By ASTRO Journals Team
This month celebrates Deaf History Month, a commemorative time to celebrate deaf history as well as contributions made by the deaf community to American culture and society. We recently sat down with Colin Hill, MD, to discuss his recent publication, “Assessing and providing culturally competent care in radiation oncology for deaf cancer patients,” in the ASTRO Journal Advances in Radiation Oncology. Dr. Hill is one of a few deaf physicians in the United States and is currently completing his residency in radiation oncology at Johns Hopkins. He is a third-generation deaf member of his family and identifies as culturally Deaf, capitalized to reflect that he identifies with the culture and that deafness is not merely a disability.
As Dr. Hill explains in his paper, among people with hearing loss in the United States, there is a distinct linguistic and cultural minority of patients who identify as culturally Deaf and use American Sign Language (ASL), but these patients have not been well studied. Dr. Hill and the research team set out to better understand the needs and challenges deaf patients experience when receiving oncological treatment and performed a review of the literature using the PubMed database to descriptively characterize any existing treatment disparities in this population. Dr. Hill and his team used systematic analysis to identify three universal barriers to care:
- Poor health literacy among deaf adults.
- Accessibility to tailored health care resources for cancer-specific information.
- Poor linguistic and cultural competency among physicians, as physicians and other providers are limited by the lack of educational opportunities or practice guidelines that address how to provide culturally and linguistic sensitive oncological care.
To learn more, we reached out to Dr. Hill to answer a few questions.
Looking at the bigger picture, how could your findings impact patient care? What do you see as the key practice-changing implications of the research?
Colin Hill, MD (CH): We hope this is practice changing by, first, promoting awareness among medical providers about this patient population, emphasizing that they have unique linguistic and cultural needs that have been poorly addressed to date. Second, we hope to eventually promote change on a specialty and national level by developing a standardized care model to guide radiation oncologists and other providers in how to create total communication accessibility within a culturally sensitive framework when treating deaf patients.
Did anything about your findings surprise you?
CH: Shockingly, in a focus group interview, a deaf woman with breast cancer admitted, when asked, she still did not know what cancer was despite being a survivor! It is tragic that such reports of communication failures still exist. Even if a patient is limited by poor health literacy, we need to make every effort to ensure that we create the kind of communication accessibly to prevent such things from happening with our own patients.
How can organizations such as the NAD improve access for deaf patients?
CH: The National Association of the Deaf (NAD) has worked to improve care for deaf patients by improving accessibility for interpreting services, mental health, and creating legal precedents to set standards of care. However, their voice remains small and has not been heard by many in the medical community. The question, in my mind, should rather be what can we do to help organizations like the NAD continue to advance health care for deaf patients and magnify their voice to even further corners of the medical community. Specialty societies should be at the forefront of this conversation. For example, my co-authors, Drs. Curtiland Deville and Brandi Page, are members of ASTRO’s Committee on Health Equity, Diversity and Inclusion (CHEDI), which is poised to lead and collaborate on such initiatives given their mission to advance the status of minorities and the underserved in oncology through educational and professional opportunities, advocacy and awareness.
Should language services for deaf patients be a standard of care for deaf patients?
CH: The Americans with Disabilities Act (ADA) states health care systems and providers are required to ensure effective communication with patients through reasonable accommodations, but this wording is very ambiguous since it remains unclear what that actually means. Several articles highlighted the fact that many physicians often resort to inadequate modes of communication with their patients, such as lip-reading to communicate. Moreover, if interpreting services are provided, the quality of interpretation can be very variable, and it is difficult for providers without any ASL fluency to assess the quality of interpretation. In our opinion, communication accessibility should be viewed as a right. As providers, we need to ensure we understand what communication accessibility actually means for a deaf patient, and how we can create that.
How do you propose we reach patients that have low health literacy?
CH: This is a challenging question, and the reason for the literacy level of a patient is often complex and multifactorial. However, a study showed that even in deaf patients with post-secondary education the literacy levels were lower than expected. This raises the question on how much of this is due to the lack of accessible health care resources for information. For example, many informational videos online often lack captions and would not be accessible to the deaf patient [RTanswers.org proudly provides closed captions for all patient videos]. Creating resources that are inclusive of deaf patients may be one solution.
In your study, you mention that a couple medical schools have implemented programs. What is the role of the residency programs, medical schools and the ACGME? What would be your recommendations for short term actions that could be implemented quickly to help bridge the gap?
CH: Recognizing that culturally Deaf patients are also an underrepresented minority, rather than just a group of patients with a disability, may help spearhead efforts to recruit and train practitioners dedicated to serving this population. The creation of specialized training tracks in areas with a large deaf population could provide opportunities for further training. Promoting the development of educational initiatives that foster linguistic and cultural competency for deaf patients or similar groups could become a goal for the ACGME. Fortunately, our residency program recently presented a related topic at ASTRO, entitled “Establishing an American Sign Language (ASL) Inclusive Residency Training Program” as a starting guide for other residency programs that may be interested in creating inclusive programs.
What would you recommend for a health care practitioner reading this study as the next steps they can personally take to provide care for their deaf patients?
CH: We encourage practitioners to work on creating the ability to provide for ASL interpretation for all clinical encounters. When possible, in-person interpreting encounters should be favored over video remote interpretation. For those located in an area with close proximity to a large deaf community, directly engaging the community for advice on how to improve the quality of interpretation and general guidelines about accessibility may be very beneficial. Furthermore, hospitals often have a Patient and Family Advisory Council (PFAC) that can help provide such community advice for a hospital.
What are your next steps? Will you be pursuing further study?
CH: We are currently working on performing retrospective analysis to characterize the treatment outcomes for deaf patients with cancer compared to the general population. We also hope to eventually develop guidelines that help providers provide linguistic and culturally sensitive care to deaf patients.
More on commemorating Deaf History Month: March 13- April 15
Deaf History Month celebrates deaf history and, in particular, contributions made by the deaf community to American culture and society. Deaf History Month recognizes three major events for the deaf community:
- April 15, 1817, on which established the American School for the Deaf in Hartford, Connecticut, the first permanent school for persons who are deaf in the United States.
- April 8, 1864, when President Abraham Lincoln signed the charter for Gallaudet University in Washington, DC, the only university in the world designed to accommodate students who are deaf and hard of hearing.
- March 13, 1988, the date of the Deaf President Now (DPN) protest at Gallaudet University, which led to the appointment of the first ever deaf president of the university.