My home away from home many years ago, that is. One fact about hospitals that has changed a little bit since then, I think, but not yet enough, is that they are organized around the convenience of the staff, not the comfort or even the welfare of patients, except in the grossest respects.
Starting the first night after my surgery this became obvious. At irregular intervals there would be a storm of bells, three or four going off at once. It took me a couple of days to figure out that this happened when somebody hit the call button for a nurse. Usually they ignored them for several minutes, at least, so the people would hit them again setting off more bells. I believe many hospitals have gone to silent call systems now. There was an unpleasant odor that I interpreted as burned popcorn, which I believe was benzyl alcohol. With Mr. Karakov talking in his sleep and having the occasional crisis, sleep for me was pretty much impossible.
At four o'clock in the morning, a man came to take blood from my arm. He was efficient and skillful with the needle, but he caressed my forehead and shoulder for his own pleasure, and I was too weak to protest. That's right -- I was sexually assaulted twice in 24 hours in A Major Teaching Hospital of the World's Greatest University. At five o'clock, two nurses came in to weigh me. How can you weigh me, I protested, I can't get out of bed! Not to worry, they had a device which would jack me up in the air if they could get a sling under me. This involved rolling me back and forth. They counseled me to give myself a shot of morphine before they started. Hanging in the sling, I was bent back at the waist, and I yelled despite the morphine.
The nurses agreed that what they were doing was insane. The doctors had ordered it so that they would have the results in time for their morning rounds at 6:00. That also accounted for the pre-dawn blood-letting. Why the hell did they need to know my weight? They were concerned about my fluid balance. "Do you want to know if I'm dehydrated?" I asked. "Okay, I'm dehydrated."
This system has not been changed. The attendings or chief residents take the house staff on morning rounds at 6:00 am, and they need the biological data in advance. So patients are awakened in the middle of the night. This is so obviously wrong, in fact abusive, that I've thought of starting a political movement to end it.
I once interviewed a man who spoke only Spanish. The doctors would gather at the foot of his bed every morning and discuss him in incomprehensible gibberish. When his daughter got off work at 4:00 in the afternoon, she would come by and call his doctor on her cell phone, and then report to him, with whatever degree of accuracy, what he told her. They did the same thing to Mr. Karakov except that he didn't have a daughter to talk to his doctor for him, which is why he ended up with no idea what was happening. This is a fundamental violation of rights and human dignity, of course, but it still happens routinely. I don't think it occurs to anyone to bring an interpreter for morning rounds -- or for that matter to schedule them at a reasonable hour for the patients' sake.
Now, most of my nurses were absolutely wonderful. There were really only two exceptions -- the episode with Mr. Karakov, which I have already reported, and one other that happened to me, which I'll get to. A friend of mine, who is a nurse, refused to believe the story about Mr. Karakov. Nurses just don't behave that way, as far as she was concerned. Well, that one did. But she was an exception.
However, nurses don't run the hospital, doctors do. And too many doctors, as far as I'm concerned, are similar to airline employees, who view the customers as a major nuisance that they would be better off without. It would be better if the planes just flew from city to city, or the bowels got resected, without having to put up with those annoying human beings. Once I had a resident move in upstairs from me, and he actually told me that he preferred the people unconscious, so he didn't have to talk to them. (I only revealed my profession to him later.)
Friday, August 20, 2010
Back with more gripes about the hospital
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5 comments:
this rings true to me. my own hospitalizations were at age 6 [weird blood condition; i was apparently a case study, but it was frightening and horrible]; age 29 [c-section]; and age 31 [vbac, but i was in for a week before giving birth, on drugs for premature labor, and i wrote all the mistreatment off to it being a military hospital overseas, so no way could i sue].
the more relevant anecdote is that when my nephew was struggling with brain cancer 1999-2002, he was often hospitalized at a wonderful children's hospital [also a teaching hospital], and i tried to visit every day or 2. usually, i went before work; and being a caring hospital, they let me in outside of visiting hours, even in PICU.
the thing that shocked me was morning rounds with the residents. of course, alexander had been poked and monitored during the night -- just as you describe. but the residents would gather round the end of alexander's bed and have this big old discussion of him, right there. they were a little more discrete when he appeared to be conscious, but a lot more loose when he appeared otherwise -- even though his mother was right there. in PICU, we could also hear the discussions about everyone else on the ward.
the comments of people who are learning are not always totally helpful to patients/family, you know? i saw that disregard of patient/family needs as a serious problem, even though i think this particular hospital is top-notch.
alexander's oncologist at first struck me as abrasive and even hurtful. this was a fairly long relationship, though. she is my all-time medical hero for the lovely, caring way that she broke the news to alexander's parents that she could do no more. she asked them to invite me for support; she had the whole medical and family support team there; she served tea personally. she was both factual and caring. during alexander's final coma, at home, she came for a visit, and stayed up into the night making food with his parents and brothers.
Sometimes physicians can seem a bit brusque, I think, because a) they've seen it all before, even though it's shocking to us and b) they have to manage their own emotions and not burn out so many of them adopt a distancing strategy. It's very difficult to be empathetic all the time when kids die on you -- somehow you need to find a way to care, but still let go. I completely acknowledge that it is a difficult job.
* i'm not a blood relative of alexander; he adopted me as his auntie, and his mom introduced me as such to hospital staff.
* this anecdote spills well into my oft-stated concerns about end of life care. alexander's oncologist urged his parents to go with palliative care, rather than invasive measures that would only hurt and prolong suffering. "he has suffered so much," she said. and that is what they did.
Watching my father in the hospital in the early 90s and my mother just a few years ago, it became obvious to me that patients need advocates around them whenever possible. I'm not sure why hospitals have evolved to become these crazy places where the needs of patients take a backseat to the needs of doctors and staff, but they have. It reminds me of working at the university, we used to joke that it would have been the greatest place to work, if there had been no students. Amazing how a facility's raison d'etre also becomes its most annoying aspect for the employees. Really good caring and supportive service takes an aspect of human kindness that must be available in infinite amounts to do the job well. Precluding that, patient advocacy is a must.
I may have mentioned this before, but a friend of mine worked at Fernald in Waltham MA. One of the residents was diagnosed with terminal cancer. The doctors had a conversation about that fact in front of the client, speaking to each other, not him, and that's how he found out that he was dying. He understood what they were saying perfectly, but because he himself couldn't speak, they treated him like an animal of a different species--a dog or a cat--which cannot possibly understand what is being said.
So the resident is back a the facility and acting out. The staff--who know he is terminal--can't figure out why he's misbehaving so badly. My friend finally steps in, asks him if he's upset about something the doctors said, and he is so grateful that someone understands, he clings to her.
The story only gets worse from there. His death released him from pain, and my friend's move to a new facility has opened up a whole new world where people actually care about the residents and pitch in to work willingly.
But the point is that the doctors seemed to equate an inability to speak English, to the patient being non-human in some essential way.
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