What Satisfaction Surveys Will Never Tell You

Two decades later, I still hate checking the mail.

When my son was sick, I developed an actual physical response to walking to the mailbox. My chest would tighten as I put the key in the lock. My stomach would clench as I opened it.

Because I knew what was waiting.

Bills I didn't have the money to pay. Explanations of benefits that were often wrong — and the exhausting, demoralizing battle of getting them corrected. Collection notices for balances I was already disputing. Appointment reminders. it

Every envelope was a reminder that the system saw me as an account number, a data point, a case to be closed.

I call it mailbox trauma.

Our intensive medical journey ended twenty-one years ago. My son is alive and well — thriving, as a matter of fact.

My body still braces every time I walk to the mailbox.

I used to think that it was just me. Turns out It's not.

The lifetime prevalence of PTSD among parents of children with serious or life-threatening illness ranges from 27% to 54% — compared to just 1% to 7% in the general population. Parents and siblings report more symptoms than the patients themselves. And 30-45% of parents continue to experience symptoms years after treatment has ended - regardless of the outcome.

The trauma doesn't end when treatment ends. It takes up residence. It lives in the body. It echoes for decades.

And here's what the research also shows: the distress parents carry isn't only about the past. It's also about current stressors — the ongoing demands, the system failures, the bills that keep coming.

It can take years for the volume of mail to go back to a normal amount. For months — sometimes years — the mailbox is full every single day. Bills from providers you've never heard of. EOBs that don't match what you were told. Collection notices for balances you thought were paid. Duplicate statements. Threatening letters. And surveys — always more surveys — asking how they did.

The mailbox isn't a reminder of old trauma. It's a source of new trauma, delivered daily.

But you won't find that on any dashboard.

Healthcare systems measure everything.

Wait times. Readmission rates. Patient satisfaction scores. Net promoter scores. Clinical outcomes. Throughput. Efficiency.

I get it. The accrediting bodies require it. If you don't measure it, you get dinged.

But here's the problem: none of it captures what families actually remember.

Families don't remember their average wait time. They remember whether anyone looked them in the eye.

They don't remember the satisfaction survey. They remember whether they felt like a case file or a human being.

Those surveys? Families hate them. Everyone sends them. Every provider, every department, every specialist. They ask the same questions. They arrive in the same overwhelming mailbox. And none of them ask what actually matters.

No survey asks: Did you feel seen?

No survey asks: Did anyone sit with you when you were falling apart?

No survey asks: Did you leave feeling more alone, or less?

No survey asks: Did you feel cared for? Did we meet your actual needs?

We measure whether expectations were met — not whether someone felt supported. Not whether someone felt seen.

We measure likelihood to recommend — not whether a family carried trauma out the door that will live in their bodies for years.

We measure what's easy to count. What looks good on dashboards. What can be benchmarked and reported.

We built systems to measure satisfaction. But satisfaction is not the same as being seen.

And the distance between those two things is where families break.

I've talked to hundreds of families over the years. The ones who carry the most lasting pain aren't always the ones with the worst clinical outcomes.

They're the ones who felt invisible. Unseen. Processed.

They remember the billing department that sent them to collections while they were still in treatment.

They remember the scheduler who couldn't answer a simple question.

They remember the silence after going home — no call, no check-in, no acknowledgment that their world had just been shattered.

They remember the surveys asking them to rate their experience on a scale of one to five, as if the depth of what they are living through could be captured in a number.

The system tries to measure their satisfaction.

They are never satisfied. How could they be?

And it never measures their humanity.

That's the gap. That's the failure. That's what we're getting wrong.

Healthcare Leaders, I need you to hear this:

Culture isn't an accident. It's a series of decisions.

You decide what gets measured. You decide what gets resourced. You decide what gets rewarded.

When you only measure efficiency and throughput, you tell your teams that the human experience is secondary.

When you fail to train staff in trauma-informed communication, you leave them unequipped for the moments that matter most.

When you treat compassion as a personality trait instead of operational infrastructure, you ensure that only some families get seen — depending on who happens to be working that day.

And when you keep sending the same surveys asking the same wrong questions, you signal that you don't actually want to know what families experience. You just want a number to report.

You built this system.

You can unbuild it.

I'm not suggesting we throw out every metric. Clinical outcomes matter. Efficiency matters. Accountability matters.

But we need to add the questions we've been afraid to ask.

Not "Were you satisfied?" but "Did you feel seen?"

Not "Would you recommend us?" but "Did you leave feeling more alone, or less?"

Not "How was your wait time?" but "Did anyone sit with you when you were falling apart?"

These questions are harder to quantify. They don't fit neatly on a dashboard.

But they measure what families actually carry — for years, for decades, some for the rest of their lives.

Twenty-one years ago- almost to the day, my families intensive medical journey ended. My son is thriving.

And still — my body knows before my mind does. The tightening in my chest. The clench in my stomach. The dread as I reach for the mailbox.

That's what unresolved system failure does. It doesn't stay in the past. It lives in the body. It becomes part of who you are.

What you measure reveals what you value.

And right now, we're all measuring everything except what matters.

Families are paying the price.

In their bodies.

For decades.

Annette Logan-Parker is the Founder and Chief Advocacy & Innovation Officer at Cure 4 The Kids Foundation, Nevada's only outpatient pediatric cancer and rare disease treatment center. She chairs the Nevada Rare Disease Advisory Council.