Feature article: Have we forgotten to learn from the dead?
When we in Denmark systematically choose not to perform autopsies on people who die suddenly and unexpectedly, we also lose the opportunity to identify and prevent hereditary diseases in the deceased’s family. It is high time we discussed how to avoid losing the health scientific aspect, because no one within the system insists on performing autopsies.
By Allan Flyvbjerg, Dean of the Faculty of Health, Aarhus University and Christian Lindholst, Department Head, Department of Forensic Medicine, Aarhus University.
Ellen Jørgensen was only 52 years old when, while watching television one evening, she told her husband she was not feeling well and was going to bed early. When he came into the bedroom an hour later, she was dead.
Per Nielsen died already aged 61. He had a mental illness during adolescence and lived the rest of his life with the help and support of psychiatric care homes.
Ellen Jørgensen and Per Nielsen are fictional names, but the examples are familiar in the healthcare system. What Ellen and Per have in common is that they had a much shorter life than they should have according to the statistics. Ellen "should" have lived to be 80, while Per “should” have reached the average age for men in Denmark, which is 75. But no one knows why the two of them lost so many good years of life.
In fact, in Denmark we know very little about what people die of.
This is because in the whole of Denmark, only about 2,000 hospital and forensic autopsies are performed annually, which corresponds to less than four per cent of all deaths. The number of hospital autopsies has been halved during the past eight years. In the case of forensic autopsies, which are commissioned by the police in cases where there is a suspicion of murder, manslaughter, suicide, and accidents, or in the event of a sudden and unexpected death, the numbers in 2013 and 2014 are the lowest for several decades.
The result is that the historically low rate of autopsies leads to an unreliable register of causes of death.
This in turn means that anyone looking in the Danish register of causes of death must incorrectly conclude that hardly any Danes at all die form poisoning, just as almost no one dies of mixing too many different types of medicine or from congenital heart defects that could possibly have been treated.
If we take a glance at Finland, we see some statistics that tell a very different story. In Finland, autopsies are performed in thirty per cent of all deaths. Not because they believe there are more poisonings or drug-related deaths in Finland, but because there is a quite different tradition for carrying out research into deaths, which benefits future generations. Or as the motto reads above the gate to the section rooms where the dead are examined at Aarhus University: "Hic gaudet mors sucurrere vitae" (Here death delights in helping life). Or, in more idiomatic English: Here the living learn from the dead.
The explanation for the large difference between Denmark and Finland in the number of forensic examinations must be found in different administrative practices and traditions.
In Finland, many corpses are examined because the Finnish system has a scientific and health-based starting point: it wants to know what people die of, to make it possible to act in a preventive manner, so it is possible to take action if a e.g. particular type of medicine leads to excessive mortality.
In Denmark on the other hand, a shift in practice has taken place over a number of years, so that we primarily examine the deceased in cases where there is suspicion of a crime behind the death. There is also an additional group of narcotic-related deaths, where an autopsy is statutory.
This shift is natural enough, because the Danish police are the ones who order the majority of autopsies in Denmark – and pay for them. The police have no interest in finding out whether there is a hereditary heart defect in Ellen Jørgensen's family, which her adult daughters could benefit from being told about and could even perhaps be treated for in time.
Nor is it the job of the police to find out why the mentally ill typically have a much shorter life than everyone else, even though there is not necessarily anything in whatever illness they have that should cause this.
Learning from the dead is a scientific task, but also a task where the right to commission has, unfortunately, ended up in the wrong hands.
We could, naturally enough, ask why the people with the right hands – which is to say forensic pathologists and pathologists, do not simply carry out autopsies on more Danes so that we can find out what we actually die of in Denmark and so we can act accordingly.
But the reality is that despite the fine motto above the gate to the section rooms at the Department of Forensic Medicine, the work that takes place is completely dependent on income-generating activities. Forensic medical examinations fall under public sector consultancy, which is commissioned by the police and paid for by the police budget. It is deeply worrying that most important aspect is not society's interests and its citizens' health when a decision on whether to perform an autopsy is made. There may be compelling medical grounds to perform an autopsy, even though it is not a case of murder, an accident or some other criminal offense.
The current system of referral for autopsies in Denmark means that important knowledge about cause of death and hereditary diseases in the deceased's family is in many cases lost, because neither the police nor the healthcare system prioritise an autopsy.
When viewed in light of the quality assurance that is taking place in the healthcare system, one may also wonder why hospital autopsies are a dying breed. The autopsy is the ultimate quality assurance with regard to the conclusion of a course of treatment. Why is there not greater interest in studying why the treatment failed, how the disease developed or what the medicine did to the organs?
Forensic autopsies differ from hospital autopsies in a number of important areas. A forensic examination includes a CT scan of the deceased together with a number of forensic chemical analyses of blood and tissue.
This means that the forensic examination can – putting it simply – tell you much more than just what you were looking for. It can also leave more research material and this can be included in a larger context later, where it is possible to see and search for patterns in large volumes of data. The forensic medical examination thus provides a much stronger starting-point for research activities.
But for the great majority of Danes, this noble part of the medical profession is becoming a relic of the past, and most of us associate forensic medicine exclusively with what happens in American crime series and the tragic identification process following natural disasters, plane crashes or judicial processes after genocide and other war crimes.
We do not consider the fact that significant research is being lost that could benefit not only us, but also our children and our descendants in general.
This development should be altered to ensure that legal and health interests are coordinated, so that resources are used where they are most appropriate.
Police resources must not be the crucial factor in determining whether autopsies should be carried out; autopsies from which we can learn about diseases that we will be able to prevent or treat.
The healthcare system ought to give greater priority to investigating deaths that are of interest for society in general and which can benefit all of us.
The article was originally published in the Danish newspaper Jyllands-Posten on 30 October 2015.