Marie McInerney reported on the Australian Palliative Care Conference held in Adelaide from 6 – 8 September, 2017, for the Croakey Conference News Service. #17APCC

Croakey is a social journalism project for public health based in Australia. http://croakey.org

© 2017 Croakey | Design & Layout: Rock Lily Design www.rocklilydesign.com.au You can track Croakey’s coverage of the conference here. Contents Conference tospotlightgapsandinequitiesinpalliativecare Contents conference. Plus#17APCCselfies Wrapping some “life-changing conversations” frompalliative care Share thisintimateconversationaboutdeath, andcaring dying is told Westernised systemsofpalliative carecanbeproblematic, conference ready? theeuthanasiachallengeto palliativecarefield:Laying down areyou of life “Please don’tletthishappentome” –toomuchmedicine attheend death anddying Stunning artexhibitiongivesglimpsesofbeautyandhumanityamongst hospitals andpalliativecare Maggie Beercallsfor “revolution” inqualityoffoodagedcare, of Western medicineandwishingforalovingend Some bigquestionsaboutlifeanddeath: challenging “conveyer belt” “wounded healer” Working withdifferenceingriefandloss: insightsfroma questions tokickoff#17APCC What songwouldyoulikeatyourfuneral? And otherdeath-changing ...... #17APCC ......

80 75 70 62 52 48 40 29 22 10 3 2 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities Croakey inthelead-uptoAustralianPalliativeCare Conference inAdelaide. “It’s whathappensallthe time,witheveryinterviewIdo,politiciangoandsee,”shetells Callaghan wheneuthanasiaisnothighontheagenda. It’s arare mediaintervieworpoliticalmeetingfor Palliative Care Australia’s chiefexecutiveLiz writes: Marie McInerney costly, traumaticandinefficient” hospitalcare instead. Productivity isexposingvulnerablepatientsandtheirfamiliesto“ridiculous, Commission warns Among theprioritiesisalackofadequatepalliativecare supportinagedcare services,which the boost “deathliteracy”. “foundational” policyreviews underwaythrough tograssroots innovationslikeDeathCafesto in palliativecare beyondthemomentumtowards voluntaryeuthanasiainAustralia–from outlinesinthestorybelow, MarieMcInerney But, asjournalist there ismuchelseontheagenda psychosocial andspiritual. their families,through theprevention andrelief ofsufferingandpainotherproblems, physical, Health Organisation aimstoimprove thequalityoflifepatientswiththreatening illness,and The dramaticshiftposesimportantquestionsforpalliative care which,according totheWorld is expectedtofollowwithsimilarlegislation. or medicalconditiontobeableseekamedicallyassisteddeathfrom 2019.NewSouthWales Victoria looksontrackto allow peoplesufferingwithanadvancedandincurableillness,disease biennial AustralianPalliativeCare Conference inAdelaide. Implications ofthelikelyintroduction ofvoluntaryeuthanasiainAustraliawillbeafocusatthe care Conference tospotlightgapsandinequitiesinpalliative #17APCC  http://bit.ly/2wAz6oa 3 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities and hospitals,initsdraftreport onhumanservicesreform. But inJuneitshoneabrightlightonfailures andinequities inthesystem,particularlyagedcare consideration. 12 months–muchlesstosaythatthefunds be savedonbettercare shouldnotbethemajor end oflifeorpalliativecare –definedasservicesforpeople whoare likelytodiewithin thenext Few mighthavepredicted theProductivity Commissionas theagencytohighlightbiggapsin Heart-breaking gaps processes. Palliative Care forallAustralians.Conference delegateswill beaskedtofeedintoboth Palliative Care Australiaisalsoconductingareview oftheStandards forProviding Quality Well attheEndofLifenowbeingupdated. Federal Government’s NationalPalliativeCare Strategy2010 –SupportingAustralianstoLive All thiscomesatatimeof“foundational”changesinthepalliativecare policylandscape,withthe and otherreasons –onproper accesstopalliativecare services. and forthosegroups whoare currently missingout–forcultural,geographic,socio-economic That isparticularlyimportantforthosewhoare currently “dying poorly”inresidential agedcare end oflifeneedsandwishes. will notchooseassisteddeathbutneedapalliativecare servicesystemthatcanrespond to their But shesaidthere are manyotherimportantissuestoconsiderforthemajorityofAustralianswho “It willbereally goodforthesectortobeengagedin thatdiscussion.” emotional subject,”Callaghansaid. death isstillillegalacross thecountry, andthere are lotsofdiverse views,(around a)complexand “We wanttoexplore thisinasafeenvironment, whileacknowledgingthatvoluntaryassisted objectors through toquestionsofliabilitieswhenthere are “unintendedconsequences”. in, from whathappenstopractitionerswhoare conscientious implications forthesectorifandwhenthesenewlawscome a panel discussion to explore the ‘complex, difficult and emotional” One oftheplenarysessionsatthree-day biennialeventwillbe Territory’sthe Northern lawswere in 1997. overturned voluntary assisteddeath,oreuthanasiaasitisalsoknown,since Wales andVictoria tobecomethefirstjurisdictionslegalise 800 delegatesatthisyear’s conference, withmovesinNew South But Callaghansaysassisteddyingwillrightlybeabigfocusforthe a wholerangeofthings.” and symptommanagement,aboutunfinishedbusiness–it’s about psychosocial support,spiritualaboutreally exquisitepain “It’s aboutcare ofthewholeperson,family, it’s about allowed todie,”shesays.“Bothofwhichare wrong.” “Some peoplethinkpalliativecare iseuthanasia,othersthinkpalliativecare (means)you’re never #17APCC 4 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities the peoplewhocare forthem.” It said:“Someagedcare residents dieinunnecessarypain causingdistress tothemselves and surroundings thatare familiar to them.” “traumatic (andcostly)tripstohospitalreceive medicalcare thatcouldhavebeenprovided in palliative care expertiseandqualifiedstafftoadministerpain reliefmeans residents oftenmake It reported thatwhilefouroutoffive residents ofagedcare facilitiesdieinthem,alackof residential agedcare isgenerally“illequipped”tomeetend oflifecare needs. And inwhatwillbeanotherimportantfocusattheconference, theCommissionfoundthat • • • • It foundthat:

live. with illnessesotherthancancer, andbecauseaccessis too oftendeterminedbywhere they demand forcommunitybasedpalliativecare wouldfarexceedavailability, particularlyforthose About 70percentofAustralianswouldprefer todieathomebutfeware abletodosobecause them. to theirpreferences, andsometimesreceive medicalinterventionsthatare notbeneficialto People approaching the end of life in hospitals can find it hard to access care that is responsive aged care —twooftheleastpreferred placestodie. More than80,000Australiansdieinhospitalseachyearandabout60,000residential world, butonlyasmallproportion ofthe160,000peoplewhodieeachyearreceive suchcare. The quality, availabilityandaffordability ofendlifecare inAustraliaisamongthebest #17APCC 5 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities planning. paediatric palliativecare, education,therole ofthearts,clinicalpractice,andadvancedcare end-stage kidneydiseaseandchronic obstructivepulmonarydisease,newtechnology, telehealth, Concurrent sessionswilllookatpalliativecare developmentsforpeoplewithmotorneurone, use ofmedicinalcannabisandon“clinicallyfutile” treatment. Other plenaryandkeynotesessionswillfocuson painandsymptommanagement,includingthe therapist LieseGroot-Alberts andAustralianchefMaggieBeeron‘creating anappetiteforlife’. who describeshismissionasto“unleashapandemicofhealth”,NewZealandbasedgrief Keynote speakersattheconference includeCanadianphysicianandacademic DrAlexJadad, Leah Kaminsky, authorofTheWaiting Room. featuring “TheDeathtalker”MollyCarlile,Groundswell Project director KerrieNoonanand Dr like deathcafes,doulasandagrowing movement around naturalburialsinasession It aimstocapture someoftheexcitinggrassroots workgoingontopromote “deathliteracy” both “topdownandbottomup”approaches topalliativecare reform. With thetheme‘connectingwithcommunity’,NationalPalliativeCare Conference willurge Driving ‘bottomup’change A plenarysessionattheconference onFridaywillexaminetheissue. Roadmap, whichastoundinglydoesnotmentioneitherendoflifecare orpalliativecare. Meanwhile thePCAisdraftinganewchapterforFederalGovernment’s services (seeimageatthebottomofpost). It’s alsodeveloped10questionsforpatientsandtheirfamiliesorcarers toaskofagedcare care providers. principles, withtheoverridingmessagethatpalliativecare “isabsolutelycore business”foraged In response, PalliativeCare Australiaandotherpeakbodieshaveproduced asetofguiding care andonly1in1,000agedcare patientencounterswithGPswaspalliativecare-related. It alsofoundthatonlyfourpercentofresidents inagedcare hadaformalappraisalforpalliative during theirfinalhospitalisation. that lessthanhalfofthe77,000peoplewhodiedinhospital2014-15received palliativecare Australia from theNationalCentre forSocialandEconomicModelling(NATSEM) thisyearfound Lack ofdataisabigissueforthesector, butresearch analysiscommissionedbyPalliativeCare It concludesthat: This isnotacceptable.” to hospitalwiththeconfusion,lossofdignityandcontrolthatcomesit. Their endoflifejourneywilllikelybepunctuatedwithavoidable,orunwanted,admissions place, thatdoesnotreflecttheirvaluesorchoices. Without significant policyreform,tensofthousandspeoplewilldieinaway, andina #17APCC Aged Care 6 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities respond withtheseservicemodels’.” trying tocreate amovementinthecommunitytosay‘thisiscare wewant,youneedto The aimisto“takeapublichealthapproach topalliativecare: communitydriven,bottomup, care,” Callaghansaid. community, whetherthat’s through technologyorresearch orexploringinnovativemodelsof “Overall we’re tryingtobuildconnectionswithcommunityandwaysintegratecare inour Generations. Islander people,where there isgrowing abouttheneedsofageingStolen concern A numberofsessionswilllookatculturalissuesparticularlyforAboriginalandTorres Strait #17APCC 7 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities Read more abouttheexhibition #17APCC tweetshavebegun here. #17APCC 8 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities Adelaide, Distinguishingsadnessanddepression atend-of-life. and palliativecare, includingthisstorywithProfessor Gregory Crawford from theUniversityof Palliative Care Australia’s PalliativeMatterswebsiteforexcellentstoriesaboutliving,dying Further reading #17APCC 9 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? someone closetouswho haddied. First everyonegathered inlittlegroups, andwewere invitedto“bring alovedonetothetable”, event. These were notthepoliteandoftenstiltedconversationsofyourusualpre-conference drinks writes: Marie McInerney The exercise illustratedthepowerofconversationinimproving endoflifeexperiences. Palliative Care Conference countryinAdelaide. onKaurna #DeathOverDrinks eventinAdelaideonTuesday night,aheadoftheopeningAustralian These andothersuchquestionsaboutdeathdyingwere askedofparticipantsduringa Who doyouwantbyyoursidewhendie? death-changing questionstokickoff#17APCC What songwouldyoulikeatyourfuneral? And other Conversation -apowerfulintervention #17APCC

 http://bit.ly/2vKl6LL 10 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #DeathOverDinner lastyear. Deakin University’s FacultyofHealth,whowasinstrumentalinthelaunchAustralian led byRebeccaBartel,nowExecutiveLeadattheInstituteforHealthcare Transformation at It wasanaptandeffectivecurtainraiserfortheNationalPalliativeCare Conference. Itwas end oflifeplans,intheknowledgethatitcanhelptobringagooddeath. United StatesbychefMichaelHebbtoencouragepeopletalktheirlovedonesabout The Deakin#DeathOverDrinksisavariationof#DeathOverDinner, amovementlaunchedinthe Who doyouwantwithwhendie? How wouldyouliketodie? Other thanpain,whatscares youmostaboutdying? Who wouldyoucallifonlyhadonemore calltomake? Where wouldyouliketodie? Then thequestionsgotalittletougher. hopeful StayingAlivebytheBeeGees. The night’s playlistincludedLeonard Cohen’s Hallelujahofcourse,AmazingGrace,andtheever- The questionsbeganabitlightly:Whatmusicorsongwouldyoulikeplayedatyourfuneral? parents, partners,friendsandotherimportantlosses. Colleagues andstrangerstoastedeachone,manytearingupasgroups liftedtheirglassesto #17APCC 11 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? Croakey. wanted andshediedareally textbookhorribledeath.Anditreally hauntedme,”shelatertold “She wasshuffledinandoutofhospital,neveroffered anypalliative care, neveraskedwhatshe a lotoffutilemedicaltreatment”. Diagnosed withacutemyeloidleukaemia,Bartel’s motherunderwent“toomanyrounds ofchemo, But this“glamorous, amazingwomanjusthadareally terribledeath,”shetolddelegates. Patsy from AbFab(Absolutely Fabulous).” “She waspretty fabulous,” shesays.“Very Sydney, veryDoubleBay, onagooddayshewaslike Bartel openedtheeventbyintroducing hermum,Jan,through aseriesofphotos. #17APCC 12 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? “Unfortunately nowdeathissomedicalisedandinstitutionalisedthatit’s thedefault,”Bartelsaid. resuscitated orgivenfutile treatments whethertheywantthemornot. Most doctorstrytodotheirbest,shesays,butmanypeoplegetcaughtupinthesystem,often age, diagnosisandgeography, ratherthanindividualneed. That’s notalwayswithintheindividualperson’s control, with accesstocare largely determinedby the servicestheyactuallyget(acutecare)”. a “significantmismatchbetweenwhatpeoplemostoftensaytheywant(supportiveservices)and Most, shesays,willdieinacare institution,suchasahospitalintensivecare unit,where there is according toherpaper, Conversations:Creating ChoiceinEndofLifeCare . Around 70percentofAustralians wouldprefer todieathomebutlessthan20percentdo, loved onesare leftfeelingbereaved, guilty, anduncertain. Sadly, Bartelsays,toomanypeopledieinamannertheywouldnotchoose andtoomanyoftheir said. likely dieathomenotsurrounded bydoctorsandmachines,theirfamiliesdon’t suffer,” she “When peoplehaveendoflifeconversations,theyactuallygetmuchbettercare, theyare more – notintheintensivecare unitwhenit’s toolate”. – thatis,conversationsoverfundamentalchoices“withfamilyandlovedonesatthekitchentable The answerwasendoflifeconversationswithlovedones,intimetoinfluencehowdeathcomes one intervention,whatwouldmakethedifference”? research project onendoflifecare thatexaminedtheevidencetoinvestigate,“ifwecouldmake Working asexecutivedirector oftheAustralianCentre ofHealthResearch, sheleda“deepdive” of peoplewithnohealthbackground? She thought if she couldn’t make things better for a loved one, then what would be the experience worked inarangeofhealthorganisations. Bartel comesfrom amedicalfamilythatincludesGPsandprofessors ofmedicine,andhas #17APCC 13 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? Watch thisinterviewwithRebeccaBartel Find outmore: family anddoctorsdieontheirownterms.” by family, it’s aboutgivingthemthetoolsandprocesses sotheycanhaveconversationswith Bartel says“It’s ultimatelyaboutpeopletakingcontrol… Iftheywanttodieathome,surrounded at privatehomesseekingtoencouragepeopletakemore control overhowtheirliveswillend. But theseconversationsare alsobeinghostedinagedcare homes,Indigenouscommunities,and There wasalmosta#DeathOverDinneronTheBachelor, Bartellaughs. Michael Hebb,broadcast onABCTV’s Lateline. comedian DeniseScott,writerAlexLee,andintensivecare specialistNeilOrford withUSfounder One highprofile DeathOverDinnerbrought togetheractorsMichaelCatonandNakkiahLui, Ben Leeandahostofmedicalheavyweights. ambassadors whoincludemedialeaderAriannaHuffington(HuffingtonPostfounder),musician In Australia,Bartelsaysithasstartedoffsmallbutwithbigbacking,alistofinfluential a mealanddiscussendoflife,helpedshiftpolicyfundingforadvancecare conversations. Death OverDinnerintheUSclaimstohaveinspired more thanhalfamillionpeopletositdown www.deathoverdinner.org.au #17APCC 14 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? Tweets andselfiesfrom thefirstdayofconference https://www.youtube.com/watch?v=4DT0aMfFtuw Also watchMichaelHebb’s TEDMEDtalks:Whathappenswhendeathiswhat’s fordinner? Watch thesevoxpopsonfuneralsongs #17APCC 15 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #17APCC 16 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #17APCC 17 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #17APCC 18 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #17APCC 19 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? #17APCC 20 You can track Croakey’s coverage of the conference here. off #17APCC off And otherdeath-changing questions tokick What song would you like at your funeral? Opening video #17APCC

21 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief This report isbaseduponaninterviewwithGroot-Alberts aheadofherpresentation. workplaces andcommunities. says hermainpassionisin“workingwithdifference” –across cultures, aswellinfamilies, A keynotespeakeratthisweek’s AustralianPalliativeCare Conference inAdelaide,Groot-Alberts as shedescribesherself. Pacific sincethesuddendeathofheryoungdaughter ledhertobecominga“woundedhealer”, worked withHolocaustandmajordisastersurvivors andmanycommunitiesacross theAsia This isachallengeposedbyNewZealand-basedgriefspecialistLieseGroot-Alberts, who has experience healingratherthan“newhurts”duringdeathanddying? Strait Islanderpeople,canaccessthepalliativecare andgriefsupporttheyneedsothat How dowemakesure thatallcommunitiesinAustralia, includingAboriginalandTorres “wounded healer” Working withdifferenceingriefandloss: insightsfroma Keynote speakerLieseGroot-Alberts talked about theimportanceofself-awareness and reflection practicestoongoingpersonalandprofessional development #17APCC  http://bit.ly/2vOdV5e

22 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief those differences, “creating newhurts,insteadofhealing”. and loss,totheissues thatarisewhenoneculture orgroup doesnotrecognise and honour It’s brought herupcloseto different experiencesandexpressions around deathanddying,grief Holocaust andtsunamisurvivors–inEurope, Asia,thePacific,andAfrica. people withterminalillnessesandthoseaffected byloss,traumaandgrief–amongthem Since thenGroot-Alberts hasbeenteachinghealth-care professionals aswellworkingwith On DeathandDying,whichoutlinedhertheoryofthefivestages grief. psychiatrist whowasapioneerinendoflifestudies andtheauthorofgroundbreaking book Groot-Alberts wentontoworkwithandforDrElisabethKübler-Ross, theSwiss-American Building bridges,notsilos “In thatway, I’mawoundedhealer. Ithinkmostofusare,” shesays. for her, deathhasendedalifebutnotrelationship. her daughter’s losshasmeanttoher, howit’s notsomethingshewillever“getover”,abouthow, In herworkshops,inwritingandconversation,shetalksfreely anddeliberatelyabout what to dealwithhergriefinownwayandmakepain“aschool,notaprison”. But itdidn’t workoutthatway, out.Overtime,Groot-Albertsthatsheneeded andsheburnt learnt feel muchbettermyself,”shetoldCroakey. She threw herselfintowork, becomingatherapistandthinking,“ifIcanfixeveryoneelse,thenI’ll time asneedingtoacknowledgesuchsharploss.“Ididn’t either,” shesays. Friends andacquaintancesdidn’t knowhowtorespond tothebirthofanewbabyatsame She describesatimeofpolaremotions:“Hopeanddespair atthesametime,andpainjoy”. old daughterNana,twodaysafterhersonAikowasborn. with hergrandparents, marrying,andthensuffering thedevastatinglossofhernearlythree years Groot-Alberts inFrieslandtheNetherlands,growing talksofbeingborn upinherearlyyears It wasawake-upcall,andnowshetellsherownstoryfirst,onesteepedindeeploss. belong toandwhere are youfrom?” “You askmetoreveal myselfwhileIdon’t knowanythingaboutyou:whoyouare, whodoyou she quotesthemassaying: articletitledThelamentofabroken andgrievingindifferentIn ajournal heart:mourning cultures, themselves toher, whentheydidn’t knowwhoshewas. Maori participantsintheroom challengedthesequence,askinghowcouldtheyintroduce introductions. to introduce themselvesbefore thefacilitators,whothenmadetheirownmore in-depth As wasthewidelyacceptedpracticeadoptedfrom aUSmodel,participantswere asked 1980s. “life, deathandtransition”soonaftersheemigratedfrom theNetherlandstoNewZealandin griefspecialistLieseGroot-AlbertsInternational recalls workingas afacilitatoratworkshopon writes: Marie McInerney #17APCC 23 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief biased thinkingandawillingness andopennesstobecuriousabouttheother.” into theculture aboutanother culture. Itisaboutwakingup to allthat,becomingaware ofour “(It’s about)beingaware ofthejudgmentsandstereotypes and dogmaticthinkingthathascome “What isimportanttobeaware thatmyexperienceisnotyourexperience. continuing personalandprofessional development.Shesays: The lessonforherwasself-awareness andreflection practicestobe“anessential part”of response, soingrained…ThewholetimeIsatonthegrave,mybodykept screaming “getoff!”.” remembers. “ItwaslikeIheard allmyancestorsyelling‘Don’t youdare!’ Itwasatotalbody Her reaction, asshewenttojointheSamoanmotherongrave,wasalmost visceral,she from “toneversteponagrave,thatwassotaboo”. anearlyageshelearnt Groot-Alberts admitstoit beingatotalshocktoherownupbringing,intheNetherlands,where grave, toshowhertheirindividualheadstonesandsittalk,forsometime. After theceremony, themotherofthree beckonedthetherapistovertojoinhersitting onthe of herchildren. Theywere allburiedtogether, inonebiggrave,onfamilyland. One extendedfamilysheworkedwithlost14members,andincludedamotherwhoallthree including manychildren. working inSamoaafterthe2009earthquaketriggered atsunamiinwhichnearly200peopledied, She givesapersonalexampleofhowingrainedherowncustomsandbeliefswere whenshe was that canplayoutinfearorjudgmentsofanythingdifferent. loss istobemore aware oftheirownbeliefswhenworkingcross-culturally, andtobeaware how Groot-Alberts saysthechallenge forpalliativecare practitioners andothersdealingwithgrief ‘My experienceisnotyourexperience’ Foundation, includingitsreport markingthe20thanniversaryofBringingThem Homereport. Their needfortraumainformedagedcare hasbeenhighlightedinrecent reports bytheHealing the StolenGenerations. Australia CEOLizCallaghan,whoseesparticularissuesemerging forthenowageingmembersof Some oftheworkbeingdoneinpalliativecare remainssaysPalliativeCare “abitpaternalist”, backgrounds andforAboriginalTorres StraitIslanderpeople,includinginremote regions. focused ontheexperiencesofendlifecare forpeoplefrom culturallyandlinguisticallydiverse It’s animportantissueinAustraliaandoneexplored inanumberofconference sessions bridges, especiallyingriefandloss?” connect togetherandhowcanwemakesure thatwedon’t create silos?Howcanwebuildthose “My mainpassionhasbeenforalongtimeinworkingwithdifference,” shesays.“Howcanwe individual, isthecentralfocus. of transplantingWestern palliativecare modelsontocultures where thecommunity, notthe Groot-Alberts haswrittenofrepeatedly encounteringinAfrica,AsiaandPacificthepractice honour difference”. Forsomeitcanrisk“psychologicalcolonisation”alloveragain. cultures, butit’s particularlyanissue,shesays,where mainstream culture ororthodoxy“failsto Those differences canbeseenacross families,workplacesandcommunities,ofcoursewithin #17APCC 24 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief Conference tweets present andtrulyconnected,” shesaid. “It taughtmetoneverunderestimate thehealingthatcanhappeninaverylimited time,ifwestay short timeineverybusyshifttogivehimherfullattentionandletknowhemattered toher. The difference, shesaid,wasthathehadbondedwithoneofhisnurseswhomadesure totakea But one15-year-old boywhohadalsobeenleftalonebyfamilywasin“verygoodspirits”. families were tooscared ofinfectiontohelp. There was,shesaid,terribledepression, hopelessnessanddespairamongthosepatientswhose often 100patientsandwhere familieswere countedontohelpwithcare. the Philippines,whichwasunderstaffedandunder-resourced, with50bedsinthemen’s ward and She describeshowthatwasbeautifullyputintoactioninthepulmonaryTBward ofahospitalin models. listening andcuriosity”tobeablefacilitateaperson’s healing,ratherthantofollowprescriptive articleabouttheneedtobeinaspaceof“openness,awareness,She talksinherjournal silence, both ofusthananhourortwohourshalfdistractedandhalfdisconnected,”shesays. “When wecanbetotallypresent withaperson,thenattimesfiveminutesare awholelotmore for neither linearnoraboutquantitybutquality. time tohonourtheneedsofeachpatientandfamily, Groot-Alberts saysshethinksoftimeas Asked howdifficultitisforpalliativecare practitionersandotherhealth professionals totakethe #17APCC 25 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief #17APCC 26 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief #17APCC 27 You can track Croakey’s coverage of the conference here. insights from a“wounded healer” andloss: Working withdifference ingrief #17APCC 28 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: Toronto. Institute forGlobalHealth EquityandInnovationatthe University of provocative keynoteaddress byDrAlexJadad , Professor atthe Care Conference inAdelaidethisweek,apowerfuland These were someofthechallengesputtoAustralianPalliative And whenwetalkabout‘gooddeaths’,whatdo wemean? Does humanityitselfneedpalliativecare inanerawhere theplanet’s healthisincrisis? environmental injustice,andfemaleinfanticide? hospitals, homesandhospicestochallengethe staggeringnumberofdeathscausedbyhunger, Is palliativecare failingitsmission ifitdoesn’t gofarbeyondsupportingthosedyinginour medical interventions,bepursuedinthecourtsasviolationsofhumanrights? Should “baddeaths”,where peoplesufferunnecessarypainanddistress orneedlessandharmful writes: Marie McInerney loving end “conveyer belt” of Western medicineandwishingfora Some bigquestionsaboutlifeanddeath: challenging Challenging theparadigmofpalliativecare... #17APCC  Professor AlexJadad http://bit.ly/2f8U329 29 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: regulationsgovernment makeitdifficulttoaccesspainkillers.Hesaid: vets getthree timesthetrainingonpainmanagementthandoctorsornurses,elsewhere where A “hugeproportion” are dying unnecessarilyinpaincountrieslikeCanadaandAustralia,where aged care facilitieswhenthesamenumberwouldliketodieathome. Around theworld,hesaid,about80percent ofpeopleare dyingininstitutionslike hospitalsand treatment ofpeopleinthefinalhoursordaystheirlives. forcontinuing poor he saidtheyshouldconsiderwhether rightlysuegovernments While hedidn’t expecthealthprofessionals tomarch offtocourtorTheHague, governments In hiskeynote,Jadadproposed that“abaddeathbeconsidered aviolationofhumanrights”. He quotedleadingUSgeriatricianJamesGoodwin,whosaid: me’, soit’s extraordinary thatwe’re doingittootherpeople,”Hillmansaid. “Hardly award round goesbythatoneofourteamdoesn’t say‘pleasedon’t letthishappento treated andfacedeathwithout dignity. into intensivecare unitsinthelastfewweeksoftheir lives,where theyare more likelytobeover- Hillman despaired ofa“conveyerbelt”thatispouring frail,elderlypeoplewithmultipleproblems to theEnd’,ontakingcontrol through ofourinevitablejourney ageinganddeath. Intensive Care atLiverpoolHospitalinSydney, whohasrecently publishedabook,‘AGoodLife The result echoedaconference discussiononWednesday ledbyKen Hillman,Professor of The finalassault “Wow,” hesaid.“Icouldstophere.” Just fourdid. your patientsare now. Raise yourhand,heinvitedthe800delegatesinconventionhall,ifyouwouldliketodieas from thefloor, Jadaddidaquickpoll. As heroamed thestageforanhourduringhiskeynote,invitingquestions,commentandcoaching yourselves!” hesaid.“Ithinkweneedtobeembarrassed.” “If webrought someonehere from 100yearsago,theywouldsay‘Whathaveyoudoneto death. Western nationsthatare losingcommunityconnections,separatingbodyfrom soul,andfearfulof rate intheColombianregion where hisdaughterlivesandhelpedbreed a“mythofimmortality”in He despaired atthe“over-medicalisation ofeverything”thathasledtoan80percent Caesarean give birth–“unexpectedlywithbare hands”–inthecorridorofabuilding. event, describingingloriousandgorydetailhowlastmonthhehelpedhis25-year-old daughter physicianandeducatorhadalreadyThe Colombian-born madeasplashatanearlierconference nice andwehavebecome accomplicesmostofthetime. I’m notsayingweshould doit(gotocourt)butI’mwondering,becauseIthinkweare too overtreatment of80-year-olds bordersonassault. Overtreatment of50-year-olds ismostlyamatterofinconvenience andwaste,whereas #17APCC 30 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: involved here complicitytoallowthishappen.” andalotofgovernment “What dowewiththis?” heaskeddelegates.“What’s ourrole, andthere’s alotofgreed than 100diseasesandinjuries. exposures, climatechange,andultravioletradiationwhichtheWHOsays Nearly 13millionare linkedtothe environment, through air, waterandsoilpollution,chemical about death? What wouldhappen,heasked,ifwelookedthrough adifferent lens,andlookedat other datasets with alabelgivenbymedicine.” conditions, describingitas“oneofthegreatest expressions ofmedicalisationdeath.We die 56 millionpeoplewhodiedworldwidein2015,ledbyheartdisease,stroke, andlowerrespiratory He showedaslidewiththeWorld HealthOrganisation’s listofthetoptencausesdeath globally aboutitsconceptofa‘baddeath’. Just aspowerfulwasJadad’s challengetothehealthandpalliativecare sectortothinkmore Broaden thediscussions aboutdeath support.” I’m goingtodealwiththiscaseinfrontofme,orthecommunitythatIhavecommitted What happensifwestartthinkinginthose(humanrightsviolations)termsinsteadofhow perverse incentivesunderwhichIoperate’…. We keepwitnessingbaddeaths,(andweblame)‘thesystem’,government’, #17APCC contribute tomore 31 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: to deliverthatandwhydoesn’t italready happen? He saysthatraisesanumber ofquestions:suchaswhydoweneedaspecialised healthsystem family around me. The mainresponses were: todie inmyplaceofchoice,receive painrelief, andhave friendsand asked: howwouldyouliketodie? Jadad tolddelegatesthatasurveyofhealthcare workersinanetworkofColombianfacilities has Aspirations foragooddeath (Access tothearticle,Doeshumanityneedpalliative care, canberequested via poverty are really onlysymptomsthatour“humanworldisterminallysick”.Itsaysoftheworld: Co-authored withCanadianProfessor MurrayEnkin,thearticleaskswhetherhunger, diseaseand European ofPalliativeCare, Journal afteritwasknockedbackbymanyotherjournals. These questionsare theunderlyingfocusofa(paywalled) articleherecently publishedinthe And thenwhatoftherenewed nuclearthreat? Hesaid: how toadvocatechangegovernments? as muchfindingouthowto relieve pain,orimproving theefficienciesoftheirteam,tolearning Should thattrouble palliativecare professionals whentheycometoconferences, heasked,just the worldsimplybecausetheyare girls. millions ofgirlswhoare killed,aborted,andabandonedinIndia,Chinamanyotherpartsof He pointedtoa2012documentary‘It’s agirl’–“thethree deadliestwords intheworld”–about And whatofthosemillionswhodiethrough medicalerror? “Is thatpartofourscope?”heasked. murder.” Rapporteur ontherighttofoodasdeclaringin2002:“Anyonedyingfrom hungerwasdyingfrom “Isn’t thatabaddeathcanbeprevented?” heasked,quotingformerUnitedNationsSpecial abundance offood,hesaid. Eight milliondieeachyearofhunger, including21,000children everyday, inaworld withan What ifitistimetothinkofpalliativecareforourcollectivehumanity?” when cureisbeyondreach. We havereluctantlycometoacceptourindividualmortalityandembracepalliativecare to thepoliticiansarounduswhenworldisfallingapartus?” we need,howmanybedsdoarenursesvaluedenough?Howcanadvocate What arewedoing,(arewe)lookingatournavels,(asking)howmanymilligramsofthisdo how toavoidbaddeathsitisus. If thereisonegroupofpeoplethathaslegitimacytotalkaboutdeathandgood kind ofprovisionsarewemaking(aboutthat),whatstatementsissuing? We arethepeoplewhoknowmoreaboutdeathanddyingthananyoneinworld.What #17APCC ResearchGate.) 32 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: There’s muchmore towatchandconsider. whimper, todiehappy, healthandinlove? What if,hesaid,wewere abletoviewdeathasawork ofart,togooutwithabanginstead need toexperiencewhateverthedayisgoingshowmeinmostintenseway, withoutfear.” music isnowsetashisalarm,“soIremember, whenIwakeup,thatcouldhavebeendead,and At his‘funeral’,theyclosedthecasketandcarriedhimoff,withfuneralmusicplaying.That about hurtingeachother.” his wifeandchildren, dealingwith“alotofissuesin a veryexplicitway, dealingwithourfears apology topeoplehehadhurt,thankedthosewhohelpedhim,andspentintensetimewith In hispracticerun,inaneffortto remove fearand regret from hislastdays,Jadadsentlettersof much closercouldwegettoenablingeveryoneintheworldexperienceagooddeath?”. He wantedtoconsiderwhatpalliativecare mightlooklikeifwehadnofearaboutdying:“how funeral andreceiving acoffinassurprisegift from hisfamily. Jadad certainlyhas,andheputsomeintopracticeforhis50thbirthday, “curating”hisown of ourlife?” But itbeggedabiggerquestionforhim:“Shouldwehavehigheraspirationsthebiggestevent viewed deathasaworkofart?That’s a conversationIhopewecanhave.” What ifwediedinstyle,onourownterms,and weenabledeachothertodoit?Whatif music, greatfood,massage,smoothieswithopioids, andpoetry? How aboutaninstitutionforcreativedying,ahospital fordelightfuldying…howabout #17APCC 33 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: Presentation byProfessor AlexJadad The viewsfrom Twitter Watch hisfullpresentation at this link. #17APCC 34 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: #17APCC 35 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: #17APCC 36 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: #17APCC 37 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: #17APCC 38 You can track Croakey’s coverage of the conference here. medicine andwishingfor aloving end Westernchallenging “conveyer belt”of Some bigquestions about life anddeath: Presentation byProfessor KenHillman #17APCC 39 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in have toeatit. those whohavetocook andserveit,thosewho good andaren’t goodforyouisaninsultbothto enjoyment, sotoservemealsthatdon’t tasteorlook over whichwegettoexercise choice andreceive Food is,shesays,oneofthelastthingsinourlives can takeprideandjoyintheirwork. residents lookforward tomeals, andcookschef to servefood“fullofflavourandnutrients”,where Beer isonamissiontoencourageagedcare homes One ofAustralia’s bestknownfoodpersonalities, in akeynotespeechtotheAustralianPalliativeCare Conference . “Food ismedicine,thefueloflife.It’s whatfires ourappetiteforlife,nomatterwhatage,”shesaid taste ofmouthswabsfordyingpatientswhocannolongerswallow. to theveryendoflife–from themealsservedinagedcare homesandhospitalsthrough tothe Australian chefandfoodguruMaggieBeerisdeterminedthatcanmustbeapleasure writes: Marie McInerney aged care, hospitalsandpalliativecare Maggie Beercallsfor “revolution” inqualityoffood Maggie BeerwithDrJaneFischer, thepresident ofPalliativeCare Australia #17APCC

Maggie Beer  http://bit.ly/2fclWGr 40 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in Her address totheCEOsdid notgodownwell. good, somebad,andverybad. executive officersofagedcare facilities.In preparation, shevisitedmanyfacilities,findingsome One ofthe700speakinginvitationsshereceived thatyearwastoaconference for1,000chief was appointedSeniorAustralianoftheYear in 2010. point”,shesays,camewhen Beer haslongbeenachampionofgoodfood,but her“turning Who are thechampions? She said: chefs are hamstrungbymanagement, andresidents oftenare reluctant tospeakup. protest actionfrom adelegate’s 82-year-old aunt,Beerurged more uprisings,sayingcooksand Hearing aboutonefacilitythatservedwhitetoastandtomatoesfordinnernight,prompting my list,”shepromised. Beer acceptedthechallengewithalacrity, confessingshehadnotthoughtofthatbefore. “It’s on delightful?” sheasked. “Given theseare thelastthingsthatmanypeopletaste, canyoucomeupwithsomething hydration products usedformanydyingpatientsintheir finaldaysorhours. of hermotherHazelHawke,urged Beertodosomethingaboutthe“bloodydreadful” mouth Sue Pieters-Hawke,whohasbecomeanAlzheimer’s Australia ambassadorfollowingthedeath wall andintothestomachtobypassmouthoesophagus. fed through apercutaneous endoscopicgastrostomy (PEG)tubeplacedthrough theabdominal Then there are thebiggerchallenges,amongthemwhatmightbepossibleforpatientswhoare blacklists forbringingintheirownhome-cookedfood. inflexible eatinghoursforthoseundergoing treatments thataffecttheirappetite,andoffamilieson Delegates talkedoftasteless,overcooked mushservedtothosewhocannolongerchew, of community palliativecare, aswellhavingtheirownrelatives incare. floor attheconference, packedwithhealthprofessionals workinginagedcare, hospitals andin She maynotfocusonthenegatives,buttheycamethrough loudandclearinquestionsfrom the chew orswallow. fostering innovationinrecipes andinmakinggoodfoodavailabletothosewhocannolonger which sheestablishedin2014withthemotto‘Creating anappetiteforlife’,showcasingand Beer isdeliberatelypositiveinherspeechandonthewebsiteof a bearingonwellbeing.” “We needequalmeasures ofpleasure andnutrition(from ourfood),”shesays.“Pleasure hassuch just agedcare, buthospitals,organisations, schools,mentalhealthfacilities,”shesaid. “You mightthinkitautopianidealbutthere isnoplaceforinstitutionalisedfoodanywhere, not [Revolts] givethecookandchefsomethingto workwith,evenifit’s toshame theCEO.” that they’renotdemandingpeople,accepting. The revoltsarereallyimportant.Alotofresidentsinagedcarenowhadsuchtoughlives #17APCC Maggie BeerFoundation 41 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in a gourmetrestaurant. conference. You wouldswearfrom hertonethat shewasreviewing the workofafivestarchefin Beer isalmostlickingher lipsasshereads aboutoneofMorgan-Jones’ innovationstothe can involvecomplexfoodanddigestionneeds. As allthosewithelderlyorillrelatives orwhoworkinagedcare andpalliativecare know, eating Flavour andfragrance to thenursingstaffground staff,andchangingtheculture.” CEO, anditneedstobeaconcertedeffortwitheveryone(inthefacility)involved,from thecarers To effectchangeinagedcare, shesays, requires “twochampionsforgoodfood:thechefand such adifference inthelivesofpeopletheycook for,” Beersaid. food industry–theveryreverse ofwhatitshouldbe becausetheseare thepeoplewhocanmake “The cooksandchefsare considered thelowestoflowinmany(agedcare) placesandinthe and “toadvocateonthechef’s behalf”. And onthefinaldayCEOsare brought intothemasterclasses, toshowwhatcanbedone standards forfoodinagedcare “butnotoneforquality”. told bymanagementaboutwhattheycanorcan’t do.Astoundingly, Beersaid,there are safety The masterclasses bringinauditingexpertswho“debunk”whatchefsandcooksare wrongly solutions andbuildconnectionsrespect. aged care homesacross Australia,togivetheminspiration,listentheirproblems, helptofind The Foundationalsolaunchedregular workshopsandmasterclasses forcooksandchefsfrom cooked fortheBritishroyal familyandcatered atWimbledon. former chefatSydney’s Berowra Waters Inn,BennelongandMGGarage,whohadfamously aged care group appointed,asExecutiveChefandFoodAmbassador, PeterMorgan-Jones, a Beer’s advicetoJuddwasfinda restaurant chefwith apassionforfoodandpeople,sothe HammondCare ChiefExecutiveDrStephenJudd. But thatconference ledtoherformingtheMaggieBeerFoundationandmeetingswith laughs now. “I thoughtIhadapileofsolutionsbutitwasn’t therighttimeandmostofthemhatedme,”she #17APCC 42 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in operational financesand feedingissues. to bringonmenusof“smashedavocado”,Beer saidthere were complicationsotherthantight Asked whetheritistimeforthehipsterstotake over thekitchensofnursinghomesandhospices, can listentomusicandpodcasts,“ofallthethings Iwishhadknownaboutinlife”. For herowndyingdays,Beertalkedaboutwanting tohavespeakersbeneathherpillowssoshe delivered insong.“Soourspiritssoared,” sheremembered. in acardboard coffin,upon which allhergrandchildren haddrawn,andwithmostoftheservice at homebytwodaughters,bothnurses,andan auntwhohadamostbeautifulfuneral,buried Happier experienceswere thearound thedeathofhermother-in-law, whowascared forclosely “That willbewithmeforever,” shesaid. interstate, “withoutmeatherside”. about herownexperienceswithdeathanddying,includingdistress athavinghermother die Like somanyattheconference, Beertalkedinpresentations andthelunchdinnerbreaks Providing pleasure It’s duetobepublishedinPalliativeCare Week in2018.Beersaid: professionals –anoccupational therapist,dietitianand speechpathologist. of theUniversitySydney, who isbasedatHammondCare’s Greenwich Hospital,andother Professor RoderickMacLeod, aseniorstaffspecialistinpalliativecare andconjointprofessor He isnowworkingonacookbookforpeoplereceiving palliativecare –incollaborationwith some recipes andfindoutmore here . or usecutlery–maybebecauseofdementiaaphysicallimitationlikearthritisstroke. See Morgan-Jones haswrittentwocookbooksforpeoplewhofinditdifficulttochewandswallow, savour onhistongue”,Beersays. It’s “awayofdeliveringflavourandfragrancethrough tinybubblesthattheboycouldsafely stomach foreightyears. moved bythestoryofafriend’s 14-year-old sonwhohasbeenfedthrough aPEGtubeinhis She isreferring tosomethingknownas“molecularair”,designedbyMorgan-Jones, whowas like aflavoured waterbubble.” strawberries andtheice-cream. You canputitonthetongue,andjustdisappearsintonothing, liquid intodelicatefoam,”Beercontinues.“You spoonitoff,andyoucanactuallysmellthefresh “Using asmallcleanbatterypowered fishpump,plastictubingandapipette,hefrothed the So farsogood,butthenthehintofsomethingdifferent. passed through asieve,withbindingagentaddedtohelptheformationofbubbles.” “First, hecreated aliquid,blendingfresh strawberriesandice-cream,” shebegins.“Thenit’s ways toenablethemgetpleasurefromfoodagain.” While theymaynotbeabletoeatamealinthesamewayasyusedto,wehavefind caused bychemotherapy, whichcanimpactonpeople’s enjoyment. This isreallyimportantstuff.Therearealsoissueswithappetiteloss,ametallictasteoften #17APCC 43 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in Tweet reports “In palliativecare, wecanstillprovide pleasure infood.” To provide relief from painisagiven,butsoshould bethepleasure offoodandeating,shesaid. It shouldalsobeanintrinsicpartofpalliativecare. Shesaid: aged care mayleadagedcare facilitiesintoseeinggoodfoodas“acompetitiveadvantage”. But shesaid,attheriskofbeingcrude,pendingtsunamiofdemandingbabyboomersinto minestrone, lentilsintothepatties,”shesaid. totrickthemmakefoodbothcomfortingandnutritional.“Wechefs needtolearn putkaleinthe Many ofthisgeneration’s residents havehad“quiteordinary foodlives”,shesaid,socooksand physical symptoms.” We needtolookwaysmeetthesocial,emotionalandspiritualneedsaswell left. the qualityoflifeandmanagesymptomssopeoplecanenjoytofulltimetheyhave We allknowthatpalliativecareseekstoneithershortennorprolonglifebutimprove #17APCC 44 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in #17APCC 45 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in #17APCC 46 You can track Croakey’s coverage of the conference here. palliative care food inaged care,quality of hospitalsand Maggie Beercallsfor “revolution” in #17APCC 47 You can track Croakey’s coverage of the conference here. dying beauty andhumanity amongstdeath and exhibitionStunning art gives glimpses of Drawing Award. been afinalistinmany major Australianartprizesincluding the Waterhouse andtheKedumba Working primarilywithcharcoal, “becauseitprovides somanyshadesofgrey”, Ambridgehas staged inAdelaideassociationwiththeAustralianPalliativeCare Conference lastweek. Ambridge. Theyare amongthestunningandmovingworksinher’til deathexhibition,whichwas These are raw, powerfulglimpsesofdeathanddying,provided through theartof delivering medicationashekeepsafrailholdon life. A womanshares herpartner’s deathbed.Theyare wrappedtogether tightly, withapumpline takeninahospital orhospice. journeys More than1,000imagesof flowersbloom,wiltanddie,mirroring ourowncyclesthrough lifeand left. A pillowshowstheindentofadyingpatient’s resting head,capturingthetracesoflifeafterithas writes: Marie McInerney humanity amongstdeathanddying Stunning artexhibitiongivesglimpsesofbeautyand Artist andphysiotherapistMargaret Ambridge:prompting ustothinkaboutourlasthours,daysandminutes. #17APCC Photo credit: MarkFitz-Gerald  http://bit.ly/2ffhZAV Margaret 48 You can track Croakey’s coverage of the conference here. dying beauty andhumanity amongstdeath and exhibitionStunning art gives glimpses of head, thatshelaydown onitherselftoholdthatlastimpression ofwhatremained.” “She wassotraumatised toseethepillowstartraiseupandlose shapeofhermother’s died. with afriendwhohadbecomedistraughtwhenhermother’s bodybeingtakenawayaftershehad Another seriesofworks,titled‘Whatremains’, (seeimagebelow)emerged from aconversation I sawthemasaverystrong metaphor.” hospice… Theyage,theydeteriorate,sometimesoutlivethepeople,(don’t). “I sawfrom withthepeoplewhocomethrough thatflowers haveaparalleljourney the entourage…when itcametothecrucialmoment,theywere gone,”shesaid. make-up, nofriends,justtheflowers.ShewasaloneandIfoundthisterriblysad.Afterall “When Iwentbackacoupleofdayslatertotreat her, shewasinasideroom, dying,withno looked ratherbeautifulandsheaskedifcouldtakethemhometodraw. a littlegroup ofbudroses thathadn’t beeninwaterandhadshriveled.Theybothagreed they At thewoman’s request, Ambridgecleared awaysomeoftheflowersthathaddied,butfound shop’ worthofflowersallaround her room. at thehospicewasdressed beautifully, infullmake-up,andsurrounded bypeopleanda‘florist The exhibitionwasfirstinspired byoneofherpatients,anelderlywomanwhoinearlydays Floral metaphor the worktheydo,”shesaid.“Buthaveverylittleopportunitytoshowordiscusstheirwork.” “Palliative care isaveryspecialandprivateworkhealthprofessionals are deeplyaffectedby “We are allhuman,weare affectedbywhatwedo,”shetoldCroakey. and theeffectitcanhaveonpalliativecare andotherhealthworkers. in theexhibitionaimto“capture thestrength Iseeinhumanity”,toexplore theprocess ofdying But sheisalsoaphysiotherapistatpalliativecare facilityinAdelaide.Eachofthe50orsoworks #17APCC 49 You can track Croakey’s coverage of the conference here. dying beauty andhumanity amongstdeath and exhibitionStunning art gives glimpses of the endofbedabout where wewanttodieandwho wewanttobethere. “We’re all going todie,”shesays,“andsometimeswedon’t wanttohavethoseconversationsat all eventuallyenter, toprompt thinking abouthowwewantourlastdays,hoursorminutestobe. But thedriverforheristouseartprovide aglimpseinto someone else’s world,andonewewill work. explore theseissuesafteradayat able togointoacreative space to Ambridge saysshelovestobe tuck incloselywithadyingparent. death, aswelllettingchildren able tolietogether, before andafter introduced, coupleshave been Since doublebedswere death. an acceptedmedicalisationof thinks a double bed also challenged with pressure sores, butAmbridge double bedandthere canbeissues harder fornursestolean across a wereconcerns practical–itcanbe staff andtheservice.Someof the proposal foradouble bedwith It tookthree yearstoworkthrough through abedrail,”shesays. 50 years:whyjustaholdhand “You’ve beenlyingtogetherfor said. hands through thebedrail,”she had tositnextthebedandhold about patients(whose)lovedones we hadinthepalliativecare unit “It camefrom manyconversations patients whowere dying. struck thatithadcomefrom Ambridge’s effortsatthehospicetointroduce doublebedsfor named –sparkedcommentattheconference from keynotespeakerDrAlexJadad, international Another ofthepoignantpieces–acouplesharingdeathbed,afterwhichexhibitionis Art andpractice lot ofpeopletotalkaboutthemselves.” shared thestoriesoflosingtheirlovedones,it’s beenincredibly movingstuff,andalsoalloweda “That’s happenedmultipletimeswithmeoverthepastfewdays,where peoplehavecomeand moved tohearitwhenhesawtheexhibition. Her friend’s husbandhadnotknownabouthiswife’s distress atthetimeandhadbeenvery #17APCC Charcoal onpaper 50 You can track Croakey’s coverage of the conference here. dying beauty andhumanity amongstdeath and exhibitionStunning art gives glimpses of and dyingsoothesthesoul.” “The gesture ofacuptea and thechancetospeakopenlyaboutdeath news sitehostedbyPalliativeCare Australia. “At times,thegriefseemsoverwhelming,”shetold PalliativeMatters,the who are planningafuneralorgrievingthedeathoflovedone. works atafuneralhome,where she makesalotofcupsteaforpeople The work,titled‘DyingForACuppa’wasmade byKaren Benjaminwho grieving families. awarded itsartprizeforthisfantasticdress craftedfrom teabagsusedby In more movingexplorationsofartanddeath,PalliativeCare Australia Dying foracuppa Read more aboutherworkandtheexhibition Do makesure towatchthisinterview thankstoMarkFitz-Geraldforthephotosusedinarticle. With something good.” “If wecanstartthoseconversationsearlier, andartcanbeusefulforthat,thenIthinkI’vedone #17APCC The exhibition here. 51 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t but we’re stillgivingthemthesetreatments,” shesaid. hospital, theyare suffering, their familiesare beinggivenfalse hope, Cardona-Morrell toldCroakey. “Theyare havingadifficulttimein “We knowtheyhavepoorprognosis, butwekeepontreating them,” reflect thetransparency itseeks tobringendoflife. Screening andTriaging toAppropriate care), alternative partlyto has developeda29-pointchecklist–dubbedCriSTAL (Criteriafor Liverpool Hospital’s seniorintensivecare physicianDrKenHillman, UNSW researcher DrMagnoliaCardona-Morrell , workingwith Palliative Care (seetweetsbeneaththisarticle). development ofapalliativecare triagetoolbyMelbourne’s Centre for with otherinnovationstoimprove endoflifecare, includingthe It wasoutlinedattheAustralianPalliativeCare Conference , along professionals andfamilies thatdeathisbothnaturalandinevitable. problems intointensivecare unitsinthelastfewweeksoftheirlives,andtoremind health The aimistotryhaltthe“conveyerbelt”thatpouringfrail,elderlypeoplewithmultiple people approaching thenaturalendoftheirlives. confidence tostop“heroic” interventionslikecardiopulmonary resuscitation (CPR)onfrailelderly A clinicalprediction toolisbeingtrialedinaSydney hospital togivedoctorsandfamiliesthe writes: Marie McInerney at theendoflife “Please don’tletthishappentome” –toomuchmedicine Reminding medicinethat“deathisbothnaturalandinevitable” #17APCC  Dr MagnoliaCardona-Morrell http://bit.ly/2x0us5v

52 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t CPR. orders forlimitationoftreatment or not-for-resuscitation orders were stilladmittedtoICUorgiven such asadmissiontointensive care orchemotherapyinthelasttwoweeks of life.Otherswhohad patients withadvanced, irreversible chronic conditionswere givennon-beneficialinterventions According mediaattention,33percentofelderly tothestudy,whichattractedinternational the endoflifewere subjecttoinvasiveandpotentiallyharmfulmedicaltreatments. They were shockedtofindthatoneinthree patientsover 60yearsadmittedtohospitaltowards doctors, nursesetc). years, mappingtheexperiencesof1.2millionresearch subjects(patients,relatives, care-givers, Cardona-Morrell’s teamconductedasystematicreview of38studiesin10countriesover20 The UNSWresearchers nowdefinenon-beneficial treatment as: do nothaveaprospect ofsurvival. chemotherapy, intensivemonitoring,imaging–includingX-raysandbloodtestsforpatientswho But literature andexperiencesoonexpandedthedefinition toincludeallmanagementlike as medicalorsurgical activitylikeCPRorlifesupport. Cardona-Morrell saidherresearch beganwiththinkingabout futile,or‘non-beneficial’treatment Defining non-beneficial treatment Earlier attheconference Hillmangaveagraphicinsightintotheirfate,saying: department bedsinsteadofgoinghometodieinpeace. overdiagnosis andovertreatment andriskendingtheirdaysinintensivecare oremergency Family pressure, doctorsbentoncure, andhightechpossibilitiesmeantheyexperienceharmful advanced chronic illnesses,unaddressed frailtyandhighsocialexpectationoflongevity.” making upmore thanhalfofpatients,presenting atemergency departmentswith“multiple She talkedaboutthechangingprofile ofhospitalsin recent decades,witholderpeoplenow problem, whodrivesit,andhowtominimiseit?’. Cardona-Morrell presented tothe conference on‘Clinicallyfutiletreatment: howsignificantisthe the lifecycle.” “It’s timeforachange.We wanttogetbacktheconceptofacceptingdeathasanaturalpart leave theminaworsestateofhealththantheywerebeforeadmission.” remaining qualityoflifeandcanpotentiallycausethempainorprolongedsufferingor dying andwhichwillnotmakeadifferencetotheirsurvival,willprobablyimpair Any treatments,proceduresortestsadministeredtoelderlypatientswhoarenaturally happen tome’,soit’s extraordinarythatwe’redoingittootherpeople.” Hardly awardroundgoesbythatoneofourteamdoesn’t say‘pleasedon’t letthis #17APCC 53 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t could supportthesame patientinthecommunityfortwomonths. support inthetrial,given thatanintensivecare bedcancost$5,000 aday. Thesame amount Notwithstanding betterend oflifecare forpatients,youmightthinkthere wouldbebigsystem family doesn’t know, maybethepatientsthemselvesdon’t know,” shesaid. “It tellsusthatpersonisdyingbydefinition,but maybethedoctordoesn’t know, maybethe come upwithanumbertoestimatetheprobability ofapatient dyinginthenextthree months. advanced chronic illnessandfrequency ofhospitaladmissions –sothatdoctorsandnursescan That’s whattheCriSTAL toolisdoing,providing aprognostic checklist–withitemssuchas frailty, Take astepback recognise it,”shesaid. “We needtoharmonisethedefinitionofwhat’s theendoflife,howlongitgoesfor, andhowwe matter, unlikeforthoseworkinginagedcare orpalliativecare where deathmaybeexpected. There’s alsotheissueofmedicalmission.Fordoctorsinacutesettings,endlifeisa“critical” stroke, andlossofconsciousness, shesaid. different fora25yearold versusan85yearoldwhocansuffercomplicationslike broken ribs, In facttheCPRsuccessrateisabout15percent,andprognosis andoutcomesare very procedure. much alwayssuccessfulandquiteasimple she said,feedingthebeliefthatCPRispretty TV medicalshowsalsohavealottoanswerfor, go”. or thewifeof50yearswhodoesn’t wanttolet families nottogiveup,“forthegrandchildren patients canfeelthepressure from their “everything theycan”,shesaid.Inturn, There isfamilypressure ondoctorstodo overtime. a journey” to getoutofbed,butthatdying“isaprocess, in thefinalhours,whentheyare nolongerable that apatientisnotjustapproaching endoflife by familiesandhospitalclinicianstorecognise In Australia,itseemstobemore areluctance and hospitalstoover-diagnose andovertreat. these includefinancialincentivestodoctors Cardona-Morrell said.IntheUnitedStates, There isarangeofdifferent motivations, ‘Why?’ Given theharmanddistress thesecancause,andtheunnecessarycosts,questionarises: Why? difference totheoutcome,butwhichcouldprevent acomfortabledeath. acute conditionsinthelastfewdaysoflifewithcomplexmedicationsthatmadelittleorno The researchers reported thattheyalsofoundevidenceofconcurrent treatment ofothermultiple #17APCC Why healthsectorcontinuesclinicallyfutiletreatments 54 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t Tweet reports where andhowtheywouldliketodie.Shesaid: doctors reduce theirprognostic uncertaintyandstartimportantconversationswithpatientsabout Neither, shesays,isitafurthermedicalisingofhealthcare, butratheranobjectivetooltohelp when Cardona-Morrell unveileddetailsataUSmedicalconference. fraught US“DeathTest” debate,ledbyformerRepublicanpresidential campaignerSarahPalin, It’s alsoaboutmore appropriate care, notlesscare, shesays,thoughthetoolgotcaughtupin will notgoaway,” shesaid. is abouta“neglectedpopulation”.“Thisverynonrocket science,butisagrowing problem that not involveanexcitingnewmedicineortechnology, norhighprofile diseasesorconditions,and She thinksthatthelackofenthusiasmforfundingisduetoanumberreasons: theproject does with thefloodofelderlypatientsoverwinterintoLiverpoolHospital. discussion relies ontheworkoftwopart-timenurses,whohavebeenbarely abletokeepupin attention andawards. Thecurrent randomisedtrialofthetoolfollowedbyaone-hourend-of-life But Cardona-Morrell saystheresearch isstrugglingtoattractfunding,despiteinternational some medicines,andlettingolderpatientsdieinpeaceataplaceoftheirchoice.” comes toprovidesymptomreliefandothersupport,trainingthefamilyinadministering This mayincludesendingthemhomewithpainrelief,acommunitynursingservicethat and whatisinlinewithpatientpreferences. Our jobisnownottodoeverythingbutwhatinthebestinterestsofpatient, technology istherewecouldbeharmingthepatient. benefit weneedtotakeastepback.Bydoingeverythingthatisavailablejustbecausethe harm’ principle.Ifwe’redoingthingsthatareunnecessaryandaren’t goingtobeof Doctors aretrainedtocureillnessandsavelives,butwehaverememberthe‘dono don’t wanttoupsetthepatient,ordon’t wanttobewrong. about thetimepatienthastolive:theydon’t wanttohavetheconversationtooearly, One ofthereasonsdoctorsclaimnottohaveconversationsisthattheyareuncertain #17APCC 55 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t #17APCC 56 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t #17APCC 57 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t She outlinedthedevelopmentofapalliativecare triagetool. submission byanauthorundertheageof40. delivered theIanMaddocksGuestLecture attheconference, selectedasthebestpalliativecare Palliative care physicianDrBethRussell,from theCentre forPalliativeCare inMelbourne, Triage inpalliativecare #17APCC 58 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t More tweet-reporting #17APCC 59 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t #17APCC 60 You can track Croakey’s coverage of the conference here. much medicine at the end of life much medicineat theendof letthishappen tome” –too “Please don’t National ConsensusStatement: Essentialelementsforsafehighquality endoflifecare Further reading #17APCC 61 You can track Croakey’s coverage of the conference here. the palliative care are field: you ready? Laying down the euthanasiachallenge to set tointroduce enablinglegislation. voluntary euthanasia–believed tobethefirstit’s hadatanationalconference –as Victoria looks The conference, hostedbyPalliativeCare Australia,stagedalandmarkpaneldiscussion on are mostequippedtoprovide end-of-lifecare. step uptoassistandencouragevoluntaryeuthanasia, ratherthanpalliativecare specialistswho where non-specialistssuchas“fertilitydoctorsorsportsphysicians”physician advocateswill The AustralianPalliativeCare Conference wastoldthere isapotentialimplementation“void”, lethal medicationtorelieve their suffering,according toexperts. euthanasia andtoconsiderwhattheywoulddo whenaterminallyillpatientaskedtobegiven It’s timeforpalliativecare specialistsandservicestograpplewiththereality ofvoluntary writes: Marie McInerney care field: areyouready? theeuthanasiachallengetopalliative Laying down Big issuesforpaneldiscussion.(ImagecourtesyofElissaCampbelltweet) #17APCC

 http://bit.ly/2xqAmwW

62 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities and patientstheirfamilies fearthatitinvolvesinterventions that mighthastendeath. compound existingmisconceptionsofpalliative care, where physiciansare dubbed“DrDeath” Some attheconference saidtheyworrytheintroduction ofvoluntaryassisteddeath will At thesametime,there isconfusioninthecommunityaboutdifference betweenthetwo. pain. believing thatbetteraccesstogoodpalliativecare wouldmeanno-oneneedstodieinunbearable The fieldofpalliativecare hastraditionally opposedvoluntaryeuthanasia,withmanyinthesector of sufferingbyearlytreatment ofpainandotherphysical,psychosocialspiritualproblems. of lifepatients(andtheirfamilies)withlife-threatening illness,through theprevention andrelief According totheWorld HealthOrganisation definition,palliativecare seekstoimprove thequality and supportforotherpalliativecare patients. palliative care fieldbyincreasing itsprofile and resourcing. Othersfeared itmaydivertattention However, somepanelistsbelievethemovetowards voluntaryeuthanasiacouldbenefitthe ethical guidelines,litigation,andregulation. euthanasia, related to“thedevilinthedetail”–worries aboutprocess, training,support,funding, Conference participantsalso heard abouttheimplementationofvoluntary many otherconcerns was told,reluctant toengageontheissue. Many inthepalliativecare sectorare opposedtovoluntaryeuthanasiaandare, theconference Implementation issues euthanasia lawswere in1997. overturned It wouldbethefirsttimesuchlawswere inplacesincetheNorthern Territory’s short-lived be introduced in2019.NewSouthWales legislationisalsoexpectedthisyear. If theVictorian legislationispassed,voluntaryassisteddeath,asitcalledthere, isexpectedto #17APCC 63 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities said: But shesensedareluctance withinherownprofessional networktoengageonthe issue. She system willbeneededwhenvoluntaryassisted death isintroduced. Adelaide’s DawHouseHospice,are thatahighlytrainedworkforce andstrong ethicalguidance The lessonsfrom Zitter’s article,according toclinicalservice coordinator HelenWalker, from suddenly “oneminutebefore midnight” ontheissue. in SouthAustralialastyearcamewithinonevote ofpassing.Shesaidsherealised itwas in Adelaide,abouthowunprepared shewaswhenaprivate member’s billonvoluntaryeuthanasia It chimedwithanearlieradmissionfrom Myhill,apsychiatristattheRepatriationGeneralHospital introduced lastyear. toCalifornia Shewrote: how herstomachlurched whenshefacedherfirst request forassisteddeathafterlegislationwas In arecent NewYork Timesarticle,USpalliativecare physicianJessicaNutik Zitterdescribes Get ready and withfamiliesare “maindrivers”ofmedico-legalaction.Sheasked: How farwouldtheybeprepared thatmiscommunicationwithinteams togo,sheasked,warning about whattheywoulddoifaskedtoassistapatientdie. insurer Avant, cutthrough withachallengetopractitionersthinkdeeply manyoftheconcerns The panelwaslargely medical,butmedico-legalrepresentative Georgie Haysom,from indemnity the implicationsforsectorofitsintroduction. It wasnot,shesaid,tobeadiscussionaboutthepros andconsofvoluntaryeuthanasia,but delegates to“engageinrespectful andopenexchangeofviews”. and emotionalissue”forthesector, panelfacilitatorDrKarinMyhillurged presenters and As sheopenedthediscussiononwhatPalliativeCare was“acomplex,difficult Australiawarned Where todrawtheline? euthanasia”. to easepainandothersymptoms,whilemanyinthecommunitybelievethatit“amounts practitioners, it’s anuancedapproach involvingcareful prescription ofarangemedications There’s alsotensionaround thepracticeofpalliativesedationinlastdaysorhourslife.For through? I lookatmyhospiceteam andwonder:areweready?Havereallythoughtthis that weweren’t fullyprepared todealwithit. To me andmanyofmycolleaguesinCalifornia,itfeltasifthelawhadpassedsoquickly and procedure. Our hospital,likemanyothersatthattime,wasstillintheearlystagesofcreatingapolicy of referral?” line? Howisthatgoingtoworkintermsofteamwork?that Where doyoudrawthelineandwhatwillifsomeoneaskstostepover medication? Areyoupreparedtoadministerthemedication?” Are youpreparedtogivetheminformation?prescribethe #17APCC 64 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities • • Some ofhis“asyetunanswered” questionsincluded: and anothertoestablishwhatdoattheservice level.“We haven’t gotthatsortedyet”. It wasonethingtobeablehavethelegislation andpolicyforvoluntaryassisteddeath,hesaid, But hesaidmuchstillremained tobespeltoutindetailthelegislation,regulations, andtraining. how besttocreate a“safeandcompassionate”voluntaryassisteddyingframework. Assisted DyingMinisterialAdvisoryPanel,which recently handed downrecommendations on He saidhehadbeenreassured bytheworkofVictorian Voluntary insomeofhisconcerns palliative care leaderinCanada–there wasnoformalregister to“trackwhoisdoingwhat”. Asked laterbyCroakey where thatwasreported, Allcroft said hehadheard itpersonallyfrom a medical assistanceindyingCanadawasafertilityspecialist “If notus,whothen?”hesaid,addingthatit“mayscare youtoknowthatthefirstdoctorutilise complete assessmentsofpatientsattheendlife. if itwasnotpalliativecare, oneofthefewspecialtieswithmulti-disciplinaryteams abletoprovide Topmost, over who mightrespond hesaid,washisconcern tovoluntaryassisteddeathrequests felt hadyettobeaddressed. General Hospital,saidhewaswrestling withmultiplenuances,complexitiesand detailsthathe Dr PeterAllcroft, arespiratory physicianandpalliativecare seniorconsultantattheRepatriation Unanswered questions reflection andexploration forthatpersonwhoisclearlysuffering.” “Instead Ithinkwereally needtoframethisas…an opportunity toengageinsomeverydeep conversation. “In thepast,maybesomeofushavejustbattedback,saidit’s notlegal, really shutdownthe opportunity toask“whynow?”,”shesaid. When facedwithapatientseekingassisteddeath,palliative care specialists shouldtakethe death changedtheirmindafterreceiving goodpalliativecare. Centre, saidoverseasresearch showed that70percentofpeoplewantingtoaccessanearly Professor JenniferPhilip,chairofPalliativeMedicine attheVictorian Comprehensive Cancer assisted dying,andtoasktheurgent questionsifpatientsexpress awishtodie. Other speakerssawitasimportanttokeeppalliativecare as“quitedistinct”from voluntary Why now?

What willbetheminimal clinicalskillset,experienceor qualifications? from clinicianswhohavestandards “thatare notasrigorous as ours”? How willlegislationand guidelines protect patientswhoare seeking voluntaryassisteddeath void alsowithinourownsectoruntilwedosomemorework.” If wetakeourselvesoutofthepicture,I’mworriedthere’s avoid,andI’mworriedthere’s a different,” shesaid. the ethicalframeworkthatweworkin(where)everycasewillcomeacrosswillbe We needtoprepareourselves,webeknowledgeableandreallyunderstand #17APCC ”. 65 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities assisted deathlawreform toleadgreater fundingandresources forpalliativecare. Fellow panellistMichael Moore, CEO ofthePublicHealthAssociationAustralia, also expects “The profile ofpalliativecare willbeincredibly boostedbythisdebate,” hesaid. “some evolutionandsomematuritydeveloping” inthesector, whichwouldbenefitit. But hesaidthathavingitdiscussedatanational palliativecare conference meantthere hadbeen relieving suffering”,plusanelementof“thisisourturf”. stems from itsfaith-basedorigins,andhad“tendedtooverstatewhatcould beachievedin Hunt latertoldCroakey thathebelieves oppositiontovoluntaryassisteddeathinpalliativecare involved. assisted dyingandendoflifewillrequire “specificexperience”from medicalpractitioners It recommends thatassessment oftheeligibilitycriteriaandconversationsaboutvoluntary assessment process inorder toprovide healthpractitionerswithclarityabouttheirobligations”. The panel’s report saysenablinglegislationwillneedto“clearlystepouttherequest and abortion. in theworld,withstrong protections forconscientiousobjectorsthatgobeyondthose recommendations were describedbytheVictorian asamongthemostconservative Government Hunt wasamemberoftheVictorian Voluntary AssistedDyingMinisterialAdvisoryPanelwhose Implications forpalliativecare field • • • • communities were ofa“secondHolocaust”whenthelawswere warned inplacetheNT. There has been a history of “fear mongering” around the issue, he said, including where Aboriginal who supportsvoluntaryassisteddeath. Her commentsprompted from awarning panelmemberDrRogerHunt,apalliativecare physician “We’re livinginasocietywhere alllivesare notregarded asequal,”shesaid toapplause. palliative care becausetheyfeared it involvedeuthanasiaorhasteningdeath. elderly, diverseculturalcommunities,andIndigenouspeople,whooftenalready delayedseeking deaths versusthebroader impactonsocietyandvulnerablecommunities,particularlythefrail It was,shesaid,focusedontheverysmallnumberofpeoplewhomightopttohastentheir mention namesbuttheynodoubtincludevoluntaryeuthanasiachampion assisted deathhasbeen“toonarrow”, ledbyahandfulof“charismatic”advocates.Shedidn’t thatpublicdiscourseonvoluntary That wasanissueforothers.Onedelegateconcerned “How willweensure fairandequitableresources forallourpalliativecare patients?” death willbe“timeconsumingandneedtorepeated”, heasked: thattheassessmentandmanagementofpatientsrequestingAnd warning voluntaryassisted

How dowesupportasingle-doctortownwhere apatientmayrequest assisteddeath? needaspecificMedicareDoes theFederalGovernment itemnumbertokeeptrack? How willweensure pharmacistsare adequatelytrainedtounderstandmedications? place inafourbedbaypublichospitaloronlypatient’s home? From apracticalperspective,where willvoluntaryassisteddeathbeperformed?Canittake #17APCC Andrew Denton. 66 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities person?” “What couldbemore challengingwhenwetalkabout changethanbeingaboutendingthelifeofa of things”.Moore added: conduct ormore uncertaininitssuccessthantotake theleadinintroduction ofaneworder He quotedMachiavellithatthere is“nothingmore difficulttotake inhand,more perilousto training –ensuringthatsupport,education,programs andguidelinesare inplaceforclinicians). states andterritoriestheCommonwealth(already signalledinthisGuardian article , and Moore toldthepanelthat bigissueswillincludefunding,includinglikelycostshiftingbetween for itandhoware yousupportingthem?Howhave ensured equityofaccess?” “Minister, you’vegivenhugenewresponsibility tohealthprofessionals: howare yougoingtopay questions tobeputaHealthMinisterinanEstimatesreview: issues –an18monthimplementationperiodisproposed inVictoria’s case–Moore imaginedthe Warning thatvoluntaryassisteddeathlegislationwouldneedaseriousleadtimetodiscusssuch Canada wasforhim“themosttellingcomment”inthepaneldiscussion.Hesaid: He saidAllcroft’s thatafertilitydoctorhadledthewayonvoluntaryassisteddeathin warning in 1997thatwasoverruledbytheFederalGovernment. When hewasHealthMinisterintheAustralianCapitalTerritory, Moore introduced aeuthanasiabill adequate funding.” other optionhasbeenexplored,” hesaid.“You can’t dothatinanequitablewayunlessthere is “People wanttoknowthatwhensomeonedoeschoosehaveassistancedie,every palliative careprocess.” will beencouragingassisteddyinginsteadoftakingpeoplethroughanappropriate If weleaveitinthehandsofsomeonewhodoesn’t understandpalliativecare,thenthey the sportsphysiciansorotherswhodon’t havethelevelofskillsthere. But iftheystepawayfromthedecisionaltogether, itwill belefttothefertilitydoctorsor to die… palliative carespecialists.Whattheydon’t, ofcourse,wanttodoisactuallyassistpeople The peopleinAustraliawhohavethemostskillstoassistpeopletheirdyingare #17APCC 67 You can track Croakey’s coverage of the conference here. in palliative care Conference tospotlightgaps andinequities Tweet reports #17APCC 68 You can track Croakey’s coverage of the conference here. on voluntaryassisteddeath in palliative care Conference tospotlightgaps andinequities Dr RogerHunt Michael Moore, CEOofthePublicHealthAssociationAustralia Watch theseinterviews , palliativecare physicianandmemberofVictoria’s Ministerial AdvisoryCommittee #17APCC 69 You can track Croakey’s coverage of the conference here. be problematic, conference istold palliative care can Westernised systems of Ricciardone said: workers wasnotabletomeethisculturalneeds. with aWestern systemofcare, inhisthird language,where practiceevenbyAboriginalhealth But itwasalsocompromised byhavingtoliveahugedistancefrom hiscommunityandtodeal his difficultytoleratingpalliativechemotherapy, Ricciardone said. The man’s care wasalready limitedbyhislatepresentation tothehealthservicewithcancer, and Palliative Care Conference aboutoneofhispatients,amanin30s. graphically illustratedtheinequitiesinaccesstopalliative care inapresentation attheAustralian Dr JamesRicciardone, aregistrar withtheAustralianCollegeofRuralandRemoteHealth, system ofcare itselfisan“immensebarrier”toequitable access. life care forAboriginalandTorres StraitIslanderpeople, particularlyinremote areas, sayingthe A palliativecare Territory doctorworkingintheNorthern hasurged majorchangestoendof writes: Marie McInerney problematic, conferenceistold Westernised systemsofpalliativecarecanbe having tosomehowcope withtheirsituation.” It’s quitecrushingtoseesomeonewho’s soisolatedfrom theirfamilyandculture,just Regardless ofhowmuchculturaltrainingyou have, it’s thesystemitselfthatis a barrier. and thatisanimmensebarrierattheoutset. Despite alltheeffortofpeopleinvolved, thesystemitselfisincrediblyWesternised Dr JamesRicciardone: identifyingsystemicbarriers #17APCC 

http://bit.ly/2fg3ZdH 70 You can track Croakey’s coverage of the conference here. be problematic, conference istold palliative care can Westernised systems of far westNewSouthWales. District thatwassaidtobetransforming thepalliativeapproach inruralresidential agedcare in palliative care servicestoremote communities,including workbytheFarWest LocalHealth There were anumberofotherpresentations attheconference aboutimproving deliveryof wrote inachallengetothehealth,communityandaged sectors. recognised inthedesignofAustralianagedcare,” HealingFoundationCEORichard Weston “In allbutahandfulofcases,thetraumabeing forcibly policy isnot takenundergovernment totheagedcareStolen Generationssoundedawarning sector. And therecent report tomark the20thanniversaryofBringingThemHome report intothe ability toacceptcare andsupportfrom palliativecare services. historical distrustofmainstream servicesalsoimpingesonIndigenouspeople’s willingnessand into serviceprovider perspectiveshasfoundthatthe broader contextofAboriginalhistoryand As wellasdifferent understandingsofdeathanddying, autonomyandcommunity, research as astartingpoint. people, whichhasurged agreater role forAboriginalcommunitycontrolled healthorganisations His experiencesunderscored research intopalliativecare forAboriginalandTorres StraitIslander provide proper supportinaremote locationwhenhegotthere. Hesaid: to die,whichinvolvedweeksofwranglingoverearlyparole andthenproblems withbeingableto Ricciardone saidanotherbigandcomplexissuewas inassistinghispatienttoreturncountry tocountry Return prompting PalliativeCare Australiatoputitontheagendafornextconference in2019). (The issueofpalliativecare forprisonersalsoemerged inothersessionsoftheconference, “antiquated approach” tocompassionaterelease fordyingprisoners. Territory,In theNorthern hesaid,itwas“safetosay”thatCorrectional Serviceshadan which exacerbatedpainandreduced qualityoflife. and lackingcontrol, withchallengesinaccessingmedicationandappropriate equipment,allof evidence from theUnitedStatesshowedthatpeoplewithterminalillnessesinprisonsfeltisolated He saidthere wasnotalotofevidenceaboutendlifeoutcomesforprisonersinAustralia,but Ricciardone saidthere wasan“ethicalminefield”around palliativecare andprisons. aboutprisons Concerns consideration asthoseofuswholiveinthecity.” Indigenous people,particularlyinremoteAustralia,deservetohavethesame When wedeveloppolicyandwhenwaystohelppeopledieathome, the system,notbecauseofit. I oftenfeelwhenworkintheNorthernTerritory thatreturntocountryhappensinspiteof #17APCC 71 You can track Croakey’s coverage of the conference here. be problematic, conference istold palliative care can Westernised systems of • • • • particularly asherresearch foundthat: to address equitableandculturallyappropriate care forresidents but canalsobeachallenge, Her workfoundthatthisdiversitygeneratesmanyopportunitiesforagedcare organisations staffcomefromoverseas-born AsianandAfrican regions. residentshighlighted thatthemajorityofoverseas-born comefrom Europe whilethemajorityof But apresentation oncross-cultural trainingbyFlindersUniversityassociateprofessor DrLilyXiao overseas. born cultural diversityinagedcare, withanestimated31percentofresidents and32percentofstaff A conference sessionon palliative care inagedcare talkedaboutthe“richtapestry”brought by in accesstootherpeoplefrom culturallyandlinguisticallydiversebackgrounds. Australians, therecent draftProductivity Commissionreport onhumanservicesidentifiedgaps As wellasloweraccesstobothinpatientandoutpatientendoflifecare forIndigenous Other gapsincare Broken Hilllocal)RobinSellick,aimingtoexplore thebalancebetweenlifeanddeath. presentations, showcasingaphotographicstudy(‘Melorites’)bycelebrityphotographer(and The specialistpalliativecare teamfrom thatservicefeatured inoneoftheconference poster

and workforce cohesionincross-cultural interactions. there isalackoforganisational structure toenableandsustainhigh-qualitycare forresidents scarce, and educational programs andresources incross-cultural care services foragedcare staffare working withco-workersincross-cultural interactions staff were notaware ofnormative approaches whendeliveringcare servicesto residents or most staffintervieweddidnotattendeducation programs incross-cultural care services #17APCC 72 You can track Croakey’s coverage of the conference here. be problematic, conference istold palliative care can Westernised systems of #17APCC 73 You can track Croakey’s coverage of the conference here. be problematic, conference istold palliative care can Westernised systems of right forMaori,wetendtogetiteveryoneelse.We arethat.” learning “There isaverystrong alignmentwithMāoribeliefsandpalliativecare,” shesaid.“Whenwegetit house) withafocusonspiritual,emotionalandsocialneeds. Care guidelineswere basedaround theMāoriHealthModel,Te Whare Tapa Wha(a foursided commitment toalignstandards withtheprinciplesofTreaty of Waitgangi withMāoripeople. Mary Schumacher, ChiefExecutiveofHospiceNewZealand,saidhersectorhadanexplicit “There are wecantakefrom alotofculturallearnings manyplaces tobenefitoursociety”. particularlyfrom“can learn, someofthelessdevelopednations”. bestpractice. ButhesaidAustralianpalliativecareBallyCara CEOwhenaskedaboutinternational No oneplacehasalltheanswers,saidMarcus Riley, chairoftheGlobalAgeingNetworkand where thecommunityisparamount. difference”, includingbetween mainstream cultures western that focusontheindividualandthose Conference keynotespeaker, griefspecialistLieseGroot-Alberts talked about“honouring #17APCC 74 You can track Croakey’s coverage of the conference here. death, dyingand caring Share this intimate conversation about beloved family. Shealsocontinues tocare forothers,including herelderlyparents. Associate Professor attheInstituteforReligionandCriticalInquiryACU,aswellfrom her Now Juliegetsmuchlovingcare from herfriendandformer colleague,RobynHorner, whois when shewassoonafterdiagnosedwithlungcancer anddied14monthslater. cancer, shewascared forbyherbestfriendandhousemateCath–onlytobecomeCath’s carer It’s notherfirstencounter withterminalillness:originallydiagnosedfiveyearsago breast bones andlungs. In February2016shewasdiagnosedwithmetastatic breast cancer, which hasspread toher development forAustralianCatholicUniversity. Julie Morgan isaformerlecturer inethicalleadershipand seniorconsultantonorganisational caring Share thisintimateconversationaboutdeath, and dying JulieMorgan(L),inconversationwithherfriendandcarer RobynHorner. BehindthemisLizCallaghan, #17APCC CEO ofPalliativeCare Australia  http://bit.ly/2xzw1Yl

75 You can track Croakey’s coverage of the conference here. death, dyingand caring Share this intimate conversation about sometimes Iwon’t thinkofdoing somethingtillI’venoticedsomeoneelsedo it. I struggletobeacarer. I’mnotasintuitivelyobservant manyothers,Iliveinmyhead,so describe itasaprivilege tobeinthismomentJulie’s life… that itis,Iwouldn’t wanttobeanywhere else(thanproviding closesupport),soI,too,would You cankindofimagine,then,howshockingitisforthisto be happening,unfolding,butgiven she’s taughtmesucha lot. my twokids.Icountitasaprivilegetobeherfriend. She’s muchmore extroverted thanIamand she movedtoSydney, andshe’s thegodmotherofmy(13yearold)daughter. Sheisverycloseto I’veknownJulieforover30years.Ishared beforeRobyn Horner: ahousewithherinMelbourne touched bythesupportIhavefrom Robyn,andmybrother andsister. they are inGeneva!Ifeelhaveauniverseofsupportaround me,butinparticularI’mreally Jewish friendsinNewYork andBuddhistfriendsinBangkokpeoplewhodon’t knowwhat I’m surrounded byloveand prayerandsupportpositiveenergy from allovertheworld,from MacCallum CancerCentre) CityMission. andMelbourne palliatively now, and I’mhappywiththat.Ihavegotverygoodcare atthePeterMac(Peter on spotswhere Ithinkitwillhelptoeasethepainon thespine.Reallytheyare justtreating me what itis.It’s notgoingtogetbetter. Thechemohasdoneas muchasitcando.Ihaveradiation Eighteen monthson,IthinkI’mpretty luckyinthatI’vehadlongerthantheythought Iwould.Itis while thelungx-rayshowedhundreds oftinytumours. proverbial Christmastree. Icountedatleast16-17different tumoursitesonmyspineandribs, x-ray. Shesaidthatgivenmyhistorysheshouldalsodoabonescan.didanditlituplike months ofnotbeingabletofixthepainwithmychiropractor, Iwenttomydoctororder achest little dogandfellquiteheavilyonmychest:Ithoughtmighthavebroken myribs.After afew Itrippedovermy tobewithfamilyandfriends.Onemorning I thenmovedbacktoMelbourne a privilege,Iwouldn’t tradeitforasecond. intense experience,partlybecauseIwasstillrecovering from my owntreatment, butitreally was aged only49.Shewaspretty keentoget50butshe didn’t quitemakeit.Caringforherwasan unfortunately itwasn’t, itwasverysignificantprimary lungcancer. Cathdiedafter14months, the staffmembersupthere hadTB.Shewentawayfortestsandwewere hopingitwasTBbut sowouldoftentravelbackwardsMacKillop International andforwards toEastTimor. Oneof Towards theendofmytreatment, wenoticedshehadaverybadcough.SheworkedforMary but it’s averybluntinstrument. experienced muchofthatshadowsidetreatment, particularlychemo.Chemokeepsyoualive too sicktocalloutforher, shewouldsomehowknow. We putthatknowingdowntoherhaving upatmydoorwayinthemiddleofnight;whenIwas when Iwasonchemoshewouldoftenturn so shehadareal senseofwhatwasneededinlookingaftersomeonewithcancer. Forexample, 2012 Iwasdiagnosedwithbreast cancer. Manyyearsbefore thatCathhadovariancancer Julie Morgan: IlivedinSydneyfor16yearsandshared ahousewithmybestfriendCath.In HowdidyoucometobebothacarerMarie McInerney: andonewhoiscared for? here’sThey continuedtheconversationwithMarieMcInerney; aneditedtranscript. the risksforpatientsandcarers where “thehostbecomesthehostage”. accessing goodcare, howhealthprofessionals more sometimesseepatterns thanpeople,and At theAustralianPalliativeCare Conference, JulieandRobynspokeabouttheirroles, about #17APCC 76 You can track Croakey’s coverage of the conference here. death, dyingand caring Share this intimate conversation about and intheendtheytakeover, they’re runningyourhouse. to yourhouseandyousay‘makeyourselfathome’ andtheydo?Theystayforweeksormonths, Derrida pickedupthisideaofradicalhospitality, toask:butwhathappenswhensomeonecomes lectures onhospitality, where hespoke aboutthis. of warinWorld War Two. IwasactuallyatDerrida’s lecture inParis1996,partofaseries of EmmanuelLevinas,aFrench philosopherofLithuanianJewishancestrywhowasaprisoner links, comesfrom French philosopher JacquesDerrida’s reading oftheidea“radical hospitality” ThetropeRobyn Horner: ofthe“hostbecoming thehostage”,words whichhaveetymological who rely oncare: whatdoyoumean? YouMarie McInerney: talkedabouttheriskof“hostbecominghostage”forpeople allowed meflexibility. But Icouldn’t havedonethatorbeinthisrole ifIwasn’t inajoborwithanorganisation that in termsofhermedicationwere dealtwithasaresult ofanintuitivesensewhere thingswere. rightinsteadofleftandcamehere.turned Itmeantthatawholelotofthingswere unravelling asIwasonthefreewayspoke toJulieinthemorning goingtoworkandshewasn’t verywell.SoI confidence thatifIneedtobehere (withJulie),Icanbehere. Thathappenedtheotherday. I PeopleatworkknowthatI’mcaringforJulie,andIhavetheluxuryoftheir Robyn Horner: your helpingstartstointerfere withtheautonomyofanotherperson. harder tobethecarer, toknowwhere theboundariesare, what youcandotohelpandwhere asa carer inbeingcaredIn termsofwhatIlearnt andwhatIlearnt for, sometimesIthinkit’s know whenit’s timetochangethesheets,andtrustworthyaboutfinancialmatters. you knowthatthey’re advocatingonyourbehalf.You’re confidentthattheyknowwhatyoulike, Confidence andtrustIthinkare theimportantthings.Ifthey’re accompanyingyoutothedoctor, that are importanttome,butthesymbolicthingsthattheywillremember whenIamgone. Julie Morgan: It’s notwhatthecarers do,it’s howtheydoit.It’s notalwaysthepracticalthings WhatmakesforagoodcarerMarie McInerney: andgoodcare? Julie hasalsobeeninterviewedanumberoftimesaboutheroppositiontovoluntaryeuthanasia.) things, partofmyrole isinsupportinghertogetthere. (Aswellasherconference presentation, through intheframe.SometimesIdoverypracticalthings,likeshopping,or, asJuliedoespublic another friendgaveheroneofthosedigitalframes,sopeopleshelovesare constantlypassing At onestage,IgotthemalltosendphotosofthemselveswithJulie,orjustthemselves,and developments andthatkeepsthemconnected. keep uptodate.Idon’t necessarilygointothenittygrittybutIsignalwhenthere are changesor the textsandemailscominginfrom friends,sothisisproving areally goodwayforpeopleto set upanemaildistributionlistof100ormore people.It’s alotofworkforhertoaddress all the worldwholoveJulie,andtheyare legion,wouldwanttoknowwhatishappening,soI’ve But there are otherareas where I’mbetter. Forexample,Iknewthatthepeoplefrom around #17APCC 77 You can track Croakey’s coverage of the conference here. death, dyingand caring Share this intimate conversation about But ifIhadn’t hadtheconfidencetoask,whatmighthavehappened? saying thisisn’t right,thisisn’t working,canyoureassess? We endedupbeingtreated verywell. I feltwasbeingabitdemandingthisweekwhen IrangthehospitalaboutJulie’s medication, that? same questionswedo?Ifthedoctorsaysasymptom can’t happen,dothey justhavetoaccept wonder, whenwegointothePeterMac,aboutwhat it’s likeforothersthere, cantheyaskthe in theirhands,butourlifeexperiencesmeanwe canaskquestionsandraiseissues.We often with doctors,asprofessionals. Iobviouslyhavealotofrespect forwhatdoctorsknow, and you’re WeRobyn Horner: are twopeoplewhoare highlyeducated andhavetheconfidencetoengage best intention,theycanstillveryeasilydismisswhatyou’re sayingtothem. but really whatthey’re lookingforare ofthedisease,andnotperson,sowithevery patterns you tobelievethatallpatientsare different, andeveryhospitaltalksaboutpatient-centred care, doesn’t actuallyhappenwith yourillness’,butIamstillexperiencingthesymptoms!Theywant Julie Morgan: SomanytimesI’vereported symptomstodoctorsand theyhavesaid‘no,that how doesthatmanifest? YouMarie McInerney: notpatients– talkedaboutoftenhealthpractitionersseepatterns, to care, soletmecare forotherpeopleinthewaythatIneedtocare forthem. stop beingthemselves.Forexample,Idon’t stopbeingacarer too.EvenwhenI’msickIstillneed allow thepersontobethemselves.Evenwhenthey’re sick,they’re stillthemselves,theydon’t Julie Morgan: Ithinkthecriticalskillofcarer isthecapacitytolisten,deeplyand on carers, what’s youradvicetocarers onhownottobecomehostage-takers? GiventhedifficultyofnotwantingtoMarie McInerney: rejectgoodintentionswhile relying They canforget thatyou’veactuallybeenapersonallyourlife,notjustpatient. ‘Have yourbowelsopenedyettoday?’Igotsuddenlythrown backinto‘youare justapatient’. about politics.Thenshesuddenlyswitchedandaskedeverynurse’s most importantquestion: Recently Ihadavisitfrom apalliativecare nurseandwewere havingareally lovelyconversation became hostages. had suchdifficultyeating.Inspiteofthis,sheinsistedonmakingalemontart;onceagain,hosts things. Afriendoffered tocooksomethingforCath.IsuggestedafairlyblandsoupbecauseCath andshewasvomitingmostofeverydaysocouldonlyeatcertain esophagus wasbadlyburnt people wouldaskwhatfoodcouldtheybringtohelp.Whenshewasgoingthrough radiation,her it prompts ‘competingpumpkinsoups’betweenfriends.Forexample,whenCathwassick, Julie Morgan: Itcomesacross indifferent ways.Imadethejokeatconference abouthow and otherpeopleare here inherhousetellingwhattodo. feeling asthoughmuchofthatistakenfrom her, thecancerdoesn’t allowhertodothatanymore, intheAsiaPacificandDeputyNationalDirectorInternational ofCaritasAustralia). Yet here sheis, career, takingonhigh-levelroles around theworld(includingas RegionalDirector ofFranciscans It becameaveryrelevant reference forus.Julieisverywelleducated;shehashadagreat #17APCC 78 You can track Croakey’s coverage of the conference here. death, dyingand caring Share this intimate conversation about with measIgo. drink, whichwasaginandtonic.I’dliketothink myfamilyandfriendscouldhaveagintonic The PastoralCare peoplecamearound withadrinkstrolley, andweallshared Cath’s favourite After Cathdied,noonerushedusoutoftheroom; wewere abletositwithherfora longtime. was notalone,thatsheinthedark, shewasdeeplyloved. talking toher. Ithinkhearingisoneofthelastthingstogoandwantedher keephearingshe and texting….shewassurrounded byasmuchlove asshecouldhavebeen.Acoupleofuskept I’d tellherwhowasphoning though shecouldn’t respond. her arm, able to make jokes even We were allthere, abletostroke family were there. it tobe:inthesensethatallher was probably howshewanted where shewantedittobe butit was abeautifuldeath.Itwasn’t night, andIthinkintheendit sister wasabletostayoverat cleared abigroom forus,her care facilitywasverygood: they been veryhard. Thepalliative house fullofpeoplewouldhave Just managing(hercare) witha she wasfrom alarge family…. the bestdecision,because I thinkintheenditwasprobably days later, shediedthere. was thatitjusttogetthingsrecalibrated andshe’dbeabletocomehomebutinfact,three ambulance came,thechoicewasmadetosendherlocalpalliativecare facility. Myhope breathe afteraverylongnight,shelostconsciousness.Whenthe lyingdownandonemorning, In theendthatdidn’t workout.We wouldoftensitupatnightbecauseshefoundithard to Cath wantedtodieathomeandwemadeasmanyarrangementscouldforthathappen. loving me,talkingwithmeandstroking myarm,ratherthantoiletingandbathingme. for myselformyfamilyandfriends.Iwouldratherfriendshadenergy tofocuson at homeandIcanseethatwouldworkforsomepeople,butit’s notsomething Iwouldchoose important. ButI’mquitehappytodieinapalliativecare facility. Iknowthere’s apush forustodie I can,thatwouldbegreat –itmeansIcankeepmylittledogTimmybesideme,andthat’s really friends tolookaftermewhentheprofessionals candothat.IfIstayathomeforaslong Julie Morgan: Idon’t wanttodieathomebecauseIdon’t wantto putpressure onfamilyand place andwhy? less than15percentdo).ButJulie,you’vesaidyoudon’t wantto.What’s yourpreferred AroundMarie McInerney: 70percentofAustralianssaytheywanttodieathome(although Julie Morgan,withherfriendCath(L) #17APCC 79 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing feedback from delegates. on more presentations anddiscussions,includingradicalnewunderstandingaboutpain This finalpostinCroakey Conference NewsService coverageoftheconference wrapsreports important misunderstandingsaboutpalliativecare. also revealed significantgapsinthebasics–includinghowwetalkabout deathanddying, But forallthetechnicaladvancesthatmayhelp usdealwithendoflifematters,theconference suggestion attheAustralianPalliativeCare Conference . Aged care doctorsmaysoonbemakinghousecalls inAustraliaviahologram–atleastthatwasa palliative careconference. Plus#17APCCselfies Wrapping some “life-changing conversations” from #17APCC  http://bit.ly/2fri3Rn 80

You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing down thelocalservice,shesaid. – includingbeingableto“rate”carers, interest andisbattingbackinternational untiltheybed It’s notconnectedtotheglobalrideshare andfooddeliverybusiness,buthassomeofitsfeatures demand” totheelderlyorsick. Sullivan saidtheSouthAustralianbusinesswastransforminghomecare byproviding “carers on The samesessionfeatured anewUber-style disruption.Ubercare generalmanagerRenae offer aglimpse,however. weeks awayfrom doingamajorreveal”. ThisUnitedStatesstoryabouta“virtualcare clinic”may Its mediapersonwouldonlysaytheWestern Australiancommunityhealthprovider is“acoupleof innovative waysofcaringinourcommunities’. than thebriefmentionbyitsCEOChrisMcGowanatconference’s finalsessionon‘Building Western Australia’s SilverChainGroup didnotwanttosaymore aboutitshologramhealthplan people tostaylongerintheirhomes. It lookslikewesoonmaybeabletobeamindoctorsforhologramhousecallshelpelderly writes: Marie McInerney #17APCC 81 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing what theysawasthebarriers forpatientsandfamilies,notthefamiliesthemselves. Most previous studies,shesaid, hadsurveyedpalliativecare andotherhealthpractitionerson to deathcurrently 25days). engagement withpalliativecare inAustraliaandoftenlatefirstengagement(withthemediantime with patientsadvancedcancerandtheirfamilies,touncoversomeofreasons behindvariable Collins toldtheconference thestudywassetuptoexplore initialperceptions ofpalliativecare Collins from theVictorian Comprehensive CancerCentre’s PalliativeMedicineResearch Group. Most ofusalsodon’t fullyunderstandwhatpalliative care is,according toastudyledbyAnna Not justaplacetowaitfordeath Watch thecommunitypaneldiscussion here. “We are adeath-denyingsociety,” shesaid. many attheconference, someonehad“takenadirtnap”. dying, weoptfortheeuphemisms:“hepassed…hewenttoabetterplace”and,newone Ironically, shesaid,weare happytosayweare “dyingforapee”butwhenitcomestosomeone don’t reveal apregnancy for12weeksincasetheylosethebaby. questioned whythere remains suchstigmaaround miscarriagethatprospective parents often out ofthecloset.Sheremembered that,asamedicalstudent,sherarely sawdeadbodiesand The authorofWe’re AllGoingtoDie,Kaminskiisalsoabigchampionofgetting“theDword” Compassionate Communitiesmovement. Project whichhosts#DyingToKnow daysandistheAustralianbaseforglobal with amarkersuchasnativetree orjustalocationidentifiedonmap)andtheGroundswell They includedgrowing interest innaturalburialgrounds (beingburiedinanaturalenvironment to improve “deathliteracy”inthecommunity. “But real deathhappensoffstagealotofthetime,”shetoldpanelsessionthatlookedatways box office,”authoranddoctorLeahKaminskitoldtheconference. We knowfrom goryandgruesomeshowslikeGameofThrones thatdeathis“abest-sellerinthe Death-denying #17APCC 82 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing treatment.” to do,“theresult ofamedical teamwhichfocusesonyourqualityoflifeaswell asyourmedical Better imageswouldbe takenoutsideofhospitals,andapersondoingthingstheymight like “is inlinewiththeevidenceforwhatwedoand the fullscopeofservicesweoffer”. Collins challengedpalliativecare servicestomakesure thattheywaypresent theirownwork nursing care, deathinhospital,imminentand“just”comfortcare. It’s understandablethen, shesaid,thatpeoplehaveimpressions ofdependency, slowdeath, • • • Their perceptions fellwithinthree themes: experienced it. was alittlesurprisedathownarrowly andnegativelymostregarded palliativecare before they Collins expectedthattheresults wouldreveal gapsinknowledgeandunderstanding,butshe She showedaslideofthefirst20imagesthatcameupwhensheGoogledpalliativecare. What’s notsurprisingthough,Collinssaid,ishowtheymightgetthoseviews. Collins said:

sometimes confusedorseeninoppositionwithvoluntaryeuthanasia. Diminished choice:seeingitas“institutionalised”dying,atimeoflimitedchoiceforcare, and dependency. Diminished possibility:seeingitas“aplacetowaitfor death,“theendoftheline”,atime treatment onlyabout basicpainrelief. alternative, Diminished care: seeingitasnon-medicallyfocused,exclusivelynursingcare, a“lesser” behind it.” provided inthecommunity, notseenascareprovidedbyateamwithmedicalspecialty It wasnotseen(aspalliativecareis)asatreatmentoption,thancanbe which theyunderstoodtobethefinaldaysreally. It wasbasicallyseenashospitaliseddying–thecarereceivedinhospitalwhiledying, #17APCC 83 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing euphemisms. was becausemanagement andstaffwere veryopento talkingaboutdeath,theydidn’t use Pieters-Hawke saidone ofthereasons thefamilychose theagedcare facilitythat itdid necessarily havetobebad”. What shetookoutofthat,toldtheconference, wasthat “deathmightbesadbutdoesn’t “It wasaprecious, precious experience.” Alzheimer’s Australia,informedbyhermother’s experienceofdementia. being withMumattheendofherlife,”saidPieters-Hawke, whoisnowanambassadorfor “We knewmedicalexpertisewasthere inthebackground butourexperiencewasofpersonally were onhandifneeded. room withher, whileknowingthatadementiaspecialist nurseandpalliativecare specialistdoctor meals togetherandabottleofwineinherroom everynight,andwere abletosleepoverinthe For ninedays,theconference heard, thefamilywasabletositwithHazel.Theyenjoyedtakeaway care facilitywhich,“unusually”, hadstrong integratedpalliativecare. privileged tohavewiththedeathofhermother, HazelHawke,wholivedherlastdaysinanaged Sue Pieters-Hawketoldtheconference aboutthe“amazingexperience”thatshehadbeen Bust thetaboos Medicine. A fullpaperofherstudyfindingsisexpectedtobepublished intheOctobereditionofPalliative elements andcharactersofstoriesresonate more. – bydoctors,carers andpatients,exploringbothevidenceexperiences,tofindoutwhat In response, sheisdevelopingshortstoriesaboutpalliativecare toldfrom different perspectives hands!” shesaid. “It’s notabouthospitalandit’s notaboutabedinthefinaldaysandit’s notabout“just”holding #17APCC 84 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing someone inacertainway,” shesaid. “It’s notjustaskillsbase, where tomoveatrolley youlearn from here tothere, ortofeed priority thathasbeenraisedwithAgedCare MinisterKenWyatt. Ilsa Hampton,CEOofMeaningfulAgeingAustralia saidstrengthening the workforce isamajor the CertificateIIIinAgedCare nolongerdeemspalliative care tobeacore subject. Training andworkforce skillsare alsoabigissue,likelynot assistedbyEmerson’s revelation that day basedoncertainresident characteristicsistherightway. A newfundingmodelisalsoontheagenda,questioningwhethercurrent dollaramountper palliative care servicesandGPsare “patchy” across Australia. That’s particularlyso,thepanelistsagreed, whengoodarrangementswithspecialistcommunity complex care”, HelpingHandAgedCare director SusanEmersonsaid. on maximumfundingof$212aday–“notanenormousamountmoneytoprovide extremely That raisesbigfundingandworkforce issuesforthesector, whichonepanelistsaid operates combined. more cancerdeathsnow occurring inagedcare inSouthAustraliathanhospicesandathome Palliative care physicianDrRogerHuntsaidtheyhave become“slowstream hospices”,with Sparrow said: profile ofpeoplewhogointoagedcare, to towhichthesectorisstilllearning respond. Sparrow, NationalCEOofAgedandCommunityServicesAustraliatalkedaboutthechanging In aplenarypanelsessionontheneedforpalliativecare tobe“core business”foragedcare, Pat that theagedcare sectoris“illequipped”forendoflifecare. Her experience,however, isnotroutine. Arecent Productivity Inquiry intoendoflifecare found experience,” shesaid. to allwhocontributedinsomanywaysthatbeingsadbutameaningfulandprecious “There’s asenseofjoyabouthowithappenedthathasleftmesadshe’s gonebutsograteful person whoisdying,butalsoforourselvesandeachother.” “Taking thetaboooutofit,sowecanbeemotionallypresent, availableandsupportiveforthe ‘The Dword’ outofthecloset,”shesaid. “There are alotofconversationstobehadinfamilies, inthemedicalprofession, aboutgetting or beingunprepared, ofhavingtomakedecisionsunderpressure. The family was also driven by wanting to reduce unnecessary suffering that comes from ignorance but alsoforrecuperation,afterwhichtheycangobackhome.” They alsostayformuchshorterperiods,somejust24hours,oftenbecauseofdeath Residents aremucholdernowwhentheygoin,withmorecomplexhealthconditions. just notthecaseanymore. They usedtobebuiltwithcarparksbecauseresidentswoulddriveinandout,butthat’s #17APCC 85 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Watch theconference paneldiscussiononagedcare here . when youmeetcomplexitiesinfamiliesorculturalsituations, you’re betterprepared torespond.” have thathappening,peopleare more abletomore flexible,notsorulesbasedortask based so “It’s avocationalthing,itactuallyhastoinvolveyourwholepersoninorder todoreally well.Ifyou #17APCC 86 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Hutchinson. Also watchtheconference paneldiscussiononpainmanagement,whichincludedProfessor Read more abouthiswork here andhere. It’s anapproach thatcouldopenuptreatment ofdebilitatingchronic pain. glia –immunecellsthatsupportthebrain’s nervoussystem. BioPhotonics inAdelaide,outlinedthetheorybasedonconnectionbetweenchronic pain and Nuroscientist Professor MarkHutchinson,Director oftheARCCentre ofExcellencefor Nanoscale actually changethecellularprocesses associatedwithpain. immune systemthatsuggests“talk-based”therapies–likecognitivebehaviouraltherapy Delegates were alsowowedbyradicalnewthinkingaboutthelinkbetweenpainandbrain’s Unraveling themysteriesofpain #17APCC – can ­ 87 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Tweet reports #17APCC 88 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing need occursooften. Russell (onpalliativecare triage) wasthemostexcitingasissuessurrounding theassessmentof Danielle: LieseGroot-Alberts’ sessionwasthemostinspiring,whilekeynoteBeth talkbyDr Q2. Whatwere thestandoutpresentations andwhy? demonstrate us“walkingthewalk”. emphasising improving anindividual’s qualityoflife.Ourdefinitionneedstobealtered to is apartoflife,howeverwenegateincludingthe word ‘death’inourfield’s definition;instead Christopher: Palliativecare espousesforourcommunitytoincrease theiracceptancethatdeath and workcolleaguestobegintheconversationaboutethicsoffutiletreatment. Danielle: Mymainreflection from theconference isaround frailtyand workingwiththecommunity Q1. Whatisyourmaintakeaway/reflection from theconference? experiencing emotional/psychologicaldistress. providing assessmentand therapeuticsupporttopatientsandtheirfamilies/carers whoare Christopher Martin:ClinicalPsychologistwhoworksinaspecialistpalliativecare service, Kangaroo Island,coordinating inhomepalliativecare withinthecommunity. Danielle Bowden,Registered Nurse,workingacross community, acuteandagedcare settingson messages, andwhattheconference hasputontheiragendas: Croakey thanksthefollowing delegatesforproviding theirfeedbackonhighlights,take-home Hearing from delegates #17APCC 89 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Keynote speakers Selfies andsnaps Therapy forpalliativecare patientsandtheirfamilies/carers. Iimaginethiswilltakeupsometime! to commenceaPhDthatexplores thepotentialbeneficial role ofAcceptanceandCommitment Christopher: There hasbeenlimitedresearch in ‘talktherapy’withinpalliativecare, soI’mhoping my palliativecare areas offocusforthenextyear. setting andstartingaconversationaround recognising frailtyandwhatisfutiletreatment willbe Danielle: IntegratingPCOC(PalliativeCare OutcomesCollaboration)toolswithintheinpatient months? Q3. Whatchange/challengewillmostoccupyyourworkinpalliativecare overthenext12 understanding andemphasisedthedualbenefitfrom medication&‘talktherapy’. field duringhiskeynote.Professor MarkHutchinson–highlighted recent advancesinchronic pain Christopher: DrAlexJadad–helpedustostepbackandconsidertheunderlyingmotivesofour #17APCC 90 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Read abouttheaward winnershere. #17APCC 91 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing #17APCC 92 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing #17APCC 93 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing #17APCC 94 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing Warm thankstoallwhohelped share the#17APCC newsviaTwitter andsocialmedia. #17APCC 95 You can track Croakey’s coverage of the conference here. conference. Plus#17APCC selfies conversations” from palliative care Wrapping some“life-changing • • • Croakey Conference NewsService more than30millionTwitter impressions and950participants. The #17APCCTwitter transcriptcanbe read here andtheanalyticsare here (andbelow),showing

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