Inclusive healthcare: Sign language interpretation for deaf Malaysians

The healthcare system has a long way to go in addressing the communication barriers deaf people face

TO DATE, there are approximately 40,000 registered deaf and hard-of-hearing individuals in Malaysia. While not all, a large majority of deaf people use Malaysian Sign Language to communicate. However, none of them have guaranteed access to effective communication methods, such as Malaysian Sign Language (BIM) interpretation, during healthcare consultations.

Ideally, health communication should be conducted in a patient’s primary language. This privilege is, however, often not extended to deaf patients given that BIM is a minority language in this country. Research has shown how communication barriers not only hinder healthcare access for deaf individuals, but also contribute to poorer health outcomes and mistrust within the healthcare system.

There is also a severe shortage of BIM interpreters and healthcare professionals fluent in BIM to serve the deaf community at large. To quantify this problem, consider this: For every 800 deaf individuals, there is only one qualified BIM interpreter available.

As a result, healthcare professionals resort to less-than-ideal communication methods such as note-writing, hand gestures, informal interpreters such as friends and family, and lip-reading. However, these methods, while purposeful in obtaining the patient’s medical history, bear inherent risks of miscommunication and potential misdiagnosis which could have profound implications for the deaf patients’ lives. Moreover, healthcare professionals lack the cultural and linguistic competence necessary to meet the unique needs of deaf patients, which then often excludes deaf people from participating in their medical decision-making processes. The fear of medical misunderstandings has caused many deaf patients to delay routine medical care even when it is urgently needed. Due to such inequities, deaf people are known to have increased risk of cardiovascular diseases and psychological disorders.

A poignant example of this was when a deaf patient in the Klang Valley struggled to grasp her high cholesterol diagnosis and the importance of taking the medications due to communication barriers with her doctor. Despite the doctor’s efforts to explain the diagnosis through pictures from the Internet, the explanation remained complicated.

It was easier for her to understand the illness from another deaf friend, who convinced her that Western medication was not good for her. As a result, she stopped taking her cholesterol medication without consulting her doctor and tragically, she suffered a very severe stroke after two years.

This incident is not an isolated case as many other deaf people continue to face similar communication barriers impacting their quality of care.

While healthcare professionals in other countries like the UK and the US have the legal and ethical obligation to provide sign language interpreters during medical consultations for their deaf patients who rely on their national sign language, this has yet to be realised in Malaysia. The Malaysian Persons with Disabilities Act 2008 recognises that persons with disabilities shall have equal rights to persons without disabilities in healthcare access and that other parties are required to take appropriate measures to ensure this access.

This Act, however, falls short in addressing the nuanced challenges faced by specific groups with disabilities, including deaf people, and thus fails to level the playing field. For example, the Act lacks explicit legislation pertaining to reasonable accommodations in the form of aids or BIM interpretation services to effective health communication. By providing BIM interpretation services in healthcare settings, deaf people would be able to take an active role in their healthcare and gain a deeper understanding about their treatment plans, thereby improving medication adherence and maintenance of their health. Through improved communication, trust and rapport between deaf patients and healthcare providers can be built. This will positively influence future follow-up visits and receptiveness to medical recommendations from healthcare professionals, which will have positive effects on their well-being and in the long term, save Ministry of Health (MoH) resources.

Deaf people could engage with civil societies, which provide their BIM interpretation services at a cost. Unfortunately, many deaf individuals are unable to afford these additional fees on top of the costs of medical consultations and medications, which often lead interpreters to provide pro-bono services, creating an unsustainable workforce.

Even if cost was not a factor, deaf people would still need to make a booking at least one week in advance, due to the limited number of qualified BIM interpreters. This raises the question: How do deaf people communicate effectively in a medical emergency when time-sensitive questions are asked?

When adequate investments are made into BIM interpretation services in healthcare settings, BIM interpreters will be fairly remunerated for their services which inadvertently, increases the career prospects within this workforce. deaf people will also more likely experience lesser medication errors, lesser hospital readmissions and improved patient satisfaction, all of which lead to cost savings for healthcare operations.

Sept 23 represents International Day of Sign Languages, which recognises sign language as equal status to any other spoken language and its importance in realising the rights of deaf people. deaf people are just as entitled to equal opportunities in healthcare access as compared to hearing people. It is undeniable that the healthcare system is still a work in progress and has a long way to go in addressing the communication barriers deaf people face. Although a large feat, it requires careful collaboration between grassroots organisations, academia and most importantly, various Ministries such as the MoH and Ministry of Women, Family and Community Development to revise the policies and consider the implementation of BIM interpretation services in healthcare settings.

For many, it’s hard to imagine what life would be like as a deaf person as we live in a world built for the hearing.

Elizabeth Chong, Anthony Chong and Prof Uma Devi Palanisamy are members of the Jeffrey Cheah School of Medicine and Health Sciences at Monash University Malaysia.