Last week my oldest brother got a call at midnight from Doctor K that our father needed to go into surgery right away and that he had a fifty percent chance of surviving the procedure. My dad lives in Texas and was being treated in a hospital three hours from where he lives, but my brothers and I were even farther away in Florida and in Toronto. None of Dad’s family could be there immediately.
Thankfully, at three a.m. my brother got a follow-up call that Dad had made it through the surgery okay. A few days later my brother (and my five-year-old nephew) and I flew out to see him.
When you only occasionally see someone you love who is ill, you think every time you see them may be the last. I wasn’t immune to these thoughts during my trip to see Dad, but another motive for going was to get a handle on his prognosis and to help facilitate his care in whatever way possible. Most of all, we were thinking we could be advocates for him while he was too weak to look after himself.
It is to that end that I share this rather personal story which shows a side of the picture that is easily forgotten, especially by people like me who work in healthcare but not on the frontline. We talk about this side of the story – the patient perspective – all the time, but living it is a whole different reality.
The healthcare system in Texas, as I imagine it is anywhere, was convoluted and frustrating and terrifying. At one point, I asked the nurses station how I might obtain my dad’s medical records for him. I literally had two nurses standing in front of me simultaneously telling me to do different things. (“Go upstairs,” said one. “No go downstairs” said the other. “On second thought,” said the first, “Call this helpline.” “They won’t tell you anything over the phone,” said the second.)
But this frustrating system was also miraculously effective. Certainly it saved my dad’s life. It works. But I can’t stop myself from thinking:
It could work so much better.
Steve Jobs surely felt the same way when he lay in hospital beds, redesigning hospital equipment.
Intubated, when he couldn’t talk, [Steve] asked for a notepad. He sketched devices to hold an iPad in a hospital bed. He designed new fluid monitors and x-ray equipment. He redrew that not-quite-special-enough hospital unit.
Unfortunately not all patients are so well-equipped, or even nearly as motivated as Jobs. It’s up to us in the Land of Healthy try to make things better for those in the Land of Illness. As much as it is the surgeon’s job to perform surgery, the nurse’s job to nurse patients back to health, and the pharmacist’s job to manage medications, it is my job to keep showing people how much better this system could be. This is the value of embedding designers into healthcare settings. Designers certainly do not have a monopoly on vision, but we have a unique capability to realize that vision.
From the patient and family vantage point, it is easy to see healthcare’s big flaws. But it is also easy to observe the complexity of good care and why it may be that change within hospitals happens slowly, and it becomes easy to think: Why mess with a system that works? Why indeed. Surely it is a wake-up call for me as a designer as to how challenging it is to bring significant change to a system that already “works.”
There are many many visions when it comes to treating patients, both in a hospital and out. And this was the first major issue that my brother and I tackled while speaking up as our father’s healthcare advocates.
The burden of diluted care
My brother and I spent much of our time in Texas talking to various surgeons, nurses, nursing students, social workers, and admin folks involved in our dad’s treatment. Whenever we thought we had a firm grip on what was going on, we would be thrown by additional information from someone else who just walked into the room. For example, it wasn’t until Dad was being discharged from the hospital that we first learned he had a bit of pneumonia. We were on our way to the airport by that point and left feeling as though Dad’s care was out of our hands. Surely there will always be some truth in that, but it is not an empowering bookend to the trip.
This lack of communication is an example of how diluted care takes its toll. During the three days we spent with Dad, we didn’t see any doctors or nurses on more than one occasion. Only one person – the discharge nurse – updated the whiteboard in his room to accurately reflect the correct date and assigned care providers.
One nurse came in to take Dad’s blood work and when I asked what it was for, she told me she wasn’t allowed to say. Under our own family’s circumstances, this kind of answer was unacceptable (Dad didn’t know what it was for either), and I shudder that I did accept her answer. Upon reflection, I know I did so because I was afraid. I was afraid that if I kicked up a fuss, my dad would receive lesser care.
What does this say about modern healthcare systems? The situation is eerily reminiscent of how most people now regard the TSA: a necessary evil for safe air travel. We put up with bad systems because the consequences of not putting up with them can be so severe. Surely this is not what healthcare providers want hospitals to be like (Dad joked, “It must be frustrating for them too with all their patients – I don’t know how many different people I was when I was there!”), and it is certainly not what patients and families want it to be either. But there it is.
Mobile devices, the Internet, and social media have empowered people all over the world. I’m so glad that mhealth is “poised to explode” because we need the same innovation and empowerment to happen in healthcare as it has in other industries.
You can see how even from bed my dad was able to operate an iPhone and an iPad, playing Yahtzee with my nephew. Why couldn’t we craft the same engaging interactions to manage one’s health? I guess the answer is we can. We will. We are. But these solutions could not come soon enough, especially for the patient who is lying in bed right this second wondering how they are going to get a grip on their health.
Bless my dad for letting me share a bit of his story here. He once told me, “If it’s the truth as you see it, chase it down and rub it in the dirt.” The truth, the personal story, is easy to lose in healthcare, tucked away behind walls of patient rooms with people remaining very private and suspicious about sharing health data. This hurts patients at the same time that it protects them (which is why I love seeing Patients Like Me gaining momentum). Hopefully some of the insights from Dad’s story will continue to inform my work from behind-the-scenes of healthcare way beyond this sombre occasion. And maybe by sharing it here, it will inform others’ work as well.
Most people have their own story and personal experiences with healthcare systems. What were your insights? How could your experience have been improved?
If this is your first introduction to my dad, you should know we once made a children’s book together. Dad wrote the story that I illustrated called Beto’s Burrito. Check it out and buy a copy online – 50% of the proceeds benefit the Centre for Addiction and Mental Health Foundation.