A Matter of Life and Death. Sue Armstrong
ward, his senior doctors and all the junior doctors as well – and they all loved it. No one said, ‘Ethically you shouldn’t be doing this.’ They all said, ‘This is fantastic. We’ve never had feedback like this; this is hot feedback. The patient died on Monday; we now know why he died. This has never happened with us before.’ They gave me every possible help. This was real clinical pathology going hand-in-hand with management of cases. They gave me a huge party when I left, and said, ‘Please come back! This is what medicine’s meant to be all about.’
I came back to the UK in 1992. And the next two or three years were basically spent writing everything up. It doesn’t happen overnight; there’s a lot of analysis. Kevin was also back in Britain, which was wonderful. He was a professor at the London School of Hygiene, so we sat together and wrote papers. And that enabled me to get the chair here.
Looking back on your early research into AIDS and how easy it was to collect material, do you feel the Alder Hey debacle was waiting to happen, and that it was right that people should start challenging the practices of pathologists?
Only up to a point. And that’s because, when autopsies are done well, the public health benefits are so colossal that in my opinion they override, to some extent, personal objections. I’d be quoted saying that in public quite happily because it’s true, but it doesn’t look good. I had two complaints throughout the whole process. No parents of any of the kids in Abidjan complained, and we did about 150 children. So my point about overriding what we now regard as narrow consensual requirements is that it’s completely outweighed by the public good it does.
When Alder Hey happened I was here at St Thomas’, and we were more vulnerable than most other places in the country because we have the biggest collection of paediatric kidneys, hearts anywhere – much bigger than Bristol, because we’re a big cardiac surgery unit. We had a professional perinatal pathologist who was very interested in congenital heart disease, and she kept everything, because one did – no criticism of her. She took the whole Alder Hey and Bristol business very badly, and after some months she left. Now the last thing she’ll ever do is perinates – all that phase of life, all gone; she’s doing other things now.
I have to say the chief exec here, Sir Jonathan Michael, was brilliant. I have only praise for him. He realised that organ retention was a big issue, we were vulnerable and it had to be addressed openly. So very rapidly we had a team organised to work out what we’d got; that was the first consideration and there was a lot of work to do.
We have the biggest pathology museum in the country here, the Gordon Museum, in Guy’s. Not for a moment did we shut a door, remove an exhibit, close anything. Unlike Dublin, which closed its museum. Unlike the London Hospital, which cemented it in! I joke not. A whole lot of deans took fright, and actually shut the museums. We said, ‘We do not do this. We will keep our displays open.’ And particularly, we have a fantastic series of pots of malformed fetuses. Now this is not prurient stuff; this reminds the students that this is why we have prenatal scanning: so that we don’t have any more babies born with no heads, with spina bifida and things like this. It’s a brilliant display. You can be lectured like mad about the importance of antenatal screening; 10 minutes in the Gordon Museum and you can see why we do it.
One thing that didn’t happen here, and that did happen in Bristol, Alder Hey and other places, was that we didn’t have a whole lot of anguished relatives on our doorstep. I think the reason is that London is very different from Liverpool: patients coming to this hospital come from an enormous catchment area, so big that they never get together. So from that point of view the reaction was diluted. We talked to people, and we were not sued. We handed back some material, but most people were not interested.
But looking at Alder Hey, was what Van Velzen did standard practice for the time, or was he actually behaving unethically?
The major criticism of what Van Velzen was doing was that he took much more than anyone else did. Secondly, a very legitimate criticism is that he actually lied, in that there were reports coming out that said he’d done work on these materials which he obviously hadn’t done because they were still intact. That was professionally unforgivable. He took stuff intending to work on it but never actually did – and probably knew he would never be able to because he’d just got so much material, but he just kept on collecting.
But does that not go into an archive that other people can use?
Yes, they could do if it was properly documented. But it wasn’t properly documented, so that archive is effectively useless to anybody else. And he didn’t tell people he was doing it. Now there’s a lot of discussion as to whether he needed to have told, in all circumstances, what he was doing, but I’m not going to revisit all that, because it was a mess.
Actually, things haven’t got much better. They’ve got more bureaucratic, but there’s still a huge grey area in tissue retention. It’s very clear what to do if you want to be squeaky clean: you do nothing. That’s easy. But the point is, to be good and to be useful for public health you need to do a bit more than that, and that’s where the grey areas come in. I experience this day by day, and I know how to deal with it because I’ve rubbed along the raw edges; I’ve worked out how to do things that are ethically reasonable with appropriate consent built in, but so that you get what you want in order to advance knowledge and help people.
So are the rules now so constraining that you’re actually losing an awful lot of what might be beneficial?
Absolutely.
So has that in any way dimmed your enthusiasm for the work? What drives you to continue?
Curiosity! Even though I’m 60 I’m still very, very curious about things, and I haven’t yet seen it all. It’s a real important driver, actually, curiosity. It’s probably the biggest driver of all. I come into work every day early and leave later than my wife would like because there’s such an amazing amount of things to see, and some of it I’ve never seen before. In a way, every case is a challenge – you think: it’s me against the truth, and can I find it?
HOW BODIES DECAY: LESSONS FROM THE BODY FARM
Bill Bass
Emeritus Professor of Forensic Anthropology, University of Tennessee, Knoxville
Around half of all forensic anthropologists working in the US today have studied with Bill Bass, who, in the early 1970s, set up the Anthropological Research Facility – better known as the Body Farm – on waste ground at the University of Tennessee, at Knoxville. Bass, who started his career excavating burial sites and cataloguing the bones of Native Americans for the Smithsonian Institution in Washington, DC, discovered from experience that one of the hardest things to get right is the length of time a body has been dead. Working later as a consultant for the Kansas Bureau of Investigation, he became convinced there was a need to study, in a methodical, scientific way, exactly what happens to bodies as they decompose. But it was the case in which his judgement of the time of death was a full 112 years out that galvanised him finally to set up the Body Farm, where corpses are left to rot under different conditions, and all manner of studies are undertaken by scientists.
When I went to speak to him in autumn 2007, he drove me straight from the airport to the site on a hillside overlooking the Tennessee River.
Let me give you just about a three-minute history. I taught forensic anthropology for 11 years, from 1960, at the University of Kansas. I also identified skeletal material for law enforcement agencies in Kansas, but I don’t ever remember getting a maggot-covered body – they were all skeletal remains. I came here to Knoxville 1 June 1971 to take over a three-person department that was an undergraduate-only programme and to build it into a graduate programme. The medical examiner in Tennessee knew me and asked if I would serve as a forensic anthropologist for the medical examiner system, and I said, ‘Yes.’
It