The Perils of Medical Portals
What can happen when you have too many results and too little information
The first time an email from a local medical practice landed with the subject head "Your test results are available," I ignored it. I knew these were the results of blood tests a neurologist had ordered to find an explanation for the callous-like sensations I've been experiencing on the bottoms of my feet.
I also knew that whatever these labs had found, I was unlikely to understand either the numbers or the medical lingo. Better to let the results sit unopened until I met again with the neurologist in three weeks, at which time he could interpret for me.
I'm not a fan of these hackable portals that medical testing centers now routinely press on patients in order to comply with a provision in the 21st Century Cures Act that requires the prompt release of results to patients — too often before their doctors have weighed in. It's annoying enough that medical groups often change their portals, making for a confusion of log-ins and passwords.
Portals as Rabbit Holes
More disturbing, these portals feature test results that are laced with often scary-sounding jargon impenetrable to a layperson. While the ability to track an ongoing condition can be useful to patients who understand what they're looking at, those who, like me, are dealing with a new or unidentified condition can find themselves chasing down rabbit holes of needless distress.
I also knew that whatever these labs had found, I was unlikely to understand either the numbers or the medical lingo.
Back in the early 2000s when my sister, Ann, was being treated for stage 4 colon cancer, she had a habit of rushing to the hospital lab after each new set of scans to demand the results before her doctors had a chance to weigh in. Initially, Ann's insistence on accessing these sneak previews stirred in me a combination of admiration for my sister's take-charge attitude and uneasy questions about myself.
At the time, my first husband was more than a year into treatment for acute myelogenous leukemia. From day one of his treatment, we'd followed his hematologist's instructions to "get on the train and go for the ride" — in other words, take it a day at a time. So, I'd never thought to get my hands on Joe's labs. Indeed, I didn't even know that was possible. Was I remiss not to be more proactive? Were Joe and I lemmings?
My doubts evaporated when it quickly became apparent that Ann's labs were filled with information that people who lack medical training are incapable of understanding, let alone interpreting. Each time Ann leapt out ahead of her doctors, churning up days of alarmed speculation, I caught a glimpse of the anxiety Joe and I had spared each other by sticking to his hematologist's day-at-a-time playbook.
After both Joe and Ann died, certain lessons remained, among them: If you're not a doctor, don't try to interpret lab results.
After both Joe and Ann died, certain lessons remained, among them: If you're not a doctor, don't try to interpret lab results. Also, don't go on the internet searching for medical information because while there's no knowing if what you find applies to your particular circumstance, it's all but guaranteed to turn up information that will scare the living daylights out of you.
Hence, when my own lab results turned up in my inbox, I felt no hesitation letting them sit, unopened. Eight days later, a second email landed, this one also bearing the heading, "Your test results are available."
This time, I felt uncertain. While I didn't know if treatment for leukemia and colon cancer had advanced since Joe's death in 2009 and Ann's in 2010, I did know that technology had. Most of my doctors now had portals where they parked test results and appointment notes. They all not only wanted me to review this stuff; they wanted me to provide online feedback about my experience. (I don't know about you, but I find that latter bit annoying. Given how much time I usually have to cool my heels in a lobby waiting to see an overscheduled doctor, I feel I've already given them enough of my time.)
The Fear Caused by One Phrase
Though I wanted no part of this damn portal, I wasn't sure what the second email implied. Might a failure to access the site result in a cancellation of my upcoming appointment? Reluctantly, I accessed my blood lab results.
You know where this is going. Yep, there was a particular bit of medical jargon I'd never come across before. Yep, I plugged the term into Google search. Yep, I scared the bejesus out of myself. (My second husband, too.)
This one little phrase, it turned out, was linked to only one condition. A blood cancer. Not the one Joe had dealt with, but one that had abbreviated the life of a close friend's spouse.
Usually, my internist waits until day's end to return unscheduled phone calls. Not this time. A half hour later the phone rang.
Freaked out, I rushed the labs over to my internist's office and asked the receptionist to ask my doctor if I needed to consult a specialist. Usually, my internist waits until day's end to return unscheduled phone calls. Not this time. A half hour later the phone rang. "He wants you to see a hematologist," the receptionist said, and then provided a name and phone number.
Even as a fog of terror descended, clouding my brain, upsetting parallels jumped out at me with painful clarity. Joe had been dealing with a rotator cuff injury when a standard battery of blood tests in advance of surgery had turned up evidence of a blood cancer. I was dealing with my feet when a battery of blood tests suddenly pointed toward evidence of a blood cancer. Joe had received his leukemia diagnosis from a hematologist on Jan. 1. Now, when I called the hematologist's office, I learned the first open appointment was 11 days away on Rosh Hashanah. The Jewish New Year.
A day after making that appointment, the neurologist called. That second email, I now learned, had been auto sent because some of my results had required more lab time and only now were available. "I don't know what this means," he said. "You need to see a hematologist."
Waiting Out Results
Oh, joy. Now, I had two doctors urging me to see a hematologist — and 11 days to wade through before I could learn what any of this meant. I would not wish those 11 days on anybody. They were filled with worry, speculation, dark fantasy and (stupid! stupid!) time spent combing the internet for more information. But that was only about 2% of my time. The lion's share of those days was spent worrying about my daughter and how I would tell her and how I would arm her for the prospect of losing her only remaining parent.
Did I benefit from any of this? No, of course not. When I finally met with the hematologist (a very nice guy, it turned out), he pronounced the lab results "Weird," and said that while he was going to order another battery of blood tests, he was "not concerned."
I recently got the new results. The red flag reading was still there, but it had shrunk from a tiny fractional number to what the hematologist called a "smudge." He told me that he continued to see no cause for alarm. All the same, he wanted me to come back in four to six months to repeat the tests so we can "keep an eye" on the situation.
I'm fine with that. In the meantime, I plan, most definitely, to keep my eyes off any more medical portals.