I’ve written a couple of times recently about some healthcare misadventures. The first story involved a delay in care due to COVID-related office shutdowns and the subsequent fallout when a close friend of mine ended up with an abnormal cervical cancer screening test. A couple of weeks later, I mentioned a glitchy pathology results interface that failed to send out results in a timely fashion, leading to delays in notifying patients of their results and subsequent delays in follow up for abnormal findings. I had the physician’s perspective for that one, feeling my colleague’s angst as she had to notify her patients of their delayed results. I also felt her frustration at her healthcare IT team’s poor management of the situation and the potential impact on the patients whose results were delayed.
I had hoped to not encounter any further stories like these in 2020, because heaven knows we’ve had enough stress, challenges, and outright disasters this year. Unfortunately for my friend the patient, her story has continued, and not in a good way. Although we’ve been talking about it on a daily basis in text messages, emails, and screenshots of her MyChart account, she has given me permission to write about the episode as a cohesive story.
Although I’m glad that I’ve been able to provide support and help her navigate the system, the reality of this is that none of it should have happened, and there should have been better systems in place to protect the patient.
Following the initial abnormal test, she went through an office-based biopsy procedure and waited more than two weeks for her results. The delay which was attributed to a continuing backlog in the hospital’s pathology department following some COVID-related furloughs. Although her surgeon expected some degree of abnormality, the result revealed a significantly worse problem that required further surgery and additional biopsies.
The scheduling process was frustrating due to ongoing games of phone tag and the perceived need for real-time communication rather than using email or text to schedule. My friend voiced her frustration: “I don’t know why they can’t just text me the open times. I’ve given them permission and it’s not like they’re talking about anything medical. It’s about as confidential as scheduling to rotate my tires.” Throughout this, her sense of humor has stayed largely intact, but reading statements like that gave me a hollow feeling in my gut as I had a ringside seat to watch the brokenness of the US healthcare system play out.
Instead of sending pre-procedure instructions and patient education via MyChart, the office sent them via postal mail. They were delayed by issues with the postal service that were likely related to the run-up to the US general election. When they finally turned up two days before the procedure, she was glad to confirm what she had already read via Google, but was still baffled at why the health system can send her bill through MyChart but not other items: “I mean seriously, they send me a bill in MyChart two days after the visit before insurance has even paid, but they can’t send me the important stuff like patient ed?” I agreed with her assessment, but didn’t know how much this statement would come into play later.
Finally, procedure day rolled around. Although I was able to drive her, due to COVID, she had to go by herself with no support person. Many in healthcare overlook the impact this has on our patients. She was definitely a little off when she got back in the car, and apparently she’d had an atypical reaction to one of the medications and was having some lingering effects from that. Although I understood as a physician why the rules are the way they are, as a friend, it didn’t seem to be the best thing for the patient to let her leave the facility the way she did. I went through a similar solo experience at my recent colonoscopy and they at least called my driver to pick me up at the door and made sure I got into the vehicle in one piece.
Her surgeon told her that pathology was still backed up and to expect a two-week turnaround for the results. She describes those two weeks as “eternal” from the patient side and joked that they should have tracking on the pathology specimens like online shopping: “Imagine it! You could get an email that said we’ve received your order, then we’ve received your biopsy jars, and it could just go through the whole process. We’ve prepared your slides! You’re next under the microscope! We’re writing your results! We’ve sent your results to your doctor!” It would be funny if it wasn’t so true that patients have more understanding of the flow of goods through Amazon then they do with regards to critical tests affecting their health. Putting on my vendor / consulting hat, I’d love the opportunity to write those messages, if anyone is interested.
She also lamented the fact that during those two weeks, she received numerous messages in MyChart about “complete nonsense that has no bearing on whether I have cancer or not.” Apparently, there were two more billing messages, along with several broadcast messages regarding COVID screening and the availability of telehealth visits at the university medical center. She had a good point: “Why can’t they set this up with a different notification if it’s something important versus something generic? All the emails just say there’s a new message in the chart. It could still be HIPAA friendly – ‘you have a new message in your patient chart’ means it’s about you, and ‘you have a general message from Big Health System’ means your heart can stop racing.”
We joked about taking it further to modify the notification sound on your phone, to a gentle “whoosh” for regular messages, an alert siren for the big stuff, and a cash register noise for the billing messages. We also thought about the ability to snooze general messages for 30 days just like we can snooze annoying Facebook friends.
Almost two weeks to the day, she received a text from her doc: “Path back, margins clear, all good, will send in MyChart” which she forwarded to me, followed by a copy of her doctor’s note and the report. I saw something odd on my first reading of the report, and after re-reading it half a dozen times, I knew I had to call her. It wasn’t in fact all clear, but there was a mismatch between the summary portion of the report and the actual microscopic description of the slides. The translated version is “all the cancer is gone, but cancer is present.” She messaged her doc, who agreed to call the pathology lab to have the slides and report reviewed.
Cue more waiting time, as the lab was vague on how long it would take for a repeat reading. As a good friend, and without naming any names, I reached out to a pathologist who works in the same health system to ask about the process. She was shocked that the report went out, since there was supposed to be a human review of all reports to make sure nothing like that was released. She also told me that re-reads are supposed to be done the same day.
Three days had passed and finally it took another phone call from the surgeon to get things moving. According to my friend, “that lab is in shambles due to COVID cases and quarantines.” She also noted that errors have been on the rise across her system since they replaced the human transcriptionists with voice recognition software, which is why they instituted human review. Although I sympathized with the quarantine and technology issues, I was still shocked at what a mess was going on within the healthcare organizations that we rely on.
After the surgeon’s second phone call, an amended report showed up at 11 p.m. Fortunately, my friend’s doctor was still up working her inbox when it hit, and my friend was still up as well. I was up too, and she texted it over. We chatted the next morning, and although the amended report was reassuring, she still didn’t know if she should trust the lab “since after all, this is just my life, right? They can’t even proofread?”
It’s a good point, and I encouraged her to ask for the samples to be sent to an outside pathologist for a second read, which she did. The overread took another two weeks. Personally, I think the first lab should absorb the cost of the overread since it was their error that triggered it, but I’m sure she’ll be getting a bill. At least though she has peace of mind that the reading is accurate.
Although she has received a reprieve for the next several months, there is still more testing to come. Even if all is good, she will be looking at ongoing followup for a few years. I hope that by the time she goes through this again that the systems have recovered to the point where she doesn’t have to endure anything near what she went through last time.
Many of the factors influencing these outcomes can be laid at the feet of the relentless cost-cutting that is everywhere in healthcare. As a clinical informaticist, this story is going to haunt me for a long time, because some of the work we’ve been collectively involved in is designed to prevent incidents like this debacle. Although we push hard to try to make things more patient-centric, money always gets in the way, not to mention the impact of a global pandemic. There are lessons to be learned here:
- Patient self-scheduling can be an OK thing as long as there are guardrails around it, even for procedures. I’ve helped clients do it, and they’ve not only survived, but thrived.
- It is unclear why a practice would send paper patient instructions to a patient with an active MyChart account, especially during a time of elevated concern about the US Postal Service.
- COVID is going to be with us a long time, and we need to think out of the box on how to get patients the support they need when they’re engaging with healthcare institutions. Asking them to go it alone isn’t the answer, even if they appear young and healthy.
- Hospitals are penny-wise and pound-foolish, and that’s not likely to change.
- Amazon does a better job communicating about the status of a laundry detergent purchase than hospitals do regarding life and death matters.
- Voice recognition software may be cheaper than human transcriptionists, but cost isn’t everything.
- No matter what the technology is, human error still occurs, and multiple people missed the mismatch in the report including her surgeon. Not everyone has a friend who is a doctor to provide an additional line of defense.
- Communication is EVERYTHING.
No matter where you are in this industry, please think about this story and think about how it impacts you professionally and also personally. If this patient were your mother, your sister, your daughter, or anyone you care about, is this how you would want it to play out? Regardless of who we work for, our ultimate customer is the patient, and doing what’s right by them should always be in front of us.
How does your organization tackle some of these missed opportunities? Leave a message or email me.
Email Dr. Jayne.