Takeaway
Talking with my young patient about his cancer, he shared being most afraid of going bald. I learned that it’s important to acknowledge and validate all worries, including those that are not life-threatening.
Connecting with Patients | November 15, 2022 | 1 min read
By Lauren Rissman, MD, Advocate Childrens Hospital
My teenage patients’ parents had taken him to a doctor again and again for months because they knew something was wrong, but nobody listened. We made sure they understood it wasn’t their fault. The medical team showed the family the images, highlighting all the locations in his body the cancer had invaded. We allowed time for silence and emotional processing. The young patient seemed unfazed.
We shared the uncertainty in prognosis and the next steps to learn about what specific type of cancer he had. We paused again, allowing for time to process feelings. The parents asked about treatment options and the team said it would likely be chemotherapy. At that, our patient’s lips quivered.
“I’m going to lose my hair?” Of all the things I’d just explained, it was hair loss that was most worrisome. He hadn’t blinked when we discussed medical uncertainty, biopsies, overwhelmingly metastatic disease, or the intensive care unit. Above all, he was afraid of becoming bald. For a moment, it seemed like the least of his problems. And then I recognized that losing his hair was a signal to the rest of the world. Everything else I’d just explained was changes inside his body that only he would experience. With hair loss, he might be labeled as simply a cancer patient. There’s no easy way to hide it, unlike cancer.
“It’ll grow back,” his parent reassured him. And while they were right, I wondered if he would live to see that day. I deeply hoped he would.
I’ve learned it’s helpful to ask:
1. “What do you fear most?”
2. “What are you worried about?”
3. “What keeps you awake at night?”
Sitting with uncertainty is hard—for patients, families, and clinicians. Directly naming uncertainty can help patients and families feel seen and supported.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.