Hard Questions

Should doctors disclose preliminary results?


 

Outside the clinic room, I paced the hallway and pressed the phone to my ear, waiting for the resident to pick up.

“I have patient SB in clinic for her appointment now. I’m hoping to get preliminary results of her bone marrow biopsy.”

I had known SB well from her month-long inpatient stay on our leukemia service. She had come in with a white blood cell count through the roof – a relapse of her leukemia, 4 years out from her bone marrow transplant. It was devastating. After a few cycles of chemotherapy and a bone marrow biopsy yesterday to see if it had worked, she was here now to get her results and decide next steps.

“Hello!” I said and we hugged. Her mother and father accompanied her, sitting still with their hands folded nervously. SB had multiple complications during her hospitalization, and we went through how each was doing. Did she get her new heart medication? Did she do okay on the antibiotics? Was the rash improving? With each question, she and her parents seemed more nervous.

Dr. Ilana Yurkiewicz is a fellow at Stanford (Calif.) University.

Dr. Ilana Yurkiewicz

There was an elephant in that exam room. Asking a cancer patient in limbo if she refilled her heart medications becomes as trivial as asking her about the weather. SB and her parents were here for one thing, from which everything else was a distraction. The only question that mattered was the one splitting their world in two: Is their daughter in remission or not?

“She’s here with her parents now,” I said outside the door. “What do you think?” The resident told me he had looked at the case this morning, and it looked like 3% blasts. I smiled – anything under 5% is good, considered a remission. But the pathology resident still hadn’t reviewed the sample with his attending.

Inside the room, after exhausting all other conversation, I hesitated. Should I tell SB the preliminary results? Or should I wait for the final diagnosis?

I’d been burned before. Once, I told a patient with a new diagnosis of esophageal cancer that it was early stage. It was not. Upon additional radiology review, the surrounding lymph nodes were enlarged, and they were ultimately found to be metastases. That initial conversation – and the subsequent one, in which I had to walk back my reassurance that the cancer was contained – was seared into my mind.

I learned from it. Giving preliminary results can be dangerous. What if we say all clear and then learn days later it isn’t so? Or what if we reveal the cancer is progressing, causing despair and re-evaluation of life’s priorities, only to find out it was a false alarm? False alarms are terrifying, and false reassurance is cruel, yet all the while, excessive waiting can feel excruciating for the person whose very existence is suspended.

As hematologists and oncologists, we scroll through CT scans, and we look at slides ourselves. But we also value and depend on the expertise of our colleagues in other departments like pathology and radiology who have their own workflow. It’s a process; it’s for quality assurance that we don’t get immediate results, and that’s a good thing.

It depends on the patient, but often I find the most straightforward solution is to say exactly what is true. For some, the combination of incredibly high stakes coupled with extended wait times becomes agonizing. They might incorrectly read into unrelated, benign actions – if my pager goes off or I look at the computer screen a moment too long – as clues into something I know and am not sharing. They might be so distracted we cannot address anything else.

So I’ve walked back from my initial “do not share anything” reaction to “it’s sometimes okay” – as long as the patient understands the nuances of what preliminary results do and do not mean. The problem with my esophageal cancer patient was not that I had shared preliminary results; it was that I hadn’t framed them as such. I had simply stated the findings, portraying them as certain.

Now, I tend to break the fourth wall. I explain that it’s the resident’s read, that it isn’t final, and that it can be amended. Do you still want to know?

Most people say yes.

SB and her parents were in that boat. They had driven 3 hours to make this appointment. They didn’t want to drive home empty handed.

“It’s preliminary,” I carefully qualified.

“Okay.”

“The final results may be different.”

“Okay, yes. We understand.”

The three of them held hands. They were holding their breath.

“It looks like remission.”

SB cried. Her mother threw her arms around my neck. “You know, she broke down when you stepped out,” her father whispered to me. “She was sure it meant bad news.”

I tried to be happy for them and with them, but now I was the one holding my breath. I hoped I wouldn’t have to take it all away.

For the next 24 hours, I compulsively checked SB’s chart, hoping final results would populate that would be consistent with what I had shared.

The next day, the pathologist called me, and I called SB.

“I have the final results,” I said, followed by my favorite phrase in hematology and oncology. “I have good news.”

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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