My EHR Story
Written and submitted by Keri Ward.
My parents have always been, more than anything else, a loving and supportive force in my life. I’m incredibly fortunate; I’ve always been able to rely on them. They were at every horse show, every theatre performance (not just every play, but every night of each performance)—everywhere I needed them.
As an only child, I also grew up very close to my parents. We moved from town out into the country when I was five years old, and until I moved away for college there were no other children for several miles. No social media. No internet. We’re a pretty tight little unit of three.
In the past few years, I’ve been reading a lot more about taking care of aging parents and being patient as they experience hearing loss, impaired vision, decreased mobility, etc. The takeaway was: “When we met, I couldn’t even hold my head up on my own.” They’ve been responsible for and supportive of me for my entire life, and now I want to help them.
Millions of us “Elder Millennials” are beginning to experience aging parents, just as our parents experienced theirs. What’s different now, though, is that healthcare has come a million miles from where we were even ten or fifteen years ago. I’m a native technology user, and my dad is pretty tech-savvy because of his work prior to retirement, but my mother has very little (really, just about zero) interest in technology. She doesn’t even text or use social media and can only occasionally be prevailed upon to check her email.
As members of the over-seventy crowd, I’ve seen a sharp increase in their frequency of care and the number of doctors they see. Additionally, my mother is a cancer survivor who also struggles with diabetes, a serious heart condition, joint issues, and all the subsequent conditions that those cause. I’ve watched my parents adapt to their new normal of multiple doctor’s visits each month, sometimes in the same week, and what seems to be an always-changing list of medications and treatments. No easy task.
My first experience with a breakdown in communication occurred over 15 years ago while I was visiting Mom in the hospital after a minor surgery. Each day, her meals would arrive with food that was outside of her medical orders. Breakfast would be something like eggs, pancakes with syrup, and milk or coffee to drink. As a diabetic, she needs a sugar-free or natural-sugar option, like fruit. Additionally, she is sensitive to egg and lactose intolerant. Many breakfasts were not edible at all for her, so Dad or I would bring her something from the cafeteria or an outside restaurant. Lunch would usually include a sugary dessert and tea. She also had a doctor’s order to avoid all caffeine, so the tea was out as well. It took almost a week to correct her nutrition needs.
Make no mistake, the staff was wonderful! They worked incredibly hard to correct and supplement what was sent incorrectly, but it felt like they were weighted down by a system that didn’t allow them to communicate—even within the same building. Really, though, it was a minor inconvenience.
This hit home in an exponentially harsher way as we got ready for Mom’s discharge. She had already changed clothes and was waiting on a wheelchair when a nurse looked over her records one more time. I watched the nurse’s face change from a cheerful person helping a patient be discharged after a successful surgery to confusion and concern. She took a printout of my mother’s vital signs and asked us to wait a few more minutes. This conscientious nurse saved—and extended—my mother’s life by noticing what a dozen others hadn’t. She saw an irregular heart rhythm that my mother couldn’t feel. Who knows how long it had been happening, but it would have increased her risk of stroke and heart failure exponentially if left untreated. By this point, she had been monitored for 12 hours prior to the surgery, under general anesthesia, and then monitored for three to four days post-procedure. Nobody had caught the anomaly. Actually, nobody had been able to communicate the anomaly.
The healthcare workers who cared for my mother were all dedicated, well-trained, and excellent at their jobs. We’ve hobbled them, though. I saw their frustration when her meals were wrong, and then wrong, and then still wrong. They wanted to give her the best care. I saw the discharge nurse’s distress when she saw a problem that she knew could have been caught, and treated, much earlier. She also only wanted to give an important person to her—her patient, every patient—and one of the most important people to me—my mother—the absolute best care. Every healthcare professional that we had interactions with, and have had since, so clearly only wants the very same result. If we could stop the compartmentalization of information, how much better and more efficiently could they do the one thing that drives their professional lives?
Between cardiologists, oncologists, endocrinologists, and the usual health issues that one would expect from someone in their 70s, it’s a constant struggle for my parents to keep track of medications and instructions, and appointments, and on and on. Every time a doctor changes a medication or a dosage, it seems that it takes weeks or months for everyone to get the update. Dad has a master spreadsheet where he religiously logs each appointment and order and alteration or update. Sometimes it’s a full-time job.
I live 200 miles away and can’t help as much as I wish that I could. Also, every time I go to the doctor I have to try to remember when Mom was diagnosed, the name of her type of cancer, the kind of heart problems she has, etc. and then the same for my dad, all of my grandparents, and my great-grandparents so that my family history is more complete. Trying to remember everything each time I see a new doctor or provider seems impossible—I know that I’m missing something. Will it be something important? I can’t even remember how old I was when we discovered that Penicillin makes my skin peel—was I five or was I seven? I’m staring down the short slide to 40 and my pediatrician is long retired—where are those records? The days when the town doctor delivered you and then his son the new doctor put you into the grave 73.4 years later are over. Our records are in a dozen places and the whole picture is so fractured.
There has to be a way to put the puzzle together; I just know that we can do better. Our healthcare providers devote their lives to making ours healthier, longer, and better. It’s long past time that we help them.