SINGAPORE: Channel NewsAsia recently ran the story of Madam Tan Sock Lian, a mother who offered four of her son’s organs for donation when he died of a brain haemorrhage at 27.

The recipient of his heart – 30-year-old Tan Chwee Suan – lived for another 26 years following the transplant. When Mdm Tan saw how Chwee Suan cherished the new life she had been given, she told Channel NewsAsia that she had no regrets.

Despite stories like these, medical advances and one of the best healthcare systems globally, Singapore continues to face a severe organ shortage that prevents individuals with organ failure from receiving an organ transplant.

In 1987, the Human Organ Transplant Act (HOTA) was passed to address this scarcity. Through this legislation, and with its subsequent amendments, Singaporeans and permanent residents are automatically registered at age 21 to donate their kidneys, liver, heart and corneas upon death, unless they opt out with the Ministry of Health.

30 years since HOTA came into force, it is timely to review its successes and limitations.

TWO KEY FEATURES OF HOTA

In analysing its outcomes, two features of HOTA are noteworthy.

First, HOTA institutionalises reciprocity. If an individual who is registered as an organ donor is in need of one, he or she is given higher priority to receive an organ, while those who have chosen to opt out of the scheme may find themselves at the bottom of a long waiting list.

While it is a practice in fairness, one can also think of this as an insurance policy, where registered donors can take heart in knowing that they have better odds of receiving an organ should they need one.

The second important feature of HOTA is that it presumes consent: The default position is that of a willing donor, and individuals who disagree with this position must actively opt out.

This increases the pool of donors by ensuring that individuals do not miss out simply because of administrative reasons, such as forgetting to complete a donor registration card.

A default position also guides decision-making for those on the fence. If they choose to go with the default, this adds to the number of organ donors.

These features have made HOTA successful in expanding Singapore’s pool of donors. As of this year, the number of registered donors extends to 97 per cent of the resident population, with an average of 196 transplants performed a year through HOTA – up from a meagre five kidney transplants yearly in the period preceding it.

STILL CONTROVERSIAL AFTER 30 YEARS

Despite significant progress, the wait for an actual organ transplant remains long in Singapore.

On average, patients with organ failure wait nine to 10 years for a kidney, or one to two years for a liver or heart. This trails behind countries such as Croatia and Spain, where the median waiting time for a kidney is between one to two years.

One reason for this discrepancy may be controversy over HOTA’s presumed consent system. This assumes that all eligible donors who do not want to donate their organs know about HOTA and will opt out accordingly.

However, these assumptions may not be true, as seen from several highly-publicised cases where family members have opposed the donation of their deceased relative’s organs, claiming that the patient had not been aware of the law.

These families viewed the position of default consent as invalid and donation under HOTA amounting to a violation of their deceased relative’s will.

In some cases, families have removed life support before an assessment of brain death can be conducted, therefore circumventing HOTA altogether. 

Research suggests that although individuals may agree to donate their own organs, they are far more reluctant to donate a family member’s organs. Without knowing for sure where a deceased relative would have stood on the issue, families usually choose to act conservatively.

This highlights potential problems with the execution of HOTA, resulting in missed opportunities for patients awaiting organ transplantation.

In response to these concerns, some commentators and parliamentarians called last year for HOTA to be removed, rooting instead for a mandated consent policy that requires every Singaporean to declare in writing whether or not they would like to be an organ donor.

A mandated consent system would retain some benefits of an opt-out system since willing donors would register their intent, they said.

At the same time, they argued removing ambiguity about what a deceased patient wants could reduce family reluctance, potentially increasing the rate of conversion from donor registration to actual transplants.

THE FUTURE OF HOTA

Advancements in medical technology hold promise of a future with xenotransplantation and artificial organs. If these are developed, human organ donation will no longer be the primary solution for patients, and our current discussions would be irrelevant.

Until then, however, what does the future hold for HOTA?

It is clear that HOTA has not yet come of age. At the same time, it is unlikely that ridding it for a mandated consent scheme will be a silver bullet for the current organ shortage.

It is telling that at present, talks are in place for several mandated consent systems to be replaced with opt-out systems (such as in the state of Texas), whereas no domain is considering the reverse.

This highlights the very real possibility that when a default option is removed, the pool of registered organ donors could shrink.

Perhaps a middle ground can be sought, where HOTA’s opt-out system is maintained while requiring every resident to sign off during regular junctures that all Singaporeans go through, such as during one’s passport renewal exercise every five years.

Alternatively, opt-out forms can be made easily available to increase both Singaporeans’ knowledge of and ability to opt out if desired. These measures maximise the benefits of an opt-out scheme while promoting confidence in an individual’s registration on the donor list.

As we review HOTA’s outcomes, it is also important to dig deeper into the idea of organ donation. The act of signing one’s name to consent is not the end of its associated complexities.

One pertinent complication relates to our understanding of death. Most countries recognise two forms: Brain death and circulatory death.

While the heart stops in the latter, brain death is diagnosed when the heart is still pumping blood throughout the body. The diagnosis of brain death is a careful decision made after two highly trained specialists have ensured that all brain functions have ceased irreversibly.

This is the primary context under which organ transplants occur in Singapore, since vital organs quickly become unusable after the heart stops beating.

Although the medical world considers brain death to be final, many Asian cultures struggle with this definition. For them, as long as the heart is beating, organ removal under brain death may seem akin to euthanasia.

The complexities of policy, psychology and cultural beliefs make HOTA a policy that requires continual fine-tuning.

Moving forward, a more extensive package of solutions that targets not only the individual, but also families and society at large, can help to reduce the extent of Singapore’s organ shortage.

Dr Jean Liu is an assistant professor of psychology at Yale-NUS College, and an adjunct assistant professor at Duke-NUS Graduate Medical School.

SINGAPORE: Madam Sally Ng had just stepped out for a late lunch at about 3.30pm a few months ago when she got a harried phone call from an employee at her minimart in Serangoon.

The member of staff had just sold cigarettes to a student in uniform, and officers from the Health Sciences Authority (HSA) who were just outside entered the shop and revoked its tobacco licence.

“(My employee) said the boy had his bag in front and she couldn’t see that it was a school uniform,” said Madam Ng, 52, who insisted that she told the Malaysian employee countless times to check identity cards.

“Even when I’m not at the shop, I call her to remind her. I know how important it is,” she said. She has been running the shop for the past four years. 

The Health Sciences Authority recently suspended the tobacco licences of several shops and revoked the licence of one for selling cigarettes to those under the age of 18.

When Channel NewsAsia went to six of these shops to find out the circumstances surrounding their offences, a pattern appeared to emerge – the cashiers were either foreign or new, or both. They assessed the age of buyers – who they described as tall and big – just on their appearance, rather than asking to see ID cards.

The officers, typically two to four of them, stood outside in plain clothes, sometimes appearing like customers wanting to buy a product displayed outside. They entered the shops once the sale was made. Some of the shops said they found the buyers unfamiliar.

A spokesperson for HSA said the penalty for selling tobacco products to under-aged buyers is a maximum fine of S$5,000, and S$10,000 for subsequent offences. In addition, the tobacco retail licensee will also be suspended for the first offence and revoked for subsequent offences, she said. 

“If tobacco were sold to under-aged persons in school uniform or those below 12 years of age, the tobacco retail licence will be revoked, even at the first offence,” the spokesperson added.

RETAILERS SUFFER FROM DROP IN SALES

Mdm Ng, who owns the shop with her son-in-law, has been left counting the cost for her employee’s mistake.

Since her tobacco licence was revoked, she has experienced a 50 per cent drop in daily sales, from about S$4,000 to S$2,000. She decided to take over a neighbouring unit just to be able to sell cigarettes again.

Still, she is now struggling to make ends meet, with a total of S$6,000 in monthly rental, she said. 

Another seller in Yishun, Mr Cham Cher Kee, 59, had to let go of his employee after his tobacco licence was suspended. In his case, the offence took place when his son, who had gone to the shop tired after his tyre-making job, temporarily took over behind the counter.

Mr Cham said he checks identity cards without fail, and has encountered buyers who have become aggressive when asked for proof. He has been running the shop for 15 years, but said he will no longer sell cigarettes.

One shop owner in the Boon Lay area said that there are other visual clues to identify underage buyers, as they tend to be more tentative and nervous when trying to purchase cigarettes. When that happens, he said he asked for identification, even if they look like they are 18 or above.

In this case, the cashier at his shop, who was from India, did not check the identity card of the buyer, who he later found out was 20 days away from turning 18, he said. 

At another shop in Yishun, the circumstances were slightly differemt. Ms Cecilia Sim, 57, a part-time assistant at the shop, said that the underage buyer came with a regular buyer who was checked, and was older than 18. 

When they asked the underage buyer how old he was, he said 20, which they found believable because he was bigger than the other regular buyer. He turned out to be 16 years old. 

“We assumed. It’s our fault. We are in the wrong,” Ms Lim said. She said that the underage boy had his identity card checked by officers when he was a few shops down, before buying the cigarettes. The staff member who sold the cigarettes to him had restarted working after 30 years, and had only been on the job for two weeks, she said. 

Her shop has seen sales drop by more than half.

Regulars still come back for other things, but they keep asking when the cigarettes are coming back

When Channel NewsAsia went to the affected shops, several potential customers visited, but left without buying anything when they found out cigarettes were not available. 

HSA CONDUCTS REGULAR CHECKS ON TOBACCO RETAILERS

Regular checks on tobacco retailers are carried out based on intelligence, feedback from the public, and intelligence shared among partner agencies, the HSA spokesperson said.

She added that officers observe outlets suspected of selling tobacco to minors and take action if such offences occur. 

From January to September this year, HSA suspended 24 licences and revoked one, similar to the number that had action taken against them in the whole of 2016.

Recalcitrant underage smokers who are caught using, buying or having in their possession tobacco products face a fine of up to S$300, she added. They are also referred to the Health Promotion Board for smoking cessation intervention.

HSA urged all tobacco retail licensees to educate their employees on the law pertaining to the sale of tobacco products and for sellers to check the age of those who wish to buy tobacco products. 

Shop owners are advised to ask for photo identification from buyers who want to purchase tobacco as it is the most accurate way to ascertain the buyer’s age, the spokesperson said. 

She said: “Sellers take the risk of contravening the laws if they assess age by mere physical appearance of the buyers.”

The sellers who had their licences suspended said they will not sell cigarettes without checking identity cards, no matter the appearance of the buyers.

This is a lesson which a seller in the Boon Lay area said has been brought into focus: “We will surely check next time; we’ve already experienced losing the licence once.”