I worked in healthcare for twenty-five years.
I’ve been inpatient a dozen times since the age of 12.
I’m a casual reader of dissertations on the crisis in healthcare delivery and payment reform, on navigating the system as a family member, healthcare worker and patient. (Recent read: The Bright Hour by Nina Riggs, so gorgeous and profound and funny.)
And yet, nothing prepared me to be sick and admitted, lying inert on a hospital gurney, simultaneously trying to make a decision about surgery whilst contemplating the absurdity that is the American Healthcare System.
This trip was minor: a surprising diagnosis of appendicitis (all kudos to my pediatrician husband for calling it super early.)
I am one of the fortunate ones: I know how this works from the inside out. Instead of hours in an ED, I knew to email my primary doc at Stanford Health, get an appt within an hour, blood tests and a CT w/ contrast outpatient by mid-afternoon, and was fast-tracked through the ED and admitted by early evening. While we waited, David read the literature and knew to ask for a radical alternative to immediate surgery: antibiotics.
First and foremost, every single nurse, assistant, resident, attending physician, admitting person, triage guy, CT Tech, lab tech and food worker were kind, cheerful, helpful and dedicated. Every single one. Also, willing to listen.
But US protocols dictate surgery. The efficient (and kind) ED doctor and nurse presumed NPO (no food/drink) and zipped in an IV with supreme confidence that I would be in the OR shortly.
And the “System” requires massive dotting/crossing of eyes and T’s. At every turn, we must enter the new thing into the system, wait for the update, wait for the order, wait for the approval, wait wait and wait some more. I must sign an agreement to pay out of pocket $10,800 for my CT because insurance cannot possibly approve for another 48 hours. (Though, yes, I’ll say what we ALL say: my doctor has trained for decades and has HANDS ON ME. She knows a CT is “medically necessary.” What am I supposed to do? Wait, in pain and dread??)
The awesome (and I mean, first rate) surgical team listened respectfully to our request to consider surgical alternatives. They were all very familiar with the studies David found and offered me their opinions on the so-so outcomes. They allowed me the time to (frantically) weigh my options.
How hard is it to decide? In the abstract, sure, no problem. Statistics say this, experience says that, but practicality says another: David’s clinic schedule, our vacation on Sunday, my Mendocino conference scholarship, and most important, my already scheduled August surgery for a minor but problematic cyst, and the very real and huge consideration of the number of times I’ve already been under anesthesia? Could we do both surgeries tonight? No. Tomorrow? No. Operating Room time not available. AARRGH!
All while being stuck for the IV and stuck for the tests, thirsty beyond measure, clothes in a paper shopping bag, ass hanging out of the gown with bizarre snaps and twisty ties, wrestling with that awful rubber mattress thing, and being shuttled around various ED rooms in the under construction Stanford hospital.
And, let’s be honest. My desire to please. If I’ve kept that at bay in most circumstances, looking up from the bed half-naked at the Oh-so confident docs (though I’m married to one) who are clearly leaning to the Surgery choice (the risks of relapse after treating with antibiotics are “unacceptable” one said), is one of those times I will say, “yes, cut me open” to get us all on the same page. To be the Good, Cooperative Patient.
Wait, wait, wait, I wanted to say. Give me a second while I find my intelligence. I don’t know what to do! Tell me, am I being a pain in the ass? Am I disappointing you, surgical resident, are you looking for an appy to perform this fine Wednesday night, are you anxious that we choose the “right” answer and my case is a success for you?
Man, so ridiculous in hindsight.
But the machinery grinds on, they are all captives to the Electronic Medical Record, to the Protocols, to the training and the vast amount of literature on the vast number of differential diagnoses, to the wait times and availability of OR time and beds in Observation, to Efficiency Goals and Department Initiatives and everyone has a zillion patients waiting to be seen, and a bunch of inpatients to round on and an overbooked schedule back at the office, plus all those charts to write, sign off on, labs to review, orders to finish, all known as the US Healthcare System.
I know firsthand the frustrations of working within. I know firsthand how brilliant and caring and motivated the vast majority of healthcare workers are, especially at Stanford. But they are being stymied by an out of control machine that was supposed to streamline and free them up for actual patient care. What happened?! In our desperate search for a way to measure quality, we’ve super-imposed cost-accounting outcome measures that read suspiciously like must-follow recipes in strictly worded cookbooks that become the arbiters of our Health. Woe to those who substitute quinoa flour for white all-purpose.
And so to Atul Gawande (Being Mortal: Medicine and What Matters in the End) who urges us and our caregivers to take the time to consider what matters to each of us as individuals, whilst also drawing an eloquent picture of being trapped by the Healthcare bureaucracy (https://www.newyorker.com/magazine/2018/11/12/why-doctors-hate-their-computers) I say: I tried.
Now I wait with some trepidation that I have chosen wrong and that I won’t make it to my surger(ies) date. That my inflamed appendix and I will trek back to the Emergency room prematurely and I’ll have to decide all over again.
But at the least, I’m practicing for when it really counts. I’ve learned that doctors in training need to hear from patients like me, to take a moment and consider the alternatives (and maybe even learn to offer them, because not everyone is married to a guy who’ll do a literature search.) And, I’ve learned that I will snarl up the schedule a little, and make unconventional choices, and that’s fine. In fact, it’s great.
Thank you, Dr. Gawande, for educating and empowering me.