Clinical Oncology (2004) 16: 420e424

doi:10.1016/j.clon.2004.05.008

Short Report

The NICE Guidance on Supportive and PalliativeCare d Implications for Oncology Teams

R. Thomas*y, A. Richardsonz

*Primrose Oncology Unit, Bedford Hospital NHS Trust, Cambridge; yAddenbrooke’s Hospital NHS Trust,

Cambridge, UK; zFlorence Nightingale School of Nursing and Midwifery, Franklin Wilkins Building, London, UK

Received: 24 May 2004 Accepted: 27 May 2004

Hold on to your stethoscopes, button down your whitecoats d the National Institute for Clinical Excellence(NICE) guidance on supportive and palliative care [1] haslanded and will probably have significant ramifications forthe daily working practices of oncologists. If we think wecan sit back, relax and read this over a cup of hot cocoa,then place it on the top shelf to collect dust, we have gotanother thing coming d the recommendations are bothradical and comprehensive and compliance will be mon-itored with vigour.

At first glance, the 204 pages seem an onerous additionto the torrent of reading material confronting the busyoncology team. Its recommendations are, however, gener-ally sensible, based entirely on published evidence andclearly laid out in the well-written genre of NICE docu-ments. Its fundamental aims are to improve the well-beingof both patients and staff alike, but in the short-term thismight have some uncomfortable workload implications forour practice. So before implementation activity gets intofull swing it is well worth a read d after all forewarned isforearmed.

Why was it Written?

Although many patients report positively on their experi-ence of care, there are still too many who say that they didnot receive the information and support that they needed atdifferent steps in the care pathway [2]. The first NationalCancer Patient Survey showed wide variations in the qual-ity of care delivered by the best and worst hospitals acrossthe country.

The needs of patients for supportive and palliative caremay not be met for several reasons. First, the services fromwhich they might benefit may not be universally available.

Author for correspondence: Dr Robert Thomas, Consultant Oncologist,

Addenbrooke’s and Bedford Hospitals, Cambridge University NHS Trust,

Hill’s Road, Cambridge CB2 2QQ, UK. Tel: D44-1223-216-555; Fax:

D44-1223-216-589; E-mail: rt@cancernet.co.uk

0936-6555/04/000000C05 $35.00/0 � 2004 The Ro

Second, even when the services are available, the needs ofpatients may go unrecognised by professionals, who there-fore do not offer referral. Third, poor inter-professionalcommunication and co-ordination, in a minority ofclinicians, has been reported in studies of patients’experience of care resulting in sub-optimal care [6].

How was it Written?

The approach used to develop the supportive and palliativecare guidance was similar to that adopted for the site-specific NICE service guidance reports. The views of arange of professionals and service users (patients andcarers) were canvassed at each step in the process. Aneditorial panel prepared a draft guidance, appraised in thelight of research evidence. This draft was then madeavailable for consultation through the NICE website and bye-mail to stakeholders throughout England and Wales.After further editing in response to the consultation com-ments and panel discussion the document was published inMarch 2004.

Implementation and Compliance

The document initially states that it is intended only tocomplement the series of ‘improving outcomes’ guidancereports on site-specific cancers. It goes on to say it high-lights examples of evidence-based, best practice servicemodels, and its philosophy is to initiate change throughpersuasion rather than enforcement. We are afraid thatthese reassuring undertones drop rapidly away when thedocument goes on to reveal the teeth of the ‘wolf in lamb’sclothing’. It highlights that the NHS Plan has made it clearthat the NHS will be expected to implement the recom-mendations in this and the other site-specific guidancereports [3]. This was re-emphasised in the Planning andPriorities Guidance issued in December 2002 [4,5].Anecdotally, the army of NHS pen-pushers has alreadyjumped on the enforcement bandwagon; a recent memo in

yal College of Radiologists. Published by Elsevier Ltd. All rights reserved.

421THE NICE GUIDANCE ON SUPPORTIVE AND PALLIATIVE CARE

a large teaching hospital, for example, read ‘it’s the lawthat from 1st April all letters have to be copied to thepatients’. Although the issue of letters to patients isaddressed and supported in the guidance (key recommen-dation 8), there were several caveats discussed, exempli-fying that this point and potentially others are vulnerable tomisinterpretation. First, it refers only to key consultations.Second, it should be offered and only sent to those whoaccept as in some it may cause distress. Third, the wellresearched accompanying economic review highlights theextra cost this change would entail, including extra clinicand secretarial time, postage and stationery. The author ofthis and no doubt several forthcoming memos should bereminded that the extra manpower and financial resources,for this and the other recommendations, should be put inplace before changes are dictated and thoughtful inter-pretation is the order of the day. As for the NICE recom-mendations becoming UK law, it is flattering to theeditorial panel but naı̈ve to think that they will ever maketheir way through to become constitutional legislation.

The implementation process will be managed throughcancer networks. The networks are regarded as best posi-tioned to embrace the partnerships of organisations (bothstatutory and voluntary) needed for the effective planning,delivery and monitoring of supportive and palliative careservices. It is anticipated that they will provide the frame-work to develop quality services by bringing together therelevant health and social care professionals, service usersand managers necessary for implementation.

It is anticipated that the recommendations in the guid-ance will promote clinical governance through their incor-poration into the national cancer standards, so that thequality of supportive and palliative care services can bemonitored through quality assurance programmes (e.g. thepeer review appraisal programme in England). Further-more, audits of the outcome of supportive and palliativecare delivery will need to be developed. As the guidancesets out recommendations relating to all levels of theNHS d the cancer networks, commissioners, workforcedevelopment confederations, provider organisations, clini-cal teams and individual clinicians d nobody can assumethat they will be immune to scrutiny.

When Should it be Implemented?

There is no set timeframe; however, as some of the recom-mendations in this guidance build on existing good practicethey should be acted on as soon as possible. In some in-stances, significant activity is already under way to supportimplementation, such as the national communication skillstraining rollout and the programme of training and supportfor district nurses in principles and practice of palliativecare. Other recommendations, particularly those thatrequire further training and appointment of additional staff,will inevitably take longer. A general feeling is that mostnetworks should be well down the road of implementationwithin a year or two.

Overview of the Service Model and Key Recommendations

The guidance document is structured into 13 topics andencapsulated in 20 key recommendations. An abridgedversion is summarised below. (For brevity the term ‘pro-viders’ refers to cancer and palliative care services bothstatutory and voluntary, including cancer networks, com-munity organisations, hospitals, multidisciplinary teamsand individual health professionals.)

Co-ordination of Care

(1) All providers should establish processes to ensurethat the services are planned and developed in linewith recommendations.

(2) Providers should ensure that the full spectrum ofphysical, psychological, social and spiritual care ismade available at all points in the patient pathwaytailored to the individual needs and preferences ofpatients and based on comprehensive and regularassessment.

(3) Providers should ensure the effective communicationof decisions made by the multidisciplinary team to allwho need to be made aware of them, includinga specifically appointed key worker for each in-dividual patient.

User Involvement

(4) The views of patients should be ascertained duringthe development and evaluation of provider services[7].

Face-to-Face Communication

(5) All staff in contact with the patient should receivecommunication skills training to an appropriate leveland be an effective communicator, or at least be ableto refer to staff that are.

(6) After key consultations patients should be offereda permanent record of the consultation.

Information

(7) Each provider service should develop formal policiesdetailing what information should routinely beoffered at each step in the patient pathway.

(8) Providers should ensure the availability of a range offree information services, including verbal counsel-ling, written and video materials. They should bespecific to each stage of the individual patient’smanagement, and sensitive to the level of informationthey desire, their cultural, educational, spiritual andlanguage needs [8,9].

422 CLINICAL ONCOLOGY

Psychological Support Services

(9) Providers should ensure that all patients undergo sys-tematic psychological assessment at key points in thecare pathway and have access to a four-level modelof professional psychological intervention.

Social Support Services

(10) Explicit partnership arrangements need to be agreedbetween local health and social care services to ensurethat the needs of cancer patients and their carers aremet in a timely fashion and that the different compo-nents of social support are accessible from all loca-tions (e.g. hospital, home, care home, hospice).

Spiritual Support Services

(11) Providers should ensure that patients and carers haveaccess to suitably qualified, authorised and appointedspiritual care providers and are informed of local com-munity resources for spiritual care.

General Palliative Care Services

(12) Mechanisms need to be implemented within eachlocality to ensure that medical and nursing servicesare available 24 h a day for patients with advancedcancer and that equipment can be provided withoutdelay.

(13) Primary care teams should institute mechanisms toensure that the needs of patients with advanced can-cer are assessed and communicated within the teamand with other professionals as appropriate.

(14) In all locations the particular needs of patients whoare dying from cancer should be identified and ad-dressed.

Specialist Palliative Care Services

(15) Providers should ensure an appropriate range ofspecialist palliative care services to meet the 24-hneeds of the local population. These services, at a min-imum, include specialist palliative care inpatientfacilities, hospital and community teams. Communityteams should be able to provide support to patients intheir own home, community hospitals and care homes.

Rehabilitation

(16) Providers should ensure that an appropriate range ofspecialist rehabilitation services is available topatients in all locations, including physiotherapists,occupational therapists, dieticians, speech andlanguage therapists, lymphoedema specialists, stomatherapists and appliance officers.

Complementary Therapies

(17) NHS and voluntary sector providers should work inpartnership to decide how best to meet the high de-mand for complementary medicine from patients. Ata minimum, information should be made available topatients about complementary therapies and services.If services are to be provided within NHS facilities,guidelines should be developed.

Services for Families and Carers

(18) Organisations providing cancer services shouldnominate a lead person to oversee the developmentand implementation of services that specifically focuson the needs of families and carers, both during thelife of the patient and in bereavement.

Workforce Development

(19) Providers should identify the additional specialiststaff that will be needed to implement these recom-mendations particularly in roles related to informa-tion delivery, psychological support, rehabilitation,palliative care and support for families and carers.

(20) Providers should identify staff that may benefit fromtraining and should facilitate their participation intraining and ongoing development. Individual clini-cians should also ensure that they have the knowl-edge and skills required for the roles they undertake.

How Much Will it Cost to Implement this Guidance?

The School of Health and Related Research (ScHARR),based at the University of Sheffield, carried out an eco-nomic review on the main aspects covered by the guidance.Major issues were identified and prioritised, based on theprobable scale of economic impact. It did not attempt toconsider the cost-effectiveness of guidance implementation,given the limited evidence available on outcomes. Simi-larly, the review considered the cost of implementing theguidance, but not where costs might fall, for example wherebetter co-ordination or reduced drug intervention mightresult. Social support services, such as respite care andassisted transport, which straddle social services and NHS-funded provision as well as voluntary sector provision,were also not costed. Furthermore, training and workforceimplications of the guidance, excluding communicationskills, were not addressed in detail. Finally, the costsassociated with audit and monitoring activities were notconsidered. It is assumed that any cost related to audit andmonitoring activities will be borne by providers andcommissioners as part of their general activity. Table 1summarises cost implications within the 13 guidancetopics. However, given the caveats highlighted above, thetotal estimate d despite the best efforts of ScHARR d hasto be regarded as a back of an envelope estimate.

423THE NICE GUIDANCE ON SUPPORTIVE AND PALLIATIVE CARE

Table 1 e Summary of cost implications within the 13 guidance topics for England and Wales*

Category Cost area Annual additional costs

Co-ordination of care Networks leads £0.6e£1.2m

Network directories Set-up £1m running £0.4m

User involvement Training and support £1.7m

Face-to-face communication Extra records of key consultations £2.9m

Extra interpreters £0.7m

Communication courses £722 per 3-day course (1500/year is £1m)

Information Developing cancer centres £7.0m

Ongoing staff cost Unspecified

Booklets and backup videos £2.5m

Extra training Unspecified

Psychological support services More psychiatrists, psychologists, counsellors

and psychotherapists

£12.7m

Social support services Social care and assessments by social workers £7.5m

Bereavement support £17.2m

Education and training Unspecified

Spiritual support services Spiritual support services £4.1 (2.5m extra)

Training and education Unspecified

General palliative care services Implementing a primary care plan framework £2.8m in the first year and £2.2m per annum running

Out-of-hours district nursing service £33.2e89.9m (depends on existing level of service)

Specialist palliative care services Specialist palliative care provision £440.3m (current £398.5m, therefore extra is £42m)

Inpatient beds £238m

Community teams £68m

Hospital teams £58m

Bereavement services £46m (includes £17.2m above and £16.1m below)

Rehabilitation services Rehabilitation assessment and support £238m (although current expenditure unspecified)

Training and education Unspecified

Complementary therapies Directories and guidance Unspecified

Families and carers support and

bereavement service

Family and carer support £3.4m

Bereavement support £16.1m

Workforce development New posts and training Incorporated in above costs

Total estimate Set-up costs £8.6m

Annual running costs £182.1e240.4m

*A formal cost-effectiveness study was not carried out. Figures in italics represent set-up cost.

With regard to the question on the tip of most of ourtongues d ‘where is the money coming from?’ d neitherthe economic review nor guidance touch on the delicatequestion of sources of funding or issues relating torespective contributions of both the NHS and voluntarysector and how this is best resourced.

How Could this Guidance be Implemented?

Some of these recommendations could be met bymodifying existing pathways, particularly in the area ofinter-professional communication and co-ordination. Forexample, removing the barriers of existing formal referralbetween oncology and palliative care would avoid delays inboth directions. This might be expedited by setting up

a system where all palliative care patients are assessed andsubsequently referred to the hospital palliative care teamshortly after admission by the ward nurse, rather than waitfor the oncology team. Copying clinic letters to the palli-ative care team and allowing rapid access by the com-munity team to the hospital electronic notes of patientswould avoid uncertainties of care in the community, whilestill adhering to the General Medical Council guidelinesregarding information on patients [10].

The pressures on manpower could be helped by en-couraging NHS trusts to be flexible in the development ofnew roles and new ways of working. A prime examplemight be the development of clinical nurse specialists’assessment skills with respect to psychological well-being,and opportunities for this group to undertake simple psy-chological interventions such as anxiety management. The

424 CLINICAL ONCOLOGY

role of ‘key workers’ proposed in the guidance might, forexample, be taken on by a range of individuals, includingpractice and district nurses, oncology nurses or therapeuticradiographers. The best means of achieving continuity andco-ordination might lie in the establishment of community-based oncology nurses, a notion already being evaluated byMacmillan Cancer Relief. The possibilities are endless butwill require professional groups to embrace the need forchange and might in some cases require a willingness torelinquish or assume new ways of working and new roles.

Other recommendations in this guidance could be met byrefining existing pathways. Secretaries, for example, doa noble job ensuring letters are written and sent promptly tothe appropriate associated professional at the correctaddress. Yet, few secretaries have sufficient slack in theirday to ensure a completely reliable service particularly asthey often are ‘fire fighting’ for colleagues. On top of this,they are being asked to expedite more rapid communica-tion, requiring fax or telephone calls to community teamsand general practitioners. Similarly, oncology nurses areincreasingly exchanging information with palliative careteams, district nurses, ward staff and other professionals.Similar examples could be cited throughout the NHS, butthe point being made is that it would be wise to invest in thegoodwill and practice that we already have, before intro-ducing sweeping changes, putting us in danger of throwingthe baby out with the bath water.

Notwithstanding modifications and expansions in exist-ing services, there still needs to be considerable finance andmanpower investment in new processes and services, if theremaining recommendations are to be realistically met. Inparticular, in the areas of information delivery, rehabilita-tion, palliative care and support for families and carers.Psychological support which, for example, is currentlyrarely available in existing daily oncology practice, wouldrequire the appointment of many more psychologists andcouncillors throughout England and Wales. Even assumingthe money is available, the practicalities of finding andrecruiting suitably qualified staff, providing hospital spaceand secretarial support will present an enormous challenge.Nevertheless, if we are going to catch up with the range ofsupport services offered in mainland Europe and the USA,this and the other challenges should be embraced, but witha long-term game plan.

Finally, the relative paucity of the research evidencerelated to many of the areas covered by this guidance wasrecognised by the guidance developers. The guidancestrongly recommends that further research should be tar-geted at gaps identified through this process. Unfortunately,it does not suggest where resources for this might comefrom but encourages commissioners of research to lookmore favourably on this type of research. The NationalCancer Research Institute has, for example, recently set up

a consultation conference exploring the opportunities forclinical trials involving complementary medicine. Further-more, following House of Lords recommendations, theDepartment of Health are supporting a project beingundertaken by the Research Council for ComplementaryMedicine to summarise the evidence for complementarymedicines and highlight areas of most needed research.

The aim of this guidance is to define the service modelsthat will ensure that adults with cancer, along with theirfamilies and carers, receive the support and care they needto help them cope with cancer and its treatment at all stagesof the illness.

Most oncology staff are highly trained, motivated, caringand have a far from Luddite culture. They are used to thechanging face of oncology practice and most would warmlywelcome these level-headed recommendations. After all, inthese days of audit and central scrutiny, happy patients notonly make happy doctors but also happy politicians d andhappy politicians mean more resources for all of us.

Acknowledgements. Professor Alison Richardson was the chair ofthe guidance development group for the supportive and palliative careguidance. Dr Robert Thomas was a member of the editorial panel witha special interest in patient information.

References

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10 General Medical Council. Confidentiality: protecting and providinginformation. London: General Medical Council, April 2004. Availablefrom: http://www.gmc-uk.org.