Hard Questions

Information overload


 

The evening James Wu (not his real name) learned he had leukemia, he asked his nurse to please get his doctor. There was something important he had to ask her.

“I have this mole. On my back.” He squirmed anxiously. “Doctor, is it dangerous?”

James did have something dangerous – though it had nothing to do with a skin blemish he’d had his whole life. Earlier that day, I had pulled up a chair and told him we had final results from the bone marrow biopsy I had done the day before. It was unfortunately what we suspected. James had cancer. It was a type of cancer called acute lymphoblastic leukemia, a cancer of the blood.

James had said nothing. He looked down, shocked, and crestfallen. Even though we had planted the seeds early that this was likely cancer, the confirmation is always heartbreaking. It closes the door on optimism, shutting out the slim hope that it could be something else. Anything else.

I could have said more. But I waited.

I stopped talking because my experiences have mirrored what the data shows: Once a patient hears “cancer,” they often stop listening. We could go on, spelling out the next steps and treatment options. But patients usually don’t retain it. The details don’t mean anything right now.

Instead, I usually just hint at what’s to come. Most importantly, I reassure them that we are with them now, every step of the way. This will be a road we’ll walk together.

It was silent for a while. Finally, James spoke.

“OK,” he said. “So … it’s not something in my diet?”

“No. It’s a leukemia.”

“It cannot be related to stress?”

“No. You did nothing to cause this.”

For most, it’s a process. After dropping the diagnostic bomb, treatment is another conversation. Prognosis another. If I have the luxury of continuity, I try to carve the information into chunks, giving patients time to process each piece.

This felt especially salient for James, who was in his mid-30s and had never even been in a hospital before, much less dealt with a serious diagnosis. His grandparents had died of “old age,” and no one in his family had been sick. He had never interacted with the health care system in a meaningful way. Even words like chemotherapy seemed beyond him, existing in a different world from the one he lived in. Cancer was abstract.

“Would I be awake during chemotherapy?”

“Yes. Completely.”

James had a wife, a 2-year-old, and a full-time job. Watching his daughter aimlessly wander around the hospital room, I wondered, were they planning on having more children? We could get the fertility specialist to see him before starting chemotherapy.

I looked at his nightstand, where his laptop was open to data-packed spreadsheets, and I wondered what his work meant for him. Would he want to continue working through his treatment? We could have our social worker write a letter to his employer.

There would be time for all of that. Later.

I said that, for tonight, there would be nothing else. Tomorrow, we would do an ultrasound of his heart and arrange for a special IV to administer chemotherapy. Then, I would come back, and we would talk about the treatment, and what it all means, in a lot more detail.

I asked James if he had any questions right now. As expected, he said no. Until a few hours later, when I was called about his very important question.

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

Dr. Ilana Yurkiewicz

That day, looking into the terrified face of a previously healthy 30-something-year-old, I could see the future. I could see the month-long hospital stay. The chemotherapy would kill his immune system, he would get fevers, and bacteria would grow in his bloodstream. He’d get short of breath and we’d find fungus growing in his lungs. He’d take an antifungal and it would make him hallucinate. Maybe he’d spend a few days in the ICU, requiring a large catheter in his neck just to maintain his blood pressure. He would bleed; we would transfuse him with blood. He would get so many bone marrow biopsies and lumbar punctures that his skin would be marked, and he would tell each proceduralist where to go. It would be months of treatment. And then miraculously, it would go into remission. He would celebrate; his wife would cry. Maybe he’d get a bone marrow transplant; we’d find out his brother was a match, and he’d fly in from thousands of miles away. He would get graft-versus-host disease, and his skin would harden. And even after all of that, even if his bone marrow was clear of disease, he would not say he was “cured.” He would live in fear of this because he would know how likely it was to relapse. Maybe in a few months, maybe in a few years. Every cough would be a catastrophe. Every ache a fear of the worst. He would become intimately familiar with words like minimal residual disease and neutropenia, frequent the message boards, and always have a bag packed in case he needed to come back to the hospital. Everything else, from that moment on, would come in second place.

There, then, with his toddler playfully tugging at his hospital gown, I said none of that.

Instead, I examined his back. I told him his mole looked fine.

“Wow,” he breathed a long sigh of relief. “Thank you, doctor. That’s good news.”

Certain details of this story were modified slightly to protect privacy.

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

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