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Wednesday, April 25, 2018

Top German paediatrician finds outcome of Alfie Evans case completely incomprehensible

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Article which has just appeared in Die Welt- the top German newspaper.  They interview Professor Haas who is the head of the Child Cardiology and Paediatric Intensive Medicine Unit at Munich University Hospital.  He says what is happening would be totally unacceptable in Germany given the history of Nazi times.

Alfie Evans is sick. He's wrestling with death. The parents want to treat him with the help of German doctors, but they are not allowed to. Intensive care physician, Nikolaus Haas explains why the case makes him angry.

The little Alfie Evans has a serious illness, he struggles with death. His parents want to have him treated outside the UK, but they cannot. The clinic has gone to court against them and got a judgement in their favour. German doctors are also involved in the case. Professor Nikolaus Haas personally examined Alfie, he knows the medical history and has also prepared a report for the trial.

WELT: Professor Haas, you have contact with the parents of Alfie Evans. How did that happen?
Nikolaus Haas: The family or the lawyer team contacted us, and the court has appointed me as a reviewer. The doctors had told them that they in England did not want to do anything for their child and end the life-support measures. Also a transport to another hospital was forbidden to the parents, on the grounds that the child was too sick and this would endanger the child. They then searched for an intensive care service and found us and my senior physician Matthias Hübner, who offers to fly children of all ages in the company of a doctor specialising in pediatric intensive medicine and two sisters appropriately trained in paediatric intensive nursing throughout the Welt

WELT: Do not the British have such a service?
Haas: Yes. But they do not want the family to use it.

WELT: Why not?
Haas: That's a question of the system ... But in turn. The family then asked Mr. Hübner to see Alfie to see if he is transportable.

WELT: The British doctors were obviously not impressed by the colleague from Germany ...?
Haas: The hospital said quite openly, we do not want another doctor to look at the child. The family then said that we bring Mr. Hübner as a friend. It was like that in the end. He introduced himself as a doctor but the local team refused to speak with him. He then examined the child and took a look at the medical documents that are available to the parents themselves.

WELT: That's enough?
Haas: But surely. As an experienced pediatric intensive care physician, they do not need to read long files. You just look, is that a stable patient, yes or no. Alfie Evans was completely stable then, and also when I looked at the child. Alfie was correctly ventilated, he did not move, had seizures only occasionally. Mr Hübner then confirmed in writing that this child is fit to fly. Of course, that did not suit the hospital at all.

WELT: Why not?
Haas: Well, the colleagues say yes, this kid is so sick, it cannot be flown anywhere, that's too dangerous. Mr. Hübner then asked, so where can the child be treated? There was the connection to Italy to a children's clinic in the grounds of the Vatican. Even their doctors had examined Alfie. But these colleagues have also said that he may be too ill for transport.

WELT: How did it continue?
Haas: We also had a ready concept in consultation with Alfie's team to bring him to Munich. There he should be temporarily cared for. Thereafter, it was planned to send him to a nursing home in Poland for further care. But then the clinic said no and complained. Emotions were raised. Even the Pope has joined in, Alfie was offered Italian citizenship. In vain. And now a judge says after the completion of the respiration: You may go home, but not leave the country to have the child treated elsewhere, at your own expense? That's crazy!

WELT: How would Alfie be treated in Germany?
Haas: That's clear: if you have a child that is medically balanced, you still have to take care of these patients. We say that these patients should not lie in the intensive care unit, but should be optimally cared for. For example, in a facility or at home, depending on how the parents wish or are able.

WELT: How difficult is that?
Haas: For the patients who cannot breathe enough themselves, a respiratory aid must be made possible. In addition, the diet must be ensured, especially if patients cannot swallow. And it must be ensured that medicines can be supplied, usually via a nasogastric tube. All this is standard. Every major children's hospital has about a dozen such children who are severely handicapped and then cared for in the nursing home or at home. Total routine. In Germany, Alfie would have been at home for a year with such care!

WELT: But?
Haas: The English health system does not want that. Why not? I can only speculate, but as I understand it, the National Health Service is the sacred cow in England. The doctors say that what we do is right, period. And of course, such a treatment of an intensive care patient outside the clinic is about three times as expensive as in the clinic. When they set a precedent, they unleash an avalanche that costs a considerable amount of money.

WELT: Is that the only problem?
Haas: No, because now we come to the system question. For the trial before the Court of Appeal, where the hospital wanted to prevail, I had to give an opinion. There, I have allowed myself to write as an explanation for our management in Germany: We have learned in Germany because of our history, that there are things that you do not do with severely disabled patients. A society must be able to care for these patients equally and not decide to end life-support measures against the explicit desire of the family. But this was perceived as an inappropriate and rebellious, purely personal opinion. It was said that it did not matter.

"One is not so alone then"

WELT: It is not the first case in the UK - the late Charlie Gard had a similar fate.
Haas: Charlie's diagnosis was clear. He had a disease in which the energy building blocks of each cell were broken. No treatment had a chance of success, the child was brain dead, so to speak. Alfie is anything but brain dead. Yes, he is severely handicapped, he has a condition which one does not know exactly what it is. In any case, it is a so-called neurodegenerative disease, where the brain becomes ill over time and gradually perishes.

WELT: Could Alfie do better than British doctors say?
Haas: No. And there is probably no treatment that can cure Alfie. The question is, how do you deal with it at the end of your life? And nobody knows how long he can live. He could live at home for half a year, with appropriate support, maybe shorter, maybe longer. In Germany - but also in other countries of the Welt - we would now say: "How it goes further with him, is also a personal decision of the family." If the parents say we want the other way and also the dying process of the child at home then a society must be able to enable and accept that. Especially if you say we have nothing to offer you.

WELT: Nevertheless, there are examples where the best interests of the child would really be endangered by parents' decisions, right?
Haas: Yes. For example, if the parents are Jehovah's Witnesses and reject a blood transfusion, for example. Or if you have children with leukaemia and you want to treat the disease with homeopathy. Then you have to deprive the parents of custody, because there is a good treatment for the child. The state has to intervene, for the benefit of the child. But in England, in this particular case, the system says we're always right, and it's better for that child to die than for someone else to take care of the child. This is not understandable for me.

WELT: Too much rationality, too little ethics?
Haas: Difficult question. For that I know the system too little. However, this National Health Service system is apparently so unquestioned that no second opinion is allowed. If you want to get a different opinion in Germany with another doctor, one does not complain as a clinic and say death is reasonable. That's completely irrational! Again, there is no cure for this child in my view. But the remaining time must be managed reasonably. The child does not suffer, after all, from what I know and have seen. Interestingly, the colleagues say - and this is also the view of the judge - that the patient is in a neuro-vegetative status. This means that he gets nothing from his environment and has no pain. Where is the logic? If he is not in pain, what can you do wrong?

WELT: The machines are now switched off. But Alfie did not die, Alfie breathes. Could it torment him?
Haas: This is unlikely because his brain has been severely damaged by the confirmed investigations. But you can not be 100 percent sure. Breathing itself is a pure brain function without emotions. But beware: Just because Alfie is breathing does not mean that the brain has recovered. Of course, the cerebrum continues to be massively damaged.

WELT: Is the paediatric medicine of British colleagues worse than those in Germany?
Haas: No. The English make that outstanding. But when dealing with some severely disabled people, they obviously have a different approach. Our ethical understanding in Germany is different, I mean - thank God. The logic that it is better for the child to die than that someone else looks at it, and even to sue in court: This is an unimaginable behaviour for me.

WELT: But surely there's reasons for that to happen, right?
Haas: Well. The National Health Service and the judges are in my opinion both parts of a self-contained system. If this case changed, the system would have a significant problem. Because then a precedent is created, and other relatives could complain or try to follow a similar path.

WELT: That leads to absurd situations, right?
Haas: Exactly. I met another handicapped child in the same hospital in England, a girl, about 18 years old. She actually been in hospital since the beginning of his life. She gets air through a tracheotomy and is artificially ventilated and nourished. According to his father, however, she may not leave the hospital permanently. The doctors told the parents: If you take this child with you and there are problems then we will not treat this child here in the hospital anymore. The parents of this patient are now well trained. They can take care of the child, they drive with him through Liverpool, even go shopping with their daughter. But they cannot go home. It certainly relates to the cost. Home care is about three times more expensive than one in the hospital.

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