The Illusion of a Fix: When “Better” Still Isn’t Good Enough

Last week, I had my second of two cardiac procedures. From a medical standpoint, all is good. And from an access standpoint, my experience was better this time around… But that doesn’t mean the system is fixed.

This visit was the polar opposite of my last one that I discussed in my blog post two weeks ago. Same cardiac institute, different team—but it might as well have been a different healthcare system. Last time, I was fighting broken processes and failed technology. This time, the hospital clearly put in the effort. I was flooded with confirmations: emails, phone calls, My Chart notifications, and even a physical letter at check-in stating that in-person interpreters had been scheduled. Staff were also wearing transparent masks throughout my stay.

On the surface, it looked like progress. But as I moved closer to the operating table, it became clear that this "improvement" was a bolted-on experience as a result of a “compliance first” mindset.

The Fragility of "Better"

The "paper trail" of progress felt like a defensive shield. The hospital was trying very hard to prove they were listening, yet the actual communication still felt fragile.

For example, despite inquiring with the surgical scheduling coordinator who my interpreters would be, I didn't  find out until one of the interpreters took the initiative to text me directly several days prior to my procedure. This shows another gap in the hospital’s "process.” An individual professional went above and beyond to bridge a systemic gap that still treats the human element of access as an afterthought.

The "What If" in the Room

The real “access test” happened in pre-op. It was a whirlwind: three nurses in the room, one typing away at a computer with her back to me, two others physically prepping me, all while there was background chatter in the adjacent nursing station. 

Thankfully, because of my own advocacy that preceded this visit, I had an in-person interpreter.

But what if I didn’t? If the hospital had "checked the box" with VRI—as they did last time—communication would have been very challenging. Just imagine trying to view an iPad affixed to a pole that is positioned next to you while three people are constantly moving around your bed and a nurse is speaking into a monitor. 

Once we moved into the cath lab, the scene turned into organized chaos. Between the equipment, the multiple team members, and the constant movement, it was challenging to see the interpreter as there were numerous people moving around and asking her to move as well. In that environment, a virtual connection wouldn't just have been difficult—it would have been impossible.

Vulnerability in healthcare is universal, but for the Deaf, DeafBlind, and hard of hearing community, our vulnerability is compounded. It is the chilling realization that my safety was dependent on my own pre-appointment advocacy—not the system's default setting. If I hadn't pushed, if I hadn't written that letter and then escalated my letter to one of the healthcare system’s board members, I would have been just another 'checkbox' lost in the 'organized chaos' of the cath lab. Our community shouldn’t need to bear the burden of being exceptional advocates just to receive standard care.

The Invisible Job: Patient as Project Manager

Even with the physical presence of an interpreter, the burden of coordination still fell on me. I couldn't simply be a patient; I had to be a project manager. I had to direct the staff on how to manage my hearing aids and glasses to ensure they weren't lost during the shuffle of clinical prep.

Most importantly, I had to advocate for myself during the "waking up" process. I had to explicitly instruct the team to ensure my glasses and hearing aids were placed back on me immediately and that the interpreter was in the room while I was waking up from general anesthesia. 

In those vulnerable seconds of returning from anesthesia, a lack of access isn't just a compliance failure—it is a source of profound fear grounded in self-autonomy. 

When access is "bolted on," the patient is forced to carry the stress of managing their own safety from the operating table. Advocacy may be step one, but follow through is out of the patient’s control. All we can do is inform, consent, and hope for the best in a system that doesn’t inherently support our needs.

Checking the Box

The performance continued even after the procedure. The manager of the step-down unit stopped by my room specifically to ask how communication was going and if the doctors and nurses were meeting my access needs by “communicating well with me.” 

This did not happen during my previous stay. While I do appreciate the check-in, it felt like the final line item on a compliance checklist—a point where they had to verify that no balls had been dropped. It felt less like a standard of care and more like a tactical follow-up to my letter to hospital administration after my previous visit.

Ironically, I mentioned that many of the team were using the clear masks incorrectly. Many of them didn’t take the film off of the mask, essentially defeating the purpose of these very masks.

Consistency Shouldn't Be a "Head-Scratcher"

The most unsettling part of this experience is the stark difference between two teams under the same Cardiac Institute umbrella. How can one experience be a systemic collapse and the other be a hyper-vigilant display of compliance?

The answer is simple: Access hasn't been built into the design. When accessibility is "bolted on" as a reaction to a poor experience, it creates pockets of excellence that exist in a vacuum. Access is left to rely on a specific team being "on their game" or a specific administrative push to create a paper trail.

Case-by-case access is a Band Aid, not a solution. We must move past 'ad hoc exceptions' and establish a system where baseline access isn't a head-scratcher - it's the expectation.

Beyond the Performance

An improved experience this time doesn’t mean the system is healed; it means the system performed for me this time. Until every team in every department understands that access isn’t a checkbox, the "fix" is merely an illusion.

We don't need healthcare systems to try harder at proving they've provided an interpreter. We need them to design care where communication access is as foundational as the surgeon.

This systemic flaw is precisely why I founded 2axend. We believe that healthcare systems cannot design effective access in a vacuum. My experience proves that while administrators can mandate a "paper trail," they cannot mandate a culture of equity without involving the people who actually navigate these barriers. The mantra "Nothing about us without us" must move beyond the slogan and become the actual blueprint for systemic design.

True equity is only possible when the lived experiences of the Deaf, DeafBlind, and hard of hearing community are at the table - finally moving us past compliance performance and into durable change.

If you’re committed to improving healthcare systems for all, I invite you to join us in moving the access needle forward. 

• Deaf and Hard of Hearing Experiences in Healthcare Summit (March 12, 2026): Join us for our virtual event where we bridge the gap between policy and practice. Register here: www.2axend.com/DHHSummit.
• Healthcare Roundtables: Join our quarterly sessions for honest dialogue and collective problem-solving among national health system leaders. Join us on February 19: www.2axend.com/healthcare-roundtable-discussions/.
• Healthcare Listserv: A dedicated space for providers and administrators to share expertise on workflow integration, assistive tech, and reducing diagnostic errors. Sign up here: www.2axend.com/healthcare-listserv/.

Durable change isn’t a checklist; it’s a commitment to shared experience. It’s time to stop checking boxes and start building a system that truly sees every patient. Let’s build it together.