Living and dying with covid: When every life counts equally, how should we count deaths?

Authors: Cian O’Donovan, Melanie Smallman, James Wilson

Project: UK Pandemic Ethics Accelerator

Originally published: https://ukpandemicethics.org/living-and-dying-with-covid-when-every-life-counts-equally-how-should-we-count-deaths/

Summary:

  • Counts of covid-19 deaths will continue to influence government responses for some time to come
  • Infrastructures for counting deaths must be adapted to fit evolving circumstances
  • As we adapt to living with covid-19 data that report how people die and in what numbers should be augmented by information on how they lived and what they valued
  • A critical question for decision makers and society is: what does a sustainable approach to the collection and use of data on covid deaths for public health purposes look like? 

In May 2021, the UK reached almost zero deaths per day from covid-19. But even with more than half the population vaccinated, the story is unlikely to end here and counts of covid-19 deaths will continue to influence government responses for some time to come.

Counting deaths across an entire country takes a serious investment in infrastructure. Coroners, clinicians, mortuaries, and care homes for instance are all connected by computers, databases and guided by rules and regulations that have evolved over decades. By comparison, the infrastructure built to gather covid-19 data has been assembled in a matter of months, with little time for public scrutiny.

As we adjust to living with covid-19 over the long term, it’s important that these infrastructures are adapted to changing circumstances and are ethically fit for purpose.

At the heart of all data infrastructures is the seemingly simple and objective task of counting1. But responses to the pandemic show that counting is anything but2. For instance, in August 2020, a review of counting procedures reduced the UK’s death toll by more than 5,000, to 41,329. The revised rules insisted that to count, deaths must have occurred within 28 days of a positive test3. The reason? A drive to standardise counting procedures across all four UK nations for clearer comparison, and concern that the overall mortality burden due to covid-19 was going over-reported.

This shows us that deciding what exactly it is that counts as a covid-19 death is crucial. This attribution relies on the judgement, experience and values of officials charged with certifying the cause of death, a public function that has in turn been transformed by covid-19 policies4.

It’s not just what you count that matters, but how you use the resulting data.

Counting deaths is critical in evaluating how current policies are working, but also in deciding what’s appropriate for the future. For instance, a range of epidemiological studies have shown the ways in which risks of covid-19 mortality have been exacerbated by underlying5 comorbidities6.

And research has shown that interventions on individuals’ behaviour such as lockdowns have themselves7 exacerbated some other causes8 of morbidity and mortality9.

Data about likely future deaths continues to be used in support of impactful, if blunt, interventions like international travel restrictions10. Such policies are agreed even by their advocates to be supportable only as temporary measures, and undesirable as permanent interventions.

But covid-19 deaths are a lagging indicator – the numbers of deaths from covid-19 today are largely determined by the numbers of people who were infected with the virus within the past 28 days. Even if counting covid-19 deaths is accurate and timely, there is a risk of mis-judging responses, or simply responding too late.

Now as death rates fall and covid-19 recedes in importance as a cause of death, it is time to take stock. For instance, a disproportionate focus on deaths risks neglecting emerging health issues like long covid11. And questions that arose earlier in the pandemic about how to distinguish deaths caused directly by covid-19 from those that are indirectly caused, or merely correlated, become newly important.

The critical question today then is what does a sustainable approach to the collection and use of data on covid-19 deaths for public health purposes look like?

We need to continue to adapt counting procedures and infrastructures so that they are in line with ongoing and emerging issues of public health and social care. National standardised data remains essential for understanding which groups are hardest hit by inequalities, and spotting locations such as care homes where mortality and morbidity are higher than expected.

But this national picture needs be complemented by data that can evaluate how well resilience, health and well-being are being cultivated in specific contexts, and for specific groups and communities12.

For instance, take Public Health England’s innovative Inclusion Health framework13. This guides health and care professionals in preventing ill-health and promoting well-being amongst vulnerable and socially excluded people. People who experience homelessness, vulnerable migrants, Traveller communities, sex workers, and other socially excluded groups who are not consistently accounted for in healthcare databases.

To evaluate how well frameworks like this are working, and to make sure the programme benefits those most in need, new ways of gathering data are required. For example approaches developed by anthropologists that don’t just count people, but count what matters to people14, through ongoing and systematic evidence-gathering within communities and social groups.

Combined, these data report how people die and in what numbers, but they also tell us something about how they lived and what they valued.

As we adapt to living with covid-19, how we count covid-19 deaths and what we do with resulting data will continue to evolve. Scrutinising the ethics and values of counting and adapting its infrastructures to new situations will be a critical task in meeting the challenges ahead.

References

1.         Kitchin, R. The Data Revolution: Big Data, Open Data, Data Infrastructures and Their Consequences. Lectures (Sage, 2014). doi:10.4000/lectures.16521.

2.         Stone, D. The 2017 James Madison Award Lecture: The Ethics of Counting. PS Polit. Sci. Polit. 51, 7–16 (2018).

3.         Department of Health and Social Care. New UK-wide methodology agreed to record COVID-19 deaths. GOV.UK https://www.gov.uk/government/news/new-uk-wide-methodology-agreed-to-record-covid-19-deaths (2020).

4.         Scobie, S. Measuring mortality during Covid-19. The Nuffield Trust https://www.nuffieldtrust.org.uk/news-item/measuring-mortality-during-covid-19-a-q-a (2020).

5.         Ssentongo, P., Ssentongo, A. E., Heilbrunn, E. S., Ba, D. M. & Chinchilli, V. M. Association of cardiovascular disease and 10 other pre-existing comorbidities with COVID-19 mortality: A systematic review and meta-analysis. PLOS ONE 15, e0238215 (2020).

6.         Herman, C., Mayer, K. & Sarwal, A. Scoping review of prevalence of neurologic comorbidities in patients hospitalized for COVID-19. Neurology 95, 77–84 (2020).

7.         Chen, S. et al. The early impact of COVID-19 on mental health and community physical health services and their patients’ mortality in Cambridgeshire and Peterborough, UK. J. Psychiatr. Res. 131, 244–254 (2020).

8.         Bambra, C., Riordan, R., Ford, J. & Matthews, F. The COVID-19 pandemic and health inequalities. J Epidemiol Community Health 74, 964–968 (2020).

9.         Wu, J. et al. Patient response, treatments, and mortality for acute myocardial infarction during the COVID-19 pandemic. Eur. Heart J. – Qual. Care Clin. Outcomes 7, 238–246 (2021).

10.      Kontis, V. et al. Magnitude, demographics and dynamics of the effect of the first wave of the COVID-19 pandemic on all-cause mortality in 21 industrialized countries. Nat. Med. 26, 1919–1928 (2020).

11.      Gorna, R. et al. Long COVID guidelines need to reflect lived experience. The Lancet 397, 455–457 (2021).

12.      Taylor, L. The price of certainty: How the politics of pandemic data demand an ethics of care. Big Data Soc. 7, 205395172094253 (2020).

13.      Public Health England. Inclusion Health: applying All Our Health. GOV.UK https://www.gov.uk/government/publications/inclusion-health-applying-all-our-health/inclusion-health-applying-all-our-health (2021).

14.      Bear, L. A right to care – the social foundations of recovery from Covid-19. https://www.lse.ac.uk/anthropology/assets/documents/research/Covid-and-Care/ARighttoCare-CovidandCare-Final-2310.pdf (2020).


This work is part of the Data use workstream of the UK Pandemic Ethics Accelerator.

About the Accelerator

The UK Pandemic Ethics Accelerator is a new initiative that brings UK ethics research expertise to bear on the multiple, ongoing ethical challenges arising during pandemics. We provide rapid evidence, guidance and critical analysis to decision-makers across science, medicine, government and public health. We also support public debate on key ethical challenges.

Funding

The UK Pandemic Ethics Accelerator receives core funding from the Arts and Humanities Research Council as part of UKRI’s covid-19 funding. Grant number AH/V013947/1.


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