“Too many people are dying in hospital against their wishes” reads an article headline in the Guardian from 2010. In 2018 the same newspaper reports a call for NHS to do more to help terminally ill people die at home and a third headline reads “Thousands of cancer patients denied wish to die at home”.
The message is clear: people should die at home. There are numerous examples of the statement that ‘the majority of people want to die at home’ in the news, academic articles and popular culture. What people mean when they say this is rarely unpacked. More importantly, COVID-19 is challenging this notion and offers an opportunity to reflect on what we actually mean when we say we want to die at home.
Place of death has become a key indicator of good end-of-life care in the UK. This drives the aim to reduce hospital dying and to increase the amount of home deaths. COVID-19 clearly shows the problematic nature of equating place of death with good dying. It has been argued elsewhere that COVID-19 is challenging our notions of a good death, but I would like to take this further and suggest that COVID-19 is challenging, and should be challenging, our understanding of ‘home’.
The reality of dying at home might be far from the romantic ideal of lying in bed, surrounded by loved ones. The current pandemic painfully shows what home deaths can actually look like. This is also reflected in newspaper headlines:
It is suggested that people are afraid to call emergency services and in the UK alone 8000 more people have died in their own homes since the start of the pandemic. Realistically, as many places are in lockdown, it is unknown how many people have died at home. The data on current home deaths is limited and people without social networks could die unreported or unnoticed.
While we are currently acutely aware of this, many people in non-pandemic times have died in unfortunate circumstances i.e. through accidents in the house, because of domestic violence or poverty. Death at home is not always a ‘good death’ but as deaths in ‘usual place of residence’ are statistically considered ‘good deaths’ this does not offer space to think of the complexity of home deaths.
Death is always messy, and the idealised image of home is not helpful in fostering discussions about people’s wishes. Research on people’s wishes regarding place of death is limited and does not account for the fact that people might prefer to die in hospital but are afraid to say so, or that they might change their minds about what they want.
As we are all dying for the first time, we can mainly decide on things we don’t want based on what we have seen with others. Hypothesising about our own endings is complicated and there is little space to be inconsistent about how and where you want to die. It is therefore not surprising that people hang on to ‘home’ as the imageries around this word are linked to safety, comfort and relationships.
Home as a concept has received much academic attention and considered to be a place, space, emotion or feeling, a country, or relationships, amongst other things. But when discuss ‘home’ we often assume that the person we speak to has the same understanding of home. Home is taken for granted. Home is complex. Home can be dangerous. Home can be unsafe. So, while initially our minds might go to a physical place, to the house, the notion might actually be more abstract. When people say ‘I want to die at home’ they might mean, I want to be safe, I want to be surrounded by loved ones, or – and this is also very important – I want to die alone.
There are also numerous people who are not able to voice their wishes, or do not have any preferences regarding their place of death. Consequently, it is important to have ongoing conversations with loved ones about what they want, and don’t want, at the end of life. This might be difficult as there will always be competing ideas of what dying should look like. It is important to give space to the voices and wishes both of the dying person as well as those surrounding them.
Images of death and dying, and discussions about people potentially dying, have become part of the daily news cycle and every day the message is hammered home that we are all mortal. Conversations about death and dying are important to start at any given point in life and we need to acknowledge that there is no ‘one-size-fits-all.’
If we acknowledge that our understandings of home are individual and might change over time, we can also give space to the idea that what we want at the end of life is individual and might change. So tell someone today what you mean by ‘home’ and how this relates to your dying, and maybe speak to that person again a year from now (when hopefully we can roam about again) and see to what extent your understanding has changed or stayed the same. As we are experiencing life and death for the first time, we are all making it up as we go along. Remember, feeling uncertain about your hypothetical ending is completely fine.
Renske Visser is a Medical Anthropologist interested in the meaning of home, ageing, dying and death. She is currently a Research Fellow at the University of Surrey conducting research on Cancer Care in English Prisons.