We humans keep dying. We always have. We always will. In 2019, approximately 57,000,000 people died globally, and 600,000 people in the UK, which equates to 1,600 people per day. As the only real certainty of life is that we are all going to die, we should be better at the death business by now.

It’s important to count the dead. We count the big numbers and compare them annually – excess deaths are a barometer that “something is happening”. But we also need to know and record how people die for public health management: planning NHS resources in the future, to inform government policy, for legal and jurisprudence reasons, and to provide certainty and alleviate the concerns and grief of the bereaved’s family.

While death and disease have dominated the headlines in the UK for most of 2020, we’re less good at considering our own demise. Perhaps the potent blend of death tolls in the headlines and our intrinsic fear of death blunted the nation’s ability to scrutinise exactly what these totals actually mean.

The UK’s emergency legislation in response to Covid-19 has radically changed how deaths are registered. If the Imperial modelling that predicted 500,000 deaths came to pass, it would be essential to fast track the registering and disposal of bodies. The UK did not want an Italy or Ecuador situation with bodies piling up. But this came at a cost: at a time when it is crucial to understand why people are dying, we have less clarity due to the changes in registration and recording, and due to lack of preparedness there are other social costs to count.

“Unprecedented” has been horribly over-used this year – and simply does not stack up against other bad flu years – but it should not equal “unplanned”. Ministers claimed not to have read the 2016 Exercise Cygnus pandemic planning report. Before Cygnus there was 2007’s Exercise Winter Willow, as well detailed debriefs into SARS, MERS, H1N1 and even Ebola. Plans should have been robust and flexible, but the NHS and Public Health England were ill-prepared in terms of surge capacity and PPE stocks.

We’ll never be able to properly count the Covid dead

“Unprecedented” is no excuse when pandemics are the basic bread and butter of disaster planning. Lucy Easthope is a disaster planner with a special interest in pre-emptive pandemic and recovery planning. She has advised the government on Covid-19, as well as Grenfell, the Salisbury Novichok poisoning and the Manchester bombing. She is the visible representation of the depth and detail of the UK’s disaster preparation and puts lie to the so-called lack of planning. She said, “The media and the government have sold the idea that no one could have expected this, but a pandemic is the most likely national risk, and very well prepared for in the Home Office and the Cabinet.”

Easthope is involved in planning for excess death and told me the UK is ready to store thousands of bodies: “For every Covid-19 death we would estimate another four deaths over two to five years, and that is how we plan body storage. You see extra deaths for domestic violence and obstetrics, delayed or missed oncology diagnosis, no admission to A&E, sepsis, suicide.”

So, should we have locked down? She is cautious, saying, “The virus is nasty, and it must be respected. Some social changes would be essential, but otherwise I would advocate business as usual. The idea that essential civil function and hospitals would shut is incredible. In a pandemic you plan to keep as much open as possible.”

I spoke to a coroner (who does not wish to be named) who confirmed that the UK quickly increased mortuary capacity. They think the lockdown and changes to death registrations were necessary when knowledge was scant and threatened by having to house and process 500,000 bodies. As it turned out, “the epidemic was essentially the sort of pressure we get over a normal winter. It was way less than what we had planned for.”

A scientific advisor deeply embedded in Whitehall also spoke to me anonymously. They told me they warned that there would be severe consequences for excess deaths if the country locked down. “Lockdown was not the way to go,” they said. “Bluntly, you should try and power through an epidemic. Lockdown was obviously going tank the economy. We have never trained for a lockdown like this. You don’t do it for a coronavirus. I’ve been through all my papers. It’s just not something we do.”

In the UK and the US, death is the metric that we have to come to measure catastrophe by

Except we did. The difficulty now is that although death totals are confidently asserted, the relaxation of the death registration in order to cope with the worst-case scenario, means we don’t really know how many people have died of Covid-19. Where once a doctor had to have seen the deceased within 14 days of death to sign off a death certificate, now it is 28 days. And in a time of social distancing, what does “seeing” actually mean? It might be a zoom appointment or telephone call. Remote verification of the body is even possible by someone who is not a medical professional although they should be independent of family members.

The problem is the UK does not have a functioning Medical Examiner system. It was being rolled out in England and Wales to add a safeguarding scrutiny to non-coronial deaths and improve the quality of death certification. A second, more senior doctor should agree the proposed cause of death. This would mean arbitrary rules like 28 days or 14 days since seeing the deceased could be relaxed, and it should also safeguard against another Harold Shipman. The implementation varies across different hospital trusts, there is no software yet to manage it nationwide, and the senior doctors who should act as Medical Examiners were called to frontline work during the epidemic.

The anonymous scientific advisor is frank about the result: “We have no idea how many people died because of this disease.” Easthope confirmed that “we have a crisis in death recording.”

15,460 deaths have occurred in care homes in England and Wales, which is over a third of the total Covid-19 deaths, and approximately another 5,000 care home residents have died with Covid-19 after being transferred to hospital. Another 746 in hospices. However, there is growing uncertainty about some care home deaths.

I spoke to a care home worker in the north of England about this problem. They have had cases where Covid-19 has been inaccurately put on the death certificate as the cause of death or an underlying cause of death. One resident, well into her 80s, tested positive for coronavirus at the end of March, when she had mild symptoms. She recovered but went on to die in August. A covering doctor who had never met the resident or seen the body, insisted that Covid-19 must have been a cause of death. The care home worker says, “She actually died of old age, quite peacefully and contentedly. Old age isn’t supposed to be used on death certificates, but sometimes it’s what it is.” How many times has this happened in care homes across the country?

There are a number of dangers. The Covid-19 death total is probably inflated as it has been liberally applied on death certificates. But a positive test doesn’t mean Covid-19 was necessarily a contributing cause of death. As all of my interviewees said, we have no idea how often this has happened, and now we never will.

Lockdown itself has caused a horrifying number of excess deaths, just as Easthope warned. By the end of July, one report attributed 21,000 of the excess deaths to lockdown, as a result of delays to treatment. There is an “epidemic” of people needlessly dying at home because they are reluctant, or unable, to seek medical help.

We have never recorded and announced the deaths of one disease with such dedication

Frontline mental health professionals are concerned about the impact of lockdown. One ONS study showed that the number of people experiencing some sort of depression increased from one in ten to one in five during lockdown. Suicide is the biggest killer of young people in the UK. Some children remain on lengthy waiting lists for mental health treatment. Ged Flynn, CEO of suicide charity Papyrus says, “This is scandalous. Saving young lives is no longer a national priority and we must change that.” Nine out of ten calls to Papyrus during lockdown reflected the impact of Covid-19 and lockdown, with many concerned about a loss of income, reduction in service provision, domestic violence and abuse, and the potential to become infected with Covid-19. Ged warns of the “longer-term problem of emotional distress” for young people as the impact of lockdown continues and mental health services are stretched. 

We have never recorded and announced the deaths of one disease with such dedication. Was this in the spirit of public information or was there an intention to use the metrics designed to create fear? At the outset the British public was informed how many people had died every day. As the numbers started decreasing, the focus moved to the “R” number – the rate of transmission, seemingly generated by a mysterious alchemy – and then to new cases, where we are now. Increasing cases are, of course, also a result of increased testing. Crucially, this means the number of cases can be as large or as small as public policy determines, rather than indicative of the spread or danger of the virus.

It’s just been announced that positive results will be repeatedly tested, hopefully eliminating some false positives. It’s interesting that this coincides with the lockdown screws tightening, as gatherings are reduced from 30 to six, and the first curfew since the Second World War is threatened. Ministers will be able to proclaim the success of these restrictions when “cases” can be influenced depending on sensitivity and volume of testing. We cannot leave the counting to them.

Public Health England death totals had to be revised down after their counting fiasco was exposed by Carl Heneghan. If you tested positive for Covid-19, your death at any time would have been counted as a Covid-19 death. Professor John Newton, Director of Health Improvement at Public Health England, said, “The way we count deaths in people with Covid-19 in England was originally chosen to avoid underestimating deaths caused by the virus in the early stages of the pandemic.” Did the statistics become politicised? 

“Death endures as a metric. Even if the death tolls are revised down, as with PHE’s count, the numbers endure,” said Easthope. “In the UK and the US, death is the metric that we have to come to measure catastrophe by.”

The anonymous scientific advisor wonders if the choice of metrics reported and the way we count deaths might be part of a plan to increase fear. After all, we know that SAGE recommended that people’s sense of personal threat needed to be increased to encourage compliance with rules. Even now we have passed the peak of the pandemic, government messaging still centres on fear.

 Easthope is worried that “we’ve done something incredibly traumatising to the families that is potentially bigger than the bereavement itself. In any disaster you should still allow people to see the dead. It is a gross inhumanity of bad planning that people couldn’t visit the sick, view the deceased’s bodies, or attend funerals. Had we had a more liberal PPE stockpile we could have done this. PPE is about accessing your loved ones and dead ones, it is not just about medical professionals.”

Good planning was cast aside. We were not equipped to process the Covid dead, and we’ll never be able to properly count them. In decades to come, when the inevitable reports and studies are published they will be littered with asterisks and freighted with footnotes. Or worse, taken dangerously at face value.

Beyond counting the dead, how do we count the cost to ourselves? Dying alone in a hospice, last rites delivered in full PPE, no family beside the bed. People unable to visit elderly relatives in care homes for months. Funerals limited to ten people. The young calling suicide helplines, bewildered and traumatised. The uncertainty over cause of deaths, the lack of closure. For this, we need the ultimate inquest and then the birth of better ways to count the dead.