Experiences of Care: Trust and Patient, Family Suffering

Added on Jun 8, 2016

Deirdre Mylod, PhD, Executive Director, Institute for Innovation; S​enior Vice President Research and Analytics, Press Ganey

My mom was in the hospital a few years ago to have abdominal surgery to remove a tumor. She had a number of health issues (heart disease, diabetes) and past health experiences (two bypass surgeries, grafts, aortic valve replacement) and between that and my profession, we felt pretty experienced in evaluating inpatient care experiences.
For this surgical admit, everything was done precisely as it should have been; hourly rounding occurred like clock-work, she was brought warm blankets for comfort, nurses gave bedside shift report and managed each other up and on Friday came to give mom a hug goodbye because they wouldn’t’ be working over the weekend. Her physician had set very realistic expectations about pain control noting that she could be in a fair amount of discomfort, though for the first several days she had no pain because she still had an epidural. Everything was going swimmingly.

The nurse explained that mom had become combative during the night and pulled out her IV. She was a fall risk so they had to move her to a bed with an alarm. The nurse asked me if mom was ever confused at home. I explained that not only was she not confused typically, she had a PhD and did the Times Sunday crossword puzzles in ink. The nurse didn’t seem to know how to respond, so I assumed they were considering the possibility of a stroke.

Mom continued to say she felt awful and to ask for a pill. The nurse said they’d had trouble getting her pain under control through the night and had given her as much as they could, listing off the names of the drugs they had tried. Soon after, mom seemed nauseas. But she insisted that she did not need to throw up…even while nearly doing so. Finally I asked her if she felt awful because she was in so much pain or if she just felt gross and she confirmed, with a bit of a slur, that she just felt gross.

I spoke with the nurse and shared that I believed mom was overmedicated. I told her after prior surgeries, she’d had Vicodin which managed her pain well but did not make her feel sick. I asked if we could try that instead of whatever she was on. She explained that we could, but would need to wait until the effects of the current pain meds had worn off.

Over the next couple of hours, mom thankfully returned to herself. But as her head cleared she began to experience the pain. The nurse came in with the Vicodin and placed the cup on mom’s tray while helping to transfer mom from chair to bed. As she turned around she knocked the pill off the tray onto the floor, picked it up, put it back in the cup, turned back to my mom and handed her the pill. I was just a few feet away and said: “We’re going to get a new one right, because that was just on the floor?” She froze, seemed panicked and said “Right!” and ran out of the room.

Now we waited. I saw our nurse pacing up and down the hallways on her cell phone, but couldn’t figure out why it was taking so long to just get a new pill.

Finally our nurse came in with the pain medication and when she handed the cup to my mother, I noticed that the pill was broken in half. I didn’t think anything of it until the nurse said quickly- “It broke when I took it out of the package.” I wasn’t sure to believe her, but my mom was in pain so I said ok. What went through my mind is: “I don’t trust you. I saw what you were willing to do in front of me, how can I trust what you would do behind my back?”

It occurred to me that the many practices we encourage as part of service excellence are meaningless unless they are in service to something else - actual quality, reduction of anxiety and building of trust.

View more from the Press Ganey Experiences of Care, video series.