The next in our series of “How I became an e-patient” posts. Tyson Ortiz joined a few months ago, having been introduced to us by fellow Lean practitioner Mark Graban. His story weaves together two concurrent threads: learning about a new aspect of Lean, and the arrival in his life of an urgent need for excellence – a newborn son with a serious medical challenge. The outcome is inspiring.
Like many others, I became an e-patient in response to a loved one receiving a terrible diagnosis. In the summer of 2012, my wife was 20 weeks pregnant when we learned that our son would be born with half a heart. This condition made his chances of living to see kindergarten roughly a coin flip.
Perhaps unlike others, for me becoming an e-patient was more of a process than a sudden event. At the time, my personal history was better characterized by shrinking from challenges than rising to meet them. I didn’t really bring to the table the investigative skills or purposeful drive that an e-patient needs to be successful. In all likelihood I would have followed the traditional path of simply deferring to the experts if not for a fortunate coincidence in my professional life.
Just before my son’s condition was discovered, I had begun a career transition involving some unique training. In the business improvement field known as Lean, there is a recent movement known as Kata. Kata defines a training process to grow the skill and confidence of any employee – and ultimately every employee – to improve their own work as a routine part of the job.
The idea is that the scientific method is the best means humans currently have for approaching challenging objectives, that scientific thinking is a skill anyone can learn, and that frequent practice with coaching guidance is an effective way to teach this skill. My career transition required Kata training.
Just like a high school student might take part of each day to practice a sport or musical instrument, about a month before receiving my son’s diagnosis I began taking a small part of each workday to practice applying the scientific method to process improvement. This included a brief meeting with my manager each day, where we walked through the step I was planning to take that day and he offered corrective feedback. His feedback wasn’t about helping me take “the right” step, but rather to help me recognize my own uncertainty and test my own ideas to learn more and move forward. His job was to help me learn to think scientifically.
At first, these coaching sessions were quite difficult. Like so many of us I had formed strong habits around spouting answers and avoiding mistakes, but scientific thinking is about seeing uncertainty and learning from being wrong. It took months of practice for my mindset to shift, but gradually it did and as a result I began to look differently at my son’s case.
When my wife and I first received the diagnosis, the fear was absolutely paralyzing. It was the best we could do to go to appointments, be told what was happening, and follow instructions for what to do next. Still, understanding that our son’s chances were not good we wanted to do whatever we could to help. But how? There was so much to learn, and so many decisions to make if we chose to engage. The swirl of questions and choices was overwhelming.
At work I was learning to form reasonable objectives and work in small steps, focusing only on the questions or obstacles clearly in the way of my current objective. Taking this home, my wife and I first worked to choose a surgeon and center that offered our son a great chance of getting through his first surgery. With that accomplished, we worked on temporarily relocating our family to be near that center when our son was born. These are fairly small objectives, but they were appropriate to our skill at the time and useful in helping us face our fear with purposeful action.
Our son was born safely and did very well early on, but over time he experienced many complications and his case has grown extremely complex. At work, my manager would often bring me into his office to have me walk through my son’s current situation and my next steps for facing his challenges. As in my process improvement work, he would ask questions and offer observations related to how I was or wasn’t approaching my son’s care scientifically.
Perhaps not coincidentally, as my son’s challenges have grown, my wife’s and my ability to engage in managing our son’s care has grown as well. (Last summer the Association of Manufacturing Excellence published an in-depth article on how my Kata practice generated a wealth of good outcomes – not just in my son’s case per se, but in how I myself grew as a result.)
Our objectives have become more ambitious, our engagement reinforced by our successes, and the impact of our engagement on our son’s outcomes has proven invaluable. It’s taken six open-heart surgeries including a transplant, with changes of health systems and medical teams including a permanent cross-country relocation, but today we have a thriving three-year-old with a bright future that would not exist if not for our engagement.
His future is still uncertain, and I still harbor some fear about what could go wrong, but today the fear is manageable and I feel quite capable of facing whatever lies ahead. I have learned from experience that uncertainty is natural, and even useful because it shows where the next step needs to be taken.
This means we rely on our son’s medical team for the expertise we lack, but we don’t look to them for answers so much as to help us understand and explore the uncertainty in his case. We learn as we go, trying to meet our responsibility to set objectives in our son’s care and help the team choose steps that fit with what we have learned about his case. We don’t think we know better than anyone else what will or won’t work for our son, but we have learned clearly that no one really knows. The best we can do is try to collaborate with the team in navigating that uncertainty together, and it feels so much better to contribute to his care plan than to be subjected to it.
Four years ago, no matter how many blogs or books I might have read, no matter how many training classes I might have attended, I don’t think I had the skills or mindset to help my son. I think the fear of his diagnosis would have driven me to defer to the experts, and that I would have lost him by now if not for the coincidence of a career decision. I didn’t become an e-patient out of necessity.
I became an e-patient with deliberate practice to help me gain the skills and mindset that my son needed me to find.
Wonderful, multi-layered story that sparks a lot of ideas. Uppermost is the concept of a decision coach, which frankly I like much more than the concept of advocate. Patients have taught me that the job is not to help them find the best answer, but to prime them to find their own. The confidence that arises from being convinced you’ve found your own is what re-empowers.
Wonderful and inspiring story and quite personal, thanks for sharing. Glad to be working with you on the Membership Initiative.
Tyson, Your amazing story is a real-life example of one of my favorite Japanese adages, one that’s been adapted for QI / kaizen / hoshin planning: When the student is ready, the teacher appears.
As I’ve gotten to know you through our work as hospital family advisors, I’ve noticed our parallel journeys: We both have sons with complex congenital heart defects. We both have professional backgrounds working in QI and we understand strategy, management systems, etc. more than the average parent. Another experience we shared was the pre-diagnosis shift in our thinking, which catalyzed once our sons were diagnosed, essentially forcing us to come up to speed quickly and go a mile deep into this whole new subject of #cCHD – and today we are better for it.
My son became my teacher, and through learning to identify, coordinate and manage all his needs, I became a better CQI coach in the bargain. Thanks for sharing this personal and inspiring story of your growth and journey as a full-fledged E-Patient’s e-Dad!
A life story on how to face the unknown without fear but rather with inquiry, keep the long term objective in your sights but understanding the journey will be discovered as you move forward one step at a time.
Thanks for sharing.