There is a video that I use in training. It is about a woman who suffers a terrible post-operative infection that almost kills her. It reminds us that even as we try and treat and cure people, they can be harmed by our system. What is difficult to believe is that I was looking for this video on YouTube to share it with another patient safety advocate. What I found was the individual I was looking for, but she was now in a different video. This second video, believe it or not, showed her talking about her experience with a second medical error (the above video describes both events). How does this happen? Does she just have bad luck? Maybe people just are magnets for trouble?
Why do I bring up this story? Because my dad died on October 18th. I mentioned previously, that he had been readmitted to the hospital, and that I did not feel it was going well. He got sicker and sicker rather than better, and no small part of that decline was the care (or lack there of) that he received. This is the second time that the heath system has failed him. I wonder if he, like the woman I mentioned above, just have bad luck or is this really how poor our health system is functioning? I fear it is the latter.
I want to tell a bit more about his recent hospital stay….. My dad, at the age of 85 with all his medical problems, had a first time kidney stone. To make the diagnosis, this already sick and dehydrated man, was given a CT scan with contrast. He was sent home from the hospital, with not much interest as to whether he could drink fluids, or a plan for pain management from the very large kidney stone he had. It did not go well. He went back to the Emergency Department and was admitted, now with acute kidney injury and soon to have urosepsis.
Once my dad was in the hospital, I asked that the doctor call me to check in. No calls… My dad’s labs were getting worse and worse and no changes in treatment were made. My mom said his mental status was bad and he wasn’t eating. When the doctor finally called me, it was clear that he thought my dad was demented. He told me they did a swallowing study and he couldn’t swallow which is why he was not allowed to eat. It was not clear what they plan was for his nutrition as he tried to heal from his infection. I also asked what he thought was going on with my dad. He said he was septic. But when I asked him why he was not doing all the things medically that were needed if you say someone is “septic”, his doctor didn’t have much to say. It felt as though they thought my dad was not worth spending time on. I told the physician that my father was not demented, rather he was ill and that his mental status was a delirium. I demanded that they take his care seriously, aggressively treat his infection, and immediately come up with a plan for his nutrition.
He got a little better, and despite not wanting to be my father’s doctor, I demanded a daily call to track the plan for him each day. He made slow progress but then he had an episode of aspiration. His lungs slowly worsened as did his mental status and ability to eat on his own. I asked that he be placed into a stepdown status so I said put him in the ICU. The doctor didn’t think he needed that yet. Needless to say, that evening the nurses said my dad was getting worse so a review by the ICU team was requested. Someone from the ICU team then called me, and it was clear that this person had not been told by my dad’s existing physician that I was a doctor as well, and that I had already asked that my dad be moved to ICU. So the guy from the ICU asked me if we “really” wanted my dad in the ICU….because I guess yet another person thought my dad was just an old demented guy.
Let’s just say that I was not nice to the ICU guy that called me. Frankly, I was outraged. I asked my dad’s primary doctor to elevate the care my father was receiving earlier in the night and he declined. Then when it was clear that he needed exactly what I said he needed it was also clear that the ICU team was ignoring my father’s full code status and seemed to be trying to suggest we should just let him die. No one seemed interested to know who he was before he got sick. He was not demented, he was delirious and needed people to lean and take his illness seriously so that we might get him back home.
He did ok in the ICU for a night and went back to the normal nursing floor. We then asked that a feeding tube be placed to help with nutrition, but until that could be scheduled we asked that he get additional nutrition though a feeding tube. Instead they put in an NG tube – this is a big very stiff and unbelievably painful thing to place in someone. My dad pulled this out, they put it back in. I asked them to place a feeding tube – this is smaller and much less stiff and less uncomfortable. No idea why they would not do as I asked. We got the procedure scheduled to place a G-tube in (feeding tube into the stomach) but then the doctor missed that he was on a blood thinners so the procedure was delayed – this left the NG tube in place. This is so awful and painful but it was the only way to get nutrition into him since he remained confused from his infection and aspiration.
We finally got the G-tube placed and started his feedings. But after only a day his sodium level went dangerously high. For this to happen so quickly implies that the concentration of his tube feeds were incorrect. Back into the ICU he went, the sodium levels were coming down, but this seemed to be the last straw for his mental status and suddenly he could no longer manage breathe well on his own. We put him on the ventilator hoping it would give his injured lungs time to improve, but his mental status just did not improve that much. To come off the ventilator you need either your lungs to be getting better, or a good mental status to cough up the goo. With both of these things not functioning, the writing was on the wall. We waited a week on the ventilator and then took him off. We had hoped he might manage, but he didn’t and we transitioned him to comfort care.
The people in that hospital thought he was old and demented and it is hard not to feel that they made it a self-fulfilling prophesy. I recognize that my father had medical problems and he was physically declining. But his mind was sharp and he had stories he wanted to tell. He was writing a book about his family and childhood to pass to his granddaughter. He wanted to go bird watching and see the fall leaves change their color. He never will again.
I wish that I could say that what happened to my father is rare. Yet, I have had one after another person in the medical field tell me stories about poor care that their family members have received. Circling back to the beginning of this post, the woman in the video would certainly tell you that our health care system is failing us all too often.