Posted by: Kate | April 7, 2010

Communication is for People, Not Lumps

My nurse came in, all excited.  “Your hematocrit level went way up!  It’s looking a lot better!”

I nodded politely and asked her what that meant in terms of discharge.  She didn’t know.

Later, a different nurse – one that had treated me a day or two ago, so I knew her – came in with a big smile.  “Have you heard?  Your hemoglobin level is just so much better.”

I smiled at her, thanked her for the news.  I asked if she had heard anything about a new discharge date.  She hadn’t.

I took a four-hour nap, to start trying to recover from two nights of damn near no sleep at all: four hours Sunday night and then very little and that not consecutive on Monday because, for reasons unknown, they do blood transfusions overnight here.  Not a big deal, except they have to have me awake every 15-20 minutes for a check of vital signs and of how I’m feeling… whatever the rationale, it requires me to be alert.  A lot.  Given my moods before and after the nap, I have to wonder just how many lives I saved by tuning out for so long.

My CNA , Lucas, who is from either Haiti or the Dominican Republic depending on when you ask and has an enormous crush on my mother (“You not de mudder!  You de sister.  Really?  You sure you de mudder?  No…”), bustled in to change my bedding after I woke up, and immediately announced, “Your blood levels is good.  You go home soon, eh?”

I blinked owlishly at him and asked if he knew that for sure.  He said no, he just thought maybe now that everything looked good, I could leave.

This happened several more times through the afternoon and evening.  I managed, through will I did not know I have, not to respond, even once, with, “Well, DUH.  I received two bags of blood last night.  Of course the red blood cell count went up!  The transfusion was done around 6:00 in the morning and the next blood draw was at 2:00 in the afternoon.  If my levels didn’t go up from before the transfusion and then stay up for eight whole hours, then I’m having internal bleeding so intense I’m about to explode.”

I wanted to, especially pre-nap.  But I didn’t, because these people were each at least bothering to tell me something.  That’s so not the fashion here.  Remember, here, we’re all just lumps in beds, with our input and output being measured in various ways.  Physical action and inaction of all sorts is documented carefully; emotional and mental interactions might be mentally noted but they are not rated high enough to deserve inclusion in one’s chart.

There is just almost no communication between staff and patient until it’s necessary; no status updates or reporting of lab results or just stopping by to check in and chat about trends and possibilities.  The very idea is almost laughable, though my sense of humor took a direct hit yesterday and is still huddled in the corner, glaring at me, resenting this whole, “Ha, ha, just kidding, no going home for you… and we’re going to deprive you of even more sleep!”

It doesn’t seem like a case of just not knowing how to talk to people; they’re all friendly enough, when they want to be.  And it doesn’t seem like a case of understaffing, no one seems overwhelmed or rushed here.  It feels more like they just aren’t used to involving patients in their own caregiving in a long-term acute care facility.

A part of me understands the logic.  At 32, I’m somewhere between 1/2 and 1/3 the average age of patients here.  It’s not a nursing home, but it’s a step between a hospital and a nursing home, and the vast majority of the patients are here for some form of, well, long-term acute care.  Meaning, they need hospital-level care but of a maintenance sort, not the procedures or advanced testing that a hospital would do.  Most patients go have something done in a hospital, come here to hang out for a while, then go (or return) to a nursing home.

The staff is used to very elderly patients, who need close physical attention but are often mentally unable – because of dementia or because they’ve just become sadly acclimated to being ignored already – to engage in what’s going on now, much less to talk about discharge planning or next week’s agenda or what’s in the news lately.  And these patients, even more sadly, often don’t survive their stay here, or die soon after their relocation.

So, elderly patients who aren’t especially good (anymore) with communication in the first place, lots of relocation, a high mortality rate… I can understand why they don’t much talk to me.  But then, on the other hand, I’m an exception to so many of the rules already.  Just look at me and see that I’m not 90.  See that I’ve got something going on behind my eyes.  Talk to me about my labs, and my prognosis.  I’m able to understand and accept that your best guess as to a discharge date does not equal a promise.

My doctor shows up when it’s time to tell me some major fact that he simply cannot continue to put off – or if I have told every nurse, CNA and other nametag-wearing individual I see that I want to talk to him.  When I get him in the room, there is often a sense that he has half his brain out the door already, so I need to be very prepared and clear before he comes in to get my questions answered.  He is somewhat of an exception to the I-don’t-really-know attitude of the other staff, just because he’s able to offer those guesses and prognoses that everyone else steers so clear of.

Today, he was also in the parade congratulating me for having a higher hemoglobin count, and I waited until his back was turned before rolling my eyes.  He said none of the scans have shown internal bruising, and my kidneys are working well, so the next working assumption is a low-level GI bleed.  Testing has commenced there, so we’ll see.

He said he’s thinking Saturday, for a discharge date.  I refuse to get excited about it this time.

But the rest of the staff?  No.  Lumps don’t get communication like that.  When I’m able to turn myself into a person – when I can find a topic that interests them, whether it’s TV or my kids or the cute little Nintendo DS that Jenny bought me – then suddenly they make eye contact and get interested in the words coming out of my mouth.  They tell me things out of their own head, instead of restricting themselves to reading off a chart.

It’s a brief thing, that return to personhood, and then it’s right back to lumphood for me.



  1. Hi Kate,

    Can I ask a question? Why don’t you show them this post, or a modified version of it. OK, so you’re a different kind of patient from the people they are used to. But they are trained care givers, so even if they are in a routine of working a certain way, they would have trained to communicate.

    It may not make any difference of course, but isn’t it worth trying? They may have another ‘Kate’ one day and may remember your frustration. Or if you don’t feel up to it, can some one advocate for you?

    It just seems that possibly with all the other reasons your healing is going slowly, this may be adding to it.

    Thinking of you.


  2. I was just going to say the same thing. Or maybe ask to talk to the supervisor & show her your thoughts. I think it would be insightful for them to know how their treatment is being perceived by their patients.

    Hugs to you!

  3. It’s very likely that I’ll write them a letter once I’m home, because I agree that I probably won’t be the last person with my general experience here. It’s very unlikely that I’ll write/say anything while I’m here, because I don’t want to rock the boat while I’m still riding it.

    One more thing to put on the to-do list…

  4. So, I heard your hematocrit level went way up. Good job!

  5. It’s odd, but what you are describing reminds me of how people talk about care within our system. There are many, many well trained, caring people, but they seem to get caught up with procedure, rather than ‘caring’. The only way anything anything will change is by complaining, nicely at first.

    You seem to be dealing well with the recognised power dynamic this engenders, but it’s not right, or comfortable.

    Good luck with whatever course you decide to take. At least this post makes a good letter: you won’t need to do it from scratch!!

  6. Grrrrrrr.

    Hang in there friend….

  7. I cannot imagine NOT talking with my patients, even the dementia ones. Makes the day go faster, for one thing! And everyone has their story, and I love to hear people’s stories, it’s the best part of my job.

    Ugh. Does this SNF have an ombudsman? Or a nursing director? Hearing your comments on their de-personalization of your care (and person) is shocking to me, to be honest…and saddening too.

    I sure hope the anemia is just your bone marrow taking its own sweet time to recover from the sepsis and also from pregnancy. Anemia of pregnancy and immediately after delivery is really, really common, but I suspect the sepsis has just knocked your bone marrow for a loop. Hope that’s all it is and that it recovers pronto! Hugs again from California.

  8. it sucks to be treated like that. From my experience the nurses and cna’s by law aren’t supposed to read the charts to you and definitely can’t give you a prognosis, and most of the time noone knows you’re going home until right before…..or until the insurance companies say so.

    Very, very frustrating

  9. Kate, my baby was hospitalized for two weeks in January, and they pushed back our discharge date twice, and I thought I was going to go insane. Then, on the day when we were finally supposed to be discharged, and everything was cool, the forecast called for 30+” of snow, AND Nathan started vomiting. I was literally shaking in fear that they would make us stay there longer. I am so sorry you’re still there. I’ve been at the beach this week and missed all the updates that you hadn’t been discharged. I will hold my breath and cross my fingers and hope and pray that your discharge is imminent…and go through my Nintendo DS case and find you some good game recommendations.

  10. I appreciate you sharing your experiences on this. I’m a nursing student. We have been taught to celebrate the positive things with the patient but not to give false hope. They are just going along with their training. I didn’t understand this too much until I was working with a patient who had been through a lot of stuff and survived. She had this huge NG tube to suction fluids from her gut. She hated the thing, and I don’t blame her. It looked uncomfortable, and to visitors they probably had a hard time looking past it into her eyes. The nurse came in and said the doctor wanted her to try swallowing some of her meds and see if she could hold them down. So I helped with that, and she tried so hard not to vomit. Her stomach had been on rest for awhile and she so wanted that tube out. So after she took the pills she felt awful but she did not verbalize it. The next day the nurse said to her, “Maybe if you can drink a little bit and take your pills again we can get this tube out by end of shift!” There was much celebrating. She took her pills again and did better. I was all set to help take the tube out but we were waiting for final doctor orders. I had to leave– and didn’t get to remove her tube, but right before I left the floor the doctor called and said don’t remove it yet. I feel sorry for the nurse who had to and tell her that, and sorrier for the patient who really wanted that thing out and had been living for that moment all day. So I kinda understand where the nurses are coming from. I also understand where you are coming from, when my child was stuck in the hospital for a week and every day I LIVED for the 10 minutes when the doctors came in to see if we could go home the next day. I asked the nurses over and over and they kept saying, we have to wait and ask the doctor.

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