All change: cancer services in transition

S. MORRIS, BA, Research Associate, Institute for Health Research, Lancaster University, M. B. MCILLMURRAY,

FRCP Macmillan Consultant in Medical Oncology & Palliative Care, Royal Lancaster Infirmary, K. SOOTHILL, PHD,

Professor, Department of Applied Social Science, Lancaster University, F. LEDWITH, PHD, Senior Lecturer,

University College of St. Martins, Lancaster & C. THOMAS, PHD, Lecturer, Department of Applied Social Science,

Lancaster University, UK

MORRIS S., MCILLMURRAY M.B., SOOTHILL K., LEDWITH F. & THOMAS C. (1998) European Journal

of Cancer Care 7, 168±173

All change: cancer services in transition

The policy and health service background to this discussion are the radical changes in cancer services

currently underway in the wake of the Calman-Hine Report and the wider changes ushered in by the NHS

and Community Care Act 1990 (UK). Using the changing face of hospice care as the focus, the authors

explore some of the potential issues and dilemmas involved in providing supportive care for cancer

patients and their families. Three `themes', or areas of concern, are highlighted: links between services,

changing organizational factors, and increasing `medical imperialism'. Potential benefits and drawbacks

of the changing ethos and organizational structures are discussed. Interview data are used as `triggers' for

the presentation of the authors' own reflections on developments in the hospice and cancer services'

arenas. The paper draws on interview data collected in the pilot phase of a 3-year study on the psycho-

social needs of cancer patients and their informal carers in north-west England. Twenty-nine interviews

were conducted with a range of professionals involved in the provision of cancer services in Lancaster and

Kendal. In the spirit of `gathering thoughts' and facilitating debate, a commentary on developments in the

hospice sector is offered rather than any firm conclusion.

Keywords: cancer services, delivery of health care, hospice, palliative care, supportive care.

INTRODUCTION

People have become accustomed to government reports

being commissioned to off-set a crisis and being quietly

buried when the focus has moved elsewhere. However,

with cancer services the situation is different. The recent

report by the Expert Advisory Group on Cancer, the

Calman-Hine Report (Department of Health 1995), is a

response to concerns about the variable patterns of care

and the disappointing death rates for particular cancers ±

notably cancer of the female breast ± in comparison with

other countries. It has already stimulated changes in the

organization and provision of cancer services across the

UK. Essentially, the report sets out a number of general

principles which include: the need for an integrated

service encompassing primary care, cancer units and

cancer centres; the provision of care as close to the

patients' home as possible; and a commitment to `patient-

centred' care; with a clear statement that services are not

just about medical treatment but should also address

psycho-social needs. Some of the recommendations ±

notably site specialization in surgical services ± challenge

current working practices, whilst others ± such as psycho-

social support ± are potentially difficult to define and

implement. Nevertheless, both management and the

professions seem determined to respond if only because

one of the main sources of support for the report is the

Health Policy

Correspondence address: Professor M.B. McIllmurray, Macmillan Consult-

ant in Medical Oncology and Palliative Care, Royal Lancaster Infirmary,

Ashton Road, Lancaster LA1 4PR, UK.

European Journal of Cancer Care, 1998, 7, 168±173

Paper 98 DISC

# 1998 Blackwell Science Ltd

Ahed

Bhed

Ched

Dhed

Ref marker

Fig marker

Table marker

Ref endRef start

European Journal of Cancer Care

# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 168±173 169

increasingly influential National Cancer Alliance, an

organization which expresses the views of patients.

It is premature to predict the outcome of attempts to

restructure cancer services nationally. The North-West

region is in the early stages of implementing the report

under the direction of a Cancer Co-ordinator. In the

authors' locality, Lancaster and Kendal have been desig-

nated as a cancer unit for cancers of the breast, large bowel

and lung and for palliative care. In this policy context the

authors have initiated a study, funded by the NHS

Executive North-West, which focuses on the psycho-social

aspects of cancer care and aims to inform decisions about

the nature of non-surgical specialist services in cancer

units in the North-West region in relation to the psycho-

social needs of patients and their informal carers. The first

phase of the 3-year study began in January 1997 and

included semi-structured interviews with 29 health care

and related professionals currently involved in the provi-

sion of cancer services in Lancaster and Kendal. The

professional designations of those interviewed are shown

in Table 1.

This paper discusses some of the issues which emerged

in these interviews, focusing in particular on the perceived

changes taking place in hospice care to meet the

requirements of a modern specialized palliative care unit.

It is not the intention here to provide a detailed report of

the interview data per se, but to offer personal reflections

on a few of the themes and issues which emerged most

strongly in the interview encounters with a range of

cancer service professionals. Changes in the hospice

movement can be used to illustrate some of the con-

troversies and potential sources of conflict in cancer

services as a whole.

LOCAL SERVICES

Cancer services in North Lancashire and South Cumbria

have developed since the appointment of a medical

oncologist in Lancaster and Kendal in 1978. There are

treatment units in the two main hospitals, a 26-bed

hospice which opened in 1985 and a voluntary organiza-

tion, CancerCare, which provides psycho-social support

and relaxation therapy for patients and families in this

area. For a decade or so the hospice was run by General

Practitioners and only eight of 21 (38%) nursing staff were

trained in palliative care. In the past 3 years several staff

changes have brought the hospice into line with the

requirements for a specialized palliative care unit. These

include the appointment of a consultant physician and a

clinical assistant in palliative medicine, a medical social

worker and a physiotherapist. Day care has been intro-

duced and now 18 of the 28 (64%) nursing staff have

specialist training in palliative care. This has been

associated with a change in working practices so that

the number of hospice admissions has risen and the mean

length of stay has decreased whilst the number of patients,

the beds occupied and the number of deaths have

remained the same (Figures 1±4). Thus the time patients

and families can spend with hospice staff for emotional

and spiritual adjustment has been reduced, perhaps even

sacrificed, for greater efficiency. A look at hospice services

nationally affirms these patterns. The creation of pallia-

tive medicine as a subspecialty of general internal

medicine recognized by the Royal College of Physicians

Table 1. Professionals inter-viewed for the pilot study

Consultants 7General practitioners 4Nurses 8PAMs* 4Management 2Other 4Total 29

*PAMs, professions allied tomedicine.

Figure 1. Total annual admissions 1988±1996. &, admissions;&, first admissions; , respite admissions.

Figure 2. Changes in mean length of stay 1988±1996.

in 1987, has led to a gradual shift from a nursing to a

medical model of care (National Council for Hospice and

Specialist Palliative Care Services 1993).

THEMES AND ISSUES

The interviews with professionals involved in the provi-

sion of cancer services in Lancaster and Kendal highlighted

three key themes, or issues of concern: links between

services; changing organizational factors encouraging the

growth of routine and bureaucracy; and increasing `medical

imperialism'. These issues of concern were widely shared

but variously interpreted by the informants. Using these

themes as `triggers' the authors offer their own reflections

on developments in hospice care.

Links with other services

Fundamental organizational changes have followed the

introduction of the National Health Services and Com-

munity Care Act 1990 (UK). One effect has been to bring

hospices and palliative care services more into the front

line of health care provision, potentially opening the way

to greater integration and collaboration with other

services in the mixed economy of health (National

Council for Hospice and Specialist Palliative Care Services

1993). Conversely, the ethos of competition which has

sharpened up the image of many services has its

disadvantages. Data from the authors' pilot study sug-

gested that links between services have suffered. For

example, a physiotherapist experienced increasing diffi-

culty in referring patients to other services ± such as

community physiotherapy and occupational therapy ± due

to changes in funding arrangements. In relation to the

social/health services divide two interviewees referred to

problems in obtaining residential care funding for people

who had been hospice inpatients. As shorter stays and

repeated admissions for palliative care are becoming the

norm in hospices, the number of patients in this situation

is increasing. In addition, an experienced social worker

expressed great dissatisfaction with the growing focus on

administrative tasks in social services. There seems little

doubt that changes are taking place which make relation-

ships with other services more tenuous.

Routine and bureaucracy

It is now 50 years since St. Christopher's founder died.

David Tasma left a £500 founding gift `to be a window in

your home'. Dame Cicely Saunders has described how `we

moved out of the National Health Service, with a great

deal of its interest and support, in order to build round that

window' (Saunders 1981). Whether in or out of the NHS,

everyone can still be attracted by the original philosophy:

In the hospice movement we continue to be con-

cerned both with the sophisticated science of our

treatments and with the art of caring, bringing

competence alongside compassion. (Saunders 1981: 4)

Saunders spoke much of similar dichotomies and the

importance of creative tension: `it is as if one were

continually putting up two different poles and letting the

sparks fly between' (ibid: 4).

Over the years the hospice ethos has witnessed an

increase in rationalization, together with an increase in

routine work and bureaucracy (James & Field 1992). As a

consequence, scope for flexibility and innovation is

threatened. In addition, there are indications that the

spiritual care given by these institutions is becoming

secularised (Bradshaw 1996; Walter 1997). A number of the

authors' informants regretted these developments, whilst

others saw them as inevitable and/or as offering new

opportunities. The current health care climate exhibits

170 # 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 168±173

MORRIS ET AL. All change: cancer services in transition

Figure 3. Changes in bed occupancy 1988±1996.

Figure 4. Admissions, discharges and deaths 1988±1996.&, admissions; &, deaths; , discharges.

both a concern for evidence-based practice, and a desire to

limit expenditure. In this climate `it will not be sufficient

to assert that the hospice sector provides superior care but,

on the contrary, it will be necessary to demonstrate that

this is the case' (Goddard 1993).

However, quantifying and evaluating the efficacy of

such phenomena as spiritual care or empathy is a complex

project, requiring time and innovation (Higginson et al.

1996). Thus the demand for quick and simple data may

dominate, and the evidence-base may focus solely on the

technical and easily measured aspects of care (James &

Field 1992). It may, of course, transpire that the `extras'

and `de-luxe' nature of many hospice services are un-

justifiable in terms of effectiveness and economy. Yet

hospices provide a special, perhaps unique, arena in the

health services through which one may develop an

understanding of the intricacies of care, in contrast to

cure. Market and research pressures may deny us the

opportunity to do this.

However, while some patients may lose out as care is

standardized, other patients may benefit. Current debates

within palliative care circles are grappling with notions of

equity and access. Cancer patients are increasingly seen as

privileged over other incurable patients, and as receiving a

greater `slice of the cake' in terms of services and support.

Implementation of the recommendations of the SMAC/

SNAC joint report (Standing Medical Advisory Commit-

tee 1992) would lead to an influx of new patients and

expansion of service domain (Addington-Hall 1997). In

order to cope with this, further restructuring ± involving

ever-increasing rationalization, bureaucracy and perhaps

`medical imperialism' ± of palliative care services would be

necessary (Higginson 1993). Some local support for such a

move was evident in the authors' pilot study. As one

manager put it, `the worm is turning', and even the charity

money funding extra supportive services is being eyed

with its potential for other uses in mind. Thus special

treatment for the few may translate into improvements for

the many (Douglas 1992).

`Medical imperialism'

The third area of concern focuses on the issue of what can

be termed `medical imperialism'. Over recent years

doctors ± both in training and in practice ± have learned

to work more closely alongside professionals of many

disciplines. However, it has been at a cost for doctors. The

doctor may no longer be, or be seen to be, at the centre of

the health universe. Yet, in hospices, doctors have perhaps

never been quite the centre of attention they are in other

specialities. Only recently have they begun to assume

such a role with the advent of palliative care as a medical

speciality (Hillier 1988). This was an issue talked about,

and variously viewed, by a number of our informants.

Bradshaw (1996) has argued that the spiritual ethos of

hospices is being lost, and that the activity of contempor-

ary palliative care now lies essentially in the secular

domain. Technique and `doing' has taken the place of

`being with'. She suggests that as `the original spiritual

values diminish, so the values become those of the expert'.

Her analysis underlines certain questions which revolve

around `medical imperialism'.

In the authors' pilot study the shift from `de-luxe

nursing home' to a more medical service has been

exemplified in recent changes referred to by informants.

There has been a move from nurse±nurse referrals towards

doctor±doctor referrals and an increased occurrence of

medical procedures such as blood transfusion, paracentesis

and treatment of hypercalcaemia, in the hospice setting.

The introduction of an outpatient clinic and the restruc-

turing of day care services have facilitated this new

approach. Thus, individual patients may move through

all or just some of the different levels of care. In addition,

the hospice now has a resuscitation trolley for the first

time in its history. While representing a move to more

specialist medical services, these innovations were also

presented as having the advantage of familiarising patients

and carers with the hospice over the course of the illness,

and as contributing to a modification of its old image as a

place in which to die.

Inevitably a more medicalized approach will become

evident. A shift of this kind is likely to give opportunities

for the refining of methods of symptom control. The

hospice staff to whom the authors spoke suggested that

patients in close contact with the hospice benefited from a

feeling of safety, and that their symptoms ± especially pain

± could be dealt with swiftly. The technical and medical

services on offer at the hospice were seen to have a knock-

on effect in terms of patients' well-being.

However, potential harms also exist. Bradshaw (1996)

places therapists and nurses in the same camp as doctors

in her analysis of the loss of spiritual focus. Yet data from

the authors' pilot study suggest that the changes are

affecting the various occupational groups in different

ways. The medical and technological aspect of palliative

care is quickly securing a place and status in the changing

scenario of hospice care. Medical practices have almost

instant legitimacy in any health care setting. Nurses have

struggled long and hard to achieve credibility and respect.

Their claims to legitimacy are founded on `care' rather

than `cure', and the care of the terminally ill is an area in

which a great deal of nursing expertise has been developed.

# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 168±173 171

European Journal of Cancer Care

Thus, the profession is somewhat sceptical of the shift to

medicalize `care'. Yet nursing ± perhaps due to its more

established position in the health service, and a history of

willingness to work alongside the medical profession ± is

not as threatened by these changes as other groups of

support personnel might be. The ambiguous position of

other occupational groups who found a home within

cancer support services, such as counsellors and comple-

mentary therapists, has exposed them to changes. As

hospice services are absorbed more into the mainstream,

the marginal position of such support services is high-

lighted. Frequently they have been incorporated in an ad-

hoc fashion, and their development in many ways parallels

that of the hospices. Like the hospices, they are being put

under increasing pressure to justify their worth. However,

the different `paradigm' under which holistic approaches

to cancer operate can constrain communication and

acceptance of, for example, `being researched'. At the

time of the authors' pilot study, these support services

were certainly in a state of flux, and efforts were being

made to integrate them more closely with the hospice. For

the first time in several years the budget for these services

was being successfully controlled. Problems with both

admission to, and discharge from, relaxation therapies

were being addressed, and firmer protocols applied. The

use of a standard anxiety and depression scale had become

routine. Shorter courses of treatment were being encour-

aged, mirroring shorter admissions in the hospice.

While changes in the hospice culture are being docu-

mented and examined as they occur (National Council for

Hospice and Specialist Palliative Care Services 1993) the

knock-on effects for any `complementary' services are

generally neglected. Although justification for this kind of

add-on service is based on limited evidence (however, see

for example: Speigel & Bloom 1983; Bridge et al. 1988;

Spiegel et al. 1989) they represent an interesting example

of medical and complementary practices working together

from which much may be learned (McIllmurray et al.

1986; Morris 1996; Soothill & Thomas 1998).

COMMENT

It could be argued that Lancaster and Kendal have had a

cancer service akin to that recommended by the Calman-

Hine report for over a decade (McIllmurray et al. 1986).

Soothill and Thomas (1998) have studied the origin and

developments of CancerCare, the organization developed

locally to provide psycho-social support and regarded as an

essential element of the service provision. They stress the

complexity of the individual and socio-structural factors at

work. This paper draws on interviews with some of the

individuals involved in the CancerCare developments as

well as with those more recently connected to cancer

services in Lancaster and Kendal. The accounts given by our

informants give an insight into the consequences of changes

in service provision resulting from government legislation

and the establishing of palliative medicine as a new medical

speciality. More specifically they illustrate the impact of the

reforms arising from the NHS and Community Care Act

1990 (UK) and the medicalization of a service previously

regarded as the province of the nursing profession.

The introduction of an internal market stimulated by a

political requirement to contain public spending on health

care sits uneasily with the voluntary sector which has

contributed so much to palliative care over the years; yet

the voluntary sector is increasingly seen as a provider of

statutory services and is being undermined by the

demands of the contract culture. The tensions between

the `integrated vision' of the hospice movement and the

NHS ideal of `efficient bureaucracy' are not easy to

reconcile and require a delicate balance to be maintained.

Clark et al. (1995) suggest the need for a mutually

acceptable exchange between health authority purchasers

and hospice providers but point to concerns expressed by

the National Hospice Council about relying on statutory

funding alone for palliative care. Such partnerships are

difficult to maintain when the power bases of each of the

participants are so very different.

To what extent these issues apply to cancer services as a

whole is not known. The authors' pilot study suggests

they symbolise the broader debates at least in the area of

psycho-social supportive care. Does the ethos of competi-

tion necessarily damage developing links between ser-

vices? Are rationalization, increasing routine and bureau-

cracy the enemies of flexibility and innovation? Does

increasing medicalization adversely affect the potential

contribution of other occupational groups?

Dame Cicely Saunder's love of dichotomies also

produces dilemmas. Perhaps as an optimist she pro-

claimed all those years ago that `by establishing what

look like opposites and not trying to achieve a false

reconciliation, we may end by showing in fact that they

can coexist'; but she warns against trying to achieve a false

reconciliation (1981). The dilemma is to assess whether

we lack the vision of a Saunders in asserting that there is a

danger in believing that some of the identified opposites

can, indeed, coexist. The famous Danish physicist Niels

Bohr once commented that:

One of the favourite maxims of my father was the

distinction between the two sorts of truths, profound

truths recognized by the fact that the opposite is also a

172 # 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 168±173

MORRIS ET AL. All change: cancer services in transition

profound truth, in contrast to trivialities where

opposites are obviously untrue. (Rozental 1967: 328)

Sadly, our real dilemma is deciding whether we are

talking about profound truths or trivialities!

Acknowledgements

This research was funded by the NHS Executive North-

West, UK.

References

Addington-Hall J. (1997) Life before death ± the disadvantagedmajority. In: Proceedings of the Making Progress in PalliativeCare Conference 10±11 March 1997 Sheffield, Trent PalliativeCare Centre (ed. Ahmedzai S.), pp. 1±2. Progress in PalliativeCare, LMI, Leeds.

Bradshaw A. (1996) The spiritual dimension of hospice: the sec-ularisation of an ideal. Society of Science Medicine 43, 409±419.

Bridge L.R., Benson P., Pietroni P.C. et al. (1988) Relaxation andimagery in the treatment of breast cancer. British MedicalJournal 297, 1169±1172.

Clark D., Neale B. & Heather P. (1995) Contracting for palliativecare. Society of Science Medicine 40, 1193±1202.

Department of Health. (1995) A Policy Framework for Commis-sioning Cancer Services: a Report by the Expert AdvisoryGroup on Cancer to the Chief Medical Officers of England andWales. Department of Health, London.

Douglas C. (1992) For all the saints. British Medical Journal 304, 579.Goddard M.K. (1993) The importance of assessing the effectiveness

of care: the case of hospices. Journal of Social Policy 22, 1±17.Higginson I. (1993) Palliative care: a review of past changes and

future trends. Journal of Public Health Medicine 15, 3±8.Higginson I.J., Hearn J. & Webb D. (1996) Audit in palliative care: does

practice change? European Journal of Cancer Care 5, 233±236.

Hillier R. (1988) Palliative medicine: a new speciality. BritishMedical Journal 297, 874±875.

James N. & Field D. (1992) The routinisation of hospice: charismaand bureaucratisation. Society of Science Medicine 34, 1363±1375.

McIllmurray M.B., Gorst D.W. & Holdcroft P.E. (1986) Acomprehensive service for patients in a district general hospital.British Medical Journal 292, 669±671.

Morris S. (1996) A very privileged position: metaphors used bycomplementary therapists receiving NHS oncology referrals.Journal of Contemporary Health 4, 53±55.

National Council for Hospice and Specialist Palliative CareServices. (1993) Needs Assessment for Hospice and SpecialistPalliative Care Services: from Philosophy to Contracts. Occa-sional Paper 4. National Council for Hospice and SpecialistPalliative Care Services, London.

Rozental S. (1967) Niels Bohr: His Life and Work as Seen by HisFriends and Colleagues. North Holland Publishing Company,Amsterdam.

Saunders C. (1981) The founding philosophy. In: Hospice: theLiving Idea (eds Saunders C., Summers D.H. & Teller N.), p. 4.Edward Arnold, London.

Soothill K. & Thomas C. (1998) Developing a comprehensiveservice for patients with cancer at a district level: the NorthLancashire and South Lakeland story. Journal of ContemporaryHealth 6, 69±71.

Spiegel D., Kraemer H.C., Bloom, J.R. et al. (1989) Effects ofpsycho-social treatment on survival of patients with metastaticbreast cancer. Lancet 14, 888±891.

Spiegel D. & Bloom J.R. (1983) Group therapy and hypnosis reducemetastatic breast carcinoma pain. Psychosometic Medicine 45,333±339.

Standing Medical Advisory Committee (1992) The Principles andProvision of Palliative Care. Joint Report of the StandingMedical Advisory Committee and Standing Nursing andMidwifery Advisory Committee. HMSO, London.

Walter T. (1997) The ideology and organisation of spiritual care:three approaches. Palliative Medicine 11, 21±30.

# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 168±173 173

European Journal of Cancer Care