Did they receive care and compassion from loved ones or did they die alone, fearful of getting infected in hospital?
From the start of the pandemic to 24 September 2021, deaths at home in England and Wales have been 37% higher than the 2015-2019 average, according to the Office for National Statistics.
For every three people who used to die at home, four now do. That’s more than 71,000 “excess” deaths, only 8,500 of which involved Covid. Even as mortality elsewhere fell back to past levels, dying in private homes has persistently remained above average. A natural question arises: are these “extra” deaths or a shift from other locations?
Fortunately, National Records of Scotland publishes excess death calculations by location and major causes of death. Its most recent data shows the leading causes of death were cancer, heart disease and stroke. In 2021, the combined total for these causes was only about 1% above the 2015-2019 average, with around 260 extra deaths. However, deaths from these causes at home were 36% higher than recent years, with a corresponding decrease in care homes and hospitals. These additional deaths at home were not “extra”, but resulted from a major, systematic change in where people were dying.
So what’s the reason for this change and, perhaps more importantly, what was the quality of these deaths? How many were free of pain and experienced intimate care and compassion from loved ones and how many have died at home alone, fearful of getting infected in hospital? Existing statistics struggle to answer these important questions.
NHS England has sought to “personalise” end-of-life care in its long-term plan. Reported statistics from surveys and patient records about where people wish to die can exclude “missing” responses, such as when no preference is forthcoming. It is unclear if the shift towards dying at home is, on balance, a positive or negative development.
Every family has to deal with a death and live with its aftermath. In the words of Sam Royston, director of policy and research at Marie Curie: “It is critical that we ensure that those who die at home have all of the support and assistance they need for the best possible death.”
David Spiegelhalter is chair of the Winton Centre for Risk and Evidence Communication at Cambridge. Anthony Masters is statistical ambassador for the Royal Statistical Society