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Keywords:

  • hospice;
  • palliative care;
  • end-of-life care;
  • ethnicity;
  • Chinese;
  • home care

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

This paper presents findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, which sought their views about end-of-life care. We focus particularly on experiences and expectations in relation to the provision of end-of-life care at home and in hospices. White elders perceived hospices in idealised terms which resonate with a ‘revivalist’ discourse of the ‘good death’. In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of ‘inauspicious’ care in which opportunities for achieving an appropriate or good death were limited. They instead expressed preference for the medicalised environment of the hospital. Among both groups these different preferences for instututional death seemed to be related to shared concerns about the demands on the family that may flow from having to manage pain, suffering and the dying body within the domestic space. These concerns, which appeared to be based on largely practical considerations among the white elders, were expressed by Chinese elders as beliefs about ‘contamination’ of the domestic home (and, by implication, of the family) by the dying and dead body.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

In the developed world death is an event concentrated in older age: cancer has its highest incidence among older people, particularly those aged over 85, and the incidence of respiratory, circulatory and nervous disease is weighted towards older people (Franks et al. 2000). In the UK, contemporary policy is directed at trying to increase the proportions of death that occur at home both because this is seen as an ‘ideal’ environment in which to die and because cost savings are anticipated once a shift occurs from secondary to community care (Department of Health 2006). This policy may be criticised for being based on untested ethnocentric assumptions about the preferences of dying people and their informal caregivers for place of care and also for being somewhat blind to the problems (and household costs) with which older people and their informal carers may be confronted in accessing help and support during a final illness. It is well known that all older people access health and social support services either at home or in hospices less than might be anticipated. Access by older adults from black and minority ethnic groups is particularly low (NCHSPCS 1995, 2001, Ahmed et al. 2004). The factors that lie behind this are not fully understood and little is known about the perspectives of older adults in the diverse ethnic groups that constitute the oft cited category of ‘black and minority ethnic’ (Department of Health 1999). A review of the literature on the palliative care needs of black and ethnic minority groups has highlighted the paucity of research on the views and needs of Chinese people in this area (NCHSPCS 2001).

The aim of this paper is to present a comparison of findings from two linked studies of white (n = 77) and Chinese (n = 92) older adults living in the UK, in which we sought their views about end-of-life care. We focus particularly on experiences and expectations in relation to the provision of end-of-life care at home and in hospices. The findings show that white elders perceived hospices in idealised terms which resonate with a ‘revivalist’ discourse of the ‘good death’ (Walter 1994, Seale 1998, Long 2004). In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of ‘inauspicious’ care in which opportunities for achieving an appropriate or good death were limited. They instead expressed preferences for the medicalised environment of the hospital. Among both groups these different preferences for instututional death seemed to be related to shared concerns about the demands on the family that may flow from having to manage pain, suffering and the dying body within the domestic space. These concerns, which appeared to be based on largely practical considerations among the white elders, were expressed by Chinese elders as beliefs about ‘contamination’ of the domestic home (and, by implication, of the family) by the dying and dead body.

The studies

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

The paper is based on an understanding of ‘ethnicity’ as denoting shared cultural ideas, values and traditions in relation to fundamental aspects of life experience (see for example, Barot 1996). Ethnicity involves dynamic self-identification with a range of identities, and to this extent it is a resource for living, rather than a prescriptive code (Ahmad 1996, Karlsen and Nazroo 2002: 3), with choices related to ethnic identity bounded by social structural factors (Karlsen and Nazroo 2002). In the context of choices about end-of-life care, these mean that the range of options available is influenced not only by perceptions of ‘cultural appropriateness’ but also by a complexity of other factors such as access to formal and informal health and social care resources, and availability and utility of information and knowledge.

Comparing Chinese and white older adults living in the UK

People of Chinese origin made up about 0.4 per cent of the population in the UK (ONS 2003), following an influx from Hong Kong during the 1990s. Patterns of settlement in distinct but dispersed areas and of employment (largely in the family catering trade) have been reported as contributing to the social and political exclusion of Chinese people in the UK (Chau and Yu 2001), although a comparison of white and ethnic minority groups has shown that Chinese and white older people have broadly similar health and income status, similar family structures – with both unlikely (in comparison with all other ethnic groups) to have an adult child still living at home – and similar employment status among the people aged under 55 years (Nazroo et al. 2004). Chinese people living in the UK are less likely to use community medical services such as GPs, probably for language-related reasons (Sprotson et al. 1999). Our study of Chinese and white elders was concentrated in two major UK cities: Sheffield and Manchester, where respondents lived in similar environments typical of such major urban conurbations.

Places of care at the end of life

Specialist palliative care services in the UK are now designed to predominately support home care at the end of life, working to the principle that admissions to specialist units such as hospices should only be for those patients with ‘distressing symptoms and other complex needs which are not readily relieved in the home and other care settings’ (NICE 2004). The direction of policy seems to be supported by evidence from cross sectional surveys which suggest that most people will express a preference for a home death if asked on any one occasion (Higginson 2003). However, the numbers who actually achieve this wish are small, with the majority of people having a final admission to hospital in the days immediately preceding death (Addington-Hall and McCarthy 1995).

A range of constraints has been identified in epidemiological research that prevents people from dying at home: haematological malignancy, disease of rapid progression, older age, low socioeconomic status and lack of access to palliative care services, are the most commonly identified (see for example: Grande et al. 1998), with the degree to which palliative care needs can be met successfully in the home environment shown to depend most closely upon the close involvement and availability of an informal carer for the dying person: whether a family member or a close friend (Gomes and Higginson 2006). The extent to which different cultural beliefs about death and dying, the role of the family, or of the relative perceived values of places of care, might influence these patterns has been little explored, with some notable exceptions. Data from a cross-sectional survey of 256 white people aged 55–75 show that hospice is generally preferred as a place of death in comparison with home (Catt et al. 2005), while a survey from the Netherlands of bereaved carers’ recollections of the last three months of life for older dying people suggests that perceived carer burden is strongly associated with whether death takes place at home (Visser et al. 2004). Factors which might shape expressed preferences for hospice care and shape the experience of ‘burden’ during dying are indicated by qualitative data from a longitudinal study among 41 older white people with terminal cancer and 14 of their family caregivers. Thomas (2004) reports that a stronger preference for hospice care was expressed by respondents than the researchers anticipated, and that this preference was shaped dynamically by experiential and existential factors during the illness trajectory relating to perceived service quality, informal care-giving relationships and expectations and struggles in caring for the body. The factors reported by Thomas et al. (2004) resonate with a growing body of research which shows how white older adults engage in a struggle to balance a desire for independence with a need for care and support during any final illness (Kelner 1995, Howarth 1998, Wilson 2000, Vig and Pearlman 2003, Hallberg 2004, Lloyd 2004, Calnan et al. 2006).

There have been no UK-based studies of older Chinese people on these issues, but a number of studies outside the UK are of relevance. Among older Chinese people in Singapore, Yaw et al. (2005) report observations from clinical practice which suggest that patients are increasingly opting for institutional death, suggesting a range of practical and environmental reasons for this shift. In a survey of Chinese caregivers of dying people in Hong Kong, younger caregiver age was found to be related to greater difficulty with the tasks required to give care to the dying person and in managing interpersonal family relationships (Chan and Chang 1999). Evidence from other developed countries where Chinese people have settled during the 20th century (Crain 1996, Fielding and Hung 1996, Waddell and McNamara 1997, Bowman and Singer 2001) suggests that the traditional beliefs and practices of Chinese people, which are shaped by many influences such as Confucianism, Buddhism and Taoism, are undergoing adaptation as acculturation to life in Western societies occurs. This makes the task of trying to understand experiences of illness and expressed preferences for end-of-life care extraordinarily complex.

Our study of ‘white’ elders took place in Sheffield between 2001 and 2003. Opportunities were then sought to conduct similar studies among other cultural groups, with funding gained to examine the views of older Chinese people living in Sheffield and Manchester. This took place between 2003 and 2005. Due to different funding streams, the studies had different emphases: the study of white elders was focused on beliefs about end-of-life care technologies; while the study of Chinese elders examined views and knowledge about cancer and cancer screening, as well as end-of-life care. Some aspects of Study One have been previously published, and we draw on aspects of previous publications in summary throughout, as well as previously unpublished data from Study One (Gott et al. 2004, Seymour et al. 2002).

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

Here, attention is drawn to the main methodological features of the studies. Further detail about the methods employed in the study (including the third-party vignettes employed) of white elders is available at (http://www.esrcsocietytoday.ac.uk) and from the final report of the study of Chinese elders (available from the authors on request). In both cases, Research Ethics Committee approval was gained prior to the commencement of fieldwork.

Study design

Both studies used the same design of participatory qualitative research and liaised closely with community groups representing older people. In each case, the research was conducted in two phases over 24 months. Phase 1 consisted of focus groups with participants drawn from community groups. Phase 2 involved interviews in which ‘vignettes’ were used to prompt discussion of end-of-life care (available from the authors on request). The first study involved 77 older people from three socio-economically contrasting areas of Sheffield, UK. The very large majority of these reported their ethnicity as ‘white’. The second study involved 92 older adults from the Chinese communities in Sheffield and Manchester, with interviews and focus groups conducted by a multi-lingual researcher of Chinese ethnicity in Cantonese, with Mandarin or Hakka used as necessary. Participants in Study Two reported their ethnicity as ‘British Chinese’ or ‘Mainland Chinese’ or ‘Hong Kong Chinese’.

The focus groups were guided by an aide memoire which covered: the role of life-prolonging treatment, hospice and palliative care, care decision-making, caregiving and place of care. The interviews were based on third party vignettes covering similar themes. While the use of third-party vignettes distances participants’ responses both from their own personal circumstances and from any concrete choice of action, their use can enhance the comparability of data gathered, and allows insights to be developed into the ‘general imagery’ (Finch 1987) that may be associated with the phenomenon under study.

In both studies, the focus groups were conducted over the course of up to two hours, and each interview lasted for approximately one hour. The process of explanation prior to data gathering, and the process of debriefing afterwards, added two or three hours to each interaction.

Sampling

Purposive and snowballing sampling methods were used to generate a range of study participants in Sheffield and in Manchester. In the study of white elders, 32 participants in six focus groups were invited via links with local voluntary groups representing older people in Sheffield. In the second interview phase of the study, three general practices in different localities within Sheffield were asked to draw a sample of patients in the age categories: 65–74 years, 75–84 years and over 85 years. The sample was checked by GPs to ensure the inclusion of people of different marital status and place of residence. Forty-five people took part in interviews in this study. In the study of Chinese elders, interaction with the local Chinese communities in Sheffield and Manchester enabled the recruitment of participants, and enabled the generation of helpful insights into the issues at hand during the whole study process. Forty-six people took part in focus groups (32 from Manchester and 14 from Sheffield); and 46 people took part in interviews (37 in Manchester and nine in Sheffield). In both studies, exclusion criteria were: inability to give informed consent, experience of close bereavement in the last year, or the recent diagnosis of a life-limiting illness. It therefore needs to be noted that the participants were not facing these issues in ‘real time’. Many, however, reported having thought about these issues at length prior to their participation in this study, having personal experience of caring for dying relatives, or living with one or more long-term conditions as well as, for some, the frailty often associated with late old age.

Participants’ characteristics

The age range of participants across the two studies varied, partly because of differences in self-identification of participants as ‘older’, and partly because we decided to recruit people aged from 50 and over in the study of Chinese elders, because of some evidence that the health of Chinese adults deteriorates faster with ageing than the same-aged groups in wider society (Owen 1994). Table 1 gives details of the characteristics of participants in each study.

Table 1. Demographic characteristics of participants
 Study 1Study 2Study 1Study 2
6 Focus groups (n = 32)7 Focus groups (n = 46)Interviews (n = 45)Interviews (n = 46)
  • 1

    There was no lower age limit on participation in the focus groups, rather we included anyone who self-defined as older, meaning that two participants in Study 1 and 13 participants in Study 2 were aged <55 years.

Gender
  Male 9131613
  Female23332933
Age bracket
  <551 2 7 0 6
  55–64 711 210
  65–7415221621
  75–84 5 515 6
  85+ 2 112 3
  Missing 0 0 0 0
Marital status
  Married14282524
  Single 2 4 2 2
  Widowed13 81614
  Divorced/separated 2 6 2 6
  Missing 1 0 0 0
Ethnic origin
 White British26 45 
 White Irish 2  0 
 Black Caribbean 2  0 
 Black British 1  0 
 Missing 0  0 
 British Chinese 22 17
 Hong Kong Chinese 12 10
 Mainland Chinese 12 19
 Taiwan Chinese  0  0
 Malaysian Chinese  0  0
 Singapore Chinese  0  0
 Vietnamese Chinese  0  0
Description of health
 Excellent 4 5 1 2
 Very Good 6 5 4 5
 Good13141319
 Fair 7212420
 Poor 1 1 3 0
 Missing 1 0 0 0
Strong religious beliefs
 Yes21 31 
 No10201426
 Missing 1 0 0 0
 Buddhism 13  9
 Christian  7  7
 Catholic  6  4
Social class based on last reported occupation
 I Professional 1 2 2 8
 II Managerial/Technical11 0 6 
 III Skilled occupations  6 11 
 (N) Non-manual  3 11 
 (M) Manual 4  7 
 IV Partly skilled occupations 437 (Catering) 534 (Catering)
 V Unskilled occupations 3  3 
 Missing  1  
 Housewife  6  4
Living arrangements
 Own home31153819
 Nursing/residential home 1 0 7 0
 Rented flats-Council or  Housing association 31 27

Data analysis

Both focus group data and interview data were audio taped and transcribed verbatim, and analysed as freestanding data sets. Focus group analysis provided an initial coding frame for the analysis of the interview data and informed the development of vignettes for Phase 2 interviews. In both studies, the vignettes were discussed with members of dedicated project advisory groups, who were relevant community-group representatives or key informants. The vignettes comprised unfolding stories which allowed participants to reflect on the situation of a fictional ‘third party’. In both studies, the analysis process involved study of the variety of ways in which participants positioned themselves in relation to the vignettes (for example, some focused exclusively on the situation of the character in the story presented to them, while others preferred to talk about their own experiences) as well as the content and meaning of their responses. The research teams were involved in the interpretive activities that followed sorting and coding of data. In the study of Chinese elders, all the interviews and focus groups were transcribed into Chinese and then translated into English with consistency checked by a Chinese researcher. We did not have the resources for back translation, and readers should be aware that the process of translation can distort concepts and understandings embedded in Chinese languages.

A note about comparability

The different funding streams, the demands of constructing culturally sensitive interview and focus group aide memoires, and the desire to collaborate with community groups to ensure the latter, means that the data from the two studies cannot be regarded as comparative in any simplistic sense. What it was possible and acceptable to ask varied in the two studies. However, this afforded interesting comparison in itself. The approach taken in the study of Chinese elders tended to be more ‘open’ since it became clear that to some extent interviewing and focus group discussions can be experienced as counter cultural (Payne et al. 2005). We were also aware that we had perhaps taken an overly structured approach in the study of white elders because of our anxieties to make the data collection process as ‘safe’ as possible for those taking part (Seymour et al. 2002). The same key concerns, however, underpinned both studies, and data analysis raised some interesting common themes. Reflection on these has helped us to understand more clearly why particular issues were of importance to all the respondents involved. Below, we report on respondents’ expectations and experiences of hospice and palliative care and their concerns about care of the dying at home.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

The meaning of hospice and palliative care

Both studies aimed to explore expectations and experiences of hospice and palliative care, and the meaning these terms had for participants. The term palliative care was not known by any respondents, although the white respondents were familiar with the role of GPs and Macmillan nurses in providing end-of-life care for people with advanced cancer, and almost everyone had heard of hospices. However, most of the white elders expressed underlying concerns about what was perceived as the obvious relationship of hospices with death. This was especially prominent among those respondents living in the more deprived areas of Sheffield. For example, Eddie, a man who had witnessed the painful death of his father from cancer, said the following:

It's a place to stop permanent, it's like St [local hospice] . . . So if you, well, you see, once people start saying, ‘We’re going to put you in this hospice’, then they know they’re going to die, don't they? So I think you'd want to spend your last few months with your family, wouldn't you? (Interview 5, Man aged 65–74)

Because hospice care was seen as clearly linked to inevitable death it was spoken about cautiously and warily by the white respondents but, at the same time, it was often referred to by them in highly idealised terms. These invoked what were perceived to be the essential elements of hospice care for the dying: ‘wonderful’ or ‘special’ staff; the ability to transform death from the expected bad experience to a good one, and the provision of care, comfort and ‘ease’. Thus hospice care seemed to be symbolic of the hope for the ‘good death’ among the white elders. These perceptions were especially notable among those who had had personal experience of hospice care, something that was markedly lacking among the Chinese sample. For example, Sally, a 90-year-old woman living near the local hospice where she had visited a number of friends who had died there, said:

. . . And a hospice would . . . I think the hospices must help people. That . . . I mean I've only been up to St [local hospice], I've never been in another one, but it's such a wonderful atmosphere and it, there's no, there must be, it's so quiet and so beautiful up there, it must be a great help to anybody who's ill. And I think that must help a lot. And they must have special nurses in these places, have they? (Interview 34, Woman aged over 85).

Another younger woman, who played an active part in a local community support network and had visited the hospice many times, echoed this view:

Audrey: Er, my opinion is if I was ill like that, personally, I would like to be in a hospice, er, for the simple reason that the comfort is there, you cannot always get comfortable at home, where in a hospice they spend all of their time making you comfortable and. . . . once they are comfortable, they are at peace and that is what they need I think, to me that is the reason, that is the reason of a hospice, that's what it is there for (Focus group 1, woman aged 75–84).

Among the Chinese elders, only one person said that they had heard of a Macmillan nurse, and only one quarter of the interview respondents (n = 12) said that they had heard of the term ‘hospice’. Of these, two people said that they had visited a hospice and four had known friends of relatives who had received care in a hospice. As with the white respondents, those Chinese elders who had heard of hospice made a link with imminent death. One relatively young woman, who described herself as ‘Westernised Chinese’ explained it in the following way:

But I think the Chinese would find it difficult to accept this; as when you are in there, they are people who are about to die . . . Entering a hospice means you’re proclaiming to the world . . . I am not going to come out of it (Interview 31, woman aged 58).

The ‘proclamation’ of imminent death made by entering a hospice was regarded in highly negative terms for several reasons. Being surrounded by others who were dying was perceived to be unhelpful and discouraging for the ill person, who would not be encouraged to maintain their daily activities for as long as possible and would lose hope of recovery. It also seemed to contradict assumptions about the right way to die: carrying on with life and maintaining good spirits until the end, as one woman, who had lived in the UK for over 30 years but had very limited English, explained:

I don't think the Chinese would prefer to go there. . . . they would not like the word ‘death’ . . . staring at it all the time . . . staring at it as they [try to] carry on with their life. Yes [otherwise] you might die without knowing or it is possible that you might just die; but if you were in a hospice, well you definitely would die; it seems that the word death would be thrown in your face all the time (Interview 22, woman aged 62).

Entering a hospice would also demonstrate that one had become a ‘burden’ to one's family and that there was no other option for care at the end of life. To this extent, hospice care was not seen as a positive ‘choice’ that one might make for care at the end of life. Instead it seemed to contradict important notions about family care and support during death. These were expressed clearly by Mrs Cho, a widow who lived near her adult children and who had strong views about the role of children in caring for their parents. She had cared for her own mother during a final illness many years earlier:

Mrs Cho: [people] would not have much opinion if they were ‘put’ there.

Interviewer: Right, what did the family think? Those who visited.

Mrs Cho: The family wouldn't have much response; if you really cared, you would have taken the elder home to stay; well, it is because the children did not care so they ended up there.

Interviewer: So they could not look after him and they would put him there?

Mrs Cho: They could not look after him and that was why they dropped him at that sort of place. . . . if you could afford it of course you don't want your parents to go to that sort of place, right? Unless you have no choice (Interview 29; Woman, aged 65).

As we shall see below, end-of-life care at home was not, however, a preferred option for Chinese elders; rather it was perceived that being cared for in hospital would allow the dying person to maintain a sense of hope, thus contributing to a sense of peacefulness. It was also perceived that in hospital it would be easier for the family to visit and provide the essential support and care that a person required. The relatively young, ‘Westernised Chinese’ woman described it thus:

The hospital would let you keep him company . . . the hospital would let the family have the convenience to spend more time with him; it is vital (Interview 31, woman aged 58).

Additional perceptions related to contamination and cleanliness of the home were also voiced: we examine these in more detail below.

In contrast to the Chinese elders, many of the white respondents expressed a preference for a hospice death over and above death in any other location, including home. The white elders reported that, while hospitals had the potential to provide high-quality technical care, their experiences of inadequate ‘basic’ care especially in relation to hand feeding and the provision of adequate pain relief and comfort, made hospitals a poor option for end-of-life care. Hospitals were also reported by the white elders as invoking ‘strangeness’ or ‘impersonal’ care; one woman referred to the problem of being perceived by care staff as ‘just a body’ (Interview 34, woman aged 85+).

Among some of the white female respondents, hospices were especially preferred because of their perceived ability to provide a ‘familial’ standard of care: a standard that they perceived was becoming hard to achieve with the rapid demographic and social changes they had experienced. For example, in one focus group a woman who had lived in a small rural community in her youth recalled the management of illness and death in her childhood and contrasted this with the present:

Catherine: Oh yes, not many people died away from home and they were laid out and everything at home, they were, I never laid one out mind you (laughter) They didn't give me that job, but er no and they need somewhere where they can finish their days in quiet and comfort and loving care 24 hours a day not just when somebody has got time to go and look at them, and that's what they get in [hospice] my own husband and lots of friends I know have been in [hospice] and they are absolutely wonderful there should be more hospices like that, and er, like I say, before not a lot of wives did full-time work so you were more or less expected to look after the family . . . 1 mean if we have [to look] after any one like that I don't think our age would er be upset by it, because we are used to it – but I don't think our young people are really used to it . . . yes; we lived with the dead as well as the living. But now no, er, life's too busy and so there needs to be proper care for the elderly (Focus group 2, women aged 75–84).

Such perceptions were not however limited to women. In another focus group in the study of white elders, two men debated the meaning of hospice, making it clear that for them it was associated with familiarity, comfort and care:

Frank: See I haven't any first-hand experience of [hospice] but I would think there are people there who you know [and] comfort you, you know if someone is in there you've got proper caring people who try to put your mind at ease. I'm quite happy with that Gordon: it's got a very good name, it's got a very good name for that hasn't it? (Focus group 3, part 1, men aged 65–74)

As we shall see below, one of the factors that seemed to underpin the attitudes expressed in both studies was that respondents were concerned about the impact on their children's lives of caregiving at the end of life: both Chinese and white men and women expressed worries about being a burden on their adult children and other relatives, and expressed a range of other similar concerns about care of the dying at home.

Dying at home

In the study of white elders, respondents tended initially to identify home as the preferred place to be cared for at the end of life in ideal circumstances because of its symbolic meanings: the presence of loved ones, independence, familiarity and as a repository of memories with which to support one's sense of ‘self’ (Gott et al. 2004). However, a range of practical and moral problems associated with care at home was recognised as the focus groups and interviews unfolded. These included: fears about dying alone; worries about being a ‘burden’ to family; and concerns about the caring skills of family carers and the risk of receiving inadequate pain relief. Many respondents were facing their own or their partner's illness, or had experienced bereavement in the recent past. Clearly, their concerns and perceptions were shaped by these. For example, one man who lived in deprived area of Sheffield, had experienced both a heart attack and a mild stroke, and lived with his second wife who was moderately disabled with arthritis. They had no support from health or social care services. He had previously experienced the death of his first wife from cancer and had been recently hospitalised with a heart attack:

Fred: That's when I would want to go in hospital, when I thought I was being too much of a trouble, you know, if you get incontinent and if you get . . . well having to wash beds and things everyday . . . in our situation we haven't got a dryer, but there's only two of us, we manage all right. But I don't know how we go on if we . . . and this would worry me, it would kill me if I were waking up every morning to a problem like that and knowing Fay had got to try wash the sheets and things, day after day, no drying weather and things like that (Interview 6, Man aged 65–74).

This view was echoed by a man living in a similarly poor area of Sheffield, who was divorced and who had one daughter:

Eddie: If he were incontinent he wouldn't want to put his wife through that lot; er, and in pain a lot, tha’ know, and I, I mean, again he wouldn't want, you don't want your loved one to see you suffering – I don't think so anyway. And I don't want to see my loved ones suffering (Interview 5, man aged 65–74).

As reported above, women especially emphasised how they did not want their adult children to have to engage in caring in the way that they themselves (and their mothers) had done. This was in spite of many of the respondents having traditional family structures with grown up children living locally and a wide extended family network. For some, this was clearly related to experiences of caring for dying relatives themselves in the fairly recent past:

Emma: I think circumstances vary, er, like if, if you are a, if you are an older person on your own, you know, you are better off in a hospital or a hospice or something obviously, but if you've a family they might want, you know, decide to want to have you at home. Like we had me mother, I mean er, me mother died a terrible death of er, lung cancer and we wouldn't let her go into, into care, we had her and nursed her at home and everything, but having said that, if I were in that position I wouldn't let my kids do that for me (Focus group 3, part 1 woman aged 55–64).

Carol: Yeah, yeah, your family's very important. But I don't think they'd be able to give you t’ nursing that a nurse would or your own doctor . . . (Interview 3, woman aged 65–74, respondent's emphasis).

Another aspect of the ‘burden’ of care which participants perceived as important was the personal and intimate nature of the caring that may be required. Many reported that while it was ‘right’ or ‘natural’ that spouses cared for each other in this way, they did not want, and could not envisage, their adult children delivering this sort of care to them (Gott et al. 2004). Among the Chinese respondents, many of these themes recurred, with worries expressed about: burdening younger members of the family (this was often presented as a wish not to interrupt the working schedules of one's adult children), providing continuous care, ensuring that the dying person was always accompanied and that death did not happen when someone was alone; and controlling pain and other symptoms adequately. There were also concerns expressed about the ability of younger family members to provide nursing care which would be sufficient to provide comfort. For example, three women with grown-up children who did not live near them, said the following:

If you were at home and anything happened, the young ones would not know how to deal with it . . . for example, with bathing. In the old days when the elders stayed at home they would have other folks to give them a wash; now you would have the nurses in the hospital to do this (Interview 26, woman aged 61).

. . . it would be clean and tidy to go to hospital. Don't burden the youngsters (Interview 20, woman aged 68).

. . . I would not burden my family: I would definitely not burden my family because they have enough to worry [about] . . . (Interview 24, woman aged 65).

The views of the Chinese women were echoed by the male respondents. For example, this man, who lived alone and had been in England for many years, expressed the following view:

If there is pain and suffering, it would be good to go to hospital; they would have people there to help you any time [and] give you medicine and so on (Interview 17, man aged 71).

As with the white respondents, there was a particular concern with the management of the dying body and of ensuring cleanliness, comfort and containing incontinence. Among some Chinese respondents these concerns took a more developed form, with worries expressed about the ‘contamination’ of home by death which would make it lose its resale value; or of fears of ‘contagion’ or ‘scaring’ of the family by illness. The following views were expressed by women who had lived in England for many years following emigration. The older woman spoke good English, while the younger woman's English was very limited. Both drew on a range of previous experiences of death, as well as their knowledge about the attitudes of their friends and acquaintances in the Chinese community, in shaping their responses:

And if you die in the house, you know, the house is not a good house any more. When you've had an accident in the car, no Chinese would buy a car that had been in an accident (Interview 27, woman aged 76).

[It] would cast this shadow on you; and they say if you die at home it would make the home ‘dirty’ . . . (Interview 25, woman aged 54).

Again, the views of the women were echoed by the male respondents. For example, this man, who spoke limited English, had lived in England for many years, and who lived in a Chinese Housing Association flat, expressed the following perception:

. . . the family do not want [them] to stay at home. Scared it would be contagious; this would be the most important problem. Because they worry it could infect the family (Interview 15, man aged 70).

Limitations

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

In presenting these findings, we are mindful of the methodological difficulties that we encountered in studying views about end-of-life care. Respondents were engaged in discussions about topics that were often avoided in day-to-day conversation, and the use of the vignette technique was to try to make it easier for them to consider what were potentially upsetting and difficult subjects. We were particularly concerned that the older Chinese respondents might see the interviews and focus groups as entering ‘inauspicious’ territory. Such a response could occur because traditional beliefs associated with death would tend to suggest that raising it as a topic of discussion would be perceived as bringing bad luck (Chow et al. 2000, Chan 2000). However, we found that working with the Chinese community in designing the aide memoires and vignette scenarios used in the focus groups and interviews made it possible to explore some complex views and experiences with regard to end-of-life care. Subsequent high attendance and enthusiastic participation in dissemination meetings with the participating Chinese communities (which involved people asking questions about cancer and end-of-life care, and voicing their own experiences) highlighted that our earlier fears about broaching these topics were at least partly unfounded. It should be noted, however, that some of our findings in relation to the Chinese community, may be attributable to the fact that the subjects of hospice and palliative care that we introduced to them were, in many cases, completely new.

Three further potential weaknesses can be identified in relation to both studies. First, the samples were necessarily somewhat limited in the sense that only those people who felt able to talk about the subject of the study took part, although attempts were made to maximise socioeconomic diversity. Secondly, the participants were not ‘patients’ and, as such, not facing these choices about end-of-life care imminently, although many (especially in the study of white elders) reported having thought about these issues at length prior to their participation in this study, or had personal experience of caring for dying relatives. Lastly, as Thomas and colleagues have noted in their reflections on a study of similar issues, presenting views and preferences about end-of-life care is fraught with difficulty ‘. . . preferences for place of final care and death were not simple choices . . . but took the form of a stronger or weaker leaning in one direction, qualified by speculation about how things might change with events’ (Thomas et al. 2004).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

The data collection for these studies took place at a time when the policy rhetoric surrounding end-of-life care in the UK began to focus strongly on increasing the numbers of home deaths from cancer and other diseases. This rhetoric is underpinned by three assumptions: first, that home is the preferred place of care and death for most people; secondly, that there exists a monolithic family culture in which members prefer and are willing to give and receive care from one another; and lastly, that if there are differences between subgroups within the population, these are unlikely to run counter to the dominant discourse surrounding death, in which death at home tends to be held up as one of the key factors in achieving death with dignity. None of these assumptions have been adequately empirically evaluated. This paper makes a contribution to this gap in knowledge by presenting findings from studies of older adults from very different cultural backgrounds but who were living in the UK in similar urban environments.

Although most older people expressed an immediate preference for being at home during a final illness, this view was quickly moderated during discussion and reflection which the interviews and focus groups allowed. The findings particularly contradicted our expectations that the Chinese respondents would favour death at home. These expectations were formed in the context of a literature which suggests that traditional cultural values mean that death at home is regarded as vitally important. For example, in a review article about the cultural importance of death at home in Taiwan, Tang (2000) notes:

When death occurs at home, the spirit of the dead can reunite with the forebears. Thus, ‘the fallen leaves can return to their roots’. This is an important traditional concept of Chinese religious beliefs. When an individual dies at home, the spirit of the dead has a place to rest, and the dead will not be a ‘koo’un’ia’ kui’ (spirit wanderer), which is a solitary soul with no one on whom to depend (2000: 368).

Our study took place in city environments and it seems that one possible explanation for the different position taken on this issue is to do with the tendency for transient inhabitancy or ownership of modern urban housing. Unlike many years ago in Chinese ancestral villages, homes are no longer retained by one family for generation after generation. Nor is home one dwelling insulated from contact with others. Wee (1997) has observed how this trend in Hong Kong has resulted in a change in preferences for dying at home for practical reasons of space and convenience; an observation supported by Yaw et al. (2005), as reported above. Our data seem also to suggest that death at home, or the passage of a dead body past the living spaces of others, risks making those dwellings unattractive to future buyers, thus bringing misfortune to family and neighbours. It seems that deeply held notions of collective responsibility, in which one's personal interests (wishing to die at home) are secondary to protecting the wellbeing of one's family (by protecting the value of the dwelling the family may wish to sell), come into play here, showing a pragmatic adaptation to the trends of the late-modern era (Chen 1996).

The concerns of the Chinese elders to protect the value of family assets from contamination, were linked to the expression of other views which they shared with the white elders. Both groups of respondents perceived similar difficulties with regard to the practicalities of care and not wanting to be a burden on others, especially when this might interrupt the lives of their adult children. Among the white women, this was expressed as a desire for their children to avoid the trap of expectation that had confined them, while among older Chinese people there were concerns not to interrupt the heavy working schedules of the younger generation. Research into attitudes to family care suggests that white communities seem to prefer to maintain a degree of independence from their adult children who, in turn, do not automatically see themselves as first port of call for assistance (Walker 1993, Finch 1995, McGlone et al. 1996, Calnan et al. 2006). It is often assumed that, in contrast, people from minority ethnic groups prefer and are able to seek help with personal care from within the extended family. However, research among eight different ethnic groups living in the UK, including 11 Chinese older people, suggests that it is relatively uncommon for personal care to be provided by anyone other than a very close relative, usually a spouse (Moriarty and Butt 2004). In the same study, it was observed that the Chinese respondents were, like the white respondents, unlikely to have a child living within a 20-mile radius and that they had not had an opportunity to develop non-familial social networks because of their history of working in occupations with long and unsocial hours (2004: 196).

Our respondents were pragmatic and realistic about the impact of social change on the family's skills in caring, acknowledging that care provision during death and illness was no longer a common experience and reflecting that better-quality care was likely to be provided out of the home environment where access to those with specialist training for the purpose was possible. However, beyond these pragmatic issues, many concerns about home and family care, which were expressed by both groups, took the form of worries about containment of what Lawton (2000) has called the ‘unbounded body’: that which can no longer maintain control over bodily functions, or threatens incontinence or the expression of overwhelming pain and suffering. Neither Chinese nor white older people wanted their children to have to deal with the bodily consequences of dying, reflecting what Twigg (2000) (drawing on Ungerson (1983)) observes is the powerful influence of the incest taboo: ‘people are disturbed by activities that violate this norm; personal care can literally mean uncovering a parent's nakedness’ (2000: 71). Twigg argues that it is for this reason that older people will often prefer a stranger, particularly a nurse, to deliver intimate care. Nurses are culturally sanctioned to deal with the body and moreover, are expected to behave in a manner which provides comfort and emotional support to the recipient of their care within a bounded set of expectations (Twigg 2000: 74). Our respondents’ preferences for care in hospices or in hospitals during dying can be better understood in the light of this interpretation, since it is in these environments that older people are most likely to come in close contact with nurses who can manage the ‘dirty work’ (Lawton 2000) associated with the body without risking sexual transgression and with the possibility of doing so in an emotionally supportive manner which mirrors notions of what is ‘ideal’ familial care.

Among both groups of respondents, hospices were strongly associated with death and dying. White elders perceived hospices in idealised terms almost synonymous with the ‘good death’, and tended to express a preference for death in hospice over and above either home or hospital care. In contrast, for those Chinese elders who had heard of them, hospices were regarded as repositories of ‘inauspicious’ care contravening the circumstances believed to contribute to achieving the ‘good death’: maintaining the good spirits necessary to live as death approached, and demonstrating the duty and value of family care during dying. Unlike the white elders, the Chinese respondents appeared to have a strong preference for hospital care, linking this to the availability of nursing care and the possibility of maintaining hopefulness in the face of illness.

One way of interpreting the white elders’ idealised preferences for hospice care is to set them in the context of what Walter (1994) and Seale (1998) have described as a discourse of revivalism, in which personal knowledge and awareness of dying, choice, and the emotional accompaniment of the dying are central features. This ideology has arguably permeated the public consciousness about the best way to die as a result of its widespread representation in a range of media (Seale 1998) and through the extensive fundraising activities of the voluntary hospice movement. As Long (2004) has observed in a comparative study of the US and Japan, the revivalist discourse of the hospice movement is of essentially Western origin, and usually entails an implicit critique of the ‘medicalised’ death of the hospital. Long reports that although elements of a revivalist discourse can be found in expressions about the good death in Japan, it is much less widely known and accepted as a model for dying than in the US. Instead, Japanese people tend to focus on dilemmas of disclosure and informed consent, emphasising these against a backdrop of strongly held beliefs about the responsibilities of caregivers for maintaining an atmosphere of calm and hope. In this context, open awareness of dying is seen as an unnecessary cruelty (2004: 921–2). These issues seem to be similarly played out in the views of the Chinese respondents reported here, most of whom had little or no access to English media because of language barriers.

Conclusion and implications for service provision

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

Much palliative care policy assumes the existence of a family culture in which members prefer and are willing to give and receive care from one another. Social research into attitudes to family care among white and ethnic minority communities does not support this supposition. Few older adults of all ethnicities have family carers readily available to care, and yet it has been observed that the ‘sustainability of keeping terminally ill people at home depends on how close their families are and how able they are to give care to their loved ones’ (Gomes and Higginson 2006: 517).

While there are differences in the findings from these two studies, it is the similarities that are perhaps most noteworthy. The shared concerns raised by older white and Chinese people have much to say about the position of older adults in UK society and provide an important pointer to the need for changes in service provision to ensure that their worries and fears with regard to end-of-life care are addressed. Such concerns are rooted in a reality of enduring marginalisation in relation to good quality end-of-life care: attention has been drawn to this in a report by the Healthcare Commission on the progress of the National Service Framework for Older People in the UK (Healthcare Commission 2006).

The findings presented here suggest that there needs to be a new focus of attention on the ageing and dying body in a way that recognises that personal and intimate care is not merely a set of tasks, but is inextricably bound up with feelings of value, dignity and personal identity both for the dying individual and their companions. This means any ‘preferences’ expressed for care are mediated by a range of complex social, interpersonal and pragmatic considerations (Morris 2003), and cannot be regarded as culturally determined or ‘scripted’ (Gunaratnam 1997). The shared preferences for institutional care at the time of death, although differently expressed as hospice or hospital, can be understood by reference to shared ideas about the best ways of caring for the body during dying, especially the central role that nurses are perceived to have in this process. The preferences expressed by white elders for hospice care are a particular challenge to the trends for shorter patient stays in hospices and for increasing age to make it less likely that one's death will occur in a hospice (Seymour et al. 2005). Similarly, the apparent rejection of the hospice model by the Chinese elders is a challenge to the voluntary hospice movement's claims of inclusivity, while their preferences for hospital deaths run counter to the assumptions underpinning current policy that death at home is necessarily preferable to all.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. The studies
  5. Methods
  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References

We are grateful for funding from the ESRC (award number: L218252047) and from the Health Foundation, which made this research possible. We thank all those who took part in the studies reported and the community groups who enabled our contact with respondents. We acknowledge with thanks the contributions of Sam Ahmedzai, Gary Bellamy, David Clark and Merryn Gott in the study funded by the ESRC. We are grateful for the assistance of Professor Cecilia Chan from Hong Kong University who helped us to make sense of the data from the study of Chinese elders.

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  6. Results
  7. Limitations
  8. Discussion
  9. Conclusion and implications for service provision
  10. Acknowledgements
  11. References
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