The Patient Is in the Middle


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Photo by Piron Guillaume on Unsplash

October 6, 2018

For the past two years we have been regularly immersed in the medical monolith occupying the central part of our city. This section of Anchorage has been multiplying exponentially for several years, with buildings popping up almost overnight. Whole blocks of town are now a contiguous medical community.

Individual medical facilities are appearing around the city as well. This reminds me of the behavior of the bane of life in Anchorage, the cottonwood tree. It sends out suckers in all directions from which spring up other trees.

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As I watch this growth, I wonder what drives it. Are Alaskans extra sick? Do they hurt themselves more often than people in other places? Do we not take care of ourselves very well? I have often said that Alaska has many creative ways to die. I don’t know. I just know that medical facilities have taken over whole connected sections of real estate. This article is related to another area of the state, but it generally applies in our town.

One thing to consider is the costs. When I was hospitalized over two years ago, a cardiologist and an ER physician each told me medical care in Anchorage was more costly than anywhere else in the country. Each slightly hung his head as he spoke. But here is where we live. Insurance companies. Medical businesses. Co-pays. Jargon. What will be covered and what won’t. The patient has little to say.

The patient is in the middle.

I have discovered that medical offices are siloed. My two primary caregivers the last couple of years have been a urological office and a kidney clinic. The two conditions I have with prostate and kidneys are highly related to each other. The treatment centers are not. I am not sure they speak at all, but they do know of one another vaguely.

Neither of these offices seems to know what the other one is doing until I report it myself during a visit. I so wish there was an office that had integrated service. That is, doctors from different disciplines related to my case, talking with one another and consulting about proposed means of dealing with related diseases. That does not seem to exist. Here follows a glaring example.

Several months ago the urology physician decided I had arrived at a place where we could probably remove my indwelling catheter. I could self-cath if there was difficulty at the first. OK, I said we’ll try.

It did not go well. When it came time to do business, the natural equipment just would not work. The sphincter muscle stayed stubbornly shut. I suppose that could be expected as one result, but every time it resulted in swelling, aching pain rising from the front sides of my abdomen around the back and right up toward the kidneys. For 48 hours I experienced this every time. Obviously to me this was not a good thing.

Two days later I went back in and told them it was not working and I was afraid of damaging my kidneys. So, it was back to the catheter. Immediate relief ensued.

The next week I was at the kidney clinic. I told the Nurse Practitioner what happened. My creatinine level had spiked, and my GFR number had gone down by 10. This is  significant and put me on the teetering edge of dialysis.

The first question out of my Nurse Practitioner’s mouth was “What in the world are they doing over there at that urological clinic?“ It took only 48 hours to do considerable damage to my kidney function. There had been no consultation.

Well, here’s one thing this patient says: We will never do that again, unless I have substantial margin in my kidney function to allow for a possible degradation.

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Photo by Alex Iby on Unsplash

The patient is in the middle.

Last summer I had a severe case of sciatica. I’m grateful to God that some shots in the lumbar area took care of the pain but there have been tests and neurological conduction studies to find out the source of the pain and resulting weakness in my legs.

They referred me to a local imaging clinic to get an MRI on my pelvis. Everything went fine. As I was leaving, the front office people said this MRI will be sent to your doctor this afternoon. Great!

Nearly 2 weeks later, the original spine surgeon office called me and said, “we want to schedule you for a pelvic MRI”. They mentioned the clinic to which I had already gone. I asked why the doctor needed a second MRI? The young lady said she did not know, and would have to ask him.

One or two days later I got another call. They said they never got the MRI.

The patient is in the middle.

A couple of months ago I started a chemo regimen, much against my normal outlook on chemo treatments. The first three treatments had numerous communication issues, which delayed the progress of my treatment for up to an hour each time.

The infusion center would say that my oncologist failed to send the labs, or the order was not complete. They were concerned about my creatinine so they would call that office and try to find someone who would say was OK to do the treatment with elevated creatinine, and to track down the labs.

The third time they said they never got the labs. This was after the oncologist said the labs would be faxed over within 15 minutes of our visit. When I was there for a treatment, they told me “we never got it“. Same thing they said before. They called my oncologist. The person answering the phone said “We don’t have those labs.” This after saying they’d fax them over, and after showing them to me at our visit.

The infusion people took the copy I had fortuitously brought and faxed it to themselves. It showed up immediately in their machine. No fax problem, at least that day.

My next visit with the oncologist, I told her about the communication problems between the two offices, the fact the infusion people did not get the labs, and that I wanted to always hand carry the labs and the orders from now on because I didn’t trust the fax system. Neither did I trust the office people to do the job.

She said she always faxes them immediately. She referred all the responsibility to the infusion center for not having an organized way to collect faxes and who in fact said later on they found the fax in a big stack of paper. Meanwhile, the infusion center people referred all the responsibility to the oncology office. Each seemed to be saying, “We do it right; they don’t.”

The patient is in the middle.

A while back we were talking to a friend of ours who has been in the medical field for a long time. She’s a nurse. She said my regular doctor needs to be integrating and monitoring everything that is done in my case. That was news. So that’s why they always asked me who my regular doctor is. I never knew why. Nobody has ever told me I need a single doctor keeping tabs on everything.

I reflected on it. My doctor sees a stream of patients morning, noon, and evening. When would she ever have time to monitor every patient’s medical records who has treatments or interactions with more than one medical office? It doesn’t seem possible.

In the two years, she has never called me to ask about anything being done, or make any recommendations about not pursuing this or pursuing that. I frankly don’t think it’s possible. Unless she no longer doctors patients and just does this.

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The patient is in the middle.

How about one more example? Imaging. I have learned the urologist, oncologist, and spine surgeons are not interested in the images, even when I tried to get them to view them. “The radiologist interprets them, and we go by their interpretation.” Okay. But don’t pictures reveal more than one person’s arcane report, especially by someone to whom my case is completely unfamiliar? What the radiologist sees may have been there for months, and it’s new to him. Could not the doctor view the images in connection with the report? “Oh, yes, I see what they are describing. This is not a serious as they seem to believe.” Combining those would seem to give the doctor a clarity that would lack going only by the words.

Not interested. My chiropractor took much more time examining my first MRI, with the images on a giant screen, where he could explain things to me. The doctors were cursory, wanting to keep things moving along.

You know my mantra for this article by now; I won’t repeat it.

These experiences have reduced my confidence generally in medical offices. Lack of communication, forgetfulness, and being far too busy to dial in on details. There is more which I have not reported in this article.

Each office zeroes in on their specialty, and seems unaware (hopefully not uncaring) of other stuff going on. What if the medication one prescribes is not compatible with what the other one prescribes? That’s up to me to figure out or go out asking questions.

Does this mean I don’t like the caregivers? No. I like all that have dealt with me. But I don’t like how modern medicine runs. There is no integration, or very little.

I don’t like being the patient in the middle, often wondering just where I stand and what might be missed. I am a loyal repeat customer, but there seem to be diminishing returns.

Have you had similar experiences? Why not tell them here in the comments or on my Facebook page? Maybe this doesn’t happen in other towns and cities.

I rejoice in the fact that God is my primary caregiver, and I appeal to Him on that basis! And I’m grateful for the places that are different.

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