A couple of months ago, I received a call from the hospital: “You visited us a couple of weeks ago and wrote some remarks on the evaluation form. I am in doubt whether we should see this as an individual complaint or should classify this as suggestions for improvement.” This ended up being a long conversation about n = 1 and “generalizability” to label it statistically…
The ‘incident’ or ‘event’ she was referring to, my daughter and I visited the emergency center. A disturbed pain awareness (or pain stimuli and the process thereof), pain association, and the mere experience of pain brought us there. At the intake, we mentioned the ‘disability’ of our daughter, difficulties with communication precisely. A history of severe pneumonia caused our home doctor to direct us to the hospital. The questions by the emergency doctor at the time were: “Are you in pain? How high do you rate your pain? Is it in your stomach?…”
When she had pneumonia, the same questions were posed, and they almost scheduled her for appendicitis surgery. The doctors were confident that this was the issue since she said yes when they asked her whether she had pain when pushing on her tummy (apologies for oversimplification, it was, of course, much more complicated than this). When the ultrasound did not prove this case, we were sent home with a daughter with febrile seizures or convulsions that could not be traced down to physical or medical issues. We saw three different doctors the following days, and one said that her lungs sounded strange. Since this is hard to hear, we were sent back to the hospital, again checked, and while the scans came through, I noticed that the doctor became pale. He looked at my daughter and asked, “how do you feel?!”. She responded to be fine and fainted afterward.
The alarming image of the lungs appeared to be associated with an individual who would be sick to death, according to the doctor. He could not believe she still stayed ‘strong’ and that she answered questions.
That day in 2021, we noticed the same symptoms, and I asked the emergency doctor to check her lungs. She responded: “I am talking to your daughter; I often notice that parents are too overprotective, so I care more about the patient itself.” I know my daughter very well and tried to signal her difficulties with pain interpretation, body awareness, and communication. But there was no attention given to that. This is what I signaled to the “customer satisfaction” contact that I talked to. No response was given to my signals as a mother or caregiver; my daughter is not able to respond to this type of (suggestive) question. She will respond to questions or inquiries in a socially desirable way and scans the faces of others to see ‘what she should answer.’ I suggested a drawing of a body so that people can indicate where it hurts or feels strange. I also asked them to pose open questions and listen to the parents’ input. They said all was good advice and that they would do something about it. I stressed my main message: “although I noticed this only with my daughter, it ís also essential for other people; I strongly believe in these improvements, for example, with the use of visualizations, many people are better able to communicate.”
Last December, we were back again at the emergency center, so a couple of months after the encounter with ‘customer satisfaction’. My daughter experienced great pain and was no longer able to walk. Her regular doctor had already put her disabilities and signal pain awareness issues in her personal file/record, so I was comfortable or expected to receive appropriate care. However, one of the first questions was: “Can you jump?” … my daughter responded, “yes, of course,” looked at me and said to me – when the doctor left: “what a strange question, I am able to jump from when I was 2, I guess.” Hmm yeah, she can jump, but not at the moment, and that was not tested nor asked. “She is totally fine, mommy; you should not be so worried.”…
That evening, my husband went to the emergency center with her because the pain was extremely high, while she usually does not report experiencing pain… When my husband went, he just appointed them to perform an ultrasound. And they noticed an issue with the appendix indeed.
This raises many issues, not only about gender, maybe also about impression management, issues about communication, and the scanning and analysis of a patient and looking for the issue. To me, it especially makes me think of the n = 1 issue. And in so many ways, also encompassing gender and other diversity issues. We should be aware of all types of diversity, and this means giving more attention to the level where n =1. We can learn a lot from it, not only how to treat this one person, but probably also how to treat and interact with others. The awareness of the differences between mothers, fathers, different children, but just any individual enables us to see that we are all different and that these fine-grained differences should be treated equally.