Tanvi Ravindra Thombre, 24

School: Singapore University of Technology and Design

Topic: Increasing discussion on organ donation

Award: Special Mention, Open Category, 2022

Organ Donation – Fit for Dinner Conversation?

The first successful organ transplant took place in 1954, marking a milestone in medical history. Today, 20 Americans die each day waiting for an organ, with another name added to the national waiting list every ten minutes. The global organ shortage has prompted many countries to adopt opt-out protocols. Since 1987, 21-year-old Singapore Citizens and Permanent Residents who do not opt-out of the Human Organ Transplant Act (HOTA) can have their kidneys, heart, liver, and corneas removed for donation upon death given no family objection.

Even though it is a shared experience, there is limited discussion surrounding the decision, its implications, and its processes. There may be a reason for this, namely that the discussion of death is taboo, especially in Asian households, where it is believed that even mentioning it could bring misfortune. Religious rules could also affect the discourse within religious households in cases where there is a conflict between practical and religious concerns. In a multicultural country like Singapore, taboos, superstitions, and religious laws must be handled sensitively.

A survey by the United Kingdom National Health Service found that the top 5 reasons organ donation was not being discussed were – never coming up in conversation (36%), not wanting to talk about death (21%), not getting around to it yet (17%), not wanting to talk about this personal choice (14%) and not seeing the need to (12%). By addressing these causes systematically, more conversations about organ donation may be sparked. And as significant as facts are, people and their stories need to lead the conversation about organ donation.

Importance of discussing organ donation

Discussions about organ donation are imperative as they have a significant impact on the rate of donations. During the sensitive time following a death, pre-donation discussions help families consent to a loved one’s donation. Secondly, discussions about the donation process dispel misconceptions that influence donors and consenters alike. Finally, organ donation can be recognized as a national effort by discussing the post-donation process.

In most countries, the family of a deceased donor must approve the donation, which explains the variance in donation rates, even between countries that have an opt-out protocol. A low 13% family refusal rate in Spain, versus 37% in England, explains how Spain has the highest deceased organ recovery rate. Grieving family members are not in a position to have their deceased loved one’s decision to donate organs thrust upon them by hospital transplant coordinators, and the lack of any prior discussion could make them question whether this was the true wish of their departed dear one. Early discussions can prepare them to accept the decision of their loved one and focus on feeling proud of their loved one’s contribution to saving lives.

People’s decision to donate will be swayed by misconceptions if donation is not openly discussed. Online forums are rife with claims without an expert to correct them. “If I am a registered organ donor, the doctors will not try as hard to save me from death” – apart from being illegal, it is difficult to fathom why a doctor would risk a life for a slim chance of saving someone else if it is a match. “My family member could come back from being braindead, so they could be killed in the process of donation” – knowledge about braindead irreversibility could allay such fears. “If I am a living donor, I will have health complications in the future” – many do not realise that it is a hospital’s duty to ensure that the donor is healthy long-term, which entails annual health check-ups. “Being a living donor is extremely painful and I will have to pay medical bills and take a long leave” – kidney donors report feeling soreness and being discharged within 4 days. A study has found that there is a significant correlation between knowledge and the willingness to donate and consent.

Besides dispelling misconceptions, a societal discussion about the process after donation fosters a sense of national pride and emphasizes the importance of every donation. Many people are unaware that rejection rates are still high, and it takes multiple people to find a compatible match - thus the value of each donation is clearer. Considering programs like the Silent Mentors Programme in Singapore, which uses donated cadavers to train medical students in surgery to improve the health outcomes of so many living patients, and the Medical (Therapy, Education and Research) Act (MTERA) further demonstrate the value of organ donation in furthering disease, cancer and other research. The discussion encourages more people to join the team and builds trust in the nation’s donation and transplant system.

Ways to reframe and begin the discourse on the individual and community level

Understanding why discussions are not being had and why they are relevant informs the ways in which discussions can be sparked on an individual and societal level.

Considering most people won’t bring organ donation up in conversation, the point of decision-making should facilitate meaningful discussions with family members before donation. Singaporeans receive a letter upon turning 21 to inform them of their acceptance to donate organs. In the United States, where opt-in rules apply, the decision is made every 10 years when renewing licenses or IDs. In addition to being administrative contact points, these decision points should serve a broader purpose. Using pamphlets to share the fears and pride of families whose loved ones donated, families can begin the conversation in their own homes, rather than making it an individual decision.

The fear of death is also cited as a common reason for not talking about organ donation on an individual level, so organ donation can be reframed from something that occurs after death into an opportunity to save lives. The Happy Urns initiative in Singapore aims to start a conversation about mortality using urn design to reflect on how one would represent their life, and a Life In A Year journal to pass on stories to their loved ones. Likewise, it is important to steer the discussion away from purely process after death and encourage reflection on why one wants to become a donor. Pamphlets can share the motivations of those who have donated or their families, such as “she wanted to give back to the medical profession that had kept her alive for so many years” or “if I have the means, why not help?”. In behavioural science, tapping into an individual’s identity encourages action. Rather than just being a duty, the letter should redefine organ donation as a way to become a hero for ordinary citizens.

Additionally, societal efforts to correct misconceptions are needed because knowledge significantly increases the likelihood of donations and consent. To raise awareness and get people talking about how science can be fun, Canada’s Science World Museum created a series of clever fun-fact billboards. A “Did You Know”-campaign, with facts such as “Did you know one person’s donations can save up to eight lives?” or “Did you know living donors receive free annual health checks?”, can shed light on the unseen yet amazing journey from donation to transplant and build trust in the nation’s healthcare system. A hotline number could even be included on the billboards for those who have specific concerns, such as health risks of donating in light of their own medical history or religious implications upon receiving the body back, and want an expert’s opinion.

Finally, even though many countries do send families of donors updates on the impact of their loved one’s donation - NOTU in Singapore provides non-identifiable demographics of the recipients to the donor’s next-of-kin - these anonymous recipient stories could be shared more widely. An organ transplant is one of the rare medical procedures that would not be possible without the generosity and sacrifice of another. The Singapore Strait Times named an organ donor as the Singaporean of the Year in 2021, giving him a tremendous platform to influence others. By sharing their stories, living organ donors and families of deceased donors can inspire a ripple wave effect of awareness and appreciation for organ donation. Donors often tell stories about how they gained a family as a result of their experience. Medical students say that it was a privilege to practice procedures on donated cadavers. The family of a deceased donor recounts the pride they felt when they learned that their loved one saved four lives. A forum or book of such stories can be a valuable resource for anyone involved in the process, whether as donors, recipients, families, or students.

Conclusion

Organ donation rates can be significantly increased by facilitating early discussions about donation, dispelling misconceptions about donation through compelling campaigns, and highlighting the wonderful benefits of donation through real stories. The brave stories of every individual involved in this noble and heroic act may be a source of pride for our nation if they are discussed candidly on an individual and societal basis.

References

1. WebMD: Organ Donation and Transplant. Available at https://www.webmd.com/a-to-z-guides/organ-transplant-donor-information

2. The Harvard Gazette: A transplant makes history. Available at https://news.harvard.edu/gazette/story/2011/09/a-transplant-makes-history/

3. Reddit: TIL that everyone in Singapore above the age of 21 is automatically registered as an organ donor. Opting out from this Act will result in you being put at the very bottom of the organ priority list, should you need an organ transplantation. Available at https://www.reddit.com/r/todayilearned/comments/hs7fv2/til_that_everyone_in_singapore_above_the_age_of/

4. Frontiers in Public Health: A Multiethnic Asian Perspective of Presumed Consent for Organ Donation: A Population-Based Perception Study. Available at https://www.frontiersin.org/articles/10.3389/fpubh.2021.712584/full

5. The Wire: Why Does Spain Lead the World in Organ Donation? Available at https://thewire.in/health/why-does-spain-lead-the-world-in-organ-donation

6. Youtube: Giving their bodies to science | The Straits Times. Available at https://www.youtube.com/watch?v=S7kfbKiHRTU

7. NHS: Families need to talk about organ donation, to give thousands waiting the chance of a ‘new beginning’. Available at https://www.organdonation.nhs.uk/get-involved/news/families-need-to-talk-about-organ-donation/

8. Boredpanda: Clever Ads Show That Science Can be Fun. Available at https://www.boredpanda.com/science-world-ads-we-can-explain/?utm_source=reddit&utm_medium=referral&utm_campaign=organic

Disclaimer: Please note that the views and opinions expressed in the essays for the Live On Festival 2022 are those of the participants and are not endorsed by the National Organ Transplant Unit (Ministry of Health). To learn more about organ donation and organ transplantation in Singapore, please visit www.liveon.gov.sg