Deaths at home have increased by a third across the UK during the COVID-19 pandemic. Dying at home is supposed to be an indicator of ‘quality of death’ and this is enshrined in national end of life policies across the UK. In Scotland, place of death is one of four indicators of good quality palliative and end of life care1. So why, then, has ‘shock’ been expressed at the recent increase in home dying? Are we no longer to believe dying at home is a good thing? Recent media coverage seems to ignore the long-standing cultural ideal that ‘home is best’ when it comes to death, and instead feeds into the moral panic more usually seen around the lone deaths of those living and dying alone at home2. What has happened during the pandemic to challenge the view that dying at home is best, and what does this tell us about our knowledge of what dying at home is really like across all strata of society?
The fact that national end of life care policies prioritise home dying stems from deep-seated cultural ideals linking dying at home with notions of the ‘good death.’ Home is deemed to embody various idealised qualities or values such as privacy, intimacy, warmth, comfort and autonomy3,4. Large-scale public attitudes surveys5,6and research data7 both reveal that the majority of British adults (including the general public, patients, and carers), regardless of socio-economic status, would prefer to die in their own home7. The 2012 British Social Attitudes Survey, for example, reported that two thirds (67%) of British adults surveyed would prefer to die at home8. The most recent 2015 National Survey of Bereaved People (VOICES) survey in England found that most respondents believed their relatives had wanted to die at home (81%), while 8% said they had wanted to die in a hospice, 7% in a care home, and 3% in hospital. Whilst there has been some interesting criticism of the methodology used in these national surveys9, there is no denying the long tradition of individualism in Anglophone countries which strongly underpins the rhetoric that ‘home is best’. More often than not, home is seen as the antidote to the overly medicalised, anonymized, and bureaucratized deaths which are often seen to typify the experiences of people dying in hospitals in the UK.
Home dying in the pandemic
How does the pandemic change the narrative that ‘home is best’ then? The statistics showing an increase in home dying during the pandemic were reported negatively in the media as “terrifying” and “heart-breaking” or as an example of misplaced stoicism, as this quote about people dying from untreated strokes shows:
“Coronavirus: ‘Stiff upper lip’ sees more people dying at home instead of dialing 999″
The increase in deaths at home is reportedly due to: fewer people attending hospital in acute emergencies; planned surgeries being cancelled; and people not visiting their GP or arranging hospital visits to investigate health concerns. However, the rise is also due to an increase in families either resisting a relative’s move into a care home, or removing their relative from a care home, presumably for fear of them contracting COVID-19. Recent figures from March to September 2020 show a 79% increase in deaths at home and a 40% decrease in deaths in hospital in England for people with dementia and Alzheimer’s disease compared to the five year average. Dying at home during COVID-19 has become less an issue of choice, as promoted in end of life policies, and more driven by fear around dying in isolation in a care home or hospital or contracting COVID-19.
Tommy was diagnosed with dementia in 2011. He isn’t scared to die – but he’s terrified of going into hospital.
Admissions to care homes have reduced, with self-funded admissions at an average 35% of the same period in 2019 and local authority funded admissions standing at an average of 72% of the number received in the same period in 2019.
In the case of the person who is experiencing symptoms of a heart attack but is too fearful to go to hospital for fear of contracting COVID-19 or over-burdening NHS services, the negative association with dying at home would be entirely justified. For example, there has been a 50% drop in people attending Accident and Emergency departments for a heart attack across the NHS during the pandemic. But given the other types of home dying – people with dementia or other pre-existing life-limiting illnesses – which are captured by the overall statistics, it is a surprise to us that a more nuanced picture has not emerged.
Our surprise probably has a lot to do with the fact that while in policy terms dying at home is supposed to be an indicator of quality of death, the quality of a person’s dying may actually have more to do with the level of familial and professional support they can access while at home at the end of life, as well as the perception of the suitability of the home environment. During the pandemic, many more people have had the experience of dying at home but perhaps without the families and loved ones they may have hoped would be with them. In addition, there has been reduced support from services in the community resulting from a reduction in face-to-face support. Dying alone while at home remains a real possibility, although it is difficult to quantify how many people have had this experience.
Choice and support
Choice may be a critical factor here in determining how dying at home is viewed and represented in the media. Whether people with pre-existing terminal illnesses are making a conscious choice to die at home or doing so because hospitals are felt to be out of bounds, may well put a different slant on things. Whether professional support can be offered to the person/family at home is also significant. Home visits from health and social care professionals have been reduced during the various lockdowns to adhere to guidance. The isolation felt by those living alone and shielding has been well reported. Feeling lonely was reported by 1 in 10 people prior to the first lockdown and increased to 1 in 4 during the lockdown. We do not know if the people in this survey live alone but we do know that older people are disproportionately affected by social isolation10.
All these factors – lack of choice, lack of support and social isolation – may well be working against the idealism usually associated with home dying. There are fears buried within the negative reporting of these national statistics that people were alone in their homes when they died. Social isolation and abandonment at the end of life are deemed the antithesis of the ‘good death’, and both have been disturbing features of some of the hospital deaths from COVID-19 during the first wave as a result of fear of contagion. Dying alone in the community of non-COVID, pre-existing diseases, even if this is something you may have planned for and wanted, seems to be tarnished with the same public anxieties or ‘moral panic’. The idea that dying alone at home might be a choice for the rising number of people who live alone into an extended old age is seldom countenanced in media reporting.
Dying in the Margins
In our Economic and Social Research Council funded research project, Dying in the Margins, we are specifically interested in experiences of dying at home for those experiencing financial hardship and living in deprived areas.
The ‘good death’ at home has perhaps always been more problematic for those experiencing material deprivation and insecure tenancies. We do not know what it is like to die at home when you have fewer choices about the type of property you live in, particularly because the condition of rented housing stock, where many of those experiencing poverty live, requires huge investment. In England, an investment of £32 billion would be required to bring ‘non-decent’ housing stock up to standard which represents 4.3 million homes that are considered unfit to live in. In Scotland 1 in 10 homes have problems with damp and condensation, 619,000 households suffer fuel poverty and 132,000 people are waiting for local authority housing with 17 households becoming homeless every minute. We do not know what dying at home is like for people in less than adequate accommodation and this is one aspect our project will explore, as we work to uncover the broad social and health inequities experienced by those in our communities who are less likely to die in a hospice or receive palliative care.
The pandemic has laid bare the stark inequalities in our communities11. It has changed the experiences of home dying for all socio-economic groups with a reduction in face-to-face support, the curtailment of choice, and an increase in social isolation. But we would argue that those who were experiencing poverty before the pandemic already had restricted choices and less financial recourse to buy-in the support they required. Home may never have been ideal for those on insecure tenancies or living in cold, damp properties, experiencing fuel poverty or waiting in temporary accommodation for a suitable home. It is our aim to find out what dying at home looks like for those experiencing poverty and to get behind the statistics to gain a full picture of the choices, support and connectedness available to those too often omitted from the narrative that ‘home is best’.
- UK National Palliative and End of Life Care Partnership. Ambitions for Palliative and end of life care: A national framework for local action 2015-2020. 2015; 1–6.
- Turner N, Caswell G. Moral ambiguity in media reports of dying alone. Mortality 2020; 25: 266–281.
- Gott, M., Seymour, J., Bellamy, G., Clark, D. & Ahmedzai, S. 2004. Older people’s views about home as a place of care at the end of life. Palliative Medicine, 18(5):460-7.
- Twigg J. The spatial ordering of care: public and private in bathing support at home. Sociology of Health and Illness 1999; 21: 381–400.
- Office for National Statistics. National Survey of Bereaved People (VOICES), 2015. 2016; 1–18.
- Macmillan Cancer Support. No Regrets: How talking more openly about death could help people die well (PDF) (2017).
- Gomes B, Calanzani N, Gysels M, et al. Heterogeneity and changes in preferences for dying at home: A systematic review. BMC Palliative Care, 2013; 12(7)
- National Centre for Social Research. 2012. British Social Attitudes Survey 30: Dying (PDF) (Accessed 15 Dec 2020)
- Hoare S, Morris ZS, Kelly MP, et al. Do patients want to die at home? A systematic review of the UK literature, focused on missing preferences for place of death. PLoS One 2015; 10: 1–17.
- Hwang. Tzung-Jeng, Rabheru K, Peisah C, et al. Loneliness and social isolation during the COVID-19 pandemic. International Psychogeriatrics, 2020; 32: 1217–1220.
- Marmot M, Allen J, Goldblatt P, et al. Build Back Fairer: The COVID-19 Marmot Review. The Pandemic, Socioeconomic and Health Inequalities in England – full report and executive summary; (2020, accessed 15 December 2020).
Blog content reflects the views of the author(s) and not the position of Policy Scotland or the University of Glasgow.