Ways To Remove Stuff That Doesn’t Belong in Brains

There has been a lot of news about young Ashya King recently, he had something in his brain that didn’t belong there. So did my daughter a few years ago, I haven’t written about that much, however the recent events have brought a lot of stuff back to mind and maybe it is time to write about it a bit. I happen to know a bit about some laws and court procedures, and a little about hospitals and brains and a reasonable amount about particle physics. This episode maps onto a sweet spot of intersecting topics I don’t really need to know about and things I never wanted to know about. I am not qualified, nothing is advice, but I will try and explain a few things to the best of my understanding. There has been a lot of misinformation and misunderstanding floating about on the interwebs, it has been very much an everyone on the internet is wrong kind of time. I may try and update this as things get clearer, it might be a bit rambling and unordered, bouncing about between medical and legal stuff interspersed with the events of the week and the past. I will try to start out with a bit of a story.

Ashya King had something in his brain that shouldn’t be there. An expanding lump of tissue at the back that wasn’t brain. That isn’t good. It is pretty much exactly where the lump of not good stuff was in my daughter’s brain. The surgeon described the operation to us as being like cracking an egg on the table and then picking up the yolk with a knife and fork and not breaking the yolk or damaging the white. It is important to cleanly remove the lump, so you hope it has nice well defined edges and the bit that isn’t brain doesn’t blend into the bit that is brain. My daughter had a large, but well defined lump of stuff that turned out to be not cancerous when they tested the removed stuff. Ashya was more unfortunate. Ashya had the initial operation to remove the tumor then a further operation of some kind which might have been a very small op in theatre to remove a shunt (tube through the skull that drains excess fluid and maintains the correct pressure in the skull). The operation and biopsy would have revealed that it was a nasty lump. Grade 4 level of nasty on a scale of 1 to 4. That is bad, it is a spreading cancer rather than something that just grows. With that kind of situation just removing the great big lump is not enough. You have to kill the little bits that are left, burn the edges of the hole and poison anything you can’t find. This is therapy. It is poisoning and blasting cancer. Cancer is alive, just like the patient and can be killed, just like the patient. The idea is you poison both the cancer and the patient and blast the cancer and the patient with radiation, but you do it carefully so that you try and kill the cancer a bit quicker than you kill the patient. Once the cancer is properly dead, you can stop trying to kill the patient and hope they recover. You don’t want to start this with a patient who is weaker than the cancer is, because it is a race that you want the patient to win. After the surgical operation there is a period of recovery for the patient to build up strength before the poisoning starts. My daughter didn’t need therapy, but I found out quite a lot about it at the time by doing my own research. Right now Ashya is at the end of that recovery period and is about to start therapy. His dad did a lot of research too. Brett King found out about Proton Beam therapy (which I didn’t find out about in my research, it was even rarer at that time).

Proton Beam therapy is pretty cool, you will see pictures of a shiny clean room with what is quite clearly a Stargate in it all looking high tech.

Why can’t they get one of these cool things installed in every hospital? Well there is a reason for that. The shiny room has got a great big cyclotron particle accelerator in the room behind it (and above and below it). These pictures and diagrams from Penn Medicine might give you a sense of the scale. Unlike in Oz, looking behind the curtain reveals something surprisingly impressive.

Regular radio therapy blasts x-rays through your head (or wherever might need irradiating) These go straight through and burn stuff, kind of like a penetrating laser beam, but way more energetic. They try and focus it on the bad stuff and miss as much of the good stuff as possible, and it works. Really quite well. Radio therapy is very effective. Combined with chemotherapy (that is the chemical poisons that poison the cancer a bit more than the patient) it is even more effective. Proton Beam therapy uses particles rather than photons, if you remember school stuff, x-rays are basically gamma radiation (low energy end of gamma radiation), so we know about them. Alpha radiation is helium without the electrons (a bundle of 2 protons and 2 neutrons). Beta radiation is just electrons. So what on earth is a proton beam? Well that isn’t in the school books, it is hydrogen with the electron stripped off, so just single protons. These are charged particles so they can be pushed by magnetism. Stick them in a vacuum tube and push them a lot and they go fast. Let them out and point them at a person they will go clean through the first few cm and then hit something with a bit of a thump and stop, scattering the energy that it had and doing damage. This allows fairly good targeting, you can focus it in x, y and z directions. The photons don’t stop, you point them in x and y but the depth is less controllable. So protons and photons both do a bit of useful targeted internal damage. Sometimes the extra accuracy of protons that stop might give a better clinical outcome. Sometimes it might make no difference. There isn’t really a lot of solid evidence either way. We figure out if something is a good treatment by doing clinical trials, you can do retrospective trials (look at people who have had it) or the gold standard of trials, the randomised clinical trial, where you take people who are going to have treatment and randomly assign them to a treatment. Unfortunately there are pesky medical ethics getting in the way of the science as it would be ethically unacceptable to randomly pick a therapy for an individual when it is something so serious, which is a bit of a shame, because it would also be good to do better science on something so serious. Bottom line is that it is a good treatment, arguably better than radio therapy (xrays) for some situations. It is certainly not a cheap therapy though, is any added benefit cost effective? Nobody knows. Would it be a better treatment for Ashya King? The oncologists in Southampton didn’t think so, and they might be right (they know a lot about the patient in front of them). The oncologists in Prague think it would be good, they might be right (they know a lot about what their Stargate can do). It is a reasonable difference of opinion, we are not in the situation of comparing a real treatment against urine therapy or theta healing or any other form of cancer curing woo.

Brain surgery is complicated stuff (it isn’t rocket science though) and people react to it in odd ways and recover from it in odd ways. You probably saw the video of Ashya and Brett King, Ashya was a bit unresponsive, and using a feeding tube. That isn’t uncommon and isn’t necessarily permanent. After a traumatic brain event (and someone breaking and entering the skull and then scooping out the yolk without damaging the white is pretty traumatic) it takes a while to recover, but stuff does come back. Maybe a little, maybe a lot. You don’t know what will come back until it does, and then you never know what might have been different. Personality, behavior, ability in music, maths, sports etc. Is it what it would have been anyway, or better or worse? Is any particular change recovery or is it just growing up? You don’t know for certain, and neither do the doctors. It is a bit clearer on an adult as you have a baseline to compare against, changes can be attributed to the intervention and recovery. Children are expected to change dramatically over time anyway, so attributing cause to the effect is harder.

Back to that feeding tube for a minute. It is a tube that goes through the nose and into the stomach. It has a machine with a rotating part in it that kind of squeezes the tube and slowly pushes the food along, it pumps it from outside the tube. The one Ashya is using is a Nutricia Flocare Infinity it takes a 5vDC supply, pretty standard stuff, you could get a generic power supply for it at any electrical store, if you don’t already have a drawer full of the things at home. A power supply for it is not hard to come by. It has an internal rechargeable power pack, there is no “spare batteries” about it. Any media report you see that talks about spare batteries is just lazy journalism. It has an internal lithium ion battery that is good for 24 hours at a flow rate of 125ml/hour. Now what happens after that? You don’t drop dead, any more than you drop dead when you finish eating a meal. It isn’t a breathing tube, it is an eating tube. If it stops then after a few hours you might start to get hungry. After a day or so you would be quite distressed about it. After that you start to suffer starvation, it takes a surprisingly long time to die from it, and it would be hard to watch. Being in a weak state would speed things up, being in an inactive state would slow it down. I have no idea what that adds up to, but it certainly isn’t an instant catastrophe when the batteries run out. The initial reports given by the hospital to the police and media were very much stressing the battery life and strongly implying that time was running out, and that it would be fatal after 24 hours. Some people had other concerns. Would they be able to keep it sterile? Well it needs to be clean, not sterile (some bits probably get sterilised in hospitals). It needs to be clean as a plate that you would eat off, because that is what it is. A delivery system for food. Some kids have these long term and they are designed to be portable, there are backpacks for them, search for tubie backpacks and you will find lots. There are real risks with feeding tubes. Reinserting them can go wrong, put it in the lung rather than stomach and that is dangerous, best not done without training. Vomiting would be a risk without a swallow or cough reflex as it would be harder than normal to clear. Seasickness and carsickness would be a bit of a worry, batteries, not so much.

On Thursday 28th August at 2:15pm Ashya Kings parents left the Southampton General Hospital. Brett King was pushing Ashya in a buggy. They had decided to leave, travel to Spain, sell their apartment and spend the cash on Proton Beam therapy in Prague.

Six hours later, at around 8:35pm the hospital alerted the police, by this time the King family were getting off a ferry in Cherbourg. The police went into full child protection emergency mode, applied for an arrest warrant at some time on Friday and upgraded it to a European arrest warrant. The hospital separately asked Portsmouth Council to apply to the high court to have Ashya made a ward of court on the Friday, the police would not be involved in that to any great extent. The court approved the ward of court order, which meant that from the moment it was raised (not approved, it is effective from the time of raising though this doesn’t matter much in this instance, just a legal oddity) the high court took on parental responsibility for Ashya. On Saturday night, they were found in Spain, Brett King recorded a video which was posted to YouTube showing that Ashya was fine, the feeding machine was plugged in and working and they had plenty of food and they had a plan to obtain treatment. They were then arrested, handcuffed, moved to Madrid, appeared in court on Monday and were remanded in custody pending a bail decision. Bit harsh really.

Some people were a bit surprised and shocked that a family would walk out of a hospital like that. Was it reckless? Was it a risk? Well yes, but you calculate risks and benefits and consequences a bit differently in that situation. You are perfectly rational, but consequences that don’t get in the way of your immediate objectives are utterly irrelevant to your decision making process. It is a bit hard to explain to people who haven’t been in that situation, but imagine you are in the middle of nowhere, no phone, no means of raising the alarm, you are with a child who suddenly needs to get to a hospital fast (make up your own reason here). In front of you is a car with the keys left in the ignition, you don’t know who it belongs to. You take the car and achieve your immediate objective. Taking the car was wrong, there will be consequences. They could be quite severe, but as you get to face them later, after you have achieved your objective, the consequences don’t matter much. You don’t want to avoid the consequences, just face up to them on your own terms afterwards.

Under those circumstances, selling the apartment and spending £100,000 falls into the easy instant decision category of things to do. Walking out of the hospital without filling in the self discharge against medical advice form was always likely to have consequences at some stage. Remember who pushed the buggy out of the door? I am guessing that wasn’t an accident, that was taking ownership for the decision and the eventual consequences. As it happens the consequences of that caught up with them a lot faster than expected and were a lot more severe than expected. Big miscalculation there. The rest of the plan was meticulous.

The overall effect of the response was an epic failure. Everyone knew on Saturday night that it should no longer be a police matter. It was appropriate to find them, it was appropriate that the police were involved in doing that. The ward of court bit isn’t as harmful as some people make out, but it contributed to a further error later. It was appropriate that Ashya was taken to a hospital. It then should not have been a policing matter. It was downright horrific that they were in custody until Tuesday night.

The problem was that the UK police had no jurisdiction in Spain (obviously) and thought they had no way to ask the Spanish police to lift a finger without the European Arrest Warrant so they asked the Crown Prosecution Service to upgrade an arrest warrant to European Arrest Warrant. The EAW is only for situations where a prosecution is intended, they are designed to be only for serious matters, created in 2002 as a response to the threat from international terrorism. They can only be used for offences that can have at least a 12 month prison sentence and can’t be used to investigate something, only for an offence where there is an intent to prosecute.

When the Crown Prosecution Service starts considering whether to do something about an offence they use one of two different tests, full code or the threshold test. To oversimplify things, the full code is for situations where they think they have an investigated case that could go to court, threshold is for situations where they think that they could go to court if more evidence arrives that they expect will arrive. They used the threshold test and issued the warrant. They can just do that for a domestic warrant, however the EAW is a bit different. That should normally be full code, in exceptional circumstances to use the threshold test they have to follow a procedure of getting approvals from people like the Chief Crown Prosecutor and the Head of the Special Crime and Counter Terrorism Division (kinda shows what the EAW was designed for). I have no idea if they did that, but if they did, they did it impressively quickly. Does it matter if they took a shortcut? Do they have Crown Immunity like they do for their decisions? Not if it is an administrative failing and they were not following their own procedures. Maybe they did get the exceptional process done, maybe not. I am sure we will find out in the fullness of time. Update: The CPS appear to be legally able to issue the warrant if “there are reasonable grounds for believing that the person has committed an extradition offence, and a domestic warrant has been issued in respect of the person.” http://www.legislation.gov.uk/ukpga/2003/41/section/142 but they still don’t appear to have followed their own procedures.

The start of the EAW process is a normal domestic arrest warrant. They have to get that first then upgrade it to EAW. The King family left the hospital at 2:15, there was a claimed 24 hour life on the battery and a claim that if the battery ran out this could constitute an offence of willful neglect, which is cruelty to a child and has a maximum sentence of 10 years (sentences can vary from nothing up to that maximum, people can be pretty cruel to a child, the EAW only looks at the max sentence for the offence, not the likely sentence for the alleged circumstances). Now the timing here is interesting to me. Based on what we think the complaint was, the willful negligence would not commence until 24 hours after leaving the hospital when the battery would ran out. (feed bags don’t last that long, but they were only talking about the battery). So, if the domestic warrant (first part of the long EAW process) was issued prior to 2:15 on the Friday then it was a warrant for an alleged offence that wasn’t alleged to have started yet! That would be kinda unusual to say the least, pre-crime belongs in Minority Report, not the UK justice system.

Once the EAW was passed around Europe The Spanish police reacted with all the vigour that is expected for the child abduction they were told it was, they didn’t do much wrong.

The CPS didn’t withdraw the warrant first thing on Monday morning and petition the extradition court for an immediate termination of proceedings. The Spanish court was confused and remanded in custody to consider bail. The Spanish hospital thought the ward of court order included a provision of no access, which is why initially the brothers and then the parents had difficulty with access. Maybe a ward of court does include no access by default in Spain, I guess eventually that was clarified to them, but it is unfortunate but understandable that the child protection administrator in the hospital was enforcing an order that the judge didn’t give.

There was further confusion about the ward of court, online. People thought that Portsmouth City Council had custody, they didn’t. Portsmouth requested the high court to take wardship. The court became the guardian, to make decisions for Ashya (not for the council or the parents, for Ashya). Once the court took wardship on Friday there was nothing that could vary it apart from an order from the judge. A wardship order can’t be overturned by the party that requested it, or the hospital even if they don’t want it any more. It can’t be overruled and instantly revoked by the Prime Minister, Prince Charles, The Queen, The Attorney General or anyone else (the list of suggestions made by people on twitter was longer and sillier than that). If the council and hospital lied through their teeth when they requested it that doesn’t mean it is invalid. Once in place, it is in place and it gets varied when and only when the judge orders it so, and that will be done when it is in the best interests of the child to do so. There were questions about jurisdiction, and this is legally weird (I am an armchair specialist in legal weirdness). Wardship is done in the inherent jurisdiction of the court. This is a slightly odd bit of English common law which a Spanish lawyer probably isn’t that familiar with, and wardship is a bit strange. If one of my kids was in Spain, and someone had to answer the question “who has parental responsibility for this child?” then half the answer would be me. Doesn’t matter that I am not there, doesn’t matter that I don’t have a local Spanish parenting relationship with the child. Doesn’t matter where in the world you ask that question, the answer is the same. Wardship works like that. The answer to the question “Who has parental responsibility for this child?” is “The Family Court Division of the High Court” (roughly speaking, but that is close enough to get the idea). It might not even matter that Ashya was born in Spain, if the minor is habitually resident then the high court thinks it has jurisdiction. Some might argue with that, but it probably isn’t a good idea to argue with a court that thinks it exercises unlimited power.

Some people were outraged that the parents were not represented at the application for wardship on Friday. This is not unusual. Parents often are not available or don’t turn up to such things, normally for bad reasons or very bad reasons, and occasionally for really really horrible reasons. Some people said that parents views should have much more weight in the family courts. This is misguided, do remember that this is a startlingly unusual case. Most of the time the courts need to protect a child from the parents. In this case the child needs to be protected from the applicant, that is fine, the court works just as well like that. The judge is on the side of the child and can work with the parents against wishes of the applicant just as well as working with the applicants against the wishes of the parents. That is what happened on the Friday, just over a week after it kicked off, the parents treatment plan was agreed by the court, ordered to be implemented and the wardship lifted (Some people were talking about the court giving them “permission” or being “allowed” to fly. Not quite the case. The court ordered that they have permission, which makes it a bit unstoppable, note that the wardship is lifted on arrival at the treatment centre in Prague, not before.) The hospital have given up all objections, but if they had continued objections they would have to take them up with the judge or be in contempt. The King’s treatment plan has now got the full force of a high court order behind it. I understand the hearing on Monday is still planned to go ahead so the judge can explain his decision. I think he might be a bit cross, I suggest bringing popcorn and not being a lawyer for the council.

Questions will be asked about that wardship hearing on Monday, the parents were not represented and information was not presented by the council that could have been, specifically relating to the funding options for the treatment. I was quite surprised to hear that the applicants told the judge in court that they had absolutely no idea how the treatment might be funded. They didn’t tell the judge about the plan to sell the apartment, they didn’t tell the judge about any online fundraising, they didn’t tell the judge about the offer from Prague to get on with it and sort the money out later. At the very least I think they failed to give the judge information that they had access to, whilst the parents were unrepresented and still in custody. I think the judge had a pretty good idea how wrong the wardship was at that time, however with the parents still in custody and the applicants not telling him the full story he couldn’t do anything but hang on to it for a while until he could talk to the parents. Here are the orders made that day.

Someone should totally do something!!!

This was an epic fail, and after every epic fail we implement knee jerk legislation that fixes the problem and never has any side effects. Oh wait no, it is the other thing. There are improvements or changes that could be made, some are minor tweaks, some are observing existing rules, some might be new. We should remember that this situation is really rare, any reaction to fix this (such as boosting parental power in the family courts) that has a side effect that impacts the more common situations will probably only be known for the side effect. Here are my suggestions.

The CPS should use full code on the EAW. No shortcuts to threshold test, it is meant to be hard to use threshold, keep it hard.

There might be a need for an EAW-lite, a cross-border request for police in another country to find, stop and question someone. Maybe the Interpol yellow notice would already do that perfectly well and they shouldn’t have gone for the EAW (and the CPS shouldn’t have issued it under current rules requiring full code). There is something on the way called European Investigation Orders which might be it. They are highly controversial, but the legislation was adopted in Europe in March and national governments have 3 years to implement it (that is how EU laws work, they get adopted in the middle but have no force, then the nations must copy and paste into their own actual legislation within a time limit). These investigation orders would allow the UK police to ask the Spanish police to stop a car and check that everything was fine. The Spanish police would then have the discretion to decide that it wasn’t a police matter, or to take whatever action they wanted. With the EAW they must arrest, detain and extradite. No discretion. On the downside this investigation order thing would allow any EU country to request the UK police to investigate any citizen. That sounds a bit bad.

The CPS needs to be one heck of a lot faster at getting an EAW withdrawn, they can raise it in an afternoon, 3 days to get rid of it is far far too long. They need a really fast “oops” process.

The CPS should be at the initial hearing of the extradition, ready to throw in the towel and stop things if the situation is manifestly not as expected.

Doctors should never ever discuss protection orders with parents before actually getting one (and probably not even then). As Yoda said, “Do or do not, there is no try”.

Doctors when reporting a missing child to the police should stick to the facts and give all the facts, regardless of how long it takes to get them across. Don’t sex up a report like a dodgy dossier to make it sound more dramatic than it is. The feeding tube battery panic was not grounded in reality (though they could have gone strong on the choking risk). They knew what the plan was. They knew the plan in enough detail to tell the family court on Friday that they might need to look in France, Spain, Germany, the Netherlands, and the Czech Republic. Look on a map, the alternative route would be ferry to the Netherlands, straight to Prague, leave the family there and go on to Spain to sort out the apartment. The hospital knew there was a plan, they knew it didn’t constitute neglect, distorting it into neglect with the objective of getting the police to take action didn’t help anyone.

Journalists, and in fact everyone saying stuff online, should fact check. Really properly fact check. If someone is telling you something that sounds a bit implausible then check it out. Even the trivial stuff, if you are saying that two parents, plus Ashya and his six siblings are driving in a Hyundai I800 that has 8 seats, you might want to contemplate whether that works, or whether Ashya might be one of six siblings (I don’t actually know the answer to that one, but as reported it doesn’t add up). If you are making the implication that someone is refusing medical treatment on the basis of the irrational dictates of a religion, you should check what medical treatment that religion objects to, and whether it is plausible that it is in any way relevant (brain surgery isn’t very bloody). A journalist should have found out more about feed tubes and figured out that the battery hype was bogus. I had no idea about the things until I heard this story and it just didn’t add up, so I looked up the specifications of the devices. It isn’t much harder to be right than it is to be wrong and it feels much better.

What happens next?

Well Ashya is off to Prague now, nobody can mess with that. He will get therapy, which will make him worse and kill the cancer. After that he will get better. How much better is unknown. A full recovery would be very optimistic, there is no reason not to be optimistic, but be aware that there are realistic and pessimistic outcomes also. There is going to be legal action. Possibly several cases. (Hampshire Police possibly making a complaint against the hospital would be an interesting one). If the treatment is successful it might lead to pressure for more proton beam therapy centres being built and consequently massive extra costs being put on the NHS, for possibly no scientific benefit. It might lead to people being irrationally scared of radio therapy and resorting to less scary sounding stuff that does nothing.

Hopefully the thousands of uninvolved spectators like me have learned more about cancer, brain surgery, particle physics, law, wardship, extradition, procedures, the determination of stressed parents, jurisdiction and child protection over the last week. If all that we can really learn from this is in fact actually learning stuff then that is not a bad outcome.

First Published 8th September 2014. Please direct any comments or corrections to @alanbell_libsol on twitter. This article may be reproduced verbatim, but please let me know so I can tweet about it. If you want to reproduce it with edits then check with me first, I am likely to be cool with it.

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