Waiting for a donor heart

A bunch of tubes connect Jürgen Stouwe's body to a beeping black machine. The 51-year-old needs this apparatus to keep his heart beating. His eyes are alert, but every once in while his voice breaks as he speaks.

"I was physically fit. I went skiing and biking and high alpine trekking," he said. "But it started going downhill in the last two years."

Stouwe is just one of 256 patients who are waiting for a suitable donor heart at Europe's largest cardiac center in Bad Oeynhausen. Five of them are not even 16 years old.

"Some of the patients have been waiting for an organ donation for two years or more," said Jan Gummert, Director of the Department of Thoracic and Cardiovascular Surgery in Bad Oeynhausen. People on the "urgent waiting list" usually wait about three months, he said.

Psychological burden

Theo Ingerberg has been waiting for a donor heart for eight months. "The psychological burden is the most difficult factor," Ingerberg said. It's no surprise to the 61-year-old that the long wait becomes unbearable for some patients. "Without family support you begin to lose hope."

"There are far too few donor organs available," said cardiologist Gummert. About 20 percent of the patients on the waiting list die because they don't get a life-saving organ in time. "That's quite a lot", Gummert said.

In contrast to Austria or Spain, people in Germany don't have to actively state if they agree to donate their organs after they've died. They can sign up for a donor card. But they can also choose not to think about it at all. "I think that's when a certain indifference comes into play," Gummert said.

It's usually the family members who have to decide if organs can be removed in the event of someone who doesn't have a donor card dying.

That's not fair, says heart surgeon Jan Gummert who heads the clinic in Bad Oeynhausen. The major problem is that many people are not ready to talk about organ donations with their family members.

"You have to imagine it this way: A young person dies and then the parents are asked if they agree to their child's organs being donated. This happens in a situation where the parents are in mourning, they are dealing with the loss of a loved one," Gummert said. "That's the most difficult task one can inflict on someone. And if we could find a way to deal with that just like we do with wills, it would make it a lot easier for family members."

The German government wants to reform the transplantation law. Starting this summer, health insurance providers are expected to regularly send information on donating organs to its members. That should encourage people to decide if they are for or against organ donation. "I don't think this will drastically improve the organ donation situation," said Gummert.

Opt-out solution?

The heart specialist favors the opt-out solution practiced in many other European countries. In this model, everyone is considered a potential donor unless he or she appeals. But according to Gummert, there are other solutions which also make sense. "In some states in the US people are asked if they want to donate when they take their driving license."

He also understands if someone wants to opt out. But it's about giving people "a little push." "What constantly annoys me is the mass of indifferent people who say in polls that they are in favour of organ donations but then don't act upon it," Gummert said.

Those polls show that even though about 80 percent of people in Germany are in favour of organ donation, only about 20 percent actually have an organ donor card.

"But if 80 percent of the population is in favour of it, then our politicians should become a bit more courageous and incorporate the opt-out solution into law," Gummert said.

Medical coordinators could also play a decisive role in boosting the number of organ transplantations in Germany. "The full-time transplantation agent is the secret to why other countries have been able realize many more organ donations," the professor explained.

The cardiac center in Bad Oeynhausen also has a transplantation agent who does his work "more or less on a voluntary basis and in addition to his main job." One of his tasks is to identify potential organ donors and to address them. "This task is very time-consuming. The time budget of intensive care specialists is often too limited."

Theo Ingerberg points to the box of pills on his nightstand. "I have to take 19 tablets tonight when I eat my dinner," he said. These tablets keep his heart running. Ingerberg has no other choice than to continue to wait for a suitable donor heart. Thousands of other patients in Germany are waiting, too.

Author: Vera Freitag / sst
Editor: Helen Whittle