'Are you sure he is dead?': Doctors struggle with families’ lack of understanding of HOTA

SINGAPORE: While the pool of potential organ donors has increased since the Human Organ Transplant Act (HOTA) was enacted more than 30 years ago, the overall organ transplant rate is still low, with more than 400 people waiting for organ transplants as at the end of last year, according to figures from the Ministry of Health.

Under HOTA, all Singaporeans and Permanent Residents aged 21 and above are deemed donors, unless they chose to opt out. It allows for their heart, kidneys, liver and corneas to be harvested for transplantation when they are declared brain-dead.

But there are challenges when putting the legislation into practice, doctors told CNA.

One major hurdle they face is the objection from family members.

“The family is still very much involved in a patient’s medical decision, and more so when the patient can no longer make his or her own views known,” said Dr Lee Guan Huei, medical director of liver transplantation at the National University Centre for Organ Transplantation.

They either cannot come to terms with the death of the family member or doubt that their family member is really brain dead, added Dr Lee, who is also a senior consultant.

“Examples of what we have heard are ‘Are you sure he is dead? See, he is still breathing (supported by ventilator)’, ‘Can we wait another day? I heard there are miracles that happen sometimes’, he said.

Sometimes, family members question if doctors had done all they could to save their loved one, said Associate Professor Prema Raj Jeyaraj, Director of the recently launched SingHealth Duke-NUS Disease Centre for Transplant.

FAMILIES DO NOT KNOW WHAT THEIR RELATIVES WANT AFTER DEATH

Even when families have come to terms with the death of their loved one, doctors face another hurdle – doubt over consent to HOTA.

“They do not want organ donation and cannot accept the presumed consent provided under HOTA and feel that their loved one would not have wanted to,” said Dr Wong Yu Lin, Director of the neurosurgical Intensive Care Unit at Tan Tock Seng Hospital.

This discord arises when patients do not discuss it with their loved ones due to its “taboo” nature, said Dr Will Loh, Consultant in the surgical Intensive Care Unit at the National University Hospital.

“They quite understandably express surprise and object to organ donation as they do not know the wishes of the deceased”, he said.

READ: 'When I saw this innocent baby facing death, I knew I had to do something': Stranger who donated liver to 6-month-old baby

Objections could also come about for cultural or religious reasons, said Dr Loh.

DELAYS COULD MAKE POTENTIAL ORGAN DONOR UNSUITABLE

While doctors acknowledge that it is usually a difficult and stressful time for grieving families, and necessary counselling and emotional support are needed, they are racing against the clock.

Delays because of objections and challenges put up by family members could make the organ less viable for transplant, doctors say.

Dr Desmond Wai, a hepatologist in private practice, said that families may ask for a second opinion, which may take up precious time, as there is only a 24 to 48-hour window before the organs become unviable.

READ: When it's life or death: Family members donate livers to relatives despite risks

According to figures from MOH, 504 deceased donor organ transplants were carried out last year, 88 per cent of which were cornea transplants. There were six heart transplants, 19 liver transplants and 38 kidney transplants. This represented a 13 per cent drop from the 581 deceased donor organ transplants carried out in 2017. 

Singapore had a deceased organ donation rate of 6.6 organ donors per million population (pmp) in 2017, a slight increase from the close to 5 organ donors pmp a decade ago.

This is low in comparison to Spain's 46.9 pmp in 2017, the highest in the world.

IMPROVING THE ORGAN DONATION SITUATION

In response to queries on HOTA’s effectiveness, MOH said that while more patients have benefited from organ transplants, there is still room to "further improve" the organ transplant rate in Singapore.

The ministry will continue to reach out to and encourage Singaporeans to support organ donation, a spokesperson said, adding that there have been dedicated public awareness efforts to educate the public on the life-saving benefits of organ donation and to “facilitate shifts in societal attitudes and views towards organ donation”.

MOH has also been training more healthcare professionals on organ donation and encouraging individuals to share their decisions on organ donations with their loved ones, she said.

“This will help their family members to understand and respect their decisions,” she said.

Doctors suggested better public education on HOTA, and encouraged families to discuss openly the topic of end-of-life and organ donation. 

They also suggested encouraging people to pledge to be an organ donor by signing an opt-in under the Medical (Therapy, Education and Research) Act (MTERA), which allows people to pledge their organs or any body parts for the purposes of transplant, education or research after they die. While HOTA only applies to certain organs and only for the purposes of transplantation, MTERA covers all organs and tissues to be used for transplant, education and research.

This will help make much clearer to families the deceased person’s wishes regarding organ donation, Dr Wong said.

More also needs to be done to encourage the public to identify themselves as willing donors, Dr Lee said.

“The physicians and families would not have to second guess the intent of the deceased, but focus on fulfilling his or her wish to add years of life to others as their legacy. With greater promotion effort, hopefully someday this generosity will be ingrained in our society and become something we can feel proud of,” he said. One person can collectively add 70 years of life to others.

However, doctors also pointed to some positive changes they have observed.

“I personally have observed a culture change as traditional attachments to the physical body gets eroded and the younger generation of Singaporeans are more willing to donate their organs after death,” Dr Loh said.  

Dr Wong noted similarly that increasingly, more families are now realising the “enduring legacy” that the act of organ donation can make and the good that it can do for others.

“We have often been humbled by their altruism and generosity while in the depths of their grief,” she said.