The Broken Link: When Healthcare Systems Fail the Lifelong Patient

While every person is a patient from birth, navigating the healthcare system for routine checkups or the occasional emergency, some of us carry a different title: lifelong patients.

For those of us with complex health needs, the healthcare system isn't just a place we visit; it’s a landscape we’ve been forced to master. This lived experience has taught me that lifelong patients often understand the nuances of care and navigation better than the systems themselves.

I had open-heart surgery when I was just 16 months old. For decades, I have been monitored by a cardiologist, but as of last year, my care expanded to include being monitored by a Cardiac Electrophysiologist and an Interventional Cardiologist for treatment as an adult.

I am not a stranger to hospital halls. I know the protocols and I know my rights. Yet, even with a lifetime of experience and a month of proactive advocacy, I witnessed a dangerous "Telephone Game" unfold between the Requestor, Language Services, and the Interpreting Agency prior to my interventional cardiology procedure.

When these three pillars fail to sync, the patient—no matter how seasoned—is the one who suffers.

The Requestor: A Paper Trail to Nowhere

In a large hospital system, the "Requestor" most often refers to clinical staff or admin staff who work with patients to coordinate appointments.

With regards to my recent procedure in December 2025, I connected with the surgical scheduling nurse and explicitly requested continuous, in-person ASL interpretation to cover pre-op, the procedure, and post-op for my procedure.

However, the request was submitted specifically to align with the exact start time of my procedure, covering a five-hour window. This service window entirely omitted the vital pre-operative phase where informed consent is finalized.

The most jarring discovery? When I investigated the error, the hospital’s Language Services department had no record of who actually submitted the request. Without this critical paper trail, there was zero accountability to ensure my legal right as a patient met the threshold of effective communication at all critical points. Simply put, my access to effective communication was negatively impacted before I even entered the hospital doors.

Language Services: Policy as a Shield

After my procedure, I raised concerns about the scheduling gap with the surgical scheduling nurse and asked what happened. She advised that it was the hospital’s policy that an in-person interpreter can only be booked for a total of five hours.

However, a direct conversation with the hospital’s Language Services department revealed a different story… While a single interpreter has a time limit of five hours, the hospital’s policy allows for additional requests to be submitted in advance to provide "interpreter relief" and ensure continuous coverage.

The Process Gap: The surgical scheduling nurse didn't understand the nuances of their own hospital’s language policy. Furthermore, Language Services didn't have the oversight to flag an insufficient request. This administrative oversight left me without critical communication access and ultimately a poor patient experience.

The Interpreting Agency: Passive Compliance vs. Proactive Advocacy

Typically, the interpreter agency will serve as a ‘safety net’ to ensure continuous coverage. Yet, in this case, the agency's lack of proactive advocacy only widened the gap.

A couple of weeks prior to my procedure, I spent over 90 minutes with these three critical administrative stakeholders just to simply confirm an in-person ASL interpreter. Despite my added labor, my frustrating experience only compounded when I connected with the interpreter agency. 

Despite my own proactive advocacy to ensure continuous coverage, the interpreter agency cited HIPAA regulations and refused to even confirm or deny receipt of a request from the hospital, claiming they were prohibited from discussing any details with the service recipient and could only communicate with the hospital directly.

With appreciation that the interpreter agency heavily protects data as a healthcare industry standard, I strongly believe they have a right to serve as a proactive partner to ensure 100% communication access for the community they serve. For instance, a proactive approach may involve the agency taking the lead to inquire about my preferred interpreters and "do-not-send" list. Ultimately, when an interpreter agency hides behind a 'Requestor-only' communication policy, it effectively silences the patient (no pun intended).

Yet, the access gap didn’t close here. The interpreter agency ultimately is responsible for ensuring complete, uninterrupted communication access throughout the service. Given the flawed process and red-tape, I’m left to speculate as to whether the interpreter agency pushed back on the hospital’s initial request of providing an interpreter only for five hours. Instead, they permitted the errors of the hospital to go unchecked.

Technology Creates an Illusion of Access

Another barrier faced was rooted in the shortcomings of technology. When the hospital system failed to provide an in-person interpreter for pre-op, they pivoted to using Video Remote Interpreting (VRI), a video-conferencing service that provides real-time access to a remote interpreter.

For a patient in a high-stakes medical environment, VRI is often a failure of both technology and ethics.

During my pre-op, the VRI device froze. The interpreters couldn't hear the doctors and nurses over the background noise in the pre-op area. The nurses were forced to reboot the machine while my procedure time ticked closer and closer.

When I reported this unacceptable experience to Language Services after my procedure, their team was entirely unaware of the failure. There was no formal process for clinical staff to report real-time technology failures.

It’s safe to assume that without this pertinent information, hospital administrators believed my ‘needs were met’ between the provision of VRI and an in-person interpreter. Yet, insufficient coverage and poor access left me struggling to fully understand what was being discussed ahead of an already stressful cardiac procedure.

What’s Next?

Following my frustrating experience last month, I wrote to the hospital system's leadership team. I’m still waiting for a response. In the meantime, I have shared my concerns directly with one of the health system’s board members.

With a subsequent procedure scheduled for next week, I’ve been proactive about ensuring in-person interpreters are secured for every stage—pre-op, post-op, and daily rounds. Despite my outreach, the surgical scheduling team could only tell me that the request was "submitted."

The kicker? An interpreter texted me to let me know that they accepted the request for the day of my procedure.

It is a strange and frustrating reality when an outside contractor is more communicative than the medical facility responsible for your care. It’s a stark reminder that as patients, we are often forced to be the most informed people in the room just to ensure our basic right to communication is met.

I know I’m not alone in this. Through our work at 2axend, we have connected with hundreds of Deaf, DeafBlind, and hard of hearing individuals. Their stories are heartbreaking—a wide range of poor outcomes and traumatic experiences that are the direct result of subpar access and broken systems.

Closing the Gap

Providing equitable care for Deaf, DeafBlind, and hard of hearing patients requires more than checking the boxes —it requires sustained commitment, accountability, and informed solutions grounded in lived-experience.

As part of our commitment to moving the needle forward, 2axend is hosting the fourth annual Deaf and Hard of Hearing Experiences in Healthcare Summit on March 12, 2026. This year’s virtual summit centers on the theme “Beyond Compliance: Equity Through Access,” bringing together Deaf professionals, healthcare leaders, and communication advocates to examine what meaningful access looks like in practice—and how systems must adapt to achieve it.

If you haven’t registered, you won’t want to miss the candid conversations, real-world insights, and actionable takeaways that healthcare organizations can apply immediately. Register now at https://2axend.com/dhhsummit/.

Our work doesn’t stop there. Throughout the year, we also convene quarterly healthcare roundtables with representatives from health systems across the country. These sessions create space for honest dialogue, shared learning, and collective problem-solving around communication access, patient experience, and long-term equity.

Earlier this week, we also launched a new listserv for healthcare administrators, providers, and clinical leaders. It serves as a dedicated space to share expertise and discuss:

• Integrating accessibility into standard clinical workflows and intake.
• Navigating ADA requirements and federal health equity mandates.
• Evaluating assistive technologies and interpreting services in medical settings.
• Reducing diagnostic errors and improving patient-centered care.

Sign up for the listserv at https://2axend.com/healthcare-listserv/. 

In 2026, it’s time to move beyond compliance and into durable change. We look forward to partnering with you to drive equitable change!