What it really means to be seen, known, and understood
Why the medical community needs to take more action - By Craig Radford, Senior Vice President, AvodahMed
One of our most basic needs is to feel seen, known, and understood.
The slight take on this famous quote by Dr. Ralph Nichols, known as the “father of the field of listening,” takes on new meaning in today’s pandemic-affected world. In rebuilding our social and work cultures, we have a new appreciation of authentic human connection truly being the cornerstone of well-being.
Unfortunately, patients with disabilities and those in marginalized communities face immediate barriers to human connection, enduring long-standing discrimination and lack of acceptance. They are involuntarily part of a rising population that continues to be underserved and underrepresented ─ especially in healthcare.
This is especially dramatic for the 1.5 billion people globally who live with hearing loss, a number that could rise to 2.5 billion by 2050, according to the World Health Organization. Against this backdrop, a Deaf person interacting with America’s fragmented and overstressed healthcare system faces overwhelming challenges. Top issues include inadequate access to healthcare, lack of health knowledge, and limited educational materials provided in sign language, all contributing to communication barriers and the risk of further marginalization.
Four tiers to help providers achieve the best possible healthcare experience for underserved patients
Medical leaders can institute the following four tiers across their organizations to help alleviate many of the health disparities experienced by individuals. As a member of the Deaf and hard-of-hearing (DHH) community, I can vouch from personal experience that this work must be done for all marginalized people.
1. Compliance. Healthcare organizations must demonstrate an effective compliance program ensuring regulations are met that mandate diversity, equity, and inclusion of individuals, including patients and those in the workforce. Just checking off boxes as a bare minimum to be legally compliant is not good enough.
2. Accessibility. Although the health reform movement brought about positive changes, plenty more is still needed. Regardless of the patient’s disability, ethnicity and language, providers must support every patient’s accessibility to affordable and convenient healthcare beyond obligatory basic information.
3. Inclusivity. A hot topic these days, healthcare organizations must offer equal access to opportunities and resources for people who might otherwise be excluded or marginalized. As a Deaf person, I understand this all too well from my own accessibility needs: my desire is to communicate with any individual and thrive in any type of environment.
4. Sense of belonging and being understood. For the most part, I do feel that I am seen and heard when visiting the doctor. But my sense of connection is strengthened if paired with a sense of belonging and a feeling of being understood. My community is indeed becoming “known” and “heard” in healthcare, but we still have a ways to go. Many providers have yet to commit 100% to create a culture where the DHH and other types of marginalized populations are fully understood in a societal sense of true belonging. Making sure there is a seat at the table for everyone requires work.
More about No. 4: Sense of belonging and being understood
Vernā Myers, vice president of inclusion strategy for Netflix, is credited with voicing the quote: “Diversity is being invited to the party, inclusion is being asked to dance.” Her point is beautifully stated. But what is missing, I believe, is the recognition that there is a difference between being asked to dance and actually knowing the song and dance.
The same could be said from the Deaf patient’s perspective. Inclusion, in this sense, means showing up to a doctor’s appointment where an American Sign Language (ASL) interpreter is provided ─ considered the bare minimum of accessibility required to meet compliance ─ and that’s it.
Within the Deaf population, there’s also a subset of people who share a distinct Deaf culture. Being Deaf is unique because it includes both a unique culture and a language. United (within the U.S.) by their primary use of ASL, they identify as a linguistic minority. As a result of this diversity, it’s often challenging for organizations, including the medical community, to meaningfully engage with Deaf patients.
This “sense of belonging and being understood” tier also points to what is not being done in healthcare: actively looking through the lens of holistic practice management where all options are explored to ensure the DHH patient feels safe, secure, and engaged.
If this particular practice environment is refocused to accommodate most every marginalized or socially excluded individual’s need, then the patient begins to build, psychologically, a stronger, authentic sense of belonging. Feeling encouraged and accepted, they interact in the fullest sense as an integral member of the practice environment.
There are no barriers, no tension, and no disconnects when a patient feels like they belong. They are more vulnerable in sharing their life and health struggles. Doctors, in turn, are more engaged in diagnosing and treating the root cause of their medical problems.
ED study highlights common challenges experienced by DHH ASL users
A research study paper, https://journals.sagepub.com/doi/10.1177/10497323211046238, published Nov. 25, 2021, revealed Deaf people who use ASL are more likely to use the emergency department (ED) than their hearing English-speaking counterparts and are also at higher risk of receiving inaccessible communication.
The team of co-authors found that:
· Requesting communication access can be stressful, frustrating, and time-consuming for Deaf patients
· Video remote interpreting impeded effective patient-provider communication
· Written and oral communication provided insufficient information to Deaf patients
· ED staff and providers lacked cultural sensitivity and awareness toward Deaf patients
In short, the study calls out reasons why DHH people often feel frustrated visiting the ED or their local provider. Because of the constant lack of information and understanding of their needs, these patients are unable to retain an authentic connection even when seeing the same doctor regularly. Trust issues are common.
My story as a Deaf parent
Many years ago, my son, who is Deaf, was admitted for surgery and accompanied by my wife, who is also Deaf, and me. Sitting in the hospital’s preoperative room, we spoke with his physician through an ASL interpreter, whom we found out later was not certified. But we understood the interpreter had been made accessible and thought, “That's okay, at least they provided someone,” even as we noticed during the interpretation that their skillset was sorely lacking.
The doctor asked if my son had allergies to which I provided names of medications causing allergic reactions. The interpreter translated our identification of the drug allergies for the printing of a wrist armband. Instinctively, I felt something was wrong during the voiced interpretation. Just prior to he being wheeled in for surgery, I checked my son’s wristband and discovered a life-threatening medical error. I clarified the right medication by writing it down on paper. The doctor corrected the wristband printing, and my son had his surgery and recovered.
This experience is a parent’s worst nightmare. I still distinctly remember the doctor’s vibe ─ he simply wasn't fully engaged. He spoke to us as if our communication exchange was an obligation and underestimated our intellect. The problem causing this disconnect was our hearing loss, his perception of what that meant, and lack of effective communication.
Tips to help healthcare providers do better in sensitive situations
To be clear, authentic human connection does not represent one marginalized community. It applies to all individuals in the healthcare space to assure a sense of belonging and well-being. Our dedicated providers and the offices they work in must create the conditions for their patients to feel seen, known and understood.
1. Get ahead of being inclusive. In addition to being reactive when alerted of the need to provide accommodations for the patient, be proactive and accessible prior to the visit. Many doctors arrange in advance for interpreters to be present for patients who use ASL. In some cases, the interpreters are not always qualified. The provider can take the extra step individualizing the care of their patient by learning cultural etiquette and inquiring about any specific individual needs, such as communication, preferred accommodations and more.
2. Reframe how you perceive patients with disabilities and other challenges. I’ve always informed the physician upfront that the value of an ASL interpreter present is not for me but for he or she who is a hearing person. If healthcare professionals do not sign, they do not use ASL; therefore, a communication barrier exists between the patient and doctor. The interpreter is present for both of us.
Moreover, this situation is not entirely about a Deaf person requiring the accommodation. It’s also about how the DHH community is unintentionally and unfairly placed in the light of underestimation, judgement and treatment unequal to the hearing person. A continuous look of surprise prevails upon finding out that I, as a “Deaf patient,” have a master’s degree, executive-level employment, and other credentials. The surprise exists because of the hearing individual’s inaccurate perception of what a Deaf person is able to achieve in this world. The answer and preconception should be: anything that person so desires.