From Advocate to Caregiver: My Reckoning with Plain Language

By: Mary Jane Nirdlinger, AICP, ICMA-CM

Last July, my son texted me at 3AM: the CT scan shows a mass in my head.

I cried. I booked a ticket and signed off at work. I packed a carry-on and flew to Toronto where I would stay for the next three and a half months.

Before I got on my plane, he and his girlfriend met with the head of Neurology. Clicking on the video she took while the surgeon talked was like opening the door to our new reality.  The doctor’s finger jabs at the computer monitor, and I get my first glimpse of his enlarged ventricles, a dark butterfly hovering over an avocado-sized tumor in the center of his head. The doctor’s disembodied voice explains how hydrocephalus caused his vision and balance problems; the dark pockets of fluid have pressed his brain against his skull, like a sponge. I scramble to take notes so I can tell all our people what’s going on.

Looking back, it’s amazing what my son’s brain managed for years with silently increasing pressure: university, working, friends, passing a financial certification exam, and starting a graduate degree–all abruptly halted.

Communicating in Crisis

We were scared and we were overwhelmed with questions and decisions. There was no two-sided, laminated chart with illustrations to guide us through this situation. Where to have the surgery? “I’m staying here,” was his definitive response. Location selected, we faced more decisions: When to operate? That depends on a lot of things: How bad are the symptoms? Has anything changed since yesterday? Last month? Last year? We were off the map, navigating a complex world of surgeries, I.C.U.s, MRIs, rehab, and complications. Every decision led to more questions, endlessly branching decisions with uncertain outcomes.

As a plain language professional, I know that no amount of usability testing or focus group discussion can replicate the reality of the patient or advocate experience.

An experience like this is humbling. There’s no why; it just happens. I said, “I almost wish you’d fallen as a kid and needed an MRI so we would have found it earlier.”  His response was, “I’m not sure I could have handled it as well then.”

There’s a hope at each step that you’ll be the lucky one. They’ll get all of the tumor out. You’ll walk out in three weeks, as good as new. You won’t need a permanent VP Shunt. You’ll recover quickly because you’re young. I felt like we were living in a movie, hoping for a storyline where a great tragedy presents itself and everyone pulls together and it all turns out okay. This far on the other side, I do feel incredibly lucky, but throughout our experience, fear lurked like the colder water in a lake, freezing your toes every time you let your legs drift down.

We knew this would be hard and we braced for it, but we had to navigate bureaucracy, paperwork, and our own emotions.

Communication Happens in Context

As the patient or advocate, you try to stay afloat while you’re forced to navigate your way through systems, bureaucracy, and paperwork, and hold up those around you.

As plain language professionals, we know to put ourselves in the shoes of the reader. We do usability testing, we workshop, we get professional and layperson input. But what we can’t test is the state of mind of someone in crisis. Chances are your “reader” is not receiving your communication in isolation; they are trying not to drown in a flood of tasks and information.

During long hours in waiting rooms, I listened to families trying to understand what was happening with their loved ones, sorting out insurance details, and updating others. They were coping with the moment while planning for next steps.

Our bandwidth to struggle through unclear information or to navigate cumbersome websites is minimal at best.

Searching For Understanding: We Will Google.

Our conversations with the doctors were our first form of education, along with the MRIs. I took notes, but as soon as the conversation was over, we went down the online rabbit-hole.

Search, research, plug it into AI: what does this mean? How is it treated? What are the outcomes?

We’re all searching for answers online, trying to sift the helpful bits from the rest. Although I grew up with two parents who were doctors, I relied on online tools to simplify the situation for my son and family. The internet is littered with alarming information, tangential cases, and statistics that don’t enlighten. Even so, it could turn hospital jargon into language I could digest.

This was especially true for patient discharge notes which don’t seem to be written for the patient. Although the hospital always had someone come in to explain the notes before discharge and I’d scribble down everything I could. In those moments, I was mostly focused on “What to do next?” Back at my laptop, I used AI to “translate” the copious notes section by section, so I could understand and explain to my son and other family members the specifics of what he was experiencing. This was helpful, but I still wanted to talk to a human being who was trained to answer my questions.

The Personal is Paramount

One of the Neuro Fellows exemplified good care: he would re-explain what the surgeon said, using multiple angles, and then asked us to say it back. He was never dismissive of our questions, but took the time to answer them. Although the surgeon was clear, the time the Fellow spent to make sure that we understood and that we had a chance to ask follow-up questions was critical to feeling confident in our decisions.

One of the clinic nurses would stay after the doctors left and do the same. “What did you hear?” What other questions do you have?”

Repetition is essential to being able to absorb the full situation.

Bureaucracy is Omnipresent

If we were on a raft lost at sea, bureaucracy was the weather, always present, and often unpleasant.

The challenges began the moment my son stepped into the hospital. We’d been told the first hospital stay and tests would be covered, but during the transition between student and provincial insurance, a sizable invoice appeared in his online medical account.

Messages, chat-bots, and voicemails were useless. After a week of trying to chase down a clarification, a woman in the financial office answered his email with her phone number, took my call while he was in the ICU, and explained that the enormous charge on his account had to do with the timing of invoices vs. insurance commitments. “It’ll be gone next week once we can enter the reimbursements.”

I cried with relief. In five minutes of conversation, she accomplished what hours of pressing buttons, leaving messages, and sending emails back-and-forth couldn’t. Then she said, “Tell your son we’ll be thinking about him.” She answered my question and made me feel like an actual human being cared about what was happening to us.

Humanity is Priceless

Everyone wants efficient systems, so bots and voicemail-trees proliferate, but I would argue that they are eroding our systems. Even writing this, I can feel my body constrict. The frustration of chasing menus and getting cut off, of being caught in a circular “conversation” with a bot, and being bumped back to the starting menu take a toll. I’m angry before I even get halfway down the labyrinth of choices, trying to find a human being.

I get it. I work in a bureaucracy, and we tell ourselves that it would be more efficient if we could use systems to direct people to the right person. What we’ve done over the years though, is we’ve eliminated the right person, the one who picks up the phone and helps you with an answer. With AI bots proliferating, and companies springing up all around us that promise to replace the human and make our systems more efficient, we may be forgetting what really matters.

All I wanted was to talk to a person. Even if they had to take my number, go find an answer, and call me back. I heard echoes of this in every waiting room. Frustration, tears, “can I please talk to someone?” The emotional toll of not being able to get questions answered is high, especially when people’s emotional reserves are low.

When we mistake machine efficiency for effectiveness, we lose our humanity.

An Effective System: The People-First Approach

Our best experiences involved people. As an American, I’m used to a health care system that is fundamentally geared towards profit. As I talked to friends and family in Canada, they were quick to point out that the Canadian health system has its own flaws, but as an outsider looking in, I saw a lot of strong positives. In both countries, there are thousands of people in the health literacy world working hard to make this system better for patients, to maximize care, and to improve communications. It’s essential work.

When my son left the hospital for rehab, we entered a new place and a new phase. Neuro-rehabilitation is its own specialty, and I was struck by a couple of things. His team of physicians, nurses, occupational therapists, physical therapists, speech therapists, and social workers shared notes, but they also spent time talking to each other every day. The core team was consistent, meaning the same people saw him daily, and they had clear roles. The social worker was our coordinator; whether we had a question about coverage, medications, or schedule, she was there to help us navigate. When we had patient-care updates, they all sat in a room with us and my son, answered questions, and helped us navigate and plan for his recovery. This accomplished in hours what would have taken days of electronic communications, and streamlined decision-making.

Adaptability is necessary

A paper binder captured his instructions, exercises, and the endless forms and documents we needed to track. The materials were designed to be functional for him and his limitations. Font size increased when his eyesight wasn’t good, a bright stripe of color added on the left because left-neglect meant his brain wasn’t “seeing” anything on his left side. All his exercises were illustrated. The team’s ability to adapt the materials was key to making them useful.

Great Form, in Theory

Back in the United States, I had to submit paper claims for prescriptions purchased in Canada. With multiple, weekly prescriptions—so many papers—I had to print out forms, make copies, and mail them in. Weeks after sending a batch off, they sent back an easy-to-understand form asking for additional information for my claim.

Which one?

Nowhere did the form indicate a date, refer to a particular claim, or provide a contact to help me. Great form in theory, but not in reality.

How many times do people just throw their hands up in defeat and pay out of pocket when they shouldn't have to?

What I Learned

We can write good content, but plain language without compassion is incomplete. At its best, effective healthcare communication is clear, it is delivered by people who are aware of the patient’s context, and it is part of a system that acknowledges real world emotions and circumstances. Based on our experience, an ideal system would:

• Have real people help your patients: Having a go-to person such as a nurse, office worker, or social worker helps patients and their families feel supported and get quality information.

• Provide written summaries: After discussions, provide written summaries of what was discussed, including key points and next steps.

• Use plain language: Explain medical jargon in simple, everyday language.

• Encourage questions: Foster an environment where patients and families feel comfortable asking questions.

• Use active listening: Ask patients to explain what they’ve heard. Listen for areas that need clarification.

• Use visuals: Use visual aids to explain complex concepts or procedures.

• Personalize content: Consider the emotional and cognitive state of the patient and family and personalize as appropriate.

• Be real. Use empathy and compassion. Ask a question, share a story, smile. A few kind words go a long way.
  
  
  

About the Author:

Mary Jane Nirdlinger, AICP, ICMA-CM, is a dedicated public servant and Deputy Town Manager for the Town of Chapel Hill, North Carolina, where she has worked for the past 16 years. Born and raised in the Midwest, she earned her Bachelor of International Relations from American University in Washington, D.C. and later pursued graduate studies in Urban Planning at the University of Michigan, where she received her Master of Urban and Regional Planning. Her academic journey also includes a Master of Fine Arts from Vermont College of Fine Arts.

Mary Jane's professional experience spans local government, the U.S. Coast Guard, the private sector, and academia at UNC-Chapel Hill. She has been instrumental in creating the Plain Language Center of Excellence for Chapel Hill and has led community-wide planning initiatives that emphasized public interaction and communication. She serves on the Board of Directors for the Center for Plain Language.

In her personal life, Mary Jane is the proud mother of two young adults. She enjoys reading, writing, yoga, and fostering the growth and success of those around her.