The Medical Mess of America
Our dialysis story — chapter 5
There are no threads of connection for medical care in the USA. If you move from one state to another, your medical records are not conveniently put on a thumb drive that you can submit to your new doctor. They may be sent electronically if your old doctor/hospital has the same software as your new doctor/hospital, which is unlikely. More often than not, printed records will be given to you to hand-deliver or mailed to an address you provide.
The American medical network is still in the 1970s.
We have two hospitals in our city, and they can’t communicate. Most doctors here are associated with one hospital or the other. Ben and I have doctors associated with the HCA hospital, where we’ve had procedures and operations to keep it all in the family, so to speak.
When Ben fell and hit his head last September, I took him to an ER clinic associated with the HCA hospital. They said he needed hand surgery. There wasn’t an on-call hand surgeon at their main hospital, so they transported him to the UF Health Hospital. His injuries were treated in that ER, and he was admitted to the Neurological ICU for a brain bleed.
That hospital could not or would not communicate with his HCA doctors. The doctors there relied on my memory about all of Ben’s health issues, operations, treatments, and medications. They wouldn’t even call his primary care physician because she wasn’t in their network.
They also messed up his records in their system. His ER records were under his correct name. His Neurological ICU records were under a misspelled version of his name. It was and is a mess. Although I have access to an online patient portal and was told his two records were merged, I can only access information about his ICU stay. In fact, I printed almost 200 pages of patient records to give to his primary care doctor, and she said there was very little useful information on those pages. They may as well be blank, she said.
Even doctors within the same hospital network refuse to access records, instead relying on a patient or caregiver to complete pages and pages of paperwork.
Two years ago, Ben consulted with Dr. S, a surgeon associated with HCA, about a possible operation. The doctor advised against it. That same doctor removed my gall bladder in 2021.
When Ben’s nephrologist said he needed surgery to install a tube in his abdomen for peritoneal dialysis, I asked if we could be referred to Dr. S. The nephrologist said he didn’t know Dr. S and preferred to use the surgeon that takes care of all his dialysis patients. We were fine with that.
So, I was surprised when I received a call on my cell from Dr. S’s office. Both doctors are in the same practice. Handy, I thought, Ben is already in their system.
I told the office assistant who called that Ben was already a patient of Dr. S and would still be in their system. She said she was mailing some information to us.
She mailed a New Patient Packet containing a 13-page questionnaire asking for Ben’s complete medical history, medications, personal information, etc.
He is not a new patient. They should have most of his information. What they don’t have should be available in the HCA system, except for details about his hospitalization at UF Health.
I had a mini-meltdown.
Until last year, Ben handled most of his own medical appointments, etc. I provided transportation but only attended appointments if there was a possibility of a procedure or operation being scheduled. Usually, I dropped him off and went grocery shopping or read a book in the car.
Since last year, I’ve taken over everything medical that has to do with him. I looked at the hefty questionnaire and said I would not complete it. In fact, I don't know that I could complete it. But that wasn’t the point.
The point was: no one should have to complete that questionnaire.
They already have most of his information and should be able to obtain the rest.
They didn’t know about my being involved, so they sent a detailed questionnaire expecting it to be completed by an 83-year-old person. That’s not reasonable and borders on outlandish.
Ben said I had a bad attitude.
I agreed and restated that I would not and should not complete the questionnaire. I huffed off to work after telling him to do it himself.
He made an attempt. Mostly he filled in his name on the forms. He has no idea of dates, procedures, or the other requested information.
And that’s the other thing — his name is on nothing. Each page required him to write his personal information at the top. He wrote his name and mostly skipped his address and phone number.
I work for lawyers. Once a client is in our system, his/her name is auto-populated on every form we print. We don’t hand a client a ream of legal documents and say, Put your name and address on every page.
Why can’t medical offices do the same?
I saw his sad attempt at completing the forms, but I still balked at completing them myself.
I hate forms. The fill-in spaces are never big enough, especially when you’re trying to record 83 years of medical history. It’s just plain ludicrous.
I did, however, type a lengthy letter to the doctor’s office informing them that he’s already a patient there and they have most of his information. I provided brief descriptions of any new medical care he’s received since the last time he saw Dr. S and told them to consult the HCA network if they need details.
I also gave them a copy of his discharge papers from his UF Health hospitalization, noting that the information there was incomplete.
I printed out the list of his medications that I keep in my Google Drive, rather than scrawling for 30 minutes to list all of his meds on a too-short, too-narrow form.
Tomorrow, four days before his appointment, I’ll drive across town and deliver my packet, allowing them time to gather whatever other information they need.
That is the best I can do. That is all I can do.
© Dennett 2023
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