Text Patterns - by Alan Jacobs

Thursday, April 8, 2010

off-topic medi-blogging (slight return)

So I spent some time in hospital last week — I’ll say a little more about the details later — and a slow recovery will mean that posting will continue to be limited around here for a while, and perhaps a little more link-heavy than usual. But I want to deviate from the topics of this blog, for a post or two, to comment on what I saw in the belly of the health-care beast. I think it will fit the general New Atlantis mandate, if not that of Text Patterns more specifically.

I was admitted to Central DuPage Hospital late on Wednesday night, March 30th, and sent to a room on the fourth floor. My roommate was an elderly man I’ll call Mr. H. I later learned that he is a retired teacher in the area who suffers from both Parkinson’s and some form of dementia, but who was in the hospital for some other reason. I think he may have had pneumonia. It soon became clear that his wife cared for him full-time, wholly, and without any substantial assistance, and whenever she wasn’t around he was quite simply a lost soul. He called our her name over and over, in a keening wail, throughout the night, and kept trying to get out of bed, which set off alarms. (In the meantime she, poor lady, was probably getting the first night of real sleep she had had in some time.)
It’s almost impossible to sleep in hospitals — the ceaseless rounds of nurses and techs ensure that — but this was worse than usual, so the next morning I asked to be moved, and was graciously accommodated. Before I went I was pleased to see that Mr. H.’s wife had returned, quite early, and was comforting him, playing cards with him, and gently making sure the nurses gave him his Parkinson’s meds on time.
For a wonderful sixteen hours or so I had a room to myself, but then in the middle of the next night the staff wheeled in a new patient — another elderly man whom I’ll call Mr. P., suffering from a range of difficulties: kidney disease, a concussion from a fall, dehydration from diarrhea. Mr. P. was not demented by any means, but was quite deaf and had malfunctioning hearing aids; plus his concussion had disoriented him. Helplessly, I listened as he told one story to a nurse, another to a gastroenterologist, still another to a neurologist, in response to questions that he only sometimes heard and still less often comprehended. It was almost impossible for anyone to penetrate the tangles and discover what his real complaints were, why he had come to the hospital, even how he had come to the hospital.
Mr. P. had three daughters, one of whom, I think, had simply dropped him off at the emergency room because she was too busy to care for him. Over the next couple of days two of them came by, visited briefly, complained about the poor care he was getting — in fact it was as good as it could have been in the circumstances — and then left. After their departure he tended to be even more confused than usual about why he was there and what was being done to him.
Eventually I decided that I needed to speak up for Mr. P. When things went awry — say, when he wet his bed — I called the nurse; during several interviews with doctors and nurses I spoke up across the curtain to correct his inadvertent misstatements or provide additional information; once I stopped a tech from giving him a cup of coffee because he was supposed to have nothing by mouth that morning. (He had an early endoscopy scheduled.) He said the doctors hadn’t told him that, but of course they had, and it was written on a writeboard in the room; the tech just hadn’t remembered to check. I had just met the doctor who was to give him the endoscopy — he looked in on me as a representative of my own gastroenterologist, since they worked in the same practice — and told Mr. P. he was in very good hands, which encouraged him.

Maybe I was butting in, though no one complained. I really didn't need to be dealing with Mr. P.’s problems — I was a pretty sick puppy myself — but it was clear that I was the only possible person to be an advocate for him in a tough situation.

All of our recent debates about the American health-care system, it occurred to me, had been about availability and cost — about getting into the system and getting out again. But when you’re in the midst of it, it’s an incredibly complex, convoluted, murky system to navigate. There are overlapping levels of responsibility among many different medical personnel, and it’s rarely clear who’s in charge. In his more seriously compromised condition, Mr. H. had an advocate: his wife; but Mr. P. had none at all. By the time I left I think his situation was clarifying — he was soon going to be transferred to some kind of rehabilitation center — but I still worry a bit when I think about him. Whoever pays for it, and however they do so, the health-care system remains a dark wood in which it is very easy to get lost.


  • Yes.

  • Oh, absolutely. Cost and availability are sort of the easiest and most obvious aspects of the health-care system to engage with, and I'm glad we are engaging with them, but the money sure wouldn't bother me so much if it seemed like we were getting some customer service for everything we paid. My wife and I are both self-employed, and she handles most of our insurance paperwork, because she used to do a lot of work with contracts. The sheer amount of time she spends on the phone if we need to change our coverage, or if one of us goes to the doctor, is staggering.

    And then there are the facts that, after all the time and energy, and all the premiums we've paid them, our insurer still might elect not to cover something (and there's minimal legal recourse), and that the care itself can be miserable. She had knee surgery a few years ago, when we lived in New York, at Mt. Sinai, and was dropped twice, hard, afterward by two different nurses, among other things. It was astonishingly atrocious.

  • I wonder if this sort of experience is really created by the big-ness of institutions, something not unique in this sense to hospitals - though they certainly have an acuteness given our vulnerability in those situations. And the very real difficulty here is that you do get better care from such big institutions precisely because so many different people with such specialized expertise can be involved, but the more of those resources you have the harder it is coordinate and monitor them to ensure that they work properly.

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