Understanding Definitions and Reporting of Deaths Attributed to COVID-19 in the UK – Evidence from FOI Requests

  1. Tom Jefferson
  2. Madeleine Dietrich
  3. Jon Brassey
  4. Carl Heneghan

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Abstract

Death is a widely used outcome to assess the severity of pandemics. Accuracy in assigning the cause of death is of vital importance to define the impact of the agent, monitor its evolution, and compare its threat with those of other agents. Throughout the COVID-19 pandemic, there has been widespread reporting of aggregate death data with little attention paid to the accuracy of the assignment of causation.

We aimed to analyse public authorities’ understanding of the assignment of cause of deaths during the SARS-CoV-2 pandemic in the UK by accessing Freedom of Information requests posed in three periods in 2020-21. By public authorities, we mean NHS Health Trusts, laboratories, and government agencies such as Public Health England and the Department of Health and Social Care. We searched WhatDoTheyKnow using the terms “covid and death”. We excluded those requests to bodies that cannot provide an answer (e.g. Councils) and those dealing with the effects of vaccines.

We grouped questions into themes addressing the definitions and causes of death relevant to the pandemic. We looked at the responses to the questions of the definition of cause of death, the accuracy of the attribution, the role of other pre-existing pathologies and how these were reported and quantified.

We found 800 requests from over 90 individuals. There was no consistency in the definition of cause of death or contributory cause of death across national bodies and in different bodies within the same nation. Nursing home providers, as well as medical practitioners, can assign a cause of death according to the Care Quality Commission. Post-mortem examinations were uncommon, the ONS did not incorporate their results in the summary of deaths by cause during the pandemic period. The meaning of the words “test” or “swab” was never clarified by any of the respondents. In care homes in England 1,304 out of 17,264 COVID-19 (7.6%, range 0% to 63%) mentioned COVID-19 in the absence of contributory or other factors in the death certificate, making it impossible to ascertain a chain of causality. The inconsistencies already noted hinder the ascertainment of the role of each factor leading to death and the quantification of the importance of infection. Some responses indicate that SARS-CoV-2 negative individuals or those whose death was not caused by COVID-19 were classified as “COVID-19 deaths”. We found 14 different ways of attributing the causes of death mentioned by respondents.

The overall lack of consistency has confused the public and likely led to erroneous conclusions. We are unable to separate the effects on deaths of SARS-CoV-2 from those of human interventions. A coherent process based on consistent definitions across the devolved nations is required. Furthermore, to enhance the accuracy of causation in pandemics a subset of deaths should be verified using autopsies with full medical documentation.

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    SciScore for 10.1101/2022.04.28.22274344: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    NIH rigor criteria are not applicable to paper type.

    Table 2: Resources

    No key resources detected.

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

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    This question cannot be answered with any certainty through the sole use of death certificates, particularly given their inherent limitations. In hospitals, junior doctors can often be tasked with signing medical certificates of cause of death.15 Normally, the doctor who verifies the death, or cared for the patients during their last 14 days is eligible to sign the MCCD. In the pandemic, the duration was extended to 28 days. A death certificate is based on the probability the deceased expired of the causes on the death certificate. Prioritising the condition leading to death can prove difficult: it is affected by the experience of the clinician, their prior knowledge of the patient. In the presence of several comorbidities that may compete and co-exist with each other an individual may easily appear to die with rather than of their disease.16 The condition listed on the bottom line of Part I of the certificate is the underlying cause of death. The cause of death is based on medical opinion, which may change as more information becomes available. In the midst of a pandemic, the assignment of causation will be affected by availability and representativeness heuristics. Heuristics are mental shortcuts that aid problem-solving and judgments. However, they can often lead to erroneous conclusions.17 The availability heuristic also referred to as the availability bias is ‘a distortion that arises from the use of information which is most readily available, rather than that which is ...

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  2. Version published to 10.1101/2022.04.28.22274344v1 on medRxiv