Canthook

Em was an RN. There's nothing average about an RN, of course, but Em wasn't an average RN. She even wrote a book on pharmacology, used in nursing schools, but that wasn't what made her very special as a nurse.

Most nurses work for the hospital, or work for a doctor. Em got paid by the hospital, but she figured she worked for the patient. You'd be surprised how many nurses have patient care as a vocation. There are a lot of great nurses out there. But Em, she treated patient care as a sacrament.

I can still remember her, a couple of decades later, phoning the Senator. Her patient needed oxygen, Medicare had turned the patient down flat, and Em was enraged. Usually, she talked to one of the senator's staff when Medicare had been balky about questionable cases, but there wasn't anything questionable about this case. She wasn't willing to talk to a staffer this time; she wanted to talk to the Senator himself.

This man is a member of the United Food and Commercial Workers, she explained. The UFCW is one of the most militant of the labor unions. Oxygen isn't optional, she explained. He can't walk the width of his mobile home without oxygen, she explained.

And if he didn't get Medicare to straighten up and fly right within the next day or so, her next move would be to visit the local TV stations with her patient, illustrating his need for oxygen, and explaining that the Senator had been unwilling to step in to get Medicare to do what it was supposed to do.

He acted, of course. I suspect that his staff actually did the work, but within 24 hours, we got a call back saying that Medicare had reviewing the case, and was approving the oxygen. Em never went into battle mode unless "being reasonable" mode had already failed, and unless she had checked out all the facts, and they were on her side.

God, what a woman! Blondie is jealous, at times, that our long-haired German Shepard, Marie, seems to favor me, but she really doesn't know what to do about Em. It's hard to compete with a dead woman; her faults are forgotten.

Every little thing seems to remind me of Em. Today, it was a post by Francine Hardaway that talks about Doc Searls being in the hospital. Doc had a heart problem earlier this year - Economy Class Syndrome, if I recall - and has been in the hospital for the past eight days, receiving care of questionable quality. Francine writes:

But I, as the widow of a physician, a mother, and an unlicensed practitioner of American healthcare system mechanics, want to use this moment not only to wish Doc the best, but to draw a lesson: NEVER GO TO THE HOSPITAL ALONE. Take an advocate with you, and try to make sure that person is a New Yorker and very aggressive. Ask a million questions, and get your loved one the attention he/she needs.

I have to agree with her about going to the hospital alone. Em wouldn't allow me to do that.

One day, I was recovering from a procedure, and there was a mechanical problem with the line that ran from my drip into my veins: nothing was flowing. A few minutes later, my nurse came into the room, and Em pointed out the problem. The nurse fumbled with the plumbing, and one end fell onto the floor.

"Oops", she cried, stooped to pick up the line, and quickly jammed it together. Em stepped in front of the nurse, jerked the line apart, and proceeded to scold the nurse.

"You know better than that!" she cried, "Once it drops on the floor, it's not sterile." The nurse blushed, and lowered her head, muttered an apology, and replumbed everything from the sack of fluids to the heparin lock on the back of my hand with new, sterile, components.

Later that day, Em had left for a few moments when the nurse entered the room. I started to apologize to her, but the nurse wasn't having any of that. "She was right. I don't know what I was thinking. Brain fart. It wasn't sterile once it hit the floor, and it needed to be replaced."

Oh. Wow, I thought. But this is what Francine is talking about, when she says "a New Yorker". It looks like being rude, but it isn't, not really, not when you're advocating for another.

I was involved in a bad wreck in 1996, and Em was no longer in the picture, but I was keeping company with an RN named Kay. Normally, someone spends less than 48 hours in the Intensive Care Unit - either they are stable enough to move to a regular floor, or else they die. I was in the ICU for 8 days. Kay wasn't quite as New-Yorker as Em would have been, but finally, Kay pulled the doctors aside and said, "Look, he's not well enough to go to a regular floor, but if you don't do something about nutrition, he's not going to get well enough to go to a regular floor."

When Kay arrived to visit that day, I told her that they came by with a paper for me to sign, so they could put in a "central line". They tried their level best to scare me, I said, and they'll be back in a few minutes to put it in. Should I have signed? She nodded, and told me the central line was for parental feeding, that it's something they really don't need to do, but that she bullied the doctors into doing it for me. "Do you still want me to live?" I asked, and she nodded. "Yes, but more important, if you were supposed to die, it would have already happened." She was one of several nurses that kept telling me that God must have plans for me. They said they'd never seen anyone survive so long with injuries as bad as mine, so God must have a reason for that.

I did some advocacy for myself. I asked the doctor for Klonopin, because I was having trouble was anxiety. He said sure. The next day, I asked again, and again, he said sure. The third day, I asked if I wasn't getting Klonopin because it interfered with something else I was taking. He said no, he'd ordered it, and I should have been getting it. He investigated, finding that the nurses phoned in the order, and the pharmacists had provided Clonidine instead. Clonidine is a blood pressure medicine which surely wouldn't do me any harm, but it didn't do anything for my anxiety.

A couple of years later, I was in the hospital by myself, for depression, and the nurse came in one evening to give me a shot. Curious, I asked what the shot was, and she told me it was haloperidol. Haloperidol is better known as Haldol, a drug for schizophrenia, although if I'd not been married to a nurse, I probably wouldn't have known that. Hmmm, I said, could you tell me which of my doctors ordered that?

She couldn't find the order for the drug on my chart. She went back to the nurse's station, and did some research. It's a good thing you asked, she said. This drug wasn't prescribed for you. It was prescribed for the patient in the room across the hall - and the orders said to give the shot forcibly if the patient refuses to cooperate. The clerk for the floor had made an error in transcribing the orders. Getting Clonidine isn't likely to be dangerous for anyone, but Haldol isn't even all that safe for those who do need it.

I met a really great guy while in the hospital for depression, a guy who couldn't stop moving his arm in a circle. Tardive dyskinesia, they call it, he said. I suspect it's driving you crazy to see me doing that. Let me assure you, he continued, that if it's driving you crazy, it's even worse for me. Tardive dyskinesia is a side effect patients sometimes get from Haldol, and it doesn't stop when the patient stops taking the medication. Ouch.

Em had plenty of stories and the thing I loved most was to sit together and listen to her talk. She often repeated the one about her grandmother, which I'm reminded of from watching a "blooper shot" tonight that included a fishing host - Babe Winkleman, if I remember correctly.

The host had a rod in his hand, and was talking to the camera as he came around the pickup bed. You need to be very careful of, uh, you have to be careful of something, but the host wasn't careful about the trailer hitch on the pickup. He barked his left leg into the hitch, just below the knee, and it was obviously a quite painful injury.

Bleep, Blondie said. I'm going to have to watch golf the rest of the season without Tiger, and who knows what he'll be like next year. He may never play golf again. He could run for vice-president, I said. He's smart, he responds well to pressure, he's probably a great negotiator - and since he can't golf this year, he might as well be campaigning for vice-president. Either party would surely be very happy to have him.

He can't run, Blondie said. I gave her my dumb stare, and said, sure he can, he's a natural-born American. Yeah, Blondie said, but he's only 32. Rats. You have to be 35 to serve as President.

In any case, Em's grandmother was getting ready to fly to California, to visit her son who lived in La Jolla. She was walking around the car, to be driven to the airport, when she tripped over the trailer hitch on the car, and she broke her leg. They picked her up and rushed her to the hospital where her leg was splinted and cast. "This is God's way of telling me," she pronounced, "that I'm not supposed to go visit Bob in California."

Em's dad, a wiry coot that I loved dearly, had a keen sense of the absurd. "If he's going to talk that way, he doesn't need to tell me anything".

I'm told that he paid dearly for that comment, for the rest of her life. Em's dad didn't attend church very often; it usually took a hitchin' or a plantin' to get him through the doors. I didn't hold that against him.

One Sunday morning, he took me out with him in the fishing boat at Loogootee. I wasn't much of a fisherman, but I tried to be a good son-in-law, and it seems to me that I actually caught a couple of redear that morning. I'd always heard that you shouldn't talk when you're fishing, because the fish could hear you, but he didn't seem to think that kept them from biting. He told me that same story, from a slightly different point of view.

Then he said, "I don't think God wants me to be in a house made by man this morning, when I can be out here with God." I nodded. He knew my family went to church regularly, that my mother had been a church organist for decades, and that I had been in the church habit, too, until I'd married Em. I think he wanted me to approve his lack of attendance.

"It's beautiful out here, isn't it?" I commented, and it was his turn to nod. I told him that I figured he was a pretty good steward of God's earth, and that he seemed to be living pretty much the kind of life God wanted him to live, and if someone wants to sit in an uncomfortable pew, wearing uncomfortable clothes, listening to the uncomfortable sound of the fat lady singing, fine for them, but there's more than one way to honor God.

I haven't figured out exactly what God's "special plans for me" amount to, if it's anything more than telling people that, like any other father, God just wants them to be happy. But there are so many preachers out there, trying to make people hate, trying to make people unhappy, maybe that's special enough.

This started out as an essay on how to be a good patient, telling you that the best patients, the ones that get the best outcomes, aren't the ones that lie back and let things happen to them. You need an advocate. If you're strong enough, and knowledgeable enough, and you're willing to be "a New Yorker", possibly you can be your own advocate.

But most people can't. Find someone bold and brassy, and savvy enough to recognize good care when you're not getting it. Something like 300,000 people a year die from "iatrogenic disorders", meaning that their medical care actually killed them. It's important that you get an advocate, and if some college was smart, they'd train people so that you could easily hire a bold, brassy, savvy patient advocate. But make sure you find someone that'll keep you from joining those 300,000.

Other Bloggers On These Subjects:
advocate - central+line - Doc Searls - fishing - Francine Hardaway - God's+plan - hospitals - iatrogenic illness - medicare - medication mistakes - oxygen - parental feeding - Tiger Woods