The International Registry on Organ Donation and Transplantation (IRODaT) has ranked Malaysia among the lowest for its deceased organ donation rate of a mere 0.9 donor per one million population.
Why is this so?
The Malaysian “opt-in” organ donation (OD) system requires voluntary pledging by an individual to be listed as part of the national registry. Even for a society that is so diverse and multicultural, the concept of ethical and consensual removal of organs and tissues from a donor for transplant into the recipient is not foreign or new in Malaysia.
Globally, various countries have adopted systems to suit their populace.
The Human Tissues Act 1974 clearly states that a transplant procedure can only be lawfully pursued if the donor authorizes the removal of specific body parts either in writing or verbally in the presence of two or more witnesses. The law includes “family veto” by the surviving spouse or next-of-kin wherein these individuals have the right to object and overrule the deceased’s wishes which then immediately terminates the donation process.
The “opt-out” system presumes all individuals as organ donors until objected by the living individual or even by family members of the deceased.
Adoption of the “opt-out” system in Spain a decade ago, resulted in an increase in organ donation rates. This was attributed mainly to the start up of a network of transplant coordinators across donor hospitals. They underwent professional training to improve communication, empathy, technical and administrative skills.
The increase in positive public perception towards organ donation in Spain was not only encouraged by skillful personnel with willingness to approach bereaved families, but also accessibility to worldwide and adequate healthcare resources.
However, in most countries, the “opt-in” or “presumed consent” approach is practiced .
The 2018 Annual Report by Malaysia’s Ministry of Health expressed interest in researching the possibilities of shifting from the “opt-in” to the “opt-out” system. With the many societal, economical, educational, spiritual and cultural factors to consider, it is important to see how such a shift could impact the number of actual organ donors.
To help address concerns such as religious issues, MOH has also worked in collaboration with the Department of Islamic Development Malaysia (JAKIM) to increase Muslims acceptance of organ donation.
Dr Farida Islahudin, an associate professor at the Faculty of Pharmacy, Universiti Kebangsaan Malaysia (UKM), expressed her thoughts on how to promote active education on OD.
Through the course of her research, she discovered that many individuals and communities lacked awareness and harbored a negative image of OD. It was important to emphasize the importance of developing culture-specific programmes to target communities with concerns.
Promoting and improving overall health literacy could also change the narrative of OD. Dr Farida stressed the importance of genuinely educating students without forceful and opinionated debates. Instead, it was important to have open discussions and conversations across different communities and social groups to objectively discuss the fundamentals, benefits and concerns regarding organ transplants.
Research published by Dr Farida and her colleagues in 2020 studied the willingness of Malaysians to donate their kidneys.
It found that the number of kidney donors varied across ethnic groups with Indians (72.7%), Chinese (61.8%) and other ethnic groups (33.3%) outweighing Malays (10.6%). Ethnicity appeared to be a significant factor affecting OD rates in Malaysia.
Other challenges identified which affected low OD rates include, but are not restricted to knowledge, attitude, beliefs, religion, culture and spirituality. Even with justification by religious leaders, individuals holding on to strong sociocultural beliefs and traditions were of the unfortunate opinion that organ donation mutilates the body.
“Attitude is very often linked to knowledge, which many try to improve through appropriate dissemination of knowledge,” said Dr Farida and her colleagues, emphasising on the need to improve understanding and support for organ donation.
Since organ transplants are clinical procedures conducted after organs fail or suffer damage as a result of conditions such as chronic kidney disease, the need to increase the number of donors is critical and should be addressed promptly.
With Malaysia facing a crisis of non-communicable diseases, there is also an increasingly large burden of need for more viable organs. More organs are needed, but there are few donors available. Nonetheless, this situation can be improved with more education, awareness and informed decision making. Multiculturalism should be an advantage rather than an obstacle to increasing organ donations.