Sudden Unidentified Death Syndrome (SUDS, SADS, SDS) & THE PATHOLOGIST

The following article was sent in to us to help our families understand a little better the difficulties that pathologists face with this type of death and the work done.

I am a consultant Histopatholgist and although most of my work involves diagnosis of disease in the living, I carry out some 200 post-mortem examinations every year. This week I have carried out several on young people under thirty years old. Three died in road crashes, another of a drug overdose. These are tragic but explicable, although no less painful for grieving parents. I have also seen several elderly men with massive heart attacks or perforated ulcers. These were unexpected but again the causes are something most non-medical people have heard of and can relate to.

Once or twice a year I see previously fit young people who die suddenly with no apparent cause. These deaths are a difficult diagnostic challenge for us, and even more so since we know what a tragedy these events are for relatives and friends of the deceased. These cases are totally unlike the road crash victims or the heart attacks in which pathological findings are usually clear-cut. Sometimes there are features of a previously undiscovered cardiomyopathy or valvular heart disease but often the findings are minor or non-specific. This means that unnatural causes such as drugs and alcohol have to be looked for, even though they can usually be later discounted. This alone may be distressing for grieving relatives, especially when these investigations delay registration of death. But these have to be done so that we may confirm to the coroner and relatives that we looked for all possible causes of death, even though there was no other evidence to support such a possibility. Sometimes the parents wish to arrange even more complex investigations so that no stone is left unturned. There is a craving to seek an explanation, however remote.

At the completion of the investigation there may be an inquest even though there is no evidence of an unnatural or suspicious cause of death. The inquest though seems to carry some kind of social stigma, linked to suspicion of foul play. Most inquests are nothing of the sort and designed only to establish cause of death and not to attribute blame. The atmosphere, though, is not helped by the rather formal, quasi-judicial nature of the proceedings and the presence of the press. Maybe a more informal atmosphere of someone’s office would be more appropriate for this type of case rather than a courtroom.

I find these deaths professionally unsatisfactory even though I know that I have done my best to establish the cause. It is hard to attend an inquest and basically to admit to failure. Families long to be told that their loved one died of a specific illness and not an unspecified or ill-defined entity such a sudden death syndrome, even though it amounts to a “natural” cause of death. There is often a feeling that something was missed in the past, that trivial symptoms had been ignored or that something could have prevented the death. I attempt to allay these fears, especially when I can find very little that could reasonably have been predicted during life. I try to translate difficult medical concepts into simple layman’s terms and give the relatives plenty of opportunity to interrupt and ask questions. It can be difficult to maintain a balance between over-simplification without being patronising, and medical accuracy although sometimes the relatives know more than I do especially those that use the Internet!

In many respects our job has been made more difficult by the restrictions placed upon us since the Alder Hey scandal. In the recent past it was considered good practice to retain whole organs so that second opinions or further tests could be carried out. Few pathologists now do this for fear of retribution. This means that much important information about these deaths is now lost forever, but who can blame us? Some pathologists have been verbally abused, had their children bullied and have had to give up the profession following disclosure that organs or tissue had been retained. This is frustrating for us as a professional group but clearly public and political opinion is against us. This is despite the undoubted good that may come out of some of these post-mortems in terms of knowledge, public health, and future research and, not least, the benefit to the bereaved in coming to terms with a tragic loss.

I hope this article has gone some way in helping families understand a little better the difficulties that we face with this type of death and the work that we do. Pathology has had some unwelcome publicity in the recent few years so it is nice to be able to redress the balance a little.

Author wished to remain anonymous