Witham Gary and Galvani Sarah and Peacock Marian (2019) End of lifecare for people who use alcohol and other drugs findings from a RapidEvidence Assessment Health and Social Care in the Community 5 pp637-650 ISSN 0966-0410

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DOI httpsdoiorg101111hsc12807

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Health Soc Care Community 2019001ndash14 emsp|emsp1wileyonlinelibrarycomjournalhsc

Received17December2018emsp |emsp Revised2June2019emsp |emsp Accepted17June2019DOI 101111hsc12807

R E V I E W A R T I C L E

End of life care for people with alcohol and drug problems Findings from a Rapid Evidence Assessment

Gary Witham1 emsp| Sarah Galvani2emsp| Marian Peacock3

ThisisanopenaccessarticleunderthetermsoftheCreativeCommonsAttributionLicensewhichpermitsusedistributionandreproductioninanymediumprovidedtheoriginalworkisproperlycitedcopy2019TheAuthorsHealthandSocialCareintheCommunityPublishedbyJohnWileyampSonsLtd

1DepartmentofNursingManchesterMetropolitanUniversityManchesterUK2DepartmentofSociologyManchesterMetropolitanUniversityManchesterUK3FacultyofHealthampSocialCareEdgeHillUniversityOrmskirkUK

CorrespondenceGaryWithamDepartmentofNursingManchesterMetropolitanUniversityBrooksBuildingBirleyCampus53BonsallStreetManchesterM156GXUKEmailgwithammmuacuk

Funding informationBigLotteryFund

AbstractPeoplewhousealcoholandotherdrugs(hereafterldquosubstancesrdquo)andwhoareovertheageof40arenowmore likely todieofanon‐drugrelatedcausethanpeoplewhousesubstancesundertheageof40ThispopulationwillthereforepotentiallyneedgreateraccesstopalliativeandendoflifecareservicesInitiallythepurposeofthisrapidevidenceassessment(REA)conductedAugust2016ndashAugust2017wastoexplorethepeer‐reviewedevidencebaseinrelationtoendoflifecareforpeoplewithproblematicsubstanceuseThefollowingdatabasesweresearchedusingdateparametersof1January2004ndash1August2016AmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocialCareOnlineWebofKnowledgeWebofScienceSSCISamshaNIAAADatawereextractedusingapredefinedprotocolincorporat‐inginclusionandexclusioncriteriaGiventhedearthofevidenceemergingoninter‐ventionsandpracticeresponsestoproblematicsubstanceusetheinclusioncriteriawere broadened to include any peer‐reviewed literature focussing on substanceusespecificallyandendof lifecareTherewere60papers thatmet the inclusioncriteriaThesewerequalityassessedUsingatextualthematicapproachtocatego‐risefindingspapersfellintothreebroadgroups(a)painmanagement(b)homelessandmarginalised groups and (c) alcohol‐related papers In general this small anddiverseliteraturelackeddepthandqualityThepaperssuggesttherearechallengesforhealthandsocialcareprofessionals inmeetingtheendof lifeneedsofpeoplewhouse substancesAddressing issues like safeprescribing forpainmanagementbecomesmorechallenginginthepresenceofsubstanceuseandrequiresflexibleser‐viceprovisionfrombothalcoholdrugservicesandendoflifecareprovidersWorkisneededtodevelopmodelsofgoodpracticeinworkingwithco‐existingsubstanceuseandendoflifeconditionsaswellasprevalencestudiestoprovideawidercontextforpolicydevelopment

K E Y W O R D S

addictionalcoholdrugsendoflifecarepalliativecareRapidEvidenceAssessment

2emsp |emsp emspensp WITHAM eT Al

1emsp |emspBACKGROUND

In the last 20 years there have been numerous changes evidentamong the populationwho use substances whether this be alco‐hol or other drugs Themost important changes appear to be anincrease in the number of older drugs users a subsequent rise inrates of death from non‐drug related conditions (Beynon 2010)anincreaseinalcohol‐relatedmorbidityamongolderusers(Kaplanetal2012)and theburgeoningofNewPsychoactiveSubstances(NPS) use The increase in older drug users may be associatedwith changes to the treatmentmanagement for illicit opiateusersin the1990rsquos (McKeganey2006) and inparticular theexpansionandgreateravailabilityofmethadoneprescription (Clausen2008ClausenWaalThoresenampGossop2009)Thisincreasedavailabil‐itymeansthatincreasingnumbersofpeoplewithcurrentandprevi‐oussubstanceusehavebettersurvivalratesandaremorelikelytodiefromthesamechronicconditionsthataffectthegeneralpopu‐lation(Corkery2008Beynonetal2010)Itmaybethatsomeofthispopulationareusingsubstancesforlongerorcommencingdruguselaterinlifebutwhateverthecausetherehasbeenanincreasein older drug users accessing drug treatment services in the UK(Beynon2010Beynonetal2010)

Beforemethadonetreatmentprogrammeswereintroducedpeo‐plewhousedsubstanceshadagreaterriskofdyingfromoverdoses(deliberateoraccidental)aswellasaccidentsviolenceanddiseaseThesecouldberelatedtothesubstanceitselforitsrouteofadmin‐istrationsuchasliverdiseaseHIV(HumanImmunodeficiencyVirus)and bacterial infections (Gibson et al 2008)The adoption of evi‐dence‐basedinterventionslikesupervisedinjectingfacilitiesneedleexchangeprogrammesandoutreachprogrammesforillicitdrugusersisconsideredtobeaneffectiveoverarchingpolicyapproachforre‐ducingharm(RitterampCameron2006)Harmreductionpoliciesandrelatedtreatmentapproacheshaveledtooldersubstanceusers(overthe age of 40) nowbeingmore likely to die of a non‐drug relatedcausethanpeopleusingsubstancesundertheageof40(Benyonetal2010Stenbackaetal2008)Howeverpeopleusingsubstancesarestillmorelikelytodieatanearlieragethanthegeneralpopulationandhavepatternsofdiseaseandmorbidity that reflect the impactof substanceuseor the traumatic lifeexperiencesmore frequentlyencountered in this group (BeynonRoeDuffyampPickering 2009Beynonetal2010) Inaddition therearehigher ratesofalcohol‐relatedmorbidity andmortality associatedwith chronic and acutealcohol problems (Chang KreisWong Simpson amp Guymer 2008Shield Parry amp Rehm 2014Taylor et al 2010) This highlights amorenuancedpictureof alcohol‐relatedharmgiven that thehigh‐est consumption is amongmore affluent groups of the population(OfficeforNationalStatistics2017)butthehighestratesofalcohol‐relatedproblemsareamongtheleastaffluent(ErskineMaheswaranPearsonampGleeson2010)

ThefinalsetofchangesistheincreaseintheuseofNPSSomeofthemoreimmediateconsequencesofNPSuseareevidentintheprisons system and in admissions to hospital accident and emer‐gencydepartmentsforacuteintoxication(LiakoniDolderRentsch

ampLiechti 2016RalphsWilliamsAshewampNorton2017) Theseharmfulconsequencesareparticularlyassociatedwithpeoplewhoare homeless (Henshall et al 2018) The impact of NPS use onmortalityandmorbiditybothmediumandlong‐termhasyettobeevaluated

While there has been an improvement in life expectancywithinthegeneralpopulation ithasbeenassociatedwithmoreyearslivingwithpoorhealthordisabilityattheendoflife(BellampMarmot2017)Thishassubsequently increasedtheanticipatednumberofdeathsthatarelikelytoneedpalliativeandendoflifecare (Etkindet al 2017) There appears tobeonly fragmentedevidencerelatingto (a) theextentandnatureof thecareneedsby people using substances and (b) the challenges serviceswillfaceinsupportingpeoplewithproblematicsubstanceuseattheendof lifeThisRapidEvidenceAssessment (REA)aimed toex‐plorewhatisalreadyknownaboutresponsestoendof lifecareneedforpeopleusingsubstanceandidentifygapsintheevidencebaseItformsonepartofawiderprogrammeofresearchonendof lifecare forpeoplewithproblematic substanceuse (GalvaniTetleyetal2016)

11emsp|emspConceptual framework

Within the current literature discrete definitions of palliative asopposed to end of life care are ambiguous and indistinctwith au‐thorsofteninterchangingbetweenthetwotermsForthisREAweexplored the existing theoretical literature and sought advice fromexperts in the fieldWebased thedefinitionofpalliative care on a combination of World Health Organisation (WHO) guidelines andpart of a definition used by the EuropeanAssociation of PalliativeCare(EAPC)

What is known about this topicbull There isan increase inolder substanceuserswhowillrequireendoflifecare

bull Meetingendof lifeneedsforthisgroupofpeoplewillrequireflexibleserviceprovision

bull Problematic substance users often present with com‐plex social andmedical problems thatmake accessingformalised end of life care services more difficult tonavigatethanotherpopulations

What this paper addsbull This paper identifies and documents the limited evi‐dencebasethatexistsonendoflifecareforpeoplewithsubstanceproblems

bull It identifiesgaps in theevidence relating to focusandmethodology

bull Itidentifiesexamplesofgoodpracticeandhighlightsfu‐turedirectionsforresearch

emspensp emsp | emsp3WITHAM eT Al

Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath

End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence

2emsp |emspMETHODS

21emsp|emspAims

Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims

1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems

2 Toidentifygapsintheevidencerelatingtofocusandmethodology3 Toidentifyexamplesofgoodpracticeandtohighlightfuturedi‐rectionsforresearch

22emsp|emspDesign

ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding

lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)

Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings

23emsp|emspSearch methods

ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life

TA B L E 1 emspFinalsearchterms

Keysearchterms

Endoflifepalliativedyingdeathlifelimitinglifethreatening Drugmisuseabuseusesubstanceusemisuseabusemedicationuseorabusealcohol

4emsp |emsp emspensp WITHAM eT Al

careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation

TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)

ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA

Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)

24emsp|emspData extraction and synthesis

Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist

produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper

25emsp|emspQuality appraisal

The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency

Theempiricalstudiesintheevidencebasewerescoredonallsixcriteriaonathree‐pointscalereflectingtheextenttowhichthestud‐iesfollowedgoodresearchpractice3=noconcerns2=someminorconcerns1=majorconcernsThisresultedinascorerangingfrom6to18foreachstudyStudieswerethenassignedaqualitycategoryofhighmoderateorlowbasedontheirscoreItisimportanttonotethatalowormoderateldquoqualityrdquoratingdoesnotimplythatastudywaspoorlydesignedorexecutedanddoesnotsuggestthatitsconclusionsareincorrectorunreliableItcansimplymeanthatthereportofthestudydidnotfullyexplainitsdesignormethods

3emsp |emspFINDINGS

Theinitialsearchofpeer‐reviewedarticlesresultedinalargenum‐berofpapersThe inclusionandexclusioncriteriawereappliedatabstractandfulltextreadingstages(seeFigure1below)

Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers

Allempiricalstudies(n=32)referredtointhisREAwerescoredaccordingtotheDFID(2014)guidance(Table3)Table3summarisestheevidencebasefoundforthisREAintermsoftypesofstudyandquality

ThemajorityofpapersfoundwerepublishedinthelastdecadeandwereNorthAmerican(USAorCanadian)inoriginJustoverhalfwerebasedonempirical researchofsomekindwithmorequanti‐tativedatathanqualitativedatapresentedThegreaternumberofjournalarticlescomparedtoothersourceswasaresultofoursearchstrategywhichfocussedonpublishedresearchAswithothernewareasofresearchforexamplesightlossandsubstanceuse(GalvaniLivingstonampMorgan2016) therewereanumberofclinicalcasestudiespresentedintheliteratureThefinallistofpapersisincludedattheendofthispaperinTable4

TA B L E 2 emspCodingtable

A Isnotrelatedtopalliativeorendoflifecare

B Isnotrelatedtosubstanceuse

C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse

D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks

E Doesnotmeettheabovebutisofinterestandrelevance(setaside)

emspensp emsp | emsp5WITHAM eT Al

31emsp|emspThematic groups

Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology

32emsp|emspPain management

Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015

Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)

In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician

F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits

n = 4384

First screening of tles Total removed

n = 4232

Second screening of abstracts

Total removedn = 82

Not about sub use n = 25Not about EOL care n = 36

Neither about sub use or EOL n = 21

Full text readingTotal removed

n = 10

Not about sub use n = 6Not about EOL care n = 2

Neither about sub use or EOL n = 2

Final sample for inclusionn = 60

Not about sub use or EOL n = 4232

6emsp |emsp emspensp WITHAM eT Al

33emsp|emspHomeless and marginalised groups

Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)

34emsp|emspHomeless populations

The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006

Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)

F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare

Date (n = 60) (date parameters 2004-2016)

2004-2008 (n = 12) 202009- 2012 (n = 23) 3832013-2016 (n = 25) 416

Country (n = 60)USA (n = 34) 567 Canada (n = 12) 20

UK (n = 9) 15Australia (n = 3) 5

Italy (n = 1) 16Sweden (n = 1) 16

Type of Publication (n = 60)Journal Article (n = 58) 967

Book chapter (n = 2) 32

Content (n = 60)Pain management (n = 25) 416 Homelessness and marginalised

groups (n =24 ) 40Alcohol related (n = 6 ) 10

Other (n = 5) 83

EmpiricalUnempirical (n = 60)Empirical (n = 32) 533

Unempirical (n = 28) 466

QualitativeQuantitativeMixed Methods (n = 32)

Qualitative (n = 11) 343Quantitative (n = 21) 656

Mixed (n = 0)

Type of Study (n = 32)EMPIRICAL

Cross sectional (n = 6) 187Focus groups (n = 2) 62

Interview (n = 9) 281Survey (n =6) 187

Retrospective Chart review (RCR) (n = 9) 281

Type of Study (cont)UNEMPIRICAL (n= 28)

Case study (n =10) 357Description of practice (n =8) 285

Literature review (n = 5) 178Systematic review (n=3) 107

Book chapter (n=2) 71

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

emspensp emsp | emsp3WITHAM eT Al

Palliative care is an approach that improves thequality of life of patients and service users facingthe problems associated with life‐threatening ill‐ness through the prevention and relief of sufferingbymeansofearlyidentificationandassessmentandtreatmentofpainandotherproblemsphysicalpsy‐chosocialandspiritualItalsoprovidescaretofamilymembers friendsandcarersofpatientsandserviceuserstorecognisetheirneedforsupportintheirownrightandaswellastosupportthemtocarefortheirrelativeor lovedonePalliativecareaffirms lifeandregardsdyingasanormalprocessitneitherhastensnorpostponesdeathItsetsouttopreservethebestpossiblequalityoflifeuntildeath

End of life caredefinitionscanhavelimitedclinicalutilitysincerecognisingdyingisdifficulttoassessorpredictwithmanychronicconditionsForthisREAourendof lifedefinitionremainssimilartothepalliativecaredefinitionbutthetimescaleisreducedtothelast12monthsoflife(GeneralMedicalCouncil2010)ForthisREAweexcludedtobaccoandcaffeineDrugsreferstoillicitdrugsandthemisuse of prescriptionmedication Substance usewe initiallydefined as current or previous problematic alcohol or other druguse(prescribedorillicit)whilereceivingpalliativeorendoflifecareHoweverthedearthofliteratureresultedinthedefinitionchangingtoincludeanyalcoholordruguseratherthanproblematicuseex‐ceptweretainedproblematicprescriptiondrugusetoensureman‐ageabilityoftheevidence

2emsp |emspMETHODS

21emsp|emspAims

Thequestiontobeaddressedwaswhatdoestheexistinginterna‐tionalresearchandwiderliteraturetellusaboutcurrentresponsestoendoflifecareforpeoplewithsubstanceproblemsThequestionfocussed initially on care responses andwas broken down furtherintothefollowingaims

1 Toexploreanddocumenttheevidencebasethatalreadyexistson responses to end of life care for people with substanceproblems

2 Toidentifygapsintheevidencerelatingtofocusandmethodology3 Toidentifyexamplesofgoodpracticeandtohighlightfuturedi‐rectionsforresearch

22emsp|emspDesign

ARapidEvidenceAssessment (REA)methodologywas identifiedas themostappropriate research tool touse toenablea speedyidentification of key pieces of evidence This would inform ourwiderstudyandprovideareferencedocumenttounderpinfurtherworkon this topic in policy or practiceREAs canbedefined asproviding

lsquohellipamorestructuredandrigoroussearchandqualityassessmentof theevidencethana literaturereviewrsquobutonecritique is that ithasnarrowerparametersandisnotldquoasexhaustiveasasystematicreviewrdquo (Department for InternationalDevelopment (DFID) 2017online) REAs therefore stem fromSystematic Reviewmethodol‐ogythathistoricallyfocusoninterventionsandtheireffectivenessusingexperimentalorquasi‐experimentalresearchdesignBycon‐trastREAsareusedtogainanoverviewoftheprevalenceandqual‐ity of evidence focusing on topic areas to support commissioningorprogrammingdecisions and identifyingevidencegaps requiringfurtherresearch (DFID2017online)AnREAisconductedwithinashorter timeframethanaSystematicReviewbut retains thekeycharacteristicsofsystematicreviewtransparencyreplicabilityandcomprehensiveness (Government Social Research (GSR) and EPPICentre2009GalvaniampForrester2011GSR2013)

Ourinitialgoalwasestablishingiftherewereanyinterventionsfor this group As the review proceeded the lack of a cohesivebody of evidence to answer the research questions indicated be‐cameclearThereforeacombinationofaREAandsystematicmap‐ping methodology (Clapton Rutter amp Sharif 2009) was adoptedSystematicmapsaimtodescribetheexistingliteratureandgapsinthe literature in a broad topic area and the literature quality andcontentcanbeanalysedindepthormoresuperficiallyasappropri‐ate to individualprojects (Claptonet al 2009p11)The reviewthereforewasconductedwiththerigourofplanningandapproachofanREAHoweverasa resultofourexperienceconducting theREAandthediversityofthe literaturefound italsoencompassedsystematicmappingofthereviewsfindings

23emsp|emspSearch methods

ThisREAwasan iterative review the findingsofwhich sought tosupportthewiderprogrammeofresearchofwhichitwaspartToensureitdidsofiveseparateprotocolsweredevelopedfortheini‐tial searches that spokedirectly to the focusof theother strandsoftheresearchThefirstprotocolexaminedtheprevalence and in‐cidenceofpalliativeendoflifecareandco‐existingsubstanceuseproblematic substance use The second reviewed interventions forpeopleusingalcoholorotherdrugswithco‐existingendoflifecon‐ditions and their families carers friends The third examined thepersonalfamilysocial experienceschallengesandopportunities forpeopleusingalcoholorotherdrugswithco‐existingendoflifecareconditions The fourth and fifth searches focused on bothprofes‐sionalclinicalpractice challengesconcernsforpractitionerssupport‐ing thoseusingalcoholorotherdrugswithco‐existingendof life

TA B L E 1 emspFinalsearchterms

Keysearchterms

Endoflifepalliativedyingdeathlifelimitinglifethreatening Drugmisuseabuseusesubstanceusemisuseabusemedicationuseorabusealcohol

4emsp |emsp emspensp WITHAM eT Al

careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation

TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)

ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA

Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)

24emsp|emspData extraction and synthesis

Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist

produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper

25emsp|emspQuality appraisal

The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency

Theempiricalstudiesintheevidencebasewerescoredonallsixcriteriaonathree‐pointscalereflectingtheextenttowhichthestud‐iesfollowedgoodresearchpractice3=noconcerns2=someminorconcerns1=majorconcernsThisresultedinascorerangingfrom6to18foreachstudyStudieswerethenassignedaqualitycategoryofhighmoderateorlowbasedontheirscoreItisimportanttonotethatalowormoderateldquoqualityrdquoratingdoesnotimplythatastudywaspoorlydesignedorexecutedanddoesnotsuggestthatitsconclusionsareincorrectorunreliableItcansimplymeanthatthereportofthestudydidnotfullyexplainitsdesignormethods

3emsp |emspFINDINGS

Theinitialsearchofpeer‐reviewedarticlesresultedinalargenum‐berofpapersThe inclusionandexclusioncriteriawereappliedatabstractandfulltextreadingstages(seeFigure1below)

Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers

Allempiricalstudies(n=32)referredtointhisREAwerescoredaccordingtotheDFID(2014)guidance(Table3)Table3summarisestheevidencebasefoundforthisREAintermsoftypesofstudyandquality

ThemajorityofpapersfoundwerepublishedinthelastdecadeandwereNorthAmerican(USAorCanadian)inoriginJustoverhalfwerebasedonempirical researchofsomekindwithmorequanti‐tativedatathanqualitativedatapresentedThegreaternumberofjournalarticlescomparedtoothersourceswasaresultofoursearchstrategywhichfocussedonpublishedresearchAswithothernewareasofresearchforexamplesightlossandsubstanceuse(GalvaniLivingstonampMorgan2016) therewereanumberofclinicalcasestudiespresentedintheliteratureThefinallistofpapersisincludedattheendofthispaperinTable4

TA B L E 2 emspCodingtable

A Isnotrelatedtopalliativeorendoflifecare

B Isnotrelatedtosubstanceuse

C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse

D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks

E Doesnotmeettheabovebutisofinterestandrelevance(setaside)

emspensp emsp | emsp5WITHAM eT Al

31emsp|emspThematic groups

Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology

32emsp|emspPain management

Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015

Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)

In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician

F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits

n = 4384

First screening of tles Total removed

n = 4232

Second screening of abstracts

Total removedn = 82

Not about sub use n = 25Not about EOL care n = 36

Neither about sub use or EOL n = 21

Full text readingTotal removed

n = 10

Not about sub use n = 6Not about EOL care n = 2

Neither about sub use or EOL n = 2

Final sample for inclusionn = 60

Not about sub use or EOL n = 4232

6emsp |emsp emspensp WITHAM eT Al

33emsp|emspHomeless and marginalised groups

Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)

34emsp|emspHomeless populations

The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006

Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)

F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare

Date (n = 60) (date parameters 2004-2016)

2004-2008 (n = 12) 202009- 2012 (n = 23) 3832013-2016 (n = 25) 416

Country (n = 60)USA (n = 34) 567 Canada (n = 12) 20

UK (n = 9) 15Australia (n = 3) 5

Italy (n = 1) 16Sweden (n = 1) 16

Type of Publication (n = 60)Journal Article (n = 58) 967

Book chapter (n = 2) 32

Content (n = 60)Pain management (n = 25) 416 Homelessness and marginalised

groups (n =24 ) 40Alcohol related (n = 6 ) 10

Other (n = 5) 83

EmpiricalUnempirical (n = 60)Empirical (n = 32) 533

Unempirical (n = 28) 466

QualitativeQuantitativeMixed Methods (n = 32)

Qualitative (n = 11) 343Quantitative (n = 21) 656

Mixed (n = 0)

Type of Study (n = 32)EMPIRICAL

Cross sectional (n = 6) 187Focus groups (n = 2) 62

Interview (n = 9) 281Survey (n =6) 187

Retrospective Chart review (RCR) (n = 9) 281

Type of Study (cont)UNEMPIRICAL (n= 28)

Case study (n =10) 357Description of practice (n =8) 285

Literature review (n = 5) 178Systematic review (n=3) 107

Book chapter (n=2) 71

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

4emsp |emsp emspensp WITHAM eT Al

careconditionsandgood practice modelsandcarepathwaysinrela‐tiontothispopulation

TheseoriginalprotocolsforthereviewwereadaptedastheREAproceededduetothevery limitedrelevantdatageneratedbythemThisstrategyallowedustorefinethequestionsandthefocusoftheresearch once the reviewwas being conducted Subsequently thesearchtermswerebroadenedtocapturealltheliteraturewithinthisfieldwithinoursearchparameters(seeTable1below)

ThisstrategyisoneofthefeaturesofaniterativeasopposedtoanapriorireviewTwobroadgroupsofevidencewererelevantexistingresearch on palliative and end of life care and existing research onsubstanceuseThesearchprotocolneededtoensurethesebodiesofevidencewereincludedCommontoallfivesearcheswerethedata‐basesAmedPsycharticlesOvidAgeinfoMedlineEbscohostASSIASocial Care Online Web of Knowledge (including Social ScienceCitationsIndex)WebofScienceSSCISamshaNIAAA

Studiesreviewedwerepublishedinpeer‐reviewedjournalsbe‐tween 1 January 2004 and 1 August 2016 The rationale for thestartingdateparameterof2004wasthepublicationofkeyreportsconcerningendoflifeandpalliativecarethatyear(DepartmentofHealth2004National Institute forClinicalExcellence2004)Anadditional limiterwas that thepaperswerewritten inEnglishWeexcludedtobacco‐relatedstudiesExcludedpaperswerecodedA‐E(seecodingtablebelowinTable2)

24emsp|emspData extraction and synthesis

Given the dearth of intervention studies and the limited literaturefound through the initial searching a systematicmapping approachwasadoptedThisfacilitatesavisualmapoftheexistingliteratureonthebroadtopicofsubstanceuseandendoflifecareItalsoallowedcategorisationof theexistingevidence inanumberofways includ‐ing its methodology focus and country of origin Textual narrativesynthesis (Barnett‐Page ampThomas 2009)was used to explore anysimilaritiesdifferencesandrelationshipsbetweenpapersThetextualnarrativeapproachinvolvesacommentarydescribingstudycharacter‐isticscontextqualityandfindingsThiswasfacilitatedbyathree‐stepprocess(LucasBairdAraiLawampRoberts2007)including(a)studygroupinginwhichstudiesbelongingtoeachofthesub‐groupsforex‐amplepainmanagementoralcoholwereidentifiedwithtworesearch‐ers independently categorising and theming the papers (b)Themesproducedbyeachresearcherwerecomparedandaconsolidatedlist

produced(c)sub‐groupsynthesiswerethendevelopedIftherewereanydisagreementa third researcherwould reviewthepaperStudycommentarieswereproducedinanexcelfiletosummarisekeyaspectsofthepapersinrelationtothesub‐groupwithinwhichtheywerein‐cludedThisincludedbothkeyfindingsandorrecommendationsthatspeaktotheaimsofthisREAIntermsofqualitycontroleachcom‐mentarywasreviewedbyasecondresearcherindependentlytoassessthesummaryinrelationtotheoriginalpaper

25emsp|emspQuality appraisal

The quality of the individual studieswas assessed based on sixprinciplesderivedfromDFIDguidanceeachofwhichhaveanum‐berofqualityrelatedquestionswithintheprinciples(DFID2014)Thekeyprinciples are (a)Conceptual framing (b)Transparency(c) Appropriateness (d) Cultural sensitivity (e) Validity and (f)Cogency

Theempiricalstudiesintheevidencebasewerescoredonallsixcriteriaonathree‐pointscalereflectingtheextenttowhichthestud‐iesfollowedgoodresearchpractice3=noconcerns2=someminorconcerns1=majorconcernsThisresultedinascorerangingfrom6to18foreachstudyStudieswerethenassignedaqualitycategoryofhighmoderateorlowbasedontheirscoreItisimportanttonotethatalowormoderateldquoqualityrdquoratingdoesnotimplythatastudywaspoorlydesignedorexecutedanddoesnotsuggestthatitsconclusionsareincorrectorunreliableItcansimplymeanthatthereportofthestudydidnotfullyexplainitsdesignormethods

3emsp |emspFINDINGS

Theinitialsearchofpeer‐reviewedarticlesresultedinalargenum‐berofpapersThe inclusionandexclusioncriteriawereappliedatabstractandfulltextreadingstages(seeFigure1below)

Therewere60papersgeneratedfromoursearchafterapplyingtheinclusionandexclusioncriteriaTheywerehoweverextremelydiverse inmethodology focus and audience The systematicmap(Figure 2) illustrates the range of evidence found among the 60papers

Allempiricalstudies(n=32)referredtointhisREAwerescoredaccordingtotheDFID(2014)guidance(Table3)Table3summarisestheevidencebasefoundforthisREAintermsoftypesofstudyandquality

ThemajorityofpapersfoundwerepublishedinthelastdecadeandwereNorthAmerican(USAorCanadian)inoriginJustoverhalfwerebasedonempirical researchofsomekindwithmorequanti‐tativedatathanqualitativedatapresentedThegreaternumberofjournalarticlescomparedtoothersourceswasaresultofoursearchstrategywhichfocussedonpublishedresearchAswithothernewareasofresearchforexamplesightlossandsubstanceuse(GalvaniLivingstonampMorgan2016) therewereanumberofclinicalcasestudiespresentedintheliteratureThefinallistofpapersisincludedattheendofthispaperinTable4

TA B L E 2 emspCodingtable

A Isnotrelatedtopalliativeorendoflifecare

B Isnotrelatedtosubstanceuse

C Isnotrelatedtopalliativeorendoflifecareorsubstanceuse

D Notaboutpracticeorpathwaysprofessionalpracticeconcernsfamilyandsocialnetworks

E Doesnotmeettheabovebutisofinterestandrelevance(setaside)

emspensp emsp | emsp5WITHAM eT Al

31emsp|emspThematic groups

Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology

32emsp|emspPain management

Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015

Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)

In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician

F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits

n = 4384

First screening of tles Total removed

n = 4232

Second screening of abstracts

Total removedn = 82

Not about sub use n = 25Not about EOL care n = 36

Neither about sub use or EOL n = 21

Full text readingTotal removed

n = 10

Not about sub use n = 6Not about EOL care n = 2

Neither about sub use or EOL n = 2

Final sample for inclusionn = 60

Not about sub use or EOL n = 4232

6emsp |emsp emspensp WITHAM eT Al

33emsp|emspHomeless and marginalised groups

Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)

34emsp|emspHomeless populations

The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006

Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)

F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare

Date (n = 60) (date parameters 2004-2016)

2004-2008 (n = 12) 202009- 2012 (n = 23) 3832013-2016 (n = 25) 416

Country (n = 60)USA (n = 34) 567 Canada (n = 12) 20

UK (n = 9) 15Australia (n = 3) 5

Italy (n = 1) 16Sweden (n = 1) 16

Type of Publication (n = 60)Journal Article (n = 58) 967

Book chapter (n = 2) 32

Content (n = 60)Pain management (n = 25) 416 Homelessness and marginalised

groups (n =24 ) 40Alcohol related (n = 6 ) 10

Other (n = 5) 83

EmpiricalUnempirical (n = 60)Empirical (n = 32) 533

Unempirical (n = 28) 466

QualitativeQuantitativeMixed Methods (n = 32)

Qualitative (n = 11) 343Quantitative (n = 21) 656

Mixed (n = 0)

Type of Study (n = 32)EMPIRICAL

Cross sectional (n = 6) 187Focus groups (n = 2) 62

Interview (n = 9) 281Survey (n =6) 187

Retrospective Chart review (RCR) (n = 9) 281

Type of Study (cont)UNEMPIRICAL (n= 28)

Case study (n =10) 357Description of practice (n =8) 285

Literature review (n = 5) 178Systematic review (n=3) 107

Book chapter (n=2) 71

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

emspensp emsp | emsp5WITHAM eT Al

31emsp|emspThematic groups

Asthesystematicmapshowsthetopicfocusoftheevidencecouldbegroupedaroundthreemainthemespainmanagement(n=25)homelessandmiscellaneouspopulations(n=24)andalcohol‐relatedpapers (n = 6) In addition five remaining paperswere diverse infocusandmethodology

32emsp|emspPain management

Painmanagement was marginally the largest category to emergefromthepeer‐reviewed literatureThemajority (n=23)werefromtheUSAwiththeothersinglepapersfromCanadaandtheUKThestudiesrangedfromclinicalchartnotereviews(Barclaysetal2014Childersetal2015Kwonetal20132015Rowleyetal2011)tosmallscalecasestudyreviews(Arthuretal2016Burton‐MacLeodetal2008Farnham2012KirshampPassik2006Koyyalaguntaetal2011Kutzen2004WalshampBroglio2010)Therewasalsooneintegrated literature review (Carmichael et al 2016)examiningas‐sessmentandriskinrelationtoopioidmisusewithincancercareandtwosystematicreviews(Chouetal2009TaverosampChuang2016)Chouetal(2009)examinedopioidmisuseinthecontextonnon‐can‐cerchronicpainandTaverosandChuang(2016)examinedpainman‐agementstrategiesforpeopleonmethadonemaintenancetherapyFivestudiesusedstructuredquestionnairesaspartoftheirapproach(Blackhalletal2013ChildersampArnold2012Knowltonetal2015

Williamsetal2014Tanetal2014)Theremainingfivepapersweredescriptions or discussions of practice (Krashin et al 2012 2015Passiketal2009PancariampBaird2014Riesfieldetal2009)

In terms of the populations of interest the majority of pa‐pers(n=13)werewithinacontextofpainincancercare(Arthuret al 2016 Barclay et al 2014 Burton‐MacLeod et al 2008Carmichael et al 2016 Childers et al 2015 Kirsh amp Passik2006Koyyalaguntaetal2011Kwonetal20132015Passiketal2009Rowleyetal2011TaverosampChuang2016Walshamp Broglio 2010) One study examined pain in prison popula‐tions (Williams et al 2014)whilst Kutzen (2004) andKnowltonet al (2015) focusedonpain in thecontextofHIVdiseasewithKoyyalaguntaetal(2011)alsoexploringasubsetofHIVpatientsThe other studies examined problematic substance use from ageneralpalliativecarecontext(ChildersampArnold2012Farnham2012Krashinetal2015PancariampBaird2014Riesfieldetal2009Tanetal2014)withtwostudiesfocussingonchronicnon‐cancerpain(Chouetal2009Krashinetal2012)Anumberofpapers acknowledged both the complexity of painmanagementand persistent issues of under‐treatment of patients with sub‐stancemisuse issues (Farnham2012Koyyalaguntaetal2011Krashinetal2015Kwonetal2015Lum2003Passiketal2009Rowleyetal2011WalshampBroglio2010Williamsetal2014) This ledmost papers to emphasise theneed for compre‐hensiveassessmentasanessentialstepinmanagingpaininpeopleusingsubstancesrequiringactiveengagementfromtheclinician

F I G U R E 1 emspReviewprocessfrominitialsearchtofinalsampleofpapers Total number of hits

n = 4384

First screening of tles Total removed

n = 4232

Second screening of abstracts

Total removedn = 82

Not about sub use n = 25Not about EOL care n = 36

Neither about sub use or EOL n = 21

Full text readingTotal removed

n = 10

Not about sub use n = 6Not about EOL care n = 2

Neither about sub use or EOL n = 2

Final sample for inclusionn = 60

Not about sub use or EOL n = 4232

6emsp |emsp emspensp WITHAM eT Al

33emsp|emspHomeless and marginalised groups

Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)

34emsp|emspHomeless populations

The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006

Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)

F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare

Date (n = 60) (date parameters 2004-2016)

2004-2008 (n = 12) 202009- 2012 (n = 23) 3832013-2016 (n = 25) 416

Country (n = 60)USA (n = 34) 567 Canada (n = 12) 20

UK (n = 9) 15Australia (n = 3) 5

Italy (n = 1) 16Sweden (n = 1) 16

Type of Publication (n = 60)Journal Article (n = 58) 967

Book chapter (n = 2) 32

Content (n = 60)Pain management (n = 25) 416 Homelessness and marginalised

groups (n =24 ) 40Alcohol related (n = 6 ) 10

Other (n = 5) 83

EmpiricalUnempirical (n = 60)Empirical (n = 32) 533

Unempirical (n = 28) 466

QualitativeQuantitativeMixed Methods (n = 32)

Qualitative (n = 11) 343Quantitative (n = 21) 656

Mixed (n = 0)

Type of Study (n = 32)EMPIRICAL

Cross sectional (n = 6) 187Focus groups (n = 2) 62

Interview (n = 9) 281Survey (n =6) 187

Retrospective Chart review (RCR) (n = 9) 281

Type of Study (cont)UNEMPIRICAL (n= 28)

Case study (n =10) 357Description of practice (n =8) 285

Literature review (n = 5) 178Systematic review (n=3) 107

Book chapter (n=2) 71

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

6emsp |emsp emspensp WITHAM eT Al

33emsp|emspHomeless and marginalised groups

Thisgroupofpapersfocussedonpeoplewhoarehomelessorpre‐cariouslyhousedpeoplewithmentalhealthdifficultiesandpeoplewithHIV in thecontextofmultiple socialproblemsThreepapersaddressedmarginalisedpopulationsmoregenerally(Doukas2014Dzul‐Churchetal2010SulistioampJackson2013)

34emsp|emspHomeless populations

The majority of papers in this thematic group focussed on home‐lessandprecariouslyhousedpersons (Collier2011Dzul‐Churchetal2010Hudson2016KuselampMiaskowski2006MacWilliamsetal 2014McNeilampGuirguis‐Younger 2012a 2012bMcNeil et al2012aMcNeiletal2012bPageetal2012Podymowetal2006

Songetal2007a2007b)MostwerequalitativestudiesconductedinCanada(n=7)withfourfromtheUSAandonefromAustraliaandtwofromtheUKThefourpapersbyMcNeilandcolleaguesdrewonasin‐gleprimarypieceofqualitativeworktoexaminetheparticularneedsofhomelesspeopleincludingstaffexperiencesTheresearchlookedatgapsinservicesandproposedthatsomeofthesecouldbemetbyldquoshelter‐basedrdquopalliativeandendoflifecareTheworkofSongetal(2007a 2007b) and Podymowet al (2006) identified similar issuesfindingthatendoflifeadvanceddirectiveswereperceivedveryposi‐tivelybyhomelesspeopleincludingldquodonotattemptcardio‐pulmonaryresuscitationrdquoordersAsSongetal(2007a)commentparticipantsex‐pressedpreferencestoavoidldquoheroicinterventionsrdquowithadvancecareplanningbeing importantbecauseof their lsquohellipbelief thatEOLcare ispaternalisticandunresponsiveadvancecareplanningwasalsoseenasawaytomaintaincontrolrsquo(p437)

F I G U R E 2 emspSystematicmapSubstanceuseandendoflifecare

Date (n = 60) (date parameters 2004-2016)

2004-2008 (n = 12) 202009- 2012 (n = 23) 3832013-2016 (n = 25) 416

Country (n = 60)USA (n = 34) 567 Canada (n = 12) 20

UK (n = 9) 15Australia (n = 3) 5

Italy (n = 1) 16Sweden (n = 1) 16

Type of Publication (n = 60)Journal Article (n = 58) 967

Book chapter (n = 2) 32

Content (n = 60)Pain management (n = 25) 416 Homelessness and marginalised

groups (n =24 ) 40Alcohol related (n = 6 ) 10

Other (n = 5) 83

EmpiricalUnempirical (n = 60)Empirical (n = 32) 533

Unempirical (n = 28) 466

QualitativeQuantitativeMixed Methods (n = 32)

Qualitative (n = 11) 343Quantitative (n = 21) 656

Mixed (n = 0)

Type of Study (n = 32)EMPIRICAL

Cross sectional (n = 6) 187Focus groups (n = 2) 62

Interview (n = 9) 281Survey (n =6) 187

Retrospective Chart review (RCR) (n = 9) 281

Type of Study (cont)UNEMPIRICAL (n= 28)

Case study (n =10) 357Description of practice (n =8) 285

Literature review (n = 5) 178Systematic review (n=3) 107

Book chapter (n=2) 71

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

emspensp emsp | emsp7WITHAM eT Al

MacWilliamsetalrsquos(2014)casestudyapproachidentifiedsim‐ilar issues but focusedon the consequent difficultieswith com‐pliance intreatment Inparticular theydiscussedwhatthisthenmeantforpaincontrolandreducingtherisksofsuddencrisisanddeteriorationwheresomeoneishomelessKushelandMiaskowski(2006)identifiedtheusefulnessofldquopatientcontractsrdquoasameansof addressing such difficulties The remaining papers examininghomelessness included one systematic review paper from theUK(Hudson2016)Webb(2005)whoexaminedsevenUKhostelworkersrsquo experiences in relation to supporting homeless peopleattheirendoflifeandapaperbyPageetal(2012)whichlookedatcausesofdeathamonghomelesspeople inAlbertaThe find‐ingsfromthisstudyshowedthatmostdeathswereduetoldquonaturalcausesrdquothatisnotthetypesofdeathoftenassociatedwithdruguse such as overdoses and suicides Page et al (2012) also pro‐posed that thismeant that the circumstancesof death couldbeimprovedbymoreeffectivedeliveryofendoflifecaretohome‐lesspersons

35emsp|emspMental Health HIV and miscellaneous groups

MentalillhealthwashighlightedinmanyofthepapersidentifiedinthisreviewDepressionisknowntobeassociatedwithchronicandterminalillnessandwithpainbothasafactorincausationandarisingasaconsequenceof illness (HotopfChidgeyAddington‐HallampLanLy2002)This linkswiththepain literaturewhereanumber of authors suggested screening and referral to second‐ary mental health services as an appropriate response (Barclayetal2014Burton‐MacLeodetal2008KirshampPassik2006Koyyalaguntaetal2011Krashinetal2015)Mental illhealthwasidentifiedasaprimaryissueinareviewpaperbyMiovicandBlock(2007)lookingatpsychiatricdisordersandsubstanceldquomis‐userdquoinadvancedcancerAntonietal(2012)examinedsubstanceldquomisuserdquoexperiencedbyUSarmyveteransHalmanetal (2014)undertook a retrospective chart review (single institution) from83 late‐stage HIV patients from Canada highlighting substanceuse co‐morbidities of a subsetof peopledyingwithHIV‐relatedconditions Two papers from the USA Karus et al (2004) andMorganandKochan(2008)exploredHIVinrelationtosubstanceuse and end of life and found issues of underlying poverty anda lackofsufficienthealth insuranceHIVdiseasepersewasnotseenasanissueforendoflifecarebutratherHIVinaclusterof

mentalhealthproblemsalongsidesubstanceusethecombinationofwhichraisesthesortsof issuespreviouslyhighlightedaroundcomplianceandpaincontrolTherewere fourpapersaddressingwhatwehavetermedmarginalisedpopulationsincludingadiscus‐sionpaperproposingthattrainingwasneededtoincreasemeth‐adone counsellorsrsquo palliative and end of life care skills (Doukas2014) This was echoed by Mundt‐Leach (2016) who suggestscloser working relationships between palliative care and addic‐tionservicesDzul‐Churchetal (2010)andSulistioandJackson(2013)highlightcomplex issues related topovertymultiplesub‐stanceuseandemotionalandsocialdifficultiesInparticularpainmanagement strategies shouldbemoreeffectivewith increasedawarenessofthechallengesinprescribingforanalgesiacomparedwith opioid substitution therapy (Sulistio amp Jackson 2013) andhealthcareproviders shouldexamine thecomplexityofneeds inthese populations and provide structured person‐centred ap‐proachespredicatedoneffectivecommunication

36emsp|emspAlcohol

Thereweresixpapersidentifiedthathadalcoholasaprimaryfocus(Devetal2011Irwinetal2005Kwonetal2013bMercadanteetal2015Poonjaetal2014WebberampDavies2012)FiveofthepapersexaminedalcoholuseinrelationtocancerandonerelatedtolivercirrhosisMenformtheoverwhelmingmajorityofproblematicalcoholusersusuallybyafactorofmorethan21andthiscontin‐uesintothepalliativeadvancedcancerpopulationThisgenderbiaswasreflectedinthepopulationsoftheexistingevidenceonalcoholandendof lifecareHoweverproblematicalcoholuseappears tobemorecommoninyoungerpalliativepopulationsreferredlatetosupportive palliative care services (Kwonet al 2013b)Themostfrequently used alcohol screening instrument documented in theevidencetodateappearstobetheCAGEquestionnaire(Devetal2011Kwonetal20132015Mercadanteetal2015)althoughothersareusedinadditiontoor insteadofCAGEThepapersfo‐cussed on the importance of screening and concerns about ldquoun‐documentedrdquoalcoholdifficultiesandits impactonpeoplesendoflifeexperienceThisfocusonscreeningforalcoholproblemsamongthe end of life care populationmirrors the concerns identified inthepainliteraturearoundldquochemicalcopingrdquowherepeopleusesub‐stances to compensate for the inadequate pain relief prescribed(Kwonetal2015)

Study quality Symbol Type of study Number of all studies

High(14ndash18) uarr Primary Secondary

9 281

Moderate(10ndash13) rarr Primary Secondary

18 562

Low(6ndash9) darr Primary Secondary

5 156

Total 32 100

TA B L E 3 emspQualityratingsofempiricalliterature

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

8emsp |emsp emspensp WITHAM eT Al

TA B L E 4 emspFinalincludedpapers

FINAL PAPERS (n = 60) Quality indicator Country of Origin

AntoniCSilvermanMANasrSZMandiDampGoldenAG(2012)ProvidingsupportthroughlifesfinalchapterforthosewhomadeithomeMilitary Medicine177(12)1498ndash1501httpsdoiorg107205MILMED‐D‐12‐00315

Non‐empirical USA

ArthurJAHaiderAEdwardsTWaletich‐FlemmingJReddySBrueraEampHuiD(2016)AberrantopioiduseandurinedrugtestinginoutpatientpalliativecareJournal of Palliative Medicine19(7)778ndash782httpsdoiorg101089jpm20150335

Non‐empirical USA

BarclayJSOwensJEampBlackhallLJ(2014)Screeningforsubstanceabuseriskincancerpa‐tientsusingtheOpioidRiskToolandurinedrugscreenSupportive Care In Cancer22(7)1883ndash1888httpsdoiorg101007s00520‐014‐2167‐6

15 USA

BeynonCMcVeighJHurstAampMarrA(2010a)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431DOI101016jdrugpo201001012

9 UK

BeynonCStimsonGampLawsonE(2010b)IllegaldruguseintheageofageingBritish Journal of General Practice60(576)481ndash482DOI103399bjgp10X514710

Non‐empirical UK

BlackhallLJAlfsonEDampBarclayJS(2013)Screeningforsubstanceabuseanddiversioninvir‐giniahospices Journal of Palliative Medicine16(3)237ndash242httpsdoiorg101089jpm20120263

8 USA

Burton‐MacLeodSampFainsingerRL(2008)CancerpaincontrolinthesettingofsubstanceuseEstablishinggoalsofcareJournal of Palliative Care24(2)122ndash125

Non‐empirical Canada

CarmichaelANMorganLampDelFabbroE(2016)IdentifyingandassessingtheriskofopioidabuseinpatientswithcanceranintegrativereviewSubstance Abuse And Rehabilitation771ndash79httpsdoiorg102147SARS85409

Non‐empirical USA

ChildersJWampArnoldRM(2012)IfeeluncomfortablecallingapatientoutrdquoEducationalneedsofpalliativemedicinefellowsinmanagingopioidmisuseJournal of Pain and Symptom Management43(2)253ndash260DOI101016jjpainsymman201103009

12 USA

ChildersJWKingLAampArnoldRM(2015)ChronicpainandriskfactorsforopioidmisuseinapalliativecareclinicAmerican Journal of Hospice amp Palliative Medicine32(6)654ndash659httpsdoiorg1011771049909114531445

14 USA

ChouRFanciulloGJFinePGPassikSDampPortenoyRK(2009)Opioidsforchronicnoncan‐cerpainpredictionandidentificationofaberrantdrug‐relatedbehaviorsAreviewoftheevidenceforanAmericanPainSocietyandAmericanacademyofpainmedicineclinicalpracticeguidelineThe Journal of Pain10(2)131ndash146httpsdoiorg101016jjpain200810009

Non‐empirical USA

CollierR(2011)BringingpalliativecaretothehomelessCMAJCanadian Medical Association Journal183(6)E317‐E318httpsdoiorg101503cmaj109ndash3756

Non‐empirical Canada

CorkeryJ(2008)UKdrug‐relatedmortality‐‐issuesindefinitionandclassificationDrugs amp Alcohol Today8(2)17ndash25httpsdoiorg10110817459265200800014

Non‐empirical UK

DevRParsonsHAPallaSPalmerJLDelFabbroEampBrueraE(2011)UndocumentedalcoholismanditscorrelationwithtobaccoandillegaldruguseinadvancedcancerpatientsCancer117(19)4551ndash4556DOI101002cncr26082

11 USA

DoukasN(2014)AremethadonecounselorsproperlyequippedtomeetthepalliativecareneedsofolderadultsinmethadonemaintenancetreatmentImplicationsforTrainingJournal of Social Work in End‐ of‐ Life amp Palliative Care10(2)186ndash204httpsdoiorg101080155242562014906370

Non‐empirical Canada

Dzul‐ChurchVCiminoJWAdlerSRWongPampAndersonWG(2010)ImsittingherebymyselfexperiencesofpatientswithseriousillnessatanUrbanPublicHospitalJournal of Palliative Medicine13(6)695ndash701httpsdoiorg101089jpm20090352

15 USA

FarnhamC(2012)PalliativeCareforSubstanceMisusersInDOlivereBMonroeampSPayne(Eds)Death Dying and Social Differences(2ndEdition)(pp173ndash182)OxfordOxfordUniversityPresshttpsdoiorg101093acprofoso97801995992950010001

Non‐empirical UK

HalmanMCarusoneSCStranksSSchaefer‐McDanielNampStewartA(2013)Complexcareneedsofpatientswithlate‐stageHIVdiseaseAretrospectivestudyAIDS Care26(3)320ndash325httpsdoiorg101080095401212013819404

11 Canada

HudsonBF(2016)ChallengestoaccessandprovisionofpalliativecareforpeoplewhoarehomelessAsystematicreviewofqualitativeresearchBMC Palliative Care15(1)96httpsdoiorg101186s12904‐016‐0168ndash6

Non‐empirical UK

(Continues)

emspensp emsp | emsp9WITHAM eT Al

FINAL PAPERS (n = 60) Quality indicator Country of Origin

IrwinPMurraySBilinskiAChernBampStaffordB(2005)AlcoholwithdrawalasanunderratedcauseofagitateddeliriumandterminalrestlessnessinpatientswithadvancedmalignancyJournal of Pain amp Symptom Management29(1)104ndash108DOI101016jjpainsymman200404010

Non‐empirical Australia

KarusDRaveisVMarconiKHannaBSelwynPAlexanderCPerroneMampHigginsonI(2004)ServiceneedsofpatientswithadvancedHIVdiseaseacomparisonofclientandstaffreportsatthreepalliativecareprojectsAids Patient Care and STDs18(3)145ndash158httpsdoiorg101089108729104322994838

14 USA

KirshKampPassikS(2006)PalliativecareoftheterminallyilldrugaddictCancer Investigation24(4)425ndash431doiorg10108007357900600705565

Non‐empirical USA

KnowltonARNguyenTQRobinsonACHarrellPTampMitchellMM(2015)Painsymp‐tomsassociatedwithopioiduseamongvulnerablepersonswithHIVAnexploratorystudywithimplicationsforpalliativecareandopioidabusepreventionJournal of Palliative Care31(4)228ndash233httpsdoiorg101177082585971503100404

12 USA

KoyyalaguntaDBurtonAWToroMPDriverLNovyDM(2011)OpioidabuseincancerpainReportoftwocasesandpresentationofanalgorithmofmultidisciplinarycarePain Physician14(4)E361minus371

Non‐empirical USA

KrashinDMurinovaNampBallantyneJ(2012)ManagementofpainwithcomorbidsubstanceabuseCurrent Psychiatry Reports14(5)462ndash468httpsdoiorg101007s11920‐012‐0298‐3

Non‐empirical USA

KrashinDMurinovaNJumellePampBallantyneJ(2015)Opioidriskassessmentinpallia‐tivemedicineExpert Opinion on Drug Safety14(7)1023ndash1033httpsdoiorg1015171474033820151041915

Non‐empirical USA

KushelMBampMiaskowskiC(2006)End‐of‐lifecareforhomelesspatientsldquoshesayssheistheretohelpmeinanysituationrdquoJAMA296(24)2959ndash2966httpsdoiorg101001jama296242959

Non‐empirical USA

KutzenHS(2004)Integrationofpalliativecareintoprimarycareforhumanimmunodeficiencyvirus‐infectedpatientsAmerican Journal of the Medical Sciences328(1)37ndash47DOIhttpsdoiorg10109700000441‐200407000‐00006

Non‐empirical USA

KwonJHHuiDChisholmGampBrueraE(2013)Predictorsoflong‐termopioidtreatmentamongpatientswhoreceivechemoradiationforheadandneckcancerThe Oncologist18(6)768ndash774httpsdoiorg101634theoncologist2013‐0001

14 USA

KwonJHHuiDChisholmGHaCYennurajalingamSKangJHampBrueraE(2013)ClinicalcharacteristicsofcancerpatientsreferredearlytosupportiveandpalliativecareJournal of Palliative Medicine16(2)148ndash155httpsdoiorg101089jpm20120344

11 USA

KwonJHTancoKParkJCWongASeoLLiuDChisholmGWilliamsJHuiDampBrueraE(2015)FrequencypredictorsandmedicalrecorddocumentationofchemicalcopingamongadvancedcancerpatientsThe Oncologist20(6)692ndash697httpsdoiorg101634theoncologist2015‐0012

14 USA

MacWilliamsJBramwellMBrownSampOConnorM(2014)ReachingouttoRaydeliveringpal‐liativecareservicestoahomelesspersoninMelbourneAustraliaInternational Journal of Palliative Nursing20(2)83ndash88httpsdoiorg1012968ijpn201420283

6 Australia

McNeilRampGuirguis‐YoungerM(2012a)HarmreductionandpalliativecareIstherearoleforsuperviseddrugconsumptionservicesJournal of Palliative Care28(3)175ndash177

Non‐empirical Canada

McNeilRampGuirguis‐YoungerM(2012b)Illicitdruguseasachallengetothedeliveryofend‐of‐lifecareservicestohomelesspersonsPerceptionsofhealthandsocialservicesprofessionalsPalliative Medicine26(4)350ndash359httpsdoiorg1011770269216311402713

14 Canada

McNeilRGuirguis‐YoungerMampDilleyLB(2012)Recommendationsforimprovingtheend‐of‐lifecaresystemforhomelesspopulationsAqualitativestudyoftheviewsofCanadianhealthandsocialservicesprofessionalsBMC Palliative Care1114httpsdoiorg1011861472‐684X‐11‐14

15 Canada

McNeilRGuirguis‐YoungerMDilleyLBAubryTDTurnbullJampHwangSW(2012)Harmreductionservicesasapoint‐of‐entrytoandsourceofend‐of‐lifecareandsupportforhomelessandmarginallyhousedpersonswhousealcoholandorillicitdrugsaqualitativeanalysisBMC Public Health12(1)12312httpsdoiorg1011861471‐2458‐12‐312

14 Canada

McNeilRDilleyLBGuirguis‐YoungerMHwangSWampSmallW(2014)ImpactofsuperviseddrugconsumptionservicesonaccesstoandengagementwithcareatapalliativeandsupportivecarefacilityforpeoplelivingwithHIVAIDSAqualitativestudyJournal of the International AIDS Society 17 (1)18855httpsdoiorg107448IAS17118855

12 Canada

TA B L E 4 emsp (Continued)

(Continues)

10emsp |emsp emspensp WITHAM eT Al

FINAL PAPERS (n = 60) Quality indicator Country of Origin

MercadanteSPorzioGCaruselliAAielliFAdileCGirelliNCasuccioAampHomeCare‐ItalyG(2015)Thefrequencyofalcoholisminpatientswithadvancedcanceradmittedtoanacutepallia‐tivecareunitandahomecareprogramJournal of Pain amp Symptom Management49(2)254ndash257httpsdoiorg101016jjpainsymman201406005

12 Italy

MiovicMampBlockS(2007)PsychiatricdisordersinadvancedcancerCancer110(8)1665ndash1676httpsdoiorg101002cncr22980

Non‐empirical USA

MorganBampKochanKA(2008)IllAlwaysWantMoreComplexIssuesinHIVPalliativeCareJournal of Hospice amp Palliative Nursing10(5)265ndash271httpsdoiorg10109701NJH00003191764816544

Non‐empirical USA

Mundt‐LeachR(2016)EndoflifeandpalliativecareofpatientswithdrugandalcoholaddictionMental Health Practice20(3)17ndash21httpsdoiorg107748mhp2016e1148

Non‐empirical UK

PageSAThurstonWEampMahoneyCE(2012)CausesofDeathAmonganUrbanHomelessPopulationConsideredbytheMedicalExaminerJournal of Social Work in End‐ of‐ Life amp Palliative Care 8(3)265ndash271httpsdoiorg101080155242562012708111

11 Canada

PancariJampBairdC(2014)ManagingPrescriptionDrugDiversionRisksJournal of Addictions Nursing25(3)114ndash121httpsdoiorg101097JAN0000000000000036

Non‐empirical USA

PassikSDDhingraLKampKirshKL(2009)Cancerpainmanagementinthechemicallydepend‐entpatientInEDBrueraampRKPortenoy(Eds)Cancer Pain Assessment and Management(SecondEdition)(pp423ndash432)CambridgeCambridgeUniversityPresshttpsdoiorg101017CBO9780511642357

Non‐empirical USA

PerryBAWestfallAOMolonyETuckerRRitchieCSaagMSMugaveroMJampMerlinJS(2013)CharacteristicsofanambulatorypalliativecareclinicforHIV‐infectedpatientsJournal of Palliative Medicine16(8)934ndash937httpsdoiorg101089jpm20120451

12 USA

PodymowTTurnbullJampCoyleD(2006)Shelter‐basedpalliativecareforthehomelessterminallyill Palliative Medicine20(2)81ndash86httpsdoiorg1011910269216306pm1103oa

12 Canada

PoonjaZBriseboisAvanZantenSVTandonPMeebergGampKarvellasCJ(2014)PatientswithcirrhosisanddeniedlivertransplantsrarelyreceiveadequatepalliativecareorappropriatemanagementClinical Gastroenterology amp Hepatology12(4)692ndash698httpsdoiorg101016jcgh201308027

13 Canada

ReisfieldGMPaulianGDampWilsonGR(2009)FastFactsandConcepts127SubstanceusedisordersinthepalliativecarepatientJournal of Palliative Medicine12(5)475ndash476httpsdoiorg101089jpm20099630

Non‐empirical USA

RoeBBeynonCPickeringLampDuffyP(2010)ExperiencesofdruguseandageinghealthqualityofliferelationshipandserviceimplicationsJournal of Advanced Nursing66(9)1968ndash1979httpsdoiorg101111j1365ndash2648201005378x

12 UK

RowleyDMcLeanSOGormanARyanKampMcQuillanR(2011)Reviewofcancerpainmanage‐mentinpatientsreceivingmaintenanceMethadonetherapyAmerican Journal of Hospice and Palliative Medicine28(3)183ndash187httpsdoiorg1011771049909110380897

8 USA

SongJRatnerERBartelsDMAldertonLHudsonBampAhluwaliaJS(2007b)ExperienceswithandattitudestowarddeathanddyingamonghomelesspersonsJournal of General Internal Medicine22(4)427ndash434DOI101007s11606‐006‐0045‐8

13 USA

SongJBartelsDMampRatnerER(2007a)DyingonthestreetshomelesspersonsconcernsanddesiresaboutendoflifecareJournal of General Internal Medicine22(4)435ndash441httpsdoiorg101007s11606‐006‐0046‐7

12 USA

StenbackaMLeifmanAampRomelsjoA(2010)Mortalityandcauseofdeathamong1705il‐licitdrugusersA37yearfollowupDrug and Alcohol Review29(1)21ndash27httpsdoiorg101111j1465‐3362200900075x

12 Sweden

SulistioMampJacksonK(2013)ThreeweeksfromdiagnosistodeathThechaoticjourneyofalong‐termmethadonemaintenancepatientwithterminalcancerJournal of Pain and Symptom Management 46(4)598ndash602httpsdoiorg101016jjpainsymman201210231

Non‐empirical Australia

TanPDBarclayJSampBlackhallLJ(2015)DoPalliativeCareClinicsScreenforSubstanceAbuseandDiversionResultsofaNationalSurveyJournal of Palliative Medicine18(9)752ndash757httpsdoiorg101089jpm20150098

10 USA

TaverosMCampChuangEJ(2016)Painmanagementstrategiesforpatientsonmethadonemainte‐nancetherapyasystematicreviewoftheliteratureBMJ Supportive amp Palliative Care7(4)383ndash389DOI101136bmjspcare‐2016‐001126

Non‐empirical USA

TA B L E 4 emsp (Continued)

(Continues)

emspensp emsp | emsp11WITHAM eT Al

37emsp|emspMiscellaneous

Therewerefivepapersthatfelloutsideofthethematicgroupsidenti‐fiedBeynonMcVeighHurstandMarr(2010)examinedthechangingpatternsofcausesofdeathamongsubstanceusersintheNorthWestofEnglandTheyfoundthatthemedianageofdeathrosefrom3646in2003ndash2004to4138in2007ndash2008andthatcausesofdeathwerein‐creasinglyrelatedtochronicconditionsmoreassociatedwitholderageStenbackaetal(2010)reviewedchangesinsubstance‐relatedmortal‐itypatterns inSwedenand foundthat theaverageageofdeathwas47years25ndash30years less than thegeneralpopulationWomenhadlowermortalityratesandaccidentsandsuicideswerethemostcommoncausesofdeathinyoungersubstanceuserswithcardiovasculardiseaseand tumours most common among older substance users Corkery(2008)reviewedclassificationissuesindrugrelateddeaths(DRD)intheUKandfoundDRDsfallintotwobroadcategoriesthosedirectlyattrib‐utabletodruguse(overdosesandpoisoning)andindirectlyattributablethatisrelatedtodrugusesuchasinfectionsandaccidentsTheauthorsuggests thatmoreattention isgiventodirectDRDsrather thanthelong‐termconsequencesofdruguseTwopaperslookedatolderdrugusers inparticularRoeetal (2010)undertookqualitative interviews(n=11)witholderdrugsuserswhousedavoluntarydrugtreatmentserviceandfounddruguseimpactsnegativelyonhealthandfamilyre‐lationshipsandsupportManyolderuserslivedaloneandhadmultipleexperiencesoflossBeynonetal(2010b)reviewedUKpatternsofdrugusewithafocusonolderusersTheyfoundolderdruguserspresentedwithspecificchallengessuchasinteractionsbetweenlegalandillegaldrugs lackofsocialsupportcognitive impairmentand issuesaroundmanagingpainparticularlyattheirendoflife

4emsp |emspDISCUSSION

Thereisalackofdiversityqualitybreadthanddepthtothelitera‐tureonpalliativeandendof lifecare forpeoplewithproblematicsubstanceuseThegapsintheexistingevidencearemultiplebothintermsoffocusandmethodologyHoweverthisisnotsurprisinginanewlyrecognisedareaofpracticeandresearchWhatisevident

isthe lackofresearchonresponsestoand interventionsforpeo‐plewithproblematicsubstanceuseandpalliativeorendoflifecareneeds It appears policy and practice have yet to respond to theemergingneedsofpeoplewithproblematicsubstanceuseatorneartheirendoflifeinasignificantwayThisisaconcerngiventhetrendsaround substanceuse amongolder agegroups and the increasinglongevity of the general population This absence of practice re‐sponseisreflectedinthegapsintheevidencebaseandcanreflectalackofpatientinvolvementinordertodrivethroughrelevantandeffectivehealthimprovementsthatreflectthecomplexityandneedofthispopulation(LuxfordampSutton2014)

TheimplicationsfromthisREAwouldsuggestthatmoreempir‐icalresearchneedstobeconductedexploringallaspectsofprob‐lematicsubstanceuseandpalliativeandendoflifecareThereisalackofdatafromcountriesoutsideofNorthAmericaComparativestudieswouldbeparticularlybeneficialtoourunderstandingoftheissues aswouldhealth and social care responseswithin differentculturalcontextsTheremaybedifferenthealthcareprofessionalre‐sponsesinrelationtopalliativeandendoflifecarewithinEastAsiancountries(Moritaetal2015)forexampleorevenculturallydiversecommunitieswithinwesterncountries(OwenampRandhawa2004)

TherewerefewprevalencestudiesidentifiedThisisanareare‐quiringmoreepidemiologicalresearchtoprovideawidercontextforpolicyandpracticedevelopmentIntermsofmethodologicalinquirymorequantitativeapproachesareneededtoprovidelargerscaledataontheexperiencesofparticularpopulationsinvolvedinservicepro‐visionegpalliativecaresocialworkerscommunitynurseprovision

Furtherresearchisneededonconditionsotherthancancerthatco‐existwithsubstanceusebothintermsoftheirprevalenceandincidence and also the health and social care responses availableto peoplewith experience of both substance use and life limitingillness There are a wide range of co‐morbidities associated withsubstance use including COPD diabetes cardiovascular diseasementalhealthproblemsandliverdisease(CullenOrsquoBrienOrsquoCarrollOrsquoKellyampBury2009Shieldetal2014)

Therewasnoresearch identifyingmodelsofgoodpracticeforworkingwithco‐existingsubstanceuseandpalliativeorendoflifeconditions theyneeddevelopingpilotingandevaluating for their

FINAL PAPERS (n = 60) Quality indicator Country of Origin

WalshAFampBroglioK(2010)PainManagementinAdvancedIllnessandComorbidSubstanceUseDisorderJournal of Hospice and Palliative Care Nursing12(1)8ndash14httpsdoiorg101097NJH0b013e3181c72e19

Non‐empirical USA

WebbWA(2015)WhendyingathomeisnotanoptionExplorationofhostelstaffviewsonpallia‐tivecareforhomelesspeopleInternational Journal of Palliative Nursing21(5)236ndash244httpsdoiorg1012968ijpn2015215236

9 UK

WebberKampDaviesAN(2012)Anobservationalstudytodeterminetheprevalenceofalco‐holusedisordersinadvancedcancerpatientsPalliative Medicine26(4)360ndash367httpsdoiorg1011770269216311409474

12 UK

WilliamsBAAhaltCStijacic‐CenzerISmithAKGoldensonJampRitchieCS(2014)PainbehindbarstheepidemiologyofpaininolderjailinmatesinacountyjailJournal of Palliative Medicine17(12)1336ndash1343httpsdoiorg101089jpm20140160

12 USA

TA B L E 4 emsp (Continued)

12emsp |emsp emspensp WITHAM eT Al

effectivenessAldridgeetal(2017)andLuchenskietal(2018)high‐light the issues related to marginalised and excluded populationsandrecommends interventiondevelopmenttargetingmodificationofsocialdeterminantsofhealthlikehousingandtrainingTheyalsorecommendexaminingmodelsofcareaprimarysecondaryandpre‐ventativelevelstoassessneedatapopulationlevel

Qualitativeinquiryisrequiredtoestablishtheneedsoffamilyandfriendsofpeoplewithsubstanceuseproblemsatornear theirendoflifeSuchqualitativeinquiryshouldextendtopatientsrsquovoicesthatarecurrentlyunder‐researchedandalmostabsent from theexistingevidenceMoredensedescriptionisrequiredincludingsocialdemo‐graphicandhealthprofilesofparticipantsaswellassettingandcontexttoenhancetransferability(RolfeRamsdenBannerampGraham2018)Aclearrepresentationofpeoplewithproblematicsubstanceusecangivediverseperspectivestodesignrelevantandappropriatestudiesandenhancesustainability(Wilsonetal2015)ResearchshouldalsoincludetheexperiencesviewsandattitudesofsocialandhealthcareprofessionalsinrespondingtotheoverlappingissuesofsubstanceuseandpalliativeandendoflifeconditionsThiscouldincludeconcernsaboutpotentialsafetyrisksforoutreachorcommunity‐basedpracticeinparticularashighlightedbyGalvaniDanceandWright (2018) intheirstudyofhospiceandspecialistsubstanceusestaffLastlytherewaslimitedevidencefoundinrelationtoalcohol(forexampleprob‐lematicalcoholconsumptionassociatedwithlivercirrhosisspecificallyattheendof life)FurtherworkneedstobedoneinthisareagivenalcoholremainsthemostcommonlyusedsubstanceThefullREAre‐portforthisworkcanbeaccessedforfurther information (WithamGalvaniampPeacock2018)

41emsp|emspLimitations

REAs have a number of limitations including the breadth anddepthof thesearchingThenumberandtypeofdatabasesusedfor searching are often limited to allow for a more rapid resultandusuallydonotincludethecomprehensivesearchinginvolvedin systematic reviews (undated)These limitationsapply to thisstudy too The decision to set the cut‐off date at 2004 and toaccess only English language literaturemeant that some studiesmayhavebeenmissedand it isnotpossible toknowhowmanywouldhavemetourinclusioncriteriaNeverthelessagreeingandadheringtoadatelimiterisanacceptedfeatureofREArsquosasistheneedtosetlimitsontheretrievaloffulltexts(GovernmentSocialResearchampEPPICentres2009)Thirteendatabasesacrosshealthand social care sourceswere accessed for this review It is pos‐siblethatmoredatabasesmayhaveproducedadditionalmaterialSimilarly expanding our search terms to include specific healthconditions and specific types of licit and illicit drugs may haveproduced furtherhitsDataextraction and critique isoften lim‐itedwithREAsresultinginafocusonmethodologyandonlykeyelements of dataWhile this reviewwent slighter deeper in ourreadingandgroupingofcontentwithintheevidencealessrapidreviewcouldhaveincludedthisgreaterdepth

5emsp |emspCONCLUSION

ThisREAsetouttoexplorecurrentresponsestoandmodelsofprac‐ticeforpeoplelivingwithproblematicsubstanceuseandpalliativeandendoflifecareconditionsThereisadearthofresearchavailableonthis topicand thus the focusof this reviewwasbroadened to iden‐tifywhatevidencewasavailableitsfocusqualityandthegapsintheresearchevidencebaseTheresultingbodyofworkcomprised60pa‐persprimarilyfrompeer‐reviewedjournals Itwasquitedisparate infocuswithadiverserangeofresearchpopulationsresearchquestionsandmethodological choicesThe available evidence resulted in twoclearbutlimitedgroupsofpapersthosefocussingonpainmanage‐mentandprescribingandthosefocussingonhomelessnesssubstanceuseandendoflifecareAthirdgroupincludedasmallbodyofworkonalcoholandpalliativeorendoflifecareandasmallnumberofotherpapersincludingco‐existingmentalhealthorHIV‐relatedconditionsThisisclearlyanareaofworkwherefarmoreresearchisneededItisanewareaofworkandresearchfocusandthathastobeconsideredinconsideringourfindingsHoweverthegapsidentifiedareconsiderableandneedtobefilledinordertoprovideanevidencebaseonwhichtobuildfuturegoodpolicyandpracticebothintheUKandinternation‐allyUltimatelythisworkisneededtoensurethatthisgrowinggroupofpeoplehavegoodqualitycareandequalaccesstoserviceprovision

ORCID

Gary Witham httpsorcidorg0000‐0002‐8575‐7533

R E FE R E N C E S

Aldridge RW Story A Hwang SWNordentoftM Luchenski SA Hartwell G hellip Hayward A C (2017) Morbidity and moral‐ity inhomeless individuals prisioners sexworkers and individualswith substance use disorders in high‐income countries A system‐atic review and meta‐analysis Lancet 391 241ndash250 httpsdoiorg101016S0140‐6736(17)31869‐X

Barnett‐PageEampThomasJ(2009)Methodsforthesynthesisofquali‐tativeresearchAcriticalreviewBMC Medical Research Methodology959httpsdoiorg1011861471‐2288‐9‐59

Bell RampMarmotM (2017) Life course approach to understandinginequalitiesinhealthinlaterlifeInMJean‐PierreLBBeattieFCMartinampJDWalston(Eds)Oxford textbook of geriatric medicine (3rded)(pp69ndash76)OxfordOxfordUniversityPress

Benyon C M Roe B Duffy P amp Pickering L (2009) Self‐re‐ported health status and health service contact of illicit drugusers aged 50 and over A qualitative Interview study inMersyside United Kingdom BMC Geriatrics 9 45 httpsdoiorg1011861471‐2318‐9‐45

BeynonCMcVeighJHurstAampMarrA(2010)OlderandsickerChangingmortalityofdrugusersintreatmentintheNorthWestofEnglandInternational Journal of Drug Policy21(5)429ndash431httpsdoiorg101016jdrugpo201001012

Centre for Evidence‐based Management (undated) lsquoWhat is a RapidEvidenceAssessment(REA)rsquoRetrievedMay212019fromhttpswwwcebmaorgfaqwhat‐is‐an‐rea

Chang E W Kreis A J Wong T Y Simpson J A ampGuymer R H (2008) Alcohol consumption and the risk of

emspensp emsp | emsp13WITHAM eT Al

age‐relatedmacular degeneration A systematic review andmeta‐analysis American Journal of Ophthalmology145707ndash715httpsdoiorg101016jajo200712005

ClaptonJRutterDampSharifN(2009)SCIE Systematic mapping guid‐anceLondonSCIE

ClausenTAnchersenKampWaalH(2008)Mortalitypriortoduringandafteropioidmaintenancetreatment(OMT)Anationalprospec‐tivecross‐registrystudyDrug and Alcohol Dependence94151ndash157httpsdoiorg101016jdrugalcdep200711003

Clausen T Waal H Thoresen M amp Gossop M (2009) Mortalityamong opiate users Opioid maintenance therapy age andcause of death Addiction 104(8) 1356ndash1362 httpsdoiorg101111j1360‐0443200902570x

CullenWOrsquoBrien SOrsquoCarroll AOrsquoKelly FDampBuryG (2009)Chronicillnessandco‐morbidityamongproblemdrugusersAcom‐parative cross sectional pilot study in primary care BMC Family Practice1025httpsdoiorg1011861471‐2296‐10‐25

Department for International Development (2014) Assessing the strength of evidence Retrieved from httpsassetspublishingservicegovukgovernmentuploadssystemuploadsattachment_datafile291982HTNstrengh‐evidence‐march2014pdf

Department for InternationalDevelopment (2017)Rapid evidence as‐sessmentsRetrievedNovember202017fromhttpswwwgovukgovernmentcollectionsrapid‐evidence‐assessments

DepartmentofHealth(2004)Building on the best End of life care initia‐tiveLondonDH

Erskine S Maheswaran R Pearson T amp Gleeson D (2010)Socioeconomicdeprivationurban‐rurallocationandalcohol‐relatedmortality inEnglandandWalesBMC Public Health1099httpsdoiorg1011861471‐2458‐10‐99

EtkindSNBoneAEGomesBLovellNEvansJHigginsonIJampMurtaghFEM(2017)HowmanypeoplewillneedPalliativecarein2040PasttrendsfutureprojectionsandimplicationsforservicesBMC Medicine15102httpsdoiorg101186s12916‐017‐0860‐2

GalvaniSDanceCampWrightS(2018)End of life care for people with alcohol and other drug problems Professionalsrsquo Perspectives Final ReportManchesterManchesterMetropolitanUniversityRetrievedMay212019fromwwwendoflifecaresubstanceusecom

GalvaniSampForresterD(2011)Social work services and recovery from substance misuse A review of the evidence Edinburgh ScotlandScottishGovernmentSocialResearch

GalvaniSLivingstonWampMorganH(2016)TherelationshipbetweensightlossandsubstanceuseUsersrsquoperspectivesDrugs Education Prevention amp Policy23(6)476ndash483httpsdoiorg1031090968763720161161009

Galvani S Tetley J Haigh C Webb L Yarwood G Ashby J hellipDuncanF(2016)Endoflifecareforpeoplewithalcoholandotherdrug problems An exploratory study BMJ Supportive amp Palliative Carehttpsdoiorg101136bmjspcare‐2016‐00120423

GeneralMedicalCouncil (2010)Treatment and care towards the end of life Good practice in decision makingRetrievedMay2019fromhttpswwwgmc‐ukorg‐mediadocumentstreatment‐and‐care‐towards‐the‐end‐of‐lifendash‐english‐1015_pdf‐48902105pdf

GibsonADegenhardtLMartickRPAliRWhite JampOrsquoBrienS (2008) Exposure to opioid maintenance treatment re‐duces long‐term mortality Addition 103 462ndash468 httpsdoiorg101111j1360‐0443200702090x

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GSR(2013)RapidevidenceassessmenttoolkitCivil ServiceRetrievedMay 05 2017 from httpwebarchivenationalarchivesgovuk20140305122816httpwwwcivilservicegovuknetworksgsrresources‐and‐guidancerapid‐evidence‐assessment

HenshallDE InnesCWDMorrison SRWilsonBBrownRAMcAllisterSMhellipRedaE(2018)Aprospectiveobservationalstudyofemergencydepartmentpresentationsfollowingnovelpsy‐choactivesubstancesScottish Medical Journal63(2)39ndash44

HotopfMChidgeyJAddington‐HallJampLanLyK(2002)DepressioninadvanceddiseaseAsystematicreviewPart1PrevalenceandcasefindingPalliative Medicine1681ndash97httpsdoiorg10119102169216302pm507oa

Kaplan M S Huguet N Feeny D McFarland B H Caetano RBernierJhellipRossN(2012)AlcoholusepatternsandtrajectoriesofHealth‐RelatedqualityoflifeinMiddle‐agedandolderadultsA14yearpopulation‐basedstudyJournal of Studies on Alcohol and Drugs73(4)581ndash590httpsdoiorg1015288jsad201273581

Liakoni E Dolder P C Rentsch K M amp Liechti M E (2016)Presentations due to acute toxicity of psychoactive sub‐stances in an urban emergency department in Switzerland Acase series BMC Pharmacology amp Toxicology 17 25 httpsdoiorg101186540360‐016‐0068‐7

LucasPJBairdJAraiLLawCampRobertsHM(2007)Workedexamplesofalternativemethodsforthesynthesisofqualitativeandquantitative research in systematic reviewsBMC Medical Research Methodology74httpsdoiorg1011861471‐2288‐7‐4

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LuxfordKampSuttonS(2014)ldquoHowdoespatientexperiencefitintotheoverallhealthcarepracticePatient Experience Journal1(1)20ndash27

McKeganeyN (2006)TheLureandthe lossofharmreduction inUKdrugpolicyandpracticeAddiction Research amp Theory14(6)557ndash588httpsdoiorg10108016066350601002369

Morita TOyamaY Cheng S‐Y Suh S‐Y Koh S J KimH ShellipTsuneto S (2015) Palliative care Physicianrsquos attitudes toward pa‐tient autonomy and a gooddeath in EastAsianCountries Journal of Pain and Symptom Management 50(2) 190ndash199e1 httpsdoiorg101016jjpainsymman201502020

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Owens A amp Randhawa G (2004) Itrsquos different from my culturetheyrsquore very different Providing community‐based lsquocultur‐ally competentrsquo palliative care for South Asian people in the UKHealth amp Social Care in the Community12(5) 414ndash421 httpsdoiorg101111j1365‐2524200400511x

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14emsp |emsp emspensp WITHAM eT Al

Dependence 110(1ndash2) 108ndash116 httpsdoiorg101016jdrugalcdep201002011

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WithamGGalvaniSampPeacockM(2018)Evidence assessment End of life care for people with alcohol and drug problemsRetrievedfromhttpsendoflifecaresubstanceusefileswordpresscom201811end‐of‐life‐care‐for‐people‐with‐substance‐use‐rea‐full‐report‐31‐july‐2018pdf

How to cite this articleWithamGGalvaniSPeacockMEndoflifecareforpeoplewithalcoholanddrugproblemsFindingsfromaRapidEvidenceAssessmentHealth Soc Care Community 2019001ndash14 httpsdoiorg101111hsc12807