Invisible deaths: understanding why deaths at home increased during the Covid-19 pandemic

One of the untold stories of the Covid-19 pandemic is the dramatic rise in the number of people dying at home. Between the start of the pandemic in March 2020 and 28 May 2021, over 59,000 (39 per cent) more deaths occurred at home in England and Wales than the average number of home deaths in 2015-19. Moreover, the sustained increase in people dying at home has been evident throughout the pandemic and shows no sign of abating.

What’s known about these deaths? The vast majority of the 59,000 excess deaths at home were due to all too familiar causes such as cancer, dementia, heart disease (see figure below). Few involved Covid-19: most virus-related deaths occurred in hospitals (almost 70 per cent), followed by care homes (23 per cent); only 6 per cent occurred at home. Deaths in hospital from other causes fell by more than 74,000 (24 per cent) compared with the 2015–19 average, and were somewhat lower also in care homes.

In 2015–19, before Covid-19 came to our shores, one-quarter (24 per cent) of all deaths occurred at home; during the pandemic (March 2020 to 28 May 2021), deaths at home from causes other than Covid-19 increased to one-third (33 per cent). The corresponding figures for deaths in hospital fell from 46 to 37 per cent.  

'The Office for National Statistics (ONS) data suggests strongly that the significantly increased numbers dying at home during the pandemic were people who, in a non-pandemic year, would likely have died in hospital.'

It’s unlikely that many of the excess home deaths are ‘collateral’ damage resulting from lack of health care, because the total number of non-Covid-19 deaths to date has in fact been lower, not higher, than in recent pre-pandemic years. Taken collectively, therefore, The Office for National Statistics (ONS) data suggests strongly that the significantly increased numbers dying at home during the pandemic were people who, in a non-pandemic year, would likely have died in hospital.

Why does this ‘displacement’ of death from hospital to home matter? Although Covid-19 has dominated our lives for more than a year, very little is known about the increased numbers dying at home. We know most were older people, and deaths at home in 2020 were higher than the 2015–19 average for most causes of death. Deaths at home from diabetes, Parkinson’s disease, and dementia and Alzheimer’s disease were over 60 per cent higher than the 2015–19 average. Deaths at home from the main cancers were more than 40 per cent higher, while falling by 22 per cent in hospices and nearly 30 per cent in hospitals.

However, very little is known about the circumstances of these deaths, for example, whether those who were dying had a choice about place of death. It’s widely reported that most people prefer to die at home, but the evidence on this isn’t entirely clear as reported preferences often exclude the views of those with no preference or not asked; the preferences of the general public, family members, caregivers and the dying can differ; and preferences depend on timing and can change. During the pandemic fear of infection or visiting restrictions may have deterred some people with a terminal illness, or their family or caregivers, from going to hospital. Alternatively, Covid-19-related pressures on acute health care services, in particular, may have precluded a choice for some. 

Either way, more information is urgently needed about the increased numbers dying at home. Did they have adequate end of life care, for example, access to pain relief if needed, nursing and palliative care, and other support? Pre-pandemic, in surveys of bereaved relatives, care quality for those dying in hospital was rated lower than for those dying at home overall and on several parameters (eg, respect and dignity, care co-ordination). However, availability of adequate pain relief (complete pain relief all of the time) was least frequently reported for those dying at home (19 per cent) compared with those dying in hospital (40 per cent), care homes (43 per cent) or hospices (64 per cent). Do community palliative care services have the capacity to respond to the increased numbers of people now dying at home? Evidence points to serious shortfalls in palliative and end of life care during the pandemic, with a survey of bereaved carers also showing three quarters of people who died at home may not have received the health and social care they needed.

'More information is urgently needed about the increased numbers dying at home. Did they have adequate end of life care, for example, access to pain relief if needed, nursing and palliative care, and other support?'

Numerous government strategies¹ and a National Institute for Health and Care Excellence (NICE) quality standard have aimed to improve end-of-life care for people dying in all settings, with a view to ensuring informed choice and personalised, integrated care that meets the needs and preferences of the dying and supports their families and carers. However, even in pre-pandemic days, standards of care didn’t always meet the high ambitions of these strategies. For example, inequalities in access to and quality of end-of-life care, variations in aspects of palliative care (such as pain control) related to care settings, inadequate involvement in care decisions, poor communication, fragmented care, inadequate training and lack of 24/7 care were apparent even before Covid-19. 

It’s very likely that the place of death for many has shifted from acute to community settings without proper planning and resourcing, including of nursing, palliative, social and end-of-life care. The shift towards more people dying at home may, like many other changes induced by this pandemic, be here to stay. To ensure everyone dying at home has a dignified, comfortable, pain-free and supported death demands a managed shift to a community-led end-of-life care model that is proactively planned, adequately resourced, staffed by a trained workforce, timely, equitable and appropriate to need. With people still dying at home in unprecedented numbers, it behoves the government to ensure that their final days befit what an affluent, caring and just society should ensure for all its citizens.