Interview with Dr Peter Wilson for My Baby's Life: Who Decides?

12 March 2018

Could you start off by explaining what your job is, and what that entails?

I’m a Paediatric Intensive Care consultant, so we look after the critically ill children – so that’s after head injuries, after major illnesses, after heart surgery, that sort of thing. We look after between 900 and 1000 children per year.

You’ve been filmed for a two-part documentary series - it about?

In a nutshell, it’s about intensive care staff and families who try and work together to make really, really difficult decisions. The reason why we thought this was an important film to make in light of quite a lot of the recent media stories about a number of children throughout the country. I think our experience as a community is that, as doctors, we’ve now got to the point where we can do lots of things that we couldn’t do ten or 15 years ago, as far as prolonging life goes. But that’s not necessarily always the right thing for the child. That’s really, really hard. As society has changed, society expects that doctors can always do something, and save lives. And with the advent of social media, we now have the rapid spread of soundbites, and I suppose we feel like some of the media coverage in recent years has done a disservice not just to doctors, but to families as well. I think it sensationalises the decision-making, where this is not a black and white, doctors-are-bad, parents-are-great, or parents-are-bad, doctors-are-great situation. These are difficult decisions, and doctors don’t make them lightly. We don’t go “This child can’t go home, we’re going to switch them off.” It involves a huge amount of thought and a huge amount of anguish and agonising with the families. So we want this to be the beginning of a discussion as to how we think about end of life decision-making.

Obviously the ideal scenario in these cases is for the parents and medical professionals to agree on the best course of action. How often is that the case?

I think probably 90-95 per cent of the time we and the parents agree. At Southampton we’ve only been to the High Court I think three or four times in the last ten years. Normally we can come to an agreement. It may be that we have a child who we agree is not going to survive long-term, but with the family we agree that we will continue to treat them. We don’t see that as a failure of care, we see that as the beginning of a conversation with the family. Some of this is quite hard. From the outside, it might look as though we’re trying to end a life now, and then the child survives. We think of it differently: we think of these children as having a life-limiting condition, so their life will be shorter, and at some stage they will die. So this is the beginning of that conversation with the family. Some parents will want to let their child go at this point, others might want to keep on fighting for a while longer. If so, we will work with them. Our best outcome is that we never go to court, because we can always find an agreement in some way.

Do you ever have a scenario where the medical experts don’t agree?

I think that doctors will all have different opinions, and I think one of the really important things you see in the films are how many people – not just doctors but multiple people trained up in their own specialty – come into this with their own view of what quality of life is. The reason for having so many people involved, and the reason for the ethics committee, is so that all views are represented. You always want to get to a position where you can get consensus. If there was not consensus, I think we would always err on the side of continuing to treat.

We talked about technological advances. Is it conceivable that some of the babies who have life-limiting conditions at the moment could have cures in the future, and it would therefore be worth hanging on for those?

That’s a good question. I think we keep a lot of children alive through technology, where we absolutely believe that within the next five or ten years there’s a possibility of their having a quality of life. We’re not suggesting that all children who need technological support should not receive it. What we are saying is that there is a sub-group of these children, where we do not believe, in the foreseeable future, that there is a cure, and that therefore we are keeping them alive because we can, rather than because we should. There are obvious exceptions, and there are grey areas, and it’s very difficult for a doctor to be certain. That’s why we have lots of people talking about it.

In disputes, is it always the same – that families want care to continue, and doctors want to withdraw it? Or does it sometimes happen the other way around?

It sometimes does happen the other way around. Certainly some families can come to the conclusion on their own. I think, in this series, one of the children involved, the family make the decision themselves. That was quite normal, 10 or 15 years ago – families would say that they’d had enough, and wanted to stop. And it’s become so unusual, because of societal change, that actually we took this case to the ethics committee just to make sure we were making the right decision. Yet 10 or 15 years ago we would have just agreed with the family and stopped treating. But yes, we have a number of families who make these decisions. I suppose our duty as doctors is that the family should never be the ones who have to make the decision. I don’t mean that in a patronising, patriarchal, medical kind of a way, I mean that I don’t think I, even with my knowledge, could ever say to someone “I think my child can be switched off.” I would want somebody to take responsibility for that decision, and ask me if I agreed with them. So much of what our job is, is to make sure that we can work with families. And that’s why, even when we disagree, we still make sure we have a good relationship with the family, and can still work with them. When that trust breaks down, that’s when you end up in court. And, if I may say so, the series might focus on just a few of us, but our whole team, and in particular our fantastic nursing staff, play such a key role in our relationship with the families, and the care that we give these children.

How do you determine quality of life?

That’s the million dollar question. I think everyone feels differently. I think what we see, as doctors in Paediatric Intensive Care, what we see is the long-term consequences. For a lot of families who start out in this position, they can only see the short term, where we will see the next five or ten years of children’s lives. So I think that quality of life is very, very subjective, and that is one of the reasons why this is so hard, because my idea of quality of life is potentially very different to a parent’s idea of quality of life.

How could the media cover this sort of thing better?

I think one of the reasons we wanted to make this series is that we wanted to show that this is a very nuanced conversation. Even when we disagree with a family, even when it ends up at the high court, we would never suggest that what they were doing was absolutely wrong, because they are trying to do what they think is in the best interests of their child. I think the media and social media have a huge amount to answer for in this. It’s soundbite sensationalism that simply doesn’t tell the full story, and we want people to understand that this is a grey area, a nuanced conversation, so that the next time this happens – and there are two cases going on in the country at the moment – people realise how difficult this is for both the families and the doctors.

Do you enjoy what you do?

I love my job! I do two jobs – I’ve got my Paediatric Intensive Care job, where I’m a clinician, and I’ve got my management job, where I run a children’s hospital. I love both equally, but where I am most comfortable is looking after children and their families.

What’s the hardest part of what you do?

I think you see that, in the film. I think one of the really hard things, especially with these children who are with us for a long time, we get to know them and their families really well, because they are with us for months and months, sometimes for years and years. And so the toughest part of the job is making sure that any child that dies has as ‘good a death’ as you can possibly get. So that the family know they’ve done everything they can, the family know that we’ve done everything we can, and that takes a lot of emotional energy on all sides.

How do you cope with the pressures?

I think we have an amazing team, a whole multidisciplinary team within our ICU. We look after each other really, really well. And there’s quite a lot of humour in Intensive Care, which I think is important. Personally, I cycle. I think also, families who tell us they understand what we are doing is really important to us.

Lastly, in practical terms, what was the filming experience like? How was it, being followed around in the workplace for a year?

I think in the beginning it was really tough. There was obvious nervousness because of the subject matter. We have had film crews in before, but that’s doing more of a ‘day in the life’ kind of thing. I think with this, it was tough at the beginning because there was huge nervousness because the documentary we are making is such a sensitive subject. We were really worried about the public perception. So the first couple of months were really tough on us, but also on the film crew, because we were probably a little stand-offish, and we were quite keen that they didn’t film some things, because we were scared. And as we got to know them we began to trust them, and by the time they left, everybody was sad to see them go. They’d just become part of the family. And I think, really interestingly, the families that they’d followed absolutely felt like they were part of their family as well, which I think is a huge testament to the production team. They did an amazing job, because I don’t think something like this has ever been done before, and it needs a special group of film makers and producers to be able to not just get doctors on board, but also, much more importantly, get families on board. Especially with the subject matter that was being discussed.