The world stopped making sense when my sister died. She wasn’t supposed to die young, with a small child, most of her life still to be lived – it was an unprecedented event. In order to try and find meaning to my inchoate grief, I began to explore others’ stories and experiences with dying and death. Through studying my own culture and others I came to understand that of course my sister’s death wasn’t unprecedented; lots of people die young, with many never making it to adulthood. At the same time, in widening my perspective beyond the personal, I was able to connect and give meaning to my own experiences. I used other peoples’ experiences to make sense of my own. Eventually I became an anthropologist, dedicating my career to exploring the many ways we collectively try to make sense of, and organize, dying and death.
With COVID-19 we are currently being told that we are living through an unprecedented event, and for many of us that it is true. However, if we widen our perspective in both time and space we can see that of course these are not unprecedented times. Humans have been living with, and dying from, infectious disease for thousands of years – we have evidence that tuberculosis was part of the human ecosystem as far back as 70,000 years ago. Although too numerous to recount systematically here, some notable historic infectious disease outbreaks include the Antonine Plague (A.D. 165-180) estimated to have killed 5 million, the Plague of Justinian (A.D. 541-542), which may have killed up to 10% of the world’s population, and the Black Death (1346-1353) with various estimates of 75–200 million dead. My colleague Joe Wood recently provided an insightful post about Daniel Dafoe’s semi-fictionalized account of the Great Plague of London in 1665. Less well known but equally devastating were the North American Plagues from the 1500s onwards, which are estimated to have killed nearly 90% of the Indigenous population. More contemporaneously, most of us are now familiar with the comparisons of COIVD-19 with the Spanish Flu Pandemic of 1916-1918, the 1968 Flu Pandemic, the Polio Outbreak in the 1950s, the more recent outbreaks of the AIDS Epidemic in the mid-1980s, as well as Ebola, SARs, MERs.
This gruesome ‘highlights’ reel of infectious disease outbreaks evidences that living with, and dying from, infectious disease is an ongoing part of the collective human experience. Globally about 25% of deaths continue to be caused by infectious diseases, resulting in at least 10 million deaths per year. Further, as my colleagues Drs. Naomi Richards and Jane Rowley point out, COVID-19 brings into sharp relief many already long-standing – if often invisible – socio-economic challenges in achieving a ‘good death’.[1] At the same time, our responses to this latest pandemic evidence new ways of thinking about and organizing life’s end, as seen for example in the increase in advance care planning, ethical deliberations in rationing health care resources, and robust debates about how to ‘properly’ count COVID-19 deaths.
How might existing research, interventions, and insights about the end of life help us collectively respond to, and make sense of our individual experiences of, COVID-19? In turn, how can our current experiences shape new understandings and approaches to caring for those who may be nearing the end of life, regardless of cause?
These are the kinds of questions we will be tackling in our new End of Life Studies Program at the University of Glasgow, starting January 2021. As part of this initiative, we have created a free three-week online course “End of Life Care: Challenges and Innovation”, beginning June 1st. You can find out more about it and register here. We’ve had thousands of people from more than 100 countries participate in our earlier runs of the course. One of biggest surprises has been seeing how much learners appreciate being able to talk with each other about their own experiences and beliefs as they work through the course material.
As I continue on my own personal and
professional ‘sense-making’ journey, I warmly invite you to join me and my
colleagues as we explore dying and palliative care practice around the world
and evaluate new trends and ideas surrounding end of life care issues,
including COVID-19. Together we will learn from each other, and good ideas are
always a collective endeavour.
Feedback about “End of Life Care: Challenges and Innovations”
“Thank you…I’ve taken other palliative care courses which have covered EOLC etc. but this course has led me to reflect more about the complexity of the issues”.
“Well organised and excellent course. Gave me lots to think about and I enjoyed the input and discussion with other learners. Thank you”.
[1] Richards, Naomi and Rowley, Jane. Structural inequalities and dying at home during COVID-19, Policy Scotland, 12 May 2020, https://policyscotland.gla.ac.uk/structural-inequalities-and-dying-at-home-during-covid-19/