News - May 13, 2024 | 03:12 pm PT

Vietnam battles cultural stigma, boosts life-saving organ donations

After days of unsuccessfully persuading family members to donate an organ to save the life of their dying relative, a surprise phone call came to Dr. Pham Thi Dao after midnight.

A kind of folk tale

Just three days prior, at an emergency room in Hanoi’s Viet Duc Hospital, the brother of a patient made brain dead by a traffic accident vehemently denied an organ donation request by Dao, head of the facility’s organ transplantation consultation and coordinating unit.

"No. I won’t allow it," the brother said.

He was dead set on keeping the body of his 30-year-old sibling intact.

Dao, however, was not surprised.

Throughout her decade-long career in organ donation, she is no stranger to such refusals. Donating body parts is extremely rare in Vietnam and often even stigmatized.

"I’m used to it," she said.

Dao had been searching for family members of the patient to donate, to no avail. Her optimism had then risen momentarily when she heard of the "brain dead case that may be a potential organ donor." But the brother dashed her hopes.

She accompanied the bereaved family seeking a donor every step of the way in their search. From sharing heartfelt, meaningful condolences – Dao is obviously no stranger to death and the grief of families who lose loved ones – to helping with complicated bureaucratic paperwork. She made sure only to suggest seeking an organ donor once the family had calmed from the initial shock, anger and terror.

But her words fell short.

And she understood why.

Most Vietnamese still hold the belief that their loved ones should be allowed to cross over to the other side in one piece, and organ donation is still too far remote of an idea from what’s become tradition in their thousands-of-years-old culture. When someone’s death is near, families often bring them home to die, instead of letting them spend their last moments in a hospital.

Patients undergoing dialysis at the Thong Nhat Hospial in HCMC, April 2024. Photo by VnExpress/Phung Tien

At 1 a.m. the next day, Dao received a call from the family of the brain-dead patient. They wanted her help. On the way back home to Bac Ninh, they realized that a piece of the deceased’s skull was still at the tissue bank. When they returned to the hospital, medical workers refused their request to take back the body part, as the paperwork had not been approved correctly.

Dao did not hesitate.

She rode her motorbike 20 km to Viet Duc Hospital in the middle of the night to sign the paper allowing the family to receive the last piece of their loved one. They thanked her from the bottom of their hearts, before returning to Bac Ninh.

"I only thought of helping them complete their final wishes," Dao recalled.

She never expected her act of kindness would change the family's mind. As morning came, she received a call from the brother, saying the family had agreed to let the man's organs be donated. The ambulance once again returned to Hanoi, and just a day after that, the man's heart, liver, kidneys and lungs were transplanted into four other dying patients, saving all of their lives.

The story was from 2019, but to this day, doctors at the organ transplantation consultation and coordinating unit still tell it like a folk tale that represents difficulties of persuading family members to allow organ donation.

"The most difficult aspect of this job is the fact that the family cannot bring themselves to accept that their loved ones have died," Dao said.

In the 14 years since 2010, Vietnam has recorded just over 150 approvals for organ donations. About 67% of those cases were at Viet Duc Hospital, which still leads the nation’s hospitals in terms of donation numbers.

But the nationwide figure is nowhere near enough, considering how there are thousands of terminally-ill and dying people waiting for organ transplants every day.

Ever since the 2006 law on organ donation came into effect, there have been only 500 organ donations in Vietnam.

In order to increase this number, counselors like Dao play a vital role. But their efforts have still not yet been enough to spark great changes.

Emissaries of life

Under the law, the removal of any organ from a brain-dead patient must be approved by their family members in documents, even when the patients themselves have given their own approval while still compos mentis. This is where counselors come in to persuade the families.

"Doctors or nurses could do this job, but they must be professionally trained for it to work effectively," said Dong Van He, director of the National Organ Transplantation Coordination Center.

He said that in certain countries with high organ donation rates, like Spain or France, around 60-95% of the population agree with organ donation, and each hospital must have personnel to counsel families of brain-dead patients.

Doctors and nurses perform an organ transplantation on a patient at the Cho Ray Hospital in HCMC, February 2023. Photo courtesy of the Cho Ray Hospital

In December 2022, the coordination center piloted a pro-transplant project in 16 northern Vietnam hospitals for one year. Each of the hospitals sent a team to Hanoi to be trained in encouraging organ donation, including learning about the legal aspects governing organ donation, how to identify potential donors, procedures to preserve organs, and how to best approach the family members of patients.

"The family is a mess when a loved one dies, so speaking about organ donation at such a time is truly insensitive. As such, counselors must have the skills to approach and explain things to the families in the most professional ways," He said.

Following the training courses, these teams would return to their hospitals, ready to assume their roles as "emissaries of life."

Within the first year, the program has shown remarkable results, according to He. Thirty-three families at 16 hospitals agreed to donate their members' organs following these new consultation processes. Within the same time period, there were only two such cases among the 460 other hospitals in the country.

Dao Thi Huong, deputy head of the emergency department of the Thai Nguyen Central Hospital, has been a member of the training program since late 2022. She said that she and her colleagues used to only think about how to deliver the bad news to the families of patients who had gone brain dead. But now, they realize there is another option to save others' lives through organ donation, a kind of light at the end of the tunnel, if perceived in a certain way.

"When we encounter a brain death case, we advise the families to either bring the patient home, or transfer them to the Viet Duc Hospital if they agree to organ donation. There, even if a miracle does not come, the family can still do good and donate their loved ones' organs to save other lives," Huong said.

Since then, the families of most brain dead patients at the Thai Nguyen Central Hospital have been encouraged by doctors to transfer them to the Viet Duc Hospital for organ donation. Within one year, four such transplants have been completed.

Huong's team has become a model for coordination between the clinical sector and the counseling unit to find and encourage potential candidates for organ donation. After the positive results of the project's first trial year, the organ donation coordination department has expanded the program to 58 hospitals nationwide, with around 200 people trained for the job.

However, the program has only been able to solve individual problems at hospitals. In order to increase organ donation sources, He said there should be more systematic ways to resolve the issue.

"Hospitals have never truly cared about organ donation," he said.

He said the approval for one's organs or tissues to be donated is shown through an organ donation registration card. All medical facilities are provided such cards by law, but in reality, only three facilities have them: Hanoi's Viet Duc Hospital, Hai Phong's Viet Tiep Hospital, and HCMC's Cho Ray Hospital.

To deal with that, since 2022, the organ donation coordination center has been allowing online organ donation registration, and those receiving registration can receive their cards at the post office. Such a measure has resulted in a flux of registration, amounting to over 80,000 people as of today.

However, He said the number is still far too small for Vietnam's population of 100 million people. If over 1,500 hospitals have such cards available, the number of registered organ donors would be much higher.

In South Korea, with a population at only half of Vietnam, 4 million people have signed up for organ donation, Hue said. In several European countries like Spain or France, donation is the norm and people have to actually opt out of organ donation after death.

Nguyen Hoang Phuc, vice director of the coordination center, proposed integrating organ donation registration with driving licenses and personal IDs. Such a method would be more convenient for family members and medical facilities in determining patients' wishes, should they ever become brain-dead.

He said policies, mechanisms, and especially funds are needed to help hospitals make their potential in providing potential organ donation candidates a reality.

The road to rebirth

With over 30 years under her belt in the organ donation field, Du Thi Ngoc Thu, head of the organ transplantation coordination unit of Cho Ray Hospital, said solving problems regarding costs is a huge drive in hospitals in looking for potential sources for organ donation.

In many countries, non-profit organizations cooperate with the government to fundraise for national organ transplantation coordination units. When a hospital has a brain death case that allows organ donation, the money is spent on all facets of the transplant, including testing and paying health workers overtime.

As such, Thu proposed creating a separate fund for organ donation and transplantation, which would be managed by an organization. This fund would need basic support policies from public and private health insurance, as well as the Ministry of Finance and the Ministry of Labor, Invalids and Social Affairs.

"If things are done transparently and fairly, it would not be difficult to raise the money," Thu said, adding that more degrees of transparency are needed during the organ transplantation coordination process to encourage people to donate organs and prevent organ sales.

Doctors at the Cho Ray Hospital deliver donated organs to another site for transplantation in 2023. Photo courtesy of the Cho Ray Hospital

In fact, the list of those waiting for organ transplantation has not even been synchronized nationwide yet. When a brain death case happens, potential recipients for organs are chosen either manually or through software. Most organ transplantation facilities are now opting for the former, according to Tran Ngoc Sinh, vice president of the Vietnam Society of Organ Transplantation. A council decides on who would be best to receive the transplant, based on criteria like blood types, age, underlying conditions and immunological compatibility.

Cho Ray Hospital has pioneered using an automatic waiting list managed by software. Using the same criteria listed above, the system chooses who is best suited to receive a transplant based on a score system. If the one with the highest score is not chosen, doctors will need to provide a reason why before the system moves to the next person down the line.

Everything is traceable within the system, making it easier to manage and prevent organ sale. The less human intervention there is, the more transparent the process will become, proponents argue.

Real people, real lives, real stories

A fully functioning organ donation and transplant system could save thousands of lives every year.

58-year-old Nguyen Xuan Toai is one of those lives.

In July 2020, Toai, from Thanh Hoa, was diagnosed with severe pulmonary fibrosis. Doctors said he only had 2-3 months left to live. So, signed him up for a lung transplantation program at the Central Lung Hospital, his only chance at life. He was added to a waiting list with over 20 others.

Toai returned to Thanh Hoa with not much hope. But two months later, his son called and said the family of a 31-year-old man, who was rendered brain-dead after a traffic accident, agreed to donate his organs. Toai immediately caught a ride to Hanoi.

After several tests, Toai was determined to have high compatibility with the donor. Besides the lungs, the family of the deceased also agreed to donate his heart, liver, kidneys and arms, helping to bring six others back to life from the brink of death.

Thanks to his new lungs, Toai entered a new chapter of his life. He can now do physical exercises by himself instead of having someone accompany him everywhere he goes. Even when he got Covid-19 in 2022, he recovered after spending nine days at the hospital.

"I've always considered myself very lucky to receive this gift," Toai said, adding that he had wanted to visit the family of the donor many times to give his thanks. However, the law does not permit such information to be publicly available.

But eventually, fate and luck brought him and the donor's family together when his wife met the family in Hai Duong on a trip where organ recipients give thanks to their donors. Over the past four years, the two families have become friends, frequently exchanging gifts. In July every year, the birthday month of the donor, Toai and his family travel to Hai Duong for a visit to pay tribute in memorial to the invisible string connecting the lives and deaths of the two families together.

Le Nga, Le Phuong, May Trinh