12-year-old Archie Battersbee from Great Britain is dead. Until the very end, the parents argued in court whether he should be allowed to die in the hospice – or whether the life-support measures in the hospital should be ended. How would we deal with such a situation in Germany?
Dramatic scenes took place in London: the boy Archie (12) had been in a coma since April and was brain dead. Now his life support has been switched off, Archie died on Saturday.
He suffered serious brain injuries in an accident at home in Southend-on-Sea, possibly during an internet dare. The doctors treating him proved brain death and therefore saw no chance of recovery – they want to end the life-sustaining measures. His parents, Hollie and Paul, fought to keep them.
Archie’s parents wanted the 12-year-old to be taken to a hospice to die and made an application to the High Court in London. Not a crowded, sterile hospital room, but a quiet, peaceful environment, they wished him in the last minutes of his life.
But in court there was a final defeat for the parents. The family was not allowed to take the boy to a hospice. The court reasoned that his condition was not stable enough for transport. “Archie is in such an unstable condition that there is a significant risk even if he is turned inside his hospital bed, which must be done as part of his ongoing care,” the clinic operator previously said.
The fact that the highest British court decides how to proceed may sound strange in this country. In England there have already been several such cases in the past, in which life-sustaining measures were ended: for example Alfie (2), for whose treatment even Pope Francis had campaigned.
Official guidelines for paediatricians in the UK state that if there is no chance of recovery for a patient and it would only prolong the child’s suffering, the machines may be turned off.
“England is knitted differently,” says Nikolaus Haas, head of pediatric intensive care at the Hauner Children’s Clinic at the LMU Clinic in Großhadern, in an interview with FOCUS online. There it is quite possible that courts decide on the recommendation of medical professionals what is in the best interests of the patients. These include severely neurologically damaged and thus impaired patients, in whom recovery of a brain function that is still minimal is unlikely.
According to Haas, however, people who are brain dead cannot be expected to wake up again because the brain is irrevocably destroyed. The doctor explains that this can be reliably tested. If patients are demonstrably no longer able to live a life worth living, life-sustaining measures may not be extended either. For example, when a self-determined, happy, pain-free or fulfilled life is no longer possible.
This was also the case with Archie: he was only kept alive by a machine breathing for him. They followed the official guidelines. Children are often escorted through a rehabilitation facility on their final days. In England, according to Haas, the extremely expensive treatment with life-support machines, which, for example, take over the ventilation for the patients, is not planned in the long term.
Such cases are handled very differently in Germany, explains Haas. The doctor appeared in court as an expert witness in a similar case a few years ago. At that time it was about a seriously ill toddler, the boy Alfie (2). Dealing with parents who find themselves in a similarly hopeless situation is also not easy for doctors: “How do you deal with it when severely disabled children are dependent on apparatus, but you still want to enable them to live a socially acceptable life?” So when patients who are dependent on care after a serious accident or illness and can no longer interact with their outside world.
In Germany, according to Haas, you shouldn’t just legally decide that a patient is no longer living a life worth living and then turn off the machines. This idea is enshrined in the Basic Law and ultimately also rooted in Germany’s past: During the Nazi era, the National Socialists systematically murdered people they classified as “unworthy of life” through euthanasia programs. Because of this, one cannot make light-hearted decisions about life and death in Germany today.
“I also said that as an expert in the Alfie case in court: Because of our past, we therefore have a different way of dealing with such serious cases,” he continues.
In principle, decisions are always made in teams in Germany. That means you have to involve the parents. “In the case of severely disabled patients who are dependent on life-sustaining measures, a common way must always be found how to bridge this time until irreversible brain damage or death,” says Haas. Normally, even in these difficult situations, parents are open to arguments in order to find a solution that is tolerable for everyone.
But even for parents who still stick to life-sustaining measures, a reasonable way must be found, explains the pediatric cardiologist. This is often related to unconscious feelings of guilt, for example if the child suffered an accident and severe brain damage as a result. “It is often precisely in such situations that the parents need time to process this and to take this step and to see that it is a hopeless situation and also and especially for the patient no longer a fulfilled, self-determined existence”, says haas
Children who are severely neurologically handicapped by illnesses or accidents and who have little chance of improvement are often cared for in rehabilitation facilities, explains the pediatric intensive care physician. This includes neurological rehabilitation, but also care facilities or later possibly special palliative care centers for children.
There they are stabilized and prepared so that they can also be cared for at home with the family. “You then have an intensive care unit at home, together with medical staff,” he says. “Most parents who take it upon themselves then, after a period of close contact with their children, realize that there is really nothing more they can do and they develop an inner willingness to let the child go.”
This extremely expensive form of treatment is covered by health insurance in Germany. It is generally accepted that this is also carried out outside of hospitals and care facilities. In England, however, this is not planned and also impossible for normal patients. The British health service “National Health Services” (NHS) is only financed by taxes and is under a lot of pressure. As a result, the NHS tend to withdraw life support much sooner.
According to the head of pediatric intensive care, Germany has a “well-trained network of palliative care.” Seriously ill and disabled people with a short life expectancy should be accompanied and supported as long as possible in leading a fulfilling and happy life together with their families.
One such palliative care center is the children’s palliative care department at the Ludwig Maximilian University Hospital in Munich. Nikolaus Haas regularly treats patients from this department there: “These children with acute problems often come to us in the intensive care unit, where it is actually clear that maximum therapy, such as resuscitation measures, is not what the families want and therefore is not not be carried out. But together with the very dedicated palliative care professionals, we have found excellent ways of dealing with these children.”
Archie’s parents had even made a final appeal to the European Court of Human Rights in Strasbourg – but the latter refused to intervene in the case on Wednesday evening. Archie’s mother, Hollie, was heartbroken. “This is the end,” she told reporters in London afterwards.
