When And How To Die: Germany Debates Whose Choice It Is

Aug 7, 2014
Originally published on August 7, 2014 7:49 am

Stefan Daniel says he has no control over the multiple sclerosis that is short-circuiting his body.

The disease, which attacks the nervous system, has forced the 51-year-old German psychologist to give up his career and most hobbies, including running and photography.

He spends his days in an electric wheelchair and rarely ventures out of his Berlin apartment.

"It's so difficult for me to open the door," he laments.

A caregiver comes to his home four times a day to help him with meals, cleaning and the growing number of other tasks he can no longer do himself.

But there is one thing that Daniel refuses to relinquish to his illness: the choice of how and when he will die.

"I've seen a lot of people with MS and who are not able to get out the bed, and this is no life, not for me," he says in a slow and soft voice that is indicative of the disease. He smiles when asked how he feels about his decision.

"There is only one word in me — freedom," he says.

A Fuzzy Legal Question

Daniel is one of many Germans who are opting for euthanasia or assisted suicide to end their suffering. Experts and officials in Germany say it could be hundreds, possibly thousands — no one knows for sure.

That's in part because assisted suicide is a murky legal question in Germany. Killing terminally ill patients directly, even if they request it, is illegal in the country. Prescribing certain barbiturates used for euthanasia in other countries is also illegal in Germany. But prescribing other drugs to terminally ill patients and then letting them ingest or inject those medications is permitted.

Germany's main medical board overseeing doctors opposes euthanasia, but German courts have backed physicians who prescribe authorized drugs to terminally ill patients seeking to end their lives.

Calls For A National Debate

Chancellor Angela Merkel's new government says the current approach to assisted suicide in Germany won't do. It is seeking a nationwide discussion this year to establish what euthanasia advocates fear will be a de facto ban on assisted suicide in Germany.

Merkel's Christian Democratic Union political party has vowed to stop organizations and doctors it claims are profiting from vulnerable patients seeking to kill themselves. Euthanasia foes are also concerned that Germany is surrounded by countries with pro-euthanasia and assisted suicide laws, some of which are being broadened.

Switzerland, for example, allows foreigners in certain circumstances to come to the Alpine country and seek doctors' help in ending their lives. Detractors say Germans account for up to half of this so-called "suicide tourism."

The Belgian Parliament earlier this year passed a bill allowing euthanasia for terminally ill children without any age limit, making it the first country to permit the practice for children under 12.

Michael Brand, who is coordinating the CDU and its allies' efforts on the ban in the German Parliament, says what the Belgians did amounts to "declaring their society bankrupt."

"We aren't fundamentalists, but rather are looking for a modern and humane answer for ... the most difficult question," he says.

A Sensitive Question In Germany

Brand adds that the question of assisted suicide is particularly sensitive in Germany because of his country's Nazi history and the Holocaust.

"We live in a society where everyone today is productive, fit and healthy," Brand says. "We need to be careful not to put pressure on those who are nearing the end of their lives, who are sicker, who are disabled. Who has the right to decide what life is worth living or not?"

Christian Arnold, a retired German urologist who says he has assisted scores of terminally ill Germans seeking euthanasia, says that patients — and not the government — should be making that decision.

"We have a constitution that guarantees the right to live and the right to die," he says.

Arnold adds that he and other doctors offer the patient seeking euthanasia a variety of alternatives, including palliative or hospice care, pain management through medication and other therapies. But if, after everything, they still choose help in killing themselves, then their wishes must be respected, he says.

Elke Baezner, who is president of the German Society for Humane Dying, agrees. She says that she understands politicians' desires to protect vulnerable patients from unscrupulous individuals or groups seeking to take their money, but that dragging out patients' care against their will at great expense is also abuse.

"Our goal is to find a safe, secure way for people who want to die to be able to do so peacefully and without pain," Baezner says.

Daniel — the psychologist with multiple sclerosis — says he's following the debate in his country with trepidation, but that, ban or not, it won't change his resolve. He has planned every detail of his final hours, which he has decided will come when he can no longer see or speak.

He says he will put on a soundtrack from a favorite movie — he doesn't know which one yet, but it will be one featuring American actor Jeff Bridges — and sit on his living room couch with his girlfriend at his side.

Daniel's last act will be to lift a glass containing a barbiturate he has purchased online, drink the concoction and drift off to sleep.

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DAVID GREENE, HOST:

The next story turns from the question of whether a sick patient should keep fighting to whether they should be able to end their life. In Europe, many countries are struggling with whether doctors should be allowed to help in that process. Some like Belgium are making it easier. Parliament there approved euthanasia as an option for terminally ill children earlier this year. In Germany officials are considering what many fear could effectively be a ban on assisted suicide. We should warn you that you are about to hear some pretty graphic descriptions. Here's NPR's Soraya Sarhaddi Nelson.

SORAYA SARHADDI NELSON, BYLINE: For Stefan Daniel, the hardest part of living with multiple sclerosis is losing control. The clinical psychologist who is a former runner, is confined to a electric wheelchair. His hands shake and arms lurch uncontrollably. And he's completely reliant on caretakers like this young man...

UNIDENTIFIED MAN: (Speaking German).

NELSON: ...Who heads out the door to pick up Daniel's prescriptions. Daniel, who struggles to speak, says his helpers come four times a day.

STEFAN DANIEL: They clean my apartment, they are cooking and they're taking me out of bed in the morning.

NELSON: But the 51-year-old rarely leaves his ground-floor flat anymore.

DANIEL: I like to go outside, but it's so difficult for me to open the doors. You've seen my shivering or shaking, and it makes it so difficult and I have to be inside.

NELSON: Daniel says he's accepted that his symptoms will only get worse. But he says there is one thing he won't give up to the disease, the choice of how and when he will die. Daniel is one of many German patients who are turning to doctors for help with committing suicide. Experts and officials here say it could be hundreds or thousands. No one knows for sure. When asked how he feels about his choice, Daniel smiles for the first time during our interview.

DANIEL: Only one word is in me - freedom. I don't have to think about how I will end my life.

NELSON: He's being advised by his friend, Christian Arnold, a retired urologist. Arnold has been dubbed Doctor death by some German media because of this public advocacy for assisted suicide. Not just for terminally ill patients but for those like Daniel. He estimates he's helped a couple hundred patients end their lives.

CHRISTIAN ARNOLD: So I had experience and I can accept the wish of a patient very easily. I think as a doctor it's my duty to go along with a patient and help him.

NELSON: Dr. Arnold says he always tells patients about alternatives like palliative care and pain management. But in the end it's up to them.

ARNOLD: Suicide and assisting suicide is not punishable in Germany. So everybody can do it.

NELSON: Nevertheless, it remains a murky legal question here. Killing terminally ill patients directly, even if requested is illegal. But prescribing certain drugs to terminally ill patients and then letting them ingest or inject those medications is allowed. Germany's main medical board overseeing doctors opposes assisted suicide. But German courts have sided with doctors. This fall, Chancellor Angela Merkel's government is planning a nation-wide debate on assisted suicide. Her Christian Democratic Union political party has vowed to stop organizations and doctors it claims are profiting from vulnerable patients seeking to kill themselves. Michael Brand is coordinating the CDU's effort on the ban.

MICHAEL BRAND: (Speaking German).

NELSON: He says, we aren't fundamentalist but are looking for a modern and humane answer for the most difficult question. He adds he's mainly going after doctors who have turned assisted suicide into a moneymaking venture. Elke Baezner, who heads the German Society for Humane Dying, says she understands the political desire to protect vulnerable patients but dredging out their care against their will and at great expense, is also abuse she says.

ELKE BAEZNER: (Speaking German).

NELSON: She says, our goal is to find a safe secure way for people who want to die, to be able to do so peacefully and without pain. She, like many German advocates of assisted suicide, fears what Germany will end up with as a de facto ban on assisted suicide. The ailing Daniel says he's following the debate anxiously. He has planned every detail of his final hours. Which he has decided will come when he can no longer see or speak.

DANIEL: I'm worried right now. You understand, I can't lie in the bed and die. I want to sit and die.

NELSON: He says he will sit on his living room couch with his girlfriend at his side, while they listen to a soundtrack from a movie he'll pick out, featuring his favorite American actor Jeff Bridges. Daniel's last act will be to lift a glass containing a barbiturate he has purchased online, drink the concoction and drift off to sleep. Soraya Sarhaddi Nelson, NPR News, Berlin. Transcript provided by NPR, Copyright NPR.