too busy advocating to write about advocating…
Wow, it’s been a while since I have had the head space to sit and write about this. Being a nurse who has been out of institutional settings since the early nineties, I am realizing that things have changed dramatically since then. My idealism led me to ‘drop the reigns’ a bit, expecting the standard of care to be what I am familiar with…to my chagrin, I am realizing that even in the most quality institutions there is something missing…and that something seems to be what might be called a ‘care coordinator’.
V. ended up admitted to the hospital due to low bloodcounts, and they gave her blood through her newly implanted ‘port’, a handy device that gives access to the main blood vessels, eliminating the need to stick needles into her hard to find veins for blood drawing or IV infusions. The port had been placed two days prior to her unplanned hospital admission, and the surgeon told us not to mess with it at all for seven days. The surgeon set it up with what is called an ‘access’ that was left in place so I could give her IV fluids at home to combat the lingering dehydration that had been such a challenge. I had to go back to the Cape to take care of things, and my friend K. was visiting her while they were waiting for me to come back and bring her home. When I called to check in, K. told me that there had been some confusion about the port but it was taken care of. When I asked what, she told me that the nurse came in to deaccess the port before discharge, which is their protocol. K. said that V. tried to tell the nurse that she was told the port shouldn’t be touched for seven days…the nurse said she had to deaccess it, the doctor ordered it…
As you might imagine, I went a little banannas. I called the nurse’s station and spoke to V.’s nurse, remaining calm enough to explain that the port was brand new and the access was there because we give her fluids at home three times a week. When she realized the implications of what I was saying, she got really upset and said she would take care of it. By the time I got there, the risk management director was there, the port had been reaccessed and things had gotten taken care of…I, of course, was still incredulous on two levels…level one was that V. hadn’t been listened to, and as a result ended up in unnessary pain and the precious port had been jeapardized…level two is from a nursing perspective…the port was dressed like a fresh post operative site…the patient said so and also said the nurse shouldn’t deaccess it…why were doctors orders so rotely followed? Why wasn’t the order questioned? Why didn’t the doctor know? Why doesn’t the right hand know what the left hand is doing?
My question to the risk management coordinator was “Am I the only one holding all the pieces of information about V.’s care? Who’s accountable?” Her answer was to validate my upset and encourage me to continue to hold the pieces and speak up for V. at the risk of being labeled a ‘pain in the butt’ because I was right, noone is holding the pieces…just me…it made me realize on a more profound level how important it is for a patient to have an advocate.
I think what shocked me the most was the acceptance of this mode of care, or maybe the apathy about it. It feels to me like all of the fragmentation and specialization of care has undermined the most important reason anyone should go into medical work…treating the whole patient…restoring health. How is it acceptable for mistakes that jeapardize the patient’s wellbeing to be taken so lightly? I worked in hospitals for twenty years, and it seems so unbelievable to me that this kind of what I would consider negligence is not only tolerated, but apparently allowed! I’m a nurse and having a full time job advocating…I can’t imagine how non-medical people handle it…