pulse oximeter showing a dipping oxygen.
I pulled up a chair and asked what she knew. Ms. E said she felt sick and she worried it was bad. I broke the news: Unfortunately, it looked like leukemia.
I promised we would talk a lot more about prognosis and treatment as I gathered more information over the coming days. But tonight, my goal was to lower her white blood cell count.
I explained how the cells could stick together and clog vessels leading to serious problems like trouble breathing or stroke. I was concerned she was already showing signs of the problem, called leukostasis, and to prevent these complications I wanted to do a procedure called leukapheresis. It would involve removing her blood, filtering out excess white cells, and putting her blood back in. It would require placing a central line and going to the ICU.
Her son nodded solemnly, but Ms. E just looked at me. When she spoke, her voice was resolute.
"I don't want to do something that will bankrupt me," she said.
I said nothing. "If this will bankrupt me," she continued, "I'd rather die."
I asked some questions, learned her insurance information, and then in a surreal moment was in the emergency room trying to manage a hematological emergency on a budget.
As a doctor, I hate thinking about insurance as much as my patients hate relying on it. I treat the patient, not her finances. There is nothing more frustrating than negotiating not what is medically best for my patients, but what a third party decides they deserve.
At the same time, I know the confines of financial realities mean someone's medical best interest is not always her personal best interest. I know the havoc a financial blow from a medical encounter can wreak. I know the jaw-dropping bills my patients receive when their insurance companies say no, asking them to make impossible choices. Should you sell the car, or pull the kids from day care?
Before proceeding with any medical intervention, I always discuss benefits and risks. This is standard informed consent. With Ms. E, I could easily explain the risks of placing a central line -- bleeding, infection, air embolism -- or those of leukapheresis -- fluid shifts, electrolyte imbalances, blood loss.
But I couldn't explain the financial risks because our system blinds me to them. Bizarrely, I often won't know whether my patients' insurance will cover what I did until after. How can I consent someone to an opaque, unknown hazard?
Ms. E lived in a trailer, relying on a fixed income from Social Security as her entire earnings. Living independently was most important to her. While her son offered to take her in, Ms. E declined. She would rather lose her life than lose her independence.
I said there were no guarantees but that her type of insurance usually covered this situation. After some back and forth, Ms. E took the chance. After one session of leukapheresis started to help her symptoms, I pheresed her a second time. Her lungs opened, her headache cleared and her chest pressure lifted. For the first time in weeks, she could walk across a room without collapsing from fatigue.
The treatment worked. It was satisfying.
As I write this, Ms. E is still filling out paperwork while her son is making daily phone calls to her insurance company. She is waiting to see if what saved her life will cost her everything else.
Ilana Yurkiewicz, MD, is a fellow in hematology and oncology at Stanford University. She writes the monthly column Hard Questions at Hematology News and was a previous columnist for Scientific American Blog Network. Her writing has also appeared in Undark Magazine, the New England Journal of Medicine, Aeon Magazine, Health Affairs, and STAT, and her recent long-form investigation of fragmented medical records will appear in The Best American Science and Nature Writing 2019.
This piece is part of Scope@10,000, a series of original narrative essays from writers, physicians and thinkers in honor of Stanford Medicine's Scope blog publishing 10,000 posts. Stay tuned for more.
Photo by Shutterstock
