Keep on giving information

NOWADAYS, the word hero is synonymous with characters from the Marvel or DC cinematic universe. However, not all heroes don tight spandex outfits and knock out bad extraterrestrial beings by the hour. If you look around hard enough, you might find one next door.

One such hero is Carlton, a devoted father and educator from Texas, the United States, who, several days shy of his 93rd birthday, suffered from a brain haemorrhage and passed away. His family decided to donate his liver, giving a 69-year-old woman suffering from end-stage liver disease a new lease of life.

There is no age limit in organ donation, and there is no discrimination between gender, race and religion. That’s how it should be.

Most of us are not aware of the full list of organs that can be donated besides hearts, kidneys, lungs and livers. We can also donate tissues such as corneas, skin, bones and heart valves.

There are two types of donors – living and cadaveric donors. Living donors are restricted to donating one of their kidneys, part of their liver and bone marrow. Cadaveric donors are deceased (brain dead or clinically dead). Cadaveric donations are encouraged and prioritised in Malaysia.

Organ donation is often spoken of highly but how many of us have actually made the pledge to donate our own? In August 2018, Malaysia’s cadaveric organ donation rate was between 0.4 and 0.6 per million population (pmp). This figure pales in comparison with countries such as Turkey, South Korea and Spain with rates of 7pmp, 9.95pmp and 46.7pmp respectively.

Why do we have so few organ donors? Is it because we are worried that our bodies would be treated dishonourably? Or is it because we’re not sure how our religion views this matter?

A survey titled “Low Organ Donation Rate in Malaysia: A Survey” involving 1,311 respondents to investigate the factors that contribute to the low number of organ donations in Malaysia found that, surprisingly, religious and cultural factors are not the main issues preventing people from donating their organs.

The result of the survey, which was published in 2014, showed that the majority of the participants gave lack of information as the main reason to not become donors.

Another paper, “Organ Donation in Muslim Countries: The Case of Malaysia”, from 2013 also found that lack of information was the main reason Malay Muslims are reluctant to become donors.

A 2010 paper, “Differences in Attitude towards Cadaveric Organ Donation: Observations in A Multiracial Malaysian Society”, reported that several reasons for reluctance to donate included fear of organs being used for research, a desire to be buried whole, and fear of less effective treatment if the patient is known to be a donor. The study also found that only a small number of Muslims were aware of the fatwa supporting organ donation.

Providing information is the key to rectifying the current state of affairs on organ donation in Malaysia.

The National Transplant Resource Centre was established by the Health Ministry to disseminate correct information and raise awareness on organ donation and transplantation among Malaysians. Its official website dermaorgan. gov.my is currently not accessible but information (in Bahasa Malaysia) on organ donation is available on the Health Ministry’s MyHealth portal (http://www.myhealth.gov. my/derma-organ/)

I believe education is the primary way to significantly increase the number of donors although some are arguing that changing the current opt-in system to an opt-out system would be a better option.

Our current system (opt-in) requires citizens to register to be organ donors. In the opt-out system, everyone is registered as organ donors unless he or she has requested to be excluded from the list.

In 2009, a systematic review was conducted on the impact of presumed consent for organ donation on donation rates (https://www. bmj.com/content/338/bmj.a3162. full). The researchers concluded that presumed consent might not be the sole reason for the hike in numbers although it was found to be associated with increased organ donation rates.

Naturally, in-depth research must be done before we can implement such a system in our country, and this has to involve education as well. As Aristotle once said: “The roots of education are bitter, but the fruit is sweet.”

In Malaysia now, even if you have pledged to be a cadaveric donor, your family has the final say in whether or not your organs are donated. Perhaps we should move to a system where we honour the wishes of the deceased even if the family disagrees.

Both the authorities and the rakyat need to band together and work towards resolving this problem. Thousands on the transplant waiting list are hoping for a miracle. Let us be their miracle!