Sunday, May 29, 2016


Russia

'Gutted Like A Pig': Grieving Mother Takes On Russia's Organ Donation System

Nineteen-year-old student Alina Sablina died tragically in a Moscow traffic accident in 2014.
Nineteen-year-old student Alina Sablina died tragically in a Moscow traffic accident in 2014.
By Claire Bigg

When her 19-year-old daughter passed away two years ago after being hit by a car at a Moscow crosswalk, Yelena Sablina was devastated.

One month after burying Alina, her only child, Sablina suffered another shattering blow.

While perusing documents connected to the criminal case against the driver who killed Alina, she found out that her daughter had been laid to rest without seven of her organs, including her heart, kidneys, and part of her lungs.

"It was a shock because her organs had been removed without our consent," she says. "My child was gutted like a pig."

Sablina has since sought justice for what she considers a gross violation of both her daughter's dignity and her own rights as a mother.

Her legal battle ended last week when Russia's Constitutional Court refused to reconsider a previous court decision clearing the doctors who removed Alina's organs, stating that Russian medical institutions had the legal right to harvest organs from the deceased without notifying relatives.

Sablina's case has raised difficult ethical issues and revealed uncomfortable truths about what many health experts describe as Russia's flawed regulations governing organ-procurement practices.

"The law creates a complete lack of control over organ harvesting," Sablina charges. "People are buried and no one is even told that their organs were removed."

Last week's ruling has sparked an outcry among religious leaders in Russia.

"We understand that organs are needed for transplants, but taking them against the will of relatives and loved ones is inconceivable," says Chief Rabbi Berl Lazar.

Dmitry Pershin, a senior cleric from the Russian Orthodox Church, suggests that Russia introduce a voluntary donation system like those operating in the United States and other Western countries.

'Opt-Out System'

Russia has a so-called opt-out system, under which all adult citizens are presumed to have given consent to their organs being donated after their death unless they sign a notarized document stating otherwise.

Few Russians, however, are aware of this.

An opt-out system has been in place for decades in Israel, Singapore, and a number of European countries including Spain, Europe's leader in organ transplantation.

Organ donation advocates have long argued that the opposite opt-in system, in which donors must register their consent during their lifetime, has restricted the number of available organs and caused the death of countless patients waiting for a transplant.

But in Russia, health professionals say the effective absence of a national transplantation mechanism is canceling the benefits of an opt-out system.

Russia still performs very few organ transplants compared with Western countries, with fewer than 2,000 operations carried out in 2015.

Experts also warn that the vagueness of the country's law on organ donation, compounded by a lack of public awareness, has opened the door to violations, disputes, and public outrage.

"Presumed consent should not be in place in countries where people have a low level of trust in transplantology and in the health-care system," insists Vasily Vlasov, the president of the Russian Society for Evidence-Based Medicine and a professor at the Higher School of Economics.

Vlasov and other health professionals have long called on Russian authorities to switch to voluntary donation.

As a result of what he calls "substandard practices in transplantology," Vlasov says organs are often removed but not preserved, illegally handed over, and in some cases even sold by corrupt hospital staff.

"All this uncertainty fuels a deep distrust in the transplantation system among Russians," he says.

According to Sablina's lawyer, only three of the seven organs that doctors admitted harvesting from Alina actually featured in the hospital's official inventory.

Despite these troubling revelations, Vlasov says Sablina has been fighting a losing battle in Russian courts.

"In this case, the letter of the law was respected," he says. "But I very much want to believe that a wider public discussion will finally take place, and I hope this case will help foster such a discussion."

Prepped For Organ Harvesting

Russia's existing legislation on organ donation, which dates back to 1992, effectively allows doctors to hide the harvesting of organs from families in order to sidestep their potential opposition to the procedure.

And while the secrecy may help save lives, grieving relatives who accidentally find out about the postmortem surgery are often left feeling heartbroken and cheated.

"By concealing the planned organ removal, doctors create an artificial presumed consent," says Sablina's lawyer, Anton Burkov, co-director of the Yekaterinburg-based legal NGO Sutyazhnik.

In Alina Sablina's case, Burkov says doctors prepped the young woman for organ harvesting over a period of six days as her parents sat outside intensive care fervently hoping for her recovery.

"In court, we were able to establish that the head of the intensive-care unit called transplantologists the day after Alina was hospitalized and informed them that he had a potential donor," he says.

Yelena Sablina, who had flown from her hometown of Yekaterinburg to be close to her daughter, says she and Alina's father were deliberately kept in the dark.

Yelena SablinaYelena Sablina
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Yelena Sablina
Yelena Sablina

"We spent these six days in the hospital, we visited the intensive care unit twice a day, we literally lived in the hospital," she says. "We were never asked if we consented to her organs being removed."

On the last day of Alina's life, her parents were barred from entering the intensive-care unit.

Sablina says doctors didn't even bother informing them that their daughter had passed away. She learned about Alina's death when a funeral home called her the next day to offer its services.

"This is inhumane," she says.

Sablina is now pinning her hopes on the European Court of Human Rights, in the French city of Strasbourg.

She, too, hopes her daughter's story will help generate a long-overdue public discussion on organ donation in Russia.

"People don't want to know about this law until the moment it personally affects them," she says. "I'm trying to draw attention to this issue so people know that such inhumane laws exist in our country. Changes need to be made to render these laws more compassionate."
 


Claire Bigg

Claire Bigg covers Russia, Ukraine, and the post-Soviet world, with a focus on human rights, civil society, and social issues. Send story tips to BiggC@rferl.org​


 

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