Why trauma-informed care must include the messages we send
Lack of communication between providers’ information systems can lead to triggering messages that doubly wound grieving families.
Nearly three months after my son August passed away, I received a text message addressed to him. It was the kind of automated outreach healthcare sends every day – routine, well-intended and completely detached from reality.
But for a bereaved parent, it's not "routine." It's a grief trigger – a sudden collision between a system's workflow and a family's loss.
I shared the message in a LinkedIn post because I didn't want this to be one more private moment of harm that disappears into the void. I wanted it to become a learning opportunity, one that could move beyond sympathy toward real design change.
The text read, "[REDACTED NAME], this is [REDACTED ORGANIZATION], and we have been trying to reach you to schedule your Annual Wellness Visit. Please contact us at [REDACTED PHONE] at your earliest convenience. Reply STOP to unsubscribe. Msg&Data rates may apply."
If you've ever lost someone you love, you already know what happens next. Your body registers it before your brain can catch up. The grief you've been carrying in the background surges forward. You are transported back into the moment you were trying to survive.
This is why trauma-informed care must include the caregiver experience. An unsubscribe will not teach the system what went wrong. Learning requires intention, ownership and cross-functional design.
And what happened after I shared that message publicly is exactly why I believe we can do better. The response from the LinkedIn community wasn't a bash session. It was a grounded, human, professionally informed reflection. People across health plans, health systems, vendor teams, marketing organizations, data roles and caregiver communities are saying, in different words, that this keeps happening. And it shouldn't.
This isn't an edge case. It's a pattern
One of the first replies came from someone who said simply, "This hits me so hard. Similar experience."
Another person shared a story many caregivers will recognize. "Today, I received mail addressed, handwritten, to him at my home ... The clinical side knows he died. I've told the marketing person he's died more than once. I do not know why common sense cannot be baked into business processes."
Others described the "long tail" of healthcare communications after death. Messages, bills, reminders, invitations, surveys – all are small interactions that reopen the wound and erode trust.
One commenter wrote, "Even now, more than three years after [my loved one] passed, I still receive healthcare messages addressed to her."
Another said, "Two years later, and I still get emails addressed to [my loved one] from the hospital where she died. We need to and can do better."
When we talk about patient experience, we often narrow the focus to the clinical encounter – appointments, instructions, discharge planning and adherence. But the lived reality of healthcare includes caregivers, families, home life and grief. It includes what happens after the hardest days, when families are left to manage the administrative and emotional aftermath.
If our systems can't recognize critical life events and adjust communications accordingly, we're not delivering care. We're delivering noise, and sometimes, we're delivering harm.
The promise and peril of automation
Healthcare communications teams are doing what they've been asked to do – scale outreach, close care gaps, improve engagement and increase preventive visits. Automation helps. Personalization helps. Omnichannel strategies help.
But personalization without trauma-informed guardrails is not patient-centered. It's operationally convenient and emotionally dangerous.
One commenter captured this with a line that should live on every marketing strategy deck in healthcare. "This isn't the same as getting ads for hiking boots for 2 months after I already bought them. It's not the same."
Healthcare is different. We have a different mission. We can never forget that.
Another commenter put it more bluntly: "I'm going to be much less eloquent than everyone else ... this is total bullshit ... This is inhumane."
Strong language can make some people uncomfortable. But numbness is the bigger risk. As another person wrote, "I simply detest the dullness of our communication tools in healthcare."
Our systems are optimized to send the reminder, close the loop and hit the metric, without truly understanding the moment on the other side of the screen.
‘Just add a flag’ isn't enough
Whenever stories like this surface, two reactions usually show up at the same time.
One is, "How could this happen? It seems so obvious."
The other is, "It's complicated."
Both can be true.
One healthcare technology leader shared, "If it were as simple as adding a flag in the system, it would have been done long ago. But decades of fragmented systems, hospital mergers and unstructured data across EMRs have made this a heavy burden to carry."
They're right. Identity is messy. Data is fragmented. Vendor ecosystems multiply. Outreach triggers fire from multiple systems, each with their own logic. We don't have one communications pipeline-we have many.
But "complicated" is not an excuse. It's a design requirement.
This is where healthcare communications leaders can help, not just by writing better copy, but by shaping the workflows and governance that determine whether the message should exist at all.
Healthcare communications leaders can help
When I shared the text message, I offered specific steps because this problem won't be resolved through sympathy alone.
1. Partner across clinical, IT and CX teams to set bereavement flags and stop outbound messages across vendors and channels.
This is not just a CRM fix. If one system knows someone has died, that knowledge must propagate. "Stop" must be enterprise-wide, not channel-specific.
2. Build communications rules for critical life events.
That means death, pregnancy loss, mastectomy, end-of-life transitions and more. It also means rules for language, timing and opt-out safeguards for caregivers.
One commenter noted: "This is not an edge case. Healthcare communication systems somehow remain untethered to the reality of health, status, treatment status and, in many cases, life status." They pointed to examples many patients have experienced: reminders for mammograms after mastectomy, ultrasound nudges after pregnancy loss and messages like the one I received.
3. Test journeys with bereaved caregiver personas and empower frontline staff with escalation paths.
A persona isn't a marketing artifact – it's a safety tool. It forces teams to ask, what happens if this lands on the worst day of someone's life? And if harm occurs, what's the fast path to fix it and prevent it across the ecosystem?
4. Measure what matters beyond open rates: harm avoidance, sentiment and caregiver trust.
The absence of complaints does not equal the absence of harm. Many families absorb these moments quietly, and the damage accumulates.
Even ‘learning loops’ can be harmful
The conversation also surfaced another pattern: automated "feedback" requests appearing at the wrong time.
One person described it as a red-alert situation when fund-raising teams reached out to families after someone had passed.
For me, what really surprised me, even during treatment, were the automated survey requests after every discharge.
"Were you satisfied with the care you received?"
"... No. My child still has cancer. We don't want to be here."
Data collection can be valuable. Learning systems matter. But timing matters, too. There will be time to reflect and learn, but not during the crisis.
A chance to lead without shaming
The goal of sharing this isn't to shame any institution. The point is to clearly name the gap and design our way out of it.
Because patient experience is more than clinical experience. Communications intersects that sacred work on the same plane. We cannot lose sight of our role in the bigger picture, or the people we serve.
Health outcomes are more than compliance with care plans or perfectly timed reminders. Outcomes are shaped by how we talk to people and how we honor their reality in moments of pain.
If we are serious about patient experience, communications cannot be an afterthought. It is an integral part of care. I invite my peers in health systems, health plans and vendors to use cases like this as catalysts to improve the way we communicate, so families are met with dignity and humanity every time.
Erica Olenski, BCPA, CPXP, FACHDM, is associate vice president of FINN Partners. Her original LinkedIn post can be found here.