The “difficult” patient

A number of years ago, over a 3 day stretch in our small ICU, I had the opportunity to care for Jake (not his real name). Jake had lived with chronic right-sided heart failure for 17 years, and he was only 47. He was visiting in our province from a large city in the eastern US, and only stopped in our town because he had developed a minor respiratory tract infection and then taken a turn for the worse, and had developed severe difficulties with his breathing. By the time he and I met, he had been in our ICU for 24 hours being monitored; efforts were being taken to stabilize his condition so he could return home. I took report in the morning, and the night nurse told me “good luck—I have never worked with a more difficult patient”. Now remember, in ICU we are much more familiar with caring for patients that don’t “talk back”, they are usually either unconscious, or so ill that they simply let the care team “take over”. So, we do.  Jake was very short of breath, and had bouts of severe chest pain, but he was conscious, cognitively sharp, and in another nurse’s words, “non-compliant and demanding”. From our first meeting, I made it clear to Jake that I knew, that HE knew much more about his condition than I did, and that I felt it was my role to learn from him, and work with him to get him back on track. We were to be partners in getting him through this ‘blip’ in his health trajectory. At first, he was suspicious. When I walked in that first morning, I explained the few things in the institutional routine that were somewhat fixed for that day (the time of his lung scan for example), but that the rest of the day could pretty much be shaped in the way that he found most comfortable. I asked his permission to conduct a head to toe assessment, and when listening to his chest, I told him what I was hearing, and he explained how he had learned to auscultate his own chest to monitor his lung bases for fluid. So, I put my ear pieces in his ear, and asked his opinion. I remember him looking at me through slitted eyes, as if he were thinking “OK lady, is this an act, or are you for real?” Another bone of contention had been around the dosing of his oral antidiuretic. He was on huge doses of furosemide to control his symptoms of fluid overload. He required 9 doses per day. As per institutional routine, our pharmacy system spit out particular times he was to take this drug—and those times did not work for him. One approach taken by others had been to argue with him, insist he take his medication when ordered, and stand there in a medication administration “show down”. That wasn’t working, and just felt wrong. So, I took a different approach. This man had been taking this drug for 8 years—who do you suppose knew best about how to take it? So, I asked him; what would work for him? That was how we proceeded for the next two 12 hour day shifts. Jake was improving rapidly. Near the end of our second day together, when I walked into the room a woman was visiting. She looked at me and asked if I was Shannon.  At my response, she walked over with arms opened wide, her eyes moist. She hugged me, and I know I looked a little mystified by this emotional welcome. She told me that for the first time, in 17 years of frequent encounters with the health care system in both the US and Canada, Jake felt listened to, and felt like a partner in his care. I was stunned. It was so simple. I simply respected his lived knowledge, and authentically committed to working with him. The great irony is that I probably expended far less energy than those who had engaged in well-intentioned arguments to try and get him to “comply”, and I also learned things about right heart failure that I will never forget! Ultimately, I also believe it was a big part of the reason that he improved so quickly—he was also expending less energy because he didn’t feel as though he had to fight for what he needed. It was an experience that would forever change my practice. It was a defining moment for me.

Do you have a reflection, a story or an observation that has helped shape your practice and who you are as a nurse?  I hope you will consider sharing it here.