Caring for the dead at home: an exploratory study of home deathcare in England

ABSTRACT

At a time when the natural death and home deathcare movements are gaining traction both in the UK and elsewhere, this article details an exploratory project on the barriers to and potential for caring for deceased people at home in England. A two-phase study, the paper uses data from a discourse analysis and interviews with deathcare professionals to show that there is limited information online on keeping the deceased person at home, and that participants felt that a lack of awareness was a significant barrier to families being able to make an informed choices about home deathcare. Including poor information provision, the paper identifies five reasons as to why there is a low uptake of home deathcare in England and makes recommendations for how each of these barriers may be overcome.

KEYWORDS:

• Bereavement
• body
• deceased
• family
• funeral
• home
• home deathcare

Introduction

When death occurs in England, it is common practice for the deceased person to be removed quickly from the site of death to be kept in a mortuary or funeral home’s chapel of rest until the day of its disposal (Frisby, 2015). For most people, exposure to the body is limited to close family and friends in private viewings on funeral director’s premises (Harper, 2010b; Walter, 2013) and does not typically involve any bodily care. Such a move towards outsourcing care and body storage has been linked to a broader desire to sanitise (Strange, 2005) and conceal death (Clark, 2002) and contrasts with how a body was dealt with in the pre-twentieth century where, up until the burial, it was commonly kept and cared for in the home environment (Frisby, 2015). During this interim period, the body would be washed and laid out on the kitchen table or bed by either the family or a person identified as the individual who did the ‘laying out’ locally (usually a woman), and extended family and friends would come to pay their respects (Strange, 2005). With the establishment of the funeral profession (Parsons, 2018), population growth and increasing urban density, and the changing role of religious belief in funerary ritual, alongside public health improvements such as the advent of central heating and better heat retention in the home throughout the twentieth century, this practice steadily declined (Strange, 2005) to the extent that it is so rare no figures exist. Yet today there exists technology such as dry ice and cooling systems developed by companies like Flexmort (2013), to keep the body cold in situ and slow decomposition. While this practice is now part of regular care for deceased children in hospices, it has yet to routinely move into the home (see Hackett & Beresford, 2021) and has not transitioned to adults. One potential explanation for this is the number of adults who die in institutions (Clark, 2002), with around half of all deaths occurring in hospital, 20% in care homes and 6% in hospices (Public Health England, 2018). In other words, nearly three-quarters of all deaths across England occur outside of the home, and once a funeral director is appointed the body is typically moved to their premises (Rugg & Jones, 2021).

Death taking place in institutions does not reflect where the majority of people would prefer to die, however (Office for National Statistics, 2016), and as a result, dying at home has been prioritised within policy (Borgstrom & Walter, 2015; Department of Health, 2008). Underpinned by the assumption that to die at home constitutes a ‘good death’ (Curie, 2021), this policy ceases at the time of death and does not extend to the body remaining at – or returning – home, although anecdotal evidence from those involved in caring for the deceased at home suggests that it may also assist them with ‘closure’ (Copeland, 2017; Doughty, 2015; Jones, 2019). This has not yet been fully evidenced.

But change may be on the horizon, with a burgeoning UK natural death movement and the Natural Death Centre (NDC) championing promoting the care of the dead by family, and at home, in their multi-edition handbook. Beyond the NDC, the Home Funeral Network (n.d.) offers online guidance and support for ‘home funerals’ and maintains that retaining the body at home gives the family time to ‘accept’ and ‘absorb’ the death. As above though, this is an unsubstantiated claim, with no empirical data to evidence it. Of the primary research that does exist, most come from the United States, where the home funeral movement has been steadily growing (Olson, 2017). In one study, Pitsch (2019) found anecdotal evidence suggesting home funerals help families to ‘heal’, in that they provide more space and time than traditional off-site funeral director-led funerals. In another study, again based in the US, Maxera (2019) found that those who had organised a home funeral generally viewed their experience positively and felt that it helped with ‘closure’. Elsewhere, Lyons (2019) has commented on the strong home funeral movement in the US but reflected that in the UK, ‘reclaiming home funerals has been slow’ (p. 45).

In seeking to explore why this is the case, this paper presents the findings from a small exploratory study on home deathcare in England, drawing on data collected in 2020–21 as part of an ESRC funded doctoral studentship. The paper begins by setting out the background to care of the dead in funerary ritual in England before moving onto an account of how this study was conducted in two phases, as a discourse analysis of freely available general guidance online (phase 1), and interviews with deathcare professionals (phase 2). After detailing the methodology, the paper’s findings show that there is limited general guidance online (that is, not specific to religious belief) and that funeral professionals feel that there is a lack of awareness and understanding around home deathcare options, which has implications for families to be able to make well-informed choices. Including poor information provision, the paper identifies five barriers to home deathcare in England and recommendations as to how each may be addressed.

A brief note on the field and terminology

It is important to note that this is an exploratory paper from a small-scale study that focuses primarily on general guidance online and secular or Christian deaths in England. We recognise and acknowledge that the findings of the paper would be considerably different with participants from religious backgrounds where it is more common to care for the dead at home, or by the family, such in Sikhism and Hinduism. However, people of Sikh and Hindu faiths account for 2.6% of the population in England and Wales compared to no-religion and Christian faith accounting for 83.4% of the English and Welsh population (Office for National Statistics, 2022). Given this, the data generated reflect what information and services are available for the majority of the population and reflect previous research on the care of the body by funeral directors (Rugg & Jones, 2021). It is anticipated that further and more in-depth research could explore the intersection of belief, ethnicity and home deathcare.

The paper also focuses on what could be regarded as ‘unexceptional deaths and bodies’; that is, deaths that are not ‘difficult’ (Robins & Smith, 2020), warrant intervention from a coroner, nor are marginalised or traumatic deaths – such as people who have died in accidents or deceased people who did not have a fixed abode.

There are multiple phrases used to reflect greater family involvement in caring for the body, or the body being at home after death. For the purposes of this paper, the key terms can be broken down as follows:

• DIY funerals: organisation of the funeral by family (also known as family-led funerals) (Natural Death Centre, n.d.).

• Home funerals: defined as ‘family directed after-death care’ (NHFA, 2019) but often have the connotation of some kind of ceremony or ritual occurring in the home.

The definitions of DIY and home funerals may not include having a deceased person in the home and/or the physical care of their body. Due to the lack of clarity on the presence of the body in the definition for DIY and home funerals, in this paper ‘home deathcare’ is used to refer to retaining and caring for the body at home. Such care is defined as ‘The care of a deceased person’s body in the home of the family or that person’s place of residence as provided by the family/friends/community of that person’ (Lyons, 2019, p. 8). ‘Family’ is used throughout as a shorthand for family and friends, and ‘the body’ is used to refer to the deceased person and corpse interchangeably. The significance and difference between these terms used to describe the dead person is reflected in the findings and discussion.

Background

Since the nineteenth century, improvements in public health, sanitation and medicine mean that around the world death rates have dramatically decreased with a resultant increase in life expectancy (McKeown, 1976; Porter, 1997). A reduction in deaths from accidents and infectious disease has seen a shift towards deaths from co-morbidities in old age, with – in England – the majority of people dying 75 years and over from non-communicable diseases such as cancer, heart disease or stroke, and degenerative diseases including dementia (Teggi, 2018). In the twenty-first century, death has thus come to be viewed predominantly as the domain of old age (Jalland, 2010).

At the same time, the place of death has shifted from the home to institution, with around half of all deaths occurring in hospital, 20% in care homes and 6% in hospices (Public Health England, 2018). For the oldest old (85+ years), over 80% die in either a hospital or a care or nursing home (Teggi, 2020). This re-location of the place of death has been accompanied by a shift in authority over the dying and the dead, from families to professionals in hospitals and institutions where death can ‘ … be sanitized, sequestered and removed from public gaze’ (Clark, 1998, online), and professionalised (Clark, 2002; Walter, 1994). Post-death, with the development of the modern funeral sector throughout the twentieth century (succinctly summarised by Parsons, 2018), across the UK funeral profession have become the default carers of the dead (Jupp & Walter, 1999), ‘directing’ all elements post-death activity including storage of the body until its disposal.

These developments have radically changed the average person’s exposure to and engagement with dead bodies. As little as 150 years ago most people in England died at home and bodies were retained there for the short time between death and burial (Frisby, 2015). Public mortuaries were rare and typically only utilised for bodies awaiting coronial investigation. By the latter decades of the nineteenth century and in rapidly growing urban cities, cramped housing and poor ventilation meant that caring for the deceased at home was becoming increasingly impractical, however. This, along with the installation of central heating and improved heat retention, meant that caring for the deceased at home was becoming ever more unfeasible. As a result, more mortuaries were built and undertakers, as they were then known (Parsons, 2018), began to provide cool(er) storage for bodies to prevent their deterioration prior to their burial. As demand for their services increased, undertakers re-purposed or built spaces distinct from their mortuaries, typically called chapels of rest (deliberately invoking sentiments of the sacred) where the body could ‘lay peacefully’ until the funeral and could be visited and viewed. As the by-now routine custodians of the dead, undertakers took over the task of preparing bodies for viewing and burial, including packing orifices, washing hair, and cleaning skin. Aided by the development of embalming techniques and refrigeration (Jupp & Walter, 1999), rising demand for cremation, and a more disperse population that required longer to come together for a funeral, the length of time between death and disposal gradually grew, meaning more storage and viewing facilities were required. The creation of chapels of rest within funeral directors’ premises accelerated, jumping from around 50% in 1955 to 95% in 1969 for people in built-up areas (Parsons, 2018).

Since then, unless they are witness to the death or the immediate aftermath, most people’s exposure to death in England is in the form of viewing the deceased’s body at the funeral directors premises (Harper, 2010a; Lynn et al., 1999). In her ethnographic comparative research of English and US viewing practises, Harper (2010b) outlines the viewing process in rich detail showing how, in contrast to publicly advertised viewings and/or open casket funerals in the US, in England the visibility of the body is typically restricted. Funeral director premises today usually have several small chapels of rest past a (manned) reception area so as not to be easily accessible; visitors attend solo or in small groups during businesses hours, likely having phoned first. To visit out of hours, prior arrangement must be made. On arrival, the visitor enters the reception and waits for the chapel to be checked and made ready for the viewing (for example, making sure the body is neatly positioned and clothing is straight), before being led through into the room. Visits are brief, around 5–15 min, and are not normally monitored by staff. It has been previously argued that this act of viewing the body can be helpful for people coming to terms with the reality of death (Parkes, 1972 and Worden, 1991, cited in Howarth, 2001), facilitating detachment from the deceased person-as-was (Mathijssen, 2021; Testoni et al., 2020):

Despite a cultural perception of the corpse as polluting, bereaved people continue to be emotionally attached to the body of their loved one. It is for this reason that death educators and counsellors recommend viewing of the dead body. This is thought to have a cathartic effect on the bereaved. (Howarth, 2001, p. 121)

There is little underpinning empirical evidence for these suppositions, however, and there are early indications that the significance of the body in funerary ritual is declining (see Woodthorpe et al., 2022). Moreover, there is scope to explore further how contemporary ritualised activities either reflect or (re)construct personhood (Davies, 2002 in Harper, 2010a) or classify the body as an object rather than a person (see Stroud, 2018).

This will not be news to readers of this journal. The analysis of contemporary post-death ritual has been a consistent topic of interest to Mortality readers and death studies scholars more broadly. Thirty years ago Walter (1994) made a case for what he called a late-modern ‘revival’ of death, whereby the individuality of the deceased was reclaimed by families from the professionals who had come to dominate post-death events. Nearly 20 years later, in this journal, Caswell (2011) argued that post-death ritual was increasingly personalised to accommodate twentieth-century individualism, and Holloway et al. (2013) articulately showed that the key to a funerary ritual was its consistency with belief systems. More recently, Walter (2017) made a strong case for addressing the level of control that funeral directors hold over death ritual as the typical first point-of-contact after a death has occurred, and elsewhere Woodthorpe et al. (2022) have shown that, for some, there is an emergent rejection of the authority of the funeral director and desire to deal with and ritualise the deceased person and their body in their own time ‘behind closed doors’.

While contemporary funerary rituals have continued to come under scrutiny, home deathcare and a home funeral movement have been growing. This is particularly so in the US (Olson, 2017), where those who wish to care for the dying or body at home have been offered assistance and education by groups mostly made up of non-professional women (Hagerty, 2014). Often calling themselves death doulas, death midwives, or home funeral guides (Olson, 2016), similar groups offering comparable services are developing in England (Hahn & Ogle, 2022). Despite these developments, very little is known empirically about home deathcare, with most literature coming from passionate advocates based on their first-hand experience (for example, Herring, 2019). Of the research that does exist, it is predominantly US based and home deathcare has not necessarily been the specific focus of the study. For example, in their research into the history of US home funerals, Pitsch (2019) found anecdotal evidence that suggested that home funerals help families to ‘heal’, in that they provided more space and time for the family than traditional funerals off-site organised by funeral directors. Elsewhere, Maxera (2019) found that the experience of home funerals in the US was generally viewed positively by those that had done so and that it helped with ‘closure’. In an Australian report, Lyons (2019) noted that there was a strong home funeral network in the US but that in the UK home funerals have been slow to take off. In seeking to fill this empirical gap, the study from which the rest of this paper originates sought to explore why home funerals have been slow to take off, the provision of information about ‘doing it yourself’, and perceived barriers to caring for the body at home.

Methods

A small exploratory study underpinning this paper was conducted in two phases. Phase 1 was a discourse analysis exploring freely available UK-based general guidance online on ‘what to do after a death’. Phase 2 consisted of interviews with five professionals who work in deathcare. The respective studies are detailed below.

Phase 1: discourse analysis

Selection of sources

As a popular source of health and legal advice (Strzelecki, 2020), websites were selected as an exemplar of the information available to the public on what to do after a death. In a technique outlined by Stocking and Matsa (2017), potential search terms were devised, tested to ensure they had relevant results, and then entered into Google Trends to determine the relative frequency in which they were searched in the last 12 months. The most frequently searched term was ‘What to do when someone dies’, being four times as common as the next most popular term. This term was thus selected to source the websites.

Research into online searching behaviours indicates that people rarely go beyond the first page of search results (Buhi Mph et al., 2009; Dean, 2020); therefore, the first page of results formed the data set for analysis. Initially, 10 webpages were identified, but the tenth search result was excluded because it was not relevant to the UK context. Two websites from Dignity Funerals (one of the largest funeral providers in the UK) had overlapping guidance pages so were combined. Information was gathered on the website authors from their ‘About Us’ webpages to categorise them into source type: government, not-for-profit or business (see Table 1). Pages of the websites relevant to the question, either on the main page or a secondary page one link away from the main page, were clipped using Microsoft Office OneNote.

Table 1. Websites by source type in order of result in Google search after screening.

Result Order	Author Name	Source Type
1	GOV.UK	Government
2	Money Helper	Government
3	Age UK	Not-for-profit
4	Which?	Not-for-profit
5	Citizens Advice	Not-for-profit (some government funds)
6	Dignity Funerals	Business
7	Bereavement Advice Centre	Business (funded by Co-op legal services)
8	Farewill	Business

Analysis and questions

Discourse analysis allows investigation of social patterns via examining details in text and language (Tonkiss, 2018). The aim of discourse analysis is not to give the ‘true’ reading of a text, as it is impossible to be certain about the intentions or purposes, but to take meanings in the text and question them (Gee, 2014). The discourse analysis for phase 1 was carried out as outlined by Tonkiss (2018), using supplementary techniques to interrogate the text sourced from Gee’s (2014) toolkit in addition to the following topic-specific research questions.

1. What steps or actions to take after a death is outlined?

2. Are DIY funerals or care of the body at home discussed? If so, how are they framed?¹

Phase 2: interviews with deathcare professionals

Phase 2 of this exploratory study consisted of interviews with deathcare professionals discussing the feasibility of, and barriers to, home deathcare. Purposive sampling was used to access professionals with an interest or awareness of the topic based on their advocacy activity and public profile online. Participants were provisionally approached to take part via email, given an information sheet and the opportunity to ask questions before completing a consent form. Participants were given the choice in this consent form as to whether to be anonymised or not, so as to retain ownership over their contribution to the project (Tilley & Woodthorpe, 2011). All five participants gave consent for their name and profession to be identified (see Table 2).

Table 2. Participant names and professions.

Participant Name	Profession
Anne Barber	Celebrant
Rosie Inman-Cook	Manager of the Natural Death Centre (NDC) a charity providing independent funeral advice
Susan Morris	Trustee and Company Secretary of the NDC
Stephen Nimmo	Independent Funeral Director
Claire Turnham MBE	Founder of Home Funeral Networks and Only with Love, a non-profit helping families hold home funerals.

Data collection and analysis

Hour-long semi-structured interviews were conducted and recorded online using Microsoft Teams, which is encrypted thereby safeguarding confidentiality (Saarijärvi & Bratt, 2021). The interview recordings were deleted after the interviews had been transcribed verbatim. Participants were given the opportunity to review their interview transcript, but no participants made changes. Inductive thematic analysis was used to analyse the transcripts as outlined by Braun and Clarke (2013) using NVivo, a computer-assisted qualitative data analysis software (CAQDAS) package that can enable researchers to effectively categorise and organise raw transcript data.

The study was given a favourable opinion by the University of Bath Social Science Research Ethics Committee [reference: S21-011]. For ease of reading, what follows in the findings is organised according to the two phases of the study. For phase 1, the webpages were from early 2021.

Findings: an overview

Phase 1: ‘What to do when someone dies’ webpages

All landing pages had five topics in common: Registering the death, funerals, informing people and services, finances, and bereavement services. Registering the death was given the highest priority across all the pages, presented as either the first or second topic, with the greatest clarity and consistency of information. Overall, a greater focus was given to the bureaucratic aspects of death than the experience of loss and associated grief. Signposting to bereavement services was often included towards the end of the webpage and as an external link to a different website or organisation.

In terms of DIY and home funerals, six of eight pages mentioned organising the funeral yourself, although only Age UK explicitly used the phrase ‘DIY funeral’. Information on families conducting part or all of the funeral arrangements was often limited, and priority was given to advice about sourcing and instructing a funeral director. The two webpages that did not mention doing a funeral yourself were authored by Dignity Funerals and Farewill.

For DIY or home funerals, saving money was the only potential benefit mentioned, other than Age UK where the environmentally friendly aspects and a more personal nature were flagged. However, Age UK mitigated this benefit of personalisation by warning that more ‘advanced planning’ was needed on the part of families, implying that to do so was potentially more difficult or complex than using a funeral director’s services. Likewise, Bereavement Advice Centre (BAC) recommended calling a funeral director before deciding to organise a funeral yourself ‘as there are a number of practical issues’, although they did not specify what these issues were. Overall, funeral directors were often framed positively as taking the strain and stress out of funeral organisation, thereby making the process easier for the family.

When it came to retaining and caring for the body at home, a couple of webpages said it is possible to keep or take the body home but no guidance on how to do this was given. Where family involvement in bodily care was mentioned, it was still assumed that this was with the support and oversight of funeral directors. For example, the BAC gave an example of a split arrangement with a funeral director so that the family could select which aspects of deathcare they wanted to do themselves. Elsewhere, Dignity Funerals recommended that the body be brought into their care first for the ‘required preparations and arrangements’ with no further information on what this consisted of.

Phase 2: interviews with deathcare professionals

The lack of freely accessible guidance and information on retaining and/or caring for the dead at home was confirmed in participant interviews. A lack of information was compounded, all participants felt, by a multiplicity of terms and services that did not match across providers or even advocates or lobby groups. For example, participants noted that there were differences in timing and length of caring for the body at home – and a lack of understanding about what this constituted within families they had supported. Having the body at home could mean, for instance, overnight; for a few hours so that distant family had time to travel to see the deceased person before their removal to a funeral director’s premises; the night prior to the funeral; or from death until the funeral. The level of family involvement in elements of bodily care during this time, such as washing and laying out the body, could also vary significantly, from nothing to everything.

All participants felt that there was a general lack of awareness about these options even being available, with Steve saying ‘The biggest barrier [to caring for the dead at home] I suppose is ignorance. It’s that sense of it can’t be done’. Such obliviousness, participants noted, stood in stark contrast to the rhetoric of choice in end-of-life care policy (see Borgstrom & Walter, 2015) and the growing emphasis on personalisation in funeral literature and marketing (Ramshaw, 2010). Participants felt that choice was not possible when families were not usually fully informed of all their choices and that this was a significant barrier to keeping, or taking on responsibilities for caring for, the body at home. As Claire remarked, ‘what’s really important [to enable choice] is that everybody knows what’s possible and then they make informed decisions based on what feels right for them’.

Participants noted that what they felt were low levels of awareness contributed to a lack of confidence in many families. Participants viewed home deathcare as an uncommon practice, with Steve and Susan feeling that only a small fraction of families were choosing, or in a position to choose, to care for the body themselves. Steve regarded the UK as ‘not that [sort of] culture that embraces this idea of looking after our own dead’, while Anne felt that such was the unusualness of keeping the body at home that it was widely stigmatised and a source of gossip, ‘with that “oh you’ll never guess what, they’ve still got the body”’.

What is more, participants felt that colleagues in the funeral sector were themselves hindering home deathcare. They saw the quick removal of the body from the site of death by the funeral director, ‘snatched away’ as Susan put it, as a way of ensuring control over the funeral arrangements and putting their organisational needs before the family’s (see Walter, 2017). As a working funeral director, Steve saw his peers as being placed in a significant position of trust, remarking ‘if I (a funeral director) said “oh no it’s completely illegal to have somebody at home” … most people go “oh okay”. That’s the position of trust that we hold’. At the same time, participants recognised that this high degree of trust could also help families who were feeling unsure, as funeral directors were in a position to educate and empower by giving them reassurance, and confidence to ‘go against the norm’. Importantly though, families needed to be informed of their options from the outset – before the body was moved into the funeral director premises.

A potential barrier to home deathcare was, participants argued, an ambiguity in the policy and laws around keeping the body at home. Participants were aware of a requirement in England and Wales for the body to be disposed ‘in a timely manner’, but they were not sure which law, policy or time frame applied. This prompted Claire into thinking that the law needed to be looked at to ‘make sure that we aren’t making assumptions with what the actual rules and regulations are’. There are two laws that are relevant in England and Wales here. First, the criminal law of ‘Preventing a lawful and decent burial’, which was used in 1974 for the first time since the late nineteenth century and has since been used in a variety of circumstances related to the concealment of bodies, whether the accused was culpable in the death or not (Jones & Quigley, 2016). What constitutes ‘prevention’ is ambiguous, however, in that it becomes left to the individual court to determine in each case what accounts for a ‘decent’ and timely disposal; a concept that has changed much since the use of the law in the nineteenth century when much of the burial process was controlled by the church and governed by canon law. Second, the Public Health (Control of Disease) Act (1984) gives the justice of the peace the right to remove a body from the home if keeping the body would ‘endanger the health of any person’. As with the ambiguity about what constitutes ‘prevention’ in the previous law, what constitutes ‘endangerment’ is not specified. Such vagueness, combined with a lack of oversight and regulation in the English funeral industry (Competition and Markets Authority, 2020), allows enormous variation in practice and autonomy in how ‘timeliness’ after a death is interpreted and advised upon. Such discretion (see Rugg & Jones, 2021) was a real concern, participants felt, particularly when it came to providing clear guidance to families on what they were legally entitled or able to do.

When it came to the condition of the deceased, Susan had experience of bodies in the mortuary decaying and this experience underscored her desire to make sure that people were aware of decomposition when they decided to keep a body at home, as ‘if someone does putrefy early, that would be left with the families for ever and ever. It’s horrible’. Other participants were not so vocal about the risk of decomposition beyond it limiting the time the body could be kept at home. Indeed, observing the early signs of decomposition was regarded by some as of potential benefit to families as they signalled the reality of the death. As Claire remarked, ‘you obviously have that time … if you start to see [bodily] changes, you know, this is the natural process’. In her experience, Claire found that families who had not spent time with the body after death or performed home death care were ‘still in shock’ on the day of the funeral and they were ‘almost broken’ by the funeral experience, while those who had spent sustained time with the deceased person and seen their body change appeared to be better emotionally equipped on the day of the funeral.

Finally, all participants felt that – from their perspective – caring for the body at home could be seen by families as inconvenient, complicated, difficult, or too much responsibility to take on. They also recognised that the manner of the death, the home environment, and the relationships within a family could all contribute to the feasibility of retaining and caring for the dead at home, and that these needed to factor in any future guidance.

Discussion

This paper posits there are five reasons why home deathcare uptake in England is low and slow (Lyons, 2019), namely (1) the absence of information and guidance online, (2) a lack of consensus about terminology and uncertainty about what is (il)legal, (3) the authority of and variation in the practice of funeral directors, (4) concerns about decomposition, and (5) the effort required by the family. Each is dealt with in turn here, with recommendations as to how it might be addressed.

Information provision

As phase 1 of this study has shown, there is very limited readily available general information about caring for deceased people at home in the eight most commonly found webpages. Of what does exist, the assumption is that there will be funeral director involvement from the outset, and there is no acknowledgement of the potential or risks of keeping the body at home, as identified by the professional interviews. Given the dearth of information in the most prominent webpages, national end-of-life policy needs to expand to reflect and include what happens after a death. In addition to this, the exalting of dying at home in policy (Driessen et al., 2021) could be extended to include keeping and/or caring for the body at home, as a way of observing the changes to the deceased person’s body, and potentially facilitating a better grief experience. In order to do this, however, there is clearly a need for empirical evidence to show the impact of doing so on bereavement, and to determine the benefits (and risks) to be derived from keeping the body at home and witnessing its deterioration, over varying types of deaths, time frames and in different home contexts. Classifying these, alongside the grief experience of family members, may go some way to providing reliable evidence that future families can draw on to make a (more) informed choice about whether to retain the deceased’s body and/or provide bodily care. It may also be of use to advocacy groups (see recommendation 3).

Terminology and legality

As data from participants confirmed, the variability in terminology about caring for the dead at home can contribute to low levels of awareness of all available choices. With the funeral director so well established as a gatekeeper (Walter, 2017) and who in turn uses varying terms to describe their services (Woodthorpe et al., 2022), with no consensus on language and terminology, it is little wonder that home deathcare and caring for the dead at home can ‘slip through the cracks’ in general guidance. Moreover, as participants suggested, it is not in funeral directors’ interests to provide options that may relinquish organisational control or cut into their profit margins (see below). Thus, by attaching home deathcare to grief experience in end-of-life policy, there is the potential to clarify key terms and phrases, and the legality of retaining and caring for the deceased person at home over a sustained period of time. Key terms, as shown in this paper, include how the dead are referred to: as a person or a body (Stroud, 2018; see recommendation 4). Such clarity could help with families have a clear(er) understanding about the options open to them, in order to make an informed choice.

Authority of and variation in funeral directors

The gatekeeping role of funeral directors is, as this study has shown, both a problem and a solution. On the one hand, as commercial entities funeral directors are not best placed to be responsible for providing neutral educative guidance on home deathcare as it may mean lost income. Suspicion over the funeral directors’ advice is not unique to home deathcare either; concerns about transparency and information provision by funeral directors have already led to a full sector investigation of the UK funeral sector by the government-sponsored Competition and Markets Authority (2020). On the other hand, though, there is a huge benefit to be derived from being in such a trusted position, and such high levels of public confidence mean that funeral directors are in an influential position to educate, empower and enable families to make informed choices. Moreover, there are practical services they can provide to actively facilitate and enable home deathcare, such as cooling equipment. As noted already, this practice is commonplace for particular types of death, for example, for the deaths of babies and children, and outside of the UK is a routine part of funeral directors’ services in the Netherlands, for example. There are practical reasons for the adoption of this practice, however, including the size and portability of babies and children and the smaller space required for the cooling equipment, and in the Netherlands where the time lapse between death and disposal is stipulated in law is no longer than 5 days, compared to the English average (and unlegislated) period of 3–4 weeks. It is also not known how feasible it is to keep the body at home in UK homes, which on average are 94 m² (Ministry of Housing, Communties and Local Government, 2020).

What we do know, however, is that the authority of funeral directors is likely to change as the funeral ‘consumer’ of tomorrow (the baby boomer) comes to the purchase with different values, consumption habits and demands (Leach et al., 2013). There are also alternative discourses emerging, such as the natural death and death doula movements, as well as the death-positive movement (see Koksvik, 2020). Combined, these changing demographics and discourses will open up the funeral sector to more scrutiny and challenge, for a consumer who explores more fully their options before committing and will likely expect a wider array of consumer choices (see recommendation 1).

Decomposition

Fear about the degradation of bodies is not unusual or unique to death, and as this paper has indicated the way in which the dead person is identified (as the deceased, a corpse, or ‘the body’) shapes how their remains are conceptualised. In this paper, ‘the body’ has been used to identify the dead person, but this has in turn somewhat objectified the person-that-was and what happens to the corpse post-death – and is for another paper. Much has been written about the status of the deceased person and the threatening nature of leaky and (un)controllable bodies (such as Douglas’ classic Purity and Danger, 1966), and whether the dead person’s body is subject (a person), abject (in between a person and a thing), or object (a thing) (Quigley, 1996). As this paper indicates, there is potential benefit to better recognising the potential of the liminal intermediary period – of being neither one nor the other – as the recently deceased (the abject body), shifting from a person-that-was (the subject) to a corpse (an object). Bearing witness to this change can, as suggested by participants, be helpful in acknowledging the ‘reality of death’ (Herring, 2019). Questions remain as to how equitable and achievable this is for everyone, however, given the diverse manner of ways in which people die and the feasibility of contemporary housing to accommodate this liminal period. Moreover, as Susan noted in her interview, families need to be prepared for what this entails and what it might look like over time. Certainly, a shorter time lapse between the death and the body’s disposal, akin to the Netherlands, would mean that home-cooling could become a viable proposition for more families.

The effort required by the family

To keep a body at home requires a commitment from the family, and an ability to be adaptive according to the circumstances of the death and their capacity. Home deathcare will suit particular types of deaths and/or families, and households and home types. A key problem with this, however, is that, given there is such little empirical evidence in this area, much of what is written about home deathcare is speculative and anecdotal. There is clearly therefore a need for robust primary research to explore the commitment required, the risks and benefits of doing so, lessons learned and best practice. Such research will, we posit, require a commitment to intersectionality to understand the ways in which the intermingling of relationship and status, gender, age, culture, ethnicity, religious belief, education, and location will compound and shape the experience. Without this, families and even practitioners will continue to rely on partial, incomplete and potentially unbalanced sources of guidance and advice. In creating this evidence base, future research would also be adding to the provision of information to enhance the ‘death literacy’ of the population (see Leonard et al., 2022). Given the potential threats that home deathcare poses to the funeral sector in terms of lost income, such research would need to be conducted sensitively to ensure that results would, and could, be utilised by those working in deathcare.

Conclusion

This paper has detailed the first small study of its kind to empirically explore the issue of home deathcare in the UK, drawing on a two phased study using discourse analysis and interviews with professionals. The findings from this exploratory study show that from the professional perspective there is a general low level of awareness of home deathcare and the possibility of caring for the body at home. This is exacerbated by limited information online, there being no consensus as to what constitutes home deathcare and what can (and cannot) be possible, and a high degree of trust in funeral directors as the first port of call immediately after a death (Walter, 2017). There is also very limited empirical evidence to indicate the feasibility of retaining and/or caring for the deceased at home, nor the risks and benefits of home deathcare for bereaved families.

The paper has made five recommendations to enable families to make a (more) informed choice about taking on home deathcare themselves. Extending the end-of-life policy to what happens after death and attaching this to grief experience may go some way to raise awareness about home deathcare as an option. Clarifying key terms and the legality of keeping a body at home for a period of time will help families understand the options open to them, and greater understanding of the liminal phase of the dead person during the period post-death and pre-disposal could be of help to future generations in determining what to do after someone has died. Funeral directors are key to this, and in future research they need to be engaged as critical stakeholders that can empower and enable, in the provision of information, guidance and cooling services.

Acknowledgments

Thank you to the anonymous reviewers for their constructive feedback.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author, SH, upon reasonable request.

Additional information

Funding

This work was supported by the ESRC SouthWest Doctoral Training Partnership. Grant reference ES/P000630/1.

Notes on contributors

Samantha Hooker

Samantha Hooker is an ESRC-funded PhD student at the University of Bath, exploring home deathcare.

Kate Woodthorpe

Kate Woodthorpe is a Reader in Sociology at the University of Bath where she is co-director of the Centre for Death and Society (CDAS). She has conducted funded research and published widely on funeral practice, families at the end of life, and the deathcare sector.

Notes

1. It is important to recognise that this study took place during the pandemic, and COVID impacted the way that the body was treated after death across the UK. However, the information on the pages, clipped prior to the lifting of lockdown restrictions, did not appear to be influenced by the pandemic. Where COVID was acknowledged, it was with links to separate COVID specific information.