PositionPaper:PalliativeCare Page1CRANAplusSeptember2015EndorsedbyPalliativeCareNursesofAustraliaJanuary2016

CRANAplusPositionPaper:PalliativeCareINTRODUCTIONPalliativeCare isanapproachtocarethat improvesthequalityof lifeofpeoplefacing life-threateningorlife-limitingillness,regardlessoflocationorcaresetting.Theessenceofpalliativecareistoprovidecomfortthrough the prevention, early detection of pain, and other physical, social, psychological and spiritualneeds.Aholisticapproachisrequiredtoassisttheindividualandtheirfamiliestoadapttotheirchangingneeds,1withspecificemphasisonthepsychosocial,spiritualaspectsofdyingandbereavement.It iswell acknowledged that people living in remote and isolated areas have higher levels of illness andchronic conditions. They are often not well served by support services and specialist palliative carenetworks.Palliativecare in isolatedareas isoftendeliveredandcoordinatedbygeneralistnursesanddoctors,withminimalaccesstoapalliativecarespecialist,physiciansornursesorthearrayofalliedhealthprofessionalsthatisaffordedtopeoplereceivingendoflifecareinmorepopulatedanurbanorregionalenvironments.AboriginalandTorresStraitIslandersaccountfor2.5%ofthetotalAustralianpopulation,yetapproximately60% of the remote population, and have significantly poorer health outcomes compared with theAustralian population. Aboriginal and Torres Strait Islander people tend not to frequent palliative careservices inmainstream facilities; and there is very little data to show their admissions to palliative careservices.2Cultural respect and cultural safety are essential elements when addressing ‘end of life’ needs withAboriginal and Torres Strait Islanders, and others from different cultural backgrounds within Australia’sremote and isolated communities. The desire to die at home or on traditional homelands may be anessentialelementtotheprovisionofPalliativeCareforsomepeople.CRANAplusbelievesthatAll remote healthcare providers are guided by the Australian Palliative Care Standards3that shape theirpracticestoprovidesafe,qualitycareforindividualsandtheirfamilies.Peoplefacing life-threateningor life-limiting illnesshavearighttothecareandchoiceoftreatment,andaccesstospecialistpalliativecareservicesinput.AdvanceCarePlanningandAdvanceHealthDirectives,areanavenueforindividual’stoclearlymakeknowntheirwisheswhentheycannolongerexercisetheirrighttomakechoicesabouttheircare,orconsenttotreatment.There are many challenges for the delivery of quality palliative care services to remote and isolatedcommunities as they have limited access to: specialist investigations and treatments;medical and alliedhealthprofessionals;equipment;medications;homesupport; transportandaccommodation;andrespitecare. Inminimisingthesechallenges, residingnurses/midwives,andAboriginalandTorresStrait Islanderhealthcare practitioners/workers are pivotal in coordinating interprofessional collaboration amongstpractitioners.1NationalRuralHealthAllianceInc:PalliativeCareinRuralandRemoteAreas,FactSheet,October2012,preparedincollaborationwithPalliativeCareAustralia.2APO’Brien,MJBloomer,PMcGrath,KClarke,TMartin,MLock,TPidcock,PvanderRiet,MO’Connor:ConsideringAboriginalpalliativecaremodels:thechallengesformainstreamservices:RuralandRemoteHealthon-lineJournal,13:2339,20133PalliativeCareAustralia:StandardsforProvidingQualityPalliativeCareforallAustralians:CanberraACT:2005[4thedition]

PositionPaper:PalliativeCare Page2CRANAplusSeptember2015EndorsedbyPalliativeCareNursesofAustraliaJanuary2016

Telehealth is an expedientwayof accessing timely advice and support for staff, the individual and theirfamilies, but does not remove the requirement for remote health professionals to maintain ongoingprofessionaldevelopmentandcontemporarypracticeinpalliativeandendoflifecare.CRANAplusrecommendsthatRemote health services adopt and implement the Australian Palliative Care Standards, which guide andshapetheprovisionofpalliativecaretoindividualslivingwithalife-threateningorlife-limitingillness.

Peoplewhohavepalliativecareneedsinremoteandisolated,andrurallocationshavetherightto:• choosethelocationfortheir‘end–of-life’andhavethatchoicerespected.• accesstopalliativecarespecialistsand/orexpertsinput/consultation,iftheircareneedscannotbe

managedbytheirlocalcareteam.• accesstotimelybestevidencebasedpainandsymptommanagement.• theirpsychosocial,spiritualandbereavementneedsbeingmetinaculturallysafemanner.• haveaccesstobereavementcare,informationandsupportservicesfortheircaregiver/sandfamily.

Remote healthcare providers be required to have a sound knowledge of palliative care; Advance CarePlanning and Advance Health Directives, culturally diverse grief and bereavement needs, and painmanagementaspartoftheirtrainingandcontinuingprofessionaldevelopment.Remotehealthservicesbesupportedtodevelopthepalliativecarecapacityofnurses/midwives,AboriginalandTorresStrait Islanderhealthcarepractitioners/workers,counsellorsandotherhealthprofessionals,toprovideappropriateinformationandsupportfortheindividual,theirfamiliesandwidercommunity.

Significant resources be invested in the remote health sector to adapt existing services, or develop/linkwith new palliative care services, to ensure all remote and isolated communities receive optimal andculturallyappropriatebestevidencebasedtreatment,servicesandsupport.SmartuseoftechnologyincludingTelehealthneedstobefreelyavailabletoenableconnectivitybetweenhealthcareworkers,andbetteraccesstopalliativecareadviceandservices.CRANAplusresolvestoPromotetheimportanceof,andensureeasyaccesstoappropriatepreparationandongoingpalliativecareeducation for the remote healthworkforce. Thereby enhancing their capacity in the early detection ofpain,symptomcontrolandphysical,social,psychological,spiritualneeds.

Promote awareness of the challenges in accessing locally appropriate palliative care services to supportindividualsandtheirfamilieswhoresideinremoteandisolatedareasofAustralia.Advocateforinnovativepalliativecareservices,and/ornewmodelsofcare,includingformallinkageswithlarger regional palliative care services,which improve the quality of life for remote and isolated peoplefacinglife-threateningorlife-limitingillness.

Actively participate in consultative processes with government and non- government organisations toaddressthemanychallengesassociatedwithpeople living inremoteand isolatedcommunitiesaccessingpalliative care services; Build the palliative care capabilities of the remote and isolated workforce; andadvocatethedevelopmentofhealthpolicyandfundingthat improvesaccesstopalliativecare inremoteareas.

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STANDARDSFORPROVIDINGQUALITYPALLIATIVECAREFORALLAUSTRALIANSStandards1Care, decision-making and care planning are each based on a respect for the uniqueness of the patient, theircaregiver/sandfamily.Thepatient,theircaregiver’sandfamily’sneedswishesareacknowledgedandguidedecision-makingandcareplanning.Standard2Theholisticneedsofthepatient,theircaregiver/sandfamilyareacknowledgedintheassessmentandcareplanningprocessesandstrategiesaredevelopedtoaddressthoseneeds,inlinewiththeirwishes.Standard3Ongoing and comprehensive assessment and care planning are undertaken to meet the need and wishes of thepatient,theircaregiver/sandfamily.Standard4Careiscoordinatedtominimisetheburdenonpatient,theircaregiver/sandfamily.Standard5Theprimarycaregiver/sisprovidedwithinformation,supportandguidanceabouttheirroleaccordingtotheirneedsandwishes.Standard6Theuniqueneedsofdyingpatientsareconsidered,theircomfortmaximisedandtheirdignitypreserved.Standard7Theservicehasanappropriatephilosophy,values,culture,structureandenvironmentfortheprovisionofcompetentandcompassionatepalliativecare.Standard8Formalmechanismsareinplacetoensurethatthepatient,theircaregiver/sandfamilyhaveaccesstobereavementcare,informationandsupportservices.Standard9Communitycapacitytorespondtotheneedsofpeoplewhohavealifelimitingillness,theircaregiver/sandfamilyisbuiltthrougheffectivecollaborationandpartnerships.Standard10Accesstopalliativecareisavailableforallpeoplebasedonclinicalneedandisindependentofdiagnosis,age,culturalbackgroundorgeography.Standard11Theserviceiscommittedtoqualityimprovementandresearchinclinicalandmanagementpractices.Standard12Staffandvolunteersareappropriatelyqualifiedforthelevelofserviceofferedanddemonstrateongoingparticipationincontinuingprofessionaldevelopment.Standard13Staffandvolunteersreflectonpracticeandinitiateandmaintaineffectiveself-carestrategies.

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REFERENCESAustralianGovernmentDepartmentofHealthandAgeing(2011),GuidelinesforaPalliativeApproachforAgedCareintheCommunity Setting–Bestpracticeguidelines for theAustralian context,AustralianGovernmentDepartmentofHealthandAgeing,Canberra.AustralianNursingFederation,2102:SubmissiontoSenateCommunityAffairsCommitteeinresponsetotheInquiryintoPalliativeCareinAustraliaAPO’Brien,MJBloomer,PMcGrath,KClarke,TMartin,MLock,TPidcock,PvanderRie,MO’Connor,“ConsideringAboriginal palliative care models: the challenges for mainstream services”, Rural and Remote Health, 13: 2339.(Online)2013Accessed18/03/15,http://www.rrh.org.auAGaudet,MLKelley,AMWilliams,“Understandingthedistinctexperienceofruralinterprofessionalcollaborationindeveloping palliative care programs”, Rural and Remote Health, 14: 2711 (Online) 2014, Accessed 18/05/15,http://www.rrh.org.auB Pesut, BPHooper, CARobinson, JL Bottorff, R Swaatzky,MDAlhusien, ‘Feasibility of a rural palliative supportiveservice’,RuralandRemoteHealth:15:3116.(Online)2015Accessed18/05/15available:http://www.rrh.org.auCancerAustralia,2015:NationalAboriginalandTorresStraitIslanderCancerFramework,CancerAustralia,SurryHills,NSW.NationalRuralHealthAllianceInc.PalliativeCareinRuralandRemoteAreas,FactSheet,October2012Palliative Care Australia, Standards for Providing Quality Palliative Care for all Australians, Canberra ACT, 2005[4thedition]Accessed18/05/15,http://palliativecare.org.au/PalliativeCareAustralia,Aguidetopalliativecareservicedevelopment:Apopulationbasedapproach.2005,Canberra,ACT.Accessed30/9/2015,http://palliativecare.org.au/Quill, T.E. and A.P. Abernethy, Generalist plus Specialist Palliative Care — Creating a More Sustainable Model,NewEnglandJournalofMedicine,2013,368(13):p.1173-1175.Accessed30/9/2015http://www3.med.unipmn.it/papers/2013/NEJM/2013-03-28_nejm/nejmp1215620.pdfRESOURCESPEPA–ProgramofExperienceinPalliativeApproachhttp://www.pepaeducation.com/CareSearchhttp://www.caresearch.com.au/Caresearch/Default.aspxDecisionAssist-PalliativeCareandAdvanceCarePlanningforAgedCarehttp://www.caresearch.com.au/caresearch/tabid/2583/Default.aspxSmartPhoneApp–PalliAgedhttp://www.caresearch.com.au/caresearch/tabid/3224/Default.aspxeviQopioidcalculatorhttps://www.eviq.org.au/Login.aspx?ReturnUrl=%2fOpioidCalculator.aspx

palliAGEDnurseAppavailablefreethroughGooglePlayandtheAppleStore