I saw this video on the intranet today. It made me really sad, that some caregivers have the perception that wanting to improve healthcare by involving the voice of our patients (CAHPS) is silly or stupid. That as long as we don’t kill people, we have done our job.
I realize the video is supposed to be funny, and I’ve spoken with enough caregivers to know that many resonate with its message.
The thing is I’ve also spoken with enough patients and family members who have gone through a significant amount of unnecessary suffering that had nothing to do with their medical condition and everything to do with the way they felt treated by their care team, to not find much humor in it at all.
Even yesterday, I spoke with a mom who told me about her experience with her twenty-eight year old daughter who has Hodgkin lymphoma. This is her third round of chemo. Her daughter is also a wife and a mom; her own daughters are four and six years old.
Last week her daughter started to experience unbearable pain in her stomach. Her mom took her to the ER so that her husband could stay at home with the girls.
When they got to the ER, she said they waited for over eight hours with very little interaction from any caregivers whatsoever. They felt ignored, but worse they felt judged: as if the staff, including the physician, assumed she wanted drugs for pain to get high.
My daughter felt like they striped her of any dignity she had left. When the people you have gone to for help ignore you and pass judgement on you, it causes a lot of pain.
I can only imagine what it must be like to have cancer ravaging my body, but then, on top of that, to feel like the very people I’ve gone to for help have turned their noses up at me, or worse, have acted like my feelings, my situation, my life, doesn’t matter–all that I would have left would be rage.
And so it was with this young woman.
Feeling like no one was listening and wanting to get away from being in a place surrounded by people who she felt were judging her, they left AMA. She saw her oncologist the next day and and he immediately told her she needed to go back to the hospital to be admitted.
This is what patient experience is all about. It’s not about getting a patient a cup of coffee if he or she asks for one, or patients and their families being prima donnas. It’s about people who need help and our ability as caregivers to meet that need with compassion, respect, and love. Sometimes that involves a cup of coffee (or a turkey sandwich) but it’s so much deeper and more significant than that. If we think patient experience is simply making our hospitals look like hotels and nurses becoming waitresses, we have missed the point entirely.
What do you think? I’d love to hear your thoughts!