Earlier this week, a panel of colleagues at my hospital participated in an Ethics Grand Rounds where they discussed the topic, “When Parents Question Our Expertise: Trust Alliance, and Boundaries in Pediatric Care.” As you can imagine, the conversation was full of stories about tensions with patients’ family members, personal/shared struggles when we feel fractures in these relationships, and also empathy for these precious patients and families.

The conversation stirred a lot of thoughts for me, but one that curiously stood out was the ways in which misperception and misunderstanding can play a deep role in the tensions that arise between healthcare workers and patients’ family members.

More specifically, I thought about my experience as a newly diagnosed breast cancer patient in January 2023. I remembered how I frantically scribbled on a notepad as my surgeon’s office described surgical plans to me, as my primary oncologist described the broad array of options with radiation, potential chemotherapy and hormone therapy, and my radiation oncologist described the specific process and timeline of radiation. I remembered struggling to understand my oncologist’s accent, particularly when he was telling me medication names for me to research as I made decisions about what I wanted to go into my body. I remembered my thoughts wandering to childcare logistics as my radiation oncologist told me about the daily radiation schedule for four weeks and the profound tiredness I would likely experience during that time…before I quickly snapped back to what the doctor was saying and realized I had missed the last two or three sentences.

Even as a nurse myself, cancer was never a speciality of mine, so all of these medications and treatment plans were new to me. But more than once, the staff would start explaining things to me and then cut themselves short with, “Oh but you’re a nurse! You already know all this.” I was overwhelmed as a mother and wife and human being, overwhelmed by the ways our family routines had been upended, and overwhelmed by the ways I as the sick wife and mom still needed to show up to my family nonetheless. I was flailing with my own emotional and spiritual attempts at processing and coping with what was happening to me. Everything was chaos and everything in me was on overload. The doctors were speaking about a life and medications and disease that I could not yet comprehend. But I could tell they assumed I was taking in and understanding all the information in real time, just because they had said the words.

Six months later, when my husband suffered his epidural abscess and subsequent severe spinal cord injury, requiring major surgery and over a month of an intense rehab stay, I remember reading his chart where physicians noted, “No family at bedside.” I knew it was just a notation about their [lack of] interaction with family, but this felt personal. I was driving almost an hour one-way across town to visit him on my days off of work, after finding friends to leave my kids with (since the rehab floor didn’t allow kids to visit), then an hour back home to try and tend to kids and meals and pets and the house.

And yet I think about the ways in which we healthcare workers often say things like,

“People have explained things multiple times to that patient’s mom, and she just doesn’t seem to get it. We’ve already told her about this!”

“Dad keeps asking the same questions!”

“I don’t understand why Mom isn’t at the bedside more often.”

Sometimes, without realizing it, healthcare workers really are from Mars, and patients and family members are from Venus. The medical / hospital world is an intense vacuum all its own, a world not easily mastered, linguistically, mentally, emotionally, financially or logistically. But it’s ridiculously fast paced, and healthcare workers, I think, sometimes expect our patients’ family members to keep up with the pace of it all because it is so difficult for us healthcare folks to let them slow us down.

The world for patients and families is one of such overwhelmedness in acute cases like mine and my husband’s – even when I had a healthcare background. I couldn’t imagine the experience for non-healthcare families, not to mention those for whom English is not a first language. Trying to exert mental energy to learn the language of illness and healthcare and treatment plans as a patient or family member, is like trying to study for a test you know you can’t fail, but you’ve been without sleep for weeks and your house is on fire.

Healthcare workers can so easily assume patients and families understand things after just one or two explanations topped with a nice handout. When families ask questions repeatedly, or cite things they’ve read online, I would like to suggest this comes less out of a desire to accusingly question the healthcare worker (though sometimes that fundamental distrust is real). It’s may also be because they are simply 1) cognitively and emotionally overwhelmed; and 2) perceiving how rushed the staff feel with their questions, feeling pressure to keep up with all the information and decisions, and turning to whatever else they can in order to keep up (i.e. Google or ChatGPT) as they are learning an entire new language and world.

There’s a lot about my and my husband’s illness journeys that I would love to forget. But what I hope to always remember in my own nursing practice, is the vulnerability and overwhelmedness I felt, and the intense reliance I had on the kindness of healthcare workers to be patient with me as I struggled to keep up with all the curveballs life had thrown our way.