Kafka himself could not have imagined the chaos and cruelty of present day medical and insurance bureaucracies. #MedicareForAll
— Peter O'Connor has left the South End (@BostonMassMark) April 26, 2019
Wow, now I’m frightened!
— Jason wise (@YettobseenJason) April 26, 2019
I want to tell her what my mom's doctor called me to say last week after I sent a peeved email:
— Libby Brittain (@libbybrittain) September 11, 2017
You're right.
I hear you.
It's broken.
I overheard them very kindly offering phone interpreters several times, but the issue is that this barely made sense in my first language.
— Libby Brittain (@libbybrittain) September 11, 2017
When my youngest was a newborn the system showed I was still pregnant and he was not born yet. I couldn't get care for him for 2 months (I did, but paid out of pocket). I was standing there with my child in my arms in the hospital he was born at and no one could do anything.
— Coni in the garden (@coniinthegarden) April 26, 2019
So my dad is in hospital with complex problem. In a perennially top-ranked facility. Hes an MD. Im an MD, in systems mgmt 4 a huge bureaucracy.
— Hasan Shanawani MD (@hshanawaniMD) April 25, 2019
I can’t navigate my dads care. Im struggling-& LIVID.
If i cant do this, no WAY anyone can
When im calmer, y’all getting a thread
.jpg)
This is my dad, Said (Sa-YEED).
— Hasan Shanawani MD (@hshanawaniMD) April 26, 2019
He's 83. He came to America in the '60s
He's a neurologist--that's a brain/ nerve Doctor.
Said is the best doctor on the planet. pic.twitter.com/GbmnytK5hY
I learned 2 critical things from dad about being a doctor:
— Hasan Shanawani MD (@hshanawaniMD) April 26, 2019
1-Talking 2 patients & examining them well is SUPER important.
2.Doctors aren't scientists--they're ADVOCATES.
"YOU DO 2 THINGS HASAN! figure out what your patients need, & MAKE SURE THEY GET IT. Nothing else matters."
The threads I will share w/U will be about the RIDICULOUS stuff I have had 2 navigate in my dad's care.
— Hasan Shanawani MD (@hshanawaniMD) April 26, 2019
The theme:
MY DAD THE MD & ME, THE MD BUREAUCRAT, 2 ADVOCATES, WHO NAVIGATE THIS EVERY DAY 4 PATIENTS, can BARELY HANDLE THE CRAZINESS. & that means lay people R IN TROUBLE pic.twitter.com/9Nlw37Ifzf
“Struggling and livid” sounds very familiar. We could be doing so much more for each other. (But I’m sure you’re doing great in the meantime, even if it doesn’t feel like it.)
— Libby Brittain (@libbybrittain) April 26, 2019
One of many dispatches on this topic from caring for my mom: https://t.co/zcv8JYotvD
I’m so sorry to hear about your dad. Hope we gets better and if you decided to start a co to help fix the problems lmk, id be interested - totally agree w your experience :(
— aileenlee (@aileenlee) April 26, 2019
Sadly true of most metrics--"Not everything that can be counted counts and not everything that counts can be counted."
— Dawn Sherling (@dharrissherling) April 25, 2019
IMO, these problems were less common when family doctors (and internists) were able to admit our patients & manage their care in the hospital. As a #DPC doc, I don't write orders but offer to coordinate care & act as advocate when hospitalization is unavoidable
— Molly Rutherford, MD (@UnbridledMd) April 25, 2019
THIS. Its been mind blowing how ridiculous the communication is between teams. My son is an oncology patient and 3 weeks post chemo (right now) for a major surgery, so we’re being followed by the surgery team. Completely different goals and outlooks and we’re caught in the mid.
— ThatFrugalPharmacist (@FrugalPharm) April 25, 2019
Surgery says “he’s 3 weeks post chemo, as far as we’re concerned his a surgical patient.. give all the enemas!!!!!!” Oncology says “hell naw” in the meantime we’re still sitting here waiting to poop so he can take feeds without puking and get out for a few days before next chemo.
— ThatFrugalPharmacist (@FrugalPharm) April 25, 2019
— Ken Jaques ๐จ๐ฆ (@kenjaques) April 25, 2019
Agree! But I’m not picking antibiotics, im trying to work out with the kafka bureaucracy that he met criteria for admission and shouldn’t be observation status for 2 days.
— Hasan Shanawani MD (@hshanawaniMD) April 25, 2019
I'm also a physician, Stage 4 CRPC (prostate cancer)... Early on, there was such poor communication, inefficiencies, frustrations. I also thought, if I can't get the right care I need in a timely fashion... How can Common Joe get what he needs??!!
— matthewrings (@matthewrings) April 26, 2019
Ugh. Been there. I’ve had MD’s tell me the only reason my daughter’s still alive is because I had experience navigating the system. I do not know how anyone w/o medical knowledge survives hospitalization anymore. Sending good thoughts your way.
— Lonnie R Marcum, PT (@LonnieRhea) April 26, 2019
I have to navigate my own care as an MD in my own Health System and get super frustrated! Every time I have to do it, I remind myself of my privilege. I also am that much more motivated to help my patients navigate!
— Anika Kumar, MD (@freckledpedidoc) April 26, 2019
Isn’t it so sad how complex the system is for medically literate people! Could you imagine how it is for others
— Curious_Seeker,MD (@md_seeker) April 25, 2019
All the analogies I can think of seem so outlandish to anyone who hasn't experienced this. Like Pleasantville, you understand the plot and the characters but you can't get them to see that they're playing pre-set roles they could step out of if they chose.
— Carolyn Ostrander (@c_ostrander) April 26, 2019
My 9 yr old has stage 3 kidney disease. It’s all very new to us. Sees 3 specialists- uro, neph, & endo. All in same system. I can’t rely on them to “talk” to each other through their med portals so they all know what scans/tests/medications the others request. The mind boggles.
— KnittaPhD (@knittaphd) April 26, 2019
My rheumatologist asked my GP to investigate something. She didn't tell my GP that she had already referred me to another specialist who ordered a bunch of tests. My GP knew nothing of this. I was unimpressed.
— Thomas M. Littlewood (@tmlittlewood) April 26, 2019
I’ve been there before with my mom’s first admission after being diagnosed with metastatic breast cancer...in the same hospital I was a 2nd year resident in. It was maddening and I thought the same thing.
— Michael Foxworth II (@mkfoxworth) April 26, 2019
My RN friend had a hard time navigating her oncology care. Doc who did her surgery wasn’t her doc anymore. Was waiting for radiation, but no one was doing lab work— family doc felt too uncomfortable. After radiation, rad onc wouldn’t order tests. Follow up care was tough.
— Patricia Ann (@Patricia_Ann_E) April 25, 2019
The healthcare industrial complex became this way as it was hijacked by “business knows best” approach - your reply is both kind and welcome... we are all in the same boat ๐ฃ♂️ literally
— ⚛️Dr. Philip Kousoubris (@ChestnutPhil) April 26, 2019
Welcome to our world. Now do the same thing while super sick and in tons of pain. ;) I await your thread... #EDS #HSD #hEDS
— Oh TWIST! (@H2OhTwist) April 26, 2019
One MD to another pro tip: Buy pastries for the nurses every day. Got my Dad a pacemaker and home in record time.
— peter kilmarx (@PeterKilmarx) April 26, 2019
System is broken. Providers are stretched too thin. Too much time spent on documentation of things that don’t make an impact on care, to facilitate billing, or cover someone’s ass. Think how hard it is for people who aren’t HCP to navigate.
— The Redhead (@southernredhed) April 27, 2019
I’ve taught and researched in three top medical centers, been a patient in two and no amount of clout connections or knowledge makes a meaningful difference. If it’s this way for us, imagine what it’s like for someone with zero support.
— Christopher T Scott (@TheStemCell) April 26, 2019
So sorry to hear this and thank you for calling this out. My brother is an MD and we both struggled to be patient advocates for my dad and mom after a car crash and then when my dad had cancer. If it's hard for us...imagine what low income, less connected families have to endure!
— Maria Hernandez, PhD (@drmghernandez) April 26, 2019
Dude. We should talk. My biggest ongoing outrage is the troubles we run into with two parents there for a sick child 95% of the time, me being a pharmacist and it’s still a clusterfuck. Don’t get me started on when there’s multiple departments involved. How are ill ppl, alone..
— ThatFrugalPharmacist (@FrugalPharm) April 25, 2019
Or single parents (or parents where one must work and the other must deal, exhausted, with providers with a screaming child in the room at all times) supposed to navigate? If I had time and inclination I’d look into a career as a patient navigator. Patient advocates office is..
— ThatFrugalPharmacist (@FrugalPharm) April 25, 2019
The lab that tested me didn't convey my positive results to my doctor, so they just thought it was a Crohn's flare. 3 months of basically having to be by a toilet
— Emursgency (@phnel) April 26, 2019
How can we expect patients to navigate care and treatment plans when we have NO idea what it entails? I have been in your shoes and it is draining..and I’m a nurse.
— momo1 (@CostelloMonica) April 25, 2019
Best wishes for a speedy recovery.
My father was in hosp for 5 mos. if I wasn’t there daily or had the cell # of his dr who did rounds there it would have been even worse. My favorite was asking “how is his blood sugar” and their reply “oh he’s diabetic??” I think charts were only used to cover asses and bill ins.
— Amanda Dugger (@wwt_dugger) April 26, 2019
It’s so frustrating as a therapist when I recommend SAR for an elderly patient that fell and sustained a rib fx or pelvic fx but they don’t “meet criteria” for admission and thus can’t go to rehab. Ok Etna someone from your office carry them up the stairs at home.
— LarissaTeal (@LarissaTeal) April 26, 2019
So true! ❤️fellow hospitalist that loves small hospitals
— Amy Townsend, MD (@amytownsendmd) April 26, 2019
me: so, dad, when were you gonna tell me you are in hospital?
— Roberta (@RobertaSchell) April 25, 2019
my father: get the f*ck out of here. when they figure out I am related to you...they order more tests.
my observant father noticed this.
2/2
This is what happens when medicine is built on a profits-first, people-last system ๐
— Soph (@sophie_mayb) April 26, 2019
My family member has been in the hospital for 2 months rotating between ICU and surgery. So many MDs, no clear communication, poor patient advocates. As GenX and millennials start navigating our parents healthcare, the system is failing all of us.
— Nina Baliga (@nbaliga1) April 26, 2019
