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I have often heard health care professionals in various environments say, “If you’re nice to the nurses and doctors who take care of you, you’ll get better care.” As a bedside nurse myself, I understand the sentiment. No busy health care worker loves being met with antagonism or pressing demands that don’t strike us as critically urgent.

But when my husband and I both became patients with serious illnesses last year, we learned the clinical pitfalls of being the nice patients. I am left wondering how patients should be expected or permitted to advocate for their own care without worrying that they will be frowned upon or brushed off because they’re perceived as “difficult.”

First cautionary tale.

In early 2022, I discovered a small lump under my right breast that I initially wrote off as a cyst. Surely, I told myself, as a woman in her mid-40s with no risk factors for breast cancer, this had to be benign. A screening mammogram in May 2022 gave me an all-clear, and I went on my way.

But by November, I knew the lump had grown. I reached out to my PCP to ask for a diagnostic mammogram, and he emailed back a casual reassurance. “I know you’re worried, but I’m confident this is just a benign fibroadenoma. I want you to come in person to see me first before we proceed with more tests.” The next appointment wasn’t open until the end of January 2023.

I felt acutely aware of how I might come across as the paranoid or hypochondriacal woman, or as the cocky nurse trying to play my card of “Hey, I’m a health care professional too.” I hesitated for a day, but my now-nightly self-exam told me once again that this lump had most definitely grown, and this was not normal. So I pushed back.

“Dear PCP,” I wrote, “we both know that even after the in-person exam, what we’ll need is the diagnostic mammogram and probably an ultrasound and biopsy to know anything for sure, so could you please just order them?” My PCP acquiesced without further resistance. Sure enough, it turned out to be invasive ductal carcinoma, and so I started on my journey through my lumpectomy, radiation, and hormone therapy.

‘Time is function’: my husband’s story.

Just after I started hormone therapy, my husband Steve had an outpatient procedure for some speaking and swallowing issues. In the two weeks after the procedure, his postoperative course morphed from the expected pain in his throat to neurological decline that was ultimately attributed to an epidural abscess that had developed and was severely compressing his spinal cord. He was rushed to emergent surgery and then spent a month in a rehab facility. He has recovered enough to eventually return to work, but now has some significant deficits.

During the period when he was still getting worked up for his unexplained neurological decline, the initial two MRIs of his spine did not capture the abscess that was slowly growing and would blow up in just a couple days, bringing him precariously close to complete paralysis or death. Doctors scratched their heads at the apparently ‘clear’ MRIs and increased his pain medications.

When he became unsteady on his feet, he went to the ED, an environment where triage is the main driver for clinical attention and decision-making. For the 32 hours he spent in the ED, my husband’s vital signs were stable. As the perpetual ‘nice guy,’ he remained calm and quiet, without complaint despite excruciating pain with movement, and didn’t emphasize the extent to which he could feel himself losing function in his extremities.

“It’s hard for me to hold my cell phone up, even with both hands,” he told me.“I tried to reach for something in the room and I fell onto the floor of the ED, and it took them about 20 minutes to realize I had fallen.”

I was too overwhelmed, trying to sort out logistical needs with our kids, trying to make sense of a rapidly changing situation (after just barely stabilizing out of my own health crisis), to think clearly about his clinical situation. Fortunately, a physician friend checked in with my husband by text message and grew alarmed when he heard how quickly Steve was declining. This friend advocated on our behalf for a neurosurgeon to weigh in more quickly than we would have asked for, prompting a neurosurgery consult, which prompted another stat MRI, which finally identified the abscess that was now visible on the scan. At 2 am, my husband was transported to a bigger hospital where he underwent decompressive surgery at 6 am.

‘Time is function’ in these cases. We understand now that if we had waited even one more day, my husband would likely have become permanently paralyzed, or would have died.

Putting ourselves in patients’ places.

I am struck by how much we wanted to be the ‘nice’ patients. As a nurse myself, I was sensitive to how pressed for time all these health care professionals surely were. I wanted them to know that I understood their stressors and respected all their work. I was also terrified and felt very much that my husband and I needed prompt attention in our respective situations, sooner rather than later. And I was shocked at how tricky it was to navigate these nuances.

I recognize the systemic issues at play that make it difficult for health care workers to give in-depth attention to every anxious patient and family member. I still don’t have a desire to become an overly ‘squeaky wheel’ in future appointments for myself or my husband. But I do need to ask the question, are we as nurses aware of the pitfalls for the ‘nice’ patients and families who don’t speak up for themselves when they have concerns? Are we willing, and astute enough, to keep them on our radar when important questions remain unanswered about their clinical condition?

(For more posts by pediatric ICU nurse Hui-wen Sato, click here.)