Principal Lecturer (Head of Primary Partnership)

Principal Lecturer (Head of Primary Partnership)
CASS School of Education - University of East London / Date of entry: 14/12/09

Lecturer in Statistics (2 posts)
Department of Statistics - London School of Economics and Political Science / Date of entry: 14/12/09




I think this post might be a mixed bag.part rant, part reflection, part I-don’t-know-what. I’d meant to post something a week or two ago about how you get to know people in the wee hours of the morning and somehow it never got written.

As most critical care folks know, baths are primarily a night shift thing. I don’t necessarily agree with that, at least not in the case of folks who are alert and oriented and can do at least some things for themselves, and especially not if they want to SLEEP! But if they are wakeful, as many older folks are along about 4 or 5 in the morning, sometimes it’s a good time for a wash-up and a bed change. There’s something about the process of doing all this that invites conversation and recollection. I’ve always been one who likes to listen to stories, so maybe I’ll ask the patient a few questions, and often the stories just pour out. Maybe they’re tales often told but now to a new audience, or maybe the patient hasn’t had anyone to listen to them in some time. In recent months I’ve heard stories from a World War II bomber pilot, mostly about the base in England where he was stationed rather than about his missions.most veterans don’t want to talk about those in specifics.and from a man who was a medic in the Korean War. I’ve learned what it was like to be a very young bride just after WWII. I’ve delighted in the stories of a woman who was one of eight girls in a family of eleven children, and laughed with her about what it was like to line up to get your hair braided in the morning.(”You’d better have the knots combed out before you got to mama, and the bigger ones combed out the little ones’ hair.”) Everyone has a story, and I find myself making little notes of things I might want to remember if I ever stop doing other things long enough to sit down and write seriously. But I have to admit that I don’t like being *expected* to give those baths whether the patient wants it or not.

Last night my partner and I had a couple of very “busy” patients. Hers was far busier than mine and far more sad, a woman dying of ovarian cancer, a retired nurse, sister of one of our docs, scared, in pain, disoriented because of some of her medications. I think she would like to let go but thinks maybe her family isn’t ready. She’s DNI–do not intubate–but not yet DNR. My thinking is that she might be ready for hospice, but I am not so sure about her family. Last night I sat with her for a few minutes while her nurse went to get something for her, and we talked about grandchildren, which seemed to divert her fears at least for a little. Stories.

About my patient, I don’t know whether to be sad or very, very angry. He came from a nursing home, and the story is that he was essentially “dumped” in our ER from a handicapped van, emaciated, with a leaking, corroded, non-working feeding tube. (Those don’t get that way overnight, folks!) The feeding tube was replaced and the area cleaned up and he was sent up to us. Okay, so he has a history of alcoholism and smoking and respiratory failure and lung cancer (chemo and radiation), and he has a trach so he can’t make himself heard.but how did he get to his current state just since April? He told me he used to weigh 198 lbs; when he came to us he weighed 100. He looks like a damn concentration camp survivor! To me the damning evidence is the condition of the feeding tube when he was admitted. I know nursing homes are understaffed, and that so many of the workers are undertrained and overworked, and many are burned out, but surely *someone* should have noticed and referred him to the doctor. Did he just not get attention because he’s quieter than some of the other patients? He’s perfectly alert and oriented and can make himself understood if you just take the time to pay some attention. Did they keep pouring tube feeding formula into the tube and letting it go who knows where, or did they stop just feeding him because the tube wasn’t working? Who let it get this bad? It’s a pretty damning indictment of this particular nursing home, at least in my not-so-humble opinion. I don’t know what family he has, a sister I think but no one immediately available, so it seems there is no one to advocate for him. For now I just have to do what I can, manage his meds and his feedings, keep him turned and dry and clean, and hope to hell someone picks up the ball that got dropped. I need to remind myself to hunt up a clipboard for him tonight so he’ll have a surface he can write on when he wants to tell us something.

What would you do to someone you love?
I’m just off working 6 nights out of 8 (well, yesterday, actually, but was too tired to write anything), 5 of them in CCU, and the one thing I took out of there is a question.why must people subject those they supposedly love to horrible things? I know the conventional wisdom is that it’s because they are poorly educated by the medical establishment, but things I have seen over and over belie that statement.

This particular case was a man who came to the ER in respiratory failure, but with so many other problems that he was almost a one-man Merck manual. Diabetes, end-stage kidney disease, peripheral vascular disease, and chronic obstructive pulmonary disease were just the high points. He’d recently lost one leg above the knee because lack of circulation led to gangrene, and the suture line looked horrible, dead for an inch on either side. The other leg was looking pretty much the same way, necrotic just about all the way around the calf. Necrotic areas on the fingers, too. Decubitus on the sacral area darn near to the bone. He’d been getting tube feedings but hadn’t been tolerating them, so they were suspended. He’d been on the vent long enough to be trached and for the trach to be nice and solid and not draining any. He was barely responsive, only withdrawing to painful stimuli, would open his eyes at random but didn’t track, didn’t follow commands and barely moved at all, certainly not purposefully in any way except for the withdrawal. A recent EEG wasn’t flatline, but showed diffuse slowing, in other words very little brain activity. Most of us would call him “dead on the vent.” His family (wife and numerous kids) has been told, in very blunt words, that there is no hope of recovery, that he’s not really in there, yet they don’t seem to get it. “But he opened his eyes and looked at me!” (No, he just happened to be turned that way) “But he moved his hand when I touched him!” (He withdraws from all touch) So we continue to maintain him on the vent and on dialysis three times a week, and we do all sorts of things to him, many of which are painful.and pain is the only thing that seems to reach him. Why? I think the short answer is “because we can, therefore we have to.” Nobody, least of all the family, seems to be looking at his quality of life, and no one will make the decision to do the compassionate thing, to stop all the painful treatments, stop his dialysis, keep him comfortable, and let him go peacefully. After all, his heart (an electromechanical pump) is still beating, and could go on beating for a long time, even if his brain did go flatline, so he’s “alive.” Right. Lying there rotting while a machine breathes for him and three times a week another machine filters toxins from his blood because his kidneys don’t do that any more. Where’s life in that?

I have informed my children if they even consider doing such things to me when I can’t protest, I will sit on the heads of their beds and haunt them for the rest of their natural lives. Think about it. How much would you torture someone you loved if you knew there was no hope of recovery? And if you haven’t already done so, make your advance directives so no one will do the same to you.

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