derbyshire end of life care guidance - dchs home · consistent with recommendations in the nhs end...

Derbyshire End ofLife Care Guidance:

A pathway for supportingpeople in the last year of life

NHS Derbyshire County and NHS Derby City

38559 End of Life Care 16pp:Talking Point News Apr07 19/7/10 10:00

2 Derbyshire End of Life Care Guidance

Contents• Introduction

• Supportive care flow charts - colour coding

• Green supportive care/Prognosis of less than 1 year

• Advance Care Planning, Information Prescriptions

• Amber supportive care/Prognosis of less than 6 months

• Amber supportive care/Prognosis of a few weeks

• Red supportive care/Prognosis of less than one week

• Care After Death, Bereavement Care, Continued Learning

• Additional services, Specialist Palliative Care, Coordination of Care

• Standards, Audit

Appendices 1. GSF Prognostic Indicator (adapted GSF)

2. Breaking Bad News

3. Palliative care read codes

Glossary

References and Web Links

AcknowledgementsWe would like to thank NHS Nottinghamshire County, NHSNottingham City, NHS Bassetlaw and Local Authorities for kindlyallowing us to reproduce this guidance in Derbyshire. We would alsowish to acknowledge the support and advice of the many localprofessionals from across the Derbyshire health and social carecommunity who contributed their views in respect of this localisedversion, and in particular members of the following:

Advance Care Planning project team,

EOL Team,

EOL Programme Board,

EOL Clinical Reference Group,

Patient & Public Involvement group.

Re-produced in partnership between NHS Derbyshire County, NHS Derby City, and Local Authorities


A pathway for supporting people in the last year of life 3

IntroductionEnd of life care is the responsibility of all health andmany social care providers that care for:

• People with less than one year to live

• People with long term progressive eventually fatal illness’

• People diagnosed with the condition from which theywill eventually die. These include long term conditions, organ failure, cancer, cerebral-vascular illness and dementia.

The provision of end of life care involves palliative andsupportive care where the goal is achievement of thebest quality of life for patients and their families. Arange of people from informal carers to others withmore specialised skills such as medical, nursing andallied health and social care professionals provides this.The focus of palliative care is teamwork, providingsupport whatever the setting whether in people’s ownhomes, hospital, and hospice or care homes. In relationto place of death, national research demonstrates adisparity between patients preferred place of death, andthe actual place of death. Whilst over 50% wouldprefer to die at home this is only achieved forapproximately 20% of people whatever the cause ofdeath.

Choice has a crucial role in health and social care serviceprovision, and for people nearing the end of life.Achievement of choice provides an indication of thequality of services available to support the individual’spreference. Enabling choice in regard to preferredpriorities for care and preferred place of death can havea positive impact in bereavement, promoting health andthe well being of all involved. Also by matching needwith resources it is hoped that services can be moreeffectively and efficiently delivered. A minority ofpatients need admission to specialist services such ashospitals or hospices if good care is achieved in thecommunity. Choice should be irrespective of diagnosis,ensuring equal opportunity for all those whereverpossible to plan for end of life care.

However, managing the provision of choice for end oflife care presents key challenges. The purpose of thisguidance is to support the decision making processconcerning those aspects that contribute to quality of

life and death for those people in the last year of liferegardless of diagnosis. This document will assist allthose involved in the provision of end of life care. Theguidance also includes performance metrics that areconsistent with recommendations in the NHS End of LifeCare Strategy to provide evidence of the outcomesfollowing implementation of the pathway.

Figure 1 - DerbyshireSupportive Care PathwayFlowchartis founded on the use of evidence based practice, andthe principles of advance care planning. This is inaccordance with the NHS End of Life Care Programme,with a management plan to optimise quality of lifeusing recognised tools including:

Gold Standards Framework (GSF)www.goldstandardsframework.nhs.uk

The aim is to improve palliative care provided by thewhole primary care team by improving continuity ofcare, teamwork, out of hours provision as well assymptom management and patient, carer and staffsupport.

The Derbyshire Care Pathway for thelast years of life (introduced January2010)/Liverpool Care Pathway for theDying Patient (LCP) http://www.mcpcil.org.uk/liverpool_care_pathway

These Pathways empower health and social careprofessionals to deliver high quality proactive care todying patients and their family regardless of diagnosis.

The flowchart is colour coded using the Green, Amber,Red coding, as an alternative to using timescales whenplanning and providing care.



Figure 1



Green supportive care/Prognosis of less than 1 yearIdentifying the point when people may have a lifeexpectancy of one year is complex, especially for thosewith a non-cancer diagnosis. For many people with acancer diagnosis there is often a clear point at whichthe person moves from curative to palliative care. Forthose with a non-cancer diagnosis it is not unusual forthere to be periods of deterioration which respond wellto specific interventions. Prognostic indicators have beensuggested as a support to those clinicians making thisdecision (Appendix 1 Derbyshire adapted version)

This is a trigger for the primary healthcare team toconsider use of the “Gold Standards Frameworkfor Community Palliative Care” in managing theperson’s care.The focus is on the seven principles of:

• Communication

• Co-ordination of the person’s care

• Control of symptoms

• Continuity of care

• Continued learning

• Carer support

• Care of the dying.

At this stage in the pathway a holistic patientassessment and physical examination is completedto identify any unmet needs. In addition at this timethere should be a rigorous assessment of carer needs.The outcome of these assessments will determineappropriate action including referral to other servicessuch as specialist palliative care or long-term conditionsmanagement teams. “Carer fatigue” is a majorcontributory factor in crisis hospital admissions. One ofthe factors is the lack of appropriate and timely supportand equipment provision. Assessment should considerthe full range of respite care - at home or in a beddedfacility - and provision of assistive equipment.

Communicating assessment and care planninginformation to all those involved in the person’scare is essential. In addition to existing systems forsharing paper and electronic patient care records, theuse of a patient-held file e.g. ‘My Future Care’document should be considered at this time (*Thisdocument will be available via the End of Life pages ofthe NHS Derbyshire County website).

This document was piloted across 4 sites in the countyduring the ACP project phase (summer 2009).

Communicating information to the person aboutthe prognosis of their condition should beconsidered at this time. “Breaking Bad NewsGuidelines” have been produced by Mid-Trent CancerNetwork (Appendix 2,http://information4u.org.uk/?q=node/94) and by NorthTrent Cancer Network(http://www.northtrentcancernetwork.nhs.uk/professionals/key-documents/breaking-bad-news) to support this.

The person having these discussions should havereceived appropriate communications skills training.In acknowledging the sensitive nature of this discussionthe role and concept of a named key worker shouldbe introduced. The key worker has been defined as “Anamed professional who is ‘best placed’ to ensure theperson receives co-ordinated, holistic and timely end oflife care”. In primary care this is likely to be a memberof the community nursing and community matrons.

Methods for effective communication betweenprimary and secondary care must be established as apriority. In accordance with the General MedicalServices contract Quality Outcomes Framework section“Palliative care/Supportive care”, details concerningthese people will be added to the practice register andtheir care reviewed regularly. The Quality OutcomesFramework measures are a minimum, and additionalend of life quality standards and outcome measures arebeing developed to support further service improvementand monitoring. New standards will be introduced fromApril 2010.

*http://www.derbyshirecounty.nhs.uk



Advance Care PlanningThe single assessment process should provide relevantdocumentation for the initiation of advance careplanning. The involvement of the patient and significantothers in decisions about their care is recognised at thisearly stage of the guidance.

Advance Care Plans should be considered at thistime using relevant tools i.e. Advance Decisions toRefuse Treatment (sometimes referred to as LivingWills) www.adrtnhs.co.ukhttp://nww.derbyshirecountypct.nhs.uk/training.asp

One of the areas for discussion will be the preference ofthe person regarding delivery of care along with placeof care / death. Clearly this is a sensitive subject, againrequiring communication skills training. However, byaddressing the issue it is possible to increase thelikelihood of achieving the preferences people have fortheir future care, whether this be treatment modalitiesor place of care. By recording such details it is alsopossible to audit the outcome of care and analyse thereasons for deviation from original decisions.Advance care planning is an entirely voluntary process.Patients need access to the support of a variety ofprofessionals with appropriate communications skills tofully explore their own choices. Provision of this rangeof support could include referral for psychologicalsupport. However the patient’s Advance Care Planwould be drawn up by the patient together with theirnominated health or social care professional.

NHS Derbyshire County has recently piloted the ‘MyFuture Care’ document to be introduced as part of theACP process from April 2010 and will be avalable at:http://www.derbyshirecounty.nhs.uk

This document enables preferences to be recorded andregularly reviewed.

Information PrescriptionsAt every stage of the pathway, the informationrequirements of the patients and carer(s) must beconsidered. Examples of End of Life and Carer’sInformation Pathways are on the Mid-Trent CancerNetwork’s information websitehttp://information4u.org.uk/. The precise content of anInformation Prescription depends on individualcircumstances, but will include health and wellbeing,practical and financial advice – including entitlements towelfare and benefits - at appropriate stages.

Amber supportive care/Prognosis of less than sixmonthsAt this stage the person (regardless of diagnosis) mayapply for attendance allowance or disabilityallowance under special rules using a DS1500 form,downloadable from www.direct.gov.uk. See alsowebsite: www.macmillan.org.uk. This will ensureapplications are processed on a fast-track method. Thereshould also be further assessment regarding thecontinuing care needs of the person and considerationof application for support according to eligibility criteria.These initiatives along with other potential benefitsprovide support for the person and those involved intheir care.

Communicating information to the provider of Outof Hours care - Derbyshire Healthcare United(DHU) / and the ambulance service should beconsidered at this time using the relevant templates(Rightcare form, Special Patient Notes, EMAS End of LifeDecision Registration Form) or existing “flagging”systems. The out of hours services then ensure priorityaccess when receiving referrals for that patient. Thismay include communicating DNAR status, inaccordance with local DNAR policy.

Carer support may be further enhanced at thisstage by the judicious use of respite support. Thismay be provided in a number of ways and involve dayor residential care in hospice, hospital or care homesetting. Some providers offer respite through a sittingservice provided in the patient’s home. The mostappropriate type of respite support should be discussedand agreed with the patient, carer and healthprofessionals, including a statutory carer’s assessmentcompleted by a social worker, if this has not alreadybeen done.

Amber supportive care/Prognosis of “a fewweeks”This stage is characterised by deterioration suggestingthe patient is entering the terminal phase of theircondition. This is a trigger for reviewing advance careplans and documenting any desired changes to MyFuture Care / PPC and/or ADRT.

Further needs assessment should take place regardingthe continuing care needs of the person andconsideration of application for support according to



eligibility criteria. The framework for NHS ContinuingCare funding includes a fast track process which can beused by a senior clinician for people with a rapidlydeteriorating condition. This is appropriate for patientson the end of life care pathway who have reached the“weeks prognosis” stage.

Prescription of a ‘Just in case/anticipatory drugboxshould be considered at this stage after discussion withthe patient and carer. This ensures that there is anemergency supply of PRN (as required) subcutaneousmedication in the patient’s home in advance of anydeterioration in the patient’s ability to take medicationorally. When required these will help control anydistressing symptoms of pain, restlessness and agitation,nausea and vomiting, and respiratory tract secretionswhich may occur.

The carer’s needs should be reviewed to ensure that theappropriate type and level of support is in place toenable them to cope, especially if the patient haschosen to die at home. Information should be providedon how to access advice and support if a crisis arises.

Communicating information to DHU the providerof Out of Hours Care and the ambulance service isessential at this time using relevant templates(Rightcare form, Special Patient Note, EMAS Registrationof End of Life Decision form) or existing practice referralsystems.

Red supportive care/Prognosis of less thana weekWhen a patient is thought to be entering the last weekof life, the MDT should commence daily reviews in orderto ensure that the Derbyshire care pathway for thelast days of life / Liverpool Care Pathway for thedying patient is introduced as a mechanism formanaging the person’s care during the last days ofthe person’s life. This period of care is consistent with“care of the dying” as defined in the GSF; the focus ison the proactive management of the person’s care andall those involved at this stage.

Information should be provided to family / carers whenthe Derbyshire care pathway for the last days of life /the Liverpool Care Pathway is commenced, about whatto expect and what to do when the patient dies. As aminimum they should be provided with a leaflet such as“Coping with Dying” (LCP) or “End of Life – the Facts”(Marie Curie)

Assessment of current medication, thediscontinuation of non-essential drugs and theprescribing of PRN sub-cutaneous medication.

It is essential that DHU the provider of Out of HoursCare and the ambulance service are notified of thepatient’s status at this time using the relevantnotification forms (Rightcare form) or referral systems.

In the event of the patient dying (whatever the setting)certification of death should be carried out as soon aspossible. It is acknowledged that in some settings i.e.care homes and community hospitals nursing staff aretrained to undertake what is referred to as“verification of death”. This expedites transfer of thebody of the person, and the process of events afterdeath.

Care After DeathCompletion of Section 3 of the Derbyshire Pathway forthe last days of life LCP (Care After Death) isappropriate for all deaths, including unexpected deathswhere Derbyshire/LCP has not already been initiated.Leaflet D49 “What to do after a death in England andWales” (DWP) or local information should be providedto the next of kin.

All relevant services should be informed, includingnotification to the DHU provider of Out of Hours Care /and the ambulance service to cancel the Rightcare form,Special Patient Note / EMAS End of Life DecisionRegistration.

Bereavement CareThis guidance recognises the provision of support forthe psycho-social wellbeing of all those who arebereaved following the person’s death. The advantageof early involvement of the key worker supports thedevelopment of rapport and through continuity providessupport for risk assessment of complicated grief. Whilstspiritual support is integral throughout this guidance itmay have particular emphasis at this stage. Equally,referral to the appropriate specialist services may beconsidered necessary at this time.

Continued LearningGSF emphasise the need for continued MDT learningthroughout the process. Circumstances that shouldprompt this include unexpected deaths of patients onthe Supportive/Palliative register, deaths of patients thatdo not occur in the preferred place and feedback fromthe audit process. Use of the GSF After Death Analysistool is recommended.



Additional services tomeet individual needsSome services may be needed at any stage of thepathway according to the individual patient or carer’srequirements and circumstances. These include clinicalnurse specialist (CNS), specialist psychological support,respite care, self-help and support groups, equipmentloan services, spiritual care and specialist palliative care(SPC). Many people will access psychological, emotionaland spiritual help through their own informal supportnetworks, but the need for access to specific servicesshould be considered as part of the regular multidisciplinary team meetings.

Specialist Palliative CareReferral for specialist palliative care involvement shouldbe considered at any stage of the pathway where thereare complex physical and / or psychosocial needs.Patients may be referred to, and/or advice sought from,specialist palliative care teams, for:

• Complex pain and symptom management

• Psychological support for patients and families who are experiencing difficulty in accepting and coming toterms with the disease process

• Discharge planning (for those in hospitals) where specialist support is considered a requirement to help promote the quality of life for the patient and family

• Terminal care where specialist advice is required to enhance the comfort of the patient and family

Coordination of careThe national EoL care strategy recognises theimportance of coordinated care within the pathway. Forindividual patients and carers, this follows on fromassessment and care planning, with regular review ofneeds. The coordination of services must exist withinteams and across organisational boundaries.

Because a person’s needs may change rapidly, the abilityof services to respond rapidly and in a coordinatedmanner is essential; when the patient’s prognosis ismeasured in weeks, days matter, and when it ismeasured in days, hours matter.

Single assessment, patient-held records, GSF, named keyworkers, 24-hour help lines and patient alert systems forhospital admissions, out of hours and transport servicesall contribute to the effective coordination of care at theend of life.

StandardsThe indicators of success for implementation of thisapproach reinforce a number of principles relating tothe provision of quality palliative/supportive care:

• The equitable delivery of care regardless of diagnosis or setting

• The opportunity to make an advance plan for end of life care that reflects individual choice and preferences

• The assurance of best practice through the use of evidence based tools in all settings

• The assurances of consistency, continuity and coordination throughout this approach pathway by a named key worker.

In order to measure success in the provision of highquality end of life care, a number of quality standardshave been agreed locally:

• Actual versus expected numbers of patients on EOL Supportive/Palliative registers

• Percentage of patients on EOL registers with a documented Advance Care Plan

• Percentage of patients with a nominated key worker

• Number of completed Derbyshire Care Pathways/ Liverpool Care Pathways

• Increased number of patients supported to receive care in preferred place of choice

• Reduced numbers of inappropriate admissions into acute hospitals (and subsequent deaths in hospital)

• Percentage of patients dying in preferred place (last recorded preference).



AuditIt is strongly recommended that practices make full useof read codes relating to End of Life Care – templatescan be developed for practice use to record evidence ofcare provided according to GSF principles and End of lifepathway goals. These can be used to monitor progressagainst the above quality standards, and to provideevidence of:

• Adherence to the principles of the GSF approach

• Referral to all appropriate members of the multidisciplinary team, including palliative care specialists when necessary, supported by a care package tailored to the individual’s and carer’s needs.

Audit of completed documentation provides evidence ofthe levels of achievement of the 15 goals within theDerbyshire Pathway.

The Quality Outcomes Framework for General MedicalServices gives a high level indication of numbers ofpatients on a supportive and palliative care GP register,whose care needs are discussed by a primary caremultidisciplinary team at a minimum of three-monthlyintervals, but this should be regarded as a minimumstandard. Mortality rates indicate that, on average, thisrelates to up to 1% of the practice population.

Further measurement of the quality of care provided todying patients and their carers will come from a nationalsurvey programme of people who have been bereaved,the analysis of complaints to the NHS relating to end oflife care, and organisational self-assessment ofstructures and processes against quality standards whichare being developed to support the NHS End of LifeCare Programme.

Issue date: June 2010Next review due: May 2012



Appendix 1 Derbyshire Prognostic Indicator With acknowledgment to GP, Dr Stephen Miller

PROGNOSTIC INDICATOR GUIDE(Triggers for supportive/palliative care – modified from GSF)

1. ‘Surprise’ question: “Would you be surprised if patient died in next 6-12 months?”

2. Patient with advanced disease chooses comfort care only

3. Clinical indicators.

(b) Organ failure

(a) Cancer patients – metastatic or inoperable not responding to adjuvant/hormonal therapy

(c) Frailty/ Dementia

OTHER POSSIBLE SOURCESPatients in Residential /Nursing Homes

PARR TOOL

High input of social service support

Charleston Code.

CHF (at least two of below)NYHA III/IVRepeated hospital admissionsOptimal therapy, poor symptom control

COPD (with )FEV1 < 30% (severe disease)> 3 admissions in 12 monthsLTOTMRC grade 4/5Right heart failure

NeurologicalMND / Parkinson’s Disease withPoor symptom control and QOL

RenalCKD Stage 5 (eGFR < 15)Symptoms of renal failure, not seeking dialysis or transplant

Frailty-(with )Multiple co-morbiditiesDeteriorating Karnofsky scoreIncreasing weaknessWeight loss

Dementia-( with )Poor mobilityIncontinenceLack of meaningful communicationPhysical deterioration



NYHA Classification of Heart Failure

Class INo limitation. Ordinary physical activity does not cause fatigue, breathlessness or palpitation.

Class IISlight limitation of physical activity. Comfortable at rest.Ordinary physical activity results in fatigue, palpitation, breathlessness or angina pectoris.

Class IIIMarked limitation of physical activity. Although patients are comfortable at rest, less than ordinary activity will leadto symptoms.

Class IVInability to carry out any physical activity without discomfort. Symptoms of congestive cardiac failure are presenteven at rest. With any physical activity increased discomfort is experienced.

Medical Research Council dyspnoea scaleGrade Degree of breathlessness related to activities

1. Not troubled by breathlessness except on strenuous exercise

2. Short of breath when hurrying or walking up a slight hill

3. Walks slower than contemporaries on level ground because of breathlessness, or has to stop for breath when walking at own pace.

4. Stops for breath after walking about 100m or after a few minutes on level ground.

5. Too breathless to leave the house, or breathless when dressing or undressing

Karnofsky Performance Status

Percentage of normalperformance status

KPS (Karnofsky definitions)

100 Normal, no complaints, no evidence of disease

90 Able to carry on normal activity, minor signs or symptoms of disease

80 Normal activity with effort, some signs or symptoms of disease

70 Cares for self, unable to carry on normal activity or do active work

60 Requires occasional assistance, but is able to care for most of his needs

50 Requires considerable assistance and frequent medical care

40 Disabled, requires special care and assistance

30 Severely disabled, hospitalisation is indicated, although death not imminent

20 Very sick, hospitalisation necessary, active supportive treatment necessary

10 Moribund, fatal process progressing rapidly

0 Dead

Appendix 1 continued...



PreparationCheck the patient’s notes and talk to the team

Check who should be presentSet time aside

Set the scene and ensure privacy

What does the patient know?‘It would help me to know what you understand about your illness-how did it all start?’

Is more information wanted?‘Would you like me give you more detail about your illness?’

Give a warning shot!‘I’m afraid it looks more serious than we had hoped ‘

Allow patient to refuse information at this time‘It must be very hard to accept this?’

Explain (if requested)A narrative of events can be a useful

Elicit and listen to concerns‘What are the main things that you are worried about?’

Encourage ventilation of feelings‘How does that news leave you feeling?’

Summarise and plan‘Your main concerns at the moment seem to be…’

Offer availability and supportFollow-up appointment

‘We will work on this together.’

Communicate with the TeamDocument in notes and letters, inform patients GP

Appendix 2

Breaking Bad News Flowchart

September 2008

Step 1

Step 2

Step 3

Step 4

Step 5

Step 6



5 Byte Version 2 Read Codes (EMIS, Vision, Isoft systems) CTV3 Codes (TPP SystmOne system)

8BJ2. Supportive care 8BA2. End of life care - QOF8BA2. Terminal care - QOF8CS.. Agreement of care plan Xa4HX Agreement of care plan

XaJQn Review of care planXaLG1 Palliative care plan reviewXaJQo Review of care programme approach care planXaJQ0 Agreement of care programme approach care plan

8CM4. Liverpool care pathway for the dying - QOF XaIpl Final days pathway9N0l. Seen in out of hours centre XaKNv Seen in out of hours centre

94Z0. Preferred place of death XaIpX Preferred place of death94Z1. Preferred place of death: home XaJ3g Preferred place of death: home94Z2. Preferred place of death: hospice XaJ3h Preferred place of death: hospice94Z3. Preferred place of death: community hospital XaJ3i Preferred place of death: community hospital94Z4. Preferred place of death: hospital XaJ3j Preferred place of death: hospital94Z5. Preferred place of death: nursing home XaJ3k Preferred place of death: nursing home8CN1 Preferred place of death discussed with patient XaIsy Preferred place of death discussed with patient8CN0 Preferred place of death discussed with significant other XaIsx Preferred place of death discussed with significant other

949.. Place of death XaEKH Place of death9491. Patient died at home 9491. Patient died at home9492. Patient died in part 3 accom. XE2IO Patient died in part 3 accommodation9493. Patient died in nursing home 9493. Patient died in nursing home9494. Patient died in resid.inst.NOS 9494. Patient died in residential institution NOS9495. Patient died in hospital 9495. Patient died in hospital9496. Patient died in street 9496. Patient died in street9497. Patient died in publ.place NOS 9497. Patient died in public place NOS9498. Dead on arrival at hospital 9498. Dead on arrival at hospital9499. Found dead at accident site 9499. Found dead at accident site949A. Patient died in hospice XaEK5 Patient died in hospice949B. Patient died in community hospital XaJ2g Patient died in community hospital949C. Patient died in GP surgery XaJrK Patient died in GP surgery949Z. Patient died in place NOS 949Z. Patient died in place NOS

Xa7nB Found dead in bedXE2TT Patient died in part 4 accommodationXa9sg Patient died during operationXE2xp Patient died - to record place

8BJ1. Palliative Treatment - QOF XaIpI Palliative treatment - QOF8BAP. Specialist Palliative care - QOF8CM3. Palliative care plan review XaLG1 Palliative care plan review8H7g. Referral to palliative care service - QOF XaAex Referral to palliative care service - QOF

XaLKI Under care palliative care service8CM1. On GSF - QOF XaJv2 on GSF - QOF9Nh0. Under the care of community palliative care team XaLkE Under the care of community palliative care team

8BAR. Specialist palliative care treatment - inpatient XaIsf specialist palliative care treatment – inpatient8BAT. Specialist palliative care treatment – outpatient – QOF XaIt7 specialist palliative care treatment – outpatient8HH7. Referred to community specialist palliative care team XaIlk – referred to community specialist palliative care team8CN1 - preferred place of death discussed with patient8CN0 - preferred place of death discussed with significant other

ZV57C - palliative care - QOF9ke - palliative enhanced services administration 9e2 - GP OOH handover form completed9e00 - GP OOH service notified of cancer care plan1R1 - not for resuscitation Xa9tT not for resuscitation8o7 carer support Xa1oA carer support8BMM - issue of palliative care anticipatory medication box XaPmq Issue of palliative care anticipatory medication box8GA0 – crisis intervention

1Z01.Terminal illness – late stage 1Z01. Terminal illness - late stage8BAS. Specialist palliative care treatment – daycare XaIse Specialist palliative care treatment8BAe. Anticipatory palliative care XaQ8S Anticipatory palliative care8H6A. Refer to terminal care consult 8H6A. Refer to terminal care consult8H7L. Refer for terminal care 8H7L. Refer for terminal care9EB5. DS 1500 Disability living allowance (terminal care) completed 9EB5. DS 1500 Disability living allowance (terminal care) completed

XaIsf Specialist palliative care treatment – inpatientXaIt6 Specialist palliative care treatment – daycareXaIt7 Specialist palliative care treatment – outpatientXaAg6 Referral to palliative care physicianXaAT5 Seen by palliative care physicianXaAWN Seen by palliative care medicine – serviceXaAPW Under care of palliative care physicianZV57C [V]Palliative care

Appendix 3

Standard Read Codes QOF = Codes used within QOF



GlossaryACP Advance Care Plan/Planning

ADRT Advance Decision to Refuse Treatment

DH Department of Health

DHU Derbyshire Health United

DNAR Do Not Attempt Resuscitation

DS1500 Report entitling person at end of life to accessbenefits

EMAS East Midlands Ambulance Service

EoL End of Life

GP General Practitioner

GSF Gold Standards Framework

KPI Key Performance Indicator

IAPT Improving Access to Psychological Therapies

LCP Liverpool Care Pathway

MDT Multi-Disciplinary Team

NICE National Institute for Health and Clinical Excellence

NHS National Health Service

NHSD NHS Direct

OOH Out of Hours

PCT Primary Care Trust

PPC Preferred Priorities for Care

PRN Pro Re Nata (as necessary)

SPC Specialist Palliative Care

References and Web LinksAdvance Care Planning, A Guide for Health and SocialCare Staff. NHS End of Life Care Programme, 2007www.endoflifecare.nhs.uk/eolc/acp/

Advance Decisions to Refuse Treatment; SpecialistGuidance, Mid Trent Cancer Network, 2007www.adrtnhs.co.uk

Breaking Bad News, Mid Trent Cancer Network, 2008http://information4u.org.uk/?q=node/94

Breaking Bad News, North Trent Cancer Network, 2005http://www.northtrentcancernetwork.nhs.uk/professionals/key-documents/breaking-bad-news

Dementia UK Full Report, Alzheimer’s Society, 2007http://www.alzheimers.org.uk/downloads/Dementia_UK_Full_Report.pdf

Gold Standards Framework. A Programme forCommunity Palliative Care, National End of Life CareProgramme www.goldstandardsframework.nhs.uk/

Gomes, B., & Higginson, I.J. 2006 “Factors influencingdeath at home in terminally ill patients with cancer:systematic review”, British Medical Journal, vol. 332, no.7540, pp. 515-521

Guidance on Cancer Services: Improving Supportive andPalliative Care for Adults with Cancer, The Manual;National Institute for Health and Clinical Excellence, 2004www.nice.org.uk/nicemedia/pdf/csgspmanual.pdf

Higginson, I.J., 2003 “Priorities for end of life care inEngland, Scotland and Wales”, National Council forPalliative Care

Liverpool Care Pathway for the Dying Patient, NHS Endof Life Care Programme and Marie Curie Cancer Carewww.mcpcil.org.uk/liverpool_care_pathway

“Our Health, Our Care, Our Say” White Paper,Department of Health, 2006http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyandGuidance/DH_4127453

Palliative Care Services: Meeting the Needs of Patients,Royal College of Physicians, 2008

Preferred Priorities for Care, NHS End of Life CareProgrammewww.endoflifecareforadults.nhs.uk

Valuing and Supporting Carers, Fourth Report of Session2007-8, Vol. 1, House of Commons Work and PensionsCommittee, 2008

World Health Organisation, “Palliative Care, The SolidFacts”, 2004www.euro.who.int/document/E82931.pdf

East Midlands Ambulance Servicewww.emas.nhs.uk

NHS Derbyshire County: End of Life Carehttp://www.derbyshirecounty.nhs.uk


NHS Derbyshire County and NHS Derby City


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