The Ministry of Health stated in December 2017 that there were 21,778 patients on the waiting list for organ transplants. 99.9% of these patients (21,759 individuals) require kidney transplants, while the remaining 0.1% (19 individuals) require other organs such as liver, heart and lungs.
It is clear that there is a large demand for organ transplants (in particular kidneys), but only few who registered to be organ donors.
Organ transplants are indispensible to many patients, especially those who suffer from organ failure. It can save lives and improve the independence and productivity of patients and families.
Yet, the number of organs available for transplant (via organ donations) remains low throughout the years. The Global Observatory on Donation and Transplantation recorded an average of 18 deceased organ donations in Malaysia per year between 2012 and 2016. The then Health Minister Datuk Seri Dr. S. Subramaniam also disclosed that only 1.3% of the Malaysian population (419,946 individuals) registered to donate their organs after death by 2018.
It is clear that there is an urgent need to increase the number of organ donors to sufficiently accommodate patient needs. A potential solution that could increase the rate of organ donations in our country is through the introduction of an opt-out consent system.
Malaysia currently adopts a soft ‘opt-in’ system to organ donations. This means that explicit consent from the organ donors or next-of-kin must be obtained before a deceased person’s organs could be removed. Donors must register their choice to become an organ donor, and those who do not register are presumed to be a non-donor.
An ‘opt-out’ system, in contrast, automatically presumes that a person consents to donating their organs unless they explicitly register their choice not to donate. Opt-out systems are designed to increase donations by tipping the balance of consent in favour of donation, by making donation as the default option as opposed to being the exception.
According to the World Health Organisation, countries with opt-out systems display 25% – 30% higher organ donation rates than countries with opt-in systems.
Out of the Top 10 countries with highest rates of organ donation in 2016, 8 out of 10 have opt-out systems in place. Therefore, adopting an opt-out system could set the stage to increase donor rates by expanding the available pool of donors.
It must however be understood that adopting an opt-out system alone is insufficient to produce significant increase in organ donations. It is merely one of several factors that influence the rate of organ donation. A number measures needs to be introduced alongside an opt-out system to produce the desired but significant increase in organ donation rates.
There are countries where the introduction of an opt-out system alongside effective reforms led to a rapid increase in organ donation rates, such as Spain and Austria. Examples of effective measures include establishing a central body and registry for organ donations, increasing publicity of organ donor registries, improving hospital infrastructure, improving coordination of organ donations and transplants in hospitals and including organ donation options in government registration processes (such as applying for an IC or passport).
In Malaysia, next-of-kin are informed and consulted before an act of organ removal commences, also known as the soft approach. The alternative would be a ‘hard’ approach, whereby next-of-kin are not consulted. A hard approach could create a climate whereby the wishes and ownership of the deceased to their own bodies are absolute and respected.
For example, the deceased may consent to donate their organs against the wishes of their next-of-kin. By using the hard approach, the registered choice of the deceased triumphs over the choice of the next-of-kin.
A hard approach could ensure that the rights and decisions of an individual to their own body is not compromised through the decisions of others.
However, consulting next-of-kin before organ removal can be beneficial. Consulting next-of-kin respects that a next-of-kin may wish to be part of decisions surrounding a loved one’s death. They could also address uncertainties in a person’s registered choice, such as informing clinicians on later decision changes not reflected in the registry, clinical history of the deceased and counter potential mistakes or administrative errors (such as when systems fail to record a deceased person’s decision to opt-out).
Consequences of making decisions without consulting next-of-kin could be problematic in a society that values family.
In Brazil, a hard opt-out approach was opposed to and eventually repealed due to accusations of body snatching, leading to significant mistrust towards organ donation, the government and decline in organ donation rates.
There are also concerns that an opt-out system could undermine the principles of organ donation as a conscious, charitable act of gifting. This strips the meaningful and noble element of a ‘donation’, which may be problematic in the context of existing communications on organ donations in Malaysia, which emphasises organ donation as an act of helping and charity.
This element of helping could be taken away through the adoption of an opt-out system. At best, this could lead to feelings of dissatisfactions or apathy amongst the public towards organ donation and a decline in donation rate.
At worst, it could start an anti-organ donation movement, especially amongst those who are already sceptical of organ donations and transplants.
Despite the risks, adopting an opt-out system could be a solution to the long-term problem of organ shortage in Malaysia. Due to the nuanced nature surrounding organ donation consent, it is important that extensive deliberation, consultation, dialogue and research is conducted across all relevant parties to ensure the best decision is made.
By increasing the organ donation rate in our country, we are ensuring the right of all Malaysians to health, wellbeing and autonomy.
Jade See is a Research Officer with the Galen Centre for Health & Social Policy.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.