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Living Matters Dying Matters
A Palliative and End of Life Care Strategy for Adults in Northern Ireland
March 2010
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Contents
Page
Foreword 3 Executive Summary including Recommendations 5 Vision for Quality Palliative and End of Life Care 10
Section 1 Introduction 12
Section 2 Background 16 TheNeedforPalliativeandEndofLifeCare 16 PolicyContext 17 DefiningPalliativeandEndofLifeCare 20 AModelforPalliativeandEndofLifeCare 24
Section 3 Developing Quality Palliative and End of Life Care 28 RaisingAwarenessandUnderstanding 28 Education,TrainingandDevelopment 29 ResearchandDevelopment 35
Section 4 Commissioning Quality Palliative and End of Life Care 37Section 5 Delivering Quality Palliative and End of Life Care 44 TheAdoptionofaCaseManagementApproach 47 TheRoleofaKeyWorkerinEndofLifeCare 48 ACarePathwayApproachforTransitionalCarefor 49 YoungPeople ManagedClinicalNetworks 50Section 6 A Model for Quality Palliative and End of Life Care 53 DiscussionandIdentificationofPalliativeand 54 EndofLifeCare HolisticAssessment 56 PlanningPalliativeandEndofLifeCareAcross 60 CareSettingsandConditions
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Contents
Co-ordinatingandDeliveringPalliativeand 63 EndofLifeCareAcrossCareSettings CareintheLastDaysofLife 72 BereavementCare 73
Section 7 Action Plan for Quality Palliative and End of Life Care 77
Conclusion 88 Appendix 1 Membership of Steering Group 90
Appendix 2 Abbreviations 91
Appendix 3 Glossary of Terms 92
Appendix 4 References 101
Appendix 5 Bibliography 106
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Foreword
By the Minister for Health, Social Services and Public Safety
Mostofusnowlivelongerthaneverbefore.However,increasinglymoreofus,asweage,willlivewiththeconsequencesofchronicconditionsthatcanhaveadebilitatingeffectonourhealthandgeneralwell-being.Goodqualitypalliativeandendoflifecarewillbeimportanttousall.
ThevisionofthisStrategyisthatanypersonwithanadvancednon-curativecondition,liveswellanddieswellirrespectiveoftheirconditionorcaresetting.Thisrequiresaphilosophyofpalliativeandendoflifecarethatisperson-centredandwhichtakesaholisticapproachtoplanning,co-ordinatinganddeliveringhighqualityreliablecare,enablingpatientstoretaincontrol,dignityandcrucially,choiceinhowandwheretheircareisdeliveredtotheendoftheirlife.
Overthe5yeartimespanofthisStrategywewillcontinuetomakehighqualitypalliativeandendoflifecareaprioritywithinhealthandsocialcareservicesand,asaresult,offerpeoplerealchoiceinhowandwheretheircareisdelivered.
Tomakethisvisionarealityrequiresthat:
• boththepublicandhealthandsocialcareprofessionalsunderstandwhatpalliativeandendoflifecareisandhowitcanensurethatpeoplewithprogressiveconditionshaveagoodqualityoflifeand,whentheyreachtheendphaseoftheirlife,compassion,dignityandcomfortindeath;
• allthoseresponsibleforplanninganddeliveringpalliativeandendoflifecarehavetheknowledge,skillsandcompetence,informedbyevidence-basedresearch,toconfidentlyandsensitivelyundertaketheirrolesincaringforpeoplewhoaredyingandtheirfamiliesandcarers;
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Foreword
• thepalliativeandendoflifecareneedsofpatients,familiesandcarersareidentified,addressedandregularlyreviewedasamatterofcourse,includingtheneedforphysical,spiritual,psychological,financialandsocialsupport;
• allpalliativeandendoflifecareisplannedaroundtheassessedneedsoftheindividual,theirfamilyandcarersandisresponsivetotheirexpressedpreferences;
• allcareisdeliveredinawaythatisstructured,planned,integratedandco-ordinatedirrespectiveofwhenthatcareisneededandwhereitisprovided.
Toachievethisrequiresaculturalandbehaviouralshiftbothinhowpalliativeandendoflifecareisperceivedandinhowitisdelivered.Itmeansbeingsensitivetothepersonalbeliefs,culturesandpracticesofindividualsandtheirfamiliesandcarersandrecognisingthecontributionthatgoodpalliativeandendoflifecarecanmaketothequalityoftheirlives.Itmeansthatwheretheperson’spreferenceistoreceivecare,andwherepossibletodieathome,thattheinfrastructureandopportunitiesareinplacetomakesuchachoicerealandviable.
IbelievethisispossibleasIreflectonthecareandcompassionIhaveseendisplayedbyallthosewhoprovidepalliativeandendoflifecare.Irefernotonlytothetirelesscommitmentdemonstratedthroughourhospices,butalsobystaffwithincarehomes,hospitalsandthroughoutthecommunity.Iamalsomindfulthatfamilies,carersandvolunteerscontinuetobethecrucialcornerstoneofthiscare.
IamcommittedtoensuringthatthepeopleofNorthernIrelandhaveaccesstohighqualityhealthandsocialcareatallstagesoftheirlives.ThisStrategywillensurethatpalliativeandendoflifecareforadultsinNorthernIreland,irrespectiveoftheirconditionorwheretheylive,willhelpachievethis.
Michael McGimpseyMinister for Health, Social Services and Public Safety
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Executive Summary
Palliativeandendoflifecareistheactive,holisticcareofpatientswithadvancedprogressiveillness.ThisStrategyidentifiespalliativeandendoflifecareasacontinuumofcarethatcanevolveasaperson’sconditionprogresses.Thisisanintegralpartofthecaredeliveredbyallhealthandsocialcareprofessionals,andindeedbyfamiliesandcarers,tothoselivingwith,anddyingfromanyadvanced,progressiveandincurableconditions.Palliativeandendoflifecarefocusesonthepersonratherthanthediseaseandaimstoensurequalityoflifeforthoselivingwithanadvancednon-curativecondition.This5yearStrategyprovidesavisionanddirectionforserviceplanninganddelivery.Ithasbeendevelopedandshouldbeimplementedwithintheexistinglegalframework.
TheStrategybuildsoncurrentandpredicteddemographics,intelligenceandconsultationwhichhaveinformedtheimplementationofotherDepartmentalpolicyareas,ServiceFrameworks,andPrioritiesforActionTargetsandtakesintoaccountpolicycontextfromtheotherUnitedKingdom(UK)countriesandtheRepublicofIreland(RoI).
TheStrategysetsoutavisionforpalliativeandendoflifecareacrossallconditionsandcaresettings,basedonwhatpeoplevaluemostandexpectfromsuchcare.Thisvisionemphasisestheimportanceof:• Understandingpalliativeandendoflifecare;• Bestandappropriatecaresupportedbyresponsiveandcompetentstaff;• Recognisingandtalkingaboutwhatmatters;• Timelyinformationandchoice;• Co-ordinatedcare,supportandcontinuity.
Drivingtheserviceimprovementexpectationofthisvisionrequiresownershipandleadershipfromacrossallcommissionersandproviders.Therolesofpublic,independent,community,andvoluntarysectororganisations,andthecollaborativearrangementsthatexistbetweenthem,areessentialtoqualitypalliativeandendoflifecare.TheStrategyreinforcestheneedtocontinuetostrengthenthesecreativepartnershipsthroughlocalandregionalinfrastructureandstrategicplans.AnImplementationBoardrepresentativeofkeystakeholderswillbeestablishedwitharemittoensurethatthe
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Executive Summary
recommendationscontainedwithintheStrategyaredevelopedandembeddedintopractice.
Greaterpublicandprofessionalunderstandingofpalliativeandendoflifecarewillensurethatpatients,carers,families,communities,andstaffwillhavetherightknowledgeandskillsavailableattherighttimeandintherightplacetodelivercompassionate,appropriateandeffectivegeneralistandspecialistpalliativeandendoflifecare.
TheStrategyconsidersthedeliveryofqualitypalliativeandendoflifecareandrecommendstheconceptofaModelforPalliativeandEndofLifeCareasavehiclefordeliveringhighqualitycare.ThisModelreflectsthecomponentsoftheexistingregionalcommunityfacingmodelforpalliativeandendoflifecareandenablesthediscussionandidentificationofpatient,familyandcarerneedsthroughcontinuousholisticassessment.Thisinturninformstheplanning,co-ordinationanddeliveryofperson-centredcareacrosscaresettings,particularlythroughoutthelastyears,monthsanddaysoflife,andidentifiesbereavementcareasakeypartofpalliativeandendoflifecare.
TheModelrecogniseshowpatientchoiceneedstobesupportedbyappropriateinfrastructuresandservices,includingaccessto24houressentialservices.CrucialtotheimplementationoftheModelwillbetheroleoftheendoflifekeyworkerwithresponsibilityforco-ordinatingservicesandfacilitatingeffectivecommunicationofinformationbetweenpatients,families,carersandhealthandsocialcareproviders.
AnumberofspecifictoolsandframeworkstodirectserviceplannersandproviderstokeyareasofserviceimprovementhavebeenincludedwithintheStrategy.InadditionanumberofexemplarsalsofeaturetoillustrategoodpracticealreadyhappeninginNorthernIrelandorelsewhere.
The25recommendationsemanatingfromthisStrategyhavebeenbuiltintoanActionPlantoenabletheplanninganddeliveryofqualitypalliativeandendoflifecareoverthenext5years.
Note: • ThroughoutthisStrategytheuseoftheword“patient”shouldalsobetakentomean“client” • “Family”isbestdefinedbythepatientthemselvesandmayincludedependants,step-family, familybymarriageorcivilpartnershiporfamilybychoice
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Recommendations
Section 3 – Developing Quality Palliative and End of Life Care
1. Opendiscussionaboutpalliativeandendoflifecareshouldbepromotedandencouragedthroughmedia,educationandawarenessprogrammesaimedatthepublicandthehealthandsocialcaresector.
2. Thecoreprinciplesofpalliativeandendoflifecareshouldbeagenericcomponentinallpre-registrationtrainingprogrammesinhealthandsocialcareandinstaffinductionprogrammesacrossallcaresettings.
3. Mechanismstoidentifytheeducation,developmentandsupportneedsofstaff,patients,families,carersandvolunteersshouldbeinplacetoallowperson-centredprogrammestobedevelopedwhichpromoteoptimalhealthandwell-beingthroughinformation,counsellingandsupportskillsforpeoplewithpalliativeandendoflifecareneeds.
4. Arangeofinter-professionaleducationanddevelopmentprogrammesshouldbeavailabletoenhancetheknowledge,skillsandcompetenceofallstaffwhocomeintocontactwithpatientswhohavepalliativeandendoflifecareneeds.
5. Arrangementsshouldbeinplacewhichprovidefamiliesandcarerswithappropriate,relevantandaccessibleinformationandtrainingtoenablethemtocarryouttheircaringresponsibilities.
6. Acollaborativeandcollegiateapproachtoresearchanddevelopmentshouldbeestablishedandpromotedtoinformplanninganddelivery,driveupqualityandimproveoutcomesinpalliativeandendoflifecare.
Section 4 – Commissioning Quality Palliative and End of Life Care
7. AleadcommissionershouldbeidentifiedforpalliativeandendoflifecareatregionallevelandwithinallLocalCommissioningGroups.
8. Systemsshouldbeinplacewhichcapturequalitativeandquantitativepopulationneedsrelatingtopalliativeandendoflifecare.
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Recommendations
Section 5 – Delivering Quality Palliative and End of Life Care
9. Eachpatientidentifiedashavingendoflifecareneedsshouldhaveakeyworker.
10. Everychildandfamilyshouldhaveanagreedtransferplantoadultservicesinbothacutehospitalandcommunityserviceswithnolossofneededserviceexperiencedasaresultofthetransfer.
11. ThepotentialforaManagedClinicalNetworkshouldbeexploredtoensureleadership,integrationandgovernanceofpalliativeandendoflifecareacrossallconditionsandcaresettings.
Section 6 – A Model for Quality Palliative and End of Life Care
12. Arrangementsshouldbeputinplacewhichallowforthemostappropriateperson(bethatclinicalstaff,carers,spiritualcareprovidersorfamilymembers)tocommunicatewith,andprovidesupportfor,anindividualreceivingsignificantinformation.
13. Appropriatetoolsandtriggersshouldbeimplementedtoidentifypeople
withpalliativeandendoflifecareneedsandtheirpreferencesforcare.
14. Alocalitybasedregistershouldbeinplacetoensure(withthepermissionoftheindividual)thatappropriateinformationaboutpatient,familyandcarerneedsandpreferencesisavailableandaccessiblebothwithinorganisationsandacrosscaresettingstoensureco-ordinationandcontinuityofqualitycare.
15. Conditionspecificcarepathwaysshouldhaveappropriatetriggerpointsforholisticassessmentofpatients’needs.
16. Timelyholisticassessmentsbyamulti-disciplinarycareteamshouldbeundertakenwithpeoplewhohavepalliativeandendoflifecareneedstoensurethatchangingneedsandcomplexityareidentified,recorded,addressedandreviewed.
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Recommendations
17. Timelyholisticassessmentsbyamulti-disciplinarycareteamshouldbeundertakenwiththefamilyandcarersofpeoplewhohavepalliativeandendoflifecareneedstoensurethattheirneedsareidentified,recorded,addressedandreviewed.
18. Respitecareshouldbeavailabletopeoplewithpalliativeandendoflifecareneedsinsettingsappropriatetotheirneed.
19. Patients,theirfamiliesandcarersshouldhaveaccesstoappropriateandrelevantinformation.
20. Palliativeandendoflifecareservicesshouldbeplannedanddevelopedwithmeaningfulpatient,familyandcarerinvolvement,facilitatedandsupportedasappropriateandprovidedinaflexiblemannertomeetindividualandchangingneeds.
21. Servicesshouldbeprioritisedfortheprovisionofequipment,transportandadaptations,forallpatientswhohaverapidlychangingneeds.
22. Policiesshouldbeinplaceinrespectofadvancecareplanningforpatientswithpalliativeandendoflifecareneeds.
23. Toolstoenablethedeliveryofgoodpalliativeandendoflifecare,forexample,theGoldStandardsFramework,PreferredPrioritiesforCare,MacmillanOut-of-HoursToolkitortheLiverpoolCarePathway,shouldbeembeddedintopracticeacrossallcaresettingswithongoingfacilitation.
24. Allout-of-hoursteamsshouldbecompetenttoprovideresponsivegeneralistpalliativeandendoflifecareandadvicetopatients,carers,familiesandstaffacrossallcommunitybasedcaresettings.
25. Accesstospecialistpalliativecareadviceandsupportshouldbeavailableacrossallcaresettings24/7.
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Vision for Quality Palliative and End of Life Care
ThePalliativeandEndofLifeCareStrategyhasbeendevelopedinresponsetowhatpeopleexpectandvaluemostfrompalliativeandendoflifecare,recognisingthatlivingmattersanddyingmatterstoall.TheStrategy’svisionisthatanypersonwithanadvancednon-curativecondition,liveswellanddieswellirrespectiveoftheirconditionorcaresetting.Thisrequiresaphilosophyofcarethatisperson-centredandwhichtakesaholisticapproachtoplanning,co-ordinatinganddeliveringhighquality,equitableandreliablecarethatenablespeopletoretaincontrol,dignityand,crucially,choiceinhowandwheretheircareisdeliveredtotheendoftheirlife1.
Makingthisvisionarealityrequiresanunderstandingofthecomplexityofpalliativeandendoflifecareacrossallconditions,aswellasownershipandleadershipatalllevelsofpolicy,planning,commissioning,educationanddeliveryofcare.Thiswillinvolvecommitmenttochangecultureandpracticeinthefollowing5keyareas:
Understanding palliative and end of life care
• Palliativeandendoflifecareshouldbeapplicableacrossallconditionsandallcaresettings.
• Palliativeandendoflifecareshouldenhancequalityoflife,improvefunctionandensurecomfort.
• Palliativeandendoflifecareshouldpresentpeoplewithoptionsforchoiceinbywhom,howandwheretheircarecanbedelivered.
Developing skills and knowledge
• Thoseresponsiblefortheplanninganddeliveryofpalliativeandendoflifecarewillhaveanappropriatelevelofknowledge,skillsandcompetencetoprovidesensitiveandcompassionatesupportandcare.
• Thoseresponsiblefortheplanninganddeliveryofpalliativeandendoflifecarewillhaveaccesstoguidelinesprovidingclearinformationonthebeststandardsofpractice.
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Vision for Quality Palliative and End of Life Care
Identifying needs and talking about what matters
• Theeffectsofillnessontheperson,family,carersandstaffwillbeacknowledged.
• Individualswillhaveaholisticassessmentthatidentifiesthesocial,spiritual,financial,physicalandpsychologicalneedstheyfaceasaresultoftheirillness.
• Everyeffortwillbemadetoaddresspatients’symptomse.g.pain,nausea,shortnessofbreath,agitation,psychologicalandspiritualdistress.
Planning care - timely information and choice
• Individuals’priorities,optionsandchoiceswillbeatthecentreofallpalliativeandendoflifecareplanning.
• Individuals,theirfamilies,carersandstaffwillfeelinformedandknowwhattoexpectastheconditionprogresses.
• Arecordedplanofcarewillbemadesothatpersonalprioritiesareknowntoallcareserviceprovidersandareaccessibleatalltimes.
• Asfaraspossible,peoplewillbesupportedtodieathomeifthatpreferenceisexpressed.
• Patientswillhaveaccesstospecialistpalliativecareservicesbasedonassessedneed.
• Theconcernsandneedsofcaregivers(includingrespite)willbeassessed,addressedandrecorded.
Delivering and co-ordinating care, support and continuity
• Patients,families,carersandstaffcancountonhavingaccesstoappropriateprofessionalstorelyuponatalltimes.
• Movementbetweenservices,settings,andpersonnelshouldonlyhappenwhennecessaryandtoimprovequalityofcareandlifefortheindividual,theirfamilyandcarers.
• Proactiveplanningandeffectivecommunicationmustunderpinthesmoothdeliveryofcareona24hourbasis.
AdaptedfromNICE,2004,RegionalModel2008,&ImprovingCarefortheEndofLife.JoanneLynn,JaniceLynchSchusterandAnneWilkinson,LinNoyesSimon(2008)ImprovingCarefortheEndofLife.ASourceforHealthCareManagersandClinicians(2ndEd)OxfordUniversityPress
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SECTION 1Introduction
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1.1 HealthandSocialCare(HSC)servicesforpeoplewithpalliativeandendoflifecareneedshaveimprovedconsiderablyoverrecentyears.Theworkofthehospicemovementhasprovidedanimportantimpetusforthisashasthedevelopmentofcreativepartnershipsbetweenpublic,independent,communityandvoluntarysectororganisations,workingtogethertodesign,developanddeliverservices.Aspeoplelivelonger,andwiththeincreasingprevalenceofchronicconditions,itisessentialthattheHSCanditscarepartnerscollaboratefurthertomeetthechallengeofplanninganddeliveringhighqualitypalliativeandendoflifecareforincreasingnumbersofpatientsandclientsacrossNorthernIrelandlivingwithoneormorechronicconditionorphysicaland/orcognitivefrailty.
1.2 Palliativeandendoflifecareisbothaphilosophyofcareandanorganised,highlystructuredsystemforplanninganddeliveringcare2.Thephilosophyaffirmsperson-centred,holisticcareandvaluespatientandfamilylives,beliefsandpreferences.Theeffectiveplanninganddeliveryofpalliativeandendoflifecareimprovesthequalityofcareinthreeprimaryareas:
• Enhancedpatient/carer/cliniciancommunicationanddecision-making;
• Bettermanagementofpainandothersymptoms,includingspiritualandpsychologicalneedsofpatients,theirfamiliesandcarers;
• Improvedco-ordinationofcareacrossmultiplehealthandsocialcaresettings.
1.3 ThedevelopmentofthisStrategyhasbeeninformedbyarangeofnationalandinternationalstrategiesanddevelopmentsinpalliativeandendoflifecareundertakenbyanumberofnationalandinternationalbodies.Theseinclude:
• TheWorldHealthOrganisation(WHO)3andtheCouncilofEurope4;• DepartmentofHealth(DoH)England5;• WelshAssemblyGovernment6;• ScottishGovernment7;
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SECTION 1Introduction
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• IrishHospiceAssociationandHealthServiceExecutive(consultationframework)8.
1.4 TheStrategyalsobuildsuponaconsiderableamountofworkthathasalreadybeenundertakeninNorthernIreland.Forexample,theNorthernIrelandCancerNetwork(NICaN),throughtheauspicesofitsSupportiveandPalliativeCareNetworkGroup,hasdevelopedgenericstandardsforpalliativecareaswellasregionalguidelinesforbestpracticecare.
Terms of Reference and Aim of the Palliative and End of Life Care Strategy
1.5 ThetermsofreferenceweretodevelopaStrategythatidentifiespalliativeandendoflifecareasacontinuumthatisapplicableacrossallconditionsandcaresettings.TheoverallaimoftheStrategyistoimprovethequalityofpalliativeandendoflifecareforadultsinNorthernIreland,irrespectiveofconditionorcaresettingby:
• Providingapolicyframeworkwhichenablespublic,independent,communityandvoluntarycareproviderstodeliverhighqualitypalliativeandendoflifecaretothepeopleofNorthernIreland;
• Ensuringthatpalliativeandendoflifecareisfocusedonthepersonratherthanthediseaseandthattheprinciplesandpracticesofhighqualitycareareapplied,withoutexception,toallthosewithpalliativeandendoflifecareneeds.
Outcomes of the Strategy
1.6 TheStrategyprovidesaframeworkwhichwillsupportcommissionersandprovidersinachievingthefollowingoutcomes:
• Araisedawarenessandunderstandingofpalliativeandendoflifecare;
• Increasedknowledgeandskillsofhealthcareprofessionalsinrespectofpalliativeandendoflifecare;
• Healthandsocialcareprofessionalsenabledtoidentifyindividualswhocouldbenefitfrompalliativeorendoflifecare;
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SECTION 1Introduction
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• Holisticassessmentoftheneedsofindividualsrequiringpalliativeandendoflifecare,theirfamiliesandcarers;
• Araisedawarenessoftheneedforappropriatesupportarrangementsforcarers,familiesandstaff;
• Increasedopportunitiesforchoiceforindividualsinrespectofwheretheyreceivepalliativeandendoflifecareandultimatelywheretheydie;
• Timely,effectiveandefficientdeploymentofresources,targetingcaretowardsneed;
• Theprovisionofbestpracticeguidelinesandstandardsforthedeliveryofpalliativeandendoflifecarewhichwillmeetpatient,familyandcarerneeds;
• Anintegratedandco-ordinatedwholesystemsapproachtopalliativeandendoflifecarethroughthedevelopmentofcarepathwaysthatareresponsivetopatientneeds,irrespectiveoftheirconditionorcaresetting;
• APalliativeandEndofLifeCareStrategywhichlinkswithotherDepartmentalpoliciesandstrategies,inparticulartheDepartment’spolicyofprovidingservicescloserto,orin,patients’andservice
users’homes.
Scope of the Strategy
1.7 TheStrategy,whichhasbeendevelopedwithintheexistinglegalframework,recognisesthatpeoplemustbeconsideredandcaredforasindividualswithreasonableadjustmentsmadeaccordingly.Itacknowledgesthatallpalliativeandendoflifecareshouldbeprovidedwithanequitable,person-centredapproachrespectingthediversityofpatients,theirfamiliesandcarers.Itendorsesanintegratedandholisticapproachtotheassessmentandmanagementofsymptomsandtreatment,movingbeyondapurelyclinicalresponsetoincluderecognitionofemotional,spiritual,social,andpsychologicalcircumstances.Thisrequiresresponsivecareandsupportthatisdesignedtomeettheirspecificneedsco-ordinatedacrossallcaresettings.
1.8 TheStrategyrecognisesthatpalliativeandendoflifecareformsacontinuumofcarethatmayapplyfromdiagnosisofalife-limiting
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SECTION 1Introduction
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condition,rightthroughtodeathandbereavement.Withinthiscontext,theStrategyprovidesaframeworkforhighqualitypalliativeandendoflifecare,emphasisingthesignificanceofearlyidentificationofanindividual’sneedforpalliativecare,theinterplaybetweenpalliativecareandchronicconditionmanagementandtheimportanceofensuringthattheskillsareinplacetoanticipateanddeliverqualityendoflifecare.
1.9 Inaddition,theStrategyrecognisesthesignificantcontributionwithincommunitieswhichfamiliesandcarersmakeinprovidinginformalcarefortheirlovedones.Itpromotestheirroleintheinter-disciplinaryandinter-agencyteamworkthatiscentraltogoodqualitypalliativeandendoflifecare.
1.10 PalliativeandendoflifecareforchildrenandyoungpeopleisnotwithinthescopeofthisStrategygiventheirveryspecialisedneedsinthisarea.However,whereayoungpersonmovesintoadultcareitisimportantthattheirtransitionalcareneedsareconsidered.Transitionalcareisthepurposeful,plannedprocessthataddressesthemedical,psychosocialandeducationalneedsofadolescentsandyoungadultswithchronicphysicalandmedicalconditionsfromachild-centredtoadult-orientatedhealthcaresystem9.TheStrategyreferencesexistingbestpracticeguidanceonthetransitionalcareofyoungpeopleintoadulthood.
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SECTION 2Background
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The Need for Palliative and End of Life Care
2.1 Palliativeandendoflifecareisincreasinglyrecognisedasapublichealthissuethatencompassesthehealthandwellbeingofthepopulationasawhole.Approximately15,000peopledieinNorthernIrelandeachyear(seeFigure1).Themaincausesofdeatharecirculatorydiseases(35%ofdeaths);cancerrelateddeaths(26%)andrespiratorydiseases(14%).Changingdemographicsmeanthatpeoplearelivinglongerandoftenwithoneormorechronicconditions.Asaresult,overtimeincreasingnumbersofpeoplewillrequiremorecomplexcareforlonger.
2.2 By2017,projectionsfortheregionalpopulation(basedonthe2006mid-yearpopulationestimates)suggestthat310,000peopleinNorthernIrelandwillbeaged65andover-thisrepresents16%ofthetotalpopulation.Itiswithinthissectionofthepopulationthatthehighestincidenceandmortalityfromcancerandotherchronicconditionsexists.Giventhattheprevalenceofchronicconditionsanddementiaincreaseswithage,demandforpalliativeandendoflifecareservicesislikelytoincreaseasthepopulationagesandmorepeoplelivewiththeconsequencesofphysicaland/orcognitivefrailty.
2.3 TheHouseofCommons,HealthCommitteePalliativeCare,4thReportofSession2003-200410;recognisedtheinequityofaccesstopalliativecarefornon-cancerpatients.TheCommitteealsoacceptedthatmanyofthecarepracticesforcanceraretransferableinnatureandcouldbeusedacrossotherconditions.Thesymptomburdenforpeoplewithchronicconditions,includingchronicobstructivepulmonarydisease(COPD),dementia,heartfailure,andallotherneurologicalanddegenerativediseases,equalsthatofpeoplewithcancerandmayoftenbeoflongerduration.
2.4 StudiesbytheNationalCouncilforPalliativeCarehighlightthatapproximatelytwothirds(9,570)ofpeopledyinginNorthernIrelandeveryyearwouldbenefitfromalevelofpalliativecareduringthelastyearoflifebutforreasonsofdiagnosisareexcluded11.
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SECTION 2Background
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Figure 1: DeathsinNorthernIreland2006–2008byPlaceofDeath
Registration Year
Place of Death 2006 2007 2008
AllHospitals 7,706 53.0% 7,520 51.3% 7,515 50.4%
NursingHomes 2,102 14.5% 2,249 15.4% 2,421 16.2%
Hospices 490 3.4% 523 3.6% 550 3.7%
OtherPlaces1 4,234 29.1% 4,357 29.7% 4,421 29.7%
AllDeaths2 14,532 100.0% 14,649 100.0% 14,907 100.0%
Note1Includesdeathsathome.2ThesefiguresrepresentalldeathsinNorthernIrelandasaresultofillnessandallothercauses.Source:GeneralRegistrar’sOffice12
2.5 Inmeetingtheanticipatedhigherdemandforpalliativeandendoflifecare,itwillalsobenecessarytoaddresspeople’sexpectationsofoptionsandchoiceinhowandwherecareisdelivered.Studiesshowthatthemajorityofpeoplewithaterminalillnesswouldprefertodieathome13,howeverapproximately50%ofalldeathsinNorthernIrelandstilloccurinhospitals(seeFigure1).Asfaraspossibletheaimshouldbetoprovidecareintheenvironmentoftheindividual’schoice.
Policy Context
2.6 ThisStrategybuildsuponanumberofexistingpoliciesandguidelineswhichhavedirectlyandindirectlycontributedtothedevelopmentofpalliativeandendoflifecareservicesinNorthernIreland.
“AHealthierFuture”RegionalStrategy(DHSSPS,2004)and“CaringforPeopleBeyondTomorrow”PrimaryCareStrategicFramework(DHSSPS,2005)setouttheDepartment’soverarchingcommitmenttothedevelopmentofresponsiveandintegratedhealthandsocialcareserviceswhichaimtoreducedependenceonhospitalsandinsteadprovidecaretopatientsandclientsintheirowncommunities.
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SECTION 2Background
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2.7 ThefollowingpoliciesandguidelineshavealsocontributedtothedevelopmentofpalliativeandendoflifecareservicesinNorthernIreland:
TheCampbellReport“CancerServices-InvestingfortheFuture”(DHSSPS,1996)madeanumberofrecommendationsincludingtheneedforaRegionalReviewofPalliativeCareServices;
“PartnershipsinCaring–StandardsforService”(DHSSPS,2000)wasdevelopedinconjunctionwithkeypublicandvoluntaryorganisationsandmadeanumberofwiderangingrecommendationsforthedevelopmentofpalliativecareservices.Thisreportwasinstrumentalinpromotingimprovementsincancerandpalliativecareservices,includinghighlightingtheneedforpartnershipbetweenpatients,families,carersandthoseprovidinghealthandsocialcareservices;
“BestPracticeBestCare”(DHSSPS,2001)describedhowthequalityofservicescouldimproveandrecommendedthateveryoneinvolvedinhealthandsocialcareshouldrecognisetheneedtodeliverhighqualityservices;
“ValuingCarers”(DHSSPS,2002),and“CaringforCarers”(DHSSPS,2006)providedstrategicdirectionfortheprovisionofsupportservicesforcarers;
“AStrategicFrameworkforRespiratoryConditions”(DHSSPS,2006)highlightedtheimportanceofadoptingawholesystemsapproachtothepreventionandtreatmentofrespiratorydiseaseandmadeaseriesofrecommendationsastohowservicesforrespiratorypatientsmightbedeveloped;
“ImprovingthePatientandClientExperience”(DHSSPS,2008)setoutfivestandards,developedbytheDepartment’sChiefNursingOfficerincollaborationwiththeRoyalCollegeofNursing(RCN)andtheNorthernIrelandPracticeandEducationCouncil(NIPEC),whichstipulatewhatthepublicshouldexpectfromstaffinthehealthserviceinrelationtorespect,attitude,behaviour,communicationandprivacyanddignity;
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SECTION 2Background
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An“IntegratedCarePathwayforChildrenwithComplexPhysicalHealthCareNeeds”(DHSSPS,2009)providedguidanceinmeetingtheneedsofchildrenandyoungpeopleupto18yearsofagewhohavecomplexphysicalhealthandsocialcareneeds.Italsorecognisedtheneedsoftheirfamiliesandcarers;
“TheNorthernIrelandHealthandSocialCareServicesStrategyforBereavementCare”(DHSSPS,2009)aimedtopromoteanintegrated,consistentapproachtoallaspectsofcareacrosspublichealthandsocialcareservicesinsupportofpeoplewhohavebeenbereaved.Itprovidedvaluableinformationandguidanceaimedatimprovingtheknowledgeandcompetenceofhealthandsocialcareprovidersincaringforthosewhohavebeenbereaved.
2.8 Inaddition,theNationalInstituteforHealthandClinicalExcellence(NICE)haspublishedaseriesofguidancedocumentsonpalliativecareandchronicconditions.Theseinclude:
“ChronicHeartFailure;ManagementofChronicHeartFailureinAdultsinPrimaryandSecondaryCare”(NICE2003);
“GuidanceonImprovingSupportiveandPalliativeCareforAdultswithCancer”(NICE2004);
“ManagementofChronicObstructivePulmonaryDiseaseinAdultsinPrimaryandSecondaryCare”(NICE2004);
“Parkinson’sDisease;DiagnosisandManagementinPrimaryandSecondaryCare”(NICE2006);
“Dementia;NICE-SCIEGuidelineonSupportingPeoplewithDementiaandtheirCarersinHealthandSocialCare”(NICE2007).
2.9 Eachoftheseguidancedocumentsmadeanumberofrecommendationswhichincludedanemphasisonthepersonalinvolvementofthosewhoexperiencecaretoenabletheplanning,deliveryandevaluation
20
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Living MattersDying Matters
oftheirservices.Accesstoinformation,theroleofakeyworkerandtheco-ordinationofproactiveandresponsivecare,includingaccesstospecialistpalliativecareservices,wereallhighlightedwithintheseguidancedocuments.
In2004theNHSModernisationAgencypublishedthe“SupportiveandPalliativeCareforAdvancedHeartFailure,CoronaryHeartDiseaseCollaborative”tocomplementthe2003NICEguidanceonthemanagementofchronicheartfailure.
2.10 WorkisongoingonthedevelopmentofaseriesofServiceFrameworksforHealthandWell-beinginNorthernIreland.Eachoftheseframeworkswillcontainexplicitstandardsreflectingthecareandsupportwhichpatients,clients,theircarersandfamiliesshouldexpecttoreceiveandwillpromoteparticularareasofperformanceimprovementforhealthandsocialcareorganisations14.Standardsforpalliativecare,whichaimtopromoteequityofcare,havebeendevelopedforinclusionintheframeworks.
Defining Palliative and End of Life Care
Palliative Care
2.11 Palliativecareisdefinedas:“theactive,holisticcareofpatientswithadvancedprogressiveillness.Managementofpainandothersymptomsandprovisionofpsychological,socialandspiritualsupportisparamount.Thegoalofpalliativecareistoachievethebestqualityoflifeforpatientsandtheirfamilies.Manyaspectsofpalliativecarearealsoapplicableearlierinthecourseoftheillnessinconjunctionwithothertreatments”15.Morelatterlytheimportanceof“earlyidentificationandimpeccableassessment”hasbeenaddedtothisdefinitionasitisthoughtthatproblemsattheendoflifecanhavetheiroriginsatanearliertimeintheprogressionoftheillnessandshouldthereforeberecognisedanddealtwithsooner16.
2.12Palliativecarecaninsomecasesmeanashiftfromacurativefocustowardsanapproachwhichseekstoalleviateandpreventtheescalation
Living MattersDying Matters
21
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ofsymptoms(SeeFigure2).Thetransitionbetweencurativeandpalliativecareisoftenblurred,whichemphasisestheimportanceofcommunicationbetweentheindividualandthehealthcareprofessionalwithregardstotheintentionoftreatment.Indentifyingthistransitioninformsthoughtfuldecision-makingabouttheappropriatenessofproposedtreatmentoptionsandexplorestheprovisionoffurthersocialandspiritualsupporttoaddressemotional,psychologicalandpracticalneeds,invaluabletotheindividual,theirfamilyandcarersinmanagingthecondition.
Figure 2: ShiftingFocustoPalliativeCare
Principles of Quality Palliative Care
2.13 Goodpalliativecare,whichmaybeapplicablefromdiagnosis:
• affirmslifeandregardsdyingasanormalprocess;• intendsneithertohastennortopostponedeath;• providesrelieffrompainandotherdistressingsymptoms;• integratesthepsychological,emotionalandspiritualaspectsof
patientcare;• offersasupportsystemtohelppatientsliveasactivelyaspossible
untildeath;
Disease modifying, Orpotentially “curative” care
Time
Death
Adapted from Murray, S A et al (2005) & Lynn, J & Adamson D (2003)
Sum
of
Trea
tmen
ts
Bereavement care
Living well with disease;“palliative” care
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• offersasupportsystemtohelpthefamilycopeduringthepatient’sillnessandintobereavement;
• usesateamapproachtoaddresstheneedsofpatientsandtheirfamilies,includingbereavementcounsellingifindicated;
• willenhancequalityoflife,andmayalsopositivelyinfluencethecourseofillness17.
End of Life Care
2.14 Endoflifecareisanintegralpartofthewiderconceptofpalliativecareandconsequentlymanyofthesameprincipleswillapply.Recentlytheemphasisonendoflifecarehasfocussedonhelpingallthosewithadvancedprogressiveandincurableconditionstoliveaswellaspossibleuntiltheydie.Itenablesthepalliativecareneedsofbothpatientandfamilytobeidentifiedandmetthroughoutthelastphasesoflifeandintobereavement.Itincludesmanagementofpainandothersymptomsandprovisionofpsychological,social,spiritualandpracticalsupport18.ForthepurposesofthisStrategy,endoflifewillbedescribedastheperiodoftimeduringwhichanindividual’sconditiondeterioratestothepointwheredeathiseitherprobableorwouldnotbeanunexpectedeventwithintheensuing12months,howeveraspecifictimescalecannotalwaysbeapplied.
2.15 Thispointwillbedifferentforeachindividualandwilloftendependonanassessmentoftheirconditionbyhealthandsocialcareprofessionals,carersand/orthepatientthemselves.Identifyingthepointatwhichillnessbecomesadvancedorreachestheendoflifephaseallowshealthandsocialcareproviderstoplanbestcarefortheirpatientsinordertomeettheirneedsandthoseoftheirfamiliesandcarersthroughoutthelastphaseoflifeandtheexperienceofbereavement.Aswithpalliativecare,endoflifecarealsoincludesphysicalcare,managementofpainandothersymptomsandprovisionofpsychological,social,spiritualandpracticalsupport19.
Living MattersDying Matters
23
SECTION 2Background
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Figure3belowsummarisestheelementsofcarewithinthecontinuumofpalliativeandendoflifecare.
Figure 3
Palliative Care End of Life Care a component of palliative care
PalliativeCareisanapproachthat EndofLifecareiscarethathelpsimprovesthequalityoflifeof allthosewithadvanced,patientsandtheirfamiliesfacing progressive,incurableillnesstolivetheproblemsassociatedwithlife aswellaspossibleuntiltheydielimitingillness
Preventionandreliefofsuffering Includesthemanagementofpainbymeansofearlyidentification andothersymptomsandprovisionandimpeccableassessmentand ofpsychological,social,spiritualtreatmentofpainandother andpracticalsupportproblems,physical,psychosocialandspiritual Itenablesthepalliativecareneeds ofbothpatientandfamilytobe identifiedandmetthroughoutthe lastphaseoflifeandtheexperience ofbereavement
Clinical Prognostic Indicators for End of Life Care
2.16 Recognisingwhenapersonenterstheendoflifecarephasecanbedifficultbutisessentialtogoodqualitycare.ClinicalPrognosticIndicatorsaretoolswhichcanhelpprovideaguidetoestimatingwhenapersonwithanadvanceddiseaseorconditionisinthelastyearor
24
SECTION 2Background
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sooflife.Whentheindicatorsareinterpretedaspartoftheholisticassessmentforanindividual,theycanhelptoalerthealthandsocialcareprofessionalstoidentifywhenapatientmaybegintorequireendoflifecare.
2.17ClinicalPrognosticIndicatorsareadvocatedwithintheGoldStandardsFramework(http:/www.goldstandardsframework.nhs.uk)andarealsoincludedwithinthegenericstandardsforpalliativecare.IntegrationofClinicalPrognosticIndicatorswithinagreedprotocolsandclinicalpathwayswillensurethatpeoplelivingwithchronicprogressiveillnesswillhavetimelyidentificationofpalliativeandendoflifecareneeds.
A Model for Palliative and End of Life Care
2.18Palliativeandendoflifecareisacontinuumofcarethatmayapplyfromdiagnosisofalife-limitingconditionrightthroughtotheendphaseoflifewhendeathisexpected.Thiscanincludepreandpostbereavementsupport.Figure4representsthiscarecontinuumwithinanoverarchingModelforPalliativeandEndofLifeCare.Continuousholisticassessmentofpalliativeandendoflifecareneediscrucialthroughouttoensureanindividual’scareisassessed,plannedforanddeliveredaccordingtotheirneedandinlinewiththevisionpresentedinthisStrategy.
2.19TheModelforPalliativeandEndofLifeCareisconsideredinmoredetailinSection6.
Living MattersDying Matters
25
SECTION 2Background
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Figure 4:AModelforPalliative&EndofLifeCare
Disease Trajectories
2.20 Individualscanaccesspalliativecarefromdifferentroutes.Forsome,palliativecaremaybenecessaryasaresultofaconditioninherentfrombirthandthereforetheneedforcaremightextendoveralifetime.Forotherstheneedforthiscaremaybeasaresultofadeteriorationofanexistingchronicconditionthatwillrequireare-adjustmentofongoingcasemanagementarrangementstofocusspecificallyonpalliativeandendoflifecareneeds.Inotherinstancespalliativeandendoflifecaremaybetheoutcomeofanewlydiagnosedconditionwhereprognosismaybeshortorlongerterm.
2.21 Aspalliativecareisrelevanttopeoplewithawiderangeofconditions,attemptshavebeenmadetodeterminehowfunctionaldeclinediffersbetweendifferenttypesofconditions.Understandingdiseasetrajectories(howaconditionprogresses)canhelppredicthowbothpopulation-levelandindividualhealthandsocialcareneedsmaydevelop
26
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overtime.Figure5representsanadaptationfromworkbyLynnetal20,showingtrajectoriesoverthelastyearoflife.
Figure 5:TheThreeMainTrajectoriesReflectingDeclineattheEndofLife
2.22Thediagramillustrateshowhealthandwell-beingcangraduallydeclineaschronicconditionssuchasheartorlungfailure,advanceddementiaorcancerprogress.Whilethetimespanoftrajectoryforanyindividualisparticularlydifficulttoquantify,theexperienceoflivingwithachronicconditionwillbeinterspersedwithepisodesofsuddenexacerbation,whichmaybephysicalorpsychologicalinnature.Atthesetimes,indicatedbytheabruptorsometimessubtledipsonthelinesoftrajectory,thepatientandtheirfamilyandcarerswillhavechangingneeds.
2.23Understandingthedifferenceindiseasetrajectoriessupportsbetterplanning,enablingcaretobesteppeduporsteppeddowninresponsetoidentifiedtriggersorcriticalpointsandreflectingthecircumstancesofthepatientandtheirfamiliesandcarersatanyparticulartime,includingwhenillnessbecomesadvancedandreachestheendoflifephase.
Adapted from Murray, S A et al. & Lynn, J & Adamson D (2003)
High
Low
Func
tion
Time
Death
CancerOrgan failurePhysical and/orcognitive frailtyincluding dimentia
Living MattersDying Matters
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SECTION 2Background
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A Whole Systems Approach to Palliative and End of Life Care
2.24Thedevelopment,commissioninganddeliveryofhighqualitypalliativeandendoflifecareservicesrequireawholesystemsapproach.Suchanapproachconsiderscaresystemsintheirentiretyandinrelationtoeachothersothathealthandsocialcareisplanned,designedanddeliveredacrosscaresettingstomeettheneedsofpatients,familiesandcarers.ThefollowingSections3-6explainhowthewholesystemsapproachcanbeapplied.
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3.1 Fundamentaltothedevelopmentofhighqualitycareisincreasingpublicandprofessionalawarenessandunderstandingaboutwhatpalliativeandendoflifecareisandensuringthatthoseresponsibleforitsdeliveryhavetheknowledge,skillsandcompetencesnecessarytodelivercareeffectively.Individualsreceivingpalliativeandsubsequentlyendoflifecareshouldfeelconfidentintheskillsandknowledgeoftheirhealthandsocialcareprofessionalsandknowthattheirindividualexpertiseisenhancedthroughgoodteamworkandtheaccessibilityof24-hoursupport.
Raising Awareness and Understanding of Palliative and End of Life Care
3.2 Oneofthemainchallengestoraisingthequalityofpalliativeandendoflifecareistoincreasetheunderstandingofthepublic,healthandsocialcareplannersandserviceprovidersthatpalliativeandendoflifecareisanintegralpartofthewiderhealthandsocialcaresystemwhichcansupportindividualchoiceandimprovequalityoflifeforthosewithlife-limitingconditions.
3.3 Theperceptionthatpalliativeandendoflifecareissetapartfromotheraspectsofhealthandwell-being-perhapsseenasasignof“treatmentfailure”byclinicians-emphasiseshowlackofawarenesscanleadtoanegativeimpressionofthepotentialandvalueofsuchcare.
3.4 Improvedpublichealth,medicaladvancesandthesuccessfulmanagementofdiseasehavesignificantlyprolongedlifeexpectancy,withtheresultthatincreasinglyoverrecentdecadeswehavedistancedourselvesfromdeathanddying.Subsequentlypeoplearelessopenorcomfortablewithdiscussingdeath,dyingorbereavementwiththeeffectthattheseareoftenseenasthelasttaboosofoursociety.Increasingthelevelofpublicandprofessionalawarenessandstimulatingdiscussionaroundoptionsandpreferencesforpalliativeandendoflifecarewillrequireaculturalandbehaviouralshiftinhowpalliativeandendoflifecareisperceivedandaccepted.
Living MattersDying Matters
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SECTION 3Developing Quality Palliative and End of Life Care
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Exemplar 1: MarieCurieStories:ADVDfocusingonhowpatientsandfamilies copewithlife-changingevents
Thisoffersavaluableobservationofreallifecareencompassingrichnarrativesfrompatientsandcarers.Theresourcewasdesignedtobeusedtosupporttrainingandeducationforpeopleworkinginanysettingwherepatientswithlife-limitingorlifethreateningconditionsarebeingcaredfor.Itaimsto:
• Deepenlearners’understandingoftheimpactofseriousillnessonthelivesofpatientsandfamilies;
• Detectandunderstandthecommunicationandinformationneedsofpatientsandfamilies;
• Increasetheirknowledgeofpalliativecareandhospiceservices.
Source:MarieCurieHospice,Belfast
3.5 Forthosereceivingpalliativeandendoflifecare,increasedawarenessandunderstandingofthepurposeandbenefitsofsuchcarecanprovidepatients,familiesandcarerswiththeknowledgeandconfidencetheyneedtotakeanactiveroleindecisionsabouttheircare.Thiscanincludetheidentificationofappropriateservicesandmanagementofthephysical,psychologicalandspiritualdemandsoflivingwithaprogressiveillness.Publicawarenessofpalliativeandendoflifecareshouldthereforebepromotedtoincreaseunderstandingandcounterthenegativitythatcanbeassociatedwithit.
Education, Training and Development
3.6 Serviceimprovementwithinpalliativeandendoflifecareisdependentonhavingacompassionate,skilled,knowledgeableandcompetentworkforce.Theimportanceofflexibleandaccessibleeducationandtraininginpalliativeandendoflifecarehasbeenrepeatedlyemphasisedatbothnationalandregionallevel21,22.
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3.7 Qualityassurededucationandtrainingshouldbeinplacetoensuretheappropriateknowledge,skillsandcompetencesareavailablewithintheworkforcetoenablehighqualitypalliativeandendoflifecaretobeplanned,deliveredandevaluatedacrossallcaresettingsandtoinformpersonalappraisal.Educationandtrainingshouldrecognisethediversityofpeoplereceivingpalliativeandendoflifecareandacknowledgethatindividualswillhavedifferentneedsandexpectationsofcarethatmaybeinfluencedbytheirbackground,culture,beliefsandpersonalcircumstances.
3.8 Collaborationbetweenpalliativeandendoflifecareserviceprovidersandpalliativecareeducatorsisessentialtodesigneffectiveeducationandtrainingprogrammesthatmeetidentifiedworkforceneedandpromoteacultureofcontinuousprofessionaldevelopment.Fourareashavebeenidentifiedasessentialforworkforcedevelopmentinpalliativeandendoflifecare.Theseare:
• Communication;• Assessmentofneedsandpreferences;• Advancecareplanning;• Symptommanagementofthemostcommonsymptoms23.
Commonsymptomscaninclude:pain,nausea&vomiting,agitation,anorexia/cachexiasyndrome(ACS),fatigue,andbreathlessness.
3.9 Toensurethattheassociatedgenericskillsareinplacetoprovidequalitypalliativeandendoflifecareacrossallcaresettings,palliativeandendoflifecareshouldbecomeacoreelementofallpre-registration,post-registrationandclinicaleducationprogrammesforallhealthandsocialcarestudents.
3.10 TheWhitePaper“Trust,AssuranceandSafety–theRegulationofHealthProfessionalsinthe21stCentury”(2004)24,proposesasystemforrenewalofregistration.Communicationskillsarelikelytobeanimportantcomponentofthisprocess.Regulatorsofallprofessionswillwishtoensurethattheskillsrequiredforeffectiveandsensitivecarearesustainedandkeptuptodatethroughoutcareers.
Living MattersDying Matters
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SECTION 3Developing Quality Palliative and End of Life Care
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Provision of Education and Training
3.11 Educationandtraininginpalliativeandendoflifecarecanbeprovidedthroughavarietyofmedia.Professionalswhospecialiseinpalliativecareforexample,areakeyresourceforprovidingformalandinformallearningtonon-specialistcolleagues.
3.12TheHospicemovementhasalsocontributedtotheadvancementof
professionaldevelopmentthroughresearchandastructurededucationprogrammeinpalliativeandendoflifecare-forexample,throughtheprovisionofeducationandtrainingsuchasthePrincessAliceHospiceCertificateinEssentialPalliativeCare.
Exemplar 2: ThePrincessAliceHospiceCertificateinEssentialPalliativeCare availablethroughtheNorthernIrelandHospice
Thiseightweekdistancelearningprogrammeonlyrequiresattendanceattheintroductorysessionandthefinalassessmentdayandcurrentlyrunstwiceeachyear.
Thisprogrammeofstudyandassociatedassessmentsaimsto:
• Provideparticipantswithanopportunitytodemonstratetheirabilitytodevelopclinicalpracticebyintegratingthiswithup-to-dateandrelevanttheoreticalpalliativecareknowledge.Particularattentionispaidtotheholisticpatientandfamilycentrednatureofpalliativecare,includinggriefandbereavement;
• Provideopportunitiestoparticipateinsupervised,personalandprofessionalreflectionaboutthemanagementofapatientwithpalliativecareneeds;
• Developtheabilitytochangeclinicalpracticeinthelightofincreasedtheoreticalknowledgeandpersonalreflection.
Source:NorthernIrelandHospice
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3.13 Multi-disciplinaryandmulti-professionallearningopportunitiesshouldalsobedevelopedwhichbuildontheinter-disciplinaryethosofpalliativeandendoflifecare.ThisisparticularlysignificantwhenimplementingpalliativeandendoflifecaretoolssuchastheGoldStandardsFramework25ortheLiverpoolCarePathway26whicharedependentoneffectivemulti-disciplinaryteamworkandrequirerobusttraining,inductionandmentorship.Inaddition,theprofessionaltrainingandaccreditationofchaplains,socialworkersandcarehomesupportstaffinpalliativeandendoflifecareknowledgeandskillsshouldalsobedeveloped.
Exemplar 3: TheNorthernIrelandCancerNetwork(NICaN)Multi-disciplinary CompetencyFrameworkforAdultPalliativeandEndofLifeCare
AMulti-disciplinaryCompetencyFrameworkforAdultPalliativeandEndofLifeCarehasbeendevelopedbytheEducationWorkStrandoftheNICaNSupportiveandPalliativeCareNetwork27.TheFrameworkidentifiesthecompetenciesrequiredbyallhealthandsocialcareprovidersandcanbeinterpretedandappliedtoalldisciplines,acrosspublic,independent,communityandvoluntarysectors.
ThecompetenciestobeachievedwithintheFrameworkareappropriatetoalladultpopulationsrequiringpalliativeandendoflifecareregardlessofdiagnosis,cultureorneed.TheFrameworkfocusesondeliveringtwolevelsofpalliativecare,generalistandspecialist,providingguidancetocommissioners,academicinstitutions,serviceprovidersandhealthandsocialcareprofessionalswithregardtoprinciplesofgoodpracticeandequitablestandardsofeducationandtrainingacrossNorthernIreland.Itprovidesarobusttooltoestablisheducationalstandardsforgeneralistandspecialistprovidersofpalliativeandendoflifecare.ImplementationofthisFrameworkwillenableauditsofworkforceneedswithregardtopalliativeandendoflifecareeducationandtraining.
Source:www.cancerni.net/publications/educationframeworkforgeneralistspecialistpalliativecare
Living MattersDying Matters
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Exemplar 4:Demonstratingdevelopmentofmulti-professionaltraining
TheSouthEasternHSCTrustSpecialistPalliativeCareTeamrecognisedaneedforallstafftohaveanawarenessofpalliativecare.Amulti-professionalauditofTrustwidepalliativecaretrainingneedsinitiatedthedevelopmentofamulti-professionalprogrammeoftraining.
Thecontentincluded:• Whatispalliativecare?• Accesstospecialistpalliativecareservices;• Communication;• Userinvolvement;• Symptommanagement;• Emergenciesinpalliativecare;• Endoflifecareandbereavement.
Thismulti-professionaltrainingprogrammehasbeenwellattendedandevaluatedandhasbecomerecognisedasacoretopicforallhealthcareprofessionalsworkingintheTrust.EachmemberoftheSpecialistPalliativeCareTeamcontributestothedeliveryofthisprogramme.
Source:SouthEasternHSCTrust
Exemplar 5: PalliativeCareLinkNurseProgrammes
Palliativecarelinknursesareidentifiedasthosewithaspecialinterestintheprovisionofpalliativecare.AnumberoflinknurseprogrammeshavebeenestablishedinTrustsacrossNorthernIreland.
WithinWesternHSCTrustapproximately40nursingstaffacrosscommunity,acute,chronicdiseasemanagers,rapidresponseteamsandsitespecificnursesmeetevery4monthstoshareevidenceofgoodpractice,toexploreissuesarisingandenhancepartnershipworkingforpalliativecarepatientsandtoenhanceknowledgeandskillsspanningacrossallcaresettings.Theprogrammeischanginganddevelopingpracticee.g.throughtheproductionofworkrelatingtocarepathwaysfornon-malignantdiseases.
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AfurtherlinknurseprogrammetargetsrepresentationfromeachoftheprivatenursinghomesinthesouthernsectoroftheWesternTrust.Similarprogrammeshavebeendevelopedforsocialworkersandalliedhealthprofessionals(AHPs).Theprogrammesexaminethebasicprinciplesofpalliativecare,thecareofthedyingpathway,theroleofvoluntaryorganisations,socialconsiderations,communicationandloss,griefandbereavement.
Source:WesternHSCTrust
Specialist Palliative and End of Life Care Education and Training
3.14 Accesstoadvancededucationandtrainingisessentialtoensurethecontinuousacquisitionofthespecialistlearningandskillsrequiredtosupportthedevelopmentofmulti-disciplinaryspecialistpalliativecareteams.Whilstspecialisteducationisavailabletodoctorsandnurses,thiswillneedtobeextendedwhereappropriatetoincorporateotherteamspecialistse.g.alliedhealthcareprofessionals,socialworkers,pharmacists,psychologistsandchaplains.
Education and Training for Carers, Families and Communities
3.15 Itisimportanttorecognisetheuniquecontributionofcarers,familiesandcommunitieswhichprovidevaluableservicesthatcomplementthecareprovidedbypaidpalliativecareprofessionals.Communitybasedvolunteersforexamplecanprovidetransport,helpwithcooking,washingandironingandproviderespitetocarersaswellascompanionshipandbereavementsupport.
3.16 Asmorepalliativeandendoflifecareisprovidedinthecommunity;families,carersandlocalcommunities,includingvolunteers,areessentialpartnersincaringanditiscrucialthattheyhavetheconfidenceandcompetencetotakeontheserolesandresponsibilities.
Living MattersDying Matters
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SECTION 3Developing Quality Palliative and End of Life Care
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3.17 Thelevelofcompetencerequiredbyfamilies,carersandvolunteerswillbedifferentineachsituationandshouldbedeterminedbyongoingassessmenttoidentifyindividualneedsandcapabilities.Educationandsupportshouldbeavailabletofamilies,carersandvolunteersonanindividualandongoingbasisastheirneedsevolveandinaformatandsettingthatisbestsuitedtothem.Programmesarealsoavailablewhichhavebeendevelopedwithlife-longlearningprinciplesandtheseshouldbeofferedwhereitisconsideredbeneficialtodoso.
Research and Development
3.18Researchanddevelopmentplaysakeyroleinimprovingpalliativeandendoflifecare.Academicresearchers,serviceprovidersandcliniciansshouldestablishpartnershipstodevelopaco-ordinatedapproachwhichbuildsontheexistingbodyofknowledge.TheproposedAllIrelandInstituteforHospiceandPalliativeCareisanexampleofhowacollaborativeandcollegiatepartnershipmightwork.Researchanddevelopmentwillinformfuturepolicy,planninganddelivery,driveupqualityandimproveoutcomesinpalliativeandendoflifecare.Mechanismsshouldbeinplacetoensureresearchfindingsaretranslatedintotimelyandstandardisedimprovementsforpatients.
3.19 Abranchofresearchfocusingontransitionforyoungpeoplewithpalliativecareneedsmovingfromchildren’stoadultservicesshouldbeidentifiedwithintheoverallresearchprogramme.Therehasbeenanumberofstudiesofdisabledyoungpeopleandthosewithcomplexhealthneeds,includingseveralconditionspecificstudies,whichhaveproducedfindingswhichhavesomerelevanceforyoungpeoplewithpalliativecareneeds28whichcouldbefurtherdeveloped.
Recommendations
1. Opendiscussionaboutpalliativeandendoflifecareshouldbepromotedandencouragedthroughmedia,educationandawarenessprogrammesaimedatthepublicandthehealthandsocialcaresector.
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2. Thecoreprinciplesofpalliativeandendoflifecareshouldbeagenericcomponentinallpre-registrationtrainingprogrammesinhealthandsocialcareandinstaffinductionprogrammesacrossallcaresettings.
3. Mechanismstoidentifytheeducation,developmentandsupportneedsofstaff,patients,families,carersandvolunteersshouldbeinplacetoallowperson-centredprogrammestobedevelopedwhichpromoteoptimalhealthandwell-beingthroughinformation,counsellingandsupportskillsforpeoplewithpalliativeandendoflifecareneeds.
4. Arangeofinter-professionaleducationanddevelopmentprogrammesshouldbeavailabletoenhancetheknowledge,skillsandcompetenceofallstaffwhocomeintocontactwithpatientswhohavepalliativeandendoflifecareneeds.
5. Arrangementsshouldbeinplacewhichprovidefamiliesandcarerswithappropriate,relevantandaccessibleinformationandtrainingtoenablethemtocarryouttheircaringresponsibilities.
6. Acollaborativeandcollegiateapproachtoresearchanddevelopmentshouldbeestablishedandpromotedtoinformplanninganddelivery,driveupqualityandimproveoutcomesinpalliativeandendoflifecare.
Living MattersDying Matters
37
SECTION 4Commissioning Quality Palliative and End of Life Care
Living MattersDying Matters
4.1 Highqualitypalliativeandendoflifecaredependsoneffectivecommissioningarrangementswhichsupportthedevelopmentofpalliativeandendoflifecareserviceswithinthewiderpublichealthagenda.Theseshouldalsobuildonthecreativepartnershipsandcollaborationswhichalreadyexistbetweenpublic,independentandcommunityandvoluntaryserviceprovidersbothregionallyandinlocalcommunities.
4.2 Theroleofcommissioningistosecurethebestpossiblehealthandsocialcarewithinavailableresources.Drivingupthequalityandavailabilityofpalliativeandendoflifecaresothatitisresponsivetopatientneedsandpreferencesisakeyaspectofthehealthandsocialcarecommissioner’srole.
4.3 Effectivecommissioningofqualitypalliativeandendoflifecarewilldependonthedevelopmentofrobustservicespecificationswhichidentifytheshortandlongtermobjectivesoftheservicetobedelivered,defineperformanceandqualitystandardsandspecifyhowtheywillbemeasured.
4.4 Anumberofelementsmakeforgoodqualitycommissioningofpalliativeandendoflifecareincluding:
• Effectiveinformationsystems;• Increasedpersonalandpublicinvolvement;• Thedevelopmentandadoptionofcarepathwaysacrossconditions;• Commonguidelinesforthemanagementofsymptomsandsituations;• GenericpalliativecarestandardswithintheServiceFrameworksfor
NorthernIrelandthatsetoutthestandardswhichwillbeexpectedofhighqualitypalliativeandendoflifecare;
• Theadoptionofthecommunity-facingintegratedservicemodelasdescribedwithintheregionalmodelforpalliativeandendoflifecare29;
• Performanceobjectives,includingPrioritiesforActiontargets,whichsetoutcommonmethodsofmeasuringqualitytoensureservicesmeetwhatisrequired;
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• Arobustinfrastructuretobringpatients,familiesandcarersalongsidepublic,independent,communityandvoluntarysectorsandinsodoingenableallorganisationstoworkcollaborativelytodesign,deliverandimprovepalliativeandendoflifecareservices.
4.5 Theseelementsarediscussedinmoredetailinthefollowingparagraphs.
Effective Information Systems
4.6 Alackofcomprehensiveinformationaboutthepalliativeandendoflifecareneedsofnon-cancerpatientshasmeantthatinthepast,carehaspredominatelybeenplannedandresponsivetothoselivingwithcancer.Improvingpalliativeandendoflifecareservicesacrossallconditionsrequiresthatcommissionersareinformedby,andrespondto,individual,communityandregionalneeds,monitoredovertimebycontinuousassessment.Informationsystemsshouldbeabletosupportthecollectionofqualitativeandquantitativedatathatwillinformtheevidencebaseforfuturecommissioning,planninganddeliveryofservices.
Personal and Public Involvement
4.7 Personalandpublicinvolvementisbasedontheprinciplethateffectiveserviceuserandpublicinvolvementiscentraltothedevelopmentanddeliveryofsafe,highqualityservices.GuidanceisalreadyinplacetosupportHSCorganisationsinstrengtheningandimprovingserviceuserandpublicinvolvementintheplanning,commissioning,deliveryandevaluationofservicesaspartoftheirclinicalandsocialcaregovernancearrangements30.
Exemplar 6: PalliativeCareFocusGroup
TheSouthernHSCTrustisdevelopingaprocessofreformandmodernisationforpalliativeandendoflifecareinresponsetoPrioritiesforActiontargets.AspartofthisprocessafocusgroupwasarrangedsothattheTrustcouldhearserviceuserstoriesabouttheirexperiencesofcurrentpalliativecareservicesandusethelearningtoshapethefutureservices.
Living MattersDying Matters
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Keystaffworkinginpalliativecareserviceswereaskedtorecruitserviceuserstoparticipateinthefocusgroup.EightServiceUsersandCarerswererecruitedandthefocusgrouparrangedatatimeandvenuethatsuitedtheserviceusersandcarers.Aflexibleapproachwasusedcombiningpatientstoriesandstructuredtopics.
Thefollowingtopicswerediscussed:
• Introductionincluding:serviceuserandcarerinvolvement,qualityandstandards,learningtoshapeservices,learningfromexperience;
• Experienceofservicesingeneral–positive/negative;• Viewofstaffroles;• Expectationspriortodischarge(ifrelevant);• Empowerment/SelfManagement;• Accesstoservices;• Information/Communication;• Equipment.
Opennessandhonestywereencouragedthroughouttheprocess.
Thefindingsfromthefocusgrouphavebeencollatedandasummaryreportproducedtodisseminatetoallparticipantswhichwillincludekeyactionstobetakenasaresultoftheinformationprovidedbytheserviceusersandcarers.
Source:SouthernHSCTrust
The Development of Integrated Care Pathways
4.8 IntegratedCarePathwayssetoutthestepsinthecareofapatientwithaspecificconditionanddescribetheexpectedprogressofthepatientastheirconditionprogresses.Carepathwaysaimtosupporttheintegrationofclinicalguidelinesintoclinicalpracticewhilstalsopromotingbettercommunicationwiththepatientbygivingtheminformationabouthowtheircarewillbeplannedandprogressedovertime.
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4.9 Overrecentyearsthemanagementofchronicconditionshasbeenimprovedbythedevelopmentofintegratedcarepathwaysacrossawiderangeofconditions;howeverthereisaneedtorecognisethecontinuumofpalliativeandendoflifecareasauniqueandultimateperiodwithinaperson’spathwayofcare.Palliativeandendoflifecareshouldbeintegratedwithinthepatient’scarepathwaysothattheircareisplannedandseamless.TheadoptionoftheModelforPalliativeandEndofLifeCare(outlinedinparagraph2.18)acrossallconditionscansupporthealthandsocialcareplannersandproviderstoidentifybestexpectedoutcomesforpatients,familiesandcarers.TheimplementationofthisModelisconsideredinmoredetailinSection6.
Common Clinical Guidelines for the Management of Symptoms
4.10Clinicalguidelinesreflecttheevidencebaseforbestpracticeinpalliativeandendoflifecare.Theyhelpensurethatconsistentandhighstandardsofpatientcareandexperienceareinplacebyprovidinganexpectationofstandardisationwithinparticularareasofclinicalactivity.Aregionalapproachtoguidelinedevelopmentisadvocatedtoreducetheduplicationofeffortandenhancecontinuityandequityinthecommissioninganddeliveryofcare.Clinicalguidelinesshouldbemulti-disciplinaryintheirapproachandincludepatientinvolvementintheirdevelopmentandaudit.
Exemplars 7+8:Demonstratingdevelopmentofregionalguidelines
Regional syringe driver prescription chart template for Northern IrelandANICaNmulti-disciplinarysteeringgroupwassetuptoproducearegionalsyringedriverprescriptionchart.AsaresultofascopingexerciseandtwoextensiveconsultationsthroughoutNorthernIreland,threecharttemplateswereproduced:
• aregionaltemplateforsyringedriverprescriptionandadministrationchart;• acontinuationchartforprimarycare;• aprescriptionandsubcutaneousadministrationofmedicinesfor
breakthroughsymptomsforprimarycare.
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ThesetemplateswereendorsedbytheNICaNBoardinFebruary2009andwerecommendedbytheDHSSPSinJune2009.Thetemplatesareofferedtoprimaryandsecondarycareorganisationsforlocalapprovalandimplementation.
Implementationofthesetemplateswill:• facilitatesaferprescribingandadministrationthroughstandardisation
(healthcareprofessionalsfrequentlyrotatethroughorworkindifferentlocationsinprimaryandsecondarycare.Patientsoftenmovebetweencaresettingsandlocalities);and
• facilitatetrainingofappropriatehealthcareprofessionalsacrossHealthandSocialCareorganisations.
Source:NICaN
Regional symptom control guidelines for patients with end-stage chronic heart failure in Northern IrelandDevelopedbyaregionalmulti-disciplinarysub-group,theguidelinesincludecriteriabywhichaprofessionalcandecideifthepatient’smanagementshouldincludeapalliativeperspective.Importantissuessuchasadvancedplanning,bereavementcareandthevitalroleofcarersareincluded.Theguidelinesaimtopromoteaseamlessserviceforchronicheartfailurepatientsalongthepalliativepathwayandamoreco-ordinatedapproachwithgoodclearworkingrelationshipsbetweenhealthcareprofessionalsinvolved.
Source:NorthernIrelandCardiacServicesNetwork
Generic Palliative Care Standards
4.11 Thegenericstandardsforpalliativeandendoflifecare,developedfordiseasespecificServiceFrameworks(setoutinFigure6),focusonidentificationandassessmentofcareneeds,accesstointegratedandresponsiveservices,opencommunication,themanagementofsymptomsandtheavailabilityofchoiceincareprovisionasessential
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elementsofqualitycare.Commissioninghealthandsocialcareagainsttheservicestandardswilldriveupthequalityofcareacrossallsettingsbyensuringthatthestandardsbecomeembeddedwithincommissioningservicespecificationsaswellassupportingauditsystemstomonitorqualityimprovement.
Figure 6: GenericStandardsforPalliative&EndofLifeCare(DHSSPS)
Standard 1 Standard 2 Standard 3
HealthandSocialCare Patients,carersand Peoplewithadvancedprofessionals,in familieshaveaccessto progressiveconditions,consultationwiththe responsive,integrated theircaregiversandpatient,willidentify, serviceswhichareco- families,willbeassessandcommunicate ordinatedbyan informedaboutthetheuniquesupportive, identifiedteam choicesavailabletopalliativeandendof memberaccordingto thembyanidentifiedlifecareneedsofthat anagreedplanof teammember,andperson,theircaregiver(s) care,basedontheir havetheirdignityandfamily. needs. protectedthroughthe managementof symptomsand provisionofcomfort inendoflifecare.
Regional Community-Facing Palliative Care Model
4.12Thegenericpalliativecarestandardshaveinformedthedevelopmentofaregionalcommunity-facingmodelforthedeliveryofpalliativecare31.Thismodelofcare,whichwasdevelopedundertheauspicesofNICaN’sSupportiveandPalliativeCareNetwork,ispartofawiderprogrammeofworktoreformandmodernisepalliativeandendoflifecareinNorthernIreland.
4.13 Theregionalcommunityfacingmodelprovidesaframeworkforthecommissioninganddeliveryofcarethatiscentredonthepatient,their
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familyandcarers.Themodelfocusesontheprovisionofpalliativeandendoflifecarewithinthecommunityunderpinnedbysupportivehospitalandspecialistprovision.Themodel’scorevaluesincludingequity,respect,empowermentandchoice,reflecttheprinciplesofthegenericpalliativecarestandardsaswellasthestandardssetoutin“ImprovingthePatientandClientExperience”32.Sixcorecomponentsformthebasisofthemodel.ThesearelistedbelowandareincorporatedthroughoutthisStrategy:
• ProfessionalandPublicAwareness;• IdentificationofPalliativeCare;• HolisticAssessment;• IntegrationofServices;• Co-ordinationofCare;• EndofLifeCareandBereavementCare.
Priorities for Action Target
4.14 ThePrioritiesforAction(PfA)targetfor2009-2011providesakeyvehicletoguidecommissionersintheplanningofpalliativeandendoflifecareservicesandserviceprovidersinhowtheseservicesshouldbedesignedandimplemented.ThePfAtargetstatesthat“byMarch2011,Trustsshouldestablishmulti-disciplinarypalliativecareteams,andsupportingserviceimprovementprogrammes,toprovideappropriatepalliativecareinthecommunitytoadultpatientsrequiringsuchservices”.TosupporttheachievementofthistargetaRegionalServiceImprovementManagerforpalliativeandendoflifecarehasbeenappointedtoliaisewiththeHSCBoardandTrusts.AllTrustswillbemonitoredtoassesstheirprogresstowardsandachievementofthisPfAtarget.
Recommendations
7. AleadcommissionershouldbeidentifiedforpalliativeandendoflifecareatregionallevelandwithinallLocalCommissioningGroups.
8. Systemsshouldbeinplacewhichcapturequalitativeandquantitativepopulationneedsrelatingtopalliativeandendoflifecare.
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5.1 Deliveringhighqualitypalliativeandendoflifecarerequiresamixedeconomyofcareprovisionwithpublic,independent,communityandvoluntarysectororganisationsworkingtogetherinpartnershiptoprovideintegratedservicessuchasthosesetoutinFigure7.Palliativeandendoflifecareservicescanbedeliveredeitherbygeneraliststafforbystaffwhospecialiseinpalliativeandendoflifecare.
Figure 7:Examplesofcareserviceswhichdeliverpalliativeandendoflifecare
• Primarycare • Specialistclinicalinterventions• Accesstoinformation • Daycare• Accesstoequipment • Acutemedicalcare• Districtnursing • Pharmacy• OccupationalTherapy(OT) • Specialistpalliativecare• Personalsocialcare • Financialadvice• Physiotherapy • Out-of-hourscare• Psychologicalsupport • Dietetics• Carersupport • Ambulance/transport• Spiritualandchaplaincysupport • Independentsector• Respitecare • Communityandvoluntaryservices• Complementarytherapies • Speechandlanguagetherapy
Oftenacombinationoftheseserviceswillbedeliveredthroughamulti-disciplinaryteamapproachwhichisdrawnaroundthepatientandtheircarersasindividualneedsdictate.
Delivering General and Specialist Palliative and End of Life Care
General Palliative Care
5.2 Generalpalliativeandendoflifecareisdeliveredbymulti-disciplinaryteamsinprimaryandcommunitycaresettings,hospitalunitsandwards.ThisisthelevelofcarerequiredbymostpeopleandisprovidedbynonpalliativeandendoflifecarespecialistsincludingGeneralPractitioners,DistrictNurses,AlliedHealthProfessionals(AHPs)andSocialWorkers.
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5.3 Generalpalliativeandendoflifecareisalsoprovidedbyhealthandsocialcareprofessionalswhohaveexpertiseinparticularhealthandsocialcarefields,suchasrespiratorydisease,heartfailure,renaldisease,neurologicalconditionsanddementia.Expertswithintheseconditionsarepivotalinrecognisingwhenpalliativeandendoflifecareisneeded.
5.4 Generaliststaffshouldhaveaccesstopalliativeandendoflifecareeducationandtrainingthatwillallowthemtounderstandandapplytheprinciplesofhighqualitycare.Theyshouldalsohaveaccesstospecialistpalliativecareadviceandservices,forexample,ifapatient’sconditionexacerbates.Oftenacollaborativeapproach,suchasmulti-disciplinaryteammeetingsorinformaldiscussions,willenablemutuallearningandasharingofknowledgeandexperiencebetweenprofessionalsandspecialties.
Exemplar 9: Demonstratingsharedlearningacrossspecialityareastomeet theneedsandprioritiesofanindividual
Traditionally,theapproachappliedtopeoplewithalearningdisabilitywhohadpalliativecareneedswasadhoc,withcrisisinterventionbeingthe‘norm’.Palliativecarewasusuallyappliedonlytothosewhohadaggressivecancers,themajorityofwhomwerenursedanddiedelsewheredespiteinstitutionslikeMuckamoreAbbeyHospitalbeingtheirlongtermplaceofresidence.
Intherecentpast,anindividualwastransferredtothelocalacutesectorhospitalforinvestigationsandadiagnosisofcancerwasmade.ThefamilyrequestedthatshebenursedinherownwardinMuckamoreAbbeyHospitalwhereshehadresidedformanyyears.RelationshipswerequicklyestablishedwiththeBelfastHSCTrust,OncologyandPalliativeCareTeam,whoprovidedclinicalsupportandtrainingaroundendoflifeissuesincludingmanagementofpainandsyringedrivers.ThisapproachenabledstafffromMuckamoreAbbeyHospitaltoprovidehighqualitypatient-centredcarewhichledtothepatient’sdignifieddeathintheplacemostfamiliartoherandwithpeoplesherecognisedandtrusted.
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Learninggainedasaresultofthispatientepisodeacrossthelearningdisabilityandpalliativeinterfacehasservedasacatalystforanumberofservicedevelopmentprojects.Theseinitiativesareaimedathighlightingthepalliativecareneedsofthisveryvulnerablepopulationandenhancingtheeducationofthemulti-professionalteamsacrossspecialties.Encouragingandsupportingacollaborativeapproachwhichembracestheknowledgeandskillsofeachspecialtyinvolvedensurespatientswithlearningdisabilityreceivethehigheststandardofpalliative/endoflifecarepossible.
Source:BelfastHSCTrust
Specialist Palliative Care
5.5 Specialistpalliativeandendoflifecareisthemanagementofunresolvedsymptomsandmoredemandingcareneedsincludingcomplexpsychosocial,endoflifeandbereavementissues.Thisisprovidedbyspecialistpersonnelwithexpertknowledge,skillsandcompetences33.Itisdeliveredbyspecialistmulti-disciplinaryteamsdedicatedtopalliativeandendoflifecare.Theresponsibilitiesofspecialistpalliativecareprofessionalswillincludethephysicalmanagementofpainandothersymptomsandtheprovisionofpsychological,socialandspiritualsupporttoindividualsandtheirfamilies.
5.6 Membershipofspecialistpalliativecareteamsshouldincludedoctors,nurses,pharmacists,alliedhealthprofessionalsaswellasnon-clinicalmemberssuchassocialworkstaff,chaplains,counsellorsandvolunteers.Thiswillenablepatientstoachievetheiroptimumqualityoflifethroughholisticsupportandrehabilitation.Sharingknowledgeandexpertiseacrossconditionswithotherspecialistandgeneralistcolleagues,includingtraininganddevelopmentopportunities,shouldbeacentralelementtotheirrole.
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5.7 Specialistpalliativecareisprovidedinfourmainways:
• Inpatienthospiceandspecialistpalliativecareunits(NorthernIrelandhas4adulthospices);
• Hospital–basedservices,wheremulti-disciplinarypalliativecareteamsworkwithpatientsinwardsandclinics;
• Communityteams,whichprovidespecialistadviceandworkalongsideapatient’sownGPpracticeteamsenablingspecialistcaretobeprovidedinthepatient’shomeorcarehome;
• Daycare,whichenablespatientstocontinuelivingathomewhilehavingaccesstodayfacilitiesprovidedbyamulti-disciplinaryhealthandsocialcareteam.
Palliative and End of Life Care – The Adoption of a Case Management Approach
5.8 Designingasystemforthedeliveryofproactivecareforpeoplewithpalliativeandendoflifecareneedsischallenging.Oneresponsetothisistheadoptionofacasemanagementapproach.Casemanagementprovidesamoreintensivelevelofsymptommanagementandclinicalsupporttothemostvulnerablepatientswithchronicconditions,helpingpeopletobecaredforintheirownhomesandenablingthemtoexperienceabetterqualityoflife.Increasinglypeoplewithchronicconditionsreceivepalliativecareasanintegralpartoftheircasemanagementarrangements.
5.9 Patientswithchronicconditionsmayneedcaretobesustainedovermanyyearsandacrossorganisationalandprofessionalboundaries.Itisimportantfromtheperspectiveoftheindividual,theirfamilyandcarersthatcareisco-ordinatedanddoesnotbecomefragmented,confusingandoverwhelming,withdifferentpeopleresponsiblefordifferentpartsofcare.Thedevelopmentofthecasemanagerrolehassoughttoaddressthisandshapesandinformstheroleofthekeyworkerinendoflifecare.
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The Role of a Key Worker in End of Life Care
5.10 Ascomplexityand/ordeclinebecomeapparent,theneedforcaretobeplanned,organisedanddelivered,oftenacrosscaresettings,willrequiresignificantco-ordination.Theroleofakeyworkeristhereforecrucial.
5.11 Thekeyworkerisanidentifiedindividualwithresponsibilityforplanningandco-ordinatingpatientcareacrossinterfaces,(includingwithinandbetweencareteams),promotingcontinuityofcareandensuringthatthepatientandhealthandsocialcarestaffknowhowtoaccessinformationandadvice.Theroleofthekeyworkerwillbeto:
• Providepracticalandemotionalsupporttothepatientandfamily;• Provideapointofcontacttothepatient;• Actasapatientadvocateuptoandincludingtheendoflifeas
appropriate;• Co-ordinatetheendoflifecarejourneyand,whereappropriate,
ensureinterventionstakeplaceinatimelyfashion;• Provideinformation,whereappropriate,andensurethatitistimely
andtailoredtotheindividual’sneedsandunderstanding.
5.12Thekeyworkerislikelytobeidentifiedfromtheexistingteame.g.GeneralPractitioner,CommunityNurse,SpecialistNurse(palliativeorconditionspecific),SocialWorker,AHPorotherappropriateperson.Thekeyworkermaychangeovertimedependingonthenatureandcomplexityoftheconditionandthedisease/declinetrajectory.Itisimportantthatpatients,carersandfamiliesareengagedinthedecisionwhenkeyworkersareidentified.
5.13 Keyworkersshouldhaverole-specifictrainingtohelpthemperformthisco-ordinatingrole.Althoughtheidentifiedkeyworkermaychangeoverthecourseoftheindividual’sillness,itisimportantthatwherethereisachangeinpersonnelthisismanagedsensitivelyinvolvingthepatient,theirfamilyandcarers.
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A Care Pathway Approach for Transitional Care for Young People
5.14 Theconceptofacarepathwayapproachtocareisafeatureofhowqualitycarecanbeprovidedtochildrenandyoungpeoplewithlifelimitingconditions.
5.15 TheAssociationforChildren’sPalliativeCare(ACT)“TransitionCarePathway”(2007),“NICEImprovingtheOutcomesforChildren&YoungPeoplewithCancer”(2005)andDoH“BetterCare,BetterLives”(February2008)offerframeworksthroughwhichservicescanbeorganisedandintegratedtoprovideaseamlesstransitionfromChildren’stoAdultservicesforyoungpeoplewithlife-limitingorlife-threateningconditions.ItiscriticalthatChildren’sandAdultservicesareproactiveandengagedasearlyaspossibleintheyoungperson’sjourney.ACThasappointedaTransitionsCo-ordinatorforNorthernIrelandwhoseresponsibilityitistodriveforwardtheimplementationoftheTransitionCarePathway,ensuringthatprovidersandcommissionersfrombothchildren’sandadultservicesaresupportedandactivelyengaged.TheNorthernIrelandCo-ordinatorworkscloselywiththeRegionalInter-agencyImplementationGrouponChildrenwithComplexHealthNeeds.
5.16 Areport“DevelopingServicestoChildrenandYoungPeoplewith
ComplexPhysicalHealthcareNeeds”waslaunchedbytheMinisterforHealth,SocialServicesandPublicSafetyin2009.Thereportalsolaunchedthe“IntegratedCarePathwayforChildrenandYoungPeoplewithComplexPhysicalHealthCareNeeds”whichincludesendoflifecare.InNorthernIrelandtheCommunityChildren’sNursingServicehasresponsibilityfortheco-ordinationandimplementationoftheIntegratedCarePathwayonamulti-disciplinarybasiswithinHealthandSocialCareTrustareas.AcopyofthereportcanbefoundontheDepartment’swebsiteat:www.dhsspsni.gov.uk/complex_needs_report.pdf.
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Case Study 1: TransitionalPalliativeCare
Simon,ateenagerwithSpinalMuscularAtrophy(SMA)acknowledgedthathedidn’twanttoremaininchildren’sservicesbutfeltdauntedbythemovetotheunknown;hestressed;“I’mnotachild,neitheramIanadult,asfarashealthservicesareconcernedI’min‘Limbo’”.Simonhasatracheostomy,severescoliosis,usesnocturnalnon-invasiveventilation,isunabletowalkandhasverypoordexterityduetomusclewasting,hehasaportacathforivantibiotictherapy(asrequired)isemaciatedandhaspoorappetiteandcomplainsofacuteandchronicpainandseverefatigue.Heisdependentforallareasofcare,isstudyingforhis‘A’Levelsandenjoysasociallife.HisnominatedkeyworkerwastheChildren’sHospiceNurseSpecialist(CHNS),Simonandhisparentsaswellasprofessionalsfromchildren’sandadultserviceswereinvolvedfromtheoutsetinthetransitionprocess.StartingearlymeantthattheprofessionalsfromtheadultserviceshadanopportunitytomeetSimon,understandthesupportherequired,developrelationshipswithhimandhisparentsandlearnmoreabouthiscondition.Simon’sparentsneededtounderstandthathewasstartingtomakethedecisionsabouthiscare.Thechildren’sserviceprofessionalsneededtosupportthefamilyandtheiradultcolleaguesthroughandbeyondthetransitionprocess.
TodaySimonisalmost19,hisentirehomecarepackageisprovidedthroughadultservicesandtheIndependentLivingFund,heandhisparentsareveryhappywiththesupporttheyreceiveandalthoughtheystillfearhospitaladmissions;2recentlife-threateningepisodesweremanagedathome.
Source:NIHospice,Belfast
Managed Clinical Networks (MCNs)
5.17 MCNsseektobringtogethermulti-professional,multi-disciplinaryandcross-boundarystaff(includingdoctors,pharmacists,nurses,healthvisitors,physiotherapistsandoccupationaltherapists),organisationsfromprimary,secondary,voluntaryandindependentcare,aswellaspatients,familiesandcarers,toensurethedevelopmentofhighqualityeffectiveandequitableservices.
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5.18Atatimewhenincreasingnumbersofpeoplearelivinganddyingwithchronicdisease,identifiedownershipandleadershipofpalliativeandendoflifecarehasneverbeenmoreimportant.AsaManagedClinicalNetwork,theNICaNSupportiveandPalliativeCareNetworkhasalreadybeenakeydriverinprogressingthequalityofpalliativeandendoflifecareinNorthernIrelandbybringingtogethertheexpertiseofarangeofhealthandsocialcareplannersandproviderstoidentifyimprovementsinhowpalliativeandendoflifecarecanbedelivered.TheSupportiveandPalliativeCareNetworkcurrentlysitswithintheNICancerNetwork,howeverithassoughttoengageandencompassinterestandmembershipfromacrossarangeofchronicconditions.
5.19 Palliativeandendoflifecarehasbeenrecognisedasparticularlysuitableforamanagedclinicalnetworkapproachbecauseitisdeliveredinabroadrangeofcaresettingsbyawidespectrumofhealthcareprofessionals,andrequiresgoodcommunicationandco-operation.Anetworkapproachofferseconomiesofscale,valueformoneyandamorerobustapproachtogovernanceandallowskeytaskstobeundertakenatnetworklevelratherthanTrustsworkingindependentlytoproducethesameoutputs.
5.20Thesuccessfuldeliveryof,amongotheroutcomes,theserviceframeworkstandardsandthePfAtargetwillrequirecontinuedeffectiveregionalco-ordinationthatwillbringtogetherexpertiseacrossabroadrangeofsupportingworkstrands,whichincludeworkforceandeducation,researchanddevelopment,serviceplanning,serviceimprovement,governanceandaudit.Todeliveronanyofthesestrandsinisolationwillnotbesufficientandthebreadthofworkrequiredcanbestbedeliveredthroughanetworkapproach.
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Recommendations
9. Eachpatientidentifiedashavingendoflifecareneedsshouldhaveakeyworker.
10. Everychildandfamilyshouldhaveanagreedtransferplantoadultservicesinbothacutehospitalandcommunityserviceswithnolossofneededserviceexperiencedasaresultofthetransfer.
11. ThepotentialforaManagedClinicalNetworkshouldbeexploredtoensureleadership,integrationandgovernanceofpalliativeandendoflifecareacrossallconditionsandcaresettings.
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SECTION 6A Model for Quality Palliative and End of Life Care
Living MattersDying Matters
6.1 Section2introducedaModelforPalliativeandEndofLifeCare.ThecaremodelillustratedinFigure8,isanoverarchingsystemofcarewhichhasbeeninformedbytheregionalcommunity-facingmodel(outlinedinpara4.12and4.13)anddefinesanumberofkeystepswhich,whenimplementedeffectively,supportthedeliveryofqualitypalliativeandendoflifecare.Thisconceptofacontinuumofcareallowsforthealignmentofintegratedclinicalpathways,evidencebasedpracticetools,triggersandstandards.
Figure 8:AModelforPalliative&EndofLifeCare
6.2 Therecognitionthattreatmentintentisshiftingfromcurativetopalliativefocusestreatmentandcareontheneedsoftheindividualandtheirfamilyandcarersandthebestmanagementofdiseaseorsymptoms.Whilsttheremaybevariationinindividualexperiencesofillnessanddiseasetrajectory,thekeystepswithinthisPalliativeandEndofLifeCareModelsupporttheprovisionofhighqualitycareacrossawiderangeofconditions.Steps1to4areapplicabletoallpatientswithearlyidentifiedpalliativecareneeds.Steps1to6,spanningthewholemodel,encompassthecompletepalliativeandendoflifecarejourney.
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6.3 ThePalliativeandEndofLifeCareModelasavehiclefordeliveringqualitycareisconsideredinmoredetailbelow.
1 Discussion and Identification of Palliative and End of Life Care
6.4 Recognisingandtalkingaboutwhatmattersisimportantformostpeopleandthereisincreasingevidenceofpartnershipworkingbetweenindividualsandhealthandsocialcareprofessionalsindiscussingpalliativeandendoflifecareneedsandhowtorespondtothese.Thisincludesrecognitionoftheimpactoftheconditionontheindividualandtheirfamilyandcarers.Inshareddecision-making,professionalscommunicatetheevidenceofwhatisknownaboutaconditionwhilstrecognisingtheexpertiseofthepatientinexperiencingitandinbringingtothediscussioninformationaboutwhatismostimportantandpracticaltothemintheirsituation.Importantlysomepatientsmaychoosenottoenterintosuchconversationsandwherethisisthecasethisshouldberespected,althoughitshouldnotcompromisetheofferofserviceswhichbestrespondtoapparentneeds.
6.5 Allhealthandsocialcarestaffwhomayneedtoinitiatediscussionsabouttheneedforpalliativeandendoflifecareshouldhavethenecessaryknowledge,skillsandcompetencytodososensitively.Trainingincommunicationskills,suchasBreakingBadNews34oradvancedcommunicationskillstraining,isfundamentaltothis.
Case Study 2: APatient’sStrory
Emmawasa37yearoldlady,marriedwithatwoyearolddaughter.Shehadadvancedcolorectalcancerwhichhadspreadtoherliverwithassociatedcomplications.Emmahadnotappreciatedtheextentofherillnessandthespecialistpalliativecareteamwasaskedtoreviewhersymptoms.Thenextmorninghersymptomshadimprovedenoughforhertotalkaboutherillnessandpiecetogether“whereshewaswithherillness”likeajigsaw.Shehadalwayswantedtobeathometodiewhenthetimecame,buthadnotappreciatedthatshewassoill.Thespecialistpalliativecareteamhadfurther
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discussionswithherhusband,theGeneralPractitioner,thewardstaff,andthedistrictnurseandshewasdischargedhomethenextdaywithcommunitycaresupport.Shediedathomecomfortablytwodayslater.
Source:Apatient’sstory
6.6 Whenapersonhasbeenidentifiedasrequiringpalliativeandsubsequentlyendoflifecare,thisinformationshouldbeshared(withthepermissionofthepatient)withthoseimmediatelyinvolvedintheongoingcareandsupportofthepatient,familyandcarerstoensurethatallthoseconcernedhaveasharedunderstandingandconsistencyintheirapproach.Thisrequiresprotocolsforcommunicationacrosscareprovidersandcaresettings.
6.7 Communicationflowacrosscaresettingsiscrucialforhighqualitypalliativeandendoflifecareservicesbutisanareathatrequiresconsiderabledevelopment.Palliativecareregisters,whichlistidentifiedpatients,drawattentiontoindividuals,familiesandcarerswhomayrequireadditionalsupportandprioritisation.Suchsystemsarealreadyinplacewithinmostprimarycarepracticesandshouldbeextendedtoincludepatientswithnon-cancerpalliativecareneeds.PrimarycareInformationCommunicationTechnology(ICT)systemshoweverarenotalwayscompatiblewithTrustandotherICTsystems.Wherethisisthecasehowever,theinformationheldonapalliativecareregistershouldstillbeaccessibletocareprovidersandshouldalsobeavailabletoallout-of-hoursandambulanceservicestoimprovecommunicationoutsidenormalhours.
6.8 Needscodingprovidesamechanismtoenableawholesystemsapproachtoenhancingpalliativecareregisters.Colourcodingchartsand/orrecordscanhelphighlightthepotentialandactualneedsofindividuals.Thiscanenablecareproviderstoplanforcareneedsintheshortandlongerterm,basedonanassessmentoftheconditionofthepatientatanygiventime.Figure9showsanexampleofsuchacodingsystembasedonconsideringiftheclinicianswouldnotbesurprisedifthepatientweretodiewithinthenext12months.Itpromptsthe
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cliniciantothinkaboutappropriateaccesstobenefitsorincreasinglevelsofcareneedsasthepatient’sconditiondeterioratesandrecognisestheimportanceofbereavementsupport.
Figure 9: Needsbasedcoding–usingthe‘surprisequestion’topredictmain areasofneedandsupportrequired
Forfurtherinformation-http://www.goldstandardsframework.nhs.uk
2 Holistic Assessment
6.9 AkeyfeatureoftheModelforPalliativeandEndofLifeCareisanongoingholisticapproachtoneedsassessment.Aholisticassessmentofneedgoesbeyondthephysicalneedsoftheindividual.Itwillincludethesocial,mentalhealthandemotionalandspiritualwell-beingofthepatient,theirfamilyandcarers,aswellasrecognisingotherissuesthatmightimpingeonwellbeing,suchasfinancialandlegalconcerns.Followingthediagnosisofalife-limitingcondition,recurrentholisticassessmentofneedcandeterminethelevelofpalliativeorendoflifecarerequired,includingtheneedforonwardreferralwhichmaybenecessaryduringthecourseoftheindividual’sconditione.gclinicalpsychology,occupationaltherapy.
Assessment of Patient Needs
6.10 Theholisticassessmentofapatient’sneedscanbesupportedthroughtheuseofassessmenttoolssuchastheNorthernIrelandSingleAssessmentTool(NISAT)35andtheNICaNHolisticPalliativeCareAssessmentTool36(currentlybeingpiloted).Whatevermethodologyis
A –Blue ‘All’
From diagnosisstableYear plusprognosis
B –Green ‘Benefit’- DS1500
Unstable/advanceddiseaseMonthsprognosis
C –Yellow ‘ContinuingCare’
DeterioratingWeeksprognosis
D –Red ‘Days’
Finalterminal careDaysprognosis
Navy
‘After Care’
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usedforneedsassessment,staffshouldbeappropriatelytrainedintheuseofsuchassessmentsandbecompetenttocompletethemwithsensitivity.Inundertakingholisticneedsassessments,staffshouldtakeaccountofanyparticularcircumstancessuchasspecialneeds,cultureorlanguage.
6.11 TheMichaelReport,(2008)37remindsgeneralistandspecialistpalliativecareservicesoftheirstatutoryobligationsundertheDisabilityDiscriminationAct(1995)38tomake‘reasonableadjustments’toensurethatequitablecareandtreatmentarebeingdelivered.Thismaymeanmakingadjustmentsinrelationtocommunicationofinformationtoandfrompeopleatallstagesofthecareprocess,inparticularduringassessmentofneedandadjustmentsinrelationtotheprocessofobtainingandrecordingconsenttotreatmentandcare.
6.12Whencompleted,theholisticassessmentwillformthebasisofanindividualisedpatient-centredcareplan,agreedwiththepatientandaimedatplanninganddeliveringcarethatbestmeetstheircapacity/circumstancesandrequirements.
6.13 Regularreviewandconsistentrecordingofneedsareimperative,especiallywhenthepatient’s,theirfamily’sorcarers’wishesorcircumstanceschange.Anumberoftriggerscanprompttheinitialidentification,assessmentandrecordingofpalliativeandendoflifecareneedsandindicatehowtheseshouldbeaddressedandreviewed.Thesemayinclude:
• Diagnosisofaprogressiveorlife-limitingcondition;• Criticaleventsorsignificantdeteriorationduringthediseasetrajectory
indicatingtheneedfora“changeofgear”inclinicalmanagement;• Significantchangesinpatientorcarerabilityto“cope”indicatingthe
needforadditionalsupport;• Prognosticindicators;• Thesurprisequestion(clinicianswouldnotbesurprisedifthepatient
weretodiewithinthenext12months);• Recognitionofthelastdaysoflifewhendeathisexpected39.
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Exemplar 10: SAGE&THYME:Amodelfortraininghealthandsocialcare professionalsinpatient–focusedsupport
Developedbyamulti-professionalgroup,themodelconsistsof9stepstoenablestaffofallgradesandrolestofacilitatepatientstodescribetheirconcernsandemotionsiftheywishtodoso,toholdandrespectthoseconcerns,identifythepatient’ssupportstructures,andexplorethepatient’sownideasandsolutionsbeforeofferingadviceorinformation.
Source:PatientEducationandCounselling(July2009),NHSImprovements
Assessment of Family and Carer Needs
6.14 Familyandfriendshavetraditionallybeencrucialtotheprovisionofpalliativeandendoflifecare.Theunpaidcaretheyprovideincludeshelpwithdressingandbathing,domestictaskslikeshoppingandcleaning,emotionalsupport,transportandhelpwithmedications.
6.15 Familiesandcarerswilloftenhavetheirownneeds.UseoftheholisticNISATcarersassessmenttoolwillhelpensurethattheirneedsareidentified,recorded,addressedandreviewed.Thismayincludesign-postingfamiliesandcarerstoinformationandadvisoryservices,forexample,CitizensAdviceBureau.Whererespitecareisidentifiedasaneedforfamilyorcarersthisshouldbeaccessiblethroughavarietyofwaysincludingwithinthepatient’shomeorcarehome,inacommunityhospitalorwithinhospices.Respitecareshouldbeflexibleinitsaccessibility,ageappropriatetothepatientandavailableirrespectiveofcondition.Itofferscarersvaluableandnecessaryindependenttimeandpatientstheopportunitytoexperienceachangeofenvironmentandstimulus.
6.16TheCarersandDirectPaymentsAct(NorthernIreland)(2002)40imposesalegalrequirementupontheHealthandSocialCareServicestoadvisecarersoftheirstatutoryrighttoanassessmentoftheirneeds.Inresponsetoanassessment,HSCbodiesareempowered,withinlocalprioritiesandavailableresources,toprovidearangeofservicesdirectlytocarerstohelpthemintheircaringrole.Thelegislationalsobrought
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carerswithinthescopeofDirectPayments,whichcanbemadeinlieuofserviceprovisiontomeetassessedcareneeds.
Exemplar 11:NorthernIrelandHospiceCarers’Service
Thisserviceforcarersprovidespracticalinformationandadviceandofferscompanionshipandsupporttoreduceexhaustionandloneliness.Italsoofferscomplementarytherapieswhichcanreducestressandanxiety.TheHospiceruna6weeksupportprogrammeprovidingtheopportunityforcarersofpalliativepatientstocometogetherforoneeveningperweekon6consecutiveweeks.Theprogrammeistailoredtotheneedsofeachspecificgroup.Itgenerallycoversthefollowingthemes:
• Financesandbenefitseveningwithgeneraloverviewandonetoonetimewithafinancialadvisor;
• Symptommanagement,whattolookoutfor,whatservicesareinplacetohelppeoplemanageiftheyarecaringforsomeoneathome,whatmedicationsareusuallyused,etc;
• Pampereveningwithcomplementarytherapistsandinformationtohelpcarerslookafterthemselves;
• Copingstrategies,howandwhentohavethosedifficultconversationsarounddeathanddying,orfuneralarrangements,spirituality,communication.
Theprogrammeprovidesanopportunitytosocialiseandcementsupportiverelationships.
Source:NIHospice
Spiritual Needs and Care
6.17 Identifyingandaddressingthespiritualneedsofindividuals,familiesandcarersisanintegralpartofholisticcare.Attheendoflifestagehowever,religiousandspiritualneedsmayhaveaheightenedsignificanceandeveryopportunityshouldbemadetorespectandfacilitatethese
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individualneeds.Chaplainsandspiritualcareproviderswilloftenhaveakeyroletoplaywithinthepalliativecareteamatendoflifestageanditisimportantthattheyaresensitivetoandcompetentintheskillsnecessaryforprovidingspiritualcaretoindividuals,theirfamiliesandcarersaswellastostaffwhomaybeinneedofsupport.
Exemplar 12: NHSFifeSpiritualandPastoralCare
NHSFifehasadedicatedhospitalchaplaincyservicewhichcanfollowuppatientsafterdischargefromhospitalintothecommunityifneeded.Althoughnotspecialisedinpalliativecare,thechaplainsareanintegralpartofthespecialistpalliativecareteam,haveflexibleroleboundariesandviewtheirserviceasprovidingpastoral,emotional,psychologicalandspiritualsupportasneededbypatientsandfamilies.Theyareoncallviapager24-hoursaday.Thechaplainsprovidesupportforstaffonaone-to-oneorgroupbasisasneeded,forexample,ifwardstaffhavefacedaseriesofdeathsoraparticularlydifficultdeath.Theyalsoprovidetrainingcoursesforstaffontopicssuchasbreakingbadnewsandbereavementsupport.
Source:AuditScotland
3 Planning Palliative and End of Life Care across Care Settings and Conditions
6.18Careplanningcanhelppeopleexercisechoicebyworkinginpartnership
withhealthandsocialcareprofessionalstoimprovetheeffectivenessoftheircarethroughaplannedandstructuredsystem.Thispartnershipinplanningshouldseektobalancerecognisedpreferencesandrequirementsforcare,witharespectforsafety,effectivenessandachievability.
6.19 Accessibleinformationisessentialtosupportmeaningfulpatientandcarerinvolvementindevelopinganindividualisedplanofcarewhichconsidersavailableoptionsandreflectsandrecordspreferencesinlightofthese.Patients,theirfamiliesandcarersshouldthereforehaveaccesstotimely,accurateandconsistentinformationprovidedinaway
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thathelpsthemunderstandthenatureoftheircare,reducesanxietyandallowsparticipationinplanninghowtheircarewillbedelivered.Informationsourcesshouldalsoprovidethevitalsignpostingtoservicesandoptions,includingfinancialandotherassistance,thatcanhelpmeettheneedsoftheindividual,theirfamilyandcarers.Furtherconsiderationshouldbegiventohowawholesystemsapproachcanbemaximisedtosupportbettercommunicationandinformationtransfer.
Exemplars 13 + 14: Showinginformationandsignpostingsystems
Information pathway for people with advanced diseaseTheNICaNPatientInformationProgrammeseekstobringregionalteamsofhealthandsocialcareprofessionalstogetherwithpatientandpublicinvolvementrepresentativestoidentifytheinformationresourcescurrentlyusedandthegapswhichexist.Aninformationpathwayforadvancedcancerhasbeendevelopedandcontainsmanyreferencestopalliativeandendoflifecare.
Source:NICaN
www.pallcareni.net ThisisawebsitededicatedtopalliativeandendoflifecareinNorthernIreland.Itwillbearesourceforallpatientswithpalliativecareneedsandthoseprovidingtheircare.Developingthecontentforthesitehasrequiredengagementwithawidevarietyofprovidersacrosstheprovinceandclinicalspecialityareas.
Source:NICaN
Preferred Priorities for Care
6.20ThePreferredPrioritiesforCare41(PPC,formerlyPreferredPlaceofCare)isapatientheldrecordthatcansupporttheplanningofcaredeliverybyidentifying,recordingandrespectinganindividual’spreferencesandchoiceregardinghowandwheretheircareisprovided.Documentingandsharinginformationaboutpreferencesforcareacrosscaresettings
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canhelpensurethatplansofcareareimplementedeffectivelyandcanpreventunnecessarycrises,forexample,insituationswhereapatient’sconditiondeterioratesoutsidenormalworkinghours.Effectiveandrecordedplanningforout-of-hourscare,includinganticipatoryprescribingoverweekendsandbankholidays,ensuresthattheindividual,theirfamilyandcarerscanhaveconfidenceinthecontinuityoftheservicesthatwraparoundthem.
6.21 Improvingthepre-planningofcareisoneofthemostimportantwaysinwhichperson-centredcarecanbeachievedandcommunicationanddecision-makingbetweencliniciansandpatientsmademoreeffective.Thedevelopmentofanindividualisedcareplanmayalsoincludeelementsofadvancecareplanningaroundissuessuchasresuscitationandorgandonation.ConsistentandclearlycommunicatedDoNotAttemptResuscitation(DNAR)policiesacrossallcaresettingscansupportdecision-makingandimprovecareplanningforclinicians,patients,familiesandcarers.
6.22ADNARorderappliesonlytoCardio-PulmonaryRescusitation(CPR)anddoesnotimplythatothertreatmentswillbestoppedorwithheld.Staffmustmakecleartopatients,peopleclosetothepatientandmembersofthehealthcareteamthatallothertreatmentandcarewhichprovideoverallbenefitforthepatientwillbecontinued.
Direct Payments Scheme
6.23TheDirectPaymentsSchemecansupportamoreflexibleapproachtoplanningandpurchasingsocialcareservices.Itfacilitatestheproactiveinvolvementoftheindividual,theirfamilyandcarers,andenablesthemtomaketheirowndecisionsabouthowtheircareandsupportisshapedanddelivered.Theschemeallowscashpaymentstobemadeinlieuofsocialservicesprovisiontoindividualswhohavebeenassessedasneedingservices.Commissionersandprovidersmaywishtoconsiderhowdirectpaymentscanbebetterused.
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4 Co-ordinating and Delivering Palliative and End of Life Care Across Care Settings
6.24 Itisnotuncommonforapatienttomovebetweenservicesandcaresettingsastheirconditionprogresses,orindeedtobeutilisingservicessimultaneouslyfromdifferentcareproviders.Theseamlessdeliveryofappropriatepalliativeandendoflifecareatallstages,andinallsettings,duringthepatient’sillnessrequiresanintegratedandco-ordinatedapproachtocare.
Exemplar 15: Anurseliaisonproject
AspartofpalliativecaredevelopmentwithintheSouthEasternHSCTrust,theTrustsetupapalliativecarenurseliaisonprojecttoassistwithcomplexpalliativecaredischargesfromhospital.TheprojectcurrentlyfocusesonpatientswithintheUlsterHospitalandtheNorthDownandArdsCommunityHospital.
ThepurposeofthepalliativecareliaisonnurseasoutlinedintheCancerServiceStrategicPlan2008–2013(SouthEasternHealthandSocialCareTrust,2008)isto:
• Ensurethatthecareofpatientsisco-ordinatedandstreamlinedtoprovidetimelydischarge,facilitatepreferredplaceofcareandpatientchoiceforendoflifecareandpreventunnecessaryre-admissiontohospital;
• Reducetheneedforunnecessaryoutpatientfollowupappointmentsinhospital;
• Facilitateliaisonandlinkageofallteamswithinprimarycarethusensuringappropriatediscussionandimplementingefficientandeffectivedischargeplanning;
• Provideeducationtoenhancegeneralistpalliativecare.
Theliaisonnursemeetsthepatientandtheirfamilyorcarerintheacutesetting,ensuresthatthedischargeplanisinplacepriortodischarge,establisheslinkswiththeprimarycareteamandundertakesafollowupvisit,ifdeemednecessary.Primarycareteamscanaccesstheliaisonnursefor
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clarificationregardingfollowupappointmentsandcurrenttreatmentoptionsinordertosupportprimarycareadvancedcareplanning.
Source:SouthEasternHSCTrust
6.25Onewayoffacilitatingseamlessdeliveryofcareisthroughtheuseofapatientpassport.Apatientpassportistheperson’sowndocument,designedtoprovidevitalinformationabouttheindividualwhichwouldinstantlybeofhelptohealthandsocialcareprofessionalsandotheragencies.Itspurposeisnotonlytoreducetherepetitivequestioningoverpersonaldetails,butalsotohighlightinformationwithregardtomedicationsordetailsaboutanyopenaccesstosupportandadvicefromserviceswhichthepersonisknownto,includinghospital,hospiceorownGP.
6.26Palliativeandendoflifecareservicesshouldbeeffectiveinmeetingtheneedsofpatients,familiesandcarers.Thisisdependentondevelopingintegratedservicesthatworktogetherandaredeliveredinaseamlessandconsistentway.Toachievethisrequiresarobustknowledgeoftheservicesthemselves,goodcommunicationandthethoughtfulplanningofhowservicescanbestbedeliveredbothwithinorganisationsthemselvesandinpartnershipwithotherproviders.Theroleofakeyworkeriscrucialinensuringtheco-ordinationofcareservicesacrossinterfacesandbetweennormalworkinghoursandout-of-hours.
6.27 Co-ordinatingthecareofindividualsattheendoflife,andthatoftheirfamiliesandcarers,meansensuringthatintegratedservicesareprovidedinatimelyandorganisedway.Thisisnecessaryatseverallevels(DOH,2008):
• Co-ordinationwithinanindividualteam,e.g.withintheprimarycareteam;
• Co-ordinationbetweenteamsworkingwithinasingleenvironment,e.g.heartfailureteamandspecialistpalliativecareteamwithinahospitalsetting;
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• Co-ordinationacrossorganisationalboundariese.g.whenanindividualmovesbetweenhospitalandcarehome.
Exemplar 16: IntegratedServices:Dedicatedtransport–PalliativeCare Ambulance(Leeds)
Thesevehiclesensurethatpalliativecarepatientscanbedischargedquickly,safelyandincomfort–withoutfacinglongdelaysandmissingtheopportunitytoreturnhomeinaccordancewiththeirwishes.
Source:MarieCurie,DeliveringChoice,Leeds
Co-ordinating 24/7 Palliative and End of Life Care
6.28Toenablepeopletobecaredforandultimatelytodieintheirplaceofchoice,essentialmedicalandnursingservicesshouldbefurtherdevelopedandaccessibleinthecommunityona24/7basisforallwhoneedthem(NICE2004).Essentialservicescaninclude:
• Nursingservices(e.g.visitingandrapidresponseservicestothepatient’shome,includingcarehome);
• Medicalservices;• Socialcareservices;• Accesstomedicationandpharmacyservices;• Accesstoequipment;• AccesstoAmbulanceservices;• AccesstoAHPs;• Accesstospiritualsupport• Accesstospecialistpalliativecareteams.
6.29Theseservicesshouldbeavailableinawaythatallowsthepatienttobeassessedandtheirneedsaddressedout-of-hoursasnecessary.Co-ordinationofcarealsorequirestimelyinformationflowbetweeninterfaces.Thisisparticularlysignificantwhenthepatient’sconditionandneedsmaybeactivelychanging,requiringout-of-hourssupportordischargefromonecaresettingtoanother.
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Exemplar 17: MarieCurieCancerCareDeliveringChoiceProgramme, Lincolnshire-RapidResponseTeam(RRT)
Theunavailabilityof24hourplannedcoverforpatientsandcarerswasidentifiedasamajorbarriertotheprovisionofhomecare.TheRRTprovidestwilightandout-of-hoursnursingcareforpatientswithpalliativecareneeds,theirfamiliesandcarersathome.Teammembersmakeplannedandemergencyvisitsaswellasprovidingsupportandadviceoverthephone.TheTeamalsoliaiseswithothercareproviders,Out-of-Hours(OOH)TeamsandthePalliativeCareCo-ordinationCentretoensureprovisionofanintegratedservice,providespecialistnightsupportwherenightcareisunavailable,andmaintainandtransferpatientinformationasappropriate.TheTeamprovidesaservice7daysperweekduringthetwilightandout-of-hoursperiod.
“HavingtheRapidResponseTeamcomewaslikesomeonethrowingalifebelt”
Source:MarieCurie,DeliveringChoice,Lincolnshire
Exemplars 18, 19 + 20: Demonstratingserviceimprovements
Enhanced Palliative Care Service in the Northern HSC Trust TheenhancedpalliativecareservicewasimplementedinDecember2008andisfullyoperationalacrosstheTrust.Theserviceiscomposedof18wholetimeequivalentseniorHealthCareAssistants(HCA),providingcoverfrom8am-11pm,7daysperweek.TheserviceisdeliveredinpartnershipwithMarieCurie,whichemploysandmanagestheHCAs.TheHCAsarealignedwithcoredistrictnursingserviceswhichco-ordinateandsuperviseworkloads.TheHCAsprovideallaspectsofcaretopatientsandsupportfamilieswhoarecaringforpalliativepatientsathome.Thisinitiativeenablesgreaterpatientchoiceforthosewhochoosetodieathome.Theservicehasretainedtheflexibilitytorespondquicklytopatients,familiesandcarersandtobeutilisedinpartnershipwithcoredistrictnursinganddomiciliarycareproviderstoensurethattheneedsofthepatient,theirfamilyandcarersaremet.
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Theservicehasprovedinvaluablewithinashortperiodoftimewithfeedbackfromusersextremelypositive.
Source:NorthernHSCTrust
Palliative Care Beds in Statutory Residential Facilities within South Eastern HSC TrustTheSouthEasternHSCTrusthasintroducedprimarycareledpalliativecarebedslocatedintworesidentialfacilitiesforolderpeople.ThisnewinitiativehasenabledtheTrusttosupportpatientswithpalliativecareneedsclosetotheirowncommunity.Advancecareplanningdiscussions,whichhaveincludedtheresidents’viewsregardingtheirpreferredplaceofcare,havepreventedunnecessaryadmissiontohospitalorhospice.Patients’careisprovidedbytheirownGPanddistrictnursingservicesandsupportedbythecommunitypalliativespecialists.
Trainingofstaffinrelationtopalliativeandendoflifecarehasenhancedtheservicedeliveredtothepalliativeresident.
Source:SouthEasternHSCTrust
Out-of-Hours Toolkit Macmillan http://learnzone.macmillan.org.ukThisisaresourceforprofessionalsbringingtogethernumerousexamplesofgoodout-of-hourspracticeforpalliativecarepatients.TheeducationchapterofthetoolkitisausefulresourceforprofessionalsinterestedinelevatingthestandardsofGeneralistPalliativeCareintheout-of-hourssetting.
Source:Macmillan
Gold Standards Framework (GSF)
6.30Bestpracticeguidelines,suchastheGoldStandardsFramework42,enablegeneralistcareproviderstodeliverhighqualityandintegratedpalliativeandendoflifecaretopatientsthroughimprovinganticipatory
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care,dischargeplanning,co-ordinationandprovisionofpalliativeandendoflifecare.Originallydesignedtosupportthedeliveryofpalliativeandendoflifecarebyprimarycareteams,theGSFhassincebeendevelopedforusewithincarehomesandhospices.PilotingoftheframeworkwithinhospitalandprisonsettingshasdemonstratedthattheGSFclearlysupportstheintegrated,wholesystemsapproachwhichmaximisescross-boundaryworkingbetweenhome,hospitals,hospicesandcarehomesandimprovestheco-ordinationofcareservices.
6.31 ResultingresearchandauditsoftheuseoftheGSFhavedemonstrated:
• agreaterawarenessofpatientneedandamoreproactiveapproachtocare;
• betterorganisation,consistencyandcommunication;• reducedhospitalisationi.e.fewercrisishospitaladmissions;• increasedoccasionsofdeathwithinthepatient’spreferredplaceof
care.
6.32TheuseoftheGSFcanassisttheearlyidentificationofpatientswithpalliativeandendoflifecareneeds,effectivecommunicationandteamwork,earlysymptommanagementandproactive/anticipatoryhealthcareplanning.
6.33MechanismsshouldbeputinplacetoenablebestpracticetoolssuchastheGSFtobeimplemented;forexample,nurseswhoplayacentralrolewithintheco-ordinationanddeliveryofgeneralistandspecialistpalliativecareshouldtakealeadininitiatingandco-ordinatingqualitypalliativeandendoflifecareacrosscaresettingsanddisciplines.
Exemplar 21:Roleofthecommunityheartfailurenurseinpalliativeandend oflifecare
TheaimoftheCommunityHeartFailureSpecialistNursingServiceistomaintainpatientsathomebyoptimisingtheirmedications,controllingsymptomsandtherebyimprovingtheirqualityoflife.
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Asthepatient’sconditiondeterioratesthemainpriorityistokeepthepatientascomfortableaspossiblebycontrollingtheirsymptomsandprovidingsupporttothepatient,theirfamilyandcarers.TheHeartFailureSpecialistNursesmayinvolveotherssuchasthemulti-disciplinarypalliativecareteam,districtnursingandGeneralPractitionerasnecessary,foradviceandsupport.
Source:BelfastHSCTrust
Case Study 3: Theroleoftherespiratorynurseinpalliativeandendoflifecare
Maryisa65yearoldladywithsevereCOPDwholivesaloneinNorthBelfast.Shehasbeenknowntotherespiratoryspecialistteamforthepast5years,originallyreferredforpulmonaryrehabilitation.Shehashadafewadmissionstohospitaloverthistimeandhasbeencasemanagedforthelast2years.Ayearagoshewasassessedandneededtobestartedonlong-termoxygentherapy.
FollowinganadmissionearlierintheyearwhichnecessitatedMaryreceivingnon-invasiveventilationduetotheseverityofherexacerbation,shehasbecomeincreasinglymorebreathlesswhichhasresultedinherbeinglessmobileandmoreanxious.Herdaughterhasalsoexpressedconcernsabouthermother’sdeterioration.
TherespiratorynursespecialistrecognisedthesignificanceofthisdeteriorationandafterconsideringtheGoldStandardPrognosticIndicators,feltthatsheneededtocompleteaholisticassessmentofMary’spalliativecareneeds.ThiswasdiscussedwithbothMaryandherdaughterandMarywasgiventheopportunitytospeakaboutherconcernswhichwereclearlycontributingtoherterribleanxiety.
TherespiratorynursepresentedMary’scaseatthemulti-professionalrespiratoryteammeetingandothermembers,whoalsoknewMary,
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contributedtotheassessmentandtheplanforherongoingmanagement.Thisincludedareviewandoptimisationofhermedicationforbettersymptomcontrol.ReferralstosocialservicesandOccupationalTherapy(OT)weremadebecausesheexpresslywishedtostayathome.Acarers’assessmentwasofferedtoMary’sdaughterandwhilstsheindicatedthatshedidn’twantanyadditionalhelpatthisstage,shewouldthinkaboutthisinthefuture.
TherespiratorynursemadecontactwiththeGPandtheHospitalRespiratoryTeamtoensuretheywereawareofthesituation.ShealsoaskediftheGPwoulddoajointvisitwithher,toensurecontinuityinthecommunication,informationandtreatmentplan.TheDistrictNursingServicewasinformedofMary’scondition.MarywillcontinuetobevisitedweeklybytheRespiratoryTeamandhastheircontactdetailsandthoseofthe24hourteamforout-of-hourssupportifrequired.
Source:BelfastHSCTrust
Quality and Outcomes Framework
6.34Co-ordinatingcarewithintheprimarysectorhasbeenfurthersupportedbytheQualityandOutcomesFramework(QOF).TheQOF,developedundertheauspicesofthenewGeneralMedicalServices(GMS)contract,incorporatessomecomponentsoftheGSFandinvolvestheestablishmentofapalliativecareregisterwithinGPPracticesandregularmulti-disciplinaryteammeetingstodiscusstheplanninganddeliveryofcareforpatientswhoarerecordedontheregister.
Medicines Management in Palliative Care
6.35Goodpalliativecaremedicinesmanagementarrangementswillprovidesafe,convenientandeffectiveaccesstotherightmedicationattherighttime.Aproactiveapproachshouldbetakenwherebypatientsymptomsandneedsareregularlyreviewedandchangesintreatmentplansanticipatedinadvance,therebyprovidingthenecessaryassurancethattreatmentandadvicearereadilyavailablewhenneeded.Suchanapproachcanreducethepotentialforuncertaintyandunduedelay.
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6.36Medicationusedinpalliativeandendoflifecareforallpatientsinthecommunityshouldbeaccessibleandavailablebothinandout-of-hoursandtheroleofthecommunitypharmacistiskeyinthisrespect.Standardsofgoodmedicinesgovernanceshouldbeinplace,includingrecordsofclinicaldecisionsandthedelivery/collectionofpalliativecaredrugsasguidedbytheFourthReportoftheShipmanInquiry43.
Case Study 4: CommunityPharmacist
Paula,a53yearoldladywasdiagnosedwithpancreaticcancer,shewasunderstandablydevastatedbythediagnosisandhadverylittlefamilyorcommunitysupport.Shehadattendedonecommunitypharmacyallofherlifeandhadbuiltupagoodrelationshipwiththepharmacist.Thepharmacistknewherverywell,inpartofPaula’shistoryofdrugandalcoholaddictionwhichmeanttheydispensedhermedicinesonaweeklybasis.OndischargefromhospitalthefirstplacePaulavisitedwashercommunitypharmacy.Shewascompletelyconfusedandbewilderedwiththecomplexnewmedicineregimeshehadbeengiven.ThepharmacistspenttwohourstalkingwithPaula,explainingallhernewmedicinesandcontactedthehospitalinanattempttohavetheregimesimplified.EventuallyafinalregimewasagreedwithPaula’shospitalteam,thissimplifiedregimeinvolvedPaulataking69dosesofmedicationeverysingleday.ThepharmacistofferedtopreparethemedicinesforPaulainapillboxandshedeliveredthepillboxweeklytoPaula’shome.Duringthepharmacist’svisitsasPaula’sconditiondeteriorated,shecheckedthatPaulaseemedphysicallyandmentallyfittomanagetheadministrationofhermedicines.AsherconditionprogressedthepharmacistcontactedthenursingteamtoexpressherconcernsandtheteammanagedtoorganiseacarertohelpPaulawiththeadministrationofhermedicines,thepharmacistcounselledthecareronPaula’smedicinestoensuresheunderstoodtheregime.ThepharmacistcontinuedtovisitPaulaweeklyprovidingadviceandsupportasneededuntilsadlyshepassedawaytwomonthslater.
Source:PharmaceuticalContractorsCommittee(NI)Ltd
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5 Care In The Last Days of Life
6.37 Whenapatienthasbeenidentifiedashavingenteredthelastdaysoflife,itisvitalthattheycontinuetoreceiveahighstandardofcarewhichisstructuredandfocusedonensuringgoodsymptomandcomfortmanagementandthatappropriatesupportmechanismsareinplacefortheirfamilyandcarersatthisdifficulttime.
6.38Unlessdeathoccurssuddenlyorunexpectedly,thelastdaysoflifehaverecognisablefeaturesandrequireprofessionalstore-appraisetheuseoftreatmentsinordertoachievesymptomcontrol.
6.39Bestpracticeguidelinesforcareinthelastdaysoflife,suchasthe
LiverpoolCarePathwayfortheDyingPatient,canhelpensurethatindividualswhohaveenteredtheirfinaldaysandhoursarecaredforwithsensitivityinaplannedandstructuredwayandwithgoodcommunicationbetweencareprovidersthemselvesandwiththepatient,familyandcarers.Itisappropriateatthisstagethatanydecisionsthatweremadeaboutresuscitationareimplementedinlinewiththepatient’swishes.
Liverpool Care Pathway
6.40TheLiverpoolCarePathway(LCP)44isanintegratedclinicalpathwaythathasbeenrecognisedasamodelofbestpracticeforcareinthelastweeksordaysoflifeandincorporatedintotheNationalEndofLifeCareProgramme(2004-9)45.TheNICEguidanceonsupportiveandpalliativecareforpatientswithcancer46alsorecommendedtheLCPasamechanismforidentifyingandaddressingtheneedsofdyingpatients.Originallydesignedforhospitaluse,theLCPhasbeenadaptedforuseinhospices,carehomesandpatients’ownhomesandisappropriateforpatientswithmalignantandnon-malignantdiagnoses.
6.41 Aswithanyotherbestpracticetool,theLCPisintendedtosupportratherthanreplace,clinicalexperienceandexpertiseandshouldonlybeinitiatedandusedbyclinicianswhoaretrainedandcompetenttodoso.Continuousassessmentofthepatient’sconditionandthe
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appropriatenessoftheirremainingonthepathwayareimperativeandshouldbesubjecttoongoingreview.
6 Bereavement Care
6.42 Itisestimatedthatforeverydeath,atleastfourrelativesandfriendsexperiencetheloss,withover56,000peopleinNorthernIrelandbeingaffectedbybereavementinanyoneyear.
6.43Familiesandcarersprovideessentialsupportforpatients,buttheirownneedsforemotionalandpracticalsupportmaygounrecognised,oftenbecausetheyputtheneedsofthepatientfirst.Whiletheeffectsofbereavementcanhaveasignificantimpactonthephysicalandmentalhealthofmanyindividuals,totheextentthatspecialistsupportservicesmayberequired,themajorityofpeoplecopewiththeexperiencewiththecareandsupportoffamilyandfriendssothatsomedegreeofhealingandrecoveryoccurs.Itisrecognisedthatacompassionateandsensitiveapproachthroughoutendoflifecarecanimpactpositivelyonthegrievingprocesstofacilitatesuchhealing.
6.44TheNIHealthandSocialCareServicesStrategyforBereavementCare47aimstopromoteanintegrated,consistentapproachtosupportingindividuals,familiesandcarerswhohavebeenbereaved,andthosethatsupportthem,inawaythatisappropriatetotheirindividualneedsandpreferences.Anumberofstandardsforbereavementcarehavebeendevelopedaroundkeythemesanditisintendedthatthesestandardswillinformregionalguidelinesandlocalpoliciesandprocedureswhereappropriate.Sixprincipalstandardshavebeenidentified:
1.Raising awareness: ThatHealthandSocialCarestaffwillbesuitablytrainedtohaveanawarenessandunderstandingofdeath,dyingandbereavement.Staffshouldalsoacknowledgethefactthatgriefisanormalprocessfollowingloss,andthatneedsvaryaccordingtoanindividual’sbackground,community,beliefsandabilities.
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Living MattersDying Matters
2.Promoting safe and effective care: ThatallHealthandSocialCarestaffwhohavecontactwithpeoplewhoaredyingand/orthoseaffectedbybereavementwilldeliverhighquality,safe,sensitiveandeffectivecarebefore,atthetimeofandafterdeath.Accordingtoindividuals’backgrounds,communities,beliefsandabilities.
3.Communication, information and resources: Thatpeoplewhoaredyingandthosewhoareaffectedbybereavementwillhaveaccesstouptodate,timely,accurateandconsistentinformationinaformatandlanguagewhichisappropriateandwillbehelpfultotheirparticularcircumstancesconsistentwiththeirneeds,abilitiesandpreferences.Staffwillrememberthattheavailabilityofwrittenorotherinformationdoesnotnegatetheirpersonalsupportrole.
4.Creating a supportive experience: Thatthosewhoaredyingandtheirfamilieswillbeaffordedtime,privacy,dignityandrespectand,whereverpossible,giventheopportunitytodieintheirpreferredenvironmentwithaccesstopractical,emotionalandspiritualsupportbasedontheirindividualneeds,abilitiesandpreferences.
5.Knowledge and skills: ThatHealthandSocialCareorganisationsrecognisethevalueofaskilledworkforcebyensuringthatthosecomingintocontactwith,orcaringforpeoplewhoaredyingandthoseaffectedbybereavementarecompetenttodelivercarethroughcontinuingprofessionaldevelopment;andbyhavingsystemsinplacetosupportthem.
6.Working together: Thatgoodcommunicationandco-ordinationwilltakeplacewithinandbetweenindividuals,organisationsandsectors,toensurethatresourcesaretargetedefficientlyandeffectivelyandthatthereisintegrationofcaretomeettheneedsofpeoplewhoaredyingandtheirfamilies,friendsandcarers.
ThisStrategycanbeaccessedatwww.dhsspsni.gov.uk/nihsc-strategy-for-bereavement-care-june-2009.pdf.
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SECTION 6A Model for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendations
12. Arrangementsshouldbeputinplacewhichallowforthemostappropriateperson(bethatclinicalstaff,carers,spiritualcareprovidersorfamilymembers)tocommunicatewith,andprovidesupportfor,anindividualreceivingsignificantinformation.
13. Appropriatetoolsandtriggersshouldbeimplementedtoidentifypeoplewithpalliativeandendoflifecareneedsandtheirpreferencesforcare.
14. Alocalitybasedregistershouldbeinplacetoensure(withthepermissionoftheindividual)thatappropriateinformationaboutpatient,familyandcarerneedsandpreferencesisavailableandaccessiblebothwithinorganisationsandacrosscaresettingstoensureco-ordinationandcontinuityofqualitycare.
15. Conditionspecificcarepathwaysshouldhaveappropriatetriggerpointsforholisticassessmentofpatients’needs.
16. Timelyholisticassessmentsbyamulti-disciplinarycareteamshouldbeundertakenwithpeoplewhohavepalliativeandendoflifecareneedstoensurethatchangingneedsandcomplexityareidentified,recorded,addressedandreviewed
17. Timelyholisticassessmentsbyamulti-disciplinarycareteamshouldbeundertakenwiththefamilyandcarersofpeoplewhohavepalliativeandendoflifecareneedstoensurethattheirneedsareidentified,recorded,addressedandreviewed.
18. Respitecareshouldbeavailabletopeoplewithpalliativeandendoflifecareneedsinsettingsappropriatetotheirneed.
19. Patients,theirfamiliesandcarersshouldhaveaccesstoappropriateandrelevantinformation.
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20. Palliativeandendoflifecareservicesshouldbeplannedanddevelopedwithmeaningfulpatient,familyandcarerinvolvement,facilitatedandsupportedasappropriateandprovidedinaflexiblemannertomeetindividualandchangingneeds.
21. Servicesshouldbeprioritisedfortheprovisionofequipment,transportandadaptations,forallpatientswhohaverapidlychangingneeds.
22. Policiesshouldbeinplaceinrespectofadvancecareplanningforpatientswithpalliativeandendoflifecareneeds.
23. Toolstoenablethedeliveryofgoodpalliativeandendoflifecare,forexample,theGoldStandardsFramework,PreferredPrioritiesforCare,MacmillanOut-of-hoursToolkitortheLiverpoolCarePathway,shouldbeembeddedintopracticeacrossallcaresettingswithongoingfacilitation.
24. Allout-of-hoursteamsshouldbecompetenttoprovideresponsivegeneralistpalliativeandendoflifecareandadvicetopatients,carers,familiesandstaffacrossallcommunitybasedcaresettings.
25. Accesstospecialistpalliativecareadviceandsupportshouldbeavailableacrossallcaresettings24/7.
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
7.1 ThisActionPlandetailstherecommendationswhichhavebeenidentifiedthroughoutthedevelopmentoftheStrategy.
Itprovidescleardirectiontosupportorganisationstoplananddeliverpalliativeandendoflifecare,whichwillachievethequalityoutlinedinthevision.Eachhighlevelrecommendationissupportedbyidentifyingwhichorganisationsareresponsibleforplanninganddelivery,theexpectedtimescaleforimplementation,theidentifiedoutcomesandhowtheseshouldbemeasured.
Thetimescaleshavebeendefinedas:Short(0-12months),Medium(1-3years)andLong(3-5years)
LCGs–LocalCommissioningGroups HEIs–HigherEducationInstitutions
Section 3 Developing Quality Palliative and End of Life Care
Recommendation
1.Opendiscussionaboutpalliativeandendoflifecareshouldbepromotedandencouragedthroughmedia,educationandawarenessprogrammesaimedatthepublicandthehealthandsocialcaresector
Responsibility
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyPatient&ClientCouncilCommunitySectorVoluntarySectorIndependentSectorHEIsEducationConsortia
Quality Outcome
•Allrelevantorganisationsareawareoftheviewsofthepopulationwithregardtodeliveryofpalliativeandendoflifecare•Strategiesareinplaceforpromotingpublicawarenessofpalliativeandendoflifecare
Measure
•Reports,surveys,focusgroups•Localstrategicplansincludeactionstobetakentopromoteawareness
Timescale
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
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Recommendation
2.Thecoreprinciplesofpalliativeandendoflifecareshouldbeagenericcomponentinallpre-registrationtrainingprogrammesinhealthandsocialcareandinstaffinductionprogrammesacrossallcaresettings
3.Mechanismstoidentifytheeducation,developmentandsupportneedsofstaff,patients,families,carersandvolunteersshouldbeinplacetoallowperson-centredprogrammestobedevelopedwhichpromoteoptimalhealthandwell-beingthroughinformation,counsellingandsupportskillsforpeoplewithpalliativeandendoflifecareneeds
Responsibility
HSCTrustsCommunitySectorVoluntarySectorIndependentSectorHEIsEducationConsortia
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyPatient&ClientCouncilCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Theneedsforeducationandtrainingforallstaffinallcaresettingshavebeenassessed,prioritisedandprogrammesinitiatedinpalliativeandendoflifecareandcommunicationskills
Person-centredprogrammesareavailablewhichpromoteoptimalhealthandwell-being,provideinformation,counsellingandsupportskillsinpalliativeandendoflifecare
Measure
•Localstrategicplansencompasseducationandtrainingrequirementsandprioritiesforstaffwhoarenotspecialistsinpalliativeandendoflifecare•Localstrategicplansencompasscommunicationskillstrainingrelatedtopalliativeandendoflifecare
•Localstrategicplansidentifytheeducationanddevelopmentneedsofstaff,patients,families,carersandvolunteers•WrittenevidenceisavailabletodemonstratelocalprogrammeshavebeendevelopedinpartnershipwithkeyeducationstakeholdersandagreedwiththePublicHealthAgency
Timescale
Medium
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
4.Arangeofinter-professionaleducationanddevelopmentprogrammesshouldbeavailabletoenhancetheknowledge,skillsandcompetenceofallstaffwhocomeintocontactwithpatientswithpalliativeandendoflifecareneeds
5.Arrangementsshouldbeinplacewhichprovidefamiliesandcarerswithappropriate,relevantandaccessibleinformationandtrainingtoenablethemtocarryouttheircaringresponsibilities
6.Acollaborativeandcollegiateapproachtoresearchanddevelopmentshouldbeestablishedandpromotedtoinformplanninganddelivery,driveupqualityandimproveoutcomesinpalliativeandendoflifecare
Responsibility
VoluntarySectorHEIsEducationConsortia
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyPatient&ClientCouncilCommunitySectorVoluntarySectorIndependentSector
HSCBoardPublicHealthAgencyPatient&ClientCouncilVoluntarySectorHEIsResearchConsortiaHSCR&DOffice
Quality Outcome
Flexibleandaccessibleeducationprogrammes,basedontheneedsofhealthandsocialcareworkers,areavailable
Individualfamilyandcarerinformationandtrainingneedsareidentifiedandaddressed
Researchfindingsaretranslatedtotimelyandstandardisedimprovementsforthepopulation
Measure
•Writtenevidenceoftheavailability,qualityanduptakeofinter-professionalprogrammes
•Informationandtrainingneedsassessedandagreed,andactionstakentoaddressthesearedocumented
•Baselineassessmentofresearchactivityhasbeencarriedout•Writtenevidencethatthereiscollaborativeandcollegiateplanningforresearchprogrammes
Timescale
Medium
Medium
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
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Recommendation
7.AleadcommissionershouldbeidentifiedforpalliativeandendoflifecareatregionallevelandwithinallLocalCommissioningGroups
8.Systemsshouldbeinplacewhichcapturequalitativeandquantitativepopulationneedsrelatingtopalliativeandendoflifecare
Responsibility
HSCBoardLCGsPublicHealthAgency
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgency
Quality Outcome
Accountabilityandleadershipforpalliativeandendoflifecareidentifiedatregionalandlocallevels
Qualitativeandquantitativepopulationneedsdataareavailablerelatingtopalliativeandendoflifecaretoinformpolicy,commissioningandplanning
Measure
•Writtenevidencedemonstratesthatregionalandlocalplansareledbynamedcommissioningleads
•Evidencethatrobustdatacapturesystemshavebeendevelopedandimplemented
Timescale
Short
Medium
Section 4 Commissioning Quality Palliative and End of Life Care
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SECTION 7Action Plan for Quality Palliative and End of Life Care
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Recommendation
9.Eachpatientidentifiedashavingendoflifecareneedsshouldhaveakeyworker
10.Everychildandfamilyshouldhaveanagreedtransferplantoadultservicesinbothacutehospitalandcommunityserviceswithnolossofneededserviceexperiencedasaresultofthetransfer
11.ThepotentialforaManagedClinicalNetworkshouldbeexploredtoensureleadership,integrationandgovernanceofpalliativeandendoflifecareacrossallconditionsandcaresettings
Responsibility
HSCBoardLCGsHSCTrustsPublicHealthAgencyVoluntarySector
HSCBoardLCGsHSCTrustsPublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector
DHSSPSHSCBoardLCGsPrimaryCarePublicHealthAgencyCommunitySectorVoluntarySectorIndependentSectorEducationConsortia
Quality Outcome
Keyworkersareidentifiedandavailabletoallpatientswithendoflifecareneeds
Everychildwithpalliativeandendoflifecareneedsandtheirfamily,experienceaseamlesstransitiontoadultservices
AdecisionhasbeenmadewithregardtothefeasibilityandroleofaManagedClinicalNetworktoimprovedeliveryofpalliativeandendoflifecare
Measure
•Regionaldevelopmentofrolespecificationofkeyworker•Localstrategicplanswillindicateactionstoensuretheroleofkeyworkerisdefined•Writtenevidenceinwork-forceplanswilldemonstratethedevelopmentofkeyworkerrole
•Everychildwithpalliativeandendoflifecareneeds,andtheirfamily,hasanagreedtransferplanincorporatingkeystandardsfortransitionalcare
•Evidenceofdecision-makingprocessisdocumented
Timescale
Short
Medium
Intermed-iate
Section 5 Delivering Quality Palliative and End of Life Care
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
12.Arrangementsshouldbeputinplacewhichallowforthemostappropriateperson(bethatclinicalstaff,carers,spiritualcareprovidersorfamilymembers)tocommunicatewith,andprovidesupportfor,anindividualreceivingsignificantinformation
13.Appropriatetoolsandtriggersshouldbeimplementedtoidentifypeoplewithpalliativeandendoflifecareneedsandtheirpreferencesforcare
Responsibility
HSCTrustsPrimaryCareCommunitySectorVoluntarySectorIndependentSector
LCGsPrimaryCareCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Individualshavesignificantnewsdiscussedwiththembythemostappropriateperson
Peoplewithpalliativeandendoflifecareneedsacrossallcaresettingsareidentifiedandtheirpreferencesforcareknown
Measure
•Protocolsforcommunicationareinplaceandaudited
•Writtenevidencethatappropriatetoolsandtriggersarebeingusedtoidentifypeoplewithpalliativeandendoflifecareneedsandtheirpreferenceforcarearerecorded
Timescale
Short
Medium
Section 6 A Model for Quality Palliative and End of Life Care
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
14.Alocalitybasedregistershouldbeinplacetoensure(withthepermissionoftheindividual)thatappropriateinformationaboutpatient,familyandcarerneedsandpreferencesisavailableandaccessiblebothwithinorganisationsandacrosscaresettingstoensureco-ordinationandcontinuityofqualitycare
15.Conditionspecificcarepathwaysshouldhaveappropriatetriggerpointsforholisticassessmentofpatients’needs
16.Timelyholisticassessmentsbyamulti-disciplinarycareteamshouldbeundertakenwithpeoplewhohavepalliativeandendoflifecareneedstoensurethatchangingneedsandcomplexityareidentified,recorded,addressedandreviewed
Responsibility
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgency
LCGsHSCTrustsPrimaryCareCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Alocalitybasedregisterisinplaceandisaccessiblewithinorganisationsandacrosscaresettings
Allpatientswithpalliativeandendoflifecareneeds,regardlessofcondition,willhaveholisticassessmentsundertakenatappropriatepoints
Patientneedsareidentifiedandaddressedbyanappropriatemember/sofamulti-disciplinaryteam
Measure
•Alocalitybasedregisterisinplaceandmaintainedforpatientswithpalliativeandendoflifecareneeds•Writtenevidencedemonstratesappropriatecommunicationandinformationsharinghastakenplace
•Writtenevidencethatconditionspecificcarepathwaysincludeanticipatorytriggerpointsforholisticassessment
•Writtenevidencedemonstratestimelyassessmentandreviewtoidentify,record,addressandreviewchangingneedsandcomplexity
Timescale
Medium
Medium
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
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Recommendation
17.Timelyholisticassessmentsbyamulti-disclipinarycareteamshouldbeundertakenwiththefamilyandcarersofpeoplewhohavepalliativeandendoflifecareneedstoensurethattheirneedsareidentified,recorded,addressedandreviewed
18.Respitecareshouldbeavailabletopeoplewithpalliativeandendoflifecareneedsinsettingsappropriatetotheirneed
19.Patients,theirfamiliesandcarersshouldhavetimelyaccesstoappropriateandrelevantinformation
Responsibility
LCGsHSCTrustsPrimaryCare
HSCBoardLCGsPublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Familyandcarerneedsareidentifiedandaddressedbyanappropriatemember/sofamulti-disciplinaryteam
Accesstorespitecareisavailableandappropriatetopatient,familyandcarerneeds
Relevantandhighqualityinformationisaccessibletoindividualsandconveyedinanappropriatemanner
Measure
•Writtenevidencedemonstratestimelyassessmentandreviewtoidentify,record,addressandreviewchangingneeds
•Localstrategicplansindicatehowrespitecarewillbedelivered
•Writtenevidencedemonstratesinformationpathwaysareinplace,implementedandevaluated
Timescale
Medium
Long
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
20.Palliativeandendoflifecareservicesshouldbeplannedanddevelopedwithmeaningfulpatient,familyandcarerinvolvement,facilitatedandsupportedasappropriateandprovidedinaflexiblemannertomeetindividualandchangingneeds
21.Servicesshouldbeprioritisedfortheprovisionofequipment,transportandadaptations,forallpatientswhohaverapidlychangingneeds
22.Policiesshouldbeinplaceinrespectofadvancecareplanningforpatientswithpalliativeandendoflifecareneeds
Responsibility
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyPatient&ClientCouncilCommunitySectorVoluntarySectorIndependentSector
HSCBoardLCGsHSCTrustsPublicHealthAgencyNIAmbulanceTrust
LCGsHSCTrustsCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Patients,familiesandcarersarefullyinvolvedinplanningpalliativeandendoflifecareservices
•EachTrusttoprovideevidenceofrobustactionandcontinencyplans•Patientswithrapidlychangingpalliativeandendoflifecareneedshaveaccesstoserviceswhichareresponsivetoassessedneed
Patientshavetheopportunitytodiscussandrecordtheirpreferencesforcare
Measure
•Focusgroupsandpopulationsurveys•Localstrategicplansindicatehowtheywillinvolvepatients,familiesandcarersinpalliativeandendoflifecareplanning
•Protocolsareinplacetoenableservicestobeprioritisedinresponsetoidentifiedpalliativeandendoflifecareneeds
•Policiesforadvancedcareplanningareinplace,implementedandevaluated
Timescale
Short
Medium
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
23.Toolstoenablethedeliveryofgoodpalliativeandendoflifecare,forexample,theGoldStandardFramework,PreferredPrioritiesforCare,MacmillanOut-of-hourstoolkitortheLiverpoolCarePathway,shouldbeembeddedintopracticeacrossallcaresettingswithongoingfacilitation
24.Allout-of-hoursteamsshouldbecompetenttoprovideresponsivegeneralistpalliativeandendoflifecareandadvicetopatients,carers,familiesandstaffacrossallcommunitybasedcaresettings
Responsibility
LCGsHSCTrustsPrimaryCareCommunitySectorVoluntarySectorIndependentSector
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyVoluntarySectorIndependentSector
Quality Outcome
Thecareofpatientswithpalliativeandendoflifecareneedsisimprovedthroughimplemen-tationofbestpracticetoolsandguidelines
Patients,familiesandcarershaveout-of-hoursaccesstoresponsivegeneralistpalliativeandendoflifecareandadvice,tosustaincareincommunitybasedsettings
Measure
•Writtenevidencetodemonstratebestpracticetoolsandguidelinesareinuseacrossallcaresettingsandareauditedforeffectivenessacrossallcaresettings
•Localstrategicplansindicateactionstoensurethatout-of-hoursgeneralistpalliativeandendoflifecareandadviceisavailableacrossallcommunitybasedcaresettings
Timescale
Medium
Medium
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SECTION 7Action Plan for Quality Palliative and End of Life Care
Living MattersDying Matters
Recommendation
25.Accesstospecialistpalliativecareadviceandsupportshouldbeavailableacrossallcaresettings24/7
Responsibility
HSCBoardLCGsHSCTrustsPrimaryCarePublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector
Quality Outcome
Patientswithidentifiedcomplexneed,theirfamiliesandcarershaveaccesstospecialistpalliativecareadviceandsupport24/7
Measure
•Writtenevidencedemonstratesthatarrangementsforaccessingspecialistpalliativeandendoflifecaresupport24/7areinplace,implementedandauditedforeffectiveness
Timescale
Medium
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Conclusion
Palliativeandendoflifecareistheactive,holisticcareofpatientswithadvancedprogressiveillness.ThisStrategyidentifiespalliativeandendoflifecareasacontinuumthatcanevolveasaperson’sconditionprogresses.Itisanintegralpartofthecaredeliveredbyhealthandsocialcareprofessionals,aswellasfamiliesandcarers,tothoselivingwith,anddyingfromanyadvanced,progressiveandincurableconditions.Compassionatecaringisattheheartofgoodpalliativeandendoflifecareandfocusesonthepersonandwhatmatterstothemratherthanthedisease,aimingtoensurequalityoflifeforthoselivingwithanadvanced,non-curablecondition.
TheStrategyrecognisesthehistoryofoutstandingcareprovidedbythehospicemovementinNorthernIreland,whilethemanylocalexemplarshighlighttheongoingcommitmenttodevelopinghighqualityandinnovativecareacrossthewiderstatutory,independentandvoluntarysectors.
‘LivingMatters:DyingMatters’providesclearvisionanddirectionfortheplanninganddeliveryofhighqualitycare,andidentifiesanoverarchingModelforPalliativeandEndofLifeCareasavehicleforbestpractice.TurningthisStrategyintoarealitywillrequireownership,leadership,andengagementatalllevelsofpolicy,planning,commissioning,educationanddelivery.Itcallsforacommitmenttochangecultureandensurethatthevisionforpalliativeandendoflifecareisrealised.
Tomeetthischallenge,anImplementationBoardrepresentativeofkeystakeholderswillbeestablishedwitharemittoensurethattherecommendationscontainedwithintheStrategyaredevelopedandembeddedintopractice.Keystakeholderswillincludepublic,independent,community,andvoluntarysectorsaswellasthepatients,familiesandcarerswhoareattheveryheartoftheStrategy’svision.
TheImplementationBoardwillsupportthereformandmodernisationofpalliativeandendoflifecareinNorthernIreland,includingprioritisationofcommissioningarrangementsforservicedelivery.ArrangementswillalsobedevelopedtomonitorandevaluatetheStrategy.
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Living MattersDying Matters
Conclusion
‘LivingMatters:DyingMatters’presentsasignificantchallengeoverthenextfiveyears,howeverafoundationofcareisalreadyinplacewhichwillbebuiltuponanddevelopedsothatthevisionofqualitypalliativeandendoflifecareforallwhorequireitbecomesareality.
‘You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to
live until you die.’
Dame Cicely Saunders, founder of the modern hospice movement.
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APPENDIX 1Membership of the Steering Group
Member Position Organisation
MartinBradley(Chair) ChiefNursingOfficer DHSSPS
ChristineJendoubi DirectorofPrimaryCare DHSSPS
MaeveHully ChiefExecutive Patientand ClientCouncil
ProfessorJudithHill ChiefExecutive NIHospice
MaryHinds DirectorofNursing&AHP PublicHealth Agency
DrIanClarkson MacmillanGPFacilitator
DrFrancesRobinson ConsultantPalliativeCare WHSCT
FionnualaMcAndrew DirectorSocialCare HSCBoard
MichaelBloomfield ChairReformand HSCBoard ModernisationPalliativeCare SteeringGroup
LornaNevin SupportiveandPalliative NorthernIreland CareCo-ordinator CancerNetwork
AnneMills NursingOfficer DHSSPS
GillianSeeds HeadofPrimaryCare DHSSPS DevelopmentUnit
KarenDawson PrimaryCareDevelopmentUnit DHSSPS
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APPENDIX 2Abbreviations
ACT AssociationforChildren’sPalliativeCare
AHP AlliedHealthProfessional
COPD ChronicObstructivePulmonaryDisease
CPR Cardio-PulmonaryResusitation
DDA DisabilityDiscriminationnAct
DNAR DoNotAttemptResuscitation
DoH DepartmentofHealth(England)
GMS GeneralMedicalServices
GSF GoldStandardFramework
HEI HigherEducationInstitutions
HSC HealthandSocialCare
ICT InformationandCommunicationTechnology
LCG LocalCommissioningGroup
LCP LiverpoolCarePathway
MCN ManagedClinicalNetwork
NCPC NationalCouncilforPalliativeCare
NICE NationalInstituteforHealthandClinicalExcellence
NICaN NorthernIrelandCancerNetwork
NISAT NorthernIrelandSingleAssessmentTool
OOH Out-of-Hours
PfA PrioritiesforAction
PPC PreferredPlaceofCare
QOF QualityandOutcomesFramework
R+D ResearchandDevelopment
WHO WorldHealthOrganisation
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APPENDIX 3Glossary of terms
Acute Services Healthcareandtreatmentprovidedmainlyinhospitals.
Advance Care Planning Advancecareplanningseekstorecordaperson’sdecisionsforfuturecare,toensurethatcareisplannedanddeliveredinresponsetotheexpressedneedsandpreferencesofpatients,familiesandcarers.Theprocessmaytakeplaceinthecontextofananticipateddeteriorationintheindividual’sconditioninthefuture.
Allied Health ProfessionalsGroupsofprofessionalsworkinginthehealthandsocialcareservicesincludingphysiotherapists,occupationaltherapists,speechtherapists,chiropodists/podiatrists,dieticiansandorthoptists.
Care Home Aresidentialhomewhichprovideseithershortorlongtermaccommodationwithmealsandpersonalcare(e.g.helpwithwashingandeating).Somecarehomes,knownasnursinghomes,alsohaveregisterednurseswhoprovidenursingcareformorecomplexhealthneeds.
Care PlanTheoutcomeofaneedsassessment.Adescriptionofwhatanindividualneedsandhowtheseneedswillbemet.Acareplanshouldreflectthechoicesmadebyapersonabouttheircare.Inthecaseofpeopleapproachingtheendoftheirlife,thismaysetouthowtheywishtobecaredforandwheretheywouldwishtodie.
CarerCarersarepeoplewho,withoutpayment,providehelpandsupporttoafamilymemberorfriendwhomaynotbeabletomanageathomewithoutthishelpbecauseoffrailty,illnessordisability.Thiscanincludecaringforanindividualwhoisapproachingtheendoftheirlife.
Carer’s Assessment Anassessment,carriedoutbyasocialworkeroramemberofsocialservices,whichenablesanunpaidcarertodiscussthehelptheyneedtocare,to
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Living MattersDying Matters
APPENDIX 3Glossary of terms
maintaintheirownhealthandtobalancecaringwiththeirlife,workandfamilycommitments.TheCarersandDirectPaymentsAct(NI)2002placesarequirementonTruststoinformcarersoftheirrighttoacarer’sassessmentandgivesTruststhepowertosupplyservicesdirectlytocarerstohelpthecarerintheircaringrole.Carershaveastatutoryrighttoacarer’sassessmentwhichallowsforanassessmenttobecarriedoutevenwherethepersoncaredforhasrefusedanassessmentortheprovisionofpersonalsocialservices.
Chronic ConditionAlongtermdiseaselastingmorethan6months.Theyarenon-communicable,involvesomeleveloffunctionalimpairmentordisabilityandareusuallyincurable.Chronicconditionscanaffectpeoplephysically,mentallyandemotionally.Examplesinclude:diabetes,asthma,epilepsy,cancer,heartdisease;andarthritis.
Chronic Obstructive Pulmonary Disease (COPD) Acollectionoflungdiseasesincludingchronicbronchitis,emphysemaandchronicobstructiveairwaysdisease,allofwhichcanoccurtogetherandmakebreathingdifficult.COPDisaprogressivediseaseandoneofthemostcommonrespiratorydiseasesintheUK.Itusuallyaffectspeopleovertheageof40.
CommissioningTheprocessofidentifyinglocalhealthandsocialcareneeds,makingagreementswithserviceproviderstodeliverservicestomeettheseneeds,andmonitoringoutcomes.Theprocessofcommissioningseekstoimprovequalityoflifeandhealthoutcomesforpatientsandcarers.
Community health and care servicesServicesprovidedoutsidethehospitalsettingbyhealthandsocialcareprofessionals.
DementiaArangeofprogressive,terminalorganicbraindiseases.Symptomsincludegradualandprogressivedeclineinmemory,reasoningandcommunicationskills,andabilitytocarryoutdailyactivities,andlossofcontrolofbasicbodilyfunctionscausedbystructuralandchemicalchangesinthebrain.
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APPENDIX 3Glossary of terms
Direct payments DirectPaymentshavebeenavailablesince1996andaimtopromoteindependencebygivingpeopleflexibility,choiceandcontroloverthepurchaseanddeliveryofservicesthatsupportthem.IndividualscanopttopurchaseservicestailoredtosuitthembymeansofaDirectPaymentfromtheHSCTrust.From19April2004DirectPaymentswereextendedtoawiderrangeofserviceusersundertheCarersandDirectPaymentsAct(NorthernIreland)2002toincludecarers,parentsofdisabledchildrenanddisabledparents.
Disease Trajectory Theexpectedpatternbywhichaconditionprogressesovertime.Differentdiseaseshavedifferentpatternsoftrajectory.Maintrajectoriesidentifiedincludecancer,organfailureandphysicaland/orcognitivefrailityincludingdementia.
District/Community Nurse District/Communitynursesvisitpeopleintheirownhomesorinresidentialcarehomes,providingcareforpatientsandsupportingfamilymembers.Theyworkwithpatientstoenablethemtocareforthemselvesorwithfamilymembersandcarerssupportingthemincaringtheirresponsibilities.
Do Not Attempt Resuscitation Awrittenorderfromadoctorthatresuscitationshouldnotbeattemptedintheeventofapersonsufferingcardiacorrespiratoryarrest.Suchanordermaybeconsideredappropriateincaseswheresuccessfulrestorationofthecirculationislikelytobefollowedbyaqualityoflifethatwouldbeunacceptabletothepatient,orwhencardiacorrespiratoryarrestistheendresultofadiseaseprocessinwhichappropriatetreatmentoptionshavebeenexhausted.
End of LifeAperiodoftimeduringwhichaperson’sconditionisactivelydeterioratingtothepointwheredeathisexpected.
End of Life Care Services Endoflifecareisanintegralpartofthewiderconceptofpalliativecareandmanyofthesameprincipleswillapply.Theemphasisonendoflifecarefocusesonhelpingallthosewithadvancedprogressiveandincurable
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conditionstoliveaswellaspossibleuntiltheydie.Itenablesthepalliativecareneedsofbothpatientandfamilytobeidentifiedandmetthroughoutthelastphasesoflifeandintobereavement.Itincludesmanagementofpainandothersymptomsandprovisionofpsychological,social,spiritualandpracticalsupport.
General Palliative Care Carethatisdeliveredbymulti-disciplinaryteamsinprimaryandcommunitycaresettings,hospitalunitsandwards.Thisisthelevelofcarerequiredbymostpeopleandisprovidedbynonpalliativeandendoflifecarespecialists.
Gold Standards Framework (GSF) Asystematicevidencebasedapproachtooptimisingthecareforpatientsnearingtheendoflife,deliveredbygeneralistproviders.Itisconcernedwithhelpingpeopletolivewelluntiltheendoflife.
Health and Social Care (HSC) Hospitalservices,familyandcommunityhealthservicesandpersonalsocialservices.
Health and Social Care Providers Organisations(includingpublic,independentandvoluntary/community)whichprovidehealthand/orsocialcareservices,forexampleHealthandSocialCareTrusts,hospices,voluntaryandcommunityorganisations.
Holistic Care Comprehensivecarethataddressesthesocial,psychological,emotional,physicalandspiritualneedsoftheindividual.
Hospice Hospicesprovidecareandsupporttopeopleattheendoftheirlifeandtheircarers,througharangeofservicessuchasin-patientcare,daycare,communityservices,out-patientappointments,sittingservices,respitecareandbereavementcounselling.
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Integrated Care Pathway IntegratedCarePathwayssetoutthestepsinthecareofapatientwithaspecificconditionanddescribetheexpectedprogressofthepatientastheirconditionprogresses.
Key Worker Anamedmemberofamulti-disciplinaryteamwithparticularresponsibilityforco-ordinatingbothcommunicationandtheprovisionofcaretothepatient,theirfamilyandcarers.Thekeyworkerundertakesapivotalroleinliaisingbetweenallpartiesinvolvedinapatient’sendoflifecaretoensurethatthisisplannedandprovidedinastreamlinedway.
Life-limiting Condition Anyillnesswherethereisnoreasonablehopeofcureandfromwhichthepersonwilldie.
Liverpool Care Pathway (LCP) TheLiverpoolCarePathwayfortheDyingPatientwasoriginallydevelopedtotransferthehospicemodelofcareintoothercaresettings.Itisamulti-professionaldocumentwhichprovidesevidence-basedguidelinesforcareinthelastdaysandhoursoflife.TheLCPprovidescriteriafordiagnosingdyingandguidanceonvariousaspectsofcare,includingsymptomcontrol,comfortmeasuresandanticipatoryprescribing.Psychologicalandspiritualcareandfamilysupportisincluded.
Macmillan Out-of-Hours Toolkit Thistoolkitaimstoprovidesupport,guidanceandpracticalsolutionstothoseresponsiblefortheimplementationofout-of-hourspoliciesandprocedure.
Managed Clinical Network (MCN) Anetworkofmulti-professional,multi-disciplinaryandcross-boundarystaff(includingdoctors,pharmacists,nurses,healthvisitors,physiotherapistsandoccupationaltherapists)andorganisationsfromprimary,secondary,voluntaryandindependenthealthcareworkingtogethertomakesurethathighqualityeffectiveservicesareprovidedequitably.MCNswillalsoinvolvepatientswiththeexperienceoftheparticularillness.
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Multi-disciplinary Team Agroupofpeoplefromdifferentdisciplineswhoworktogethertoprovideand/orimprovecareforpatientswithaparticularcondition.Thecompositionofmulti-disciplinaryteamswillincludepeoplefromvariousdisciplines(bothhealthcareandnon-healthcare).
National Institute for Health and Clinical ExcellenceAnindependentorganisationcoveringEnglandandWales,responsibleforprovidingguidanceonthepromotionofgoodhealth.NICEprovidesobjectiveguidanceontheclinicalandcosteffectivenessofdrugsandtreatments.TheDHSSPSestablishedaformallinkwithNICEon1July2006andreviewsallguidancepublishedbytheInstitute,fromthatdate,foritsapplicabilitytoNorthernIreland.
NI Cancer Network TheNICancerNetwork(NICaN)aimstoworktowardsthecontinuousimprovementincancercareandcancersurvivalforthepeopleofNorthernIreland.Itdoesthisbysupportinggroupsofhealthprofessionals,patientsandcharitiestoworktogetherinaco-ordinatedway,ensuringgoodcommunicationandsharinggoodpractice.
NI Single Assessment Tool (NISAT) Asystemdesignedtocapturetheinformationrequiredforholistic,person-centredassessmentofthehealthandsocialcareneedsoftheolderperson.Thetoolhascomponentpartswhichwillbecompletedaccordingtothelevelofhealthandsocialcareneedsexperiencedbytheolderperson,fromnon-complextocomplex.NISATfocusesontheperson’sabilitiesandstrengthsratherthantheirdisabilities.UseofNISATwillstandardiseandstreamlineassessmentandcareplanningprocesses.
Out-of-Hours Theout-of-hoursperiodisusually6.30pmto8amonweekdaysandallweekendsandbankholidays.UnderthenewGeneralMedicalServicescontract(2004),GPscanchoosenottoprovide24-hourcarefortheirpatients.Duringthistime,localcommissionersareresponsiblefortheprovisionofGPservicesforlocalpeople.
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Palliative CareTheactive,holisticcareofpatientswithadvancedprogressiveillness.Managementofpainandothersymptomsandprovisionofpsychological,socialandspiritualsupportisparamount.Thegoalofpalliativecareistoachievethebestqualityoflifeforpatientsandtheirfamilies.Manyaspectsofpalliativecarearealsoapplicableearlierinthecourseoftheillnessinconjunctionwithothertreatments.
Preferred Priorities for Care Aprocessforidentifyingandrecordinganindividual’spersonalpreferencesandchoiceabouthowtheircareisprovided.
Primary Care Familyandcommunityhealthservicesandmajorcomponentsofsocialcarewhicharedeliveredoutsidethehospitalsettingandwhichanindividualcanaccessonhis/herownbehalf.Primarycarewillusuallybeaperson’sfirstpointofcontactwiththeHSC(e.g.GPs,dentists).
Priorities for Action (PfA) PrioritiesforActionsetsouttheMinister’sannualprioritiesandkeychallengesfortheHSC.PfAprovidestheplatformformonitoringtheperformanceoftheHSCinprovidingacontinuouslyimprovingservice.
Prognosis Theexpectedprogressionofadiseaseanditsoutcomefortheindividual.
Quality and Outcomes Framework AcomponentoftheGeneralMedicalServicescontractforGPs.TheQOFsetstargetsforGPsagainstevidence-basedcriteriacoveringarangeofgeneralandcondition-specificindicators.Paymentstopracticesarecalculatedonthebasisoftheextenttowhichthesetargetsaremet.
Respite Care Providedonashorttermandtimelimitedbasis,fromafewhoursperweektoanumberofweeks,respitecarecaneitherbeplannedorprovidedinresponsetoanemergency.Itcanbedoneinavarietyofways,eitheroutsideorinsideof
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thecaredforperson’shome,andshouldbetailoredtotheneedsofindividualfamiliesandcarers.
Secondary Care Careoftenprovidedinahospitalorparticularspecialisedcentre.Secondarycaremaybeaccessedbyapatientdirectlybutisusuallyasaresultofreferralfromprimarycare.
Service Framework Evidencebasedstandardstoimprovehealthandsocialcareoutcomes,reduceinequalitiesinhealthandsocialwell-beingandimproveserviceaccessanddelivery.Serviceframeworkssetoutstandardsofcarethatpatients,clients,familiesandcarerscanexpecttoreceive.
Social Care Careservicesforvulnerablepeople,includingthosewithspecialneedsbecauseofoldageorphysicalormentaldisability,orchildreninneedofcareandprotection.Socialcareserviceswhichsupportpeopleintheirdaytodaylivestohelpthemplayafullpartinsociety.Socialcareisusuallyprovidedinresponsetoaneedsassessmentandcanincludeservicesprovidedinacarehome,theprovisionofahomehelpfacility,mealsonwheelsandtheprovisionofequipment.
Specialist Palliative Care Themanagementofunresolvedsymptomsandmoredemandingcareneedsincludingcomplexpsychosocial,endoflifeandbereavementissues.Itisprovidedbyspecialistpersonnelwithexpertknowledge,skillsandcompetences.
Symptom Management Anyinterventionusedtohelprelievetheindividual’spain,discomfortorothernegativeexperiencesthatariseaseitheradirectorindirectresultoftheirmedicalconditionortheagingprocess.
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Transitional Care Thepurposeful,plannedprocessthataddressestheclinical,psychosocialandeducationalneedsofadolescentsandyoungadultswithchronicphysicalandmedicalconditionsfromachildcentredtoadultorientedhealthcare.
Whole Systems Approach Anapproachtocarethatconsiderstheneedsofthewholeperson,theirfamilyandcarersandhowcarecanbestbeplanned,deliveredandco-ordinatedirrespectiveofcaresetting.
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APPENDIX 4References
1NorthernIrelandCancerNetwork(2008)DiagnosingDying–DefiningEndofLifeCare;SupportiveandPalliativeCareNetworkGroup.Availableonline:http://www.cancerni.net/publications/definingendoflifecareforpeoplewithcancerandnoncancerdiagnoses[accessed16thNovember2009]
2NationalConsensusProjectforQualityPalliativeCare.Clinicalpracticeguidelinesforqualitypalliativecare.Availableonline:http://www.nationalconsensusproject.org.[accessed16thNovember2009]
3WorldHealthOrganisation(2004):PalliativeCare-TheSolidFacts.WorldHealthOrganisation,Denmark.Availableonline:http://www.euro.who.int/document/E82931.pdf[accessed16thNovember2009]
4EuropeanParliament(2008):PalliativeCareintheEuropeanUnion;PolicyDepartment,EconomicandScientificPolicy.Availableonline:http://www.europarl.europa.eu/activities/committees/studies/download.do?file=21421.[accessed16thNovember2009]
5DepartmentofHealth(2008):EndofLifeCareStrategy–PromotingHighQualityCareforallAdultsattheEndofLife.DH,London.Availableonline:http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277[accessed16thNovember2009]
6AllWalesPalliativeCarePlanningGroup(2008):ReporttoMinisterforHealthandSocialServicesonPalliativeCareServicesAvailableonline:http://www.wales.nhs.uk/documents/palliativecarereport.pdf [accessed16thNovember2009]
7ScottishGovernment(2008):LivingandDyingWell–ANationalActionPlanforEndofLifeCareinScotland;ScottishGovernment,Availableonline:http://www.scotland.gov.uk/Publications/2008/10/01091608/0[accessed16thNovember2009]
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8HealthServiceExecutive/IrishHospiceFoundationIreland(2008):PalliativeCareforAll–IntegratingPalliativeCareIntoDiseaseManagementFrameworks;HealthServiceExecutive/IrishHospiceFoundationIreland.Availableonline:http://www.hse.ie/eng/services/Publications/services/Older/Palliative_care_for_all1.pdf[accessed16thNovember2009]
9BlumR.W,GarellD,HadgmanC.Hetal(1993)TransitionfromChild-centredtoAdultHealthcareSystemsforAdolescentswithChronicConditions.ApositionpaperoftheSocietyforAdolescentMedicine.JournalofAdolescentHealth14,570-6
10HouseofCommonsHealthCommittee(2004)PalliativeCareFourthReportofSession2003-04HouseofCommons,London
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12NISRA(2009)RegistrarGeneralNorthernIrelandAnnualReport2008.NISRABelfast
13Gomes,B&Higginson,I.(2006)Factorsinfluencingdeathathomeinterminallyillpatientswithcancer:systematicreview.BMJ332:515-521
14ThreeServiceFrameworkshavebeendevelopedattimeofwriting–CardiovascularServiceFramework(DHSSPSpublished2009);RespiratoryServiceFramework(DHSSPSconsultation2009)andCancerServiceFramework(DHSSPSconsultation2009)forfurtherinformationandaccessonline:http://www.dhsspsni.gov.uk/sqsd-standards-service-frameworks[accessed16thNovember2009]
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17WorldHealthOrganisation.DefinitionofPalliativeCare.Availableonline:http://www.who.int/cancer/palliative/definition/en/[accessed16thNovember2009]
18NationalCouncilforPalliativeCare2008,CreativePartnerships:Improvingqualityoflifeattheendoflifeforpeoplewithdementia.Acompendium,London,NCPC
19NationalCouncilforPalliativeCare(2007):EndofLifeCare–ACommissioningPerspective;NationalCouncilforPalliativeCare,London.
20Lynn.J&Adamson.D.M.(2003)LivingWellattheendofLife,AdaptingHealthCaretoSeriousChronicIllnessinOldAgeRANDHealthALSOMurray,S.A.,Kendall,M.,Worth,A.,Benton,T.f.,Clausen,H.(2005),Illnesstrajectoriesandpalliativecare.BritishMedicalJournal,330:1007-1011
21DHSSPS(2000)PartnershipsinCaringStandardsforService.DHSSPSBelfast
22NationalCouncilforPalliativeCare,(2005):FocusonPolicy:BranchingOut.NationalCouncilforPalliativeCare,London.
23DepartmentofHealth(2008):EndofLifeCareStrategy–PromotingHighQualityCareforallAdultsattheEndofLife.DH,London.Availableonline:http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277[accessed16thNovember2009]
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25GoldStandardsFramework,Availableonline:www.goldstandardsframework.nhs.uk/[accessed16thNovember2009]
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27NICancerNetwork(2008),AFrameworkforGeneralistandSpecialistPalliativeandEndofLifeCarecompetency.SupportiveandPalliativeCareNetworkMultidisciplinaryEducationWorkStrand.Availableonline:www.cancerni.net/publications/educationframeworkforgeneralistspecialistpalliativecare[accessed16thNovember2009]
28Kirk,S(2008)Transitionsinthelivesofyoungpeoplewithcomplexhealthneeds.Child:Care,HealthandDevelopment.334(5)567-575
29UniversityofUlster/NorthernIrelandCancerNetwork(2008):ReformandModernisationofPalliativeCare–DevelopingaRegionalModelforPalliativeCare;UniversityofUlster,Jordanstown.
30DHSSPSNI(2007)GuidanceonStrengtheningPersonalandPublicInvolvementinHealthandSocialCare.CircularHSC(SQSD)29/07.DHSSPSNI,Belfast
31UniversityofUlster/NorthernIrelandCancerNetwork(2008):ReformandModernisationofPalliativeCare–DevelopingaRegionalModelforPalliativeCare;UniversityofUlster,Jordanstown.
32DHSSPS/NIPracticeandEducationCouncil/RoyalCollegeofNursing(2008)ImprovingthePatientClientExperienceDHSSPSNI,Belfast
33NationalInstituteforClinicalExcellenceNICE(2004)ImprovingSupportiveandPalliativeCareforPatientswithCancer.NationalInstituteforClinicalExcellence,London.
34DHSSPSNI(2003)BreakingBadNewsGuidelines.DHSSPSNI,Belfast
35DHSSPSNI(2008)TheNorthernIrelandSingleAssessmentTool(NISAT)GuidanceandAssessmentTool.DHSSPSNI,Belfast
36NICaNHolisticPalliativeCareAssessmentTool.Whenpilotcomplete,evaluationwillbeaccessibleonline: http://www.cancerni.net/og/documents/495
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37Mencap(2008):HealthcareforAll(TheMichaelReport)ReportoftheIndependentInquiryintoaccesstohealthcareforpeoplewithlearningdisabilities
38DisabilityDiscriminationAct1995 http://www.opsi.gov.uk/acts/acts1995/ukpga_19950050_en_l
39King’sCollege(2007):HolisticCommonAssessmentofSupportiveandPalliativecareNeedsforAdultswithCancer.ReporttotheNationalCancerActionTeam.NHSLondon
40TheCarersandDirectPaymentsAct(NorthernIreland)(2002)http://www.opsi.gov.uk/legislation/northernireland/acts/acts2002/nia_20020006_en_l
41PreferredPrioritiesforcare.Availableonline http://www.endoflifecareforadults.nhs.uk/eolc/CS310.htm.[accessed16thNovember2009]
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