The Palliative Care Re-imagined Series by compassionate-communities

The Palliative Care Re-Imagined Series by Dr Julian Abel, Professor Allan Kellehear & friends

Palliative curriculum re-imagined: a critical evaluation of the UK palliative medicine syllabus

Palliative care the new essentials

Contents

Access to palliative care reimagined

Palliative care re-imagined: a needed shift

Advance care planning re-imagined: a needed shift for COVID times and beyond

Tocite: AbelJ,KellehearA.

JulianAbel,1 AllanKellehear2

Palliativecare,sincetheformationofSt Christopher ’sHospicein1967hasset thestandardofhowtocareforpeople whoaredying.Keyfeaturesamongthese standardshavebeentheprofessional developmentofclinicalspecialismssuch aspalliativemedicineandpalliative nursing;theessentialadditionofthe multidisciplinaryteamtothesetwonew specialismsthatincludedsocial,spiritual andalliedhealthworkers anoutgrowth oftherecognitionthatroutineworkwith thedying,theircarersandthebereaved requiredmorethansolelyclinicalskills;

1.Thehomedeathrate,over30%inthe 1980sinBritain,hasremainedlow,with ratesbeingnear20%.TheNational End-of-LifeCareStrategywaspublishedin theUKin2008withthespecificpurpose ofresolvingsomeoftheseproblems. Despitetheenormouseffortthathastaken place,theincreaseinhomedeathratesis disappointinglymodest,being22.6%in 2014 1

Palliativecarereimagined:aneeded

Revised18December2015

BMJSupportive&Palliative Care 2016;6:21 26.

Correspondenceto

31January2016

PublishedOnlineFirst

3.Availabilityofprofessionalcaringservices inthehometolookafterpeoplewithterminalillnessesisdiminishing.In2014,9 of10localauthoritiesreportedthatthey werelimitingsocialcarepackagestothose peoplewhoareincrisis.3 Budgetsfor socialserviceshavebeenreducedbyas muchas40%.Someoftheimprovements copyright.

2.Bothprimaryandsecondarycarestruggle toidentifypeoplewhoareatthelast phaseoftheirlifeandconsequentlythere islimiteduptakeofadvancecareplanning. Reportingdatafromelectronicpalliative carecoordinationsystemsshowthat peoplewithnon-cancerdiagnoseshave hospitaldeathratesofbetween10and 20%whenofferedadvancecareplanning, withtheirchoicesareavailabletothe broaderhealthcommunityelectronically.2 Theimplicationisthatwithgreateruptake oftheprinciplesofend-of-lifecare,the greatertheimpactonqualityofcareand placeofdeath.

ABSTRACT

shift

Editor ’schoice Scantoaccessmore freecontent Feature AbelJ,KellehearA. BMJSupportive&PalliativeCare 2016;6:21 26.doi:10.1136/bmjspcare-2015-001009 21

Whilemostpeoplewillagreethatthese developmentshavebeenoutstanding,yet somelong-termproblemsremainwhile otherrecentnationaldevelopments threatenearlyachievements.Amongthese currentchallengesarethefollowing:

Received21August2015

1DepartmentofPalliativeCare, WestonAreaHealthTrust, WestonsuperMare,UK

DrJulianAbel,Departmentof PalliativeCare,WestonArea HealthTrust,WestonArea HealthTrust,GrangeRd,Weston superMare,BS234TQ,UK; julian.abel@nhs.net

Accepted10January2016

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Palliativecare,sinceitsinceptionover60years ago,hassetthestandardofhowtocarefor peoplewhoaredying.Keyfeaturesamongthese standardshavebeentheprofessional developmentofclinicalspecialismssuchas palliativemedicineandpalliativenursing;the essentialadditionofthemultidisciplinaryteamto thesetwonewspecialismsthatincludedsocial, spiritualandalliedhealthworkers an outgrowthoftherecognitionthatroutinework withthedying,theircarers,andthebereaved requiredmorethansolelyclinicalskills;andthe uniquepartnershipwithcommunitiesthat yieldedthevolunteermovementwithinpalliative care.Professional,evidence-basedsymptom managementandtheimportanceofsupportive careinitswidestpossiblesensewereandremain thecornerstonesofthemodernpalliativecare approach.However,themajorityofpeoplewith terminalillnessesdonothaveaccesstopalliative careteams,whosemainfocusofcareremains patientswithcancer.Inthecontextoutlined abovethispaperthereforeposestwokey questions:howcanweprovideanequitablelevel ofcareforallpeopleirrespectiveofdiagnosis andhowcanweincreasetherangeandquality ofnon-medical/nursingsupportivecareina contextofdiminishingresources?Wearguethat animportantopportunityandsolutioncanbe foundbyadoptingtheprinciplesofapublic healthapproachtoend-of-lifecare.

2DepartmentofEndofLifeCare, UniversityofBradford,Bradford, UK

andtheuniquepartnershipwithcommunitiesthatyieldedthevolunteermovementwithinpalliativecare.Professional, evidence-basedsymptommanagement andtheimportanceofsupportivecarein itswidestpossiblesensewereandremain thecornerstonesofthemodernpalliative careapproach.

Caringforpeoplewhoareageinganddying,supportingcarers,andgivingsupporttothosewhoare sufferinglossandbereavement,hasbeenpartof humansocialevolution.Forthemajorityofthe world,deathremainsacommunityconcern.Hands oncareisperformedbypeopleinthecommunity sometimesinpartnershipwithprofessionalcarers. Supportforthecarersandthebereavedtooisperformedbythewholecommunityratherthanisolated individuals.Poorernationswithlimitedaccessto 26.doi:10.1136/bmjspcare-2015-001009 copyright.

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Theaimofawell-roundedpublichealthstrategythen istorecognisethenecessarylimitstogovernment/ serviceprovision.Inthiscontext,wethen:(1) promotecommunitydevelopmentandengagement, workingtofillthesupportspacesoutsideepisodesof professionalcareand;(2)developthosespacesand timesoutsideserviceprovisionaskeyfertileground fortheplanning,developmentanduptakeofour effortsinearlyintervention.Thisapproachtocommunityparticipationservestopromoteandnurture thesocialcapital(trust,empathyandcooperation)in everycommunityintheserviceofprevention,harmreductionandearlyinterventionforillnessesand otherharmsbutalsomorepositively,healthpromotion,educationandwell-being.

Feature 22 AbelJ,KellehearA. BMJSupportive&PalliativeCare 2016;6:21

Insummary,allsuccessfulnationalpublichealth programmesinvolveaneducationalcomponent, acommunityeffort,andagovernment/servicesrole.

4.Specialistpalliativecare,byandlarge,remainsfirmlyfor patientswithcancer.Thisisparticularlythecaseoutside ofhospitalcare.Thechallengeofhowtoprovidespecialistpalliativecareprinciplesforallpatientswithout cancerremainsunanswered.Thedemographicandepidemiologicalchallengesthatloomlargeforpalliative careremaintheolderpopulationwithmultiplemorbidities,peopleinremoteandruralareas,thedisabled, imprisoned,thoseinnursingandcarehomes,andthe homeless.Continuityofcareremainsaseriouschallenge andwithdiminishingsocialcareresourcesthisproblem willonlybecomegreater.Palliativecareisnotonlyabout maximisingsupportfordyingpatientsandtheirfamilies andalsothebereaved.Identifyinganddeployingsocial careresourcesforsupportoutsideepisodesofmedical andnursingcareandbeyondthedeathofthepatient (forsupportofthebereaved)hasalwaysbeenadifficult askbutinthecurrentcontextofshrinkingbudgetswill nowalsobeanimpossibleone.

APUBLICHEALTHAPPROACHTOEND-OF-LIFE CARE

wehaveseenintrendsforplaceofdeatharelevelling outandinsomeplacesworsening.

WHATISPUBLICHEALTH

Inthecontextoutlinedabovethispapertherefore posestwokeyquestions:howcanweprovidean equitablelevelofcareforallpeopleirrespectiveof diagnosisandhowcanweincreasetherangeand qualityofnon-medical/nursingsupportivecareina contextofdiminishingresources?Wearguethatan importantopportunityandsolutioncanbefoundby adoptingtheprinciplesofapublichealthapproachto end-of-lifecare.

Astarkrealityforend-of-lifecarehasbeenthelackof equitableprovisionofspecialistpalliativecareto peoplewhohaveterminalillnessesotherthancancer. SincethepublicationoftheNationalEnd-of-Life Strategyin2008,withtheformationoftheNational End-of-LifeCareProgrammeledbyProfessorSir MikeRichards,extensiveinvestmentandinitiatives havetakenplaceacrosstheUKtoimproveend-of-life careinallsettings.Whiletherehavebeenmany improvements,thewidespreadapplicationanduptake ofadvancecareplanninghasbeensporadic.Changes inhomedeathrateshavebeenverymodestinthe lightofthissustainedeffort.Hospitaldeathratesfor non-cancerterminaldiagnosesremainhigh,with averagehospitalcancerdeathratesbeing37.82%and non-cancerdiagnosesbetween48and63%depending onthecondition.4 Giventhecurrentdemandson professionalandsocialcare,thereislittlerealistic prospectofmeetinganincreaseddemandusingprofessionalservicesshouldmorepeoplebeoffered advancecareplanningandchooseahomedeath. Weproposeanewwayofrestructuringpalliativecare sothatallpeoplecanbecaredfor,usingaunified co-operativeapproachofprofessionalsandcommunitiesworkingtogether.Wearguethatnotonlyisthisa practicalwayofsolvingwhatappearstobeunaffordablefinancialdemands,itisactuallypreferablein termsofqualityandcontinuityofcareexperiencefor allconcerned.

Atthecoreofallofourhistoricalpublichealth effortsinallthemajorhealthandmedicalfieldsisa blendedapproachof ‘top-down’ effortssuchasdirect serviceprovision,legislativechangesandhealthsurveillancecombinedwith ‘bottom-up’ effortssuchas localcommunityparticipationandactions,andthe promotionofindividualresponsibility.Althoughall publichealthtraditions bothimposedandparticipatory havebeenattheheartofallmajoreffortsat preventionandharm-reduction,ithasbeenthelocal communityparticipationandaction,andpromoting individualresponsibilityapproaches,thathavebeen crucialtoincreasingaccessandquality,ensuring success,andguaranteeingthesustainabilityofmost publichealthprogrammes.Moreover,ithasbeenthe bottomupapproachesinpublichealth(akahealth promotionandcommunitydevelopment)thathave providedalternativestodirectservicesprovisionby exploitingthesocialassets(localsocial,financial, practicalsupports)ofacommunitywhileensuring continuityofcarethatpaidserviceprovisionsimply cannotprovidewithoutinconceivableinjectionsof governmentorprivatefunding.

PRACTICALAPPLICATIONOFPUBLICHEALTH APPROACHES

1.Creationofcompassionatepolicies.Thisisawayan institution(eg,aworkplaceoraschool)canofficially givepermission,helpandsupportthosepeoplewith terminalillnesses,carersorpeoplewhohaveexperiencedgriefandbereavement.RecentlytheBBCinterviewedthebrotherofaworkerk illedinanexplosion atwork.Thecompanyoftheworkerhadnot approachedthefamilybeforetheTVcrewsandhe expressedbitternessattheirslowness.10 Thisisfertile groundforpoorbe reavementoutcomesandalawsuit. Ifthecompanyhadapolicyaboutwhattodointhese kindsofsituationthesevolatilepotentialitiescouldbe avoided.

Feature AbelJ,KellehearA. BMJSupportive&PalliativeCare 2016;6:21 26.doi:10.1136/bmjspcare-2015-001009 23

Therehasbeenincreasinginterestinpublichealth approachestoend-of-lifecaresincethemid-1990s, followingthedevelopmentoftheprinciplesof ‘health promotingpalliativecare’ byoneoftheauthors (AK).5 7Theconciseprinciplesofthisapproachcan befoundinthecompassionatecitycharter.8

CompassionateCitiesarecommunitiesthatpublicly encourage,facilitate,supportsandcelebratescarefor oneanotherduringlife’smosttestingmomentsand experiences,especiallythosepertainingtolifethreateningandlife-limitingillness,chronicdisability, frailageinganddementia,griefandbereavement,and thetrialsandburdensoflongtermcare.Thoughlocal governmentstrivestomaintainandstrengthenquality servicesforthemostfragileandvulnerableinour midst,thosepersonsarenotthelimitsofourexperienceoffragilityandvulnerability.Seriouspersonal crisesofillness,dying,deathandlossmayvisitanyus, atanytimeduringthenormalcourseourlives.Acompassionatecityisacommunitythatsquarelyrecognises andaddressesthissocialfact.

Compassionatecommunitiescanbebuiltwherever therearepeople,andthatisalmosteverywhere. Initiativescantakeplaceinschools,workplaces,trade unionmovements,hospices,carehomes,neighbourhoodsandhighstreets,socialmediaandeducational institutions.Thiscanbesupportedbypoliciesfrom local,regionalandnationalgovernmentandencouragedinavarietyofways,includingpublicrecognition oftherealityoftheexperiencesofdeath,dyingand lossthroughexhibitions,prizesandannualpublic ceremoniessuchasparades.Thecompassionatecity charterissomethingofachecklistofthedifferent areasthatcanbeaddressed.Theprinciplesofpublic healthapproachescanbeappliedtheworldoverand manyexamplesofthiswerepresentedattherecent 4thPublicHealthPalliativeCareConferencein Bristolin2015andintherecenteditedvolumeby Wegleitner etal9 Solutionsabouthowtolookafter peopleatendoflife,theircarersandthebereavedare developedlocallyandworkedoutatgroundlevelby thepeoplewhoareinvolved.

▸ Networkdevelopment.Naturallyoccurringsupportive networkssurroundbothpatientsandcarers.Therearea varietyofexamplesofhownetworkscanbestimulated, organisedanddeveloped.Forexample,averycommon experienceisthatwhensupportisoffered,particularly duringtheearlystagesofanillness,thisisturneddown. Bothpatientsandtheircarersdonotwanttobea burdentothosearoundthem.Asoffersofhelpare turnedaway,peoplebecomeincreasinglyisolated.This becomesmoreproblematicaspeoplebecomelesswell, whenmoresupportisneeded.Averysimpleprincipleof networkdevelopmentistoalwaysjustsayyeswhenever helpisoffered.Thishelpsnetworkstobecomeactivated anddevelopedattheearlystagesofanillness.Networks canalsobedevelopeddirectlybyaskingandorganising. Thisisaskillthattakestimetolearnbutcanbesupportedandtaught,usingwellestablishedprinciplesof communitydevelopment.

besupportedbythepeoplewhoareclosesttothem. Thereareavarietyofwaysofdoingthis.Thefollowingaretypicalillustrations:

healthcareserviceshavelittlechoiceotherthan makingdeathacommunitymatter.

Creationofsupportivepolicieswithininstitutions. Institutionsencompassawidevarietyofdifferent organisations.Thiswillincludeeducationalinstitutions,workplaces,tradeunions,schoolsandreligious organisationstonamebutafew.Withinaninstitution, awayofthinkingaboutcapacitybuildingistoconsiderthreedifferentaspects.

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Acentralissueforpublichealthapproachesto end-of-lifecareishowwecanmakethemostoutof communityassetsandcapacity,enablingthedyingto

CompassionateCitiesarecommunitiesthatrecognise thatallnaturalcyclesofsicknessandhealth,birthand death,andloveandlossoccureverydaywithinthe orbitsofitsinstitutionsandregularactivities.Acompassionatecityisacommunitythatrecognisesthat careforoneanotherattimesofcrisisandlossisnot simplyatasksolelyforhealthandsocialservicesbutis everyone ’sresponsibility.

▸ Developmentofsupportivecommunitiesofvolunteers. Befriendingschemescanbesupportiveinawidevariety ofdifferentways.Thismightbesupportgiventocarers inthedailytasksthatareneededtorunahousehold, suchascooking,cleaning,shoppingorcaringforpets. Itmightbeemotionalsupportforacarerbyofferinga listeningear,orevenmakinglifenormalbydoingthe normalthingssuchasgoingoutforameal,seeafilmor goforadrink.Itcanalsobeofferingdirectsupportto thepersonwiththeillness.Thereisatendencytothink thathandsoncareisthedomainofprofessionals. However,theirrealityofoftenverydifferentwiththe majorityofhandsoncarebeingdonenotbythemain carerbutbythoseintheinnernetworkofclosefamily andfriends.Directsupportcanalsoinvolvetaskssuchas lifts,spendingtimewithsomeoneorgivingacarersome respite.

▸ Implementationofthecompassionatecitycharter (8). Deathanddyingiseveryone’sbusiness.Ittakesavillage toraiseachildandittakesacommunitytosupport death,dyingandbereavement.Involvingeveryone, :21 26.doi:10.1136/bmjspcare-2015-001009 copyright.

Ascanbeimagined,workingorstudyinginan environmentthathasaplaceforsuchkindnessaddsa lottothequalityofexperienceforallthoseinvolved. Itisnotuncommontohearsomeonesay “yes,Idid knowthatmycolleague’sfatherhaddiedbutIdidn’t knowwhattosay,soIsaidnothing”.Beinginaplace wherehelpandsupportisofferedisverydifferent.

HOWPALLIATIVECARECANBEREFRAMEDTO INCLUDEEVERYONEIRRESPECTIVEOF DIAGNOSIS.

ArecentreportfromtheUniversityofWestern Sydney11 describedthetypeofnetworksandquality ofrelationshipssurroundingpeoplewhodiedat home.Thereportexaminesindetailhowprofessional servicesstruggletointeractwiththesenonprofessionalnetworks.Webelievethatnetworkdevelopmentandcommunitycapacitybuildingoffersaway towideningtheaccesstopalliativecareandincreasing thesupportgiventopeopleatendoflife.

Thinkingaboutreframingpalliativecarecanbe aidedbyaskingtwofurtherquestions.First,what workcurrentlycarriedoutbyprofessionalscouldbe performedbycommunities?Thisisachallenging questionbecauseprofessionalsfindsomuchmeaning andvalueinwhattheydo.Thinkingthattheymay notbethebestpersontohelpcancauseanxietyabout theirroleandplace.Second,ifthecommunityserved bytheprofessionalwasa3hourjourneytotheir closestservice,whatsolutionswouldtheprofessional comeupwithtoprovidecare?Aconcernformany professionalsisthatthequalityofcarediminishes whenperformedbynon-professionals.Thisisnotour experienceandiftrainingisneeded,itcanbeorganised.Furtherstudieswillbeneededtoassessthe impactoftheuseofnon-professionalsoncarequality.

▸ Psychologicalandsocialcare.Thesemightinclude advancecareplanning,organisedneighbourhoodassistanceandbereavementsupport.Peoplewhohavebeen throughtheexperienceofbeingacarercanoffersignificantsupportandbenefittothosegoingthroughthe same,byhelpingthemnavigatetheirwaythroughthe varietyofexpectedproblems.Forcarerorpatient, knowingthatsomeoneelseunderstandsbecausethey havebeenacarerthemselvesmakestalkingmucheasier. Italsoassistsintheremovalofsomeofthepatient professionalbarriers.Thereareavarietyofmodelsforthis, withtermssuchas ‘compassionateneighbours’ or ‘ communitycompanions’ oftenused.Wehavefoundthat boththepeoplewhoaregivensupportandthevolunteersthemselvessaythattherelationshipsformedoffer supportandbenefitinawaythatcannotbegivenby professionals.Acentralfocusthatseemstohelppeople istoknowthattheexperiencesthattheyareundergoing arenormalhumanonesThiscommonalityofexperience helpstolessentheextremeemotionswingsofwhat appearsasfrightening,difficultormysteriousevents.

Feature 24 AbelJ,KellehearA. BMJSupportive&PalliativeCare 2016;6

Findinganswerstothesetwoquestionshelpsto identifyhowwecanmakebestuseofthelimitedprofessionalresourcesofformalandprofessionally-led palliativecare.Ifwecandothis,westandachanceof reconfiguringservicestomeettheneedsofall.

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▸ Redefiningtheroleofspecialistpalliativecarenurses. Someoftheirworkdoesnotrequirespecialistinput. Thereareawidevarietyofthesetaskswhichcanbe carriedoutbynon-specialistorvolunteer.Forexample, arrangingprescriptionandcollectionofmedicationvia generalpracticesurgeriescanbeverytimeconsuming. Likewisemakingsurejustincasemedicationsatendof lifeareinthehousecandeterminewhetherthedying personisabletostayathomeorbeadmittedtohospital asanemergency.Anothercauseofsignificantanxiety andsufferingforpatientsandrelativesisthedelayin administrationofsymptomrelievinginjectionswhile waitingforahealthprofessionaltoattendthehouse. Interestingly,theNationalSurveyofBereavedPeople (Voices)12 highlightsthatpainandothersymptom controlathomeisnotasgoodasininstitutions.Itis commonforpeopletowaitanumberofhoursfora healthprofessionaltovisit.Asimplesolutionforsome peopleistotrainrelativestodeliversubcutaneousmedication.Thisisasolutionthatisfoundallovertheworld andprotocolswhichinvolverelativesandpharmacists arewellestablished.Itishowevernotcommonpractice, particularlyintheUK

2.Askingforvolunteersforpeoplewithintheinstitutionto actasemotionalsupportandtobealisteningear.This maybepeoplewhohaveanaturalaffinityfordoingthis ormaybepeoplewhohaveundergonetheexperienceof losswhichmaybeofhelptoothers.Theseareinternal processesthatnotonlyimprovequalityoflifeforall workers asdoantisexualharassmentorantibullying policies theyalsoenhancecompanyandworkplace loyaltyandsupport.

De-professionalisationofcarecanbethoughtaboutin thefollowingareas

3.Havingavolunteer ‘bank’ ofpeoplewhoareprepared todotasks,suchasgivinglifts,coveringcolleaguesat work,collectingchildrenfromschool.Thewholeworkforce,schoolortemplecanparticipateaslittleoras muchastheywouldwant.Thisapproachtakesvolunteeringawayfromrecreationalorpalliativecaresitesand situatesthesehabitsintotheveryfabricofeveryday biographythroughoutthelifecourse.

▸ Physicalcare.Handsoncare,suchascleaning,washing anddressingisseenasaprofessionalissuewhenthe caringnetworkisstretched.Thereareothersolutionsto providinghandsoncare,whichincludetrainingand enablingthecaringnetwork,findinganincreased networkofpeoplewhoarewillingtodothisandbysupportingcommunitygroupsofvolunteerswhocan providehandsoncare.

REFERENCES

Hospicesareideallyplacedtoleadthechangeinhow tosupportpeopleatendoflife,buttheyarenotexclusivelyso.Hospicesareaccustomedtoworkingwith volunteers.Theyworkinpeople’shomesatendoflife andoftenworkasaprimarysourceofcommunication forcoordinatedend-of-lifecare.Themodelwehave proposedemploysteamsofnaturallyoccurringsupportivenetworksenhancedbymakingbestuseoffamilies, friends,neighbours,localgovernmentandbusinesses, aswellascommunitymembersandsupportedby healthandsocialcareprofessionalslookingafterpeople intheircommunities.Wedowelltorememberthat death,dying,caregivingandlossaresocialproblems withmedicalaspectstothemandnotmedicalproblems withsocialaspects.Viewedinthisway,itiscrucialthat weseeksocialsolutionstomaketheexperienceas meaningfulandsupportiveaspossible.

1IQN.ArchivedcontentNationalEndofLifeCareProgramme, 2014(cited5May2015).http://webarchive.nationalarchives. gov.uk/20130718121128/http:/endoflifecare.nhs.uk

5KellehearA.Health-promotingpalliativecare:developinga socialmodelforpractice. Mortality 1999;4:75 82.

intermsofengagementandingivinghelp,isarich resourceforfindingvolunteerswhoarewillingto providepracticalsupport.Itisimportanttoraisethebar oncommunityinvolvementandthecharterencourages localgovernmenttoplayanactiveroleaschangeagent inthepolicydevelopmentofschools,workplaces,commercialdistrictsorchurches/templesunderitsjurisdictionaswellasprovidingawardsandfestivalsof recognitionoftheimportanceofsupportivecarein toughpersonaltimes.

Feature

4EOLProfiles:CauseandPlaceofDeath CCG[Internet]. (cited18December2015).http://www. endoflifecare-intelligence.org.uk/profiles/CCGs/Place_and_ Cause_of_Death/atlas.html

6HaraldsdottirE,ClarkP,MurraySA.SERVICE IMPROVEMENT-Health-promotingpalliativecarearrivesin Scotland. EurJPalliatCare 2010;17:130.

AbelJ,KellehearA. 2016;6:21 26.doi:10.1136/bmjspcare-2015-001009 copyright. fromDownloaded2016.January31on10.1136/bmjspcare-2015-001009aspublishedfirstCare:PalliatSupportBMJhttp://spcare.bmj.com/byProtectedguest.by202231,Auguston

BMJSupportive&PalliativeCare

Provenanceandpeerreview Notcommissioned;externally peerreviewed.

Ourproposedmodelofcareisonewherepalliative careandcommunitysupportworktogetherinpartnership.Muchoftheworkcurrentlycarriedoutby palliativecareprofessionalscanbeperformedby workingwithcommunitiesandvolunteers.Our experienceisthatwhenthishappens,theexperiences aremoremeaningfultobothcaregiversandpatients alike.Decreasingthecurrentworkloadofpalliative careprofessionalsofferstheopportunityforservice redesign.Identificationofpeoplewithlife-limiting illnessiseasierforprofessionalswhentheyknowthat thereissomethingextrathatcanbedonetoimprove thequalityoftheirremaininglife.Averysuccessful exampleofthiscanbefoundintheprojectdeveloped andrunbyPaulCroninatSevernHospice,13 where GPsurgerieswereabletoidentifywitheasetheir35 mostvulnerable,frailpatients.Thisisalreadynearly halfofthepeoplewhoarelikelytodiewithinayear foranaverageGPpracticesizeof10000patients.

ANEWMODELOFCARE

2QualityNI.EconomicEvaluationoftheElectronicPalliative CareCoordinationSystem(EPaCCS)EarlyImplementerSites NHSIQ2013(cited5August2015).NHSIQReport].http:// www.england.nhs.uk/wp-content/uploads/2013/05/ economic-eval-epaccs.pdf

Thefocusofspecialistpalliativecareonmainlypatients withcancercanbeseenaspartofthecontinuous developmentofpalliativecareservices.Webelievethat maintainingthispositionisaninequityandanhistoricalanachronism.Thecurrentrealityisthatpeople needsupportirrespectiveofdiagnosisandtheinequity wenowseeinpalliativecareisafundamentalmatter ofsocialjustice.Furthermore,theconfinementofour attentionstomedicalandnursingworkforcedemands withinpalliativecareisamajorretreatfromthebasic visionofpalliativecareasapromiseofphysical,

9WegleitnerK,HeimerlK,KellehearA. Compassionate communities:casestudiesfromBritainandEurope.Routledge, 2015.

psychological,socialandspiritualcaredeliveryatthe endoflife.Moreover,thisnarrowingofprioritiesisat thesametimeafailureofourcapacitytousepublic healthmodels,modelsthathaveproventobeeffective inotherhealthserviceareas14 aswellasend-of-life care, 15 toshoreupthedeficitsinourtraditionalways ofofferingsocialsupportattheendoflife.

3AJ.9outof10councilsforcedtocutsocialcareaccess localgovernmentexecutive.co.uk2014(cited6August2015). http://www.localgovernmentexecutive.co.uk/news/ 9-out-10-councils-forced-cut-social-care-access

8KellehearA,WegleitnerK,HeimerlK. Thecompassionatecity charterINcompassionatecommunities:casestudiesfrom BritainandEurope.Abingdon,UK:Routledge,2015.

Freeingupworkforcethengivesthepossibilityof extendingservicestoallpeoplewhohaveterminalillnessesirrespectiveofdiagnosis.Weenvisageteamsof carers,families,friends,neighboursandvolunteers workingdirectlyinlocalitieswithpalliativecare nursestoprovidesupportinmultiplewaysforthelast phasesoflife.Healthandsocialcareprofessionalsare alsopartofthisteam.Thefreeingofresourcesmeans thatthemostvulnerableandthosemostatneedcan usethelimitedavailabilityofprofessionalcaringservices.Itisuncertainastothescaleoftheimpactsof usingthevarietyofpracticalexamplesofapublic healthapproachandevaluationandresearchwillbe animportantfacetofanyservicechanges.

SUMMARY

Contributors DrAbelandProfessorKelleheararejointauthors. Competinginterests Nonedeclared.

7PaulS,SallnowL.Publichealthapproachestoend-of-lifecare intheUK:anonlinesurveyofpalliativecareservices. BMJ SupportPalliatCare 2013;3:196 9.

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13KlausWegleitnerKH,KellehearA.Compassionate communities:casestudiesfromBritainandEurope.UK2015 06/07/2015.222p.

11HorsfallD,YardleyA,LeonardR, etal.EndofLifeathome Co-creatinganecologyofcare.Australia:UniversityofWestern Sydney,2015May2015.ReportNo.

12StatisticsOoN.NationalSurveyofBereavedPeople (VOICES)byNHSAreaTeam(England),2012to2013. OfficeforNationalStatistics.26March2015. ReportNo.

10NewsB.BosleyMillexplosion: ‘Disastaerwaitingtohappen’ BBCnews.2015.

AbelJ,KellehearA. BMJSupportive&PalliativeCare 2016;6:21 26.doi:10.1136/bmjspcare-2015-001009

15SallnowL,RichardsonH,MurraySA, etal.Theimpactofa newpublichealthapproachtoend-of-lifecare:asystematic review. PalliatMed 2015.

Feature 26

14O’Mara-EvesA,BruntonG,McDaidG, etal.Community engagementtoreduceinequalitiesinhealth:asystematicreview, meta-analysisandeconomicanalysis. PublicHealthRes 2013;1.

View this article at: http://dx.doi.org/10.21037/apm.2018.03.04

Julian Abel, Allan Kellehear, Aliki Karapliagou

Contributions: (I) Conception and design: All authors; (II) Administrative support: None; (III) Provision of study materials or patients: None; (IV) Collection and assembly of data: None; (V) Data analysis and interpretation: None; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

DHEZ Academic, University of Bradford, Bradford, UK

Methods: We describe how four essential elements within a public health model can work together to address quality and continuity of care as well as addressing the numerous barriers of access. These elements are: (I) specialist, and (II) generalist palliative care services working with (III) communities and neighbourhoods, working in their turn with their (IV) key civic institutions.

The first part of this paper describes the four components of the proposed model in order to define the core terms of reference for this discussion. We will then describe how the four components should work together, in order to more effectively promote issues of importance to health and wellbeing at the end of life—not solely for the dying patient, but also for caregivers, and the bereaved. The final part of the paper makes recommendations for changes in professional service organisation and social practices, starting from changes within the organisation and operations of the core components.

Results: The positive and negative impact and advantages of each of these elements is described and discussed.

doi: 10.21037/apm.2018.03.04

Submitted Feb 27, 2018. Accepted for publication Mar 09, 2018.

Ann Palliat Med 2018;7(Suppl 2):S3-S14apm.amegroups.com

Conclusions: A solely clinical model of palliative care is inadequate to addressing the multiple comorbidities and access issues characteristic of modern palliative care. A public health approach based on a close partnership between clinical services and communities/civic institutions is the optimal practice model.

Background: If global palliative care is to successfully address challenges of unequal access, continuity of care, and health services reductionism, new practice models to address these issues need to be identified, debated and tested. This paper offers one such practice model based on a public health approach to palliative care that has so far shown promising evidence of effectiveness.

Correspondence to: Allan Kellehear. DHEZ Academic, University of Bradford, Richmond Road, Bradford, UK. Email: a.kellehear@bradford.ac.uk.

resource. The outcome of the proposed partnership is inclusive care irrespective of cause of death, and opportunities of support for the bereaved in equal measure. We argue that these four components and their collaboration will provide the new essentials that will help us reshape palliative and endof-life care.

Original PalliativeArticle care—the new essentials

Introduction

Keywords: Public health; community; civic engagement; inter-professional working; social determinants

In an earlier publication, Abel and Kellehear (1) examined the potential for reshaping palliative care services by applying the principles of the public health approach to end-of-life care. The public health model of palliative care has shown promising evidence of effectiveness (2-6). The social justice basis for this approach responds to the crucial need for equity of care irrespective of age, background, diagnosis, or cause of death. In the current paper, we propose a practical model that redesigns and reshapes services, by inviting and organising the coordination and interaction between specialist palliative care, generalist palliative care, compassionate communities, and the civic approach to end-of-life care (7). The seamless integration of these four components, which are already part of some end-of-life care systems around the world, offers the possibility of uniting professional care with community

Ann Palliat Med 2018;7(Suppl 2):S3-S14apm.amegroups.com

In generalist palliative care, routine healthcare is combined with social care to allow patients to live with their condition at home. However, even within the context of specialist palliative care, many hospice patients in inpatient units have

Although there are marked improvements in specialist palliative care provision in the UK—with more people seen in inpatient units, and a higher number of beds being available or in use—the number of non-cancer patients in specialist palliative care inpatient units is 11% (13). It has been established that non-cancer patients with terminal diseases have comparable need for specialist palliative care

Specialist palliative care

Generalist palliative care

care essentials © Annals of Palliative

Many countries recognise palliative care as a medical speciality with training programmes equivalent to other accredited specialities, or at least sub-specialities. Similarly, there are recognised training programmes for specialist palliative care nurses. Specialist palliative care can perhaps best be conceived within a spectrum of care services attending to the needs of those who do not need extensive support, as well as those who need focussed attention in a variety of care settings, at different stages in their illness. The domains of care involved are broad and inclusive of physical, social, psychological and spiritual needs. For this reason, the grey area between specialist and generalist palliative care remains, and the differentiation of the four components into neat categories proves challenging.

Generalist palliative care can be defined by exclusion—it is not a medical specialty, and involves care at the end of life that is not provided by specialist palliative care teams. This means that it includes care provided by all health and social care professionals who look after people who are dying and those who are bereaved. The issue of who provides generalist palliative care depends upon each individual country healthcare system, its organisation and regulations. In the UK, most hospital specialities look after terminally ill patients, and may be supported to a greater or lesser extent by in-hospital specialist palliative care teams. Outside the hospital setting, care is coordinated by primary care teams, consisting of general practitioners, trained nursing staff, social workers and nursing staff who give physical handson care. Professionals who provide palliative care may be supported by specialist teams for complex problems, but this is commonly restricted to cancer patients.

National health services around the world are organised differently. The key components of care entailed in the proposed model may be found to a greater or lesser extent in all national healthcare systems. The challenge for respective national palliative and end-of-life care services will be to fulfil the functions of the model we describe according to the needs of their local organisational and community structures.

similar social needs.

Palliative care components

The differentiation between specialist and generalist palliative care can be better understood if we consider the nature of severe care needs. In the case of specialist palliative care, patients require complex assessment with specialized therapeutic knowledge (as in the case of management of malignant bowel obstruction or complex neuropathic pain).

The proportion of inpatients who need palliative care is estimated at 63% (10). The proportion of inpatients who need specialist palliative care is difficult to estimate and determine. What we do know is that non-cancer patients are under-represented in specialist palliative care, although they have comparable needs to cancer patients (11). Ethnic minority community members, older people and marginal groups (i.e., homeless populations) have also been documented to escape timely referral to specialist palliative care services (12). In other words, specialist palliative care could be more readily available to people who are in receipt of generalist palliative care, while social care needs to reach people closer to death and in receipt of specialist palliative care in equal measure. By and large, in those countries that have palliative care recognised as a specialty, the care provided is for patients with complex needs and symptom control problems. Instead, there needs to be a continuum of support between specialist, generalist, community and civic end-of-life care, so that those who mostly need specialist services can readily access it.

There is no single or clear definition of specialist palliative care (8). The World Health Organisation defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’ (9). This definition comes as a subheading under ‘cancer’ and does not make a specific reference to noncancer terminal diagnoses and conditions. It also does not differentiate between specialist and generalist palliative care.

Professional services, such as specialist or generalist palliative care, give and receive support from communities to enhance their respective tasks of support for people with life-limiting illness and their caregivers. In the same way, communities or neighbourhoods require support from civic sectors to effectively undertake their responsibilities towards people with end-of-life care needs. Professional support is incomplete without community support, especially in matters to do with quality and continuity of care. In the same way, community support cannot offer continuity or quality of care without civic participation and co-operation from public sectors and institutions—schools, workplaces or churches. This is quite simply because these are the key social institutions inhabited by the very neighbours, family members, or friends offering support to the dying or the bereaved. It is, therefore, crucial to recognize that neighbourhood caregivers are not faceless social entities but rather actual employees, students, worshipers, shoppers, and club members. The civic component of end-oflife care recognizes this foundational inter-dependency as the very support basis of community care, and mobilises actions that support end-of-life care in public institutions.

Compassionate communities are naturally occurring networks of support in neighbourhoods and communities, surrounding those experiencing death, dying, caregiving, loss and bereavement. Conceptually and practically, these networks have been defined by ‘inner’ and ‘outer’ circles of care (14,15). The ‘inner’ circles of care typically consist of between 3 and 10 people who are closely related to the person with the illness. They usually provide personal (physical) care, as well as companionship, psychological and emotional support. The ‘outer’ circles of care consist of between 5 and 50 people or more, with an average number of 16 (16). The ‘outer’ circle is not focussed exclusively on the patient, while members may not necessarily know one another. The ‘outer’ circle of care helps with the ‘stuff’ of life—the shopping, the cooking, the cleaning, lifts to and from hospital appointments, gardening, dog-walking, and more. In a study of family caregiving for cancer patients, the average number of hours per week spent on these tasks was 62 (17)—a sizeable proportion of which could be shared with community members, neighbours and friends within the network.

with cancer patients, but further research is needed to identify their specific needs and types of care received in order to draw directions for their inclusion (11).

Although there are potentially numerous ways we can involve business or schools in end-of-life care, the Compassionate City Charter (7) provides a succinct and ready-made tool for embedding this approach to end-oflife care. The Charter includes action recommendations for schools, workplaces, churches and temples, trade unions, cultural centres, hospices and care homes, amongst others. Reorientation of health care towards civic partnerships, as described in the Ottawa Charter of Health Promotion (19) is a consistent part of the public health approach to endof-life care. A variety of incentive schemes to promote participation from the different social and cultural sectors, and an annual memorial parade, are all part of the actionable aspects of engaging people at the broadest community level in end-of-life care. The Charter does not define how it should be put into practice. This is something that is different in each context and depends upon who

for mental or physical health reasons, or for reasons of geography or financial barriers. Compassionate communities bring networks to people, whilst social prescribing requires people to go to the networks. Both types of movement are useful in compassionate communities, but social prescribing alone favour mainly those in better health, a resource less common in end-of-life care circumstances.

Compassionate communities

Community support for the entire network will vary depending upon the level of community activation that has taken place. For example, community volunteers may be happy to perform small practical tasks and offer companionship while existing charitable or religious institutions may offer and organise such supports. The ‘inner’ and ‘outer’ circles of care, and neighbourhood supports are the main foundation of resilient networks caring for people at home. Together they form a CompassionateCompassionateCommunity.communities may include an element of what is widely known as ‘social prescribing’ (18). However, it is important to remember that it is not primarily that activity which defines their action. Social prescribing is often a way that patient populations are connected— or reconnected—to their communities by linking their personal lives with new social activities and networks that were previously unknown to, or little used by them— book clubs, walking clubs, coffee mornings, gym classes, befriending groups, and more. These kinds of referrals work well enough for physically mobile populations, but work less well, or not at all, for those largely confined to home

Civic end-of-life care

the processes and operations of the four basic components— specialist palliative care, generalist palliative care, compassionate communities and civic end-of-life care— that make up palliative and end-of-life care. Their effective coordination aims at improved wellbeing at the end of life for every citizen affected by a life-limiting condition.

Figure 2 portrays ‘The Hierarchy of Wellbeing’ representing both the negative consequences of poor care

Palliative care—the new essentials model

The New Essentials model proposes a way of integrating

Palliative care - the new essentialsCompassionate Generalist Civic programme14 3 2 PalliativeSpecialistcare carePalliative for Compassionate City Charter Communities Figure 1 Palliative care—the new essentials. The hierarchy of well being Civic actions Poor work experience, increased social isolation, stress, lost work and school days, disenfranchised grief and caregiving Bedrock of support, engagement post bereavement, increased social contact, social cohesion & inclusion Carer exhaustion, increased comorbidities for dying patient and caregivers, emergency admissions, long term psychological trauma, long term ill health Resilient supportive networks, strengthened relationships into bereavement, increased home deaths Poor care planning, poor coordination, emergency admission to hospital, poor symptom control Every death captured, good symptom control, good bereavement care, coordinated care Poor symptom control, lack of equity, poor death outcomes, increased institution usage Good symptom control. integrated with primary care, good coordinationCompassionatecommunityactionsGeneralistpalliativecareactionsSpecialistpalliativecareactions consequencesNegative outcomesPostive Figure 2 The hierarchy of well-being.

Having understood that it is the union of all four components that sustains end-of-life care, we will make suggestions on how professional services can reshape and reorganise within the framework of a complete end-oflife care system with public health priorities. The linkage between the cogs and the mutual participation in joint initiatives is needed in order to be able to realistically provide end-of-life care and bereavement support for all, irrespective of age, background, and diagnosis.

In Figure 1, each component is represented by a cog which is united by a chain joining them all. Together, they work to drive up the benefits of the hierarchy of wellbeing at the end of life, which we describe in Figure 2 . The absence of any one of the cogs means that the promotion and reproduction of wellbeing is disrupted, and the clinical and public health effectiveness in addressing the comorbidities associated with dying, caregiving, or loss will be undermined. We will discuss the benefits of using each cog, and the risks resulting from their absence.

owns the initiative of becoming a Compassionate City, as well as how the Charter is adapted for different national circumstances. However, the principles apply across the globe. In the context of communities, the word ‘city’ is etymologically associated with its core social element— the citizen—and is taken from the Latin root word civitas, which describes shared civic responsibilities that transcend traditional tribal barriers (such as those of gender, ‘race’ or social class), a common purpose, and a sense of community.

This means that significant domains of care and support are left untapped and professional services alone cannot fill these gaps. The roles and practices of professional, community and civic care are naturally complementary and not mutually exclusive. Care in general, and palliative and end-of-life care in particular, is achieved through the mutual efforts of specialist and generalist palliative care, community care and civic end-of-life care. The palliative care—New Essentials framework proposes actions for the expansion of their collaboration, aiming to improve inclusion of specific needs, as well as citizens who find themselves marginalised in care. The remainder of this paper considers the roles and properties of each of the components, and offers recommendations for their adaptation, aiming to bridge

(generated by individual but disjointed palliative and endof-life care components), and the ideal positive outcomes (generated by individual but co-operating palliative and end-of-life care components). The left-hand side column describes the social and clinical epidemiological consequences and poor health service and social care and support. The right-hand side column describes the equivalent positive outcomes. It is important to note here, that many of the poor outcomes we commonly associate with the dying or bereavement journey—such as depression, loneliness, or ‘compassion fatigue’—overlap or are better explained as system failures in professional service or social support systems. However, without an optimal level of public health practice in end-of-life care— the New Essentials as we describe them here—it is not easy to distinguish between the pure social and psychological consequences of facing mortality and loss, on one hand, and the polluting social and psychological consequences of poor care, on the other.

The challenge in building collaborative partnerships between the four key components of palliative and endof-life care, and coordinating their respective processes is that the practice represents an innovation with multiple readjustments. Specialist and generalist palliative care, for example, have a limited range of therapeutic options, while network enhancement and linkage to community resource that would naturally expand their possibilities, is not a routine part of their therapeutic tools. Compassionate communities are struggling to access the domain of professional practice, gain acceptance and establish effective communication that will allow them to take a more active role in care. Civic engagement in end-of-life care is not fully understood yet in societies where healthcare is perceived as a professional responsibility.

their practices and promote greater inclusion in care.

Specialist palliative care recommendations

Current specialist palliative care services fulfil a variety of functions ranging from inpatient specialist palliative care beds in hospices and in hospitals, outpatient services, community visiting, advice and support in primary care and the community, and in-hospital teams for symptom control and advice. Carers’ feedback from the VOICES 2015 survey (20) clearly demonstrates the impact and benefits of high quality palliative care. In particular, for those patients who receive hospice care, the feedback about the quality of care is almost always excellent.

This can be in stark contrast to the experience of endof-life care in other settings—hospitals or communities— where specialist services may be limited (21-23). This is particularly, but not exclusively, the case in non-cancer terminal illnesses (23,24), people of lower socio-economic background and non-English speakers who tend to benefit less by specialist palliative care services in hospital settings (25). Young male cancer patients were found to benefit more from specialist palliative care referrals (23). Opportunities for advance care planning and building of supportive networks are also missed, and crises precipitate unplanned admissions to hospital—as in the case of heart failure patients that fail to receive advance care planning and specialist palliative care services early in their illness (26). The marked difference in home and hospital death rates between those with a diagnosis of cancer and those with non-cancer terminal illnesses—cancer patients are more likely to die at home (27,28) —is a consequence of lack of identification of the final phase of terminal illness, and lack of specialist palliative care in the community among the latter.The organisation of specialist palliative care services relies upon the basic principle that supportive communities can do much of what is currently being done by professional specialist teams. Outpatient care, and community specialist care form partnerships with informal care to allow terminally ill patients to spend time or die at home. A strong and resilient supportive community is better able to cope with the stresses and strains of caring for someone who is dying. Examples of how this is done come from Australia, where a networking approach to palliative care in the community has been adopted (29,30). Building strong networks means that patients can be looked after at home if members of the ‘inner’ circle of care are trained

Table 1 Recommendations for changes to specialist palliative care

Similarly, the adoption of the civic approach to endof-life care and the implementation of the Compassionate City Charter creates awareness about end-of-life care needs and provisions of support in the spaces and environments where citizens socialise, work, study and engage in various activities. Citizens who engage with the end of life and its care, and are encouraged to do so by the very social sectors and public institutions they interact with on a daily basis, are more likely to form partnerships with professional healthcare services and assist in the delivery of care in the community. The attitude of compassion and practical support that they encounter at school, work, society, club or centre of worship will be transferred to private sectors where palliative and end-of-life care can be burdensome and isolating.Resilient support networks can fulfil and enhance a variety of functions ordinarily performed by professional services. Spiritual, psychological and social care are not the exclusive domain of professionals. Meaning and value in care is equally obtained in the context of supportive communities, and the same principle applies to physical care. Once strong social networks are in place, it is possible to consider changing the roles and functions of

Generalist palliative care recommendations

Training in understanding of network mapping and network enhancement for all involved in end-of-life care, including non-clinical staff, volunteers, hospice shops, fundraising teams

Participation in starting and supporting compassionate community initiatives, including the Compassionate City Charter

Gaps in the provision of generalist palliative care are common, and occur in a variety of different ways. Every healthcare professional is responsible for attending to the needs of people with life-limiting conditions. Generalist palliative care, therefore, takes place in different settings, at hospitals, in primary care, and in the community. The complexity of generalist palliative care makes it difficult to predict and organise into concrete processes and therapeutic practices. As a result, the challenges of inclusion

Participation in the after-death audit for every patient who dies to establish whether the final phase of illness was identified early. This will be assessed by the extent to which care planning was completed, network enhancement took place, and end of life medication was available at the time of death. In addition, referral of relatives to community support bereavement networks should be offered as a matter of routine. If these steps have not taken place, then opportunities for how this could have happened need to be sought for continuous services improvement

Use of community development workers as a routine part of clinical teams

specialist palliative care services to enable the formation of partnerships with community and civic sectors and supports. Table 1 summaries our recommendations for achieving the above goals for specialist palliative care.

Reduced specialist palliative care in-patient beds as the need for them decreases with increasing care at home

Routine use of network mapping and network enhancement for all clinical staff

Changing job plans so that specialist palliative care advice and supports available in the community on a 24-hour basis through the use of video Availabilitytechnologyofasame-day or next-day visiting service of specialist palliative care nurses or doctors, if needed

Training in manual handling and administration of injections at the end of life for supportive community networks

In the UK all residents have access to primary care services. This means that GP services are notified of all deaths, including the place where death occurred. This creates the possibility of ensuring universal coverage of palliative care through review of each death. However, not all health services have primary care teams, and not everyone has access to healthcare. The key challenge in these circumstances is to build reliable health systems that provide equity of care to all who need it. Solutions to these problems are place dependent. Generic solutions often do not fit individual circumstances. Aiming for the key function of universal coverage should be an aspiration for all palliative care teams.

in caring skills, such as manual handling and medication administration. Strong ‘outer’ circles within the caring networks support those closer to the person who is dying in a variety of ways. They may take care of simple everyday tasks and provide respite and emotional support.

Emergency admissions to hospital without recognition of end-of-life care needs equally undermine the opportunity to build resilient networks and prepare for care at home. Aggressive treatments in a situation of crisis and lack of communication with healthcare professionals can lead to distressing experiences for relatives and friends, which have long-term consequences, and impact upon bereavement (32). Finally, the coordination of care can be problematic— General Practitioners express discomfort about their ability to perform palliative care adequately (22). They may miss symptoms not treatable by them or less common. When supported by specialist palliative care teams their effectiveness increases, and patients are able to benefit from palliative care support, including social care prior to an acute crisis. Inadequate care of the terminally ill impacts negatively among their bereaved caregivers. Adverse circumstances at the time of death complicate bereavement experiences and lead to longer-term poor health outcomes (33).

Generalist palliative care, like specialist palliative care, focuses largely on harm reduction as prescribed by the public health approach to end-of-life care (35). This is primarily achieved through early identification, advance care planning and prevention of admission to hospital within the framework of a multifaceted approach with good attention to symptom control. The social elements of the model reduce harm that comes from the difficulties of caring from the point of diagnosis right through to bereavement. For this purpose, and for the reasons mentioned above, generalist palliative care would benefit from effective collaboration with specialist palliative care and social care, but also from efficient communication with caring communities, equipped with knowledge and skills to support the end of life. Table 2 summarizes the recommended actions form primary care.

short-term whilst supportive networks are being built, and while health and social care mobilise their own resources. The coordination of care would require a specific initiative facilitated by a community development worker embedded within the clinical care team. Longer-term resilient network building is best started early in the patient’s journey. Although a lot of palliative care does not rely upon direct patient contact, and involves practical or psychological and social support, equipping networks with skills in caregiving and pain control should be routine for everyone identified as being at the end of life. Equally, the training needed does not have to be given by professionals, but could be community-led, by groups that have already had training and experience in caring for someone who has died.

Compassionate communities recommendations

Generalist palliative care, even more so than specialist palliative care, has limited therapeutic options to its availability, and is often called to deal with acute crisis in situations where specialist palliative care has not intervened with advance care planning. Being reliant on professional care alone means that when this care is not available, it can be quite challenging to help and support in an effective way. For example, the most difficult times for primary care teams is in an acute situation when urgent social care is needed, but is not readily available. The situation is currently compounded by budget cuts in health and social care. A collaborative approach between health and social care has been recommended as a way to deal with limited resources (34). Adopting a community and civic approach to end-of-life care adds to the suggested partnership.

Compassionate communities will first examine whether community resource, primarily within the patients’ own supportive network, can provide care at short notice. If community resource building has taken place, there may be support groups that could provide some kind of help in the

cannot be effectively addressed. The final phase of life may go unrecognised, undermining peoples’ chances to receive advance care planning for better symptom control. Characteristically, there is little concurrence among medical and nursing staff over which individual patients have palliative care needs. Concurrence is only increased with proximity to death (31). In cases where death is sudden like in heart disease, any opportunities to advance care planning may be missed, and death may result after a hospital admission, to the distress of patients and caregivers (26).

A change that would make a difference to the reorganisation of palliative care services is the development of collaborative relationships with compassionate communities. Compassionate communities rely upon the principle of civic responsibility to care for end of life needs, and their formation can be initiated by healthcare services or community and charitable organisations alike. Supportive networks formed within the framework of compassionate communities may contain anywhere between 10 and 100 people, depending upon the method of network mapping employed. This is an enormous community resource that makes a difference between a successful, resilient network that can look after someone throughout the course of their illness, and that of a weak network that results in a hospital admission during a crisis.

A community development programme initiated by healthcare services themselves can add value and enhance available resources and support. This is particularly important for people who have limited naturally occurring networks. Development of supportive networks and community resource for end-of-life care requires the employment of a community development worker. If this resource is to be available to both primary care teams and hospitals, the community development worker needs to be integrated into the clinical teams. Building relationships and common working practices requires collaboration on joint initiatives. This is a practice that needs to overcome the major obstacle of siloed working in institutions and services. Community development by its very nature cross cuts multiple organisations and services. For this purpose, community development for compassionate communities, as an interdisciplinary and participatory activity, will help healthcare services transcend boundaries that reinforce exclusion and limit care.

Develop pathways to easy access to advice from specialist services through a timely specialist review, irrespective of diagnosis

Linkage to community resource through schemes, such as social prescribing

Community development workers are to be part of the clinical team

The last phase of life presents increased care needs and/ or leads to unplanned admissions to hospital in a situation of crisis. Evidence to this is that people who are being admitted to nursing homes do so more frequently during the last six weeks of life (36). This indicates that nursing homes take on much of the burden of end-of-life care. It may be that building strong resilient networks can provide a community solution to this particular problem. In this way, those who want to stay in their homes for the course of their illness will be able to do so. Network building is a skill that has to be learnt, through experience and through training. Network building is also a skill that community members can practice for themselves, without continuous input from

People who develop strong supportive networks at the end of life establish relationships that last for years (14). This is important in helping to combat the sense of lack of meaning and value that is part of the challenge of having a terminal illness (37,38), or caring for someone at the end of life (39).

Routine use of network mapping and network enhancement for those at the end of life

professionals. Running training programmes for community members and professional carers alike is, therefore, a key component of building resourceful communities.

Review of every death in an after-death audit, looking for opportunities to learn how earlier recognition of the final phase of illness could have improved outcomes

Setting up bereavement peer support groups and linkages to community groups of support and common interest

By joining forces with compassionate communities,

Table 2 Recommendations for changes to generalist palliative care

Use of service directories of local resources seen in social prescribing schemes

A sense of ‘togetherness’ that comes from participation in social networks and recognition as a person who is caring for someone with a life-limiting condition, and, therefore, grieving, also helps to alleviate the fundamental problems of social isolation and loss experienced during bereavement (40). These are issues that adversely impact upon health in the long-term, causing psychological morbidities and increased mortality risks Bereavement(33,41).isassociated with worse health outcomes indicated by the presence of physical symptoms and increased use of medical services (33). It has been estimated that bereavement impacts upon hospital inpatient days, and adds to the cost of healthcare services by between £16.2 million and £23.3 million per year (42). The same study found that in the long-term (2 years post-loss), bereaved people were still distressed, and more likely than non-bereaved individuals to be out of work. If we also take into consideration the economic, social and psychological consequences of bereavement the overall impact is likely to be considerable (43,44). It is not a coincidence then that during the early days and months of death, there is increased mortality risk among the bereaved - depending upon experiences of caring and circumstances of death (33,45).

Early identification of people at the end of life, irrespective of diagnosis

Participation in the Compassionate City Charter implementation

Civic end-of-life care recommendations

The Compassionate City Charter (7) is a succinct way of

psychological and medical impact of serious illness, caregiving, and bereavement. A compassionate city is a community that recognizes that care for one another at times of health crisis and personal loss is not simply a task solely for health and social services but is everyone’s responsibility (7).

Employment of community development workers in primary care to assist people with end-of-life care needs in building supportive networks. Their work includes mapping of existing support and setting up new groups where there are gaps and unattended needs.

Develop programmes that train community members to support the end of life and its care. Schemes such as Compassionate Neighbours (48)serve such purposes efficiently. Community members trained in the use of public resources for the benefit of patients with end-of-life care needs play similar roles. Their presence helps people to be signposted to the supports they need most. Community programmes also encourage social cohesion and the formation of communities bound by compassion—their members look out and support one another

healthcare services can do much to support the health and wellbeing of carers and the bereaved. Such partnerships are more likely to improve carers’ experience at the end of life, as well as address the issue of continuing bereavement care post-loss (46). One of the main reasons that people with caring needs avoid building supportive networks is that they do not want to be a burden to others. Post-loss they are also more likely to withdraw and lose all available supports (14). However, based upon the experience of people involved in similar roles and responsibilities, burden is not an issue. Rather, research on volunteering in end-of-life care indicates that caring for someone who is dying is seen as a privilege (47). Compassionate communities in healthcare settings can promote engagement with end-of-life care matters and alleviate concerns that exclude and isolate. Table 3 summarizes the recommendations for the creation and maintenance of compassionate communities working in partnership with clinical teams.

Look for opportunities to support the use of community-led advance care planning within the networks built to sustain community end-oflife

Compassionate cities are communities that publicly recognize these populations, and these needs and troubles, and seek to enlist all the major sectors of a community to help support them and reduce the negative social,

Table 3 Recommendations for building compassionate communities

Runalike community training programmes in skills needed to look after people at end of life. These should include manual handling and pain relief medication administration, including subcutaneous medication

Developcare

a directory of resources that support end-of-life care in the community, and are available to all citizens—the public and professionals alike. This directory needs to be regularly updated

The domains of caring for someone at the end of their lives are not limited to homes, local neighbourhoods, or health care institutions. The experiences of caring are also not limited to solely the main carer but extend through whole caring networks and communities. These experiences are carried through into our wider social domains and activities—our workplaces, schools, places of worship, and countless other social institutions. These social worlds underline and cradle our spiritual experience—our experiences of meaning-making in the face of everyday life and personal crises—and we carry them with us wherever we are. Furthermore, in population health terms, each of us will experience loss and bereavement multiple times in our lifetime. This naturally means we need to find ways of helping and supporting those undergoing these experiences at an everyday level. We need to ensure that when death, dying, caregiving, and loss visit us that—wherever we are, and whoever we are—satisfactory support will be found in all the relevant life worlds that we inhabit.

Community development workers can run a morning café, giving people with similar needs the opportunity to network and ask questions. They may also set up a peer support bereavement drop-in session. Healthcare professionals will be trained in supporting those natural caring networks and their formation.

Community development workers are to be made part of the clinical team caring for the end of life Run training programmes in network mapping and network enhancement. These should be for professionals and community members

Regularly engage social media and cultural centres to stimulate death, caregiving and grief and bereavement projects

S12 Abel et al. Palliative care essentials

organising a purposeful programme of civic action oriented towards the end of life. The Charter is drawn from the principles of the Ottawa Charter for Health Promotion (19,49). The key point in the implementation of the Charter is that most of the individual action points need to be progressed. This does not have to be done all at once but plans do need to be put in place to make sure all the necessary actions are commenced at some point. Some actions may be less relevant for some communities—for example, some communities may not have prisons or refugees. In these cases, adopting communities may need to examine what vulnerable or marginalized groups need instead to be considered in their local area. Art galleries or museums may not be crucial in a particular city or town but other cultural sites and activities may be more relevant. Each community will need to carefully consider how the Charter may need to be modified to create the most effective and impactful civic actions that support their local communities in their participation for end-oflife care. Some basic recommendations on how to start this process is summarized in Table 4

Create a steering committee in collaboration with schools, workplaces, places of worship and other public sectors

apm.amegroups.com

Ann

There is no single right way of instigating and implementing civic action, including use of the Compassionate City Charter. The key component is enthusiasm of a core group of individuals or institutions who want to take an initiative forward. Ideally, as broad a coalition as possible should be involved. This can prove to be difficult with slow moving bureaucracies or engaging elected representatives when these change on a regular basis. It is sometimes necessary to begin a project on a small scale and gradually expand it to become more inclusive. In addition, what works in one place will not necessarily work in another, which means that each area will need to find its own solutions of how to run a civic programme.

Table 4 Recommendations for building civic actions*

Link the steering committee with the compassionate communities programme leaders

Academic and clinical textbooks on Palliative Medicine commonly promote a model of care that is professionalled and health services oriented. There is little emphasis on the importance of the role of community and social relationships in healthcare at end of life. Given that social relationships are a crucial determinant of health (50), finding ways of integrating this into routine healthcare is important for medicine as a whole and palliative care in particular. Community and civic models of action and how these may be partnered and synergized with professional action have been far less common. When the ‘social’ aspects of care are advocated, recommendations and discussions focussed upon support groups or ‘psychosocial’ actions that reduce or confine community involvement to volunteer services or small-scale neighbourhood supports.

We have argued that a health-promoting palliative care service—one designed and fit for purpose as a population health model—must embrace a co-operative model of practice and service design that seamlessly fuses the different levels of clinical and community expertise. This means that it is essential for palliative care to realise a cooperation between specialist and generalist palliative care services, working in partnership with local communities, and the broader civic sectors of society that support and sustain those communities. Each individual sector acting in isolation will not work for palliative and end-of-life care. Rather, the recognition of their inter-dependence, and effective co-operation will make each individual part— specialist and generalist palliative care, compassionate communities and compassionate cities—the New Essentials for palliative care.

Link the steering committee with key health services representatives (specialist and generalist palliative care) and work within a common framework of community networking using thorough databases and directories of community supports

Identification of key civic leaders to form a steering committee for a compassionate city Look for philanthropic, government and private sources of support, as well as administrative support for the Committee

The steering committee will in addition develop a set of action plans based on the compassionate cities charter *, For full set of recommendations see ref (7).

Conclusions

1. Abel J, Kellehear A. Palliative care reimagined: a needed shift. BMJ Support Palliat Care 2016;6:21-6.

22. Mitchell GK. How well do general practitioners deliver palliative care? A systematic review. Palliat Med 2002;16:457-64.

12. Ahmed N, Bestall JE, Ahmedzai SH, et al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med 2004;18:525-42.

S13Annals of Palliative Medicine, Vol 7, Suppl 2 April 2018

Ann Palliat Med

15. Horsfall D, Noonan K, Leonard R. Bringing our dying home: creating community at end of life. Cancer Council New South Wales, New South Wales, 2012.

21. Smith TJ, Coyne P, Cassel B, et al. A high-volume specialist palliative care unit and team may reduce in-hospital end-oflife care costs. J Palliat Med 2003;6:699-705.

Conflicts of Interest: The authors have no conflicts of interest to declare.

11. Luddington L, Cox S, Higginson I, et al. The need for palliative care for patients with non-cancer diseases: A review of the evidence. Int J Palliat Nurs 2001;7:221-6.

None. Footnote

20. Office for National Statistics. National Survey of Bereaved People (VOICES): England, 2015. Quality of care delivered in the last 3 months of life for adults who died in England. Office for National Statistics, London, 2016.

3. O’Mara-Eves A, Brunton, McDaid D, et al. Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis. Southampton (UK): NIHR Journals Library, 2013.

9. World Health Organisation. WHO Definition of Palliative Care (Internet). Available online: http://www.who.int/ cancer/palliative/definition/en/

6. Cronin P. Compassionate communities in Shropshire, West Midlands, England. In: Wegleitner K, Heimerl K, Kellehear A.editors. Compassionate Communities: Case studies from Britain and Europe. Routledge, Oxon, 2016:30-45.

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14. Abel J, Walter T, Carey LB, et al. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care 2013. Available online: http://spcare. bmj.com/content/early/2013/03/05/bmjspcare-2012-000359

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16. Horsfall D, Yardley A, Leonard R, et al. End of life at home: Co-creating an ecology of care. Research report, Western Sydney University, Sydney, 2015.

17. Rowland C, Hanratty B, Pilling M, et al. The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliat Med 2017;31:346-55.

13. The National Council for Palliative Care, Public Health England. National Survery of Patient Activity Data for Specialist Palliative Care Services: MDS full report for the year 2011-2012. The National Council for Palliative Care, London, 2012.

23. To THM, Greene AG, Agar MR, et al. A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care. Intern Med J 2011;41:430-3.

4. South J, Stanfield J, Mehta P, et al. A Guide to Communitycentred Approaches to Health & Wellbeing: Full Report. Public Health England 2014; London. Available https://www.gov.uk/government/uploads/system/uploads/online: attachment_data/file/402887/A_guide_to_communitycentred_approaches_for_health_and_wellbeing.pdf

5. Sallnow L, Richardson H, Murray SA, et al. The impact of a new public health approach to end-of-life care: A systematic review. Palliat Med 2016;30:200-11.

24. Seow H, Brazil K, Sussman J, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ 2014;348:g3496.

2. Kumar SK. Kerala, India: A regional communitybased palliative care model. J Pain Symptom Manage 2007;33:623-7.

8. Pastrana T, Junger C, Elsner F, et al. A matter of definition -key elements identified in a discourse analysis of defitions of palliative care. Palliat Med 2008;22:222-32.

18. Bickerdike L, Booth A, Wilson PM, et al. Social prescribing: less rhetoric and more reality. A systematic review of the evidence. BMJ Open 2017;7:e013384.

19. WHO. The Ottawa charter for health promotion: first international conference on health promotion, Ottawa, 21 November 1986. WHO, Geneva, 1986.

31. Gott MC, Ahmedzai SM, Wood C. How many patients in an acute hospital have palliative care needs? Comparing the perspectives of medical and nursing staff. Palliat Med 2001;15:451-60.

40. Sjolander C, Ahlstrom G. The meaning and validation of social support networks for close family of persons with advanced cancer. BMC Nurs 2012;11:17.

37. Ettema EJ, Derksen LD, van Leeuwen E. Existential loneliness and end-of-life care: A systematic review. Theor Med Bioeth 2010;31:141-69.

34. Larkin M, Richardson EL, Tabreman J, et al. New partnerships in health and social care for an era of public spending cuts. Health Soc Care Community 2012;20:199-207.

36. Kelly A, Conell-Price J, Covinsky K, et al. Length of stay for older adults residing in nursing homes at the end of life. J Am Geriatr Soc 2010;58:1701-6.

35. Kellehear A, O’Connor D. Health-promoting palliative care: A practice example. Crit Public Health 2008;18:111-5.

44. Valdimarsdóttir U, Helgason AR, Johan C, et al. Need for and access to bereavement support after loss of a husband to urologic cancers: A nationwide follow-up of Swedish widows. Scand J Urol Nephrol 2005;39:271-6.

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33. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. Lancet 2007;370:1960-73.

49. Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality 1999;4:75-82.

46. Fauri DP, Ettner B, Kovacs PJ. Bereavement services in acute care settings. Death Studies 2000;24:51-64.

38. Prince-Paul M. Understanding the meaning of social wellbeing at the end of life. Oncol Nurs Forum 2008;35:365-71.

39. Dahlborg Lyckhage E, Lindahi B. Living in liminalityBeing simultaneously visible and invisible: Caregivers' narratives of palliative care. J Soc Work End Life Palliat Care 2013;9:272-88.

48. Attridge C, Richardson H, Muylders S. Building compassionate communities across London and the South East. BMJ Supportive and Palliative Care 2017. Available online: http://dx.doi.org/10.1136/bmjspcare-2017-hospice.90

50. Holt-Lunstad J, Smith TB, Bradley Layton J. Social relationships and mortality risk: a meta-analytic review. PLoS Med 2010;7:e1000316.

25. Currow DC, Agar M, Sanderson C. Populations who die without specialist palliative care: does lower uptake equate with unmet need? Palliat Med 2008;22:43-50.

28. Gomes B, Calanzani N, Higginson IJ. Reversal in British trends of place of death: TIme series analysis 2004-2010. Palliat Med 2012;26:102-7.

27. EOL Profiles: Cause and Place of Death - CCG [Internet]. [cited 18.12.2015]. Available online: endoflifecare-intelligence.org.uk/profiles/CCGs/Place_http://www. and_Cause_of_Death/atlas.html

41. Holt-Lunstad J, Smith TB. Loneliness and social isolation as risk factors for mortality: A meta-analytic review. Perspect Psychol Sci 2015;10:227-37.

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29. Horsfall D, Higgs J. Palliative Care. Community-Based Healthcare: Springer, 2017:123-32.

47. Sévigny A, Dumont S, Cohen SR, et al. Helping them live until they die: Volunteer practices in palliative home care. Nonprofit Volunt Sect Q 2010;39:734-52.

43. Bonanno GA, Kaltman S. The varieties of grief experience. Clin Psychol Rev 2001;21:705-34.

30. Horsfall D, Leonard R, Rosenberg JP, et al. Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care. Health Place 2017;46:58-64.

26. Small N, Barnes S, Gott M, et al. Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliative Care 2009;8:6.

Cite this article as: Abel J, Kellehear A, Karapliagou A.Palliative care—the new essentials. Ann Palliat Med 2018;7(Suppl 2):S3-S14. doi: 10.21037/apm.2018.03.04

32. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-73.

42. Stephen AI, Macduff C, Petrie DJ, et al. The economic cost of bereavement in Scotland. Death Stud 2015;39:151-7.

45. Christakis NA, Iwashyna TJ. The health impact of health care on families: A matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med 2003;57:465-75.

Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 4.0 License (http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).

dEC l ARATI on oF C on Fl I CTI ng In TERESTS: T he author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Furthermore, there is now a widely acknowledged challenge that palliative care has significant access issues.4 Palliative care

Julian Abel1 and Allan Kellehear1

RECEIVE d: M arch 15, 2018. ACCEPTE d: M ay 11, 2018.

CoRRESPondIng AUTHoR: Julian Abel, Compassionate Communities UK, Shepton Mallet, Trewoon Farm, St Martin, Helston, Cornall TR12 6DT, UK.

FU nd I ng: The author(s) received no financial support for the research, authorship, and/or publication of this article.

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There is now wide recognition, in recent and current policy documents described below, that dying people, caregivers, and the bereaved have very specific public health needs – depres sion, social isolation, lost work or school days, or disturbed social relationships. Most of these troubles are explicitly social in nature and are amenable to prevention, harm reduction, and early intervention strategies. Broadly speaking, symptom con trol issues and addressing psychological, social, and spiritual needs through professional service interventions falls into the category of harm reduction. However, ameliorating symptoms or addressing need is quite a different matter from health pro motion and well-being.1 Active participation in enhancing well-being has been at the forefront of recent developments in the new public health approach2 to palliative care. Supportive networks surrounding patient and carer form a rich source of meaning, actions, and value to all involved, which persists years into bereavement.3 Palliative care services have an important role in stimulating these communities of support, whether they are individual networks surrounding the patient, in the work place, educational institutions, or neighbourhoods.

ABSTRACT: The UK Palliative Medicine Syllabus is critically evaluated to assess its relationship and relevance to contemporary palliative care policy and direction. Three criteria are employed for this review: (1) relevance to non-cancer dying, ageing, caregivers, and bereaved populations; (2) uptake and adoption of well-being models of public health alongside traditional illness and disease models of clinical understanding; and (3) uptake and integration of public health insights and methodologies for social support. We conclude that the current syllabus falls dramatically short on all 3 criteria. Suggestions are made for future consultation and revision.

K E y wo R d S: Palliative medicine, syllabus, curriculum, training, public health, United Kingdom

Palliative Curriculum Re-imagined: A Critical Evaluation of the UK Palliative Medicine Syllabus

emphasis on personal challenges for individual patients rather than social challenges for and inside their networks and supports.Furthermore, this emphasis on the team approach results, almost by definition, in a focus on professional interventions alone (ie, direct services) whatever the profession, and when these are deployed, commonly as a short, if regular, face-to-face style encounter (ie, mostly an acute care intervention). In the last 10 years of palliative care development, this solely profes sional services approach to human problems has come under increasing scrutiny, criticism, and revision.

Introduction

Palliative care is that branch of health care devoted to the care of dying people and their families. As the World Health Organization (WHO) guidance argues, it is not solely about prognosis but also needs, not solely about the dying person but also their caring networks (http://www.who.int/cancer/pallia tive/definition/en/). Although treatment and care of dying people living with progressive and non-curable forms of lifelimiting illness is a central focus, this care is not limited to physical care but also includes psychological, social, and spirit ual forms of support. The reason for this broad remit is based on the widely acknowledged truism that dying is only partly a physical encounter with mortality, with most of the human drama surrounding death, dying, caregiving, and grief lying in the domains of the psychological, social, and spiritual worlds of individuals and their intimate social networks.

For these above reasons too, the speciality of palliative med icine is commonly and internationally seen as a team specialism –a profession usually working closely with other professions in the health services – nurses, family medical (general practi tioner [GP]) colleagues, allied health workers, volunteers, social workers, counsellors, to name only a few of these collaborators. For those working in palliative care, levels of competency are aimed at ensuring each professional can perform a wide variety of roles where more severe problems may need specialist sup port. For example, family doctors may need specialist support for symptom science from palliative care specialists: social mat ters might be addressed through actions by social work col leagues and volunteers. Psychological challenges might be addressed through relevant referrals to colleagues in psychol ogy or psychiatry. Spiritual challenges might be referred to a chaplain or pastoral care colleague. In general, non-medical challenges have frequently been referred to as ‘psychosocial issues’ – a phrase and a practice that commonly sees greater

Ty PE: Perspective review

DOI:©VolumePalliativehttps://doi.org/10.1177/1178224218780375Care:ResearchandTreatment11:1–7TheAuthor(s)201810.1177/1178224218780375

Email: julianabel@compassionate-communitiesuk.co.uk

1Palliative Care, Faculty of Health Studies, DHEZ Academic, University of Bradford, Bradford, UK.

further iteration of the 2008 End of Life Care Strategy emerged as the ‘Ambitions for Palliative and End of Life Care: A National Framework for Action’ policy docu ment.12 In this policy – which included a consultation with the Royal College of Physicians – 6 ‘ambitions’ were described and the sixth was the exhortation that ‘Each community is prepared to help’. Everyone has a role to play in end-of-life care – not simply or solely health professionals.

It is looking to these national policies and guidance docu ments that we gather up a criteria to assess the adequacy and relevance of the UK Palliative Medicine Syllabus. What does this syllabus look like and how well does it mirror and promote the policy values and assumptions of these recent documents? Has palliative medical training re-oriented to the ‘new’ public health challenges in these policies? Does the syllabus reflect that fine balance – required nationally for the last 10 years – of clinical and community practice, of the requirement to be inclusive of caregivers and the bereaved, and of balancing an illness and disease model of dying and grief with an overlap ping model of health and well-being?

The aim of this article is to critically evaluate the key sylla bus used in the UK training of palliative care doctors. We assess this document against current practice guidelines widely avail able in palliative care and public health policy sectors. We argue that the current syllabus reflects an over-attention to clinical concerns of harm reduction and lacks acknowledgement – or simply under-emphasizes – crucial public health and social concern. There is a particular lack of emphasis on promotion of health and well-being. Health promotion in the context of pal liative care does not refer to merely altering the disease trajec tory. Rather, it refers to a wide variety of ways of creating and enhancing positive meaning, action, and value in the experi ences of death, dying, loss, and caregiving for all those involved. In these ways, the current UK syllabus inadequately prepares its trainees for the main social and public health challenges of liv ing while dying, or living with long-term caregiving, grief, and bereavement.Insupport of these observations, we organize the article in the following way. First, we will provide a brief overview of cur rent, and publicly acknowledged, social and public health chal lenges identified in recent palliative care policy literature. Second, we summarize the UK Palliative Medicine Syllabus. We then proceed to outline the basic problems with the sylla bus as a whole, taking particular note of its public health omis sions and deficits. We conclude with some final reflections and suggestions for this curriculum’s future development.

Recent palliative care policy in the United Kingdom has con sistently emphasized and highlighted the need for attention to social aspects of care. As early as the 2008 End of Life Care Strategy5 – a policy that preceded the Palliative Medicine Curriculum we are about to assess – there is a clear stipulation that all palliative care from all professions must support carers and the bereaved. Palliative care is not simply care of those liv ing with a life-limiting illness but it also includes care for those

The current UK Palliative Medicine Syllabus was prepared in 2010, with amendments made in 2014 and some minor admin istrative changes made in 2015 – a development process that parallels the timelines of the above national policy documents but departs substantially from them in content. It is a 106-page document authored by the Joint Royal College of Physicians Training Board13 (see inaryments-2014–141015_pdf-63150821.pdf).documents/2010-palliative-medicine-curriculum–amendhttps://www.gmc-uk.org/-/media/Aftersomeprelimpagesdiscussingrationale,purpose,development

2 Palliative Care: Research and Treatment

Current Policy Context for UK Palliative Medicine

caring for the seriously ill, acknowledging that such care could last years in cases of modern metastatic cancer or dementia. Caregivers often experienced morbidities associated with their lifestyle similar to the co-morbidities of those they care for. Furthermore, the bereaved often live with major morbidities and risk to life as do long-term carers – depression and job loss were commonly noted as incidences of suicide and sudden death for the bereaved and caregivers.6-8 Social supports are an essential part of palliative care provision and an explicit require ment of all their related services such as bereavement, cancer, and aged care.

has long been identified with cancer care but now needs to address a rapidly ageing population characterized by chronic illness and multi-morbidity. Frailty, organ failure, and neuro logical conditions often eclipse, or exist alongside malignant conditions for many of today’s dying. Compounding these medical issues of access are further social challenges of lengthy dying trajectories, regional access from rural and remote areas, and addressing marginal populations with special palliative needs, for example, prison populations, homelessness, or eth nic/religious minorities with complex health and bereavement needs.Inthe

The UK Palliative Medicine Syllabus: Overview

The 2011 NICE Guidelines9 were similarly adamant in their Quality Statements 5 to 7 that stipulated: people at the end of life must feel able to maintain social participation accord ing to their preferences and to feel emotionally supported. The NHS Action for End of Life Care for England (2014-2016)10 describes what it calls ‘The House of Care’ – a care metaphor that discusses the essentials of palliative care arguing for the centrality of support planning, partnership working, and engagement and involvement with compassionate communi ties – a public health phrase for community development and partnership.11In2015,a

last 10 years, our epidemiological, sociological, and health services understandings have changed dramatically. Is the training that palliative care doctors receive keeping up with these changes? To what extent can we be confident that present and future palliative care consultants are prepared to meet these new public health challenges for the exponentially rising groups of ageing, dying, caregiving, and bereaved populations?

Compounding this growing awareness about social ‘prob lems’ is a lack of acknowledgement concerning the parallel health and well-being aspects of dying, caregiving, and bereave ment – the commonly observed growth of love, intimacy, and friendship; the will to meaning and well-being found in rela tionships during dying, caregiving, or grief; or the powerful support role of community during this time. Palliative care ser vices can actively participate in supporting interventions in these areas, including helping to develop compassionate com munities and supporting civic programmes.21 How well does the current syllabus reflect these contemporary public health insights?There are 13 initial critical observations to be made of the current syllabus. These observations reflect general deficits in the overall document. They are highlighted particularly because they ignore the personal and community dimensions of dying, caregiving, and bereavement and are remarkable for that fact:

The syllabus itself is broken into 3 major sections headed by an aim or several aims to be addressed by the section which is then divided into essential learning outcomes – ‘Knowledge’, ‘Skills’, and ‘Behaviours’. The formal part of the syllabus is then followed by a discussion of Learning and Teaching topics –description of the training programme, supervised work expe rience, teaching and learning methods, discussions of pedagogy, and research options within the programme. This section on learning and teaching is followed by discussions about assess ment and timetabling. This section is followed by others on supervision and curriculum implementation, review, and updat ing. The final section devotes itself to a brief discussion of com pliance with equality and diversity legislation (The Equality Act 2010). Appendices provide a list of contributors to the syl labus and a graphic layout for feedback mechanisms for stu dents taking the training. Most of the comments and observations we make in this article are confined to the syllabus section of this document.

1. In a 106-page document only 4 pages are devoted to psy chosocial care and 1.5 pages to public health concerns, and this despite the claim that palliative medicine must ‘optimize’ (among other things) social support (p. 3).

Abel and Kellehear 3

methodology, description of the training pathway, and some basic remarks about the principle underlying the content of learning, the rest of the document outlines the curriculum for training.Thenumber of pages the syllabus devotes to the different topics of training is itself quite revealing for this is a good indica tor of both topic priority and importance (or conversely their lack). The Introduction to ‘palliative care’ as a concept and phi losophy requires 4 pages; 20 pages are devoted to aspects of physical care; 5 pages are devoted to communication matters; 4 pages are devoted to ‘psychosocial’ care; 2 pages are devoted to culture, language, religion, and spirituality; 12 pages are devoted to management and clinical governance (including quality and safety issues, audits of clinical practice, and so on); and 2 to 4 pages each are devoted to an assortment of other topics such as attitudes and responses to other doctors and professionals, research, self-learning, teamwork, legal frameworks, and ethics.

For some time in palliative care, health promotion was viewed as an oxymoron – a contradiction in terms.14 This understanding has witnessed dramatic change with a strong evidence base within the last 20 years of palliative care litera ture.15-20 The field of palliative care now acknowledges that there are obvious co-morbidities associated with dying, car egiving, and bereavement especially as these pertain to the social (not simply clinical) epidemiology of these experiences –depression, anxiety, loneliness, missed work days, social rejec tion, and job loss among many other social problems. Most of these are not technically ‘psychosocial’ problems – they are social problems relating to poor public and personal support networks, poor or absent school or workplace policies, poor or absent partnerships between health services, social care provid ers, and our communities. Unaddressed, these problems result in poor outcomes in a number of different domains, which may last for years and have an associated mortality. Active participa tion in reducing harm and promoting well-being can have a dramatic impact on lifelong problems.

General Problems

2. Consultation for the syllabus was designed in close consultation with doctors ‘from closely aligned speciali ties such as pain medicine and oncology’ (p. 3) but clearly not from public health or geriatric medicine.

bear upon a handful of health concerns – addressing patterns of morbidity and mortality, and alongside these, promoting pat terns of health and well-being. For problems of morbidity and mortality, most public health practice is aimed at prevention, harm reduction, and early intervention. Overlapping with these problem-based concerns is health promotion – the need to pro mote health and well-being as the optimum strategy against illness, disability, and accident.

Public health is not simply identifying the social determinants of health and identifying social and clinical epidemiological trends. The surveillance functions of public health tend to ste reotype public health by identifying the field solely with these functions. ‘Health services research’ further complicate our aca demic understanding of ‘public health’ by over-identifying this sub-field with intervention/implementation studies and their evaluation methodologies. However, public health concerns are also about community practices – about public education, com munity development and engagement, social ecology (creating healthy environments), development of personal skills, policy development, and social marketing (‘selling’ health, safety, or well-being to communities). Away from university research centres, much public health work consists of the promotion of these different community practices that support the health of ‘publics’. Together all these strands of public health activity

This final observation brings us to the specifically public health deficits to note in the syllabus.

Section 2.15 is devoted to ‘public health related to palliative care’. This is a page and a half of text broken into further sec tions on the required knowledge, skills, and behaviours expected from this specific field. The remarkable facts to note about this section are as follows:

4. The concept of community is commonplace in the doc ument but its meaning as a social influence on health and well-being appears trivial and isolated (p. 28), eclipsed as it is by larger concerns with other less public health orientated meanings. The syllabus is more con cerned with community as a potential work site (pp. 3, 82, 83, 85); as a place where a service might be located (pages 14, 32) or where patients might be found (p. 14); as a site for risk management of communicable diseases (p. 30); or as a site for managing one’s own risk and personal safety when visiting (p. 48); and finally, as a site where one might assess ‘health needs’ or ‘commu nity action and advocacy’ without specifying what these might be (pp. 70, 72).

4. As an extension of the general problem with the sylla bus, the idea of community is left vague and unpacked. There is no mention of the role of palliative medical leadership in relation to school or workplace policies or advice; no mention of the potential influence of pallia tive medicine on church or temple activities for support in palliative, bereavement, or aged care; no mention of any outreach role for prisons or the homeless despite explicit recommendation to understand that role else where in the syllabus (p. 42).

7. Conflict, on the other hand, between patients and pro fessionals and between professionals themselves, is mentioned 20 times.

6. Love, intimacy, and friendship are given no mention –arguably the most important factors in the promotion of health and well-being at the end of life, and for bereaved people, and important protectors against, if not breaks upon, risk of poor psyche and spirit.

2. There is no requirement to understand the co-morbid ities or mortalities – the social and clinical epidemiol ogy – of living with advanced ageing, dying, long-term caregiving, or grief and bereavement.

4 Palliative Care: Research and Treatment

13. As a medical training document, the co-morbidities of dying, caregiving, or bereavement enjoy absolutely no

profile in the syllabus. There is correspondingly a clear absence of any public health practice methods to address these. There is scarcely a mention of the health and wellbeing aspects and implications for these populations.

8. Well-being is mentioned only twice and one of these refer to self-care management for professionals.

12. There is mention of confusional states and hallucina tions but no mention of common and well-documented experiences near-death that do not conform to these psychiatric categories – near-death experiences, death bed visions, or visions of the bereaved. The prevalence of these experiences at the end of life is significant and var ies from 10% to 80%.22 Their omission is not explained.

3. The claim about the importance of ‘shared care’ does not include sharing that care with community or other civic organisations and sectors that work with or along side the dying, caregivers, or the bereaved.

Public Health Deficits

10. Meaning – a crucial existential and religious exercise for most people at the end of life and in bereavement (as it often is during the course of life itself) – is men tioned only once (p. 49) and is linked only to illness not to death, nor to loss, nor to life or human bonds.

1. The knowledge requirements are not specifically related to life-limiting illness, ageing, caregiving, or bereavement. Trainees are expected merely to understand the public health factors that influence general health and illness.

7. Although trainees are required to understand the influ ence of culture and beliefs on health perceptions, they are not required to apply this to death, dying, caregiv ing, or grief and loss.

8. Among the modest number of skills trainees are required to accrue by studying this part of the syllabus one of them is to ‘identify opportunities to improve

5. Fear and fear of death – the subject of endless academic and fictional treatments in literature, poetry, theatre, and film – receives one mention (p. 26). It rates as a problem on par with anxiety and insomnia.

5. Although trainees are expected to have an understanding of ‘the effects of addictive and self-harming behaviours on personal health’, they are apparently not required to have an equally important understanding of the effects of social supports on personal health and well-being.

6. Although trainees are required to understand the ‘prin ciples of mapping service provisions and gaps’, this does not extend to mapping civic and neighbourhood social supports.

11. Although there are 2 pages devoted to the important topics of religion and spirituality, rather inexplicably there is no mention of god – a subject at the very centre of the majority of world religions and its many living and dying adherents.

9. Hope is mentioned twice in the whole document (p. 50) but happiness or its opposite, despair, do not appear as concerns.

3. There is no requirement to understand key concepts (prevention, harm reduction, early intervention) or their methods and to link these to palliative care (com munity development, social ecology, death literacy, social marketing, health promotion).

Psychosocial Care

access to palliative care’ – and not it should be noted –to identify opportunities to improve wider social sup ports where patients and their families live and work.

5. Typical of ‘psychosocial’ texts most everywhere in pal liative care, trainees are expected to ‘know about theo retical concepts of individuality’ but not those concerned with community.

7. There is a stipulation that trainees must learn to know when and how to use a family meeting but the same is not required for community meetings.

The remarkable facts to note in this section are as follows:

12. Regrettably, the heavy emphasis on negative themes continues throughout the section with trainees expected to ‘identify psychological responses as a source of

1. Terms such as community, civic, friendship, or neigh bours fail to even rate a mention in this section.

Abel and Kellehear 5

13. The public health section of the palliative medicine syl labus demonstrates poor familiarity with crucial concepts and methods in general public health policy and practice. Worse still, the syllabus evidences no familiarity with the established health-promoting or public health literature devoted specifically to palliative care policy and practice.

6. Trainees are expected to use genograms to understand family relationships but they are not equally exhorted to use sociograms24 to understand community support and relationships – networks crucial to the support not only of patients but also the very families that form the basis of the required genograms.

8. The trainee is expected to help ‘create environments that accommodate the needs of patients and families in the provision of palliative care’ but apparently not the civic environments that contextualize the family’s cir cumstances of support. The spaces referred to seem to be inpatient or home environments only. The ecology of care is fundamentally important in supporting patients, families, and friends at a time of stress and distress and includes place as well as relationships.3,25

9. Trainees are to ‘work collaboratively with professional colleagues’ but not apparently with community leaders, and yet it is these leaders who are crucial in leveraging and maintaining the major civic sources of support for those living with life-limiting illness, caregiving, and bereavement.

11. The explicitly psychological sub-section of this psycho social discussion emphasizes the need to describe impacts and responses to pain, intractable symptoms, uncertainty, loss, sadness, and depression, but there is no equal stipu lation to discuss love, friendship, community support, meaning-making, well-being, or happiness and their impacts. And yet these uplifting experiences are as widely documented as negative experiences and are equally cru cial in understanding individual adaptation and adjust ment, coping, and health and well-being.

10. Trainees are expected to ‘counsel patients’ (but not fam ilies) about their ‘ideas, concerns and social networks’ but if they do not have any, or their networks are minor, trainees are not urged to consult anyone else.

11. As a doctor, one should recognize a responsibility for ‘promoting a healthy approach to life and work’ but not apparently while living with a life-limiting illness, dur ing long-term caregiving, or through the process of grief and bereavement.

12. Ironically for public health advocacy, trainees are expected to engage in ‘effective team-working’ but not support building, and to engage in ‘service develop ment’ but not community development.

9. There is no mention of one of the largest environments where the dying are increasingly found, aside from the usual hospitals, hospices, or home – nursing and care homes.

The section devoted to ‘psychosocial’ might be expected to say more or to further elaborate on matters to do with the ‘social’ side of palliative care – such as social support, community engagement or participation, neighbourhood relationships, or civic roles in palliative care. But it does not do so. Instead the problem of ignoring or minimizing social supports in a docu ment that extols the need to ‘optimize’ social supports contin ues to fail to do so. As with the history of this use of the phrase in palliative care, ‘psychosocial’ seems to be a term that consist ently fails to provide specific details about social life and instead often quickly slides all too readily into social psychology and psychotherapeutics. The supportive network in which the patient and carer live has great potential to enhance the most meaningful components at a critical time in their lives. Actively engaging, supporting, and enhancing these networks, doing what is most meaningful for people, should be part of routine practice for palliative care professionals. Not doing so is not just an act of omission, it may actually cause harm.23

2. The emphasis is firmly on assessment of patient and family needs but not the needs of their social networks to support the patient and their family – not work places, places of worship, schools, or social media.

4. Although trainees are expected to be familiar with a range of agencies that might support the disabled patient and their family, there is no similar injunction to be familiar with the informal and civic supports available to them.

10. There is a stipulation that trainees are expected to ‘pro vide palliative care to the homeless and those in cus tody’, but no details are offered concerning the achievement of this goal.

3. Although there is a requirement to ‘discuss the impact of illness on interpersonal relationships’, there is no equally important exhortation to discuss the impact of interpersonal relationships on illness – and well-being.

1. Naidoo J, Wills J. Foundations for Health Promotion – E-Book . London, England: Elsevier Health Sciences; 2016.

15 Ku mar SK. Kerala, India: a regional community-based palliative care model. J Pain Symp Manage. 2007;33:623–627.

14 Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality. 1999;4:75–82.

12 National End of Life Care Partnership. Ambitions for palliative and end of life care 2015. http://endoflifecareambitions.org.uk.

additional problems and their role in obstructing the goals of care’. There is no equal stipulation that trainees should identify psychological responses as a potential source of solutions to problems or as helping to meet the goals of care.

Author Contributions

8. Bowling A. Mortality after bereavement: an analysis of mortality rates and asso ciations with mortality 13 ye ars after bereavement. Int J Geriatr Psychiatr 1994;9:445–459.

9. National Institute for Health and Care Excellence. NICE Guidance (2011): End of Life Care for Adults, Quality Standard 13. London, England: NICE; 2011.

service culture of palliative medicine and fail to direct attention to the crucial partnership challenges of working with commu nity. These limits to psychosocial care are invitations to a greater understanding of health promotion and community development.Finally,public health insights must be applied understand ings for palliative care and not solely abstract epidemiological information bereft of practice guidance. Exhortations for pro moting health in the general population, or to understand the epidemiology of life-limiting illness alone, are too easily inter preted as a form of death denial or death avoidance. There is irony here. Palliative medicine was born from the need to openly discuss dying, death, and loss, to bring these topics out of the shadows of medical over-treatment and the stigma of treatment failure. However, the absence of symptoms, includ ing psychological and spiritual distress, is not the same as improvement in well-being. Palliative care can and should have a balanced approach towards harm reduction through control of symptoms of all kinds, but this should be balanced with a promotion of health and well-being through active enhance ment of community support. In these ways, a strong public health approach to palliative care can provide not only a deeper understanding of the co-morbidities associated with mortality but also the insights from a well-being model that can help us and our patients to transcend them.

Concluding Reflections

6 Palliative Care: Research and Treatment

3. Horsfall D, Yardley A, Leonard R, Noonan K, Rosenberg JP. End of Life at Home: Co-creating an Ecology of Care. Penrith, NSW: Western Sydney University; 2015.

The Psychosocial section of the UK Palliative Medical Syllabus is bereft of public health and sociological concepts related to illness, caregiving, and grief and bereavement. From an academic public health point of view, and from the point of view of contemporary UK palliative care policy, this palliative medicine syllabus fails to deliver important current content and insight for its trainees.

13. The final section on grief and bereavement views these human experiences entirely negatively (there is no attempt to identify positive outcomes, assets, and attributes of the grief process) while the solution to sorrow is to ‘know about bereavement support and the organization of sup port services’. There is no mention of social assets – from friendship to workplaces and schools, from religious meaning and meetings, or to the healing role of commu nity recognition and ritual. The bonds formed by caring networks often deepen and increase in number, and these last for years post bereavement and are an important part of how communities help to resolve grief.26

The curriculum for UK Palliative Medicine will inevitably undergo revision – as all training documents do. When that time and process comes around again, we suggest that the public health approach to palliative care is embedded in the new curriculum. First, a wider circle of consultation will help avoid the omission and errors noted here. Medical colleagues from public health and geriatric medicine are crucial for a more informed public health framework and a more balanced understanding of both the epi demiology of ageing and dying as well as caregiving and bereave ment. The omission of discussion and learning objectives related specifically to aged care is deeply unfortunate for a palliative care training document. Palliative care is not solely terminal cancer care. The clinical and policy demands for a broader involvement in ageing-related disease such as neurological disorders, organ failure, dementia, and even frailty have been debated and argued for over a decade now. The exponential rise in demographic age ing trends makes this attention even more urgent. Collaboration with gerontology can only strengthen the relevance and value of future palliative care learning and practice.

Second, it will be important to consult the established aca demic literature on health-promoting palliative care and to closely examine the existing palliative care policy documents for their stipulations and recommendations for social forms of support and care. Leadership and partnership are crucial new roles for palliative medicine in an age of the ‘new’ public health. Psychosocial approaches to care affirm the dominant direct

4. Abel J, Kellehear A. Palliative care reimagined: a needed shift. BMJ Support Pal liat Care. 2016;6:21–26.

The article was formulated by both AK and JA. AK wrote the first draft which was then adapted by both authors.

Refe R en C e S

5. Richards M. The end of life care strategy: promoting high quality care for all adults at the end of life. End of Life Care Strategy, 2008;9–13.

7. Pa rkes CM, Prigerson HG. Bereavement: Studies of Grief in Adult Life. New York, NY: Routledge; 2013.

10. NHS England. NHS England’s Actions for End of Life Care. London, England: NHS England; 2014.

11. Kellehear A. Compassionate Cities. London, England: Routledge; 2005.

13 Joint Royal Colleges of Physicians Training Board. Specialty Training Curriculum for Palliative Medicine. London, England: Joint Royal Colleges of Physicians Training Board; 2010.

2. Baum F. The New Public Health. Oxford, UK: Oxford University Press; 2016.

6. Wa ldrop DP. Caregiver grief in terminal illness and bereavement: a mixedmethods study. Health Social Work . 2007;32:197–206.

4. R empel GR, Neufeld A, Kushner KE. Interactive use of genograms and ecomaps in family caregiving research. J Family Nurs. 2007;13:403–419.

18. Abel J, Walter T, Carey LB, et a l. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care. 2013;3:383–388.

16. Kellehear A, O’Connor D. Health-promoting palliative care: a practice example. Crit Pub Health. 2008;18:111–115.

2 3. R osenberg JP, Horsfall D, Leonard R, Noonan K. Informal care networks’ views of palliative care services: help or hindrance? Death Stud . 2017;42: 362–370.

17. Horsfall D, Noonan K, Leonard R. Bringing our dying home: how caring for someone at end of life builds social capital and develops compassionate commu nities. Health Soc Rev. 2012;21:373–382.

21 Kellehear A. The compassionate city charter. In: Wegleitner K, Heimerl K, Kellehear A, eds. Compassionate Communities: Case Studies from Britain and Europe. Abingdon, UK: Routledge; 2016:76–87.

6. Rosenberg JP, Horsfall D, Leonard R, Noonan K. Informal caring networks for people at end of life: building social capital in Australian communities. Health Soc Rev. 2015;24:29–37.

5. Horsfall D, Leonard R, Rosenberg JP, Noonan K. Home as a place of caring and wellbeing? a qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care. Health Place . 2017;46: 58–64.

0. Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: a systematic review. Palliat Med . 2016;30: 200–211.

2 2. Kellehear A. Unusual perceptions at the end of life: limitations to the diagnosis of hallucinations in palliative medicine. BMJ Support Palliat Care 2017;7:238–246.

19. Wegleitner K, Heimerl K, Kellehear A (eds). Compassionate Communities: Case Studies From Britain and Europe. London, England: Routledge; 2015.

Abel and Kellehear 7

Introduction

Allanjulian.abel@nhs.netKellehear

DOI: permissionssagepub.com/journals-Article©263235242093449110.1177/TheAuthor(s),2021.reuseguidelines:

Advance care planning re-imagined: a needed shift for COVID times and beyond

Helen Kingston

5. Nurturing carer well-being may best be achieved at home.

Frome Medical Practice, Frome, UK

The evidence for its use is therefore not specific enough. This lack of clear answers may also not be either the only reason or the most important reason which hinders the widespread uptake of ACP. Many clinicians have a natural reluctance to initiate conversations about death and dying for fear of perpetuating, or precipitating, a loss of hope among patients and families. Just as importantly, many patients find this style of intervention counter-intuitive to their own per sonal experience and expectations. In this arti cle, we argue that ACP should be focussed around what matters most to people, rather than the current emphasis on a narrow harm reduc tion of avoiding unwanted treatments, recom mending a more socially inclusive approach to

University of Bradford, Bradford, UK

2. A primary carer’s ability to sustain caring can be supported when caring is at home.

context of end-of-life and palliative care, Horsfall and colleagues5 provide evidence that

Palliative Care & Social Practice

Catherine Millington Sanders

1. Home is central to caring network forma tion and function in end-of-life care.

Correspondence to: Julian Abel

TheACP.positive

4. Place is crucial to maintaining identities and connections.

While the use of advance care planning (ACP) is a widespread recommendation for those patients who have life limiting illnesses, the evidence base for taking this approach needs expanding. A sys tematic review in 2014 found some positive impact in the use of ACP.1 A further systematic review in 20162 of randomised controlled trials suggested that the evidence was open to bias and that higher quality trials are needed to be able to demonstrate scientific evidence of effectiveness.

Palliative Care & Social Practice journals.sagepub.com/home/pcr 1

Mark Taubert

2020, Vol. 14: 1–8

Velindre University NHS Trust, Cardiff, UK Cardiff University, Cardiff, UK

RCGP / Marie Curie National Clinical End of Life Care Champion, London, UK

People choose to be cared for and die at home (and this might also include the care home) not just because it is a safe, familiar place, but also because meaning and value in life are found in the people we know and love as well as in the places we know and love. This is the social ecology of care: linking per sonal health and well-being to its local environmen tal determinants.6 It is the positive impact of good relationships with people and place that matter most in life, and consequently at its end, and not solely for the patient alone but to their whole caring network. We argue that ACP should be focussed on this dimension of care in the first instance, rather than focussing only on where people die, what treatments they might refuse or whether they have a do-notresuscitate order in place. The underlying rationale is drawn from the acknowledged linkages between identity, place and well-being and further described within a public health palliative care approach. These above fundamentals, once discussed with patients and their loved ones, can lead into and open up the other areas, including ceilings of treatment or places of preferred death. When conversations begin about values, other approaches to life, death, dying and community flow more easily.

Kingston CCG, Teddington, SWLUK

Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).

impact of social relationships on happiness, well-being and length of life is pro found.3,4 This is where we suggest ACPs should focus their joint discussions and plans. In the

TrewoonCommunitiesCompassionateUKFarm,TR12 6DT

Part of the problem lies in differing outcome measures and lack of differentiation between Do-Not-Resuscitate orders, Preferred Place of Care, Preferred Place of Death and Treatment Escalation Plans.

3. Maintaining identity, a sense of belonging, and connections are central to well-being.

STP, Wimbledon, UK

Julian Abel , Allan Kellehear, Catherine Millington Sanders, Mark Taubert and Helen Kingston

934491 Practice Viewpoint

Kellehear7 first described the public health approach to palliative and end-of-life care in his book Health Promoting Palliative Care. Subsequent texts provided further elucidation.8,9 Drawing on the principles of health promotion and harm reduction, Kellehear10 applied them in a practical way, pointing out that death, dying, loss and car egiving is everyone’s civic responsibility, not just solely that of health and social care services.

1. Building healthy public policy, 2. Creating supportive environments, 3. Strengthening community action, 4. Developing personal skills, 5. Re-orienting healthcare services towards pre vention of illness and promotion of health.

The public health approach to palliative and end-of-life care

According to the Ottawa Charter, ‘Health Promotion’ is a health strategy that aims to incor porate skills and community development, create supportive environments for health, endeavours to build healthy public policy and looks at re-orient ing health services.13 The Ottawa Charter for Health Promotion, formulated in 1986,14 describes five key areas of action:

In the context of ACP, health and well-being pro motion focusses on building supportive environ ments, not just as a way of coping with care needs, but as a way of building positive relationships and goals for both patient and caring network. Abel and colleagues15 describe how these networks function and how they can be used to enhance meaning and value within the caring network at the same time as coping with the demands placed upon it. Leonard and colleagues16 confirmed the evidence behind this approach.

Re-imagining ACP: beginning at the beginning and not at the end Both primary care and hospital physicians can struggle to start ACP conversations.18,19 There are a number of perceived barriers, including not having enough time, lack of coherence of the physician view of best treatment from that of the patient, and not knowing the right time to initia tive the conversation in the context of chronic illness among others reasons. Furthermore, beginning a conversation on ACP can be seen as a death sentence by patients who may not feel they are close to death while there is still signifi cant life to live. This discordance of experience and aspiration can be particularly harmful to the physician–patient relationship, as patients may feel that their physician is giving up on them.

‘Completion rates’ for ACP are dependent on diagnosis and local practice, with people with cancer diagnoses having higher completion rates than those with multiple chronic conditions.20 These conversations are deemed to be difficult by the health professionals who conduct them. A perceived lack of communication skills of the attending physician is quoted as the main reason

including smoking, teenage pregnancy and sexu ally transmitted diseases such as HIV/AIDS. Therapeutic interventions in palliative and endof-life care can be seen as a part of harm reduc tion, whether this be physical, social, psychological or spiritual. A process of disease exchange takes place for the administration of drugs. The bene fits of taking them outweigh both the side effects of the drug and the symptoms arising from the physical and mood associated impacts of the dis ease. Likewise, addressing concerns and worries are a form of harm reduction. Of themselves, their relief does not automatically contribute to well-being, although relief of distress creates the necessary environment in which well-being can flourish. ACP in its current use is concentrated around harm reduction, avoiding interventions that are deemed to be potentially harmful. These include unnecessary or unwanted admission to hospital, inappropriate resuscitation and admin istration of treatments that may prolong life when this is not desired. While the metrics are accessible and measurable, the focus on them at the expense of health and well-being promotion has the consequence of not allowing the patient and caring network determine what matters most to them.

Harm reduction, an approach originally used to provide an alternative other than abstinence in drug and alcohol dependency17 has been success fully extended into a variety of other fields,

Palliative Care & Social Practice 14 2 journals.sagepub.com/home/pcr

Death literacy, similar to health literacy, is a nec essary part of the public health approach11 and knowledge of ACP fits neatly into this model. Kellehear12 describes how principles of commu nity engagement and development are part of the broader approach in increasing the use of ACP. It is possible to extend the principles of health and well-being promotion and harm reduction further in order to get a clearer understanding of how ACP use can be further developed to be more rel evant to professionals, patients and families.

It is great that you are feeling better after the recent events. It may seem a bit counter-intuitive for me to bring up this topic now that you are feeling better, but have you thought at all what might happen the next time you become very unwell? Is this something you feel ready to talk about now?

In 1.summary,Current

for the lack of completion of ACP in different set tings. However, it may also be true that clinicians are sensitive to the loss of hope that comes from having conversations about death and dying. Many people, particularly when they are not close to dying, are more concerned with how they can live their life to the full for the time they have remaining. The reluctance to have ACP conver sations may be fully justified. Physicians recog nise that patients may want to approach the subject through doing what matters most. This need to do ‘what matters most’ may not be best addressed through a narrow harm reduction strat egy of plans to avoid treatments that many patients may not even have started to think about.

3. How can you gain access to support from your social network of support at a time when you become less well so that you can ensure the priorities you describe in #2?

2. Which of these will become priorities when you become less well?

et al. journals.sagepub.com/home/pcr 3

J Abel, Kellehear

This acknowledges the positive improvement but builds in a discussion about future events and how they might be navigated.

There are barriers to enhancing supportive net works when discussing the third question. These include people feeling that they are managing fine at the moment, to invasion of privacy, to not want ing to bother or be a burden to family and friends and many others. It is important to have this con versation not just with the patient but with main family members present. An individual’s personal ity and the degree to which they are embedded in their community will have a strong bearing. Success in respecting someone’s wishes, particu larly to be cared for and looked after at home as they become increasingly unwell, is difficult to achieve without the cooperation of the family and other close members of the caring network. Discussing what kind of help is useful at end of life clarifies the many different ways it is given. Help can be broadly divided into two categories. The first is practical support, not just to the patient but among the caring network itself. Tasks such as shopping, cooking, cleaning, tending the garden or walking the dog all add to the work that is needed to be able to look after someone.15,21 Sharing these tasks among the caring network not only preserves health in the longer term, it also becomes a source of shared kindness and compas sion among people. As the person with the illness becomes less well, practical tasks will include per sonal care and may involve manual handling. This may not be needed until the later stages of an ill ness and plenty of help can be shared among the caring network before this point is reached.

ACP discussions are mainly focussed on end-of-life care decisions. The term ‘end-of-life care decisions’ is com monly understood in purely clinical terms. That type of discussion refers firmly to

The answers to the first question will vary consid erably, depending on cultural and social differ ences and backgrounds as well as individual preferences and values. The answers to the sec ond question may differ from addressing these broader concerns after breaking bad news. This is because there is a difference between what wor ries people in life when things are going well and what is most important to them in their life when their health becomes threatened or becomes an obvious limited resource. Question 2 naturally flows from question 1. An example might be,

Changing the priorities of the conversation will help to make clinical discussions easier and more relevant with the added advantage of increasing the uptake of ACP. We suggest future ACP con versations focus on three main areas:

1. What matters most to you in life when you are well?

The second kind of help is that of love, laughter and friendship. Loss of identity can happen to both the person with the illness and those who shoulder the main responsibility of caring. Loss of identity can occur as a consequence of loss of job, regular social interaction, or the gradual social inequality forced on one through disabling illness, dependency or home care responsibilities. This can happen both to the person with the illness and a main carer who shoulders most of the responsibility. Nourishing people’s sense of value through compassion, love, laughter and friendship can be transformative at a time where people may feel particularly down hearted about their own sense of self-worth.

We hypothesise that broadening the approach to ACP to include health and well-being promotion will help to increase its uptake. In addition, we hope that these conversations will reduce the reluctance of professionals to initiate ACP con versations, resulting in higher completion rates. Anecdotal clinical experience of their use is that satisfaction is increased in both the patient and the caring network. These are outcomes that can be measured as part of a pragmatic prospective clinical trial. Proving this to be the case will help to change clinical practice of ACP discussions.

Logically emergent from these discussions will be secondary commitments and goals about treatment choices, places of eventual death, do not attempt cardiopulmonary resuscitation (DNACPR) discus sions and forms, and a host of other civic and clini cal desires in the final days as all of these emerge as part of a wider vision of living with dying and caring Approached this way, ACP becomes a social model of health, part of a broader strategy of support while living with dying, and not a threat of hopelessness or an omen of death. The need to document harm reduction decisions of ACP such as DNACPR remains, requiring health professional input of these decisions on the health record. What matters most conversations do not necessarily need a professional to initiate them. However, it is vital that profession als know about them to be able to formulate goals of care that match with patient and family wishes.

Measurement and research

In methodological terms then, a public health palliative care approach to ACP means that the emphasis must be on

2. Because ACP places the emphasis on prox imity to death and not on living with dying, the priorities inherent in this approach do shock. These priorities can so obviously clash with a patient’s lived experience. ACP that integrates the insights from a public health palliative care approach, working with the linkages between identity, place and well-being, feeds but also realigns clini cal concerns with the concerns of all dying people and their carers, that is, with con cerns about health and well-being and the social supports that underpin those experi ences and aspirations.

Having clear qualitative and quantitative out comes of medical interventions is a necessity to be able to demonstrate their effectiveness. The need for measurement of ACP outcomes remains. Good communication between health and social care organisations is part of high-quality care. What matters conversations help to give a joint focus on how and where care is delivered.

3. Finally, the social ecology of the dying expe rience and also its care experience logically necessitate a social model of care in ACP administration and decision-making. This will mean any ACP must be an inclusive pro cess that recognises, encourages and embraces a patient’s social network. That social network will be the most important ingredient to any assessment of quality of care at the end of life. In the context of a public health palliative care, the phrase ‘end of life’ here refers to the lived experience of dying and its care and not solely its clinical manifestations in an individual patient case.

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1. the priorities and values of a person’s lived experience, 2. the envisioning of patient’s social networks, 3. the recognised centrality of experiences of health and well-being as the best guide to an individual’s vision of harm reduction, 4. the value of shared decision-making for cre ating sustainable and desirable outcomes for all.

death and not to the longer part of dying, which may extend to weeks, months and sometimes years before the final days or hours of life. ACP too often confines itself to planning for crisis, final treatment choices and terminal outcomes, and not to living with dying. However, living with dying is actually how most patients experience ‘dying’. It is frequently not the short and commonly institutional experience wit nessed by clinicians in hospitals, hospices or nursing homes.

Our recommendations about changing the nature of this discussion means that it is not limited to any particular stage of a chronic illness. A conversation about what matters most can be had as a part of routine clinical care. Moving to discussions about end of life flow much more easily if the what mat ters conversations are started at an earlier stage of illness. This can help to avoid what can be a shock ing, forced discussion as a sense of urgency devel ops among health professionals about ensuring place of death is written down on paperwork.

Trying to have a sensitive conversation at this time is even more important. Understanding peo ple’s views on a host of treatments and what is important to them more generally is key, particu larly when the option of going to hospital may not be included. On the contrary, the possibility that one may rapidly end up in hospital, separated from family while dying, requires even greater reimagining of ACP. ACPs may need to plan for the ready assemblage and stowage of ‘emergency kits’ as they do in the United States for crisis pre paredness22 (https://www.ready.gov/kit) (in the United Kingdom, these are commonly referred to as grab-and-go or simply go-bags. See https:// www.bbc.co.uk/news/uk-49637873). But instead of bags that contain torches, radios, water bottles and food, perhaps the advance care plans for COVID-19 end-of-life care circumstances will need other ‘life-saving’ but no less social items to have at the ready to go at a moment’s notice. In Wales, paramedics have received Serious Illness Communication skills training, so that they can feed into the ACP approach.23 If the paramedic guidelines alerted future patients and families to the importance of ACPs, especially ACPs in fast moving circumstances, then these patients and families who have not prepared their own go-bags can be made aware of their value, and then quickly prepare one, at the point of paramedic service.

A ‘well-being’ bag with important photographs, cell phones or iPads, precious personal items associated with loved ones that one can plan to hold as a reminder of physically absent

next-of-kin, could be transformational in some of these uncharted situations, especially when isola tion measures are in place. These personal and social items may be among the most important basics for health and well-being at the end of life in the current circumstances. With people now spending more time at home because of stay-athome orders, and with the wider associated awareness of the risk to life, the COVID-19 lock down period provides an important civic oppor tunity for people to anticipate, reflect and prepare for personal risk. Even after the initial lockdown period, many people will spend greater periods working from home rethinking their usual per sonal assessment of life-threatening risk from remote (ageing) to proximate (infectious disease). This is an important public opportunity to reimagine ACP expanding its execution from sim ple written plans to practical preparations in the home. Well-being bags are simply one example of this possible evolution for ACP.

J Abel, A Kellehear et al. journals.sagepub.com/home/pcr 5

COVID-19 and beyond

From a primary care perspective

Our article has been written during the COVID19 pandemic, during which there are enormous challenges to accessing medical care. Normal end-of-life services have been significantly restricted in the United Kingdom, with only the most severely unwell being admitted to hospital. Restriction of use of ventilation is a necessity and people who might have received ventilatory sup port prior to the pandemic may be denied access to it at the current time. People who are admitted to hospital for terminal care may not be permitted visits from relatives and the numbers attending funerals is limited. There is a pressing need for a different kind of ACP when, in the context of a fast moving infectious disease, there is little time for prolonged family or community discussion. The choice of place of care previously available may be denied, home or hospital, and neither may be one’s preferred place.

Consistent with a public health approach more broadly, ACPs in the context of other life crisis planning and preparation, for bushfires, earth quakes, hurricanes and floods, has plenty of pub lic health role models to use and modify for use at the end of life irrespective of its diverse epidemio logical sources. Planning a well-being bag for fast moving and unexpected dying could have wider use in future epidemiological contexts of deadly infectious disease. This is the final way in which ACP has been limited: much ACP thinking has been focussed on chronic, long-term illness and not the faster moving contexts of intensive care and disaster management. This is one more reminder, if any further were needed, that ACP is in urgent need of re-imagining of its current pri orities as an end-of-life care intervention.

It is starting the conversation that matters far more than reaching a defined conclusion. Good ACP is a process of reconciliation and refining views of what is most important, a shared under standing of values. Over several conversations with loved ones, we can share an understanding of priorities, balancing factors and the steps that might need to take place to support these priori ties and enable them to be achieved. The ‘what matters most’ conversation extends beyond endof-life care and is in keeping with the primary care approach used in Frome, becoming a routine aspect of patient care.24

Building on a current strategy: an RCGP end-of-life care perspective

We all deal with uncertainty, and a conversation on what matters most offers hope and a chance of a better course of an illness. A shared understand ing enables a framework in which to make deci sions as a situation changes. It supports those around the individual to process and come to terms with future loss. It can help to create an action plan of support. It should be an affirmation of what each person wants in the life that remains and how best the network around them is able to support this. Above all, this should be a process of positive choices: Out of these discussions, there may come decisions about ceilings of care. But the discussion is about what matters to the indi vidual. That is what is important and that is where the focus should remain.

From a hospital palliative care perspective

Whentick?

In 2019, a partnership between The Royal College of General Practitioners (RCGP) and Marie Curie launched the ‘Daffodil Standards’: the UK General Practice Standards for Advanced Serious Illness and End of Life Care. The Standards aim to take a public health, popula tion-based approach to palliative and end-of-life care, providing high-quality care for those affected by life-limiting illness irrespective of diagnosis. The standards cover the traditional areas of harm reduction: early identification, good care plan ning and attention to symptom control but also include the compassionate community domain. This includes what matters most to both the patient and the caring network. The emphasis is not just on planning for deteriorating illness but also on making the most of life for all. ACP should therefore focus on how this can be achieved and move beyond the confines of planning around place of death. The ongoing conversations include patients and families as the unit of care. Making the most of life is a joint venture with this. Health care can help this process through a health and wellbeing approach to ACP. These public health principles are not limited in application to end-oflife care. Re-imagining ACP not only addresses who is offered discussions to support ACP but

In a hospital support palliative care context, the newer approach described here may build on existing foundations. Hospital palliative care teams have felt a strong drive to encourage con versations around harm reduction, that is, talking about views on future interventions and their risk/ benefit in the context of the individual, and much of their education, for generalist staff, has focussed on this. This has meant that ACP is synonymised with DNACPR, for instance, and that this area is a headline topic. Some ACP education meetings end up being focussed only on treatment escala tion. But another way of doing this is to start from health and well-being, starting more broadly, and then narrowing the focus later on to the harm reduction aspects of care. If the main topic starts out with ‘What do you most like doing at home?’ and ‘What stops you from doing that at present?’ then that can be a gentler introduction to topics like someone’s views on preferred places of death. And it helps get a firmer understanding of the person and their surroundings. What makes them

Palliative Care & Social Practice 14 6 journals.sagepub.com/home/pcr

Intuitively, this conversation is the most pressing and relevant need. It provides acknowledgement of our human condition, suffering, joy and under standing. This is the conversation that supports a fellow human being on their journey through life. Harm reduction decisions may flow from this but only within the context of supporting the individ ual to achieve what matters most

COVID-19, then the uptake of more digital solu tions has been at pace and remarkable. Systems that may have taken years to enter the mainstream NHS and charity IT systems are being fasttracked in, and there is even a choice of providers. In hospital and hospice settings, tablet computers have been set up for video messaging and stream ing, so that even very unwell patients in isolation can interact with their loved ones and communi ties. Articles and blogs to help those less accus tomed to technology have been written in response to the crisis.23,25

considering some of the themes that have come up in specialist palliative care during

This information, again with their consent, is shared on handover and referral forms, to enable community palliative care teams to have discus sions. Some of these discussions will be challeng ing. We must acknowledge that digital video solutions will never have the same quality that face-to-face interactions have, and we must note down the pros and cons during this crisis, as it is likely to form our future approaches, even when COVID-19 has gone.

Building supportive networks at end of life fits within the conceptual framework of the Ottawa Charter for Health Promotion, through creating supportive environments, strengthening commu nity action and developing personal skills. The Shanghai Declaration on promoting health in the 2030 Agenda for Sustainable Development,26 an updated reiteration of the Ottawa Charter for Health Promotion, recognises the importance of cities and communities being essential for health. This broader definition of health includes wellbeing and social ecology. Our recommendations in this article present a challenge of re-orienting health services, linking medical care with that of community action and activation. This requires the caring network to be seen as the primary con sideration for intervention at end of life, rather than being limited to person-centred care.

found%20that%20loneliness, levels%20of%20cognitive%20functionbaseline%20

5. Horsfall D, Leonard R, Rosenberg JP, et al. Home as a place of caring and wellbeing? A qualitative study of informal carers and caring networks lived experiences of providing in-home end-of-life care. Health Place 2017; 46: 58–64.

6. Horsfall D, Yardley A, Leonard R, et al End of life at home: co-creating an ecology of care. Penrith, NSW, Australia: Western Sydney University, 2015.

7. Kellehear A. Health-promoting palliative care: developing a social model for practice. Mortality 1999; 4: 75–82.

Julian Abel https://orcid.org/0000-00021002-5557

2. Weathers E, O’Caoimh R, Cornally N, et al Advance care planning: a systematic review of randomised controlled trials conducted with older adults. Maturitas 2016; 91: 101–109.

8. Kellehear A. Compassionate cities. London: Routledge, 2005.

9. Kellehear A. The compassionate city charter. In: Wegleitner K, Heimerl K and Kellehear A (eds) Compassionate communities: case studies from Britain and Europe. Abingdon: Routledge, 2016, pp. 76–87.

12. Kellehear A. Advance care planning as a public health issue. In: Rogne L and McCune S (eds) Advance care planning: communicating about matters of life and death. New York: Springer, 2013, pp. 333–345.

13. Tountas Y. The historical origins of the basic concepts of health promotion and education: the role of ancient Greek philosophy and medicine. Health Promot Int 2009; 24: 185–192.

J Abel, A Kellehear et al. journals.sagepub.com/home/pcr 7

The authors received no financial support for the research, authorship and/or publication of this article.

15. Abel J, Walter T, Carey LB, et al. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care 2013; 3: 383–388.

1. Brinkman-Stoppelenburg A, Rietjens JA and van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–1025.

14. World Health Organization. The Ottawa charter for health promotion. In: First international conference on health promotion, Ottawa, ON, Canada, 21 November 1986. Geneva: WHO.

11. Noonan K, Horsfall D, Leonard R, et al. Developing death literacy. Progr Palliat Care 2016; 24: 31–35.

10. Kellehear A. Compassionate communities: endof-life care as everyone’s responsibility. QJM 2013; 106: 1071–1075.

References

4. Holt-Lunstad J, Smith TB and Layton JB. Social relationships and mortality risk: a meta-analytic review. PLoS Med 2010; 7: e1000316.

16. Leonard R, Horsfall D, Rosenberg J, et al. Carer experience of end-of-life service provision: a social network analysis. BMJ Support Palliat Care 2018, bmjspcare-2017-001344.http://dx.doi.org/10.1136/

Funding

3. Ortiz-Ospina E and Roser M. Loneliness and social connections. Our World in Data, 2020, loneliness#:~:text=Researchers%20have%20ourworldindata.org/social-connections-and-https://

ORCID iD

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Conflict of interest statement

Conclusion

also deepens connections between general prac tice, their registered population, and the local community network underpinning and support ing that population.

Palliative Care & Social Practice 14 8 journals.sagepub.com/home/pcr

17. Leslie KM, Canadian Paediatric Society and Adolescent Health Committee. Harm reduction: an approach to reducing risky health behaviours in adolescents. Paediatr Child Health 2008; 13: 53–60.

22. Arya A, Buchman S, Gagnon B, et al. Pandemic palliative care: beyond ventilators and saving lives. CMAJ 2020; 192: E400–E404.

24. Abel J, Kingston H, Scally AJ, et al. Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities. Br J Gen Pract 2018; 68: e803–e810.

Visit SAGE journals home/pcrjournals.sagepub.com/online

18. Vanderhaeghen B, Van Beek K, De Pril M, et al What do hospitalists experience as barriers and helpful factors for having ACP conversations? A systematic qualitative evidence synthesis. Perspect Public Health 2019; 139: 97–105.

19. Wichmann AB, van Dam H, Thoonsen B, et al. Advance care planning conversations with palliative patients: looking through the GP’s eyes. BMC Family Practice 2018; 19: 184.

21. Abel J and Kellehear A. Palliative care reimagined: a needed shift. BMJ Support Palliat Care 2016; 6: 21–26.

23. Pease NJ, Sundararaj JJ, O’Brian E, et al Paramedics and serious illness: communication training. BMJ Support Palliat Care 2019, dx.doi.org/10.1136/bmjspcare-2018-001734http://

25. Using Skype during pandemic isolation. BMJ Support Palliat Care 2020, isolation/spcare/2020/03/15/using-skype-during-pandemic-https://blogs.bmj.com/

20. McDermott C, Engelberg R, Sibley J, et al Intensity of end-of-life care and advance care planning among patients with cancer and multiple chronic conditions (S720). J Pain Symptom Manag 2020; 59: 539–540.

26. World Health Organization. Shanghai declaration on promoting health in the 2030 Agenda for Sustainable Development. Health Promot Int 2017; 32: 7–8.

SAGE journals

Yet access to palliative care remains a steady criticism and challenge dogging these services: the over-attention to cancer patients at the detriment of those living with other life-limiting disease groups; the lack of palliative care in rural and remote areas; and the lack of coordination of palliative care with aged care, intensive care or even bereavement care. On top of these service-specific criticisms exist further challenges that amount to neglect of certain social groups: ethnic, racial, religious and sexual minorities.Commonly, the challenges of access to palliative care are viewed solely as a professional service delivery matter. This is an important, even dominant, viewpoint that is rarely assessed. Reimagined away from this perspective, access problems do not lie with communities’ ability to reach a service, but with a failure of professional services to effectively reach out to communities of interest and partner with them, drawing on existing forms of community care. And by ‘community’ we are referring to the roles of citizens within workplaces, schools, faith groups, local government services and neighbourhoods as well as cultural and artistic groups in galleries, museums and sporting associations among others. Each of the people inside these groups experience serious illness, ageing, slow and sudden deaths, long-term caring responsibilities, and grief and loss; so, are well placed (even best placed) to provide timely support and continuity of care at the end of life. Each of these civic contexts are potentially able to develop end-of-life policies, educational experiences and practical actions with respect to their workers, students, parishioners, rate payers, neighbours or audiences.

ABSTRACT

KEYWORDS: access, social inequality, diversity, health promotion, social justice

Hospice and palliative care have come a long way since its medieval and Catholic origins serving the dying poor and pilgrims. Since the 1960s with the pioneering work of Cicely Saunders, palliative care has developed into a full medical and healthcare (multidisciplinary) specialism that not only focuses its expertise on symptom management of life-limiting illnesses but also in the holistic provisions of comfort and supports in psychological, social and spiritual care at the end of life. There are now extensive national networks of palliative care services providing both inpatient, outpatient and home care services variably across the UK.

In order to support this argument, we will commence with a brief review of some of the key reports that have attempted to address the challenge of accessing palliative care services. We will then evaluate their suggestions employing public health criteria that emphasise community development and engagement; strategies proven to have far greater success addressing these problems.1 We then pose alternative suggestions for future practice and consideration.Acommunity-centred approach to health and wellbeing is recommended by Public Health England as a partnership of healthcare services, local authorities and voluntary sector community groups working together to support individual and community health. 2 We might then usefully ask: ‘What approach has been commonly employed to increase access and participation in the field of palliative care?’

PROCESS AND SYSTEMS Access to palliative care reimagined

Access to palliative care is commonly considered as solely a health services challenge rather than a community challenge. Successive healthcare reports continue to pose the question of access and its solution in terms that ask what a service can do rather than what an ally a service can become. However, the question is not what can we do for disadvantaged communities, but rather, what can we do together with them as fellow providers of palliative care. The first part of this article reviews the most common recommendations offered for increasing access to palliative care. The second part advocates an alternative way to address this challenge by employing the key practice methods of a new public health / health promotion approach to palliative care.

DOI: 10.7861/fhj.2021-0040

Introduction

Authors: Julian Abel, A Allan Kellehear, B Jason MillsC and Manjula PatelD

However, palliative care is much more than control of physical, social, psychological or spiritual symptoms. Death, dying, loss and caregiving are events that occur in a community context, with each family and each community having their own meanings and social, understandings of these experiences. The challenge for palliative care services has always been to discover how to support these differing contexts rather than merely meeting clinical needs

Authors: Adirector, Compassionate Communities UK, Helston, UK; B clinical professor, College of Nursing and Health Sciences, Burlington, USA; Cadjunct senior research fellow, University of the Sunshine Coast, Sippy Downs, Australia; D doctoral student, University of Warwick, Warwick, UK

that require support. To meet these broader needs, health and social care services need to specifically pay attention to the issue of palliative care access.

6. work more with these groups to learn about their needs

What is the problem here?

communication to the disadvantaged groups; wider and improved diversity training for end-of-life care professionals; and specific targeting of ‘patient’ populations.

8. build ‘awareness’ promote the service within these communities create diversity-specific services offer translation and interpreting services promote more staff diversity more research should be done (for whom?).

> Improving social marketing (recommendations 5, 8 and 9).

All of these reports strongly recommend greater staff training and awareness raising; the promotion or implementation of translating and interpreter services; greater consultation or involvement from the disadvantaged group; greater equity of actual provision; and improving communication, marketing and, more generally, the problem of under-provision. The LSE report even went so far as suggesting (rather uniquely among this genre of reports) that ‘non-clinical palliative care’ provision should be improved. Rather disappointingly, however, this referred to better use of social care staff and not improved partnership-working with actual communities or civic organisations.

3. promote the group to the palliative care field and the impor tance of those services to them

Only two of the most common recommendations demand that services actually do more for the communities of concern. However, even one of these two recommendations does not demand a change to the way the service is offered, but rather ensuring that the existing services are better understood; translating and interpreting them more effectively. This last recommendation is designed for cultural and linguistic diversity and not for most of the other groups who face geographic or other social barriers. It is a specialised recommendation for one group alone, but it recurs in this list of common solutions because, so often, barriers to service are viewed in terms of culturally or linguistically diverse populations.

Although these papers and reports seem determined to address the access challenges, most of them theorise from a traditional direct-service provision model of public health. Orlovic and colleagues are emblematic of this approach.10 Their list includes recommendations for expanding insurance coverage; incentivising access; improving marketing of end-of-life options; improving

Over the last 15 years or so, the most popular policy suggestions for overcoming the access challenges in palliative care (by recurring theme) appear to be:

1. more diversity training for staff

7. explore the issues relevant to these groups

> Supplying additional services (recommendations 10 and 11).

Julian Abel, Allan Kellehear, Jason Mills and Manjula Patel

Marie Curie UK have published several excellent reports attempting to address the problem of access to palliative care services especially, but not exclusively, among ethnically and sexually diverse communities.3,4 Their recommendations had mirrored the earlier policy reports by the Race Equality Foundation, The National Council for Palliative Care and the Cicely Saunders Institute, while supporting the more recent NHS quality report and a major report by London School of Economics and Political Science (LSE) academics.5–9

The barriers to accessing palliative care services are very well known and the policy reports describing them just keep coming. This tradition of research rehashes the same conclusions and repeats the same recommendations for racial and ethnic minorities, indigenous populations, LGBTQ+ populations, prison populations and the homeless, to name only a few disadvantaged groups.Theproblem of access to palliative care is commonly discussed in terms of addressing an unmet need; differential or complex access; deliberate or inadvertent differential provision; underprovision of services; narrowly defined services (viewing palliative care as only a ‘clinical’ service, for example); or cultural belief or distance barriers of potential users to an existing service. Although it is true that a service looking to improve its performance will examine what resources lie within the remit of that service (differential or under-provision) or recipient challenges (unmet need or cultural and linguistic barriers), the self-defeating problem for palliative care is in employing restrictive understandings about what is already being done in existing populations of interest, and in acknowledging that solely clinical definitions of access may themselves be contributing to the problem.

10.

Inside common lists of ‘barriers’ identified by palliative care services there remains a lack of recognition that it is not just palliative care services that care for the dying and the bereaved.1 Much care for the dying and the bereaved is already being done by and in communities, and by other health services. 2 Little observation and less assessment are made exploring how much a professional services approach that focuses solely on their own active clinical provision itself might contribute towards the very barriers so identified and discussed.

4. ensure our palliative care literature represents/includes these groups

12.

2. improve existing knowledge of group-specific health beliefs/ behaviours

5. publicise examples of excellence to the groups in question

13.

In the above 13 recurring recommendations, we observe a pattern of proposals with three distinct features. These features describe the solutions to increasing access to palliative care.

Note the direction of travel within the pattern of recommendations. Seven of the recommendations about increasing access refer to further developing of the service itself and not the community wherein the challenge has been identified. Three of the recommendations are based on the assumption that, if particular communities are not using the service, it is incumbent upon that service to ‘speak louder’. Maybe those communities have not noticed the service. Maybe they are afraid, ignorant or uninformed. Therefore, maybe the barrier is not a ‘real’ barrier at all, but rather a marketing problem.

Past approaches to promote access to palliative care

11.

Ironically, we can see that the overwhelming professional response to problems identified in particular communities is to improve things for the service. Only one single recommendation does not fit within the three self-referential themes.

Past examples

> Increasing professional development within the service (recommendations 1, 2, 3, 4, 7, 12 and 13).

Recommendation 6 is the suggestion, repeatedly made, that

3. Co-locate and transfer staff and resources to groups that have problems of access, even if only as fractional appointments.

2. Prioritise and trial community building practices in palliative care research into access (patient and public involvement is essential but insufficient if these only represent patients).

9. Community development workers to be an essential part of the service team.

Aside from the self-referential character of common recommendations, the second problem with this list, therefore, is that the useful desire to work with others is frequently unaccompanied by a clear plan of social action. Social and cultural engagement, unless reciprocated by one’s partners, will not produce partnerships that are sustainable. Cooperation is not community development because, unless communities literally ‘own’ their tasks and responsibilities, they may view their new roles as recipients of new-found attention.

services should ‘work more with these groups to learn about their needs’. Needs are identified as community deficits that need to be filled by professional services. No mention is made of the strengths and assets of communities.

Access to palliative care reimagined

Public health, community development and palliative care

In this public health framework, palliative care is everyone’s responsibility.15 This means that the sociological question of intersectionality turns away from the more traditional one-sided view of this challenge: from ‘how does one service provide a culture-sensitive service to each and every different group?’ to a more mutually responsible ‘how will each and every group create their own style and self-provision of palliative care, working in partnership with existing services?’ Highlighting mutual responsibility of reciprocity of relations shifts the implicit power assumptions behind traditional healthcare understandings of intersectionality. Rather than solely a health services problem, intersectionality then becomes a broader civic challenge for all groups; addressed only by the power of reciprocity found only in community development and partnerships approaches.

For communities and for clinical services, it is crucial that both recognise their mutual responsibilities for community developments. Community development in palliative care means communities hold roles not just as recipients but also providers of care; a health promotion approach that has also proven costeffective in other areas of healthcare.16,17 This means that future recommendations for addressing barriers to palliative care access could contain these additional health promotion recommendations.

4. Create a two-way outreach programme of communication and action; service members go out and community members come in to exchange expertise and practice wisdom.

> seeing communities as primarily places of strength, and with valuable assets, rather than places of deficiency that need services; recognising the positive role that communities can play is the foundation of the context in which palliative care is practised

7. Every clinical service to have a designated ‘diversity champion’.

Not everyone will supply clinical services but it is only one type of service offering in palliative care. Social, psychological and spiritual supports are also crucial parts of the ‘service’ that other groups can assume or partly-assume. In this way, geographic (remote and rural), institutional (prisons or homeless) or social (ethnic or sexual identities) differences can be addressed by asking not what we can offer them but what they can offer inside a partnership with us. As Dixon and colleagues rightly observe, there is indeed further scope for increasing ‘non-clinical’ provision of palliative care by communities themselves.

A requirement of a public health approach to palliative care, with community development as its main driver, is leadership from a

5. Be proactive/affirmative in the appointments process. Be creative, especially with volunteers.

> staff going ‘out’ ( joining communities)

8. Provide facilitation and support for the establishment and de velopment of new ‘services’ with and by groups who experience access barriers.

1. Affirmative action approaches to prospective employment, board membership and volunteers are essential.

For communities to develop, it is important to recognise that this is not about patients coming ‘in’ to a service but rather:

> viewing the human resource challenges for the service not merely in terms of occupational profiles but rather mutual participation; in the very core of providing the service.

Engagement is a necessary but not a sufficient condition to address barriers to access unless community engagement is a democratic process.13 The community itself must become part of the palliative care offer/provision to help regulate and mediate its own internal differences and services. This is recognised in the current national palliative care policy document, the Ambitions for palliative and end of life care report.14 Ambition six explicitly states that each community must be prepared to help and this means not merely volunteering but rather recognising that ‘everyone’ (every citizen) has a role to play. Unless community engagement evolves into community development and self-provision (changing the power dynamics), the health service might seem like a foreign or distant set of helping hands.

> communities not merely receiving but also providing the services

service that fosters civic facilitation and not solely the proffering of professional services. Palliative care, like healthcare in general, is not all about what services can and should be delivered to populations viewed as passive recipients. Healthcare is everyone’s responsibility, such as those who design and build cars, employers with safeguarding responsibilities, restaurant owners who must follow health and safety guidelines, and primary care services in dentistry, pharmacy and general practice.

Often, the suggestion to engage more with groups is a call for greater engagement with the communities who face the barriers. However, although concerns about access are expressed in terms of engagement, it is not mere engagement of community (of persons and resources) that is important in itself, rather, it is membership, composition and inclusion that are the game changers. For without visible representation, non-members can too easily assume that these services are for other people, that is, not for them. The work of Mary Lou Kelley in Canada working alongside remote indigenous populations and the work of Suresh Kumar in the development of Neighbourhood Networks in impoverished Indian populations are two clear international examples where mobilising interest in self-provision of palliative care has materialised into successful innovative examples of community provision.11,12 Both of these examples employ a partnership approach that recognises and promotes autonomy rather than viewing particular communities solely as recipients.

6. End-of-life care design, review, policy or service development to be conducted with diverse representation.

1 Gallan A, McColl-Kennedy T, Barakshina T et al. Transforming com munity well-being through patient’s lived experiences. Journal of Business Research 2019;100:376–91.

3 Marie Curie. Improving access to palliative care services for people from Black, Asian, and minority ethnic backgrounds in south east Cardiff. Marie Curie, 2014.

10 Orlovic M, Smith K, Mossialos E. Racial and ethnic differences in end-of-life care in the United States from the Health and Retirement Study (HRS). SSM Popul Health 2019;7:100331.

These themes characterise the solutions to increasing access to palliative care in the following ways:

5 Gunaratnam Y. Improving the quality of palliative care. Race Equality Foundation, 2007.

15 Kellehear A. Compassionate communities: end-of-life care as every one’s responsibility. QJM 2013;106:1071–5.

2 Public Health England. A guide to community centred approaches for health and wellbeing. Public Health England, 2015.

These above features support the World Health Organization’s Ottawa Charter for Health Promotion by strengthening community action and creating supportive environments. They are public health recommendations that can reframe the challenge of access to palliative care as a challenge to deliver a full and sustainable partnership model of health and wellbeing.

> empowering the community to develop care and support.

Conclusion

12 Kumar SK. Kerala, India: A regional community-based palliative care model. J Pain Symptom Manage 2007;33:623–7.

9 Dixon J, King D, Matosevic T, Clark M, Knapp M. Equity in the provi sion of palliative care in the UK: review of evidence. London School of Economics and Political Science, 2015.

16 Abel J, Kellehear A, Karapliagou A. Palliative care – the new essen tials. Ann Palliat Med 2018;7(Suppl 2):S3–14.

> increasing community development outside the service (recommendations 3, 4, 8 and 9)

Julian Abel, Allan Kellehear, Jason Mills and Manjula Patel

Email: allan.kellehear@uvm.edu

6 National Council for Palliative Care. Ethnicity, older people and palliative care. NCPC, 2006.

> partnering community organisations to provide care and support with a community empowerment model

4 Marie Curie. Hiding who I am: The reality of end of life care for LGBT people. Marie Curie, 2016.

> making the existing service permeable to outside groups (recommendations 1, 5 and 6)

> de-centralising the functions of the service (recommendations 2, 7 and 8)

17 O’Mara-Eves A, Brunton G, McDaid D et al. Community engage ment to reduce inequalities in health: a systematic review, metaanalysis and economic analysis. Public Health Research 2013;1.

14 National Palliative and End of Life Partnership. Ambitions for pal liative and end of life care. National Palliative and End of Life Partnership, 2020.

References

7 Calanzani N, Koffman J, Higginson IJ. Palliative and end of life care for Black, Asian and minority ethnic groups in the UK. Public Health England, 2013.

It is important to recognise that although most of the 13 earlier recommendations are self-referential, those same suggestions are important to building internal capacity and understanding within the organisation itself. The 13 suggestions made in the past complement the additional 9 described here. Past suggestions can create an organisational capital within the service that can build motivation and drive existing staff to transform the service from one that views itself as a sole provider to one that understands its cooperative function within a community of civic providers that must include all people. In this way, professional palliative care services can eventually emerge as primus inter pares (first among equals). ■

8 NHS Improving Quality. End of life care case study: Increasing the number of people from a Black, Asian, and minority ethnic (BAME) background accessing palliative care services. NHS, accessing_palliative_care_services.pdfIncreasing_the_number_of_people_from_a_BAME_background_www.nwcscnsenate.nhs.uk/files/5214/4956/7087/Case_study-2015.

Address for correspondence: Prof Allan Kellehear, College of Nursing and Health Sciences, University of Vermont, Rowell Building, 106 Carrigan Drive, Burlington, Vermont 05405, USA.

13 South J, Phillips G. Evaluating community engagement as part of the public health system. Epidemiol Community Health 2014;68:692–6.

11 Kelley ML. The evolution of the Kelley community capacity develop ment model for palliative care. Ann Palliat Med 2018;7(Suppl 1): AB014.