The routinization of hospice: Charisma and bureaucratization

Sot. SC;. Med. Vol. 34. No. 12. pp. 136Sl375. Printed in Great Britain. All nghts reserved

0277.9536,92

1992

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Copyright C 1992 Pcrgamon Press Ltd

THE ROUTINIZATION OF HOSPICE: CHARISMA BUREAUCRATIZATION

AND

NI~KY JAMES’ and DAVID FIELDS ‘Department

of Nursing Studies, Medical School, Nottingham University, Nottingham NG7 2UH, U.K. and *Department of Community Health and Department of Sociology, Leicester University, Leicester LEI 7RH, U.K.

Abstract--In 25 years the number of hospices in Britain has multiplied from under 15 in 1965 to over 430 in 1991. During this period, often working out with the mainstream health system, the hospices actively sought to transform terminal care. More recently a process of diversification and legitimation has meant that hospices have become increasingly subject to mainstream influence. Using Weber’s concept of charisma we examine the development of the hospice movement during this period of expansion. We suggest there are a number of factors leading to the routinization of hospice care including the ways in which it was sponsored and developed at the local level, and pressures toward bureaucratization and professionalization. We make links with recent developments in the health services. Finally we consider whether it is possible for the hospice movement to sustain its founding ideals.

Key worcis-hospices,

charisma.

terminal

care, social movements,

1. INTRODUCTIOS But

there

is a crucial

sense in which the attempt to establish ‘communitas’ by casting off the corrupting fetters of orthodox institutions is doomed from the start.. communitas can have no existence independently of the structured society to which it is a response [I].

The hospice movement is unashamedly reformist. Since its modern inception, symbolised by Cicely Saunders and the opening of St Christopher’s Hospice in 1967, there has been a clear intention to use the best skills and resources from within the formal health care system and to work with that system. Nevertheless the reforms were fired by the radically disruptive intention of altering the tenor of British society’s care of the dying. The degree to which ‘the hospice movement’ succeeds in this aim is mitigated by the social context in which the changes are taking place. In this paper we attempt to trace the history of the modern hospice movement to the present, taking account of the inter-play between initially ‘separatist’ hospices and mainstream health services. In doing so we draw attention to internal hospice changes and to external influences from within the health services on the routinization of hospice. Charismatic movements can only be ‘successful’ if they resonate with tensions and ambiguities in the broader social context within which they arise, so in the first section we establish the ‘pre-conditions’ which set the context for the rise of the hospices. The second section is an analysis of the hospices in terms of a charismatic movement. Following the direction in which analysis of charismatic authority leads us the third section is an examination of the development of hospice in terms of routinization. Here we identify examples of Youtinization’ in the hospice movement and speculate

health

organization

on their effects. The fourth section marks the stillcontinuing period during which the hospice movement can be deemed to be re-entering the mainstream health system in Britain. In the final section we speculate about the continuity of the initial ‘founding mission’ and sense of purpose of the hospice movement.

2. PRIGCONDITIONS

FOR THE HOSPICE

MOVEMENT

In 1960 in Britain and Eire there were a few long-established Catholic hospices, IO Marie Curie homes and 19 beds allocated for terminal care at the Royal Cancer Hospital, London. Though the opening of St Christopher’s Hospice in Sydenham, London, in 1967 is the symbolic reference of the ‘start’ of the modern hospice movement, the period of greatest hospice growth was in the late 1970’s and particularly the 1980’s. By 1980 the number of hospice services had only increased to 62 services, but by 1991 the number had increased to 430 [2]. The opening of St Christopher’s Hospice and the increasing pace of development and acceptance of hospices arose from a series of factors which had cumulatively led to an active search for ‘an alternative way of dying’. We mention the factors briefly here in order to set the context for the development of the hospice movement but this is not to say that at the time hospice pioneers were aware of all these factors. For example, Saunders has informed us that:

it was not so much the general social trends as the impact of listening

to individual patients which was my own initial impetus and certainly was so for many of the other hospice pioneers, For example, I did not read the reports by Townsend and Sheldon until after I was well on the way to

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J.AMES and

reading medicine in order to do something about the lack of pain control I had witnessed [3]. Demographic changes in Britain meant that by 1960 life expectancy had risen to 66.2 for men and 71.2 for women and death from infectious disease was almost wiped out. Instead the majority of deaths were from circulatory disease, respiratory disease and neoplasms, each of which is often associated with degenerative effects before an eventual outcome in death [4]. The cumulative effect of these changes was to make death in the under 65’s less common-under 2 in IO deaths in 1960 rather than 8 in IO in 1841. Where the ‘moment of death’ took place had become increasingly institutionalized and thereby removed from social view, so that in 1965, just before St Christopher’s Hospice opened, 62% of deaths occurred in hospitals and the numbers were continuing to rise. However, despite the moment of death being in hospital the majority of terminal care took place in the home. As a 1969 national survey highlighted all but 9% of their retrospective study of ‘life before death’ spent some of their last year at home and one in 7 had been living alone [5]. Undoubtedly public knowledge and expectation of death was shaped by personal experience. In effect, the circumstances surrounding dying and death during the 1960’s were principally of an aging population, affected by chronic rather than acute health problems and usually living at home, although the moment of death increasingly took place at an institution. These developments in turn placed increasing pressure on unpaid, or informal, carers [6]. Alongside the changing demographic patterns, post-second World War public attitudes and expectations of health care altered. influencing and influenced by the introduction of the enormously popular National Health Service [7]. Health care increasingly came to be viewed as a matter of right rather than being based on ability to pay. and demands on the service increased. With the revolution brought about by the availability of antibiotics and life saving surgery it sometimes seemed that medicine could ‘cure all evils’. Other factors contributing to rising expectations were the improving standards of living and affluence of the 1960’s. memorably summarized by the British Conservative’s election phrase “You’ve never had it so good”. Medicine itself changed too. We have already noted the presumed widespread efficacy of medicine in curing the nations ills. Central to this was the development and investment in modern hospitals vvhich became centres not only for the delivery of health care, but for biomedical research and hi-technology interventions. Within hospitals the ‘medical model’ increasingly implied physical testing and interventions with a narrow focus upon the disease rather than the person who was ill. However.

D,+vto

FIELD

contrary influences were also at work. Within the wider society the process which Illich [8] and Zola [9] describe as ‘medicalization’ occurred. For the first time psychology became accepted as a legitimate part of health research [IO]. Arney and Bergen suggest that medical expansion meant that ‘well’ people became a target of health interventions in addition to the ill and that: medicine of human Information [I I. p. 161.

would expand over the length and activity. collecting. analysing and as any good management team

breadth routing should

They argue that the ‘subjective individual’ increasingly replaced a physical case as the object of attention. Pain “gained socio-emotional dimension around the Second World War and became central to medical inquiry” [I I. p. 121 facilitating moves to integrate ‘support’ with ‘cure’, and ‘compassion’ with assessment. The change of medical approach in turn led to debates about the organisational forms service provision should take. Arney and Bergen refer to “an integrated organization consisting of the health care team and support group networks” [I I. p. 131. The idea of opening up ‘networks’ and of a ‘team’ aiming to ‘individuate the whole person’ by giving ‘total care’ find such resonance in the hospice rhetoric that they could have been written for it [12]. The technical achievements of medicine while bringing hope to some were tinged with ambivalence and fear for many. The sophistication of medical equipment meant that cessation of respirations and heartbeat were only used as a measure of death for those not expected, or not wanted to live [l3]. The emphasis moved from death as defined by cardio-pulmonary death to brainstem death partially to meet the needs of transplant surgeons and help decisions of when to ‘pull the plug’ [14]. This ability of doctors to keep people alive, as well as choosing when to let people die, generated fear of dying as well as hope for the living [ 151 and the developments caused deep moral and ethical concern to a wide variety of people [14. 161. In some of the American states it was these medico-technical breakthroughs which gave impetus to legislation supporting ‘the living will’ [l7]. While similar changes were taking place in Britain. disturbing evidence had emerged of poor quality care for the elderly and for cancer patients. In 1952 a nationwide survey of “patients with cancer being nursed at home” was carried out by the Marie Curie Foundation [l8]. It “provided a moving-often heart-breaking-picture of the life of a cancer patient at that time” [IS, p. 41, with 70% of the sufferers over 60. Many sufferers lived on their own. or with equally old or infirm relatives, often in appalling housing conditions and often short of the right sort of food, warm clothing and bedding [18. p. 41. Reports

lighted

by Townsend the inadequate

[I91 and

Sheldon [20] highimpersonal care. Sheldon’s

The routinization 1961 report to the Birmingham Regional Hospital Board on its geriatric services using such phrases as ‘human warehouses’ and ‘storage space for patients’. The, literally, ‘fear-full’ conditions for some of the elderly and dying and those with cancer became a social focus of concern as TB had in 19th century Britain. While the hospice movement was one response to the poverty of terminal care an alternative solution was offered by the British Voluntary Euthanasia Movement (VES). The growing support for VES during the 1960’s, 1970’s and 1980’s can be seen as a measure of the genera1 anxiety about the provision of care for the dying. A survey of reasons for joining the Voluntary Euthanasia Movement [2l] showed that it was the personal experience of “having witnessed the illness, senility or painful death of a relative or friend” that caused people to want to “control myself in the circumstances of my own death”. Both VES and hospices were fundamentally concerned about ensuring death with dignity. The VES solution was to extend the individual’s control over their own death, whereas the hospice solution was to develop a community response which obviated the need for euthanasia [22, 121. Hospice advocates have long debated with euthanasia advocates on both sides of the Atlantic and for some hospice supporters the growing strength of the euthanasia supporters was an added impetus to hospice growth [23]. Though it is difficult to assess the relative effects of these factors in terms of their influence on the early development of hospices, the experience of apparently intractable pain, fear of dying and of talking about dying, and the growing prominence of cancer were part of a public mood of anxiety about death with which the aspirations of the hospices resonated. In intriguing tension it seems that as the ‘medicalization’ of society continued doctors’ power to make decisions on our behalf came to be questioned. An example of this is the ‘disclosure’ debate on cancer where the question of patients rights to be fully informed about their diagnosis and contribute to decisions about their treatment were aired [24,25]. In analogy with educational developments during the 1960’s and 1970’s of ‘free-schools’ [I], people became receptive to alternatives to mainstream health provision for care of the dying. Within terminal care the vision hospices offered became the main alternative to mainstream services for one highly visible and problematic category: those dying from cancer. It could be said that cancer epitomized the nation’s fears of death, striking at random the young and the old, requiring radical and sometimes disfiguring surgery and drug treatments, causing apparently intractable pain, and all in a disease which people were unwilling to talk about, let alone acknowledge as requiring specialist support in the terminal phases.

of hospice 3. HOSPICES

1365 AS A CH.ARISMATIC >lOVE>lE>T

In Weber’s view, history alternates between charisma and routinization through bureaucracy, but with charisma representing an ever recurrent phenomenon [26]. Weber’s view of charismatic leadership focuses attention on the possibility for exceptional individuals to act as a catalyst for social change. It is a recognition of the impact of personality in bringing about change, even though, as Weber points out, as an explanation on its own it is insufficient. Weber sees in ‘charisma’ an agency which produces radical innovation in institutions and established beliefs. Inherently unstable, charismatic leadership is one which has no organized ‘machine’ at its disposal and whose power has not been gained through institutional procedure [27]. It is a uniquely personal response to crisis and ‘inhuman’ experience [26]. Essentially creative and disruptive, it promotes a new ‘value-orientation’ that inevitably collides with the existing one [28]. The charismatic leader who seeks to acquire possessions receives them in the form of donations, endowments or contributions [26], themselves uncontrollable, irregular sources of income. All of these characteristics, the personal commitment, disruption, lack of and then creation of structure, can be seen in the early development of the hospice movement as Du Boulay’s biography of Cicely Saunders illustrates [29]. According to Weber, leadership can remain charismatic only so long as the number of followers is small, that is to say at the very beginning of a successful movement. When exposed to everyday demands charismatic movements inevitably become confronted with the need to create an administrative machine; the acquistion of funds; and the problems of successions-and so the process of routinization begins. Weber, quoted in Bendix [26] wrote: It is the fate of charisma, whenever it comes into the permanent institutions of a community to give way to powers of tradition and of rational socialisation. This waning of charisma generally indicates the diminishing importance of individual action. [26. p. 3261. Bendix also notes that status and office are increasingly influential as bureaucracy increases. This theoretical framework of charismatic leadership moving toward routinization provides a useful way of understanding the development of the hospice movement. The early development

of modern

hospice

Analytically we can identify 4 key elements of charisma relevant to the early development of the hospice movement: the role of Cicely Saunders as a highly visible leader; the spiritual ‘calling’ which inspired many to become involved with hospices; the hospice vision of terminal care with its narrowness of focus; and the oppositional stance of the movement to mainstream terminal care. We shall consider each of these elements in turn.

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JAMES

1. The role of Cicel,v Saunders. Descriptions of Cicely Saunders indicate that she can be described as the type of ‘charismatic leader’ Weber describes as able to challenge and alter ‘value-orientations’. Saunders has been referred to as the leader of the modern hospice movement [30,31], as the “Mother Superior of the Hospice Movement” by Prince Charles [32] and a ‘pioneer’ by Hillier [33]. Her biographer, Shirley Du Boulay [29] describes the: combination of her personal gifts, hard work indefinable workings of destiny [?9, p. 731.

and

the

With some form of care of the dying in her mind for 20 years before St Christopher’s opened, Saunders relied on religious guidance and the support of others to help develop her ideas, which evolved into a foundation which is both religious and medical-a balance which du Boulay describes as being traditionally at odds. In generating spiritual, medical and organisational support for her vision of a ‘home’, Saunders’ began the process of accumulating the human and financial resources necessary to achieve her ‘religious ideal’ (29, p. 1551. In doing so she also became a highly visible leader of the hospice movement with personal and media appearances and publications to support and encourage the foundation of St Christopher’s Hospice. Since charismatic leadership is inherently unstable there is a need to be successful in generating and sustaining support [34]. Saunders, through St Christopher’s Hospice, has had the impact which has ensured success and thereby survival:

Its impact on the care of the dying has been dramatic in terms of the number of patients nurses inspired [33. p. 3221.

helped and of doctors

both and

The authority and impact of charismatic leaders depends on followers’ belief and interest in the leader and the mission. While extensive support begins the process of transition from reformation to tradition, without it a movement cannot survive. 2. Spiri/zcal ‘calling’. Weber’s analysis of charisma, part of a broader analysis of authority, derived from his study of comparative religion and sources of spiritual authority-a source which has also been important to the hospices. The term ‘hospice’ was deliberately chosen and adopted by institutions caring for the terminally ill both to evoke the medieval way-station for spiritual travellers and to differentiate them from ordinary hospitals [35]. Thus the terminology of ‘hospice’ is itself an indication of the spiritual underpinning of the movement-an underpinning reinforced at some hospice conferences by prayers at the start of proceedings. Reports from overseas hospices also indirectly indicate the significance of organised religion, and Christianity in particular, in giving impetus to the hospices [36]. The strength and support of Saunders’ Christianity is well documented both in her own writing and in interviews with others [29, 371 but, of course this does

and

DAVID

FIELD

not follow for all hospice staff. Saunders St Christopher’s Hospice:

observed

of

We are not all Christians here. by any means, but our work is done in obedience to the Christian imperative. For me personally, it could not be done otherwise [38, p. 741. Du Boulay [29] noted that what distinguishes the religious climate at St Christopher’s is the “extent to which all the staff, at least potentially, are involved in the spiritual care of the patient” [29, p. 1621. Other British hospice leaders whose effect has been considerable include Wilkes, Doyle and Cassidy-the last 2 of whom in their published accounts convey not just personal strength but strong spiritual elements [39,40]. Like Saunders they have been noted for the enthusiasm they engender in followers, and their power to stimulate change, while admitting their immense personal capacity for single-minded spiritual devotion to what they are doing. The general awareness of spiritual issues and the overt recognition of the spiritual needs of patients, families, and paid and unpaid hospice staff has had considerable impact in practical and organizational terms. Though the spiritual element was by no means confined to formal Christianity, this ‘religious’ identification meant there was a ready audience for the hospice vision [l2], and in some areas it was the clergy who were part of initiating hospice services. Often, too. they brought not only their perspectives on the spiritual needs of the dying and the bereaved but also made vital contributions through their access to the organization of formal religion and practical fund-raising skills. A glance at the 1991 Directory of Hospice Services shows nearly 60 hospices named after saints. While the systematic work on the role of religion in the spread of hospices has yet to be done the indications are that religion has been fundamental to the genesis and spread of modern hospice ideals. 3. Narrorr focus of hospice. Much has been written about the hospices and their work, with particular emphasis on the practical and theoretical commitment to holistic care, defined as physical, psychological, social and spiritual care. Though hospice services have come to include home care, day care, education and specialist advisers as well as in-patient units, the twin core of holistic care and teamwork are reflected throughout [30,38,41-501. But though the philosophy is general, the targets have been relatively specific with a concentration on people dying of cancer. For some people, hospices have become synonymous with ‘dying of cancer’. We suggested earlier that the focus on cancer was part of the resonance that the ideals of the hospice movement generated with the public. This also allowed those involved in hospice care, to concentrate their efforts in a well defined area, particularly in the control of physical symptoms. Although concern about this narrowness of focus has long been expressed by those within the hospice movement [12, 33, 51, 521 in organizational terms this specific focus upon cancer

The routinization of hospice patients could be seen as a strength rather than a weakness, encouraging the development of highly specialized skills, techniques and even technology and helping to generate the success so vital to the continuity of hospices. 4. Oppositional stance. Hedley Taylor in an analysis of the “the hospice movement in Britain; its role and its future” [53] pointed out how important itwas that the modern hospices developed outside the NHS because this enabled them to develop their own models of care. Saunders herself said that they moved out of the NHS “so that attitudes and knowledge could move back in” [53, p. 41. Implicit in Saunders’ specialism in the care of the dying and in the development of St Christopher’s was the criticism that the care of the dying was not being adequately managed. Explicit in the specialization was that a new model be developed, and the ideas spread through education, so that the dying could be cared for more effectively. Indeed it is claimed that the education and research functions of St Christopher’s are part of what made it unique as a hospice and thereby marked the start of the ‘modern’ hospice movement [38]. The implicit criticism and the efforts to change the care of the dying fit in with Weber’s view that ‘charismatic leaders’ are creative and disruptive. Both the disruption and implied criticism are points which hospices have to address each time a new service is proposed [3]. As early as 1967 St Christopher’s had a grant from the then Ministry of Health to run a Home Care Service, though the Service did not open until 1969, the same year as the Out-Patients Department was initiated [54]. Innovation was thus not in the forms of the hospice services which were relatively traditional, but in their philosophy and internal organization. From its ‘separatist’, innovative base outwith mainstream health services the idea of ‘hospice’ was so appealing that by 1976 a ‘movement’ is observable. An article in the Nursing Times in 1976 noted that: The growth of what has become known as the ‘hospice movement’ now shows about 20 homes for terminal care throughout the U.K., and a dozen Marie Curie homes [55].

summarize, St Christopher’s and other early hospices worked with a singleness of vision, an intensity of purpose and a narrowness of focus. Though unusual for health services, these elements, together with an element of ‘spirituality’ among leaders and the resonance with public attitudes meant the development of the hospices could thrive. To

Spread of the hospices: discipleship and sponsorship We have suggested that the ‘vision’ or mission of the early hospices resonated with public concern about the care of the dying. There is no doubt that its appeal was to individual’s personal beliefs and experience [ 121, but as the ideals and ideas spread, the initial ad hoc, ‘separatist’ development generated organizational support on a national level which

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assisted with the dissemination and legitimation of the principles. This development is a measure of the hospices’ success in disseminating their vision of good terminal care. The challenge confronting hospices then became how to continue to ‘spread the word’. One of the characteristics of charismatic movements is the unplannable co-option of disciples and followers who are vital in the spread of the movement but whose understanding and implementation of early ideas is unpredictable and will necessarily be adapted to their own circumstances. This is clearly the case in the spread of the hospice movement. While it was vital that the early hospices attracted ‘disciples’ who felt called to take the message out to their own communities and to act as leaders, this also meant an inevitable adaptation and dilution of the original ideals. In many instances the ‘disciples’ were highly committed individuals who had visited or heard of St Christopher’s or the idea of hospices, and were inspired to set up their own planning group to build their own hospice. The types of ‘disciple’ were diverse. Some had ‘charisma’ in their own local community; others, though fired by enthusiasm were convincing through their persistence and planning; and still others were people who identified the hospices as a good career opportunity. ‘Local’ hospice leaders, while drawing on already existing models of hospices, also needed to generate their own supporters in the local community-an effect that caused the huge increase in in-patient units long after the Wilkes report [51] had suggested they be limited. While there are still some ‘disciples’ who come to the ‘vision’ as if it were new and are still intent on building their ‘own hospice’, others have adapted the initial ideals and transposed them to suit their own organizations and traditions. An example of the cumulative effect of such transposition is how ‘eu-thanatos’, the early hospice aim of ‘a good death’ gradually came to be interpreted by some hospice workers as ‘death with dignity’, and more recently, by some, as ‘a peaceful death’. In this we see a shift in the thinking of those involved in hospice care from a broad concept of ‘good’ to a prescribed type of death, that is ‘peaceful’. Another example of change in terminology reflecting broader change is the shift from ‘terminal care’, the subject of early hospice articles [55, 561. to the more authoritative ‘palliative medicine’, a sub-speciality created by the Royal College of Physicians in 1987. This change removes the open reference to death for which the early hospices were renowned. A weakly drawn but key aspect of the ‘charismatic model’ is the relationship between the ‘new’ model and existing but non-mainstream systems. In part the spread of hospices ideals was the result of individual and community actions, but these groups benefited from the assistance of the growing number of national voluntary organizations. Particularly relevant was (and continues to be) the influence of the Cancer Relief Macmillan Fund (part of the NSCR, National Society for Cancer Relief, also known in the

NICKY

1365

JAM=

past as Cancer Relief) and the Marie Curie Memorial Foundation. Cancer Relief soon made connections with St Christopher’s and had a major national impact on the dissemination of hospice services, educational inputs, appointment of staff and development of career paths. Indeed, looking at the development of palliative care (Appendix), it could be said that cancer charities, principally Cancer Relief Macmillan Fund, with the Marie Curie Foundation a lesser influence, have been a key factor in shaping the hospice movement. The hospice movement, like all charismatic movements which are to survive, has had to adapt to changing circumstances and because of the need for followers and the movement’s need for stability, has become increasingly routinized. Evidence which suggests that such routinization has taken place can be observed in the ways diversification and legitimation of the hospice movement have taken place, the spread of career paths, and its increasingly close co-operation with mainstream health services-issues to which we now turn. 4. THE PRESENT

STATE OF THE HOSPICE

MOVEMENT

and

DAVID FIELD

practitioners, specialists and volunteers, to a fully informed patient, using the full range of medical knowledge and appropriate technology and delivered in a caring and holistic manner to take account of the patient’s physical, psychological, spiritual and social needs. The hospices have pioneered not only the re-placing of the patient at the centre of care, but also the necessary organizational changes which must accompany such a re-orientation. These achievements result in part from the single mindedness which the hospice movement has shown in its pursuit of the goal of providing pain free holistic care for dying cancer patients. In addition, research in hospices on the control of pain and other symptoms has provided an influential body of knowledge on which other terminal and palliative care practitioners draw [54]. An intensity of mission has allowed hospices to focus their endeavours upon a clearly defined and relatively limited set of problems to good effect. There are a number of challenges for the hospice movement as it becomes increasingly absorbed within mainstream health systems. We will look in particular at issues of bureaucratization; the reprofessionalization of terminal care; evaluation and audit; and the financing

In the previous section we have suggested that the people involved with hospices and the organizations which supported this now national system, necessarily adapted the early ‘model’ and ideals to new circumstances. In Britain hospice care is now an important part of the services provided to terminally ill people and their close intimates in terms of the provision of domiciliary care, out-patient clinics, day care and in-patient care; in terms of the education and training of health care personnel in terminal and palliative care; in terms of the wide impact hospice research has had on pain relief and in terms of the ideology of care which underpins these activities. Having originated outside the health care establishment as a critic of standards and practices of terminal care within NHS hospitals and elsewhere, the hospice movement has now become part of the mainstream of health care provision, as an exemplar of good practice in terminal care, and an influential player in policy making. This entry into the ‘mainstream’ has been significant, but not without its cost and problems for the hospice movement. One achievement of the hospice movement has been to provide demonstration models of how good terminal care can be delivered. In particular hospices have shown that cancer symptoms, and especially pain, can largely be controlled without negative side-effects. They have also demonstrated that it is possible to communicate and discuss terminal prognoses with those who are dying to the benefit of ‘patient’, relatives and staff. At the level of patient care hospice ideas encapsulate what many observers regard as the ideal form of care for sick people-individually tailored treatments and support provided in the place of patient/family choice, by a team of

and resourcing

of hospice

care.

Bureaucratization With routinization comes bureaucracy. As the hospices attempted to regularize and stabilize their day to day functioning they became increasingly bureaucratized. The speed and extent of bureaucratization varies at national and local levels, though the still growing numbers of hospice units implies that the influence of local, ‘charismatic’ founders is still effective. Andreski [27] identifies the following features of bureaucracy, all of which can be found in hospices: I. the strict division of spheres of authority determined by general rules, laws and regulations 2. hierarchy of offices and the channelling of communication through proper hierarchical channels (i.e. strict division of labour) 3. the work of the official requires training 4. separation of official activities from private affairs 5. duties are discharged in accordance with rules. 1. Spheres of authority. The early hospices were innovative in both their organization and their care because there were no rules to follow, no established authorities or organizations to set standards. This is no longer the case. In 25 years the authority of the hospices have undergone the transition from being charismatically led to a mixture of traditional and legal-rational authority, although locally the organization of a new hospice may still be charismatically driven, at least in part. The national pressure group Help the Hospices (which has done important work in seeking funding and support for the hospices) issued papers in 1990 on “Hospice caredefinitions and qualifications” with the appendix on “Good

The routinization Standards and Practice” and in 1991 disseminated information on the formation of the “National Hospice Council for Specialist Palliative Care Services” In this paper it was noted that reassurances would be sought from the Minister of Health that “the National Hospice Council would be accepted by the government as the authentic voice of the hospice movement”. At the national level, in 1991 a new authority is being established with the development of the National Hospice Council from a wide range of interested groups. The Council ‘group’ proposed that they set the standards and definitions of hospice, and that central Government should look to them for advice on the matter. The full consequences of this development have yet to emerge. However, there is already an example of how such authority might be exerted. In 1987 central government required Regional Health Authorities to submit their regional plans for terminal care services. Subsequently, in 1990, Help the Hospices, a member of the NHC, urged Regions to fund hospices within their region only if they were part of the Regional plan for terminal care as a means of enforcing standards and controlling the development of new hospices. 2. Hierarchy. Several research reports have noted how difficult it is to identify models of hospices from which to make comparisons [57-591. The early hospices deliberately blurred or altered traditional patterns of hierarchy and there are still different patterns of authority between each hospice. Some have been doctor led, some nurse led (with no doctors), and some led by an ‘egalitarian’ group of nurse, doctor and social worker. Some medical directors have suggested that nursing care in hospices is more important than the medical contributions [60,61]. One effect of such an emphasis has been that in some units, and in some community teams, nurses have worked as a slightly adapted form of ‘nurse practictioner’-that is nurses who are able to diagnose and prescribe from a limited list of drugs. While the name ‘nurse-practitioner’ has never been fully embraced partly because of its legal and political sensitivity, some nurses visit and assess patients and tell doctors who have not seen the patient what drugs to prescribe, asking them to sign a ready written up prescription, or asking them for telephone permission to give a drug. In most circumstances the system has been informal and based on locally developed inter-disciplinary knowledge, experience and trust. This system could be formalized, or an alternative is a move back to more traditional work allocation, as suggested by the following recommendation about in-patient units from Help the Hospices in 1990:

All patients should be under the constant clinical supervision of a doctor, and not receive medical care only at the discretion of the senior nurse at the time. Medical staff should be on call at all times and should have experience of palliative medicine [62].

of hospice

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Not only is this recommendation an indication of a move toward clearer job demarcation it also runs counter to the earlier emphasis on the blurring of the division of labour and accountability. 3. Training. The emerging division of labour replicating traditional models of health care provision, has had an effect on the demands and requirements for training of hospice staff. It has caused training to emerge on traditional divisional lines with a diploma in palliative medicine for doctors starting in 1990 and long-standing basic and advanced courses in terminal care for nurses. While these serve the important function of dissemination of palliative care skills into the mainstream, they also reinforce mainstream divisions within the hospices. The training of volunteers, the specialist functions and training for hospice workers, conferences specifically for hospice administrators and for chaplains, all attest to a move away from the ‘generalist’ hospice worker toward the specialization of staff in different aspects of ‘holistic’ care. A range of these specialist workers can be noted from the Directory of Hospice Services [2]. 4. Separation of oficial duties. It is harder to demonstrate the move towards the separation of official activities from private affairs, and undoubtedly there are still paid and unpaid hospice workers who are ‘called’ to hospice work and for whom hospice activities are the central feature of their lives. Equally there are people who do not share this all encompassing approach. The early hospice workers worked long hours, both through commitment and lack of choice since there was no-one to cover if they were not there. While there has always been recognition that people have and need their own lives outside ‘their hospice’, hours of work and ‘cover’ are increasingly regularized as hospices and health authorities recognize sources of stress arising from overly long hours [63,64]. Another factor here has been a change in the pattern of recruitment and utilization of paid staff. Paid staff are entering hospices as part of career development as well as because of their general commitment to a particular quality of care, rather than with the driving conviction of the early staff who felt ‘called’ by the need to change the care of the dying. Given the success of the hospices in achieving this initial mission there is less obvious need to work long hours and to ask their families to make commensurate sacrifices. 5. Rules. In view of all the above and also as a result of the factors which we discuss below, it seems likely that the hospices, which were so effective in the early days at breaking the ‘informal’ rules of care will become more ‘bureaucratic’ and rule-bound. Indeed they are already taking a key role in setting and enforcing rules governing patient care in association with professional bodies and umbrella organizations such as National Hospice Council, Help the Hospices and Cancer Relief Macmillan Fund.

NICKY JAMESand

1370 The reprofessionakation

of hospice

care?

One of the consequences of the hospice movement ‘rejoining’ the mainstream of the health services is growing assertion of the dialectical process by which hospices both influence the mainstream and in turn are influenced by them. The early hospices left the mainstream specifically to escape the forces which mitigated against developing the ‘model’ of care to which the early advocates aspired. Unless the mainstream has changed considerably these ‘forces’ hold the potential for subverting the original hospice ideals as the traditional bio-medical emphasis on physical interventions and professional dominance reassert themselves [65, 661. It is likely that changes in the type of care and the organizational processes through which the care is delivered will be gradual and cumulative, while never reverting to pre-hospice norms. Further, as hospice organization has diversified to accommodate the varieties of service on offer, it is likely that such ‘adaptations’ will have differential effects. One of the bases of the hospice movement has been its commitment to research [3, 541. Such research underpinned its teaching role and has played a significant part in the development of palliative medicine. This is an example of the changing reciprocal influence of hospice and mainstream medicine on each other, for the deliberate development of palliative medicine as a sub-speciality represents one way in which the mainstream system will exert its influence within hospices in the future. As Hillier wrote in the BMJ: More full time medical directors and consultants of high calibre will coordinate district terminal care services and improve undergraduate and postgraduate education.. These activities will raise the status of part time palliative care physicians as they develop a full range of services and participate in education and research [67].

Given the bio-medical emphasis of the mainstream it will be interesting to see which categories of ‘care’ receive most attention. Research findings on physical interventions for hospice patients offer mixed findings. Seale, in a retrospective study, notes that ‘in-patient’ hospice care involved fewer medical interventions’ than ‘conventional care’ [68]. However, a national study suggests that: more use is made of invasive procedures and that patients are more likely to be referred for palliative surgery and organ donation in hospices where there is a full time consultant or medical director.. Following the Royal College of Physicians recognition of palliative medicine as a new speciality it is likely that these differences will increase with the advent of a generation of ‘accredited hospice consultants’ who will displace the ‘enthusiastic amateurs’ of the past (58, p. 793).

Only as the research necessary for career advancement in palliative medicine within the Royal College of Physicians develops over time will we see whether priority is indeed given to the ‘physical’ over the aspirations of ‘total care’.

DAVID FIELD

A further example of where the ‘reprofessionalizing’ effects from the old system may be asserting themselves is in community care. Through the work of the now over 800 Macmillan nurses, domiciliary palliative care has been improved, enabling greater numbers of terminally ill people to stay at home. Nevertheless, the organization for the delivery of primary care has not changed much. There are still major difficulties with the relationship between MacMillan nurses and other primary care practitioners [3, 591, and the ‘primary care team’ is often thought to be a ‘team’ in name rather than practice. Yet good communication and shared commitment to supporting the patient and families decisions was crucial to early hospice ideals. Undoubtedly it is only the success of the hospices in making its services so highly regarded that means that ‘adaptations’ become visible. Nevertheless where parts of the ‘ideals’ are taken on without others, there may well be a diminution in their potential effectiveness on a broader basis. While there are no clear conclusions to be drawn on ‘changes’, or ‘compromises”, or ‘adaptations’ to accommodate ‘mainstream’ care at the expense of hospice ideals, there are indications of increasing routinization. For many this change will be a the anarchic welcome means of controlling proliferation of hospices in the 1980’s. ELlaluation and audit of hospice

care

The core of hospice services is the provision of good quality ‘total care’ which takes account of the emotional, physical, social and spiritual needs of the patients and their families and intimate friends. Having said that, we must also recognize that many hospice type services are domiciliary based and work with established involve complementary primary care teams, most of whom will not be specialists in terminal care [l2]. While this raises a whole range of questions about ‘audit’ and evaluation of terminal care in the community, we will confine our comments here to in-patient units. The rise of audit, both clinical and financial, may pose a threat to hospice ideals of care. Audit is an indirect source of pressure on hospice funding from local NHS organizations. More directly, the general pressures within the health services to measure service provision for both quality and cost-effectiveness have also been felt within the hospice movement. Standards and the evaluation of hospice services are being discussed with some urgency at national, regional and local levels, with the Government announcing support for research into hospice standards in 1990. The difficulties of defining and measuring the quality of inputs such as ‘effective communication’ and ‘empathy’ and outcomes such as ‘feelings’, ‘ satisfaction’ and ‘well-being’ are immense [68]. Yet it is these inputs and outcomes which lie at the centre of hospice care ideals. Will the pressure of audit lead to a diversion of interest away from such

The routinization

‘soft’ factors towards the more easily defined and measured ‘harder’ indicators of treatment and ‘output’ such as drugs used, physical interventions made and bed throughput? We note for instance that many hospices follow the tradition of leaving a bed empty for 24 hr after someone has died in recognition of their place in the hospice. With increasing emphasis on bed occupancy, hospices will have to_ ensure special clauses in their contracts so that they are not penalized for such an essentially ‘caring’ activity, or else as a society we will have to recognize that it is a ‘frill’ we do not choose to afford. Audit, whether it is medical or clinical, will be required by central government and local health authorities to justify the funding of hospice care. Yet measures mentioned above are not central to the concerns of hospice with quality of remaining life, patient autonomy, and informed choice of treatment. While not denying the legitimacy of holding hospice services accountable for their care, our concern is that the imposition of crude measures of quality and cost-effectiveness may damage and subvert hospice practice and reinforce the possible tendency towards the primacy of physical care over other aspects of care. This has occurred in the United States as the result of the accreditations system there [69, 701. As a counter to that effect we note that while the results of a study by Hill and Oliver [7l] clearly suggest that the economic optimum of in-patient bed provision is from 20-29 beds, most of the proposed new in-patient units listed in the 1991 Hospice Directory are for 10 beds [2, 721. This suggests the continuing importance of autonomous local support responding to perceived local needs and conditions in the establishment of new hospices. Clark’s account of attempts to set up hospice care in Newark gives a good example of the various factors involved at the local level [3]. Financing

and resourcing

hospice

care

The potential problems surrounding the funding and resourcing of present day hospices partly flow from the very success of the movement in establishing itself as an important part of terminal care provision in so many localities. Funding problems have local effect though a national pattern can be discerned. The modern hospice movement began in a period of relative affluence and prosperity in which its dependence on voluntary contributions and aid from institutions was relatively unproblematic. During the initial phase and subsequent surge of growth contributions from individuals were backed by substantial aid from national charities and by a range of forms of support from local groups, businesses and NHS authorities (e.g. donation of unused hospital land for siting a facility, free laundry services etc.). In the 1990’s financial support is harder to come by, and support from local health authorities has become correspondingly more important.

of hospice

1371

At the individual level, although hospices are successful charitable fund raisers [73], competition amongst charities for individual donations has increased and become more professional. Partly in response to such pressures fund raising within the hospice movement has become an important area of bureaucratic activity, with its own set of paid functionaries and volunteer workers. The necessity to continue to raise funds to support hospice services, and to compete effectively in recessionary times may lead to pressures in the ‘selling of hospice’ which are potentially subversive to hospice ideals. Indeed some fee-paying units use the name of ‘hospice’ though Help the Hospices will not accept them as being in the spirit of hospice. With the introduction of ‘contracting’ for health services and the ‘purchaser/ provider’ split in Britain in April 1991, hospices may find that they are having to adjust their services to those which are most saleable, such as the ‘Bricks and Mortar’ in-patient beds, rather than extending their domiciliary care [3]. An important source of support to the hospice movement, and especially to the provision of inpatient hospice care, has been that from local Health Authorities. There are a variety of forms of support such as ‘reserving’ a certain number of beds, doctors giving specialist consultations ‘free’ to hospices in the independent sector. Such support may have had a hidden price in that it may compromise hospice ideals and patterns of work. For example, the pattern of sharing nursing (and medical) staff between the local NHS hospital and in-patient hospice can compromise hospice ideals directly and indirectly [60]. Hospital managers will be under increasing pressure to leave vacancies and to justify the high staff patient ratio which hospices work with when their hospitals are limiting new appointments or reducing their staff levels. A more directly threatening consequence of the reliance of some hospices on substantial levels of continuing NHS support is looming. With the continuing pressure on NHS resources during the last decade it may be difficult to maintain such support from the NHS to the hospice movement, and certainly not in the relatively relaxed manner in which such support was allocated and costed. This is as true of community services as of in-patient services, where GP’s may have to chose to purchase ‘Macmillan’ nurses in addition to the visits already made by district nurses. 5. CONTINUITY OF PURPOSE AND MISSION

We have argued that one of the strengths of the hospice movement has been its specific focus upon the care of terminally-ill cancer patients. This has provided it with continuity of purpose and a sense of mission which has focused its activities upon the management of a delimited set of problems and issues-the provision of ‘total care’, honesty in communication, the provision of emotional support

1372

NICKY JAM= and DAVID FIELD

for all those concerned, and research-based pain control. We submit that it is the single-mindedness of thought and effort which has been crucial to the undoubted success of the hospice movement. The narrowness of the practical focus on cancer has been instrumental in the detailed working through of how best to manage ‘total pain’ in the terminally ill. Dealing with a disease where terminal prognosis can be known and where life expectancy may be estimated focused attention upon effective communication with patients and families. Caring for such patients in small numbers and with very favourable staffing levels allowed staff time to get to know their patients and to tailor both pain control and communication about prognosis to the needs and characteristics of those they were caring for. The ‘family’ ethos pervading hospices appears to have made for better staff support than elsewhere and demonstrated the possibility and desirability of open communication and patient involvement in the choices about their care [67]. The net effect is that the hospice movement now provides not only a set of principles for the care of the terminally ill, but also well founded techniques for the control of physical pain and practical examples of the provision of holistic care to informed patients. In its educational and training functions this fund of applied knowledge is transmitted to other settings of terminal care. In a number of ways, however, the singleness of purpose which sustained the early hospice movement is under threat. There is a danger of goal displacement, with the core goal of effective, humane care of dying people is in danger of being partially displaced by other activities which were initially subsidiary to this goal. We have already indicated the pressures from clinical/medical audit and the ‘reprofessionalization’ of hospice care upon the practice of holistic care-a displacement of focus and practice back towards more traditional medical conceptions of disease and its treatment, to the possible detriment of other ‘softer’ aspects of care. Other factors are the diversification of hospice care activities; the increasingly important role of educational activities; staffing changes which mean that second, third, fourth, fifth and sixth generation staff are unlikely to have the drive and commitment of the pioneer staff; and potential pressures to accept non-cancer patients. 1. Dicersification of services. The initial realization of hospice was in the form of purpose built in-patient institutions, but following the Wilkes report [51] there has been a dramatic increase in the number of day care and domiciliary care services [57]. However in-patient units have also continued to be built in great numbers. The provision of this range of services may lead to internal tensions and conflicts as hospice organisations attempt to resolve the competing demands for resources between different aspects of their terminal care provision. In any organization with multiple activities individuals from one area may

compete with those from other areas for resources and also for prestige, status and power, and the hospices would be truly exceptional to resist such effects. It could be further argued that the shift of hospice to such areas as home care. and hospital symptom control/support teams has softened the intensity of effect of specialist staff. Complementary’ hospice services necessarily interlink with mainstream services which have rarely changed their organization in the radical ways initially proposed by the hospices, Through these systems hospice-type support becomes available to more people. and enables them to have the choice of staying at home for longer. However the question is raised of whether to provide high quality services for a few people or to provide lesser services for greater numbers. 2. Educational acticiries. Education in terminal care is an area of hospice activity which has assumed increasing importance both as a goal in its own right and as a source of legitimation and influence for hospices. But while education and research were ‘key elements in marking out the ‘modern’ hospices from those already in existence, they have to be managed with enormous sensitivity. In particular there seems to be a danger of the ‘tail’ of education wagging the ‘dog’ of hospice care. A clear example of this tension is in community services when patients are asked if they mind an ‘extra’ visitor, a visiting nurse or doctor being trained at the hospice. The dynamics of the encounter are inevitably changed from the closeness of two people who are relatively familiar with each other to one where ‘a stranger’ is introduced. Of course, this education function and its challenges for care is true of other health service provision too, but it does raise a question as to when ‘personal’ attention is over-ridden by broader ‘community’ needs such as the increasingly regular requirement for appropriately ‘trained’ staff. 3. Staffing. The growth of the hospice movement may have been accompanied by a change in the composition of its membership, especially its paid staff. The original staffing of hospice services drew on a large number of staff who were fulfilling a ‘calling’ by working with terminally ill people in hospices. This sense of calling was one of the ‘engines’ driving the movement on to its current success, for without this dedicated band of highly motivated staff it is hard to see how the movement could have achieved what it has. However, as we have suggested, hospice work is now attracting a different type of staff who are entering the movement for employment or career purposes rather than because they are ‘called’. Where joint staffing arrangements with NHS institutions are in operation hospices are also likely to be part of a management structure which has little or no specific commitment to or understanding of the hospice ethos and principles. This adulteration of ‘true believers’ by careerists and those who *just need a job’, inevitably dilutes the intensity of commitment.

The routinization 4. Non-cancer patients. Another potential threat to the identity and practice of hospice care is the question of whether hospices should continue to focus primarily on cancer patients. From early on people suffering from a limited number of other diseases, particularly MND (motor neurone disease) and MS (multiple sclerosis) were admitted to hospices, but these still represent very few of the overall total. Ten years ago the narrowness of the focus on cancer was criticized within the hospice movement [X?] but little changed. However the advent of AIDS has raised this question forcefully. It has sharpened consideration of the ethics of excluding non-cancer patients. It has also highlighted the practical consequences of admitting long-stay terminally-ill patients into what has increasingly become a short stay in-patient hospice service.

6. CO?KLtiSION

The observations and queries we have raised in this paper are not, by themselves, sufficient to substantiate the claim that there has been increasing routinization and bureaucratization of the hospice movement as it is re-absorbed into the mainstream of British health care services. Yet we believe that such a process of routinization has occurred as a result of the cumulative effects and changes that we have discussed in the fourth section of this paper. In contrast to the initial ad hoc hospice developments, hospice practices and hospice staff are now publicly and professionally accountable in ways they were not before. In part these developments came from within the movement, but they are also part of the re-integration of hospice within the mainstream services. There is also a trend toward the re-medicalization of hospices as implied by the formal career based development of doctors specialising in palliative medicine and the traditional divisions of labour; the transpositions of terminology; and in some circumstance the predominance of physical over social, psychological and spiritual care. This is not to imply that the hospices have changed nothing, nor that they have been unsuccessful in achieving their initial goal of transforming terminal care provision. The process of social change has meant that the hospices affected and were affected by the structures of terminal care to which they were, and continue to be, a response. Max Weber examined this reciprocal process in his analysis of ‘charisma’ and ‘charismatic authority’ and suggested that routinization is a necessary and inevitable development in movements which

are

to survive

their

initial

charismatic

leader-

We have used Weber’s framework to provide insight into and understanding of the development of the modern hospice movement in Britain. ship.

Acknowledgements-Our thanks to Bronwen Biswas and Dame Cicely comments on the paper.

Ian Johnson Saunders for

and their

of hospice

1373 REFERENCES

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London, 1985. A., Hockey L. and Anderson J. Life Before Death. RKP, London, 1973. 6. Dailey G. fdeologies of Care. Macmillan, London, 1988. 7. Klein R. The Politics of the NHS. Longman, Harlow, 1983. 8. Ilich I. Limits to Medicine. Maryon Boyars, 1975. 9. Zola I. Medicine as an institution of social control: the medicalising of society. Social. Rev. 20, 487-504. IO. Rose H. and Rose S. Science and Society. Pelican, Harmondsworth, 1970. Il. Arney W. and Bergen B. The anomaly, the chronic patient and the play of medical power. Social. Hlth Illness 5, l-24. of the 12. James N. Vision and system: the maturing hospices. In Dearh Duries (Edited by Morgan D. and Lee R.). RKP, London. In Press. 13. Sudnow D. Passing On. Prentice Hall, Englewood Cliffs, N.J. 1967. 14. Veatch R. Death, Dying and the Biological Revolution. Yale University Press, New Haven, 1976. 15. Cohen B. D. Karen Ann Quinlan: Dying in an Age of Eternal Liti. Nash Publications. New York, 1976. 16. Glover J.- Causing Death and Saving Lives. Pelican, Harmondsworth, 1977. 17. Sackett W. Death with Dignity. Med. Opin. Rev. 5, 25-31, 1965. Foundation. Forty Years of 18. Marie Curie Memorial Caring, An Anniversary Publication, 1988. 19. Townsend P. The Lasf Refuge. RKP, London (1962). Regional 20. Sheldon J. H. Report to the Birmingham Hospital Board on its Geriatric Services, 1961. 21. Lam R. Who is concerned about the right to die with dignity? a postal survey of Exit members, report for the Institute for Social Studies in Medical Care, London, 1981. 22. Smith N. Some conflicts and anomolies in terminal care movements. In Current Trends in Gerontology (Edited by Taylor R. and Gilmore A.). Gower, Aldershot, 1982. R. and Owen G. Hospice in America. In 23. Fulton Hospice: The Living Ideas (Edited by Saunders C. et al.). Edward Arnold, London, 1981. 24. McIntosh J. Communication and Awareness on a Cancer Ward. Croom Helm, London, 1977. R. I Don’t Know What to Say: How to 25. Buckingham, Help and Support Someone who is Dying. Papermac, London, 1988. 1966. 26. Bendix R. Max Weber. Methuen, London, 27. Andreski S. Max Weber’s Insights and Errors. RKP. London, 1984. R. The Limits of Rationality. Allen and 28. Burbaker Unwin, London, 1984. 29. Du Boulay S. Cicely Saunders. Hodder and Stoughton, London, 1984. 30. DuBois P. The Hospice Way of Death. Human Sciences Press, New York, 1980. Profile on Cicely Saunders 12.9.88, 31. Time Magazine. pp. 74-75. Association of Health Administra32. NAHA (National tors) Conference, London, December addressed by HRH Prince Charles, 1985. In 33. Hillier R. Terminal care in the United Kingdom. Hospice Care (Edited by Corr C. and Corr D.). Faber and Faber, London, 1983.

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APPE;VDIX Development

of Palfiatke

Care

Developments in 1950’s and 1960’s (Saunders): -Hospice: clinical pharmacology; surveys and reports: palliative radiotherapy and oncology: pain clinics; home care; Tavistock work on loss; theology and death. l967-Opening of St Christopher’s Hospice-the first ‘modern’ hospice. l972-DHSS National Symposium on “Care of the Dying”. 1976First ESB “Care of the dying patient and their family” course (nursing). 1976-82-Opening of I2 Continuing Care Unitsjoint ventures between NSCR and Health Authorities. principles under-ISing and l979--“Assumptions standards for terminal care” drawn up b) International Work Group in Death, Dying and Bereavement (published in Nursing Times). 198@-Standing Medical Advisor) Committee on Terminal Care (Wilkes report)+discourages increase in in-patient hospices. -Lunt paper on distribution of hospice services. -1st International Conference on Terminal Care (representatives from 16 nations). -f2.5 allocated to expand hlacmillan nursing teams (community) nationwide. 1982-139 hospice services (in-patient, home care, symptom control teams). 198&Griffiths report on management in NHS Effect on hospices? -Help the Hospices established as pressure group. 1985-NAH.L\ (NatIonal Associa.tion of Health Administrators) conference on terminal care for 1200. addressed by Prince Charles-guidelinss published 1986. 1986Appointment of first Lecturer in Terminal Care Nursing at Kings College London, funded b! NSCR.

The routinization 1987-Palliative

Medicine,

a new journal

published

in

Britain. --SHO specializing in terminal care appointed at Dundee University, funded by NSCR. -DHSS and Welsh Office circular asking HAS to submit their plans for terminal care. -Royal College of Physicians grant palliative medicine sub-speciality status within General Medicine with the effect that terminal care is integrated into career development. -300 hospice projects in existence with charitable income of f30 million p.a. 1988-Appointment of first Regional Nurses coordinating continuing care funded by NSCR. -Appointment of Macmillan Clinical Reader in Palliative Care at Oxford University. -Michael Sobell House (Oxford) becomes WHO designated teaching centre for cancer pain control. 1989Xentral government give f400.000 used to help ‘ailing hospices’. Publication NHS White Paper

of hospice

1375

“Working for Patients”-? effect on hospices within purchaser-provider split. Also “Caring for People” (community). 199O-Government announcement of support for research in setting standards of Palliative Care. -Help the Hospices document “Hospice Caredefinitions and qualifications”. -1st Diploma in Palliative Medicine, University of Wales, College of Medicine, CarditT (NSCR grant). -800 Macmillan nurses in post (community). 1991430 hospice services in operation (159 in-patient; 321 home care; 151 day care; 140 hospitals with support teams)--many are voluntary. -Government announce f18 million to HAS for voluntary hospices. -National Hospice Council for Specialist Palliative Care Services agreed. Compiled by NICKY JAMFS