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).