Carer: Oh yes, oh yes. Fortunately, eldest daughter lives just round the corner, I’ve got two sons on [road name], the other daughter’s over on [road name] - I’ve got M. next door, she’s a pensioner, but she’ll ring me every other day to see if I’m all right. I have the warden, P., to talk to if I’ve got any problems. […] I’m quite happy with all that, everybody’s been ever so good and Mr. M. there he said, ‘If I ever see your curtains still shut at 11.00, I’ll come across.’ So people get to know, don’t they, with you being on your own. L15, sister, age 66, bladder, CA(B)
Female carer: But everybody’s been marvellous. The phone’s been red hot,– or it was then, and I had people calling. I had letters, cards – it was marvellous
Interviewer: So was that just from people around that you know since you’ve lived here?
Carer: All over the country, Scotland right down to southern England – yes – oh, they were marvellous. […] There’s two or three of his friends that still contact me, they still come to see me, and they’re the ones that have bought his stuff. [NB She had financial problems after his death and sold the car and many of her late husband’s possessions in order to pay the rent] L1 wife, age 77, oesophagus, CA(B)
Membership of a church was important to a few:
Female Carer: [The church is] where I swear I got the strength from and I get the strength each day, each day I get the strength to live through that day without him. It doesn’t ease the pain really, I think that’s going to take some time. But I’ve got this friend to do things that I have to do, I’m not sitting – sitting crying. I’ve cried a lot and still do, but I keep myself busy and I do things that I would do. I’m fanatical for cleaning. Mind, I haven’t touched this place today because I’ve been out. I wanted to get some bits in for the garden because that takes up a lot of my time. L14 wife, age 70, gastric, CA(B)
Interviewer: How important has [being a Quaker] been, over and above the health services and your friends and family?
Female Carer: A lot of them [have been supportive]. Not all by any means. It is important. It’s a very safe kind of space is a Quaker meeting when it’s happening, and the actual worship is where I think I have let go most often of defences and allowed myself to grieve most obviously as it were. I don’t cry easily, but I can in meetings sometimes. And the people are friendly and supportive, and they will go on being there. It’s not something they’ll offer for a few months and then they’ll sort of forget. You know, I can say, ‘Can I take up your offer of supper next term?’ Because it’s not kind of
short term. It’s going to be there, kind of supporting underneath without being too noticeable. It’s going to be there to be called on if I wanted it. So yes, I think it’s important. There’s a level of trust between people that allows you to say what is going on quite easily. You don’t have to answer, ‘Yes, I’m fine,’ to every inquiry. You can actually say what it’s really like. L10 wife, age 52 CA(B)
Summary: key findings
This chapter has examined the social context of dying cancer patients. It has highlighted factors that shape the nature and type of informal care received by patients. This, in turn, tells us a great deal about what determines actual place of death as well as patient and carer perceptions
concerning place of death options. Patients and carers are generally realistic about the potential capacity and limitations of the informal care resource in their particular social setting. This moulds their place of death preferences. It means that a sense of ‘What will probably have to happen’ generally replaces more abstract notions of ‘what I’d like to happen in an ideal world’. Key social context factors that influence place of death preferences and outcomes are as
follows:
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Patients’ place of death preferences were formed with close reference to the network of social relationships in which they are embedded. Pre-illness social networks andrelationships were taken account of by patients in their assessment of the how and where of end of life care. In fact the nature of the informal care resource available to patients was generally of primary significance in patients’ assessment of how their support can be met.
•
The majority of patients described very supportive informal social contexts. The care received often included both practical and emotional support, though individual carers in any network may not be able to provide both types of support.•
The key informal carers were family members, especially spouses, daughters and sons. Friends and neighbours also played a significant, if generally lesser, role in patients’ support networks. As noted above, there was a strong sense that intimate care needs could only be met by particular carers, and that aspects of the illness management needed to be kept within family boundaries. However, those of ‘second order’ closeness could and did provide important practical and emotional support. Variations were reported in the nature and quality of neighbourly support both within and between urban and rural locations.•
The assistance offered by family and friends was usually taken up and much appreciated. At the same time, patients did not want to be a ‘burden’ – physical or emotional - on carers, and were especially mindful of the other imperatives in carers’ lives - for example, thebe a burden was a wish to ‘spare’ loved ones excessive emotional distress. This could influence place of death preferences. In particular, some patients expressed the desire for a hospice death because this would decrease the burden on their intimates.
•
Despite a willingness to accept offers of support, maintaining a significant measure of independence and self-care for as long as possible was thought to be important by most patients. In some cases, asking for help was seen as a last resort. Loss of independence was a matter of considerable regret for all, tied in as it was with a sense of loss of ‘who I am’, of one’s identity.•
Patients sometimes expressed their concern for the long-term (that is, post-death) well-being of carers by wanting to protect them from any lasting emotional effects of ‘finding me dead in their/my house’. This oriented a few patients towards a preference for a hospice death.•
Patients made an assessment of a carer’s physical and emotional capacity to care. For example, a spousal carer may also have serious ill health and/or frailty, or, in a minority of cases, the quality of the relationship may not support a sense of ‘being safe’ or loved. This influenced patients’ place of final care preferences. Further, an assessment of the roles that could be played by a carer were influenced by beliefs about what kind of caring it is ‘proper’ for a particular relative or friend to perform. Thus, social mores may rule out intimate caring by a male relative, by an offspring, or by a friend. This impacted upon place of death preferences, again directing patients towards professionally provided end of life care in an institutional setting.•
Carers’ narrative accounts testified to the physical and emotional stress of caring.•
A number of carers were determined to care for their husband/wife/ parent/sibling at home but acknowledged their worried uncertainty about how they would cope with particular eventualities, especially with pain episodes and other distressing symptoms. There were uncertainties about what formal care support might be forthcoming in such circumstances. However, some carers also acknowledged the requirement to ‘go along with’ the patient’s wishes about place of final care and death in situations where these wishes did not match their own.•
Patients who lived alone (n=19) tended to have given thought to their future carearrangements, though not in all cases. For most, there was a resignation that ‘when things get bad’ they would have to end their days in some form of residential care, with the
hospice being the favoured option. Most did not see a home death as a possibility. However, in Chapter 4 we saw that, of those in this group who had died by the end of September 2002, 8 died in hospice, 3 died in hospital and 3 died at home.
•
Our study has underlined the importance of different dimensions of the patient’s social context. In assessing the patient’s need for formal health and social services, health and social care professionals need to gain a fuller understanding of the contours and dynamicsof the social relationships involved in patient’s social setting. The informal care resource has to be assessed so that it can be worked with, to the benefit of both patients and carers.