Why this experience still drives my work as a patient advocate
I underwent surgery on December 14, 2023. I was still in the hospital when I found out the regional pathology lab was hit by cyberterrorists. Their computer systems were impacted, and all automated workflows ground to a halt.
For a brief moment I was concerned that my thyroid had been lost, even though I knew that was not a rational thought. But I remained focused on recovering from surgery.
The drain was soon removed from my neck, and my voice was raspy. During thyroidectomy, the four adjacent parathyroid glands were relocated, temporarily stunned. Taking oral calcitriol and calcium helped control neurologic and muscular symptoms.
Over the next week I felt cooped up inside my house. I wanted to go out… somewhere, anywhere. It was almost Christmas, so my husband and a friend took me to an outdoor Christmas Market, at my request.
I was fine walking around, enjoying the holiday festivities. But, after 45 minutes, my legs suddenly felt like they were going to give out. There was nowhere to sit. I was escorted by my two companions—like bouncers walking a wobbly drunk—to a nearby bench. I chewed on a few TUMS from my purse. Within 20 minutes, I could feel my strength returning. Crisis averted.
Fast forward 21 days to January 4th. I was sitting on the couch with my husband, distractedly watching the TV news. I realized that I hadn’t forwarded recent blood test results to my surgeon, so I logged into the patient portal to send a message.
I saw a new results message, and clicked on it. I casually started scrolling the six page report while watching TV. But then I spotted the word “carcinoma” at the top of the screen, and I froze.
I had cancer?
Nobody should find out results this way. Yet, it happens. Frequently. The electronic patient portal is meant to streamline access to care, improve communication, and add value to the patient experience. Unfortunately, it falls flat.
Many physicians are angry that their patients find out test results before they do. Many patients are traumatized by getting results without explanations. This is not okay.
Despite having decades of medical experience, the six page pathology report was confusing. It was upsetting to get the carcinoma notification without any warning or mental preparation. I was able to quickly rally my team and get going with a treatment plan. But, the disturbing memory of how I found out is still fresh in my mind, two years later.
Our modern healthcare systems must do better. Patients deserve better. Physicians deserve better. This story guides my patient advocacy work. I can’t change the entire system, but I can try to make a difference for one person.
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Susan J. Baumgaertel, MD is an internal medicine physician who provides telemedicine medical consultation and advocacy for patients in WA state, and professional career pivot navigation support for physicians in the US. Find her at myMDadvocate.
Her book, The Menopause Menu, is an all-in-one giftbook, medical guide and recipe book for navigating menopause.
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