Dr Antony Michalski, who specialises in the treatment of childhood cancer, featured prominently in the first episode of the BBC's Great Ormond Street documentary.
In this exclusive interview he talks about treatments, research and decision-making at Great Ormond Street Hospital.
What are the biggest challenges facing doctors treating childhood cancers?
The biggest challenge is the children for whom cure is not likely. Thankfully they are a minority and the number of children we don’t cure is getting smaller, or rather the percentage of children we don’t cure is getting smaller as time goes on, but it is always an individual tragedy, not only for them but also their families and their communities. The ripple effect of having a child die is very substantial.
How have cancer services for children developed over the past decade?
Childhood cancer has been at the cutting edge of the centralisation of care for a very long time. As it is thankfully very rare, and only 1 in 600 children will get any form of malignancy, people have recognised that even in big hospitals they are not going to have the experience to run their own treatment protocols, so now it’s about working collaboratively with other units nationally and internationally.
The big impact in the last ten years has been the increased understanding of what makes cancer cells act as they do. Research into molecular biology has allowed us to really open up the cancer cell, find out why it behaves in a certain way and work out with greater accuracy how a tumour is likely to behave.
Previously we did really well just looking down the microscope, looking at how cancer would spread etcetera, but now we have an extra raft of information, which gives us real clues as to whether a tumour is going to behave in a benign fashion. This means we know whether to cure the child with less intensity of treatment or, if the tumour is going to behave in a really malignant fashion, to start to consider using much more aggressive therapies.
How important is research to the treatment of childhood cancer patients?
None of the recent progress would have happened without research. We would have merely carried on doing things in the way we previously did. Without new information – and it being collected and thought about and published and presented and thought about again in light of other people’s information – you just don’t make progress.
Has this impacted on survival rates with rare forms of cancer?
Yes, it really has. If you look at the history of paediatric oncology the survival for all cancers has gone up by about ten per cent per decade.
However, there are still some diseases where we have made no progress in forty years. We’ve done all the studies, we just don’t have the right sort of treatments for those diseases yet. But again, research into molecular biology is hopefully going to give us all kinds of new options and hope. You never know, this might be the way forward.
Is looking into molecular biology the way forward to treating children with cancer?
I think it is integrating molecular biology with everything else. You’ve eventually got to look at the molecular biology of the tumour in the context of the rest of the disease that the child has, and then ask the question: what is it that predicts what this tumour is going to do with the greatest accuracy?
How rare are the cancers shown in the documentaries?
If you look at a child with an ependymoma for example, one in 600 children gets cancer, a quarter of those are brain tumours and ten per cent of those are ependymoma. You are talking about one child in secondary school developing an ependymoma over a ten-year period. It is very rare indeed. It’s approximately one in 24,000.
How difficult can it be to decide when it is appropriate to operate?
All our children are discussed in multidisciplinary team meetings where you have input from the radiologist, the oncologist, the radiotherapist, the neurologist and the neurosurgeon who have seen the patient. It is then a question of putting those skills together and concocting the best plan to suit the individual child.
Now, thankfully, there are very good international protocols and guidance for most situations. You can’t just unthinkingly apply them: you have to tailor the therapy around individual circumstances.
How do you guide parents through the decision-making process?
Consent to treatment isn’t an event. It is a process. It’s really multiple conversations trying to help the family get the level of information they need to make their decision.
You've got to be brutally frank about the risks. You’ve got to be brutally honest about the potential benefits and you’ve got to give them time to assimilate everything, ask lots of questions and make a decision. All of that would be difficult enough if there wasn't also a time pressure and a huge emotional burden on top, but very often there is a time imperative to get on with treatment. And very often, understandably, there is a huge tsunami of emotion within the parents as their child is critically ill. It can be a very difficult process.
I am always immensely surprised and humbled by how well parents assimilate the information and what sensible decisions they make for their children.
What kind of informational and emotional support does GOSH offer families as they make decisions about treatments?
We've got lots of access to doctors, specialist nurses, and Macmillan and CLIC Sargent social work teams who are a fantastic support to our families. We've also got psychologists the families can talk to as well.
There are lots of very good resources that are national and international – many of which are available online, but we try to guide people through a process as much as we can.
What support is available to staff in decision-making and the potential consequences of the actions taken?
We know the protocols and we go to meetings. We are always continuing our medical and nursing education and making sure that we are up-to-speed with what is going on. We also update each other with the progress of all the individual patients, so our intellectual needs are met.
I think it can sometimes be very hard. You do get close to the children and their families, and if it doesn't go very well for them and you lose them it is a very sad experience.
Are there support services offered by the hospital?
Yes there are, but if something acute and terrible happens we can put ad hoc debriefs in and there are psychosocial meetings that are used on a more regular basis. It is a question of giving people resources that they can selectively use.
What was it like having documentary makers involved in your consultation with and care of patients?
Initially it was really rather weird and I was glad there was a robust consent process for the parents. However, I thought they were sensitive and empathetic, and they asked some very thought-provoking questions along the way.
If you ask would I like people to follow me around non-stop? Absolutely not, but was it an interesting experience? I suppose if the programme comes out in such a way that it gets people to think about the difficult issues around end-of-life care and decision-making then it was worth the extra time, effort and energy.
I think the motivation for being involved in the programme was that it is a difficult issue about which there is relatively little exposure. There are lots of things around that say heroic doctors and nurses cure ill children and everybody goes off smiling, which is what we want for all our patients, but sadly there is a substantial minority where that doesn't happen. Therefore, I think a good outcome from the documentary would be to have an increased public awareness about what can happen and the difficult decisions that surround those circumstances.
Cancer services at GOSH
How representational of patients treated by the oncology department are those featured in the documentary?
Every child is different and we deal with lots of different types of diseases. But if you abstract from the individual diagnosis, then you know many families are in a circumstance were the conventional treatment for a given disease has failed and there are choices to be made about where you go from there: so that’s kind of representative.
How do the procedures featured in the programme differ from your day-to-day work?
This is what we do.
Finally, is there anything that may not have made it into the documentary that you would like people who have seen A Difficult Line to know?
I would like people to know about The Child Death Helpline that we run here at the hospital. I think it is terribly important people know about this service.
There may be people who have suffered the death of a child from cancer twenty years ago who watch this programme and feel the need to talk to somebody who understands. So I would like them, and others, to know this service is available.