Emma Kirby, Erica Borgstrom and John I MacArtney
For the past few months, daily headlines and websites have tracked the development and progress of COVID-19. The number of reported deaths across and within countries dominates the headlines. Scientists, clinicians, and just about anybody are sharing graphs and tallies of infection and deaths drawing upon a lexicon of previously alien terms like flattening the curve, social distancing and herd immunity.
For many, the daily exposure to dying and death is new, not least because the pandemic presents a new lens through which to view our mortality. As the first critical phase in some countries, for now, seems to be passing, attention is turning towards how the pandemic is being managed, experienced and accounted for. And none more so in relation to dying. As a society, how do we make sense of mortality, and what (if anything) does this fascination with counting the infected and dead during this pandemic show us about the ways people understand the end of life.
Much emphasis within media coverage has been on epidemiology, drawing on research that focuses on the incidence and distribution of disease (among other things). In the context of COVID-19, most obviously this has centred around mortality counts and rates, cause of death, and the use of statistics to describe, make sense of, project, predict and track the course of the pandemic and beyond.
This emphasis is important: charting the development of disease and recording it is a most pressing concern, and how governments (and even individuals) draw upon the advice of epidemiologists has been critical for saving lives. Their numbers and easily digestible infographics are used by politicians and the news media to help impose a sense of perspective, from the macro tallies of national infected and dead to the implications of microbiological infection rates. What matters, it has often seemed, is who counts and can be counted.
Many sociologists have long argued that how and to what mortality is attributed has never been a neutral act. And so we find that the armchair epidemiology that has come with this pandemic can reflect a shared sensitivity and vulnerability to death and dying. Not just in terms of the physical threat of the coronavirus, but of the difficulties people experience when thinking about death: our fears, emotions, values. Over the past weeks, we have noticed the following concerns raised in relation to the pandemic and what they can tell us about the ways people are thinking about death and grief.
Initially, our social media feeds began to be filled with posts that starkly evaluated political and nation-based prevention and containment strategies against daily death tolls. They warned of not being cautious enough or implementing the wrong kinds of public health measures. Others worried about the number of available ventilators in hospitals, and what this might mean for rationing who is potentially left to die – especially as news from Italy began to spread. We’ve read how some rationalise the deaths of so many in favour of preserving the lives of others.
Older people, those with pre-existing or chronic conditions, or so called COVIDiots are seen as collateral damage in contrast to intolerable unjust deaths of the young, the healthy, or those who work to care and support us. Social norms around vulnerability – suggesting that we can afford to lose some of the less able in our society – are laid bare in their ugly light, forcing us to decide if, and which, deaths are acceptable, inevitable, and so on. We have come to learn that “following the science” (and the capacity to act upon it) is as much a political as it is statistical.
As the weeks pass, questions arise like ‘Should our children return to school, and what will that mean for the number of deaths?’ This makes us ask, what does discussion of ‘acceptable’ rates of death mean for our society? Recent discussion has exposed the extent of disagreement related to courses of action, quality of life, and quality of death, with politics, economics, philosophy and epidemiology offering simultaneously complementary, cohesive and fractured or incongruous responses to these insurmountable questions.
This lays bare what social scientists have long known about death and dying: not everyone shares the same views, and we cannot assume we as a society can agree on what ‘acceptable’ means in this context.
Moreover, which deaths (should) count is also not straightforward. For all of the comparison of death rates across countries, ‘official’ statistics vary in the way they are compiled, the rates of testing and the recording of ‘cause’. This has implications beyond auditing accuracy: The means through which this is determined can and will impact how people experience these deaths and bereavement. Those who feel a death has been ‘mislabelled’, for example, can experience disenfranchised grief, or be excluded from COVID-specific bereavement support.
As the death toll rises in some countries, like the UK, the cause of a person’s death becomes a daily question. Questions arise about how people make sense of non-COVID-19 deaths during a pandemic. Are these perhaps ‘normal’ deaths that were anticipated, but perhaps accelerated or ‘brought forward’ by a lack of resource-paralysed health and social care systems and social isolation?
When campaigns have asked people to talk about dying they did so to provide a sense of control, choice, and as much certainty as possible. Now people discuss their fear of dying alone, without family or even a caring health professional by one’s side. Or about not having time to say goodbyes – either at the bedside or due to funerary restrictions. Regardless of the cause, such discourses challenge the focus on just the numbers and what dying means, highlighting not just the personal, but also the social nature of death and dying.
As societies look towards whatever comes next in the COVID-19 pandemic, we urge all to reflect upon how their use of numbers can impact life, death, and grief. Counting the sick and the dead can sometimes help to make sense of the magnitude of what is happening at the individual, national and international level. But we must be wary of how a focus on the numbers can distance us from the people we are counting and those we are counting upon.
Who dies, how, when and where are not simply matters of epidemiological happenstance or individual choice but reflect the values of our societies and politics. We will continue to tally up our dead, but it will be the toll of what that number means that will, ultimately, count.
Emma Kirby (@DrEmmaKirby) is a sociologist and Scientia senior lecturer at the University of New South Wales, Sydney, Australia. Erica Borgstrom (@EricaBorgstrom) is a medical anthropologist and lecturer at the Open University. John MacArtney (@johnmacartney) is a sociologist of health and illness and Marie Curie senior research fellow.