MySejahtera Omits Explicit Consent From Pledged Organ Donors

Besides lacking the pledged organ donor’s explicit consent, digital signature, and info on which body parts or whether all organs & tissues are consented to for donation, MySejahtera’s organ donation pledge card can’t be viewed on a phone’s locked screen.

KUALA LUMPUR, Sept 19 – The organ donation pledge card on the MySejahtera app does not contain the pledger’s digital signature indicating consent or list the body parts that the pledger consents to donate – potentially strengthening objections from a deceased pledger’s family to organ donation.

This is unlike the printed card issued by the National Transplant Resource Centre that shows the pledged organ donor’s signature, date of signature, and which body parts are consented to donation – all organs and tissues; or kidney, cornea, heart, bone, liver, skin, or lung.

The app’s questionnaire for one to pledge organ donation on the MySejahtera mobile application does not ask for the pledger’s name, identity card (IC) number, consent to organ donation, or which organs or tissues that one wishes to donate.

Instead, MySejahtera simply requests details on the pledger’s one next-of-kin, like name, IC number, and phone number, and whether that person has been informed of one’s decision to become an organ pledger.

One’s name and IC number – stated as “ID number” – on MySejahtera’s digital organ donation pledge card are generated from the app user’s previously registered name and IC number.

The MySejahtera organ donation pledge card is also inaccessible on a phone’s locked screen, prohibiting other people from viewing it if they do not have the phone’s passcode in the event of the pledged organ donor’s death.

One’s medical ID on Apple’s iPhone and Android phones, on the other hand, shows on a locked screen by tapping Emergency, then Medical ID, which includes details on whether the phone user is an organ donor, besides blood type, and allergies and reactions.

Unlike the physical organ donation card that lists a toll-free number for the next-of-kin to contact in the event of the pledger’s death, the digital MySejahtera version – if it can even be accessed by the pledger’s surviving family – does not contain any contact numbers.

Although MySejahtera claims that a notification will be sent to one’s next-of-kin on one’s decision to become an organ donor, no SMS or MySejahtera notification has been received by the next-of-kin listed by CodeBlue editor-in-chief Boo Su-Lyn at the time of writing, four days after her registration on the app last September 15.

The National Transplant Resource Centre’s Derma Organ website does not contain an online form for people to pledge organ donation, showing instead a graphic on steps to pledge as an organ donor through MySejahtera.

No steps are provided on how people without mobile phones or who do not use MySejahtera can register as organ donors.

Before the MySejahtera organ donation pledge feature was rolled out, even with expressed consent from pledgers’ printed cards, Malaysia’s organ donation rates have been very low, mainly due to opposition from the deceased pledger’s next-of-kin, according to health experts.

Health Minister Khairy Jamaluddin recently said Malaysia was among 10 countries with the lowest organ transplant rates in the world in 2021, at 2.84 transplant procedures performed per one million population, citing the Global Observatory on Donation and Transplantation.

Galen Centre for Health and Social Policy chief executive Azrul Mohd Khalib – who co-hosted an interview with BFM producer Tee Shiao Eek and two doctors on organ donation in a podcast published last September 14 – pointed out that Malaysia is ranked by the International Registry in Organ Donation and Transplantation as having among the lowest organ donor rates in the world at 0.9 donors per one million population.

Azrul also noted that most organ donations performed in Malaysia are from living donors, with only 20 to 40 kidney transplants annually involving deceased donors, based on statistics from the Malaysian Kidney Allocation System. The ratio of cadaveric organ donations versus organ donations from living donors in Malaysia is one to three.

Respect Individual Rights And Consent To Organ Donation

Azrul told BFM that he noticed a number of “startling” issues with MySejahtera’s organ donation feature, particularly the app’s failure to ask for the pledger’s consent to organ donation in its questionnaire.

“It asks the next-of-kin, contact details, but your own consent is not asked, which is very strange,” he said.

“I’m looking at the 2009 version of the organ donor card, the physical card, the green card, it states clearly – you consent, and also what you consent to donate.

“In the MySejahtera app, there is no such option. So essentially, in that option in MySejahtera, the application asks for everybody else’s agreement except for your own, which is quite ironic.

“It’s a stark comparison to where we see, in other countries, the right of the individual is very important to respect, in terms of the wishes to become an organ donor.”

Consultant nephrologist Dr Sunita Bavanandan said that before going on the BFM show, she had posed the same questions as Azrul about MySejahtera to administrators of the Derma Organ site run by the National Transplant Resource Centre that is based in Kuala Lumpur Hospital under the Ministry of Health (MOH).

“Looking at the MySejahtera app, it’s not very much information there, so how will we know? They told me apparently, there will be plans to link the MySejahtera app to the National Transplant Resource Centre, which is where they issue the organ donor cards,” Dr Sunita told BFM.

“Perhaps then they will ask and get information on which tissues and organs you agree to [donate].”

Khairy’s office did not yet respond to CodeBlue’s questions about MySejahtera’s organ donation pledge feature at the time of writing.

Family Veto On Organ Donation, Doctors Are Not ‘Organ Snatchers’

On the BFM show, Azrul noted that according to Section 2(1) of the Human Tissues Act 1974, which regulates organ donation, a transplant procedure can only be lawfully pursued if a person authorises the use of his or her body, or specific body parts, after death for therapeutic, medical education or research purposes, either in writing or verbally in the presence of two or more witnesses.

“But the law also indicates there’s a family veto by the surviving spouse or next-of-kin, where these individuals have the right to object and overrule the deceased’s wishes, which then immediately terminates the donation process,” he said.

“So we have that situation, which is in effect affecting the way the donation process is ongoing in Malaysia.”

Dr Sunita said a typical scenario she sees is family members divided in opinion about donating the organs of their deceased loved ones.

“Perhaps younger members are more inclined to agree to the donation, but you’ll get an older family member who steps in at the last minute and says no,” she told BFM.

She stressed on public education to improve people’s understanding about brain death and their trust in the medical system.

“Some people are worried that if they become an organ pledger, if they were to end up in ICU (intensive care unit), perhaps people might not go all out to save them. There’s a fear people will declare them dead when they’re not really dead,” Dr Sunita said.

“So this is why people have to understand — to declare someone brain dead, we have to go through very strict criteria. The process is done by senior doctors, at least two of them, and both have nothing to do with transplantation.

“These two senior doctors do the test, and they have to repeat the test, at least six hours apart, before we can declare anybody brain dead.”

Consultant urologist Dr Vijayan Manogran, who was also on the BFM show, quipped: “We’re not organ snatchers.”

A man, who commented on MOH’s September 15 Facebook post about MySejahtera’s organ donation pledge feature, said he has registered and informed his wife about his decision to become an organ donor.

“She’s reluctant and said that she will have the ultimate say when I die… I told her I will haunt her if she goes against my wishes.. She says, come la,” he posted.

Increase Public Awareness For Older People Beyond A Digital App

While Dr Sunita and Dr Vijayan welcomed the MySejahtera feature, both doctors called for more public education initiatives beyond merely relying on a mobile application to raise awareness about organ donation.

“Things like these apps only probably reach a limited audience,” Dr Sunita told BFM.

“This education of the public needs to take other channels as well. Perhaps for the older population – radio, using other forms of media, newspapers etc – would be useful, and TV as well. And perhaps roadshows to be done so that we can actually reach a much wider range of target audience.”

Dr Vijayan told BFM that MOH needs to correct the weaknesses in MySejahtera, as highlighted by Azrul, which can then be used as the first platform to get people to start thinking about organ donation.

Other media should also be used, Dr Vijayan said, suggesting public service announcements in both radio and cinema.

“You can utilise the five minutes before the movie starts, have a short thing on organ transplantation. That’s one area where you can get the attention of people,” Dr Vijayan said, pointing out that cinema operators could provide these public service announcements on a corporate social responsibility (CSR) basis.

Khairy recently tweeted that 4,500 organ donation pledges have been made on MySejahtera as of last September 12, but did not indicate how many of these are existing pledgers who previously registered and received their physical organ donation cards.

Azrul said targeting younger people, who are more agreeable and likely to be supportive of organ donation, doesn’t address the probably higher resistance among older people towards donating the organs of their deceased loved ones.

“Perhaps we need to increase the level of engagement and outreach with this group of people as well,” he told BFM.

“That goes back to the heart of the issue, which I think MySejahtera is trying to deal with as well – which is that if you’re an organ donor, make sure everybody around you and your own family knows that you’re an organ donor so that if anything happens, they can respect your wishes at that last final moment. That you can contribute and help save other people’s lives as well.

“That, perhaps, is something we don’t do enough and I just want to put it on record here, I’m an organ donor. If anything happens to me, everything must go.”

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