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The Office for National Statistics (ONS) have released provisional counts of the number of deaths registered in private homes in England and Wales in 2020 and between January 2020 to June 2021.
Prof Kevin McConway, Emeritus Professor of Applied Statistics, The Open University, said:
“One feature of the weekly ONS releases giving provisional figures for death registrations in England and Wales, going right back to the early days of the pandemic, has been that the number of deaths occurring in private homes has been running well above the average for the five years 2015-19, before Covid-19 arrived. In the jargon, there have been considerable numbers of excess deaths in people’s own homes. During the first terrible Covid-19 wave in spring 2020, and again in the wave (the second or third depending on one’s particular definition) at the beginning of 2021, quite a lot of those excess deaths at home were directly due to Covid-19 – but in fact deaths where Covid-19 was mentioned on the death certificate never made up anywhere near the majority of the excess deaths at home. Indeed, outside those two peaks, relatively few deaths at home involved Covid-19 directly.
“For very long periods of time, essentially since June 2020 except briefly during the peak of deaths in early 2021, we’ve seen very roughly 100 excess deaths at home, every day, that didn’t directly involve Covid-19. For instance, in the most recent four weeks for which death registration data are available, covering 2-29 October, there were in total 12,615 registered deaths at home in England and Wales, compared to the five-year average of 9,397, so 3,218 excess deaths. Of those home deaths, just 247 mentioned Covid-19 on the death certificate, so there were 2,971 excess deaths at home that did not directly involve Covid-19, in 28 days. That’s about 106 a day. And, with a few ups and downs, that’s been a pretty typical position right since June last year at least.
“I’m not the only one who has been asking questions about the reasons for this. Home has been the only category of place of death where there have consistently been excess deaths since the start of the pandemic. Obviously there were distressingly large numbers of excess deaths in care homes in the first wave, and also in hospitals during the first wave and in autumn and winter 2020-21, but apart from that there have been considerable periods where deaths in hospitals and in care homes were running below the five-year average, or quite close to it.
“What has been causing these excess deaths at home? The weekly ONS death registration bulletins for England and Wales have cast little light, for causes other than Covid-19, and there hasn’t been much more detail in the regular monthly mortality bulletins. The Scottish government has provided rather more detail*, on a weekly basis. In Scotland, where deaths at home have also been running above average, many of the excess home deaths have been caused by the most common causes of death, particularly those that tend to affect elderly and, often, frail people.
“Today’s ONS bulletin in deaths at home shows that, broadly, the same has been true in England and Wales. The bulletin provides data only up to June this year. Its publication was original scheduled for 22 September, and was delayed ‘to allow time for further quality assurance’, according to ONS. However, I’d be surprised if the general position on deaths at home has changed much since June. Much of today’s bulletin describes the overall pattern of deaths at home in England and Wales, and how they have remained consistently above the five-year average, in the ways I have already described and that were generally known already from the weekly and monthly regular releases. The bulletin points out that excess home deaths were more prevalent in older people, which is hardly surprising, though they were to some extent spread across all age groups.
“For me, the most interesting new information in today’s bulletin is on causes of deaths at home. The pattern of causes is rather different in detail for men and women, but there are broad similarities. In general, most home deaths were caused by the causes that have been the most common for many years, including heart disease, strokes, dementias, and some cancers, and of course, in addition, fairly large numbers were caused by Covid-19. What’s remarkable, though, is that the number of home deaths caused by dementias and Alzheimer’s disease in 2020 was 73% above the five-year average for men, and 61% above the five-year average for women. Those are huge increases in dementia deaths at home. There were also large increases compared to the five-year average for several cancers (cancers of the lung and airways up 21% for men and 33% for women, bowel cancers up 36% for men and 37% for women, prostate cancer up 44% (men) and breast cancer up 37% (women)). There were also considerable increases in deaths from heart disease and strokes. These increases are not simply reflecting the position in other places of death – overall numbers of deaths caused by these diseases do change over time, but have not recently changed by such a large extent. What seems to be happening is that deaths at home from many leading causes have increased, which indicates that, during the pandemic, many people are dying at home from many causes, who would in previous years have died in a hospital, or maybe a care home or hospice.
“What today’s bulletin can’t tell us is why this has happened. ONS rightly suggest that it is probably an indirect effect of the pandemic, and they say, for example, “This could be because of a combination of factors which may include health service disruption, people choosing to stay away from health care settings or terminally ill people staying at home rather than being admitted to other settings for end of life care. More investigation is needed to understand this.”
“This all seems very plausible to me, and I very much agree that more investigation is needed – but that investigation can’t just involve what is written on death certificates. They say when and where people died, how old they were, and what caused their death – but they don’t say why terminally ill people didn’t go to other health care settings, or whether that was a deliberate choice or driven by what services were actually available at the time. And, crucially, they don’t really tell us anything about the end of life care for the people who died. Was it adequate? Were people pleased to have been able to spend their last days at home, or did a lack of support cause serious problems? Did people die earlier than they otherwise might have, because there was no care available except at home? Doubtless there’s a range of experience on these matters. Who is researching it?”
Dr Lucy Pocock, a Primary Care Research Fellow specialising in older people, University of Bristol, said:
“In order to die well at home, patients need access to high quality round-the-clock care. However, community services are significantly overstretched and social care is in crisis. Further work should be undertaken to understand the quality of care given to people who are dying at home, to enable us to ensure that appropriate care is commissioned and resourced.”
Prof Sir David Spiegelhalter, Chair, Winton Centre for Risk and Evidence Communication, University of Cambridge, said:
“Ever since the pandemic started there has been a sustained shift towards people dying at home, and this analysis reveals particularly large increases in deaths from dementia and Alzheimers and cancer. Many people would prefer to die at home, and so this could be a positive move, provided there is adequate end-of-life support for the individual and the families. This suggests we do need good data on the quality of peoples’ deaths, wherever they occur.”
All our previous output on this subject can be seen at this weblink:
www.sciencemediacentre.org/tag/covid-19
Declared interests
Prof Kevin McConway: “I am a Trustee of the SMC and a member of its Advisory Committee. I am also a member of the Public Data Advisory Group, which provides expert advice to the Cabinet Office on aspects of public understanding of data during the pandemic. My quote above is in my capacity as an independent professional statistician.”
Prof Sir David Spiegelhalter: “I am a Non-Executive Director of the UK Statistics Authority, which oversees the work of the Office for National Statistics.”
None others received.