The expansion and transformation of the modern hospice movement in the UK

Like the other alternative institutions and reform movements described above, the hospice movement received widespread popular support at a 'grass roots' level; support which explains the vigorous growth and diversification of the movement's provision since the late 1960s. As James describes, over the past few decades, 'energetic community groups - schools, churches, women's groups, rotarians - have joined with major charities, NHS staff and eventually government to plan and finance a thirty-fold increase in hospice provision' (1994: 102). From their inception, most hospices were dependent not only upon voluntary contributions to provide initial capital and running costs, they also relied strongly upon unpaid volunteers to perform a wide variety of tasks such as counselling patients, transporting patients to and from the hospice and staffing reception points (Field and Johnson 1993: 198, 200). The ideas of the hospice movement, then, were clearly ideas that many ordinary people identified with.

Indeed, in spite of the period of economic depression that occurred during the early 1970s, a large number of local groups and charitable organisations successfully raised the money necessary 'to build a hospice'. Yet, because most of these initiatives were brought about by individuals and groups at a local level, the rapidly expanding movement lacked an overarching organisational framework. Local groups often had little idea how their hospice provision would fit in with other kinds of service both locally and elsewhere (Lunt 1985: 754). Further problems stemmed from the fact that, while it was relatively easy to raise the money necessary to establish new hospice facilities, many schemes were beginning to run up ever larger deficits to meet running costs (Taylor 1983: 17). Consequently, the NHS was being placed under increasing pressure to maintain services which it had neither initially planned nor established: by the 1980s virtually all hospices came to rely upon the NHS for at least partial assistance with their running costs.

It was largely due to these organisational and economic pressures that, from the mid- to late 1970s, the content and structure of the hospice movement began to change quite rapidly. One of the most substantial changes involved the progressive incorporation of hospice units into the economic and organisational framework of the NHS. Lack of coordination and disparity in service provision prompted the decision of one of the main charitable organisations, the National Society for Cancer Relief (NSCR), to provide the capital for hospice services only if they were built within the grounds of NHS hospitals, and on the understanding that the health authorities would take responsibility for the full running costs. 'This policy', as Taylor suggests, in part 'indicates the desire of NSCR to influence practice within the NHS, but also reflects a realistic appreciation ofthe need to secure running costs in the future' (1983: 40). The first NHS hospice was founded in 1975, and by the time I began my fieldwork in 1994, fifty out of the total of 193 inpatient hospice services received joint or separate funding from the NHS and NSCR.17

The reforms that have taken place within the NHS since 1991 have brought palliative care services ever further into its organisational framework (I should add here that 'hospice care' and 'palliative care' are now commonly thought to be synonymous, although palliative medicine in fact only became an accredited medical speciality in 1987 (Ahmedzai 1993; Clark and Seymour 1999)). The NHS now works on a contract basis with a variety of service 'providers' competing in the market place for funding from NHS 'purchasing' bodies (Clark 1993: 174).18 In order to secure either full or partial funding from the NHS, all hospices, including those in the independent sector, must sign a contract with a health authority or other 'purchaser', committing them to provide care of a certain type, standard and cost, and to demonstrate that the standards are being achieved by means of an audit or evaluation (Walter 1994: 167; Neale 1993: 60).

Since the late 1970s and early 1980s, there has also been a diversification of hospice provision, with a shift in emphasis away from the establishment and funding of inpatient units to the provision of home care, day care and other services (Griffin 1991; Seale 1989). Lunt explains this shift as stemming in part from the fact that, by the 1980s, central government policy on health service funding has limited the ability of health authorities to commit themselves to paying the revenue costs of inpatient units (1985: 755). Taylor similarly suggests that the emphasis the hospice movement now places on home care and day care 'follows in the footsteps of similar developments in the NHS towards early discharge of patients into the community ... in order to release expensive in-patient beds and maintain patients where they prefer to be - in their own homes'

(1983: 32).19 Consequently, it has increasingly become the normal practice of general practitioners to keep patients at home for as long as possible, and only to admit them to inpatient units for short periods and during the final and most distressing stages of their illness (Taylor 1983: 15).

A number of hospice professionals and researchers have expressed concern about the impact these economic and organisational changes have had upon the hospice movement (Clark 1993; Wilkes 1993). Because the movement started off as a critique of the practices occurring within hospitals, it initially, and intentionally, developed outside the framework of the NHS.20 However, as we have seen, hospice services are progressively 'entering into partnership with the same system that they broke away from' (Ahmedzai 1993: 142); a partnership which, as some writers have suggested, may cause their overriding ideological goals to become compromised. James, for example, has pointed to the 'routinisation' that can occur within NHS-sponsored hospices, with a shift in emphasis taking place from the spiritual, emotional and social care of dying patients to a concentration upon their physical symptoms (James 1986, 1994; see also Johnson et al. 1990; Wilkes 1993: 2; Abel 1986). Neale has expressed similar concern about the impact of current auditing procedures which, she suggests, 'may not be sensitive enough to measure the intangible, informal qualities of care so valued in early hospices' (1993: 60). As Walter has likewise argued, 'it is easier to demonstrate effective pain control, high bed occupancy and financial cost per patient than to demonstrate real attentiveness to patients' wishes' (1994: 167).21The difficulties with which the movement now has to contend have been theorised by some writers through the use of fairly unreflexive gender stereotypes. It has been suggested, for instance, that hospice care developed as an essentially 'feminine' (Walter 1994: 169) and 'maternal' (Moller 1996: 60) response to the 'depersonalisation of male technological rationality' (Walter 1994: 71). Consequently, various problems are arising now that hospice services are being progressively drawn back into a 'masculine' framework; in this case, a framework characterised by the concerns of cost-effectiveness and cost-accountability (Hugman 1994).

The tensions occurring within the UK hospice movement can be found elsewhere: Torrens, for example, in his overview of the hospice movement in America, has argued that modern hospices now rest uncomfortably between 'two worlds' and two opposing views of 'reality'

- what he terms the 'emotional' and the 'economic' (1986: 6). Such diametrically opposed 'realities', as he further suggests, 'often pull hospice workers in entirely different directions' (ibid.). Nevertheless, the specific nature of the UK situation must be emphasised here; in particular, the relationship that now exists between the modern hospice movement and the NHS. As later chapters illustrate, an underlying and often irreconcilable conflict did appear to exist between the staff and the NHS management in both the day care service and the inpatient hospice where I conducted fieldwork. Whilst staff were anxious to provide their patients with ' a safe haven' and a ' surrogate family', their goals came into constant conflict with the managerial objective of 'processing patient case loads' as 'efficiently' and 'cost-effectively' as possible.22 Such a conflict is one of the recurrent themes that runs through the pages that follow.

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