Information Void
Our dialysis story — chapter 10
“America’s health care system is neither healthy, caring, nor a system.” ~ Walter Cronkite (1916–2009), American Journalist and News Anchor
When Ben was hospitalized to start kidney dialysis, a hospital caseworker called and told me that before he could be discharged, she needed to schedule his outpatient dialysis and that she’d do that in coordination with his nephrologist. She called back later and said his first outpatient session would be that Friday, May 19th, at 11:15 am.
Confused, I asked:
He has his pre-op appointment for his permanent port installation that morning. Should he go to dialysis in the afternoon instead?
Irritation was noticeable in her voice when she replied:
I didn’t know that.
It’s in his records. I know the nurses can see the appointment on their computers. Can’t you see it? His doctor also knows about the pre-op.
A moment of silence, then:
I’ll have to see what his doctor wants to do.
She called later to say that Ben would stay an extra day in the hospital for one more dialysis treatment and:
We’ll cancel his outpatient dialysis on Friday. His first one will be on Monday.
Friday morning, I called the dialysis center to confirm that his appointment time for Monday would be the same as his canceled time on Friday. The appointment coordinator said no one canceled Ben’s scheduled “chair time” for Friday. When I told her the hospital caseworker was supposed to do that, she sighed heavily and said:
Not surprising. This happens quite often. Yes, he needs to be here by 11:15 on Monday.
Did she cancel his dialysis for May 26th? He has surgery that day.
Another deep sigh:
No, she did not.
Over the weekend, I went to the dialysis center’s website to look for renal diet recipes and discovered a statement that all patients should set up an online account for the patient portal. No one told us that — not the caseworker or the center’s coordinator.
I set up an account and was pleased that Ben’s information populated from the hospital database. I could see all his personal and insurance information and pages of medical data. I was relieved that we wouldn’t have to worry about all that on Monday.
I also read that patients should not bring personal items to dialysis because the center could not be responsible for lost items.
We arrived at the center on Monday at 11:05. The coordinator asked for his ID and insurance cards.
You have all that information; I saw it when I set up his online account.
I have to have copies of his cards.
I didn’t bring his wallet because the website said not to bring personal items. What’s more personal than ID and insurance cards? I followed what the website said.
She handed me a clipboard with a stack of paper.
Fill these out and have him sign where highlighted and bring his cards next time.
Twenty-three pages and 16 signature lines — including a page for every vaccination known to mankind, many of which were unknown to me. Each page asked for the date, time, manufacturer of the vaccine, and where it was administered. What? Other than Covid vaccines — for which, surprisingly, there was no form — do we ever know the manufacturer of flu, pneumonia, and other shots? No. Neither did I know the times and exact dates of the shots Ben received in the past several years.
I left a lot of blank spaces.
He signed the forms blindly. Had we taken the time to read everything, he would have missed dialysis.
A nurse came to lead him through a door that was plastered with warning signs:
No Visitors Beyond This Door No Food or Beverages Allowed No Personal Items Allowed
We kissed goodbye, and I went to the parking lot. Before I started my car, the nurse was knocking on my window.
Do you have his blanket and pillow?
Excuse me? What blanket and pillow?
The ones you were supposed to bring.
No one told us to bring anything. In fact, your website and the sign on the door say: No Personal Items.
Well, that doesn’t refer to blankets or pillows. It’s very cold in the dialysis room, and everyone needs a blanket and most want a pillow. We don’t provide them. Also, if he wants to watch television, he has to have his own TV-compatible headphones.
Something else we weren’t told. I guess headphones aren’t personal items, either. Fortunately, I knew he wouldn’t be interested in watching TV.
I swallowed as much of my anger as I could.
I spoke to your coordinator Friday; she never mentioned a blanket and pillow or headphones. Neither does your website. How would we know?
She ignored my question.
Can you go home and get them?
It would take at least 45 minutes.
She pondered and said:
Well, we’ll cover him with some of the disposable lab jackets we have and roll one up as a pillow. That should be good enough.
It wasn’t good enough. Not even close.
Twenty minutes later, I arrived home and took Syau for her noon walk. We were about 10 minutes from home when the nurse called.
Your husband wants to stop dialysis because he’s too cold. We can’t keep him if he doesn’t want to stay.
Good lord, the room is that cold? Why didn’t someone tell us? Tell him to stay. I’ll bring a blanket.
Ben is cold-natured. He wears a jacket when it’s 80 degrees. I could only imagine how miserable he was.
I rushed Syau home, grabbed two blankets and a pillow, and drove 20 minutes across town to the center.
The nurse took the blankets and pillow from me and disappeared behind the door with all the warnings. Before I reached my car, she yelled from the lobby.
He says he’s too cold. He still wants to disconnect. We can’t force him to stay.
I convinced her to ignore the No Visitors Beyond This Door sign and let me in to see Ben.
The dialysis room was frigid. Probably the coldest room I’ve ever been in. I wouldn’t have been surprised to see icicles hanging from the ceiling.
Ben was shivering and shaking. There were two thin plastic lab coats stretched over him and nothing under his head. The pillow and blankets I brought were sitting on a nearby chair.
His hands felt like blocks of ice. I covered him with the blankets and positioned the pillow under his head. He begged to go home, but I kept reassuring him that he’d get warm soon. I pulled one of the blankets high enough to cover his icy ears and took his hands in mine, rubbing them briskly to generate blood flow. Eventually, he settled down and agreed to stay.
With a trembling voice, he said:
I’ve never been so cold. It was horrible, and all I had were those plastic things that weren’t warm at all. I just wanted to go outside and get warm. I wanted to go home.
He started to cry.
I started to cry.
Then, my anger boiled over.
I asked to speak to someone in charge and was ushered to the office of the center’s social worker, where I met a man with graying hair and the body of a football linebacker. His office wasn’t much more than a closet, and his bulk occupied most of the space.
For ten minutes, I listened to his life story, wondering when we’d get to the reason for my unscheduled visit. Once I had the opportunity to speak and express all my frustration and anger about the lack of information provided to us, he fell into “placate-the-angry-woman” mode, saying all the soothing bullshit that I was tired of hearing.
All valid complaints. I hear you. Believe me, I hear you. Yes, you are correct, communication is important and we dropped the ball. I’ll bring this up at our next staff meeting. We want you to be informed and your husband to be comfortable. He has his blanket and pillow now, right? And next time, he can bring a snack. Make sure he brings something to eat. That’ll make him feel better.
So are we supposed to ignore all the rules?
Linebacker looked confused.
The signs on the door say No Personal Items, but the patient is supposed to bring a blanket, a pillow, and headphones. And a sign says No Food or Drink. We ignore that one, too?
He shrugged, smiled, and changed the subject:
Meanwhile, what can I do for you? (Emphasis on “you”.)
I asked if he knew of any caregiver support groups in our city. I desperately need some talk therapy.
He turned to his computer and did a Google search.
There are several online dialysis support groups, but I’m not seeing any in-person ones. You could sign up for one of the online groups.
I’m on computers all the time at work and good portion of my time at home; I want to sit down with real people and have real conversations.
I hear you. I understand. I’ll keep looking. Meanwhile, take me to meet your wonderful husband.
We donned lab coats and went to Ben’s bedside, where Linebacker continued his stream of we-care BS.
Am I cynical? Yes, I am.
Wednesday morning, we arrived with the heaviest blanket we own, a pillow, and a snack. Ben sailed through dialysis without once threatening to leave. The first time could have been just as smooth if we had been given the information we needed.
This afternoon we expected to get a call from the hospital about Ben’s surgery time for tomorrow. We got the call, but it wasn’t what we expected. Instead of an arrival time, we were told the surgeon has a very heavy schedule and doesn’t want patients to be given arrival times. Say what?? Someone will call tomorrow when the doctor is ready for Ben.
How long will it take you to get to the hospital?
I was completely perplexed but answered:
If traffic isn’t heavy and I don’t have to ride around looking for parking, a minimum of 30 minutes.
Hmm, well, you’ll have to hurry. Be ready to leave at any moment.
Wait, this makes no sense. Ben’s diabetic; he can’t go without eating all day.
It’s possible his surgery will have to be rescheduled.
No! He’s missing dialysis to get this surgery.
Listen, the doctor’s office called and gave me these instructions. If you have concerns, call them.
I did.
Jessica, the doctor’s surgery coordinator, had no idea what I was talking about.
I haven’t called the hospital and told them not to schedule surgeries. That’s crazy. Let me see what’s going on and I’ll call you back.
She did.
Right before going into surgery this afternoon, Dr. C got a call about an emergency case that will be flown in early tomorrow morning. He has to do that surgery before any others. He notified the hospital’s surgery department but didn’t call me. It’s a very complicated surgery. No way to know how long it will take. And there’s another urgent surgery before your husband’s. Your husband’s surgery is neither an emergency or urgent. Unfortunately, he’s the low man on the totem pole tomorrow.
I’m sorry I didn’t know about all of this. You’ll just have to wait for the hospital’s call tomorrow. Oh, because of the delay, your husband can eat breakfast before 7 am but nothing after that. He can only sip enough water to take his medication during the day.
Great. Just great.
Sadly, I should be surprised, even shocked, but I’m not.
American healthcare is an information void in a world teeming with information. How is that possible?
© Dennett 2023
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