When Carola Nacke (56) went to the German Constitutional Court to demonstrate that the life of her adult son Cornelius is full, she brought a large folder of evidence with her. It contains not only information about Cornelius’ disability and medical condition, but also testimonials from his rowing machine, his sports teacher and the local senior club where Carola is a volunteer. They stated that Cornelius would be missed as a ‘member of the community’ and that he has ‘life value’.
‘To show that it is important that he lives on’, says Nacke. She pauses, takes a deep breath, and takes a sip of her latte macchiato. ‘That was drastic. Triage is something for wartime. Suddenly I wasn’t sure anymore whether Cornelius would be treated if he arrived at a full IC ward with Covid-19 or whether people would say: I’m sorry, but you only get palliative care.’
Cornelius (24) is crazy about animal books, race tracks and the German folk music band Santiano, who provides sea shanties with a modern pop jacket. He works as an assistant in a catering kitchen on the edge of a business park in Dresden. Cornelius also has a special form of Down syndrome and can hardly read or write due to lack of oxygen at birth.
When Nacke heard the word triage over and over at the start of the corona epidemic, she thought: I’m going to see what the guidelines are for this. She was shocked.
The guidelines, drawn up by the German Association of Intensivists (DIVI), end with a decision tree in which patients with pre-existing conditions that ‘significantly reduce’ the chance of successful IC treatment are excluded from treatment. Examples are severe organ dysfunction or advanced neurological diseases. The ‘general health status’ must also be determined by looking at any increased frailty, for example through the Clinical Frailty Scale (CFS).
My Gott, thought Nacke. This can not be true.
Because there it was, she says in a busy company canteen near her son’s workplace. Black on white: the more help people need in everyday life, the worse they score on the scale. This score partly determines their chance of survival during treatment and therefore their chance of a treatment as such.
Therefore, in July 2020, Nacke, with eight others, joined a gang to the Constitutional Court in Karlsruhe, the ultimate judicial authority in Germany. The legal process was the idea of the disabled activist and lawyer Nancy Poser (42) from Trier, herself a judge and wheelchair-bound by the muscle disease SMA. Among the nine complainants are also a well-known disability activist with brittle bone disease and the mother of a son with multiple disabilities. Their request: protect us.
It became a remarkable judicial process, all the more so because people usually turn to the judges in Karlsruhe with objections to a law or decision. Now it was about objection to the lack of a law or decision. In addition, the Court can refuse cases without reason, which it does in most cases. But soon there was the first surprise: Karlsruhe went to look into the matter.
DIVI, meanwhile, went out of its way to convince the public that doctors don’t make triage decisions based on age, physical disability or existing disease. The constitution states that every person has the right to life and that no one should be disadvantaged because of his disability. But the complainants were not reassured, given the triage guidance that can be found online. In addition, Nacke says, “this is not a decision for physicians. This is a social-ethical issue that we as a society have to answer together.’
Then suddenly came the second surprise on December 28 last year: the judges in Karlsruhe agreed with the complainants. The Court ordered the government in Berlin to ‘immediately’ enact legislation protecting the lives of people with disabilities and/or chronic illness in the event of triage. The battle is not over yet: the government is faced with the difficult task of drawing up guidelines that make triage possible, while all patients have an equal right to (survival) life.
The trial of the nine in Germany has given impetus to a sensitive ethical discussion – who knows, it may be a crossroads for other countries. For Nacke, the Court’s ruling is already a victory.
Cornelius has now also joined, having finished his shift in the kitchen and now bent over a schnitzel with potatoes and broccoli in a generous bath of gravy. Nacke cannot explain the course of the case at the Constitutional Court, she says. So when the good news came on December 28, he got a big kiss “and a huge ice cream.” He was overjoyed.