“A year before the beaver incident [a patient portal message stating “diffuse metastasis to the lungs” while staring at a giant beaver statue in a Buc-ee’s parking lot], I had undergone magnetic resonance imaging (MRI) of my cervical spine. My doctor read the impression and assured me everything was fine. Yet buried deep in the radiology report, not in the impression, but in the dense paragraph nobody reads, was “multiple thyroid nodules, likely nonmalignant.” This incidental finding was never mentioned in the impression or by my doctor. In fairness, I likely would have glossed over it with a patient too.
Two months later I looked up my MRI results in the portal and noted the thyroid nodules. I mentally placed “call endocrinology” on my ever-expanding to-do list. It promptly got buried. Fast forward 6 months. I wake up and feel a lump on my neck. I went to the mirror thinking, “Is this one of those thyroid nodules from the MRI?” I stared at my reflection, reassuring myself it wasn’t a lump; it was just a shadow.
[..] When I called for an endocrinology appointment, I was told a patient just canceled and they had an opening later that day. At the appointment, the requisite laboratory tests and ultrasound were ordered. The endocrinologist agreed with my thinking—likely nothing to worry about. I left feeling reassured.
The next day, I was one of several faculty members at a research workshop. During a break I checked my phone—there was a portal message. The ultrasound result was back. “1.2-cm mass with calcifications suspicious for malignancy. Recommend biopsy.” My division chief saw the look of panic on my face as I excused myself. I cried in the bathroom for an hour.
As I tried to compose myself, I sent a portal message to my endocrinologist asking for a phone call. I realized after I hit send that the message would likely be viewed at the same time as the imaging result. Or worse, it and other unnecessary messages like it, would clog up the inbox delaying the viewing of my result. So I called the clinic. The receptionist told me the nurse would call me back when she could.
I felt lost. I needed to talk to someone. I called my friend, the one who made the slightly horrified face at my lump. She was a breast cancer survivor, and I needed her wisdom. She shared the story of her diagnosis and empathized with my worry. After we spoke, I calmed enough to return to the workshop. [..]
After the workshop concluded, my division chief pulled me aside and asked what was wrong. I couldn’t hide the tears as I told her about my imaging results. Before I could say another word, she was on the phone with the endocrinology division chief. Within minutes, I had an appointment later that week with the local thyroid cancer expert.
In that moment, I understood that portal communication creates a 2-tiered system: those with medical connections get immediate human interpretation and guidance, whereas everyone else gets raw, uncontextualized data dumps. The very people who most need navigational support, those without medical training or professional networks, are often left to decode devastating news alone.
[..] Five days after I received the radioactive iodine treatment, I drove 4 hours back to the hospital for my follow-up scan. I was anxious to make sure the treatment was effective. After the scan, I looked at the image on the screen, mock-wiped my brow, looked at the technician, and said, “Whew! Thank goodness. No metastasis.” I had no idea how to read a radioiodine scan, but the dots were so evenly spread in the lungs, I was sure it had to be benign.
This is how I found myself alone at a famous highway rest stop with 3 hours to go until I reached my destination. I frantically Googled prognosis information on my phone, wishing I’d brought my laptop. For the first time, I truly understood the patients who show up to the clinic clutching printouts from internet searches asking, “Does this mean I’m dying?”
On what seemed like the longest drive of my life, I made the decision not to tell anyone about the imaging results until I had a plan from my endocrinologist. The uncertainty had me so unsettled that I didn’t want to do that to my loved ones too. Why couldn’t the portal have waited until after my doctor had spoken to me?
Once I arrived, I grabbed my computer and went down the internet rabbit hole for hours. Ten-year survival for lung metastasis with my tumor size and subtype could be as low as 30%. To cope, I sat on the cold deserted beach wrapped in blankets and making a bucket list. I kept coming back to my geriatrician-esque decades-long wish to have purple hair when I retired—like the sophisticated older women who overtreat their grays. But sitting there in the cold, I realized I may never have the opportunity to retire…or even get old.
It took 5 days to hear from my physician, well within our hospital’s 7-day policy to report abnormal results. But that was 5 days of being in a portal-induced tailspin with no human contact and thinking I was going to die.
During those endless days, I kept thinking about the stark contrast between the portal method of breaking bad news and the evidence-based SPIKES (Setting, Perception, Invitation, Knowledge, Emotions, Summary) model that I teach learners. The portal had delivered devastating news with anti-SPIKES precision: wrong Setting (Buc’ees), no Perception check, no Invitation to receive bad news, just raw Knowledge dropped without Emotional support or Summary of next steps.
When I finally returned to work, I still thought I was going to die, and I still had not told anyone. That afternoon I was precepting fellows in clinic when my doctor called. He started with the exact same model I teach: “Do you have time to talk? How have you been feeling? I want to go over your results.” Everything the portal was not.
It turns out there was no lung metastasis; the scan was misinterpreted. I wasn’t going to die. I was in physical and chemical remission, a completely different ball game.
I’m still working. I’m still alive. And I still have purple hair. But I’ll never forget what it felt like to learn that I might be dying next to a giant smiling beaver. It wasn’t just the wrong place; it broke every principle about effectively delivering bad news.
We can do better. Every time we design digital health tools, we should ask: Does this follow the same communication principles we would use in person? If we wouldn’t hand someone devastating news in a parking lot without context, why do patient portals do exactly that?”
Full editorial, BB Powers, JAMA, 2025.7.29