Rosa (Area 1)
Rosa, an 83-year-old widow, was living in sheltered accommodation when she sustained a stroke. She had a very supportive family who visited her every day and undertook cooking, shopping, laundry and cleaning. Her only source of income was her pension. Initially, Rosa made a good recovery and plans were made for her to be discharged to her daughter's home with the support of family and home care (provided by social services). However, Rosa suffered a further stroke which rendered her doubly incontinent and wheelchair bound. The social worker suggested that a nursing home would be the most appropriate discharge destination; the family, however, were opposed to this idea. Because of the pressures on bed utilisation and the operation of waiting lists for accessing social services funding and equipment, staff begin discharge planning as early as possible. Moreover, despite the rhetoric of choice and individual need, in complex cases, such as Rosa's, there is an incentive for health and social services providers to promote a nursing home rather than a home placement, because the former are easier to organise and are less likely to be hampered by waiting list issues. In the following extract, which is taken from a meeting with the family and the social worker, we can see how the subtle pressures created by resource considerations impact on the so-called choices of clients and their families. The meeting was arranged by the ward manager in order to speed up the family's decision making regarding discharge:
Son-in-law: I am quite happy to support [Jayne, Rosa's daughter] in anyway I can. I know, like when my mother was ill if somebody said nursing home, I wouldn't do it. You know, if it is an option we can go for, then we would probably like to talk about it a bit more. [ . . . ]
Senior social worker: You need to go and look at some homes, you are also going to need to talk to the nursing and medical staff here about physically what they do. [ . . . ] Because you are coming in after work, you need to know literally, what physically, what a day is going to mean for you. [ . . . ] Can you cope with it? Can you cope with the distress of when you need to move her and she is crying out in pain when there is no way of moving her without pain. [ . . . ]
Son-in-law: We don't know whether the meeting was brought today because doctor had had a chat with you or whether she has been in some weeks now and we can't do much else for her can we but stick her in a home. [ . . . ]
Senior social worker: Look I think you need to get something absolutely clear. There is no desire to ever shovel people out of hospital. There is recognition that sometimes, a hospital does not offer the best quality of life. Right? And everybody understands that. Because hospitals are busy places, there is no privacy, there is no normality, there is no peaceful space. Now there comes a time when you have to start saying, right it is time to move on, is it time to start making decisions. If you were talking about a nursing home, what a nursing home offers is an individual room where you can have nursing care and where you can have your own things around you and where as a family you can see the person you care for and obviously you care or you wouldn't be here. [ . . . ]
Son-in-law: Of what you know of the case, do you really think it is the wrong course, your honest opinion, or have you been told that she is so bad we couldn't cope, or are you thinking well it's up to them. In your honest opinion.
Senior social worker: I can't give you my honest opinion in such a simplistic way, it is your voyage. In a sense and to give you information and help in your directing. I don't know you, I don't know what you are capable of. I don't know how you would cope with the pressure sore. [ . . . ]
Daughter: With a pressure sore?
Senior social worker: Yes, I don't know how severe an issue pressure sore management is going to be with Rosa. I don't know how you can cope with getting up three or four times a night to turn somebody. These are things you are going to have [to consider] (Tape recorded meeting – GFN0125).
Despite the pressure exerted on them, the family decided to take Rosa home. This created delays in her discharge because no arrangements had been put in place to support home care, as the team was working towards a nursing home placement and had assumed that the family would accept this recommendation. In order to support a home placement social services home care provision was needed and several items of equipment were required: bed, cot-sides, a hoist and a commode. Discharge was delayed initially by two weeks because no equipment was available. The district nurse completed a continuing care form to see whether the health authority would fund a mattress in an effort to access the equipment faster. Staff struggled to find a way around these difficulties and ensure a discharge. At one point it was suggested that Rosa be discharged without equipment but nursed in bed. However, this arrangement would have meant that no home care could be provided because manual handling regulations prevented home carers lifting without appropriate equipment. As pressure on beds increased, the consultant, who was rapidly losing patience, decided that Rosa be transferred to a nursing home until a home discharge could be arranged. Fortunately, winter pressures monies became available to fund equipment. When the equipment became available there were further delays as social services home care was unavailable because they were stretched to capacity.
A striking feature of Rosa's case was the low levels of trust that existed between the family and members of the team. This was a feature of many of the cases in Area 1, in which the challenges of accommodating patient needs led to staff making negative formulations of family members who did not find the care arrangements offered acceptable. Frequently, families were portrayed as not operating with the patient's best interests at heart. In Rosa's case, the family are presented as being driven by financial concerns:
Health visitor: The relatives, ((laughing)) they’re all keeping an eye on how much money there is available. [ . . . ]
GP: Yeah, of course they are.
Physiotherapist: They’re well on the ball, they’re in front of us, they know exactly how much it is going to cost (Fieldnotes – GM0825).
The family's difficulty in reaching a decision was read by members as a stalling tactic in order to allow them to work around a holiday:
Ward manager: The family are going to America.
GP: The daughter who is going to look after her is going to America? [ . . . ]
Occupational therapist: They've strung this out really, they knew the equipment was going to take a long time to get.
Consultant: If it's going to take a while she can, she should go into a nursing home until its ready.
Occupational therapist: Yes, what about that! (Fieldnotes – GM0915).
Service providers expressed doubts as to whether the arrangements would work, and predicted that within a few days Rosa's family would realise that they were unable to cope. But, contrary to the team's pessimistic predictions, Rosa continued to progress. Her continence improved to the extent that she was only having to wear pads at night and she was well enough to attend the local day centre once a week. Nevertheless, at the end of the study, Rosa's daughter was beginning to feel the strain and was trying to increase Rosa's day care attendance to afford her some respite.
Brian (Area 2)
Brian was 87 years old when he suffered a right-sided stroke. He had been fit and well hitherto and had played golf regularly. He lived in a converted barn in the grounds of his son's home. His son was a managing director and his daughter-in-law ran her own business. Brian had extensive nursing needs which ordinarily would have resulted in his admission to a long-stay bed, however, his son expressed the wish that he should return home when he was well enough. Although health authority funding would not support the level of care Brian needed to be discharged home, the family had access to private finance which allowed them to pursue this option. Brian required a complex package of care which necessitated close collaboration between the family, a private care agency and the community nurses. As these arrangements take shape, Brian's ‘needs’ become renegotiated in terms of a workable and affordable care package. The following extract is early in the case conference in which, following an emotional statement by Arthur, Brian's son, about the family's desire to have Brian home, the senior staff nurse outlines the level of care Brian will require.
Staff nurse: We’re always treating him with two nurses. Because he's unable to move himself [ . . . ] And we turn him every four hours. [ . . . ]
Occupational therapist: So we are looking at somebody being up during the night.
Staff nurse: During the night, yeah, for two turns.
AJ: How many do you need to turn?
Staff nurse: [ . . . ] We never treat him with less than two [ . . . ] But then, you needn't have two people there all the time. You could have a second person going in at those times (.) But, of course, it's unpredictable then when he asks to go on the toilet.[ . . . ] I mean, he wears an incontinence pad anyway so if they couldn't get him up in a hoist then I mean, he wouldn't be a great inconvenience for him to use the pad. [ . . . ]
Continuing care co-ordinator: The district nurses [ . . . ] could support up to five visits in 24 hours [ . . . ]. Morning visits, an afternoon, an evening, and two visits by night. The evening and night visits, they work in twos anyway [ . . . ]
AJ: I suppose there’ll be one person at the place all the time anyway won't there?
Social worker: Erm, if we’re talking about one qualified person to stay there for the full 24 hours, that works out at approximately £326 a day which times seven comes out at £2,280. That's for one qualified person. Now whether that's considered necessary with the district nurse input. [ . . . ]
Staff nurse: So you’ll probably need a carer maybe.
Social worker: That might mean, because obviously they’ll have direct contact with the district nurse, if anything came up that they didn't feel qualified to handle, plus, there's the regular input during the course of the day. Now, that works out at £500 (Tape recorded meeting – CM0812).
Whilst throughout the case there were frequent references to money not being a problem for the Jenkins family, it is clear that Arthur had not appreciated the full costs of his father's care:
AJ: These figures are amazing aren't they? I mean, £2,228 for a week comes to over £120,000 a year. I mean. No-one can afford that, can they? [ . . . ]
Staff nurse: Most people would go into long-stay care with qualified nurses. [ . . . ]
AJ: That, £500 a week, is about, I guess, what we can afford. But, I'm worried now that with all the extras on top of that like, feeds and medical instruments and hire of beds and all the rest of it.
Continuing care co-ordinator: It's all sorted. The district nursing service. The district nurses can order a hospital bed and cot sides, the hoist (.) commode, catheter stand (.) inco products (Tape recorded meeting – CM0812).
Having been reassured of the facilities that would be provided by the health authority Arthur requests that Brian be provided with a bed the same as that he has been nursed on in hospital. When it emerges that this is not available in the community, options for purchase and hire are considered.
AJ: Erm, that magic bed he's been on. It's been a huge success from our point of view. I mean. I don't know. I don't think he'd have had such a pleasant time if he hadn't had it. Would he? I don't know.
Staff nurse: No. It'd make our nursing life a lot harder. [ . . . ]
Continuing care co-ordinator: No. His will be a King's Fund bed. It won't be an electric one.
AJ: Well. I'm really keen to get the same quality stuff. Even if I have to pay or hire it (Tape recorded meeting – CM0812).
At the close of the case conference it was agreed that the team would work towards a home discharge. Arthur Jenkins would explore care agencies to provide 24-hour unqualified care. The carer would be supported by community nurses who could make up to five visits a day, this being the maximum input they were allowed to provide. Certain equipment would be provided through the health authority but the family would privately fund the electronic bed.
Following the case conference, the district nurses, continuing care co-ordinator, social workers, senior occupational therapist and a ward nurse met to specify in detail Brian's daily care needs. The meeting displayed a number of interesting features. First, the extent to which resource issues figure prominently in the text. Secondly, how far needs are renegotiated in order to fit service availability. One of the critical issues in managing Brian at home was manual handling. Brian was a heavy man and, owing to limb contractures, very difficult to lift and transfer. In order for his package to work, it was essential that district nurses were available at the appropriate times to assist the home carers to turn and lift him. This raised a number of issues in relation to resource allocation.
First, once all Brian's daily care needs had been mapped out, it became clear that he required six visits by the district nurses and the maximum he was entitled to was five. In the following extract staff try and negotiate how work might be organised in order to ‘lose’ the extra visit:
District nurse team leader: Well, I think we’re looking at six [visits from the district nurses].
Occupational therapist: [ . . . ] And to get rid of that it would be useful that, when the care agency were sort of changing shifts, they could double up and do a turn then (Tape recorded meeting – CM0813).
The availability of only five district nursing visits also meant that Brian's treatment schedule needed to be amended:
District nurse team leader: I mean, if we can work it out with the agency that they can double up and do the turns when they’re doing their changeover, and whether they are allowed to give water or do the feeds – I mean, the medication, probably not. We can sort that out. Three times a day. That's not a problem. But I mean, if they can do the water and even his bolus feeds, is it?
Occupational therapist: Yeah.
District nurse team leader: And sort that out. Because this here ((pointing to the care plan)) would be three night visits which we couldn't.
Occupational therapist: We'd have to get rid of one.
Staff nurse: I mean. The thing is, he could have his water overnight, which sometimes we do do (Tape recorded meeting – CM0813).
Secondly, in order to make the care arrangements work it was necessary to negotiate role boundaries between health and social care providers. For example, it emerged that home carers were not permitted to give prescribed substances. It was therefore necessary for the family to purchase the thickened drinks Brian required in order to prevent him aspirating, rather than have them prescribed by the doctor. Moreover, as a result of the changing boundary between health and social care, washing and hygiene needs were no longer considered a health responsibility. So Brian's package of care necessitated a willingness on the part of the community nurse team leader and home care manager to work with a flexible definition of health need in order to justify the case. Brian's case reveals very powerfully how the processes through which a case is categorised as either health or social care emerge from practical concerns and, in the case of the district nurse team leader, a sense of distributive justice:
District nurse team leader: At the initial meeting it was agreed that the agency would be responsible for his hygiene [ . . . ] the feeding, the food and everything, and we are responsible for his PEG tube, but they are responsible for his food that he eats orally, hum, but they were having problems – some of the carers – with washing and dressing him in the morning, because he is so stiff at times. I mean, I am being quite flexible actually, because I could have said ‘no, Arthur, you will have to pay for someone else to come in’. But as far as I am concerned he is paying out enough money as it is for care to keep his dad at home. We are going there anyway, and I can put his stiffness and his awkwardness, not in himself, in his body down to his medical condition, so I feel that nursing will help (Interview – CIDNTL1008).
There are clear resonances here with other studies of resource allocation which have revealed how staff bring into play theories of local justice when accommodating need. The notion of ‘local justice’ (Elster 1992) refers to the conceptions of justice that are deployed by those people in a position to influence the distribution of scarce resources. Vassy (2001), for example, describes how notions of ethical practice underpinning the work of staff in a French Emergency Department led them to make treatment exceptions in the case of disadvantaged social groups, who would otherwise have been re-directed to another department. In a similar vein, Hughes and Griffiths (1997) have argued that conceptions of ‘deservingness’ enter into the decision-making processes through which clients were ruled in and ruled out of neuro-rehabilitation. In this study, it was in those cases in which families were making a substantial financial contribution to the costs of their care that staff oriented to issues of fairness. This is in stark contrast to the negative formulations of those families unable to make a financial contribution to their care package, but who had strong preferences for the quality of discharge arrangements.
Brian was eventually discharged with 24-hour home care, supported by five district nurse visits, an electronic bed and hoist. But the fragility of the arrangements quickly became apparent. Concerns were expressed about the demands on the home carers because of the difficulty in lifting and moving Brian. Indeed, the package was deemed to have worked only because the main home carers had the necessary physical strength to cope with Brian. At one point, the home care agency sent in extra support (for which they did not charge), because the carer allocated to Brian's case was not strong enough to cope, and another left after 24 hours for the same reason. Additional problems arose in relation to the negotiated arrangements between the district nurses and home carers. As we have indicated, in order to make Brian's package work, the district nurse team leader deployed a flexible definition of health need. However, the arrangements ran into difficulties when bank nurses, who not being privy to these informal arrangements, were not prepared to stretch the boundaries of their role in the same way to assist the home carers with Brian's hygiene needs.
It is interesting to ask why health and social care providers in this case were prepared to negotiate a complex care package, whereas in Rosa's case, they attempted to pressurise the family into a nursing home option. The team's willingness to negotiate in order to find a suitable package contrasts markedly with the social worker's emotionally weighted attempt to persuade Rosa's family to accept the preferred option of the team. First, Brian met the continuing care criteria. This meant that he qualified for non-means-tested health authority funding, and as a consequence, the team were unlikely to incur delays waiting to access funding, or equipment, through social services. Secondly, as we have indicated, Brian's son had access to considerable private finance to support his care. Thirdly, he had good quality accommodation which would support care at home. Fourthly, and perhaps most significantly, Brian's relatives had the necessary social capital to work the system:
Private home care services manager: He is a very clever gentleman [ . . . ] The first thing he did at that meeting was to say several times that he is very ignorant about this, but you can be sure he is not half as ignorant as he was pretending to be [ . . . ] he disarmed everybody. Everybody was very helpful, trying to do the best they could for him because he was so nice and grateful and said so many times how well everybody was doing. [ . . . ] Everybody did everything and he got exactly what he wanted out of that meeting. [ . . . ] He has got the extra care in the morning and the evening [ . . . ] without even paying for it. He got it. And he manipulated that meeting totally without anybody suspecting really that he was doing it (CIPHCAM & C1007).