Living Matters Dying Matters - HSCNI Bereavement …...Living Matters Dying Matters 5 Executive...

Living Matters Dying Matters

A Palliative and End of Life Care Strategy for Adults in Northern Ireland

March 2010

Living MattersDying Matters

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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


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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• 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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• 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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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


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


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


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


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

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SECTION 2Background


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


21

SECTION 2Background


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

22

SECTION 2Background


• 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.


23

SECTION 2Background


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


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.


25

SECTION 2Background


Figure 4:AModelforPalliative&EndofLifeCare

Disease Trajectories

2.20 Individualscanaccesspalliativecarefromdifferentroutes.Forsome,palliativecaremaybenecessaryasaresultofaconditioninherentfrombirthandthereforetheneedforcaremightextendoveralifetime.Forotherstheneedforthiscaremaybeasaresultofadeteriorationofanexistingchronicconditionthatwillrequireare-adjustmentofongoingcasemanagementarrangementstofocusspecificallyonpalliativeandendoflifecareneeds.Inotherinstancespalliativeandendoflifecaremaybetheoutcomeofanewlydiagnosedconditionwhereprognosismaybeshortorlongerterm.

2.21 Aspalliativecareisrelevanttopeoplewithawiderangeofconditions,attemptshavebeenmadetodeterminehowfunctionaldeclinediffersbetweendifferenttypesofconditions.Understandingdiseasetrajectories(howaconditionprogresses)canhelppredicthowbothpopulation-levelandindividualhealthandsocialcareneedsmaydevelop

26

SECTION 2Background


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


27

SECTION 2Background


A Whole Systems Approach to Palliative and End of Life Care

2.24Thedevelopment,commissioninganddeliveryofhighqualitypalliativeandendoflifecareservicesrequireawholesystemsapproach.Suchanapproachconsiderscaresystemsintheirentiretyandinrelationtoeachothersothathealthandsocialcareisplanned,designedanddeliveredacrosscaresettingstomeettheneedsofpatients,familiesandcarers.ThefollowingSections3-6explainhowthewholesystemsapproachcanbeapplied.

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SECTION 3Developing Quality Palliative and End of Life Care


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.


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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.


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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


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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.


35



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.


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SECTION 4Commissioning Quality Palliative and End of Life Care


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;



• 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.


39



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.



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



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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SECTION 5Delivering Quality Palliative and End of Life Care


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


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.


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.


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.


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.


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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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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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


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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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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Recommendation

4.Arangeofinter-professionaleducationanddevelopmentprogrammesshouldbeavailabletoenhancetheknowledge,skillsandcompetenceofallstaffwhocomeintocontactwithpatientswithpalliativeandendoflifecareneeds

5.Arrangementsshouldbeinplacewhichprovidefamiliesandcarerswithappropriate,relevantandaccessibleinformationandtrainingtoenablethemtocarryouttheircaringresponsibilities

6.Acollaborativeandcollegiateapproachtoresearchanddevelopmentshouldbeestablishedandpromotedtoinformplanninganddelivery,driveupqualityandimproveoutcomesinpalliativeandendoflifecare

Responsibility

VoluntarySectorHEIsEducationConsortia


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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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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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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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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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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Recommendation

17.Timelyholisticassessmentsbyamulti-disclipinarycareteamshouldbeundertakenwiththefamilyandcarersofpeoplewhohavepalliativeandendoflifecareneedstoensurethattheirneedsareidentified,recorded,addressedandreviewed

18.Respitecareshouldbeavailabletopeoplewithpalliativeandendoflifecareneedsinsettingsappropriatetotheirneed

19.Patients,theirfamiliesandcarersshouldhavetimelyaccesstoappropriateandrelevantinformation

Responsibility

LCGsHSCTrustsPrimaryCare

HSCBoardLCGsPublicHealthAgencyCommunitySectorVoluntarySectorIndependentSector


Quality Outcome

Familyandcarerneedsareidentifiedandaddressedbyanappropriatemember/sofamulti-disciplinaryteam

Accesstorespitecareisavailableandappropriatetopatient,familyandcarerneeds

Relevantandhighqualityinformationisaccessibletoindividualsandconveyedinanappropriatemanner

Measure

•Writtenevidencedemonstratestimelyassessmentandreviewtoidentify,record,addressandreviewchangingneeds

•Localstrategicplansindicatehowrespitecarewillbedelivered

•Writtenevidencedemonstratesinformationpathwaysareinplace,implementedandevaluated

Timescale

Medium

Long

Medium


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Recommendation

20.Palliativeandendoflifecareservicesshouldbeplannedanddevelopedwithmeaningfulpatient,familyandcarerinvolvement,facilitatedandsupportedasappropriateandprovidedinaflexiblemannertomeetindividualandchangingneeds

21.Servicesshouldbeprioritisedfortheprovisionofequipment,transportandadaptations,forallpatientswhohaverapidlychangingneeds

22.Policiesshouldbeinplaceinrespectofadvancecareplanningforpatientswithpalliativeandendoflifecareneeds

Responsibility


HSCBoardLCGsHSCTrustsPublicHealthAgencyNIAmbulanceTrust

LCGsHSCTrustsCommunitySectorVoluntarySectorIndependentSector

Quality Outcome

Patients,familiesandcarersarefullyinvolvedinplanningpalliativeandendoflifecareservices

•EachTrusttoprovideevidenceofrobustactionandcontinencyplans•Patientswithrapidlychangingpalliativeandendoflifecareneedshaveaccesstoserviceswhichareresponsivetoassessedneed

Patientshavetheopportunitytodiscussandrecordtheirpreferencesforcare

Measure

•Focusgroupsandpopulationsurveys•Localstrategicplansindicatehowtheywillinvolvepatients,familiesandcarersinpalliativeandendoflifecareplanning

•Protocolsareinplacetoenableservicestobeprioritisedinresponsetoidentifiedpalliativeandendoflifecareneeds

•Policiesforadvancedcareplanningareinplace,implementedandevaluated

Timescale

Short

Medium

Medium

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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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Recommendation

25.Accesstospecialistpalliativecareadviceandsupportshouldbeavailableacrossallcaresettings24/7

Responsibility


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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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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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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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]



102


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

11NationalCouncilforPalliativeCare(2005)FocusonPolicyBranchingOut.NationalCouncilforPalliativeCare,London

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]

15WorldHealthOrganisation(1990)CancerPainReliefandPalliativeCare.WorldHealthOrganisation,Geneva

16Sepulveda.C,Marlin.A,Yoshida.T,&Ullrich(2002)PalliativeCaretheWorldHealthOrganisation’sglobalperspective.JournalofPainandSymptomManagement,24(2)91-96.



103



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]

24DOH,WhitePaper(2007)Trust,assuranceandsafety-theregulationofhealthprofessionalsinthe21stcentury.DOHLondon

25GoldStandardsFramework,Availableonline:www.goldstandardsframework.nhs.uk/[accessed16thNovember2009]

26LiverpoolCarePathway,Availableonline:http://www.mcpcil.org.uk/liverpool-care-pathway/index.htm[accessed16thNovember2009]



104


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



105



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]

42GoldStandardsFramework.Availableonline:http://www.goldstandardsframework.nhs.uk/[accessed16thNovember2009]

43TheShipmanInquiry(2004)FourthReport–TheRegulationofControlledDrugsinthecommunity.HMSO,Norwich.Availableonline:http://www.the-shipman-inquiry.org.uk/fourthreport.asp [accessed16thNovember2009]

44LiverpoolCarePathwayAvailableonline:http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/.[accessed16thNovember2009]

45NationalEndofLifeCareProgramme.Availableonline:http://www.endoflifecareforadults.nhs.uk/eolc/[accessed16thNovember2009]

46NationalInstituteforClinicalExcellenceNICE(2004)ImprovingSupportiveandPalliativeCareforPatientswithCancer.NationalInstituteforClinicalExcellence,London.

47DHSSPSNI(2009):NIHealthandSocialCareServicesStrategyforBereavementCare;DHSSPSNI.Belfast


106

APPENDIX 5Bibliography


AddingtonHallJ.(1998)ReachingOut:specialistpalliativecareforolderadultswithnon-malignantdiseases.NCHSPCS,London

AddingtonHallJandHigginsonI(2001)Palliativecarefornon-cancerpatients.OxfordUniversityPress,Oxford

AgeConcern/HelptheAged(2009)StayingWellandFeelingGood

AllWalesPalliativeCarePlanningGroup(2008)ReporttoMinisterforHealthandSocialServicesonPalliativeCareServices

AssociationforChildren’sPalliativeCare(ACT)(2007)TransitionCarePathwayAvailableonline:http://www.endoflifecareforadults.nhs.uk/eolc/sacpc.htm [accessed16thNovember2009]

AuditScotland(2008)ReviewofPalliativecareServicesinScotland.AuditScotland.Edinburgh

BlumRW,Garell.D,HadgmanC.H.etal.(1993)Transitionfromchild-centredtoadulthealth-caresystemsforadolescentswithchronicconditions.ApositionpaperoftheSocietyforAdolescentMedicine,JournalofAdolescentHealth.14:570-6

Brown,E.Chambers,E.JandEggeling,C.(2007)EndofLifeCareinNephrology,FromAdvancedDiseasetoBereavement.OxfordUniversityPress,Oxford

Brunnhuber.K,Nash.S,Meier.D.E,Weissman.D.E&Woodcock.J(2008).Puttingevidenceintopractice:Palliativecare.BMJPublishingGroupLondon

CommonwealthofAustralia(2000)NationalPalliativeCareStrategy,ANationalFrameworkforPalliativeCareServiceDevelopment.CommonwealthofAustralia

Connolly.M,Perryman.J,McKenna.Y,Orford.Jetal(2009)SAGE&THYME,Amodelfortraininghealthandsocialcareprofessionalsinpatient–focussedsupport.PatientEducationandCounselling.76(1)


107



DepartmentofHealth(2008):EndofLifeCareStrategy–PromotingHighQualityCareforallAdultsattheEndofLife.DH,London

DepartmentofHealth(2008):BetterCare:BetterLivesImprovingOutcomesforchildren,youngpeopleandtheirfamilieslivingwithlife-limitingandlife-threateningconditions.DHLondon

DepartmentofHealth(2006)NHSEndofLifeCareProgrammeProgressreport.DH,London

DepartmentofHealth(2006)’OurHealth,ourcare,oursay’anewdirectionforcommunityservices.DH,London

DepartmentofHealth(2003)BuildingontheBest,Choice,ResponsivenessandEquity.DH,London

DepartmentofHealth(2002)NationalSurveysofNHSPatients:CancerNationaloverview1999-2000.DH,London

DepartmentofHealth(2001)TheNHSCancerPlan(2001)DH,London

DeVogel-Voogt,E,vanderHeide,A,vanLeeuwen.AnnaF.,Visser.A,P,vanderRijt,CarinCDandvanderMaas,PaulJ,(2007)Patientevaluationofendoflifecare.PalliativeMedicine21:243-248

DHSSPSNI(2009)NIHealthandSocialCareServices–StrategyforBereavementCare.DHSSPSNI,Belfast

DHSSPS/NIPracticeandEducationCouncil/RoyalCollegeofNursing(2008)ImprovingthePatientClientExperience.DHSSPSNI,Belfast

DHSSPSNI(2008)TheNorthernIrelandSingleAssessmentTool(NISAT)GuidanceandAssessmentTool.DHSSPSNI,Belfast

DHSSPS/UniversityofUlster(2007)ComplexNeeds–theNursingResponsetoChildrenandYoungPeoplewithComplexPhysicalHealthcareNeeds.

108



DHSSPSNI,Belfast.Availableonline:www.dhsspsni.gov.uk/complex_needs_report.pdf.[accessedon16thNovember2009]

DHSSPSNI,(2006)CaringforCarers–Recognising,ValuingandSupportingthecaringrole.DHSSPSNI,Belfast

DHSSPSNI(2006)CancerControlProgrammeforNorthernIreland.DHSSPSNI,Belfast

DHSSPSNI(2006)AStrategicFrameworkforRespiratoryConditions.DHSSPSNI,Belfast

DHSSPSNI,(2005),TheDHSSPS,TwentyYearVisionforHealthandWell-beinginNorthernIreland2005–2025.DHSSPSNI,Belfast

DHSSPSNI,(2004)ThePrimaryCareStrategyFramework,CaringforPeopleBeyondTomorrow.DHSSPSNI,Belfast

DHSSPSNI(2004)AHealthierFuture:ATwentyYearVisionforHealthandWell-beinginNorthernIreland2005-2025.DHSSPSNI,Belfast

DHSSPSNI2003)BreakingBadNewsGuidelines.DHSSPSNI,Belfast

DHSSPSNI(2002)DevelopingBetterServices-ModernisingHospitalsandReviewingStructures,DHSSPS,Belfast.

DHSSPSNI(2002)ValuingCarers–ProposalsforaStrategyforCarersinNorthernIreland.DHSSPSNI,Belfast

DHSSPSNI(2001)BestPractice–BestCare.DHSSPSNI,Belfast

DHSSPSNI(2000)PartnershipsinCaring-StandardsforService.DHSSPSNI,Belfast

DHSSPSNI(1996)CancerServices–InvestingfortheFuture.DHSSPSNI,Belfast


109



Dunckley,M.Aspinal,F.AAddington-Hall,J.Hughes,R.,andHigginsonI.J.,(2005)Aresearchstudytoidentifyfacilitatorsandbarrierstooutcomemeasureimplementation.InternationalJournalofPalliativeNursing(11)5,218-225

Dunlop,Retal(1998)Preferredvactualplaceofdeath:Hospitalpalliativecareteamexperience.PalliativeMedicine,3,197-201

Ellershaw,JandWard,C.(2003)Careofthedyingpatient:inthelasthoursordaysoflifeBMJ,326:330-34

Ellershaw,J.E,Wilkinson,S.(2003)CareoftheDying:APathwaytoExcellence.OxfordUniversityPress,Oxford

EndofLifeCareProgramme.Availableonline.http://eolc.cbcl.co.uk/eolc [accessed16thNovember2009]

ExleyC,FieldD,JonesLandStokesT.(2005):Palliativecareinthecommunityforcancerandendstagecardiorespiratorydisease:theviewsofpatients,laycarersandhealthcareprofessionals.PalliativeMedicine19:76-83.

Fitzsimons,D.Mullan,D.,Wilson,J.S.,Conway,B.,Corcoran,B.,Dempster,M.,Gamble,J.,Stewart,C.,Rafferty,S.,McMahon,M.,MacMahon,J.,Mullholland,P.,Stockdale,P.,Chew,E.,Hanna,L.,Brown,J.,Ferguson,.GandFogarty,D.(2007):Thechallengeofpatients’unmetpalliativecareneedsinthefinalstagesofchronicillness.PalliativeMedicine21:313-322.

Freidin,R.B.,Goldman,L.andCecil,R.R.(1980):Patient-physicianconcordanceinproblemidentificationintheprimarycaresetting.AnnualsofInternalMedicine93,490-493.

Froggatt,K(2005):DevelopingEndofLifecareforolderpeopleincarehomes.InternationalJournalofPalliativeNursing11(11)560-561

110



GeneralMedicalCouncil(2009):EndofLifeTreatmentandCare–GoodPracticeinDecisionMaking–adraftforconsultation.GeneralMedicalCouncil.London

GoldStandardsFramework.Availableonline:http://www.goldstandardsframework.nhs.uk/[accessed16thNovember2009]

Gomes.B&Higginson.I.J(2008)Wherepeopledie(1974-2030):pasttrends,futureprojectionsandimplicationsforcare.PalliativeMedicine;22:33-41:

Hanratty.B,Jacoby.AandWhitehead.M.(2008):Socioeconomicdifferencesinserviceuse,paymentandreceiptofillness-relatedbenefitsinthelastyearoflife:findingsfromtheBritishHouseholdPanelSurvey.PalliativeMedicine,22:248-255

HealthServiceExecutive/IrishHospiceFoundation(2008):PalliativeCareforAll-IntegratingPalliativeCareintoDiseaseManagementFrameworksHealthServiceExecutive/IrishHospiceFoundation.Dublin

HearnsJ,Higginson,I.J.(1999)Developmentandvalidationofacoreoutcomemeasureforpalliativecare:thepalliativecareoutcomescale.QualityHealthCare8:219-227

HelptheAged(2006)End-of-lifecareforolderpeople.HelptheAged.London

Hockley,J.,Dewar,B.,Watson,J.(2005)Promotingend-of-lifecareinnursinghomesusingan‘integratedcarepathway’JournalofResearchinNursingVol10:135-152

HouseofCommons,HealthCommitteePalliativecareFourthReportofSession2003-04)Availableonlinehttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4005424[accessed16thNovember2009]

Hudson.P,Aranda.S&Kristjanson.L.(2004):Informationprovisionforpalliativecarefamilies.EuropeanJournalofPalliativeCare11(4)


111



Hughes,R.,HigginsonI.J.,Addington-Hall,Jatal(2001)ProjecttoimpROveManagementOfTerminalillness(PROMOTE)JournalInterprofessionalCare15:398-9

King’sCollege(2007):HolisticCommonAssessmentofSupportiveandPalliativecareNeedsforAdultswithCancer.ReporttotheNationalCancerActionTeam.NHSLondon

KingsFund,(2008):Improvingchoiceatendoflife.AdescriptiveanalysisoftheimpactandcostsoftheMarieCurieDeliveringChoiceprogrammesinLincolnshire.London

Lewis.C.S.(1966)AGriefObserved.FaberandFaber,London

LiverpoolCarePathwayAvailableonline: http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/.[accessed16thNovember2009]

LuddingtonL,Cox,S.,Higginson.I.andLivesleyB.(2001)Theneedforpalliativecareforpatientswithnon-cancerdiseases:Areviewoftheevidence.InternationalJournalofPalliativeNursing.7:221-226

Lunney,J.R.,Lynn,JandHogan,C.(2002)ProfilesofolderMedicaresecendents.JournaloftheAmericanGeriatricsSociety50(6),1108–1112

Lynn.J&Adamson.D.M.(2003)LivingWellattheEndofLife,AdaptingHealthCaretoSeriousChronicIllnessinOldAgeRANDHealth

Lynn,J,Chaudhry,E.LinNoyles,S.Wilkinson,A.M.andSchuster,J.L.(2007)TheCommonSenseGuidetoImprovingPalliativeCare.OxfordUniversityPress,Oxford

Lynn,J,Schuster,J.L.,Wilkinson,A.MandLinNoyles,S.(2007)ImprovingCarefortheEndofLife.OxfordUniversityPress,Oxford

112



MarieCurieCancerCare,(2007)ExtendingpalliativecareeducationtonursinghomestaffacrosstheNorthernHealthSocialServicesBoardarea.MarieCurie,Belfast.

Murray,S,BoydK,etal(2002).Dyingoflungcancertocardiacfailure:prospectivequalitativeinterviewsstudyofpatientsandcarersinthecommunity.BMJ325:929

Mencap(2009):SixLives–ProvisionofPublicServicestoPeoplewithLearningDisabilities–ResponsetoHealthOmbudsman’sInvestigation.Mencap.London

Mencap/KeeleUniversity(2008):LivingandDyingwithDignity–BestPracticeGuidetoEndofLifeCareforPeoplewithaLearningDisability.Mencap.London

Murray,S.A.,Kendall,M.,Worth,A.,Benton,T.F.,Clausen,H.(2005)Illnesstrajectoriesandpalliativecare.BritishMedicalJournal,.330(7498):p5

NationalAuditOffice(2008):EndofLifeCare–ReportbytheComptrollerandAuditorGeneral.NAO,London

NationalCouncilforPalliativeCarewebsiteanddefinitions.www.ncpc.org.uk

NationalCouncilforPalliativeCareandTheNationalCentreforInvolvement(2009);AGuidetoInvolvingpatients,carersandthepublicinpalliativecareandendoflifecareservices.NationalCouncilforPalliativeCare,London

NationalCouncilforPalliativeCare(2009):OutoftheShadows:EndoflifecareforpeoplewithdementiaNationalCouncilforPalliativeCareLondon

NationalCouncilforPalliativeCare(2008):AFreshApproach:PalliativeandendoflifecareforpeoplewithChronicRespiratoryDiseaseNationalCouncilforPalliativeCare,London

NationalCouncilforPalliativeCare(2007):Focusoncommissioning,EndofLifeCareNationalCouncilforPalliativeCare,London


113



NationalCouncilforPalliativeCare(2007b):NationalSurveyofPatientActivityDataforSpecialistPalliativeCareServicesMDSFullReportfortheyear2006-2007.NationalCouncilforPalliativeCare,London

NationalCouncilforPalliativeCare,(2006):ChangingGearGuidelinesforManagingtheLastDaysofLifeinAdultsNationalCouncilforPalliativeCare,London

NationalCouncilforPalliativeCare,(2005):FocusonPolicy:BranchingOutNationalCouncilforPalliativeCare,London

NationalCouncilforPalliativeCare(2000):FulfillingLives,RehabilitationinPalliativeCareNationalCouncilforPalliativeCareLondon

NationalCouncilforPalliativeCare(1999)TheDefinitionandMeasurementofQualityinPalliativeCareBriefingPaperNo3TheNationalCouncilforPalliativeCare.London

NationalInstituteforHealthandClinicalExcellence(NICE)(2003)ChronicHeartFailure;ManagementofChronicHeartFailureinAdultsinPrimaryandSecondaryCare.NationalInstituteforClinicalExcellence,London

NationalInstituteforHealthandClinicalExcellence(NICE)(2004)ChronicObstructivePulmonaryDisease;ManagementofChronicObstructivePulmonaryDiseaseinAdultsinPrimaryandSecondaryCareNationalInstituteforHealthandClinicalExcellence,London

NationalInstituteforHealthandClinicalExcellence(NICE)(2007):Dementia–TheNICE-SCIEGuidelineonSupportingPeoplewithDementiaandtheirCarersinHealthandSocialCare.NationalInstituteforHealthandClinicalExcellence

NationalInstituteforHealthandClinicalExcellence(NICE)(2004):ImprovingSupportiveandPalliativeCareforPatientswithCancerNationalInstituteforHealthandClinicalExcellence,London

114



NationalInstituteforHealthandClinicalExcellence(NICE)(2005):ImprovingtheOutcomesforChildrenandYoungPeoplewithCancer

NationalInstituteforHealthandClinicalExcellence(NICE)(2006):Parkinson’sDisease–DiagnosisandManagementinPrimaryandSecondaryCareNationalInstituteforHealthandClinicalExcellence,London

NationalInstituteforHealthResearch(2007)ResearchSummary:Careprovidedbygeneralistsattheendoflife:scopingexerciseonresearchpriorities:www.sdo.lshtm.ac.uk;

NationalInstitutesofHealthState-of-the–ScienceConferenceStatementonImprovingEndofLifeCare(2004)http://consensus.nih.gov/2004/2004End OfLifeCAreSOS024html.htm

NHSModernisationAgency(2004)CoronaryHeartDiseaseCollaborative-SupportiveandPalliativecareforadvancedheartfailure.NHSModernisationAgency,Leicester

NHSUniversityofNottingham(2008)AdvanceCarePlanning–AGuideforNHSStaff.

NolanM.T,andMock.V.(2004)Integrityoftheperson.Aconceptualframeworkforendoflifecare.JournalofProfessionalNursing,20,351-360NorthernIrelandCancerNetwork(2008)DiagnosingDying–DefiningEndofLifeCare;SupportiveandPalliativeCareNetworkGroup

NorthernIrelandCancerNetwork(2008),AFrameworkforGeneralistandSpecialistPalliativeandEndofLifeCareCompetency,SupportiveandPalliativeCareNetwork,MultidisciplinaryEducationWorkStrand.www.cancerni.net/publications educationframeworkforgeneralistspecialistpalliativecare

NorthernIrelandHospiceCare(2007)ExtendingpalliativecareeducationtonursinghomestaffacrosstheEasternHealthSocialServicesBoardarea.NorthernIrelandHospice.Belfast


115



PreferredPrioritiesforCare.Availableonline:http://www.endoflifecare foradults.nhs.uk/eolc/CS310.htm.[accessed16thNovember2009]

Queen’sNursingInstitute(2009):2020Vision–FocusingontheFutureofDistrictNursing.Queen’sNursingInstitute.London

Rasmussen.B.H.,Jansson,L&Norberg,A(2000)Strivingforbecomingathomeinthemidstofdying.AmericanJournalofHospiceandPalliativeCare17(1),31-43.

Relatives’AssociationNI(undated):WheretoTurn–Informationguideforlovedonesgoingintoacarehome

ReformandModernisationofPalliativeCare–DevelopingaRegionalModelforPalliativeCare;(2008)UniversityofUlster

Ross.M.M.,Fisher.R.,Maclean.M.J.(2000)EndofLifecareforseniors:thedevelopmentofanationalguide.JournalofPalliativeCare;16(4):47-53

RoyalCollegeofPhysicians(2009)ConciseGuidancetoGoodPracticeNumber12,Advancecareplanning,NationalGuidelinesRoyalCollegeofPhysicians.RoyalCollegeofPhysicians.London

Scanlan,J.C.(2001)Pharmaceuticalinformationexchangebetweenprimaryandsecondaryhealthcareprofessionalsandcancerpatients.TheInternationalJournalofPharmacyPractice9,R18

ScottishCommissionfortheRegulationofCare(2009)BetterCareEveryStepoftheWay–Palliativecareincarehomes.CareCommission.Dundee

ScottishGovernment(2008):LivingandDyingWell–ANationalActionPlanforEndofLifeCareinScotland;ScottishGovernment,Availableonline:http://www.scotland.gov.uk/Publications/2008/10/01091608/0[accessed16thNovember2009]

116



ScottishPartnershipforPalliativeCare(2007):PalliativeandEndofLifeCareinScotland–thecaseforacohesiveapproach

SealeCetal(1997)AwarenessofDying:prevalence,causesandconsequences.SocialScienceandMedicine.August45,33,477-84

SingerPA,MartinDK,KelnerM(1999).QualityofLifecare:patient’sperspectives.JAMA281:163-168

Society&CollegeofRadiographers(2009).EndoflifeCareStrategy.http://doc-lib.sor.org

Street.A.F.,&Kissanne,D.W.(2001)ConstructionsofDignityinEndofLifeCare.JournalofPalliativeCare17(2)93-101

Stevens,T.,Payne,S.A.,Burton,C.,Addington-Hall,J.andJones,A.(2007)Palliativecareinstroke:acriticalreviewoftheliterature.PalliativeMedicine,21:323-331

Storey,L,Pemberton,C.,Howard,A&O’Donnell.L.(2003)PlaceofDeath:Hobson’sChoiceorpatientchoice?CancerNursingPractice2(4)33-38

TheCharteredSocietyofPhysiotherapy(2002).TheeffectivenessofphysiotherapyinthepalliativecareofolderpeopleEB04(April2002)

TheNHSConfederation(2005)Improvingend-of-lifecare.BriefingpaperIssue12.November2005

Thomas,K(2003)CaringfortheDyingatHomeRadcliffeMedicalPress,Oxon

Townsend.J.etal(1990)PreferenceforPlaceofDeath:AProspectiveStudy.BritishMedicalJournal,301,(6749)415-17

UniversityofUlster/NorthernIrelandCancerNetwork(2008):ReformandModernisationofPalliativeCare–DevelopingaRegionalModelforPalliativeCare;UniversityofUlster,Jordanstown.


117



Vohra,J.U.,Brazil,K.,Hanna,S.,&Abelson,J.(2004)FamilyPerceptionsofEndofLifeCareinlong–termcarefacilities.JournalofPalliativeCare,20(4),297-302.

WorldHealthOrganisation(2004)TheSolidFacts:PalliativeCare.Geneva:WHO

WorldHealthOrganisation(2002)TheWorldHealthReport2002.Geneva:WHO.

WorldHealthOrganisation,DefinitionofPalliativeCare.Availableonlinewww.who.int/cancer/palliative/definition;[accessed16thNovember2009]

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