Deaf and HOH patients are often dissatisfied with their healthcare & are more likely to have poorer outcomes than hearing individuals. What can we as clinicians do to provide better care for this patient population?
Madison Maines MPAS, PA-C, a graduate from MCPHS Boston in 2022, is an orthopedic PA in South Jersey. She has been involved in the Deaf community since first taking ASL classes at Rowan University over 5 years ago – and has remained involved in the Deaf community ever since. She saw firsthand the difference in quality of care and the effect on patient outcomes — and more importantly, patient lives — that this difference can have.
Madison Maines MPAS, PA-C, a graduate from MCPHS Boston in 2022, is an orthopedic PA in South Jersey. She has been involved in the Deaf community since first taking ASL classes at Rowan University over 5 years ago – and has remained involved in the Deaf community ever since. She saw firsthand the difference in quality of care and the effect on patient outcomes — and more importantly, patient lives — that this difference can have.
Understanding Your Patient Population:
There are multiple different hearing statuses & understanding this is important when creating plans of care. “Hearing” is defined as hearing thresholds of 0-20 dB or better in both ears. Over 15% of the US population does not meet this threshold for hearing. In other words, you will have patients with barriers to hearing – but you’ve likely already encountered them! Knowing the preferred terms “d, Deaf , HOH , DHH” versus those which may potentially be offensive such as “hearing impaired,” “disabled” and/or “deaf & dumb,” etc. is crucial.
Awareness: Deaf vs. HOH vs. Deafened Individual
“Deaf” usually means a person has little to no functional hearing, which may be referred to in the medical community as “profound deafness.”
d/Deaf (lowercase d vs. capital D) is a cultural topic within the Deaf community. Being familiar with this distinction can show your patients you know about and respect their culture. In my own practice, I use lowercase d, deaf when referring to the audiological condition of not meeting the 0-20dB hearing mentioned earlier. When referring to my patients who are a part of the Deaf community, I use the capital D, Deaf because I feel it shows respect and admiration for the Deaf community which I have been welcomed into.
“Hard of Hearing/HOH” typically means the patient has some residual hearing that may be amplified with devices. Keep in mind that just because the residual hearing may be amplified with devices, it doesn’t necessarily mean the patient will choose to do so.
“Deafened” individuals experience a change in or decline of hearing due to a particular incident or over time, typically after initial language acquisition. This population is less likely to identify with the Deaf Community–they may prefer lowercase deaf, or they may not be familiar with the distinction at all. Therefore, they may prefer reading/writing to communicate in the healthcare setting. This population may also use the term “late-deafened.”.
DHH or D / HH= Deaf / HOH
“Hearing impaired”, although previously a preferred term, can be considered offensive, as the verbiage implies the patient is less-than/impaired vs. patients with full hearing. Similarly, “hearing loss” is not a preferred phrase either.
People who are born deaf may not feel as anything has been lost since they never had hearing. Some people do not view their deafness as a loss because they have gained an identity and culture as part of the Deaf community.
It is not a reflection on intelligence or ability, and using these terms implies otherwise. “Deaf & dumb” is, as you can imagine, an offensive term … yet it is still one I have heard from colleagues in practice. It is outdated, offensive & inaccurate, and clearly should never be used. Likewise, “deaf-mute” is also offensive as it implies that these individuals do not have a voice/a say/an opinion.
Persons who are born deaf or lose hearing before language acquisition are more likely to use a non-verbal language such as American Sign Language (ASL) or Signed Exact English (SEE). It is best to ask a patient what forms of communication they prefer you to use, much like how you would ask about patient pronouns or preferred ways to be addressed, as there will always be patients who are exceptions to the above statements.
Deaf Awareness Healthcare Facts:
Deaf/HOH patients are less likely to present to primary care for non-urgent care, less likely to attend routine or follow-up visits, and are more likely to have comorbidities or poor health outcomes than hearing patients. This could be the result of various factors – not feeling well-connected or well-understood by their providers, fear of not having an interpreter readily available/having to wait hours for an interpreter to arrive, or lack of understanding of plans of care due to inadequate communication from providers, to name a few.
Other factors that may be contributing to Deaf and HOH patients’ statistical likeliness to have poorer outcomes compared to their hearing counterparts are as follows:
- Deaf and HOH patients have higher mortality rates
- Longer length of stays when admitted
- Higher rate of readmission within a 30-day period
- Higher healthcare costs
- Deaf/HOH patients are more likely to have comorbidities than hearing patients
Involvement & Immersion into the Deaf Community
The best way to be an advocate for any patient is to be as informed as possible and create meaningful connections with them. Immersion is a great way to learn the values of any culture, not just Deaf culture! It also provides opportunities to practice your signing. Below is a list of local organizations & resources to get involved in the Deaf community in and around South Jersey.
- Deaf and Hard of Hearing Coalition of South Jersey – part of Allies in Caring, this organization is committed to supporting, empowering, and connecting the DHH community in South Jersey – more information available at https://www.alliesincaring.org/sjdhhc
- Deaf Events on Facebook – NJ Deaf, Deaf and Hard of Hearing Coalition of South Jersey, Atlantic County Society of the Deaf, Deaf Night Out New Jersey
- National Association of the Deaf (NAD), American Society for Deaf Children (ASDC), American Speech-Language-Hearing Association (ASHA), World Hearing Forum, and others
Interested in becoming a better patient advocate? A CBIS credential is a great way to start — learn how to approach, treat, and advocate for the brain injury population today!
Furthering Your Education:
There are many resources on cultural competency which can help us be better healthcare professionals when it comes to serving all patients – it goes beyond just Deaf Awareness week! There are educational opportunities and resources (much like this article series) to learn what we can do each day in practice to show our patients we value and care about them outside the office/clinic/hospital, etc. as much as when they are in it.
- American Sign Language courses
- Deaf and Hard of Hearing Coalition of South Jersey starting October 4th (see @sjdhhcoalition on Instagram for more information!)
- Local universities – Rowan University Glassboro, Rowan College at Burlington County (RCBC), and others
- Online courses/resources – Signing Savvy, Dr. Bill Vicars, Gallaudet University Online ASL Courses
- Apps: Marlee Signs, The ASL App, ASL Dictionary
- Media: watching & supporting media about the Deaf can be another way to learn about the community – CODA, Deaf U (Netflix), etc.
- Support Deaf-owned businesses, create accessible content, support Deaf influencers, share information to raise Deaf awareness, etc.
Ten Actionable Items For Clinicians: Communicating with the Deaf or HOH Patient
As healthcare professionals, we play an important role in the lives of all patients but especially those who are underserved, underrepresented, and/or marginalized. The fact that you’re reading this article already shows your compassion and commitment!
- Understanding your patient population is key!
- Ask about preferred method(s) of communication – American Sign Language (ASL) is not universal, even within the US. ASL is a language with its own grammatical structure which is different than English. Some patients use Signed Exact English (SEE) which is using ASL signs in English order/grammar. Some patients use “home signs” which do not not follow ASL or SEE and is the result of hearing parents trying to gesture to communicate with their DHH child at a young age.
- Reading & writing out the entire encounter should NEVER be first move unless the patient declines the offered/provided interpreter. If you would not assume a hearing patient can read/write/has great health literacy, you should not assume anything about your DHH patients, good or bad.
- Lip-reading is not an appropriate method of communication, even if the patient tells you they prefer it. It has been shown that lip reading, AT BEST, is only 45% accurate. Utilize other forms of communication to more effectively meet your patient where they’re at — such as an interpreter services and visual demonstrations in conjunction with written instructions.
- Use certified, hospital- or clinic-provided interpreters instead of who comes with the patient. Attempting to interact with your patient without these services opens up the potential for neglect, abuse, or malpractice. This also can help build patients’ feelings of security, privacy, trust and understanding as well as increasing the likelihood of good patient outcomes.
- Technology-assisted interpreting services are not the preferred method for translating. Unlike verbal translating services via phone for languages such as Spanish or French, ASL is a visual language and therefore in-person is the most effective form of communication. Although ASL is the official signed language in the US, there are regional differences in signing, much like how there is slang or accents in spoken English! For example, if you are treating a patient here in South Jersey and the virtual interpreter is located in California, there can be a mismatch in communication. To add, video interpreting services require high bandwidths, and technology has a habit of glitching when you need it most. Advocate for in-person interpreting services for your patients when possible. If they are not, video services can be used but should not be an office’s sole source of interpreting.
If advocacy is your jam, check out these tips for advocating for your acute care patients!
- Look at the patient, NOT the interpreter. It may be tempting to look at the interpreter because we’re so used to looking at who we speak to, but the interpreter understands you aren’t being rude. Looking at your patient further establishes the patient-centered care approach which has been proven to lead to better outcomes.
- Consider your office layout: is it Deaf-friendly? “DeafSpace” is a concept coined by Hansel Bauman and Gallaudet University and implemented in many Deaf-oriented spaces. Deaf-friendly spaces are well-lit, open-concept, and painted with colors that contrast the skin to easily see signing hands. If you’re passionate about accessibility, this is a great resource!
- Understand that your role within the Deaf community as a hearing person will always have certain boundaries. There are certain instances where it’s acceptable for a deaf individual to do something which would be offensive for a hearing person to do. For example, there are customs associated with choosing a “name sign” — which is a sign used in place of having to fingerspell out your name each time in conversation. Deaf individuals can choose their own name sign, but it is considered unacceptable for a hearing person to do the same. A Deaf person may give you a name sign which you can then use, but choosing your own name as a hearing person is disrespectful to Deaf culture.
- Recognize the bias you may be bringing to the encounter, try to consider your patient’s cultural values, and be respectful of their decisions even if it differs from your initial recommendations. Rehab practitioners are great at recognizing the impact of cultural difference, personal values and preferences and how that impacts a patient’s interactions in the daily world – even then it can at times be hard to respect a decision that is different from our own perspective. Members of the Deaf community are proud of their deafness and may make certain healthcare decisions which may not be what you’d recommend/choose yourself.
Final Clinical Gems on Communicating with Deaf and HOH Patients:
- Not all people who sign/use gestures for communication are Deaf – some people love to “talk with their hands!” Some people who have difficulty with language production/phonation use ASL but are not Deaf.
- Not all signed language is ASL in the US! There are multiple signed languages – such as British Sign Language or French Sign Language, as well as combination signing and visual aids such as with Makaton.
- Shouting and over-enunciating is unhelpful, and can even come off as rude. Speaking slower doesn’t always help the patient understand you better, even if the patient states they can “lip-read”.
- Using facility-provided, certified interpreters minimizes the risk of neglect and malpractice.
- Seek out opportunities to connect with your DHH patients and practice your signing.
- Nothing is universal. If you are unsure of something, ask!
Finally, Happy Deaf Awareness Week (Sept. 19-25, 2022) from your friends at ARC Seminars!