Understand the System. Design the Advocacy.
In the late afternoon of March 10, 2020, one day before a world-wide health crisis was declared a global pandemic, I sat with a high fever in the tense, crowded waiting area of the emergency department at a large teaching hospital in New Orleans. I was anxious, worried about whether the hospital was equipped to care for the flood of symptomatic patients in these uncharted waters, and I was especially nervous about the uncertainty of being able hear my providers’ questions and explanations. Everyone, of course, was wearing a mask.
As it turned out, I was exceedingly fortunate that afternoon, despite the fact that I was very ill. The ER physician who examined me not only allowed me to use the voice-to-text app on my phone; he lit up with interest when I showed it to him and immediately began to a demonstrate the technology to the various providers entering our examining room. I vividly remember thinking that as he moved through the process of diagnosing my symptoms, he was collaborating with me, actively and without hesitation, around the task of achieving accurate communication.
An Awareness Deficit
The quality of innate awareness that an individual provider brought to my care at the beginning of the pandemic can go a long way in bringing a protective quality to the healthcare experience. Awareness creates conditions for a real partnership between patient and provider - even when competing needs arise in the medical environment. But as is so often true for communication partners in general, providers may know that a person has a hearing loss but remain unaware of its impact and needed adaptations. Awareness about the lived experience is uncommon, and this creates one of the significant barriers to communication access in our healthcare experiences.
Gaps in Medical Education
Public health research underscores the role that medical education plays in shaping provider perceptions of disability and approaches to patient care. Such studies reveal that training focuses on the health issues that patients present, at the exclusion of features of care that accommodate the needs of patients who live with disabilities. Thus, for patients with hearing loss, communication access often goes unaddressed, while challenges face providers who care for such patients in systems not equipped to identify hearing status and accommodation requests.
Competing Needs
The integration of systems that support communication access can also be negatively impacted by a host of competing needs in medical environments. Staffing constraints, time pressures, high patient volume, and other competing clinical priorities are among the many factors that can shape how care is delivered, impacting the pace of including communication access into standard workflows - and leaving providers to accommodate individual needs within systems that may not be designed to support them.
Understanding the Barriers to Access Has Fueled My Advocacy.
Becoming more aware of real factors that stand in the way of systemic communication access has transformed my response to healthcare encounters that fail to support my communication needs, depersonalizing the experience and fueling my determination to act.
I’ve become more proactive in planning for appointments and determined to teach my providers about my hearing loss and communication needs. I explicitly ask my providers to help me and intentionally watch for opportunities to briefly share my lived experience - including my worries about the possibility of mis-hearing important information.
I invite my providers and other allies within my healthcare system to work with me on implementing information included in the Communication Access Plan I’ve uploaded into my patient portal, and I try to remain mindful about working with creativity and flexibility with my providers when facsimile options to access are substituted for those I’ve requested.
After every healthcare experience, I offer positive feedback, sometimes to multiple players in my healthcare, about successful communication access. I also don’t hesitate to critique experiences that fail to meet my communication needs.
As I continue a dialogue with my providers, I plan to share implementation resources that have been created for healthcare professionals, designed to raise awareness with solutions for meeting the communication needs of patients with hearing loss.
The Long Game: Power in Numbers
Some fifty million people in the U.S. live with hearing loss. If healthcare systems are going to become equipped to meet the communication needs of this population of patients, a substantial portion of us will need to strategize our advocacy and commit to creating the change we are seeking. Over the long game, a significant groundswell of patients invested in developing robust communication partnerships with allies and holding healthcare systems accountable just might move the needle toward greater awareness and improved systems for healthcare access.
Peggy Ellertsen
