The Case of Archie (12): When the Courts Decide Our Children’s Lives

Dramatic scenes take place in London: the boy Archie (12) has been in a coma since April and is now brain dead. He suffered serious brain damage in an accident at home in Southend-on-Sea, possibly during an internet trip. The doctors who treated him found him brain dead and therefore see no chance of recovery – they want to end life-sustaining measures. His parents, Hollie and Paul, are fighting to keep them.

What is the Archie case about?

The parents want the 12-year-old to be taken to a hospice to die and filed an application to this effect at the High Court in London on Thursday. However, the treating hospital appealed. If granted, the machines that keep him alive must be shut down.

The parents had until 9:00 a.m. to file an appeal against the hospital’s decision, clinic operator Barts Health NHS Trust announced late Wednesday evening in London. Otherwise, life-sustaining measures would be discontinued at 11 a.m. The parents are struggling at the moment

For the UK’s highest court to decide how to proceed may sound strange in this country. In England there have already been several such cases in the past where life-sustaining measures were terminated: for example Alfie (2), for whose treatment even Pope Francis campaigned.

Official guidelines for paediatricians in the UK state that if there is no chance of recovery for a patient and it will only prolong the child’s suffering, the machines can be turned off.

Life-saving measures: “England knits differently”

“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 the courts, on the recommendation of doctors, decide what is in the best interest of the patients. These include severely neurologically damaged and thus debilitated patients where recovery of 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 damaged. The doctor explains that this can be tested reliably. If patients are demonstrably no longer able to lead a life worth living, life-sustaining measures must not be prolonged. For example, when a self-determined, happy, pain-free or fulfilled life is no longer possible.

This is currently also the case with Archie: he is currently only being kept alive by a machine that breathes for him. According to “Sky News”, the doctors have proven brain death – and therefore consider an end to the measures as appropriate. You would be following official guidelines by doing so. Children are often escorted through a rehabilitation center in their final days. In England, the extremely expensive treatment with life-saving machines that, for example, take over the ventilation for the patients, is not planned in the long term, according to Haas.

This is how Germany handles such cases

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 the time, it was about a seriously ill young child, the boy Alfie (2). Dealing with parents who find themselves in a similarly hopeless situation is not easy for doctors either: “How do you deal with severely disabled children who are dependent on devices, but you still want to enable them to live a socially acceptable life life?” when patients who are dependent on care after a serious accident or illness and can no longer interact with their surroundings.

In Germany, according to Haas, you don’t just have to 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 constitution and ultimately also rooted in Germany’s past: during the Nazi era, the National Socialists systematically murdered people they classified as “not worth living” through euthanasia programs. Because of this, life and death decisions cannot be made lightly 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 handling such serious cases,” he continues.

In principle, decisions are always made in teams in Germany. This means that parents must be involved. “When dealing with severely disabled patients who are dependent on life-sustaining measures, there must always be a common way to bridge this time until irreversible brain damage or death,” says Haas. Usually, even in these difficult situations, parents are open to arguments to find a solution acceptable to all.

When parents in Germany adhere to life-sustaining measures

But even for parents who still adhere to life-sustaining measures, a sensible path must be found, explains the pediatric cardiologist. This is often linked to unconscious feelings of guilt, for example if the child had an accident and suffered serious brain damage as a result. “It is often precisely in such situations that the parents need time to process this and take this step and 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 disabled by illness or accidents and who have little chance of recovery are often cared for in rehabilitation facilities, explains the pediatric intensive care physician. This includes neurological rehabilitation, but also care services or later possibly special palliative 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 on then, after a period of close contact with their children, realize that there is nothing more they can do and develop an inner will to let the child go.”

This extremely expensive form of treatment is covered by health insurance in Germany. It is widely accepted that this is also carried out outside hospitals and care facilities. In England, however, this is not planned and also impossible for normal patients. The UK’s National Health Services (NHS) is funded entirely by taxes and is under great pressure. As a result, the NHS tends to withdraw life support much more quickly.

“Well-trained network of palliative medicine”

According to the head of pediatric intensive care, Germany has a “well-trained network of palliative medicine.” Seriously ill and disabled people with a short life expectancy should be accompanied and supported as long as possible to live fulfilling and happy lives with their families.

One such palliative care center is the palliative children’s 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 indeed clear that maximum therapy, such as resuscitation measures, is not what the families want and is therefore not carried out. But together with the very dedicated palliative care professionals, we have found excellent ways to deal with these children.”

Archie’s parents had even lodged a final appeal with the European Court of Human Rights in Strasbourg – but the latter refused to intervene on Wednesday night. Archie’s mother, Hollie, was devastated. “This is the end,” she told reporters in London. Now they hope he can at least be transferred to a hospice.

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