My father is deaf. Born deaf, he is now 75 years old. He uses his voice, but he sounds strange to a hearing person when he speaks. He uses lip-reading techniques to communicate. A year ago, he was diagnosed with Hodgkin lymphoma. We did his oncology itinerary together. My father cannot go alone to medical appointments. Although he can physically, the parties would not understand each other.
I am a nurse with experience in community oncology care. Despite knowing the health-care system, I faced many barriers in obtaining accessible treatment for my deaf father. Up to this point, I could be describing the experience of many elderly patients, not only those with hearing disabilities. But at this point, the experience of an oncology patient with a hearing disability becomes much more challenging.
I am sharing my experience in the hope that oncology clinicians will better understand and address the needs of their patients with hearing disabilities. These issues are important in any health-care context but particularly so in oncology, given the prognostic implications of treatment decisions, the importance of clinical trials, and the need to balance quality-of-life considerations with the potential risks and benefits of treatment.
Throughout the course of diagnosing, caring for, and treating my father, the health-care workers spoke to me, not to my father—the patient—although he was right in front of them. Several spoke to me as if my father were my child or had a cognitive disability. They were even surprised when my father asked a lot of questions about his condition.
“Deafness increases the disparity in access to health care worldwide, which could be a factor in the poor prognosis for hearing-disabled patients with cancer.”— Carolina Tannenbaum-Baruchi, PhD. Photo by Yossi Aloni
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Initially, the clinicians did not consider him for a clinical trial because they did not give him a chance to discuss it with them. When the administrative manager of the clinical trial my father hoped to join arrived with many documents that my father needed to sign and found out that my father was deaf, she asked me, “Does he know how to read? To write? How is he going to sign the papers? We can’t admit him.” My deaf father is a very social person and addicted to website news. He certainly knows how to read and write. Finally, I was able to cosign his documents with him. For the first time, I signed my name with my title, Dr. My father was in the clinical trial.
Scope of the Problem
Most patients with hearing disabilities suffer from a lack of access to health care in a form that ensures they receive rapid diagnosis, correct and effective treatment, and medical treatment options they understand. This lack of access also affects their physical and psychological health.1-4 The World Health Organization estimates that roughly 466 million individuals live with significant hearing loss, either partial or complete.5 The minimal evidence that exists associating the timeliness of a cancer diagnosis, therapy, and consequences for people with disabilities suggests differential treatment and higher cancer-related mortality rates than for people without disabilities.6 Deafness increases the disparity in access to health care worldwide,7,8 which could be a factor in the poor prognosis for hearing-disabled patients with cancer.9
In recent years, personal communication with physicians has deteriorated. The use of surgical masks, particularly during the pandemic, has exacerbated the situation for people with hearing disabilities.8 Research conducted in 2018 among people with hearing disabilities showed that 67.4% of the participants used lip reading to communicate with hearing people, and 51% had independent communication with a familiar doctor, such as a general practitioner. In contrast, only 31% communicated independently with an unfamiliar doctor.1 Independent communication with a familiar doctor, in most cases not in sign language, is based on interpersonal relationships, using unique communication tools that develop over time and promote understanding between the parties.
To help health-care workers communicate better with these patients,2,10,11 we must provide these workers with the training and tools to do so. One option could be real-time translation with people with hearing disabilities and live group video-conferencing with them.12 In addition, health-care workers must remember that their patients with hearing disabilities, and specifically deaf patients, are the patients, even if they are accompanied by an interpreter or a family member.4,13 We must find out which form or forms of communication the patients prefer—lip reading, voice, writing, or a sign language interpreter—and check whether they understand what you say.14,15 We could also use apps for communications, interpreting, and writing and train staff about communication options with these patients.10,12,15
What Can We Do in the Meantime?
Cancer treatment should be tailored to the needs of patients. To do so, we must increase the representation of people with disabilities in scientific studies in oncology. This approach has had good results with underrepresented patients such as children, the elderly, and LGBTQ individuals.16-18 Accurate data and information from the patient’s point of view can help overcome the social and cultural prejudices that interfere with the treatment of oncology patients with disabilities.
“To help health-care workers communicate better with [hearing-impaired patients], we must provide these workers with the training and tools to do so.”— Carolina Tannenbaum-Baruchi, PhD
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In addition, several studies found that people with disabilities participated less in clinical trials than individuals without disabilities.19,20 We must give them the appropriate treatment for their disease and include them in clinical trials if they will benefit from them. It is our responsibility, as researchers and health-care workers, to care about the rights of these patients and make oncology treatment accessible for all patients.
Reflections From the Author
I am the eldest daughter of two deaf parents originally from Chile, and they live with me in Israel. I have conducted research with people who have hearing disabilities for more than 10 years in Israel. I was an oncology nurse in one of the largest health-care services in Israel. I think that the health-care workers, in this case, did not know the implications of being a deaf patient.
This personal narrative presents my observations about the differences in treatment that a deaf oncology patient and a nondeaf oncology patient receive. I am sharing my experience with the goal of making changes, not as a complaint. I hope I can promote the inclusion of hearing-disabled oncology patients, increase their access to treatment with varied tools for communication, and improve attitudes toward these patients.
DISCLOSURE: Dr. Tannenbaum-Baruchi reported no conflicts of interest.
REFERENCES
1. Tannenbaum-Baruchi C: A mixed-methods study of resources, barriers, and self-efficacy perceptions of persons with hearing disabilities during routine and emergency situations. Dissertation for a PhD. Ben-Gurion University of the Negev.
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5. World Health Organization: Deafness and hearing loss. February 27, 2023. Available at https://www.who.int/news-room/fact-sheets/detail/deafness-and-hearing-loss. Accessed June 19, 2023.
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12. Funes CJ, Mace RA, Macklin EA, et al: First report of quality of life in adults with neurofibromatosis 2 who are deafened or have significant hearing loss: Results of a live-video randomized control trial. J Neurooncol 143:505-513, 2019.
13. Tannenbaum-Baruchi C, Feder-Bubis P, Adini-Weisel B, et al: How deaf people cope in routine and emergency situations: Suggested paths for thought and action [in Hebrew]. Harefuah 153:532-536, 558, 2014.
14. McAleer M: Communicating effectively with deaf patients. Nurs Stand 20:51-54, 2006.
15. Tannenbaum-Baruchi C, Yizhak L, Levi D, et al: Perspectives of people with hearing disabilities on healthcare process accessibility in the Israeli health system. Body Knowledge 21:14-24, 2022.
16. Howell DL, Ward KC, Austin HD, et al: Access to pediatric cancer care by age, race, diagnosis, and outcomes of cancer treatment in pediatric and adolescent patients in the state of Georgia. J Clin Oncol 25:4610-4615, 2007.
17. Mohile SG, Dale W, Somerfield MR, et al: Practical assessment and management of vulnerabilities in older patients receiving chemotherapy: ASCO guideline for geriatric oncology. J Clin Oncol 36:2326-2347, 2018.
18. Schabath MB, Blackburn CA, Sutter ME, et al: National survey of oncologists at National Cancer Institute–designated comprehensive cancer centers: Attitudes, knowledge, and practice behaviors about LGBTQ patients with cancer. J Clin Oncol 37:547-558, 2019.
19. Plosky WD, Ne’eman A, Silverman BC, et al: Excluding people with disabilities from clinical research: Eligibility criteria lack clarity and justification. Health Aff (Millwood) 41:1423-1432, 2022.
20. Bierer BE, White SA, Meloney LG, et al: Achieving diversity, inclusion, and equity in clinical research: Guidance Document (version 1.2). Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard, 2021.
This article was originally published in JCO Oncology Practice and is republished here with permission. At that time, Dr. Tannenbaum-Baruchi worked at the School of Nursing Science, Academic College of Tel Aviv-Jaffa, Tel Aviv, Israel.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.
