Thanks, But No Thanks

On the last day of Zhao Xiang’s short life, her request to donate every organ possible to save the lives of others was brushed off by the president of Shenzhen Liulian Hospital.

Zhao, her parents, and transplant specialists from the Shenzhen branch of the Red Cross Society of China were told the hospital had no operating room available where doctors could surgically remove organs after she died from an incurable brain tumor.

The president, surnamed Hu, refused the twenty-two-year-old woman’s dying wish mainly because he “feared bearing the risk and responsibility” for the surgery, said Gao Min, who coordinates organ donations for the Red Cross in Shenzhen.

Risk and unwillingness to accept responsibility, however, are just two of the many barriers standing between would-be organ donors and thousands of ill people desperate for organ transplants in China.

(China Photos/Getty Images)
Doctors perform a transplant on a patient at Xi’an Xijing Hospital on November 1, 2006 in Xi’an, Shaanxi province.

The Ministry of Health, in cooperation with the government-affiliated Red Cross and its branches around the country, has been busy since November 2009 reorganizing transplant services and building a national system for recruiting voluntary donors and fairly allocating transplantable livers, kidneys, corneas, and other body parts.

Assigned to lead the effort is a Hong Kong University team supervised by Wang Haibo, at the La Ka Shing Faculty of Medicine and the initiative’s chief engineer. The ongoing task has involved building a database and setting medical standards that blend established, international practices with Chinese health ministry regulations and domestic circumstances.

Three years on, though, the program designed to match voluntary donors and needy recipients has faced one setback after another.

And it’s thus yielded scant results: Only about 400 transplants from organ donors have been conducted since the ministry and Red Cross started working together to link donors and patients in March 2010. More than one hundred of these have been in Guangdong province, which includes Shenzhen.

Indeed, the ministry says every year only about 10,000 of some 1.5 million ill people across the country who need a transplanted organ are fortunate enough to get one.

And a significant number of these transplanted organs come not from willing benefactors like Zhao but deceased prison inmates—a common organ-harvesting practice that China has pledged to phase out.

After officials at Liulian refused Zhao’s final plea, doctors and the family tried to transfer her to Shenzhen Longzhu Hospital, where administrators were willing to allow the surgical procedures.

During the thirty-minute ambulance ride between hospitals, however, Zhao’s heart stopped beating. And because accompanying paramedics had neither a respirator nor other critical equipment on board, she died.

By the time the ambulance reached Longzhu, Zhao had been dead for several minutes. Only her corneas were deemed safely useable for transplants.

A dejected Gao and Zhao’s parents followed the body into the emergency room. And her father, Zhao Aimin, raised a question that begged an answer: “Why is it so hard to do something good?”

That question, in fact, has long been on minds at the highest levels of China’s health system. Offering a short-form answer August 22 was Vice Health Minister Huang Jiefu, who has urged reform for the nation’s organ donation arrangement.

“What holds us back are not traditions or morals, but our system,” Huang said. “If China cannot establish a voluntary organ donation system for its citizens, inevitably there will be a severe organ shortage.”

The system’s failures have roots in a lack of confidence that’s worsened over the years because the richest and best-connected transplant candidates have enjoyed easier access to organs than most Chinese people.

Wang told Caixin that potential volunteer donors often hesitate or decide against offering organs because they don’t want to support a system that helps only high-status patients with enough money to pay the right people.

The ministry has tried to rebuild trust since putting Wang’s team to work in 2009 and announcing in December 2010 that procedures for patients “applying for human organ allocations and transplant sharing should conform to medical needs and adhere to the principles of fairness, justice and openness.”

The scheme crafted by Wang’s team and adopted so far on a pilot basis in selected areas around China relies on a computer database that includes lists of available organs and patients in need. It can integrate donor information with patient waiting lists according to location, age, and urgency linked to an organ candidate’s health status. The intent is to fairly and accurately match donors and recipients who need help most.

“This system is not simply a data reporting system or an automatic organ allocation system,” Wang said. “What decides where organs are allocated is not those operating the system but the national allocation policy.”

It’s also designed to treat rich and poor evenly. “Before allocation results come out” of the database, “no one knows to where the organs will ultimately go,” he said.

The reform effort has also taken aim at cost barriers and looked for ways to streamline the financial end of the donation and transplant process.

Costs associated with donor and transplant candidate health care, high-tech equipment needed for handling harvested organs before transplant surgeries, funerals for deceased donors, and survivor benefits can add up quickly, Wang said.

In other countries around the world, medical insurance policies cover treatment costs while organ procurement organizations (OPOs) pay organ-maintenance expenses, Wang said. National social security schemes and humanitarian organizations such as the Red Cross help with funeral and survivor expenses.

The Red Cross Society of China set up a special fund for organ donations that can be tapped to provide a certain amount of relief for organ donors who are poor.

“Donor families sometimes come back to the Red Cross for additional financial help” after an organ donor has died, said Meng Wei, who works with Gao as chief coordinator of transplant services at the Shenzhen Red Cross. “Although we can’t give them much money, each month we help five to six families.”

Health ministry officials, meanwhile, have given attention to establishing a non-profit foundation that would raise and distribute funds to cover donation-related costs.

Another puzzle piece lies in the use of OPOs—non-profit organizations responsible for helping assess potential organ donors and determine whether they qualify for support.

Dr. Yang Chunhua cooperates with an OPO attached to First Affiliated Hospital at Sun Yat-sen University in Guangzhou that helped Gao’s agency with Zhao’s last-days request. Gao asked Yang, who works in an intensive care unit, and his OPO team members to assess the woman, study the legal and ethical parameters of her donation request, and determine whether her organs could be safely transplanted.

“The preliminary assessment showed that Zhao’s whole organ system was in line with donation requirements,” Yang said.

If Zhao had lived long enough for donations, Yang’s OPO team would have provided the information needed for the computer system to match the donor and recipients based on medical priorities and location.

China’s first OPO was formed last year in Guangzhou, and since then another 163 have been added at hospitals around the country. A potential donor, however, can offer organs at any hospital nationwide. The long-range plan is to replace a system of hospital transplant centers with OPOs that follow organ transplant rules tightened by the health ministry in 2010.

The process leans on a system of making organs available first to patients being treated in the same hospital where a donation occurred, then to those in the same OPO service region or province. If there is no local need, an organ could be sent to help a patient in another part of China. Every patient has the right, however, to reject any organ offered.

In the future, the system is expected to be modified to allow organ sharing within provincial administrative regions. Wang said OPOs are likely to operate independently and oversee patient waiting lists compiled according to province.

Zhao was declared dead by a doctor who had no ties to Yang’s team. A line separating attending and OPO doctors was drawn to ensure life-saving measures for potential donors are never compromised.

The rules say a donor’s personal doctors and those involved in transplant procedures can work for the same hospital. But Red Cross coordinators and OPO doctors have faulted some hospitals for failing to cooperate with requests for information about potential organ donors and the use of surgical facilities.

Three organ donation coordinators with the Shenzhen Red Cross who asked to remain anonymous said they’ve been turned away by hospitals while trying to facilitate a transplant process.

Indeed, OPO doctors said hospitals regularly refuse their requests for the use of operating rooms for transplants, forcing them to find alternatives that are complicated and potentially dangerous.

Too Many Regrets

The rejection of Xiang’s deathbed wish to donate organs was related to her family status and life near the bottom of the social ladder.

The young woman left her home in the Hunan province city of Shaoyang and moved to Shenzhen in 2009 to work as a migrant laborer. Three years later, she was diagnosed with a brain tumor.

Zhao underwent surgery and chemotherapy, but in July she took a turn for the worse. Doctors gave up hope. One doctor told her parents they should “go home and spend her last days well.” Doctors also rebuffed the family’s requests for a longer hospital stay and pain medicine, saying there was no need to waste money on the terminally ill woman.

At the time, Zhao and her parents were renting a tiny apartment in Shenzhen. One day while watching television they saw a public service advertisement for the Shenzhen Red Cross Society of China asking for organ donors.

Zhao liked the idea, and her father contacted Gao.

“We’re far from noble,” the father said. “We just hoped our daughter could live in this world in another way. If life cannot continue, let (another) life be prolonged.”

Advertised pleas for organ donors have been more common in Shenzhen than in other parts of the country since 1999, when a terminally ill professor at Shenzhen University, Xiang Chunmei, made headlines by pledging her corneas but finding no local system for handling donated organs.

“At that time, we suddenly realized there was no system in place,” said Meng. “People didn’t know which departments to contact or which procedures to complete in order to donate their corneas.”

The Shenzhen Red Cross stepped up to the task and coordinated a system. “Then we started accepting applications for donating corneas,” he said.

That same year, more than 1,000 people in Shenzhen applied to donate corneas. And in 2003, the Shenzhen Municipal People’s Congress passed China’s first local ordinance covering organ donations and transplants.

“We just started earlier than others,” Meng said. “We attach great importance to publicity, continuing to strengthen in the public mind the organ donation idea. The government is also very supportive.”

The city government’s Health and Population Family Planning Commission and the Red Cross last year ordered hospitals to install bulletin boards promoting organ donations. Since then, 240 volunteers with the Red Cross have kept the boards updated and taken other steps to spread the word in neighborhoods.

A recent health ministry survey in Shenzhen found high public support for and awareness of organ donation issues. Meng said he hopes in the future “organ donations will be as common as blood donations.”

That hope was alive when Zhao’s father called Gao and asked him to help process his daughter’s donor application—one of about 10,000 such pledges on file with the Shenzhen Red Cross.

Gao went to the family’s home and explained the donation process, making clear they would receive no compensation. The parents signed a donor application for Zhao, who by then had fallen into a coma, and asked that the Red Cross help them find a hospital where she could spend her final days.

On August 28, Gao accompanied the family to Liulian Hospital. The attending physician, Zhang Junlin, had experience with migrants including those near death and offered Zhao’s parents hospice care in hopes of supporting her final wish.

Zhao was treated with simple medication and hooked up to a respirator at a daily cost of more than 1,000 yuan—equal to one month’s wages for her father.

Since the Red Cross could not help cover the expenses, Gao arranged for the local media to report the family’s plight and Zhao’s offer to donate organs. In this way, they raised more than 10,000 yuan from private donations which, Gao said, was “just enough to settle the hospital fees.”

After the Liulian president turned down Zhao’s request for an operating table, the local media picked up the story. That touched off a wave of public criticism directed at the hospital.

Several sources interviewed by Caixin said institutional shortcomings, not the hospital, were to blame for the sad end to Zhao’s life.

Huo Feng, a doctor who works at the General Hospital of the Guangzhou Military Area, said that in her case “no one knew whether there was a process allowing the hospital to avoid risk, nor a rule to ensure the ambulance transporting Zhao would be equipped with a respirator.”

Huo said all of the country’s hospitals have an obligation to work with the transplant system, but the health care system overall “still hasn’t adjusted. That’s why there is this much regret.”

Indeed, Wang said the donor-recipient matching system today handles only 60 percent of all organ transplants in China.

Min, of the Red Cross, lamented that “for each organ donation, we go back and forth thinking about all the possible problems that could be encountered.

“We try to be foolproof. But why are there still so many regrets?”