By Ainsley R. Latour
As a young health care professional, I commonly hear the phrase “patient centered care.” What does this mean? The patient is surrounded by a circle of health care professionals, all working on their behalf. The patient has the right to be informed and participate in their care.
How do we, as patients with hearing loss, who communicate orally, actually participate in our care? And how receptive are health care professionals to requests for accommodation for a disability? What processes exist at the hospital to accommodate patients with hearing loss during hospital stays? What experience do health care professionals have in providing and negotiating accommodations (the accommodation process) for hearing loss?
I believe we have a lot of work to do to advocate for the needs of oral hard of hearing people in the health care system. I recently had a week-long stay in an Ontario hospital following what turns out to have been life-saving surgery, for which complete deafness following surgery was a real possibility. As a result, it was important to us to have a communication plan in place. My fiancé and I were traveling to the hospital once a week for about 8 weeks to prepare for my surgery. We requested accommodations for my hearing loss five weeks before surgery through the patient advocacy office at the hospital. At first, the patient advocacy office sent us a list of places to stay, as they had misinterpreted our request to speak with them about “medical accommodations.” Once they understood our request, they referred us to the hospital’s Accessibility Office, where we were offered the services of a sign language interpreter. This was absolutely not an appropriate accommodation for us, as I am not fluent in ASL. Moreover, in a stressful situation like major surgery, I wouldn’t have had the cognitive capacity to access my skills or knowledge in ASL. My fiancé and I politely refused any interpreter services.
In healthcare, professionals often follow “standard operational procedures.” These procedures protect the patient and healthcare workers, and ought to be strictly followed. The hospital has a procedure (and experience) for booking interpreters for patients (either for a spoken or sign language). They do not have much experience (or as I found it, my surgeon had no experience), in individualized accommodations for a disability. As a result, they directed my fiancé and I to talk to my surgeon about the requested accommodations. He directed us to another member of the surgical team, who in part directed us back to the accessibility office. The accessibility office directed us back to the patient advocacy office, who directed us back to the surgeon. In short, no one was willing to actually embark on the accommodation process for us, until two weeks before surgery. Largely, I believe this is because they didn’t know how. While the hospital has an accessibility policy, my surgeon, and, it seems, the accessibility office didn’t know and/or have a procedure for providing individualized accommodations outside of an interpreter.
You may be wondering what accommodations we actually requested? We asked to have a note attached to my chart that stated that I was hard of hearing, and which identified my fiancé as my primary communication facilitator as required. We asked for visiting hours to be waived for my fiancé. One of his roles was to teach the hospital staff to use my FM. He also acted as an oral interpreter, when necessary. We asked that my fiancé be allowed in the OR, where he would have my FM on so I could respond to any requests before I was “put to sleep” and so he could take my hearing aids off after I was “asleep” (the hospital assumes no responsibility for lost hearing aids or FM’s and I was absolutely not comfortable with the possibility of losing this equipment). We also asked that my fiancé be in the post-anesthetic recovery room for me before I woke up to facilitate communication there. I was firm in my belief that simply telling a busy healthcare provider to face me, and other communication behaviours was unlikely to result in successful communication. Healthcare providers are busy, they may forget, and these behaviours are best put into regular practice through, well, practice. In short, the skills and knowledge an oral interpreter or communication facilitator brings ought to be respected in the same way the skills of a sign language interpreter are. One doesn’t become appropriately skilled at interacting with hard of hearing people based on simply having been told about communication “tips” for this population.
Eventually, my fiancé and I traveled to the hospital where surgery was to occur, without a scheduled appointment, to speak in person with my surgeon’s clinical coordinator (who works behind the scenes, she is not a receptionist). We brought up the request for accommodation with my surgeon a second time. We obtained copies of the hospital’s accessibility policy, and quoted this policy to the staff. Only days before surgery, we were granted all the accommodations we had requested! Remember the standard operational protocols that are always followed in healthcare? We needed an individualized accommodation plan for my chart. Something that formally outlined the plan of treatment, with my accommodations stated in it. My surgeon, with the patient advocacy office, composed an individualized care plan, stating my medical accommodations, and signed by my surgeon. This was attached to my chart.
My surgeon’s clinical coordinator was amazing at coordinating the “made up” process of creating my accommodation plan once we had convinced the hospital that we were not going to be deterred from our request. In fact, once the clinical coordinator was on board, she added her own input to our accommodation process in terms of giving us a tour of all the places I would travel in the hospital, and even introducing us to staff who would assess me post-surgery or who had leadership roles within the units I stayed in at the hospital.
As a result, we had a successful stay in the hospital! My FM was really supportive, especially in the first hours after surgery where I couldn’t see or hear or speak in the way I normally was able to. We wrote thank you notes and delivered gifts to all the staff who helped us during our stay. It was especially important to us that we recognized the efforts of my healthcare providers in the accessibility process.
In the weeks following surgery, my surgeon’s clinical coordinator has asked us for feedback on the accommodation process, as we are apparently the first patient they have made accommodations for. And I know my surgeon has seen hard of hearing patients before!
In summary, educating others about the differing needs of oral hard of hearing people (vs the needs of Deaf patients) is NOT enough. If I was profoundly deaf and required a sign language interpreter in the OR, my needs would have been met without question. Instead, we experienced a long and stressful advocacy effort to have my needs met.
We, as oral hard of hearing people, must work to create or enhance the policies and procedures in place at the institutional (hospital at large) and departmental (the specific clinic or physician) levels around individualized accommodation(s) for a disability. We must also work to create an awareness among other members of the disability community of the right to individualized accommodations in the health care setting. Furthermore, we must work to change the attitudes of healthcare professionals, and those who educate healthcare professionals around disability.