l -NHS EoLC Programme Holistic Common Assessment Document 2010

8/9/2019 l -NHS EoLC Programme Holistic Common Assessment Document 2010

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Holistic common assessmentof supportive and palliative care needs for adults

requiring end of life care


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Foreword from Professor Alison Richardson 1

1 Introduction to this guidance 3

1.1 About holistic common assessment 3

1.2 About this guidance 3

1.3 Who this guidance is for and how it can be used 4

1.4 How the guidance was developed 4

1.5 Relationship to other national policy initiatives 5

1.6 Where next for holistic common assessment? 5

1.7 Notes on this guidance 6

1.8 Guide to terms used 6

2 The process of holistic common assessment 62.1 Who should be assessed? 7

2.2 When should the assessment take place? 7

2.3 Where should the assessment take place? 9

2.4 Who should undertake the assessment? 9

2.5 Preparing to carry out an assessment 10

3 Steps following assessment 10

3.1 Recording, storing and sharing information from the assessment 10

3.2 Taking action 114 Assessment content 12

4.1 Domain 1: Background information and assessment preferences 13

4.2 Domain 2: Physical well-being 15

4.3 Domain 3: Social and occupational well-being 17

4.4 Domain 4: Psychological well-being 19

4.5 Domain 5: Spiritual well-being and life goals 21

Appendix (i) National Steering Group 23

Appendix (ii) Resources 24Appendix (iii) The differences between general care planning 25and decisions made in advance

Contents


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Assessment forms a key part of providing person-centred care. One reason services canfail to meet an individual’s needs is that professionals may not have adequately assessedhis or her needs and preferences for care. At the other end of the spectrum a person

may undergo numerous assessments by different health and social care professionals,without reference to previous assessments. This can lead to frustration and is often anindication of poorly co-ordinated services.

Holistic assessment serves to identify the person’s unmet needs, and highlights whereother practitioners need to be involved in order to address this. A person’s preferencesand wishes regarding both the type and location of care can also be elicited - helpingthem remain in control and supporting dignity and choice.

Guidance on holistic assessment was first released in January 20071 in order to supportteams in implementing the National Institute for Clinical Excellence’s recommendations

for assessment, set out in its 2004 guidance on supportive and palliative care for adultswith cancer2. It was intended to enable managers and practitioners to adopt a unifiedapproach to assessment and recording of an individual’s needs. It was designed for useby healthcare teams as a benchmark against which current local assessment processescould be appraised.

At the time of its publication it was anticipated that the guidance would be furtherrefined to suit assessment in different care contexts, such as end of life care andsurvivorship. Indeed, people at the end of life frequently have highly complex and wide-ranging needs: effective processes for holistic assessment are particularly important herein order to minimise repeated unnecessary assessments in the final phase of life. TheEnd of Life Care Strategy3 recognised this, noting the importance of carrying outholistic assessment that covers physical, psychological, social, cultural, environmental,spiritual and financial needs. The Strategy stressed the importance of treating people asindividuals, assessing their needs, preferences and priorities, supporting them in makingchoices about care and agreeing a care plan which reflect these.

Foreword

1 Holistic common assessment of supportive and palliative care needs for adults with cancer. King’s College London, 2007.2 Guidance on cancer services: improving supportive and palliative care for adults with cancer. National Institute of Clinical

Excellence, 2004.3 End of Life Care Strategy - promoting high quality care for all adults at the end of life. Department of Health, 2008.

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In response to this the National Cancer Action Team approached the National End ofLife Care Programme with a view to working together to further develop and adapt the2007 guidance on assessment as it applies to end of life care. While the original

guidance on assessment was confined to the field of cancer care, I am delighted thatthrough this work with end of life care practitioners, it is clear that the original tenetson which the guidance were based have salience beyond this context and can beapplied more widely.

The end of life care e-learning modules4 - in particular the module on assessment - arean important and complementary resource. The common core competences andprinciples for end of life care5 will also support the development of a skilled andcompetent workforce.

This guidance builds on the expertise and experience of practitioners. I would like to

thank the national steering group and the end of life care practitioners whocontributed to the work to adapt the original guidance. We must have a robust processto ensure people’s needs are assessed at the end of life and I believe that byimplementing the guidance outlined in this report practitioners will be able to achievethis and in so doing enhance quality of care.

Professor Alison RichardsonClinical Professor of Cancer Nursing and End of Life CareConsultant to National Cancer Action Team on Holistic Needs Assessment

Southampton University Hospital TrustUniversity of Southampton

4 http://www.e-lfh.org.uk/projects/e-elca/index.html5 Common core competences and principles for health and social care workers working with adults at the end of life.

National End of Life Care Programme, Skills for Health, Skills for Care, Department of Health, 2009.


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A unified approach to holistic commonassessment helps by creating opportunities forthe individual to consider, alongside thoseinvolved in their care, all aspects affecting theirlife, and to identify and articulate their needsand priorities. It helps put that individual in

control, while prompting other agencies to takeaction when required. Through effective recordstoring and sharing, it minimises duplication,helps avoid unnecessary repeated assessments,and contributes to effective care planning.Above all, it should result in a better experienceof end of life care for the individual, promotingdignity and choice in the final phase of life.

1.2 About this guidance

This document provides guidance for holistic common assessment of the supportive and palliative care needs of adults requiring end of life care. It highlights five core areas or domainsfor holistic common assessment and sets out thecontent within each of these, so that teams canbenchmark their local processes and tools. It setsout the main features of the process - includingthe who, when, where and how - of holisticcommon assessment.

It also highlights a range of existing assessment

and planning tools, guidance and relevant policy,signposting to other resources whereappropriate.

Through this, it aims to offer an overarchingframework to enable managers and practitionersto adopt a unified approach to the assessment,recording and communicating of the individual’sneeds.

End of life care is described in this guidance as apathway moving from early identification of the

dying phase, through changes in the person’scondition and in treatments provided, to the lastdays of life. The pathway is generic, rather than

1 Introduction to this guidance

1.1 About holistic common assessment

People approaching the end of their lifefrequently have complex, wide-ranging andchanging needs. Meeting these needs requireseffective care co-ordination across boundaries,supported by strong communication betweenthe different teams involved in providing care.First and foremost, it calls for a soundunderstanding of the individual’s needs,preferences and priorities for care. Effectiveholistic assessment processes are key to this: theneed for these was identified in NICE’s Guidanceon Cancer Services: Improving Supportive andPalliative Care for Adults with Cancer6,published in 2004. Since then, the national Endof Life Care Strategy (for England)7 highlightedthe importance of ensuring all adults requiringend of life care receive holistic assessment -encompassing physical, psychological, social,cultural, environmental, spiritual and financialneeds - to support delivery of high quality careduring this last phase of life.

Nevertheless, challenges persist in deliveringholistic assessment. Some individuals’ needs arenever adequately assessed; some assessment isonly partial, restricted to physical needs alone,for example. Other individuals undergo repeatedassessments of the same aspects by differentprofessionals in different settings, withinformation rarely shared between the teams.This can be tiring and frustrating for individualsand their families at a point when energy islimited and time is precious; it is also a poor useof NHS and social care resources.

6 Guidance on cancer services: improving supportive and palliative care for adults with cancer. National Institute of ClinicalExcellence, 2004.

7 End of Life Care Strategy - promoting high quality care for all adults at the end of life. Department of Health, 2008.3


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published proformas or ‘tools’ designed forholistic common assessment of supportive andpalliative care needs for adults (although somehave been piloted, for example the NorthernIreland Holistic Assessment Tool, which iscurrently subject to evaluation). Existing

published assessment tools, such as the Pepsi-cola aide memoire and distress thermometer,assess either a more limited range of end of liferelated needs or assess in-depth a specific areaof need. Teams may wish to utilise one or moreof these existing tools as part of holisticcommon assessment, adapting andsupplementing them where required to ensurethat they cover the full range of needs listed inthis guidance.

Used in this way, the guidance can helpprofessionals and managers work together toestablish a unified approach to holistic commonassessment. This in turn should help address thechallenges caused by poor assessment and careplanning, such as unwanted treatments, lengthyhospital stays, patient/carer dissatisfaction andcomplaints. Moreover, by enabling informationon individual needs to be recorded and capturedin a more systematic way, it will contribute todata on the needs of the local population whichcan be used to aid service planning and

commissioning.

1.4 How the guidance was developed

A small national steering group was establishedto develop this guidance, with representationfrom the National End of Life Care Programme,the National Cancer Action Team, King’s CollegeLondon and the Department of Health (SeeAppendix i). The group took as its starting point

guidance on Holistic Common Assessment ofSupportive and Palliative Care Needs of Adultswith Cancer, published in January 20079 in

condition-specific. This reflects the fact thatalthough the concept of holistic assessmentoriginated in the cancer field, the core principlesof assessing an individual’s needs remain thesame whatever their condition or care setting.

1.3 Who this guidance is for and how itcan be usedThis guidance is for all health and social careprofessionals and managers who provide or co-ordinate the care of adults requiring end of lifecare. It is likely to be of particular interest tothose responsible for undertaking or co-ordinating assessment as part of end of life care,for example district nurses or specialist nursesworking in palliative care teams in thecommunity. It applies equally to generalist and

specialist palliative care settings, includingprimary care, care homes, hospices and athome.

The guidance is designed to support thosewishing to develop a unified approach to holisticcommon assessment, and can be used as a basisfor initiating dialogue between stakeholders at alocal level, for example to:

• Review local processes and tools and examinehow these are being used.

• Benchmark the content of these tools againstthe domains set out in this guidance andidentify any gaps or areas of duplication.

• Review how data is recorded and sharedbetween the different sectors, teams andprofessionals involved in end of life care.

• Assess compliance with the End of Life CareStrategy quality markers relating toassessment8 and with relevant guidance suchas NICE guidance.

The guidance is not intended to be used as anassessment tool in itself. At present, there are no

8 End of Life Care Strategy - quality markers and measures for end of life care. Department of Health, 2009.9 Holistic common assessment of supportive and palliative care needs for adults with cancer. King’s College London, 2007.


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care may have already been through a SingleAssessment Process (SAP) while under the careof social services. Holistic common assessmentaims to minimise duplication with the SAP andencourages information sharing betweensettings to avoid subjecting the individual to

unnecessary repeated assessments. Moreinformation on the SAP can be found atwww.cpa.org.uk/sap/sap_home.html.

Common Assessment Framework: Thisframework, which is currently being developedby the Department of Health, is a genericapproach to assessing the health, social care andwider support needs of adults. The CommonAssessment Framework (CAF) is not anassessment tool itself: rather, it enables a core

set of information to be shared electronicallyacross boundaries. CAF is expected to have ninecore domains. There is a degree of commonalityin the terminology and in the information whichcan be elicited from holistic common assessmentand CAF. More information about CAF can befound at www.dhcarenetworks.org.uk/CAF.

Mental Capacity Act: By assessing cognitivestate (part of the physical and psychologicalwell-being domains), holistic commonassessment may highlight issues concerning an

individual’s mental capacity. These may haveimplications for their ability to participate fully indecision making and the assessor will need totake account of the Act and best interestsdecisions.

1.6 Where next for holistic commonassessment in end of life care?Holistic common assessment is a fast-evolvingarea. Supporting its use in practice remains apriority for the National End of Life Care

response to NICE’s 2004 guidance. Subsequentwork took place with end of life carepractitioners from both health and social careperspectives to look at the practical applicationof the guidance in an end of life care context.

This work draws upon a systematic review ofassessment tools undertaken by Professor AlisonRichardson in 200610 . It also reflects theexperience of professionals using these tools inthe field.

To inform development of the guidance, theNational End of Life Care Programmecommissioned a review of current definitions of‘end of life care’ and triggers for assessment inthis phase11. References from this review are

available on the Programme website.

1.5 Relationship to other nationalpolicy initiativesThis guidance has been developed in alignmentwith other relevant national policy initiatives:

National Service Frameworks: Assessment isreferred to in a number of National ServiceFrameworks (NSFs) and in other guidance tosupport people with long term conditions, e.g.advanced kidney disease and heart failure. Suchframeworks usually describe assessment andcare planning in the context of a specificcondition and may give advice on specialistassessment. As this guidance on holisticcommon assessment is generic, rather thancondition-specific, it should be considered inconjunction with the relevant NSF and/orcondition-specific guidance.

Single Assessment Process: An individual

coming into a health setting for their end of life

10 Patients’ needs assessment in cancer care: a review of assessment tools. Richardson A, Medina J, Brown V, Sitzia J.Supportive Care in Cancer. 15: 1125-1144.

11 End of life care definitions and triggers to assessment: summary of literature. O’Connor S J on behalf of the National End ofLife Care Programme, 2008.

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A full range of resources can be found on theNational End of Life Care Programme websitewww.endoflifecareforadults.nhs.uk.

1.8 Guide to terms used

End of life care is care that helps all those withadvanced, progressive, incurable illness to live aswell as possible until they die. It enables thesupportive and palliative care needs of bothpatient and family to be identified and metthroughout the last phase of life and intobereavement. It includes management of painand other symptoms and provision ofpsychological, social, spiritual and practicalsupport (Department of Health).

Palliative care is an approach that improves thequality of life of patients and their familiesfacing the problems associated with life-threatening illness, through the prevention andrelief of suffering by means of earlyidentification and impeccable assessment andtreatment of pain and other problems, physical,psychosocial and spiritual (World HealthOrganisation).

Supportive care helps patients and their

families cope with [their condition] and itstreatment (National Institute for Clinical Excellence).

2 The process of holisticcommon assessmentThe holistic common assessment process offersan opportunity to explore the individual’s widerneeds and identify what action should be takento meet them. There should be a strong focusthroughout on supporting choice and decision-

Programme and a range of initiatives areunderway including:

• A pilot project in partnership with SHA Eastof England to develop and test use of anassessment pathway for end of life care.

• Sharing examples of good practice inimplementing holistic common assessment;propagating learning from initiativeselsewhere in the national and internationalcommunity to develop tools and approachesfor holistic common assessment, which arespecific to end of life care.

• Development of end of life care localityregisters, pilot sites for which are currentlytesting a range of IT systems to supportinformation sharing.

A review of implementation of this guidancewill be carried out within 18 months ofpublication.

1.7 Notes on this guidance

The remainder of this guidance has beenstructured into 2 sections:

• Section 2 describes the process of assessment

and outlines recommended next stepsfollowing assessment.

• Section 3 outlines the assessment content,setting out five domains and the items whichshould be assessed within these.

Appendices direct readers to other relevantresources and initiatives. A guide to thedifferences between general care planning anddecisions made in advance is also included as anappendix.


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making and on helping people identify andachieve the outcomes they want for themselveswherever possible. This section sets out thewho, when, where, and how of carrying outholistic common assessment, to guideprofessionals in establishing the right systems to

deliver it. Nevertheless, the individual remains atthe heart of this process - assessment should be‘concerns-led’ and the process flexible enoughto respond to the individual’s changingcircumstances.

2.1 Who should be assessed?

All people who have been recognised to beapproaching the end of their life should be

offered this assessment, whatever the caresetting.

This guidance is for the assessment of the needsof the individual requiring end of life careand has not been designed to assess the needsof carers. However, the process of holisticcommon assessment may also highlight carers’needs, which may require further assessmentand action.

2.2When should the assessment take

place?

The End of Life Care Strategy recommends thatassessment should be seen as a continualprocess, an integral part of the care providedover the course of the end of life care pathway,as illustrated in figure (1). Holistic commonassessment forms part of this continualassessment process; clinical practitioners andmulti-disciplinary teams will need to assess andreassess along the pathway.

14 http://www.connectingforhealth.nhs.uk15 http://www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/InformationForSocialCare/DH_4075306

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Figure 1: End of Life Care Pathway

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assessment is completed within a reasonablyshort time. Finally, while holistic commonassessment is often an empowering and positiveprocess, it is vital to be sensitive as deathapproaches: professional discretion should beused when determining how much assessment

an individual can reasonably be expected toundergo.

2.3 Where should the assessment takeplace?An assessment may be carried out in anyphysical setting that ensures comfort andprivacy. The place of assessment will bedetermined by the person’s care setting at thatkey point in their pathway.

2.4 Who should carry out theassessment?The individual’s health and social care team ateach key point is responsible for ensuring thatthe assessment takes place. For continuity ofcare, it is often helpful to have a single teammember responsible for assessing thatindividual’s needs. At the very least there shouldbe - for each individual - a team memberdesignated with responsibility for ensuring thatthe assessment is carried out.

Teams should use the following principles whenselecting an assessor:

• The assessor should be a professional with anappropriate level of knowledge of thecondition, its symptoms, treatment and likelyprognoses.

• The assessor should have reached an agreedlevel of competence in key aspects of theassessment process. Skills for Health and Skills

for Care have developed end of life carecompetences which include assessment12.

Ideally, structured holistic assessments will beundertaken at each of the following key pointsin the individual’s care pathway:

• Identification of the end of life phase.• The point at which dying is diagnosed.

• At any other time that the individual mayrequest.

• At any other time that a professional carermay judge necessary.

In some cases, some of the key points mayfollow one another quickly in time and thetransition from one phase to another may beimprecise. The National End of Life CareProgramme website signposts to tools andresources including triggers to help professionals

identify the various stages in the pathway.

Unnecessary repeated assessments by differenthealth and social care staff should be avoided.For example, people with cancer and/or longterm conditions such as diabetes or multiplesclerosis may have undergone an ongoingprocess of assessment and care planning overthe course of their condition; assessment at endof life should aim to build upon this rather thansimply duplicate it.

In all cases, information gathered throughprevious assessments should be passed on aspart of the handover between professionalsinvolved in the individual’s care.

Whilst best practice would suggest that a fullholistic assessment should be completed in asingle session, this may not always be practicalor appropriate. The assessor should follow theseprinciples: (a) the timing and pacing ofassessment is sensitive to the individual’s needs

and circumstances; (b) priority needs areidentified at an early stage; (c) the whole

12Common core competences and principles for health and social care workers working with adults at the end of life. NationalEnd of Life Care Programme, Skills for Health, Skills for Care, Department of Health, 2009.

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Discussions about holistic needs, particularly inrelation to spiritual well-being and life goals,may lead naturally into conversations aboutadvance care planning. Assessors will need to beprepared for this possibility and ensure thatsystems are in place to trigger the process of

advance care planning where appropriate.

3 Steps followingassessment3.1 Recording, storing and sharinginformation from the assessmentHealth and social care teams should agreestandard processes for the recording, storingand sharing of assessment information.

Assessment records should be stored and sharedin line with the 12 commitments of the NHSCare Records Guarantee15 and with theprinciples set out in social care informationgovernance16.

Recording

Each assessment should be recorded. Anassessment record should capture:

• All identified needs.• Relevant discussion relating to identifiedneeds.

• Overall conclusions of the assessment and theevidence behind them: conclusions should beagreed with the individual and any majordifference of opinion recorded.

• A summary of the principal findings andactions agreed with the individual. Thisimportant document helps communicationand care co-ordination.

These are supported by the development ofNational Occupational Standards13 in this areaand an e-learning project, End of Life Care forAll (e-ELCA)14, which provides training andeducation to health and social careprofessionals working in end of life care. The

e-ELCA modules include a range of sessionscovering assessments. Teams may wish torefer to these.

• The selection should be in accordance withany preferences the individual has expressedfor communicating with particularprofessionals.

• The assessor should have access to up-to-dateinformation about local health and socialservice providers, referral criteria and supportservices.

• The assessor will need to have anunderstanding of advance care planning andof the distinction between this and holisticcommon assessment.

2.5 Preparing to carry out anassessmentAssessment should not take more than 30minutes on average.

Prior to assessment, the assessment process

should be described to the individual and theirconsent obtained. Self-assessment is a usefulway to identify issues of particular concern tothe individual for subsequent discussion with theassessor. People should therefore be offered theopportunity to self-assess. Domains suitable forself-assessment are highlighted in Section 4.

The assessor should endeavour to reviewprevious assessments, which may include thosefrom other health or social care settings, andtake into account needs identified within them.

13A framework of national occupational standards to support common core competences for health and social care workersworking with adults at the end of life. National End of Life Care Programme, Skills for Health, Skills for Care, Department ofHealth, 2009.

14http://www.e-lfh.org.uk/projects/e-elca/index.html15http://www.nigb.nhs.uk/guarantee/2009-nhs-crg.pdf16http://www.dh.gov.uk/en/Managingyourorganisation/Informationpolicy/InformationForSocialCare/DH_4075306


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Assessors should have routine access to thesummaries of any previous assessment. Theyshould also be able to access further informationfrom the full records of such assessments wherethese may be relevant to the current care of theindividual. This information may include any

other pertinent assessments including specialistassessments.

3.2 Taking action

The assessor should work with the individual toidentify solutions or actions and to co-produce acare plan. The assessor should identify and focuson what the individual can do for himself orherself in the first instance. Where more help is

required, the assessor should establish whetherthis can be provided by the individual’s currenthealth or social care team.

If referral is needed, the assessor should:

• Agree the referral with the individual andseek their agreement to appropriateinformation sharing with the agency.

• Discuss the assessment and referral with thereceiving agency including, if appropriate,agreeing a lead professional.

• Where there is agreement, share the contentof the assessment (assessment summary) withthe agency.

The assessment may trigger other formalplanning or assessment processes, such ascontinuing healthcare assessment. Informationgathered from the holistic common assessmentmay be transferred directly into the continuinghealthcare assessment.

NB: This guidance does not attempt to definethe specific contents of a care plan arising fromholistic common assessment. However, it is

The record of assessment should be in a formthat supports sharing both within and acrossteams and the different agencies involved in thecare of the individual. As a minimum thesummary of the assessment should be inelectronic format as part of the electronic care

record.

Storing

Detailed information from the assessmentshould be held in electronic or paper files as a‘full record’ of the assessment activity at thatpoint in time.

Arrangements for storing information shouldcomply with any local processes and

requirements.

Sharing

Assessment records may be shared with anyother member of staff providing health or socialcare for the named individual, following theprinciples of ‘role-based access’, i.e. assessorsshould share with another professional only asmuch as that person needs to know to play theirpart in the individual’s care. Consent should besought from the individual being assessed for

their records to be shared. In instances wherethe individual does not give consent the assessorshould discuss with the individual the possibleeffect this may have on their care and thealternatives available to them.

Generally speaking, the ‘assessment summary’should be shared between multi-professionalteams and across agencies as required, subjectto the individual’s consent. A copy of thisassessment summary should also be given to the

individual.

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Some items are relevant to more than onedomain. Physical problems for example mayraise psychological needs. In this guidance itemsare listed only once. The assessor should usetheir professional judgement with regards to theassessment of cross cutting items: care should

be taken to avoid repetition; where possible, thedifferent needs (physical, psychological, social,spiritual) arising from a particular issue should beassessed at the same time.

The assessment should largely follow aconversational style. Above all, it should supportthe individual to identify and articulate their ownneeds.

Notes on the domains

The guidance for each domain sets out thefollowing:

Points to note: These are guidance notesspecific to the domain.

Questioning sequence: This is the suggestedsequence of questioning for each item in thedomain. This sequence is designed to elicitinformation in a consistent way and to ensurethat all information relevant to each potentialneed is obtained.

List of items: This is the list of items - eachrelevant to a distinct potential need - that fallwithin the scope of the domain.

Item-specific guidance and prompts: Otherthan items that are wholly self-evident, eachitem is supported by further guidance andconversational ‘prompts’ to help the assessor.Prompts should be used judiciously, not

exhaustively; they should not be used as lists ofsub-items for assessment.

anticipated that the structure and contents ofthe care plan, being largely free-text, will fit withexisting practice and with the CommonAssessment Framework. The guidance forcommissioners for supporting people with longterm conditions17, which encompasses end of

life care, provides a comprehensive descriptionof personal and integrated care planning.

4 Assessment contentThe holistic common assessment is divided intofive ‘domains’:

• Background information and assessment

preferences• Physical needs• Social and occupational needs• Psychological well-being• Spiritual well-being and life goals

The assessment at each key point should coverall of these domains. However, as the personmoves along the end of life care trajectory, thedepth to which each of the domains is coveredmay change depending on individualcircumstance - for example occupational needs

may become less relevant and spiritual needsmore so. Assessment within each domain shouldbe ‘concerns–led’, focusing upon items ofparticular concern to the individual.

The order of domains within an assessment‘session’ is important. Some domains, such aspsychological well-being and spiritual well-beingand life goals, require a degree of trust andunderstanding between the assessor and theindividual. These should usually be addressed

towards the end of the assessment, once arapport has been established.

17Supporting people with long term conditions: commissioning personalised care planning. Department of Health, 2009.


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Domain 1: Background information andassessment preferences4.1

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Items are grouped into two sub-domains:A. Background informationB. Assessment information and preferences

1.1 Family name

1.2 Forename/s

1.3 Preferred name

1.4 NHS number

1.5 Date of birth

1.6 Gender

1.7 Ethnicity

1.8 Faiths/beliefs

1.9 Occupation

1.10 Relationship status

1.11 Home address

1.12 Telephone number

1.13 Next of kin

1.14 Carer

1.15 Dependants

1.16 Preferred language forwritten communication

1.17 Preferred language for spoken

communication

1.18 Interpreter required?

1.19 Name of GP

1.20 Name of GP practice

1.21 Hospital consultant

1.22 Other professionals involved in care

1.23 Relevant clinical history andpre-existing morbidities

1.24 Allergies

1.25 Treatment plan

1.26 Current medication andcomplementary therapies that havebeen used or are being used

1.27 Diet

SUB-DOMAIN A: BACKGROUND INFORMATION

POINTS TO NOTE In preparation for the first assessment, the assessor should record backgroundinformation from the person’s care record. These items should not then require complete re-assessment at each key point, but the assessor should ensure identification and recording of anysignificant changes that have occurred since the previous assessment.

Assessment information and preferences should be reviewed and recorded at each assessment.


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ITEM GUIDANCE FOR ASSESSOR

1.28 Alcohol intake

1.29 Exercise

1.30 Smoking

1.31 Admissions since last assessment

1.32 Support/care currently received

1.33 Preferred priorities for careNB Only to be elicited ifassessment leads ontoadvance care planningand preferred prioritiesfor care have beendiscussed.

1.34 Information needs andpreferences

SUB-DOMAIN B: ASSESSMENT INFORMATION AND PREFERENCES

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The assessor should have copies of previous holistic assessments on file,should be aware of the needs identified in previous assessments, andshould be aware of actions taken to address those needs.

Document the key point at which the assessment is being undertakenor the trigger for assessment (e.g. professional concerns, personinitiated, carer initiated).

Record where this assessment is taking place, i.e. the name of theorganisation, hospital, ward, care home, home.

The assessor should determine the person’s:• Communication ability (hearing, vision, speech/voice/oral

communication, use of alternative communication, language issues).• Cognitive ability (understanding, memory).• Mental capacity.

Cultural sensitivities.

Current health/fatigue.

The assessor should determine the person's willingness to take part inassessment and also their willingness to ‘self report’ where possible.This discussion should identify any cultural sensitivities regardingassessment, identify any reservations the person might have andgenerally identify any other barriers to assessment.

The person should give clear verbal consent to future assessments andthis consent should be documented.

The assessor should ask the question.

Should a carer assessment be undertaken? And if yes refer carer forassessment.

1.35 Date of lastassessment

1.36 Date of thisassessment

1.37 Name, role andcontact details ofassessor

1.38 Key point/trigger

1.39 Site of thisassessment

1.40 Persons ability toparticipate in face-to-face assessment

1.41 Sensitivities

regardingassessment

1.42 Willingness forassessment andconsent

1.43 Preference for familymember or carer tobe present atassessment?


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Introductory question to prompt person to identify physical needs ofmost concern to them.

Introductory question to prompt person to identify the main adverseeffects of treatments received and elicit individual’s experience of thosetreatments.

Feeling tired, exhausted.

Feeling physically weak.

Recent falls. Loss of balance.

Assessors should follow the ‘PQRST’ question sequence (Provokes,Quality, Radiates, Severity, Time).

Problems sleeping at night. Sleeping in the daytime.

Swollen limbs. Heat. Erythema.

Shortness of breath. Tracheostomy management.

POINTS TO NOTE The items in this domain may be assessed in any order.

The list of items in this domain is quite extensive and there may be a concern that drawingattention to potential problems might cause worry for some people. Therefore, prior to assessmentpeople should be reassured that the purpose of assessment is to make certain that all potentialneeds are identified; similarly, it would not be expected that all symptoms listed will be experiencedby an individual. In addition, people may have concerns or fears regarding physical symptoms, evenin the absence of the symptom, which should be considered within the psychological domain.

This domain lends itself to individual self-assessment prior to discussion with a health professional.

Questioning sequence1. Elicit a description of the problem: onset/ cause, duration, intensity, consistency, natureand rate of change

2. Ascertain the effect of the problem uponthe individual’s normal activities/function

3. Elicit the history of management of theproblem, including treatments tried, use ofequipment and extent of self-care

4. Review with the person whethermanagement/treatment is helping

5. Ascertain further needs6. Explore related fears or anxieties

ITEM GUIDANCE FOR ASSESSOR AND SUGGESTED PROMPTS

2.1 Priority physicalneeds

2.2 Adverse effects oftreatments (iftreatments havebeen received)

2.3 Fatigue

2.4 Weakness

2.5 Balance problems

2.6 Pain/alteredsensation

2.7 Sleep disturbance

2.8 Swelling/oedema

2.9 Breathing

Domain 2: Physical well-being4.2

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Ulcers. Soreness. Thrush. Swelling. Dryness. Condition of teeth. Problems

with dentures.

Problems with eating or drinking. Change in taste of food, metallic taste.Indigestion. Change in appetite. Alternative feeding methods.

A sensation of food sticking in throat. Coughing or choking when eatingor drinking. A wet voice quality after drinking. Pain on swallowing. Theneed to clear the throat after taking a drink or food. Finding dryer foodmore difficult to swallow. Increased breathlessness when eating ordrinking.

Coughing. Coughing up phlegm. Coughing up blood.

Weight loss or gain over past 3-6 months.

Feeling sick. Being sick. Nausea or vomiting anticipatory to clinic visits ortreatment.

Dryness. Itching. Pressure sores. Skin integrity. Hair loss. Jaundice.

Smell. Discharge. Fistula. Pressure sores.

Fever. Hot flushes. Sweating. Night sweats. Cold shivers.

Problems passing urine. Blood in urine. Incontinence. Needing to urinatemore frequently than usual. Burning. Itching. Discharge. Cathetermanagement.

Changes in bowel habit. Diarrhoea. Incontinence. Constipation. Passingblood or mucus.

Hearing problems. Speech problems. Visual problems. Memory loss.Problems understanding. Confusion or disorientation.

‘Rounding up’ concluding question to ensure any other symptoms orconcerns are identified.

2.10 Oral health

2.11 Eating anddrinking/nutrition

2.12 Swallowing

2.13 Coughing/sputum

2.14 Weight/weightloss

2.15 Nausea andvomiting

2.16 Changes toskin/hair/nails

2.17 Wound care

2.18 Temperaturedisturbance

2.19 Urinary

2.20 Bowel

2.21 Cognitive

2.22 Any othersymptoms orconcerns?

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Needs related to housing/person’s home• Type of accommodation. Tenure of accommodation. Living alone?

Ability to access home (e.g. stairs, unmade path, obstructions).Condition of home (e.g. heating, security, lighting). Access tobathroom and toilet (upstairs or downstairs). Comfort at home. Would

person prefer to be staying somewhere else?

Ability to prepare food and drink.

Ability to feed self independently.

Needs related to key transfers in the home• Getting in and out of bed. Getting on and off chairs. Getting on and

off toilet. Getting into and out of the bath and shower.

Needs related to ability to care for self• Ability to wash and dress, personal hygiene and toilet, manage

medication. Home care medical equipment and supplies. Educationabout home care.

Needs related to ability to carry out household duties• Ability to do shopping, errands. Housekeeping (e.g. home

maintenance, cleaning, laundry, gardening, care for pets.)

Needs related to ability to mobilise independently indoors andoutdoors• Mobility problems. Walking. Stairs. Transport issues. Getting in and

out of a car. Ability to drive. Getting on and off public transport. Risk

of falls. Needs for mobility equipment. Wheelchair use.

Needs related to ability to relax and rest• Person’s ability to relax, sleep, ‘switch off’.

Items are grouped into foursub-domains:A. Managing at home and in the

communityB. Work and financeC. Family and close relationshipsD. Social and recreational

POINTS TO NOTE The items in this domain may be assessed in any order.

Questioning sequence1. Ascertain the person’s general situation in relation to

the item: How are things for you in relation to …?2. Ascertain any limits, restrictions or other problems in

relation to the item: What is limiting/restricting you inrelation to…?

3. Ascertain the support that the individual currently has,and whether this is adequate, consistent and reliable:What support do you currently have to help with …?

4. Ascertain additional support needs.


3.1 Where you live

3.2 Eating and drinking

3.3 Eating and drinking

3.4 Key transfers

3.5 Other personal care

3.6 Housekeeping

3.7 Getting around

3.8 Relaxing and resting

Domain 3: Social and occupational well-being4.3

SUB-DOMAIN A: MANAGING AT HOME AND IN THE COMMUNITY

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Needs related to work• Interpret ‘work’ broadly, to include paid employment, unpaid work,

voluntary work, work as a carer, educational activity.• Paid employment, unpaid work, voluntary work. Work as a carer.

Issues concerning employer, workplace relations and workmates.

Change in work patterns, inability to work.

Needs related to immediate and short-term financial security andmoney management• Immediate financial concerns, money worries. Banking and bills.

Entitlement to benefits, prescription charges, transport costs.

Needs related to future financial security and management• Long-term financial worries. Financial concerns for your family. Debt,

loans, mortgages, student fees.• Financial aspects of marital status. Inheritance planning, making a will,

life insurance. Tax issues.

Needs related to partner, family and other close relationships• Who are the important people in your life? How are you getting on

with them? What support do you need from them, and do theyprovide this? What support do they need? Is anybody dependent onyou?

• Relationship with partner, family, close friends, other important peoplein person’s life. Conflicts, communication issues.

Needs related to person’s children or children for whom theperson is carer or guardian• Talking to children about death. School life and the children’s friends.

Children as carers. Children’s emotions, care arrangements andpractical arrangements. Children coping? Contact with other parent,significant family.

Needs related to sex life and sexual relationships• Need for physical contact/closeness. Difficulties in sex life, sexual

relationship/s. Worries. Sexual difficulties caused by health status and

other symptoms or problems. Difficulties as a side-effect of treatment,loss of libido, sexual activity causing pain.

Needs related to social life and social relationships• Restrictions on social life caused by health status and treatment.

Communication difficulties. Experienced changes in other people’sattitudes. Feeling isolated. New social groups and friendships.Community support groups, church groups, organisations, clubs.

Needs related to recreation and leisure• Things you have had to give up. Things you would like to do. Holidays.

Active recreation (e.g. sports, exercise, walking, swimming). Passiverecreation (e.g. theatre, TV). Filling your day. Hobbies. Interests.

SUB-DOMAIN D: SOCIAL AND RECREATIONAL

SUB-DOMAIN C: FAMILY AND CLOSE RELATIONSHIPS

SUB-DOMAIN B: WORK AND FINANCE

3.15 Social interactions

3.16 Recreation andleisure

3.9 Work issues

3.10 Day-to-dayfinances

3.11 Planning for thefuture

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3.12 People closeto you

3.13 Children

3.14 Sexual relations


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Domain 4: Psychological well-being4.4

POINTS TO NOTE This assessment relates to the Level 1 psychological assessment defined inNICE’s guidance on supportive and palliative care for adults with cancer18. As such, its purpose isrecognition of psychological needs, leading to effective information provision, compassionatecommunication and general psychological support. Triggers for specialist psychological supportservices need to be consistent with local referral criteria.

Level 1 assessment does not include formal screening for psychological distress; the use ofobjective assessment components (e.g. numerical rating scales, Distress Thermometer) is thereforeoptional.

Items related to cognition form part of the physical well-being domain. These items should be

assessed prior to - and inform - the assessment of psychological needs.

Some items within this domain (for example those also found in the Distress Thermometer) lendthemselves to individual self-assessment prior to discussion with a health professional.

The items in this domain should usually be assessed in the order below. The assessment shouldstart with an opening, exploratory question that invites the individual to identify any concerns oremotional issues.

Assessors need to be particularly sensitive to cultural differences when asking questions related to

mental health.

Questioning sequence1. Elicit a description of the problem:

duration, intensity, consistency, nature andrate of change

2. Ascertain the history of the problem: Is [theproblem] usual for you?

3. Ascertain the personal impact of theproblem on the individual: What is the

effect on you?4. Ascertain the effect of the problem onothers

5. Ascertain the strategies used by theindividual to manage the problem,including treatments tried (in particular, self-care): What is your way of managing?

6. Review whether management/treatmentis helping

7. Ascertain further needs: Does anythingmore need to be done about this problem?

Do you need any help with this problem?Would you like to talk to someone about it?

19 18 Guidance on cancer services: improving supportive and palliative care for adults with cancer. National Institute of ClinicalExcellence, 2004


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An opening, introductory, exploratory question that invites theperson to identify any ‘emotional issues’.• Is anything worrying you? Do you have any concerns, emotional

concerns, distressing issues?

This item should be explored with the use of at least twoquestions concerning mood and interest, such as:• During the last month, have you often been bothered by feeling down,

depressed, hopeless?• During the last month, have you often been bothered by having little

interest or pleasure in doing things?• It may be useful to use a visual rating scale for this item, such as the

‘Happy to Sad faces’ scale.• Prompts: feeling ‘emotional’, feeling sad.

Anxiety. Worry. Panic. Panicky. Fear. Restlessness.

This item should be explored in three parts:1. Explore individual’s knowledge/understanding of disease/treatment.2. Identify unresolved concerns.3. Check if individual can look and plan ahead.

Prompts: exhaustion, emotional exhaustion, sleeping, sleep disturbance.

This domain should end on a positive note. Identification of the person’sareas of strength or discussing existing support may be helpful.

4.1 Opening question

4.2 Mood and interest

4.3 Anxiety

4.4 Adjustment toillness andtreatment

4.5 Strengths

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Domain 5: Spiritual well-being and life goals4.5

POINTS TO NOTE It is important to have a ‘lead in’ to this domain, meaning a couple ofpreparatory sentences that mark a shift to questions of a quite different nature from those relatedto ‘clinical’ needs. Care should also be taken when introducing this domain: those who would notregard themselves as having ‘spiritual’ needs may still have needs and wishes relating to their lifegoals, which can be explored here.

The assessor should have knowledge of a person’s cultural background/ethnic group, as this mightdetermine aspects of their spiritual care.

The wording of questions is very important in this domain, both to elicit an authentic response andto avoid causing distress or harm. Questioning in this domain should be pursued very sensitively

and some questions in this section have potential for harm if the assessor is not experienced inthese types of conversations. If the assessor feels unable to assess this domain, a referral should bemade for assessment by a specialist.

People use many different words to refer to the ‘spiritual’ aspects of their life and assessors needto be aware of alternative terms and be sensitive to people’s preferences. A number of alternativeterms are listed here, which may be taken as prompts for all items: faith, belief, personalphilosophy, religion, spirituality, personal support, inner strength, personal doctrine.

Conversations about spiritual needs and life goals may lead on to a conversation about advance

care planning (ACP). It may be appropriate to explore some aspects of advance care planning, forexample preferred priorities for care (PPC), advance decisions to refuse treatment (ADRT) andlasting power of attorney, however this is a separate process and the assessor will need to beaware of the differences. Please see Appendix iii for a full explanation of the differencesbetween general care planning and decisions made in advance.

Questioning sequenceConversational style guided by professional judgement. However, the assessment should start withan introductory, exploratory question to determine the individual’s existing faith/belief, be it‘religious’ or non-religious, conventional or unconventional.

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22

An introductory, exploratory question to determine the person’s existingfaith/belief, be it ‘religious’ or non-religious, conventional orunconventional.

Identify the person’s worries related to spiritual well-being, andthe challenges they perceive.• Impact of diagnosis or illness on faith. Coping with impact of diagnosis.

Identify practical, support or other needs related to religion or

spiritual matters.• Religious items (e.g. religious texts or books, prayer mat, religiousobjects, holy water).

• Someone to speak to: faith leader or minister (e.g. minister, chaplain,vicar, priest, imam, rabbi, spiritual leader, church leader), or otherperson.

• Help. Things to help you practice. Prayer. Prayer with other people orfamily. Chapel. Prayer room. Space to pray. Quiet room. Privacy. Privatespace. Ablution.

Practical, support or other restrictions related to person’s culturalor ethnic background, or belief system.

• Requirements. Restrictions. Diet. Medicines. Treatment products (e.g.blood products). Transplantation.

Person’s concerns or desires regarding a ‘goal’ they want toachieve in their life, such as attending a forthcoming wedding.• Important occasions. Family gatherings. Holidays. Big events.

NB: it is possible that discussions around advance care planning mayoccur at this point. Please see Appendix iii for a full explanation ofthe differences between general care planning and decisions madein advance.

5.1 Faith/ belief

5.2 Worries andchallenges

5.3 Needs related to

spiritual well-being

5.4 Restrictions relatedto culture or belief

system

5.5 Life goals



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Appendix (i) National Steering Group(i)

Professor Alison Richardson - Clinical Professor of Cancer Nursing and End of LifeCare, Southampton University Hospital Trust,University of Southampton

Justine Palin - Associate Director, NationalCancer Action Team

Claire Henry - Director, National End of LifeCare Programme

Anita Hayes - Deputy Director, National End ofLife Care Programme

Claire Morris - Project Manager, Holistic NeedsAssessment

Sue Dewar - Primary Care Clinical Lead NHS Improvement, End of Life Care Clinical Lead forNHS West Sussex

We would like acknowledge our thanks tomembers of the Palliative Care NurseConsultants Group and individual health andsocial care staff for their review and comments.

This guidance will be reviewed in 18 monthsfollowing further learning and application inpractice.

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24

Appendix (ii) Resources(ii)

Other publications of interest include:

Carers at the heart of 21st century families andcommunities (Department of Health, 2008)http://short.to/19r02

Knowledge Set for End of Life Care (Skills forCare, 2010)http://short.to/19r05

Making decisions – a guide for people whowork in health and social care: Helping peoplewho are unable to make some decisions forthemselves (Department for ConstitutionalAffairs, now part of the Ministry of Justice,2006)http://is.gd/9KIQe

Guidance on Cancer Services: ImprovingSupportive and Palliative Care for Adults withCancer (National Institute for Clinical Excellence,2004)http://www.nice.org.uk/CSGSP

Holistic common assessment of supportive andpalliative care needs for adults with cancer(King’s College London, 2007)http://bit.ly/cm0RQk

The National End of Life Care Programmeprovides a range of tools and guidance tosupport holistic common assessment on itswebsite.

The following Programme related publicationscan be downloaded from the Publicationssection of the website:http://www.endoflifecare.nhs.uk/eolc/eolcpub.htm

• Advance Care Planning - A Guide for Healthand Social Care Staff (2007)

• Advance Decisions to Refuse Treatment - AGuide for Health and Social Care Staff(2008). (This includes a comprehensive list ofresources and guidance relating to theMental Capacity Act 2005.)

• Common core competences and principlesfor health and social care workers workingwith adults at the end of life (2009)

• A framework of national occupationalstandards to support common corecompetences for health and social careworkers working with adults at the end oflife (2009)

• End of Life Care Strategy - promoting highquality care for all adults at the end of life(2008)

• Planning for Your Future Care - A Guide(2009)

The website also links to useful tools such as theLiverpool Care Pathway, Gold StandardsFramework and e-learning for health modules.

This range of documents, tools and links is beingfurther developed at present and will beavailable on the Programme’s new website laterin 2010. It will include details of initiativeselsewhere in the national and international endof life care community to develop and pilot

approaches to holistic common assessment.


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For further information

www.endoflifecareforadults.nhs.uk• Advance Care Planning - A guide for health

and social care staff• Advance Decisions to Refuse Treatment - A

guide for health and social careprofessionals

• Planning for Your Future Care - A guide forpatients

• Practical Guidance for Best Interests Decision

Making and Care Planning at End of Life

www.resus.org.uk/pages/dnar.pdf• Decisions relating to cardiopulmonary

resuscitation

www.ncpc.org.uk/publications• The Mental Capacity Act in Practice• Good Decision Making - The Mental Capacity

Act and End of Life Care

www.dca.gov.uk/legal-policy/mental-capacity/publications.htm• Mental Capacity Act - Information booklets

http://www.publicguardian.gov.uk/mca/code-of-practice.htm• Mental Capacity Act - Code of Practice

www.rcplondon.ac.uk• Concise Guidance to Good Practice - Advance

care planning

Acknowledgements - produced with the helpand support from Simon Chapman (NationalCouncil for Palliative Care) and Prof. ClaudRegnard (St. Oswald's Hospice and Newcastlehospitals NHS Trust, Newcastle). Sheila Joseph(National End of Life Care Programme).

Advance care planning (ACP) is a process ofdiscussion between an individual and theircare providers irrespective of discipline.

The difference between ACP and planning moregenerally is that the process of ACP is to makeclear a person’s wishes and will usually takeplace in the context of an anticipateddeterioration in the individual’s condition in thefuture, with attendant loss of capacity to make

decisions and/or ability to communicate wishesto others. This may lead to making an advancestatement, an Advance Decision to RefuseTreatment (ADRT), a Do Not AttemptCardiopulmonary Resuscitation (DNACPR)decision, or other types of decision (such asmaking a Lasting Power of Attorney).

With the patient’s permission, all of thoseconcerned with the patient’s care and well-beingshould be kept informed of any decisions whichimpact upon the patient’s care. All care requires

an ongoing, continuing and effective dialoguebetween the patient, carers, partners andrelatives. This is essential to inform general careplanning, and is necessary to elicit any decisionsthe patient wishes to make in advance, and tocheck whether those decisions have changed.However, general care planning is not the sameprocess as making decisions in advance. Thisleaflet clarifies the differences between generalcare planning, and three decisions that can bemade in advance: advance statements, ADRT

and DNACPR decisions.

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Appendix (iii) The differences between generalcare planning and decisions made in advance(iii)


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Notes

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D e s i gn e d b y : www.f ur n e r c omm uni c a t i on s . c o. u

Produced in partnership with the National Cancer Action Team, 2010.

Documents

l -NHS EoLC Programme Holistic Common Assessment Document 2010