An Update as of 10/2/12

Yesterday, Bob “graduated” out of ICU to the regular floor. While on one level, this was a happy event because it meant that his life was not in such immediate danger, the reality of the transition was a lot less happy. The move was short in distance -- just from one unit to another that is practically right across the hall-- but the differences in organizational culture were dramatic. When we left the ICU, we left a high functioning organization clearly dedicated to patient care. Tasks were clearly structured and organized, the staff cooperated and communicated effectively, and seamlessly stepped in to assist one another or to cover for one another when things got busy. The tone was of professionalism, cooperation and caring.

My experience on our first day in the regular unit was much different. The organizational culture on this side of the hall seems to be of poor communication, conflict, and stress, and there does not seem to be the same clear focus on providing high quality patient care. We arrived on the unit about 1:45, escorted by the ICU nurses who bade us a fond farewell, however,  we were not welcomed by any person on the new unit or told who would be providing Bob’s care. At a little after 3:00, I went looking for a nurse because I wanted to leave for a few minutes to walk Grandpa to a lecture he was attending and I was concerned that with his memory problems, Bob might lay his bed down flat (He just had) or try to get up. I also really wanted to make sure that someone even knew he was there. It turned out it was shift change time, so the outgoing nurse had to be brought out of a meeting. She opened a panel at the end of the bed, pushed a button, and left with hardly a word.

The next time I saw a nurse was after 4:30. She was very nice, but seemed to know almost nothing about Bob’s situation or needs. The two-minute interruption occasioned by my request was the excuse she gave for her not having been properly briefed. She provided him with mouth care, but nothing else. In the meantime, a rash on his legs went unattended and grew to twice its size over the course of the day.

At 5:30, the nurse came back to check on what kind of dinner tray Bob wanted. She seemed surprised when she noticed the trach and asked if he was supposed be getting tube feedings. When I confirmed that he was, she went and got him restarted in feeding after a nearly four hour delay. When I told her that I would like to get some sense of what the goals were for this phase of Bob’s recovery, she looked bewildered by my question and said I would have to talk to the doctor when they did rounds at some non-specific time in the morning. I didn’t see that nurse again.

I knew there was another shift change at 7:30, so I wanted to stay until Bob got settled in with the night nurse. We waited and waited and at 9:30 I finally called for the nurse. She came in harried and rushed and said that she had been busy with other patients and that she’d done nothing but put out fires since she’d arrived. I asked if she would at least turn Bob. He was supposed be getting turned every two hours and he had not been turned since he arrived (except for the moving around I’d been able to get him to do). She, too, seemed to know almost nothing about Bob and his care. She was not sure if he had a pacemaker or not. She also asked me if he was supposed to get water with his tube feedings.  I said that I thought he was but I wasn’t sure. She said she had no orders for Bob’s tube feedings, and that the last nurse had just started on the basis of information from the ICU nurses. She also mentioned that the computer system was down so she could not get access to information about Bob’s care.

Things were not much better with the nurse’s assistant. Bob made a joke when she said she was there to check his vital signs. He said “Oh, I have a lot of vitality, so you should find plenty!”, but she didn’t even smile.

I made Bob as comfortable as I could and I left about 10 because I was tired and very hungry. He must have seen my concern because his parting words were “don’t worry about me.” The nurse suggested that I could call back to check on him. So at 11:00 I called but was put on hold until 11:20. When the nurse came on the line, she explained that she had been kept very busy with Bob’s roommate and that this man was being moved out (I had heard him starting to become very belligerent before I left, which was also upsetting.). She told me she was just about to get ready to go give Bob his medications that had been due at 9:00pm.

I have tossed and turned all night and it has been hard to sleep. I can see that I am going to have to become even more active and assertive in providing for Bob’s care. There does not to be nearly the same concern on this unit about keeping the triple enemies of infection, clots, and bed sores at bay. I have several friends and family members coming to visit in the next few days, and I will be very glad to have them here.

The transition doctor I met with in the morning to plan for Bob’s eventual move to a rehab facility also mentioned, almost as an aside, that Bob may still have a trach and tube feed when he goes home, which also has me a little freaked out (“Oh, nothing to it”, says she). But I can’t even think that far down the road.

I can see that the next phases of Bob’s healing process are going to require a very different kind of energy from me. Hopefully, we will have a better day on the new unit. My concern is that the problems we had are not the fault of any of the harried or stressed out nurses we encountered, but are more systemic and therefore will be much more difficult to solve.