Can New Organ Donor Law Save Lives?

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Inszeniertes Portrait Claudia Krogul, in ihrem Wohnzimmer.

German lawmakers are considering making the country’s organ donor program opt-out rather than opt-in. Their decision could save many lives, but it’s deeply controversial. A transplant recipient and a father who had to choose whether to donate his son’s organs share their views on the life and death legislation.

By Cornelia Schmergal

At 6:06 p.m. on March 21, 2012, Claudia Krogul stretched out her left index and middle fingers and made the victory sign. She was dressed in a white hospital gown with an oxygen tube running down her nose. Equipment from the intensive care unit protruded from behind her bed. Her face was pale, but she was smiling.

The night before, doctors at the Hannover Medical School performed the transplant that provided Krogul with a new lung. The operation lasted more than five hours and she first woke up from the anesthesia early in the evening. When a doctor pulled the tube out of her throat a short time later, she took the deepest breath she could. “For the first time in my life, I felt like I could breathe properly,” she recalls.

Today, the photo of Krogul making the V sign hangs in her home in Nordkirchen, a town in the German state of North Rhine-Westphalia. It represents her victory over the threat of death by suffocation. In a black felt tip marker, she wrote the word, “Chances,” over it.

The transplant happened almost eight years ago. Last September, Krogul celebrated her 40th birthday with a big party. Some days, she’s simply amazed to still be alive.

Krogul suffers from cystic fibrosis, a genetic defect that causes the lungs to gradually clog. For decades, it was considered a children’s disease because so few people who had it reached adulthood.

At the age of 3, doctors predicted she wouldn’t live to see her 18th birthday. After emergency surgery, they advised her parents to take their child home and make the best of the next few years, because they didn’t expect her to live for long.

“What, You’re Still Alive?”

Each year of life seemed like a gift for Krogul, even if it came with a bitter aftertaste. When her fellow students played dodge ball in gym class, she watched from the bench. When her friends kissed for the first time, she was lying in the infection ward. When other 18-year-olds got behind the wheel of their first car, she was given a wheelchair. When she attended a high school reunion many years later, people asked, “What, you’re still alive?”

“Yes,” she said. “And how.”

She’s alive because another person died. Krogul will never know any more about the woman who gave her a new lease on life than the fact that she was from a European country. She spent two years and three months on a waiting list hoping for this chance.

As of January 2020, more than 9,000 people in Germany are on the waiting list for donor organs. Many of those hopes will be in vain. Each day, three people on that list die because no suitable organ can be found. The list doesn’t include all the patients who never make the waiting list because they are already too weak for the long operation.

Organ Donors in Germany

As such, the need for action is great. On Thursday, Germany’s federal parliament, the Bundestag, will vote to amend the country’s organ donor law. It’s a decision that could hardly have any further-reaching consequences — for patients awaiting a life-saving organ, but also for individuals who still haven’t decided whether they want to donate their organs someday. They may be forced to make that decision soon.

Good Prospects of Passing

Two bills with good prospects of passing will go up for a vote in the next week. The proposal that is the subject of the greatest controversy is the so-called presumed consent solution proposed by German Health Minister Jens Spahn of the conservative Christian Democratic Union (CDU), Karl Lauterbach of the center-left Social Democratic Party (SPD) and other members of parliament. Under that plan, anyone who has not issued their objection during their lifetime is considered to have given their presumed consent and can automatically be considered as a potential donor in the event of brain death – at least if their closest relatives aren’t aware of any objections.

A less invasive version of the law, sponsored by Green Party leader Annalena Baerbock and members of the CDU, envisions regularly reminding all people living in Germany that they need to make a decision about whether or not to become an organ donor. When a person applies for an ID card, which happens at least every 10 years, employees at the agency would be required to raise the issue with them. General practitioners would also be provided with compensation in the future if they advised their patients on the issue. The legislation would allow anyone living in Germany to enter a “yes” or a “no” in an online federal online register.

What both bills have in common is that they seek to get people to address an issue that most prefer to repress: their own mortality.

As a matter of life and death, members of parliament should only follow their conscience and vote freely, without any party constraints. The sensitivity of the debate can already be seen in the words that characterize it, like “charity,” the “right to self-determination” or “solidarity.” It’s still uncertain how members of parliament will vote because both bills have their pitfalls.

Reliant on Its Neighbors

But the fact is that when it comes to transplants, Germany is reliant on the solidarity of its European neighbors. Kidneys, hearts and lungs often have to be imported. Eight countries are members of the Eurotransplant network, the intermediary body for donated organs. In all these countries except Germany, from this year onward, the presumed consent, opt-out solution will apply. Its proponents argue that it’s only fair to introduce this rule everywhere.

But presumed consent also has many opponents, who warn that the right to physical integrity does not end with death. They argue that declaring the body as a public good by law could discourage people who might otherwise have been willing to donate and thus exacerbate the crisis.

The number of organ donors has been going down over the years. Accusations in 2011 that medical records at a university hospital in Germany had been manipulated to help patients get a new liver, led to a further decrease in the number of people willing to donate. The German Organ Transplantation Foundation (DSO) counts about 950 donors per year currently, from whom around 3,000 organs are removed in operations. But those figures are stagnating.

In principle, 84 percent of Germans consider an organ donation to be the right thing to do, but only 39 percent have a donor card or the proper permission. Health insurance companies have been sending out information letters regularly for several years now, but they usually wind up in the trash.

“People are just too lazy,” says Krogul. She says she’s trying to counter that with her own story. When the Bundestag votes on Thursday, she will once again find herself standing in front of a school class telling them in her husky voice how the transplantation has changed her life.

She says her new lung felt like a part of her from the very beginning. And yet Krogul also says it would have been a “nice thought” if the woman who saved her life would have had a donor card. “I hope her parents didn’t have to make this decision all by themselves.”

The way the system works today is that if there is no written will or none that was handed-down in some other way, relatives must decide whether they agree to organ donation. The subject is never addressed in many families, often leaving a torturous choice for the bereaved in cases of hardship.

A Christmas Tragedy

Heiner Röschert lost his two children at Christmas eight years ago. His daughter Pia was 27 years old at the time, his son Felix 25.

He had cooked for his children on Christmas Eve. At 1:30 a.m., the siblings loaded their presents into the trunk and climbed into Pia’s Volkswagen Golf. She hadn’t had anything to drink and wanted to drive her brother home to the nearby city of Würzburg. Röschert had gone to bed.

At 4 a.m., his doorbell rang. Blue lights flickered through the windows, and police stood in front of the house together with an emergency chaplain.

The men told him that his children had been in an accident, that their vehicle had been hit by two other cars that were speeding. In the living room, a policeman placed Pia’s handbag on the table. He was told that his daughter had died at the scene of the accident, that his son was in intensive care and that there was little hope.

Röschert says his memories of what happened afterward are blurred. At that moment, he says he felt like he was in a “trance.”

The chaplain drove him to the hospital. Pia’s body had been placed in a separate room. Her face had a white shimmer and her body had gone cold. Röschert says he could already sense the smell of death at that point.

In the intensive care station, his son Felix had been placed on life support. Röschert stayed at his son’s side in the hope he would survive. He sat at the foot of the bed, at times praying and at times humming the song he sang with his children in the car when they would go on vacation. It was a song by the German pop star Peter Maffay, and the first line went, “I never wanted to grow up.”

At one point, the senior physician led Röschert into his office, where he poured a cup of coffee and asked if he and his son had ever discussed becoming an organ donor.

“Yes,” Röschert said. He had assumed the question would come, and he had no doubts.

Felix is a nurse at Würzburg’s university hospital, where many patients are hoping for a donor organ. Whenever another person dies after waiting in vain for an organ, Felix laces up his shoes and runs along the banks of the Main River to counter his frustration and hands out organ donor cards at the local football club.

“Why Take Your Organs with You?”

As Röchert recalls it, Felix told him, “When I die, I can’t take anything with me — no money, no house, no girlfriend, not even the flag of my favorite football club. Why take your organs with you after you die when you could donate them?”

After two doctors certified his son’s brain death around midnight, Röschert gave approval for his organs to be donated. He set only one condition — that Felix’s respirator be kept on until his girlfriend could arrive. She wanted to say goodbye.

On Dec. 26, 2011, Röschert accompanied his son’s body to the operating theater. He waited there until the glass door closed. That morning, doctors transplanted five organs from Felix’s body.

“I didn’t make the decision, my son did,” Röschert says. Even today, eight years later, he’s certain it was the right decision and he is proud to have had his son. “But I don’t know what I would have done if I hadn’t known what Felix wanted.”

Health Minister Spahn wants to compel all people living in Germany who are age 16 and over to make a decision now. The CDU politician himself reopened the debate about presumed consent a year and a half ago. Not everyone in his party is happy about it.

As late as 2012, when the German parliament passed the current law, Spahn still opposed presumed consent. But today, he is trying to persuade a majority in parliament to back the controversial idea. The number of people supporting the idea has grown over the months and Chancellor Angela Merkel is also in favor of the initiative.

Sub: Considerable Consequences for Family and Society

As part of his campaign for the presumed consent policy, Spahn sent a letter at the end of last week to all of the 200 or so members of parliament who are still undecided. “It is a matter of sound judgement,” he wrote. “I hope that we will find the courage to take this big step,” writes Spahn.

The vast majority of our “friends in Europe,” particularly in Spain and Croatia, have had “very good experiences” with presumed consent, he wrote. “Because, yes, presumed consent may not be the panacea that solves all problems, but societal attitudes have changed fundamentally in these countries,” Spahn argued. “A culture of donating organs has developed.”

But Spahn has also been met with resistance. Many academics consider presumed consent to be the wrong answer. For example, theologian and ethicist Peter Dabrock, a professor of theology at the University of Erlangen-Nuremberg, listed the pitfalls of the draft legislation in a 17-page position paper for the Bundestag. He warns that everywhere in medical law, also because of Germany’s difficult history, informed consent must be the “gold standard.” He argues that we can’t allow silence to be regarded as consent in a matter of life and death that has “considerable consequences for family and society.”

Dabrock, who is also chairman of the German Ethics Council, which advises the federal government and parliament on ethical issues, carries a donor card in his wallet, and he thinks it is “expressly important” to ensure there are more organ donors. “However, that goal cannot be achieved through presumed consent,” he says. “I fear it will destroy trust.”

People affected by transplantation decisions also see the dilemmas posed by all the legislation drafts. Claudia Krogul knows that her lungs won’t last forever. In that sense, she tends to lean toward presumed consent as a solution. “We should at least try it,” she says.

Heiner Röschert holds a similar view. At the same time, he doesn’t feel that anyone should be turned into an organ donor who has never expressed an opinion about it. He says he has a much greater problem with the second bill circulating in the Bundestag. “I fear that it won’t change anything,” he says.

And it’s true that the Baerbock plan provides only a pared down alternative to presumed consent. Originally, experts had demanded that every person in Germany be required to give a “yes” or “no” answer on whether they want to be an organ donor. They view as role models New Zealand and many states in the United States, where people are asked whether they want to become organ donors when they apply for their driver’s license. A heart on the plastic card identifies potential donors.

Green Party leader Annalena Baerbock also originally flirted with that idea, as well, but in order to gain the support of as many members of parliament behind her bill as possible, she agreed on a compromise with other members of the Bundestag from various parties. Now, there will be no requirement that people make a decision when they visit a government agency.

There are now doubts about whether the pared-down version can really have much impact. In his letter to fellow members of parliament, Spahn expressed his “serious concern” that this solution won’t work. “More talk, education and information alone won’t go far enough.” Experience has shown this, as well. Despite numerous campaigns, he wrote, the number of donors fell to a low point in 2017.

On Thursday, the Bundestag is scheduled to vote on presumed consent, since it’s the most far-reaching proposal. If the first bill doesn’t get through parliament, supporters could either abstain or shift their votes to the Baerbock initiative in order to ensure that there’s at least some kind of reform. At the end of the day, both bills do have one thing in common: They would create a nationwide register to provide greater transparency about potential donors.

A third bill submitted by the right-wing populist Alternative for Germany, which is characterized by its general skepticism toward organ donation, has little or no prospect of passing.

Major Ramifications

But one shouldn’t underestimate the possible ramifications of a new law in Germany on organ donors. Of the 1,416 people official reported brain dead to the German Organ Transplantation Foundation in 2018 who were eligible as donors, two-thirds gave up their organs. In cases of emergency, the willingness is greater than some might suspect. But even if every one of those 1,416 people had become donors, it still wouldn’t been enough to eliminate the organ shortage.

Direct comparisons with Spain’s much-vaunted model are also misleading. Donor numbers are higher there because transplantation is possible not only after brain death but also after cardiac arrest in the country. The most important development in the Spain, actually, is that it has been working for years to establish more professional procedures in hospitals, and also provides financial incentives.

A similar law didn’t go into force in Germany until April — years too late. Hospitals are now better paid for the removal or organs. Earlier, the insertion of organs had been more lucrative. Under the law, each hospital is to get a trained transplant commissioner as well as additional support in determining whether a brain death has occurred. Experts believe this will be key to solving the problem. The belief is that it is likely that several thousand potential donors have failed to be identified in the past because of a lack of staff and money. Counselling for family members of individuals affected by transplantation is also included for the first time in the law.

Röschert says he would have appreciated that kind of assistance. In the hours when his son was still connected to life support, he had enjoyed the company of many compassionate doctors and nurses. From the moment he left the hospital in the morning where his two dead children were lying, he says he was left on his own.

Greater Recognition for Donors

There was much to do in the first few weeks — he had to organize the funeral, clean out his children’s apartments and also the first steps in taking the people responsible for the accident to court. Once he had taken care of everything, he says, he was overcome with pain. He had to give up his job.

In 2016, Röschert founded an initiative for relatives of organ donors. It has given him a goal in life again. He would like to see greater recognition for organ donors. He’s even come up with a logo for it, a setting sun.  If he has his way, the symbol will become widely known and could be printed in obituaries or placed on gravestones, indicating that the person here saved at least one life.

The thing that helped him the most, he says, was a letter the German Organ Transplantation Foundation sent to him a few weeks after his son’s death. It informed him that his son’s organs had gone to three men and a woman.

Two months ago, he received another letter from the foundation stating that eight years after Felix’s death, all four organ recipients are now leaving entirely normal lives.

 

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