End-of-Life Care Pathways in Acute and Hospice Care: An Integrative Review

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Review Article End-of-Life Care Pathways in Acute and Hospice Care: An Integrative Review Jane L. Phillips, RN, BA Sc (Nur), PhD, Elizabeth J. Halcomb, RN, BSc, CCU Cert, GradDipEd, MA (Ed&Work), PhD, and Patricia M. Davidson, RN, BA, MEd, PhD The Cunningham Centre for Palliative Care and The University of Notre Dame (J.L.P.), Darlinghurst, School of Nursing (E.J.H.), University of Western Sydney, Penrith; and Centre for Cardiovascular and Chronic Care (P.M.D.), School of Nursing and Midwifery, Curtin University of Technology, Chippendale, New South Wales, Australia Abstract Context. Over the past decade, there has been widespread adoption of end-of- life care pathways as a tool to better manage care of the dying in a variety of care settings. The adoption of various end-of-life care pathways has occurred despite lack of robust evidence for their use. Objectives. This integrative review identified published studies evaluating the impact of an end-of-life care pathway in the acute and hospice care setting from January 1996 to April 2010. Methods. A search of the electronic databases Scopus and Cumulative Index of Nursing and Allied Health Literature as well as Medline and the World Wide Web were undertaken. This search used Medical Subject Headings key words including ‘‘end-of-life care,’’ ‘‘dying,’’ ‘‘palliative care,’’ ‘‘pathways,’’ ‘‘acute care,’’ and ‘‘evaluation.’’ Articles were reviewed by two authors using a critical appraisal tool. Results. The search revealed 638 articles. Of these, 26 articles met the inclusion criteria for this integrative review. No randomized controlled trials were reported. The majority of these articles reported baseline and post implementation pathway chart audit data, whereas a smaller number were local, national, or international benchmarking studies. Most of the studies emerged from the United Kingdom, with a smaller number from the United States, The Netherlands, and Australia. Conclusion. Existing data demonstrate the utility of the end-of-life pathway in improving care of the dying. The absence of randomized controlled trial data, however, precludes definitive recommendations and underscores the importance of ongoing research. J Pain Symptom Manage 2011;41:940e955. Ó 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words End-of-life care pathway, dying, acute care, hospice, terminal care, palliative care Address correspondence to: Jane L. Phillips, RN, BA Sci (Nur), PhD, Department of Nursing, The University of Notre Dame, Australia and The Cunningham Centre for Palliative Care, 160 Oxford Street, Darlinghurst, New South Wales 2010, Australia. E-mail: [email protected] Accepted for publication: July 29, 2010. Ó 2011 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. 0885-3924/$ - see front matter doi:10.1016/j.jpainsymman.2010.07.020 940 Journal of Pain and Symptom Management Vol. 41 No. 5 May 2011

Transcript of End-of-Life Care Pathways in Acute and Hospice Care: An Integrative Review

940 Journal of Pain and Symptom Management Vol. 41 No. 5 May 2011

Review Article

End-of-Life Care Pathways in Acuteand Hospice Care: An Integrative ReviewJane L. Phillips, RN, BA Sc (Nur), PhD, Elizabeth J. Halcomb, RN, BSc, CCU Cert,GradDipEd, MA (Ed&Work), PhD, and Patricia M. Davidson, RN, BA, MEd, PhDThe Cunningham Centre for Palliative Care and The University of Notre Dame (J.L.P.), Darlinghurst,

School of Nursing (E.J.H.), University of Western Sydney, Penrith; and Centre for Cardiovascular and

Chronic Care (P.M.D.), School of Nursing and Midwifery, Curtin University of Technology,

Chippendale, New South Wales, Australia

Abstract

Context. Over the past decade, there has been widespread adoption of end-of-

life care pathways as a tool to better manage care of the dying in a variety of caresettings. The adoption of various end-of-life care pathways has occurred despitelack of robust evidence for their use.

Objectives. This integrative review identified published studies evaluating theimpact of an end-of-life care pathway in the acute and hospice care setting fromJanuary 1996 to April 2010.

Methods. A search of the electronic databases Scopus and Cumulative Index ofNursing and Allied Health Literature as well as Medline and the World Wide Webwere undertaken. This search used Medical Subject Headings key words including‘‘end-of-life care,’’ ‘‘dying,’’ ‘‘palliative care,’’ ‘‘pathways,’’ ‘‘acute care,’’ and‘‘evaluation.’’ Articles were reviewed by two authors using a critical appraisal tool.

Results. The search revealed 638 articles. Of these, 26 articles met the inclusioncriteria for this integrative review. No randomized controlled trials were reported.The majority of these articles reported baseline and post implementation pathwaychart audit data, whereas a smaller number were local, national, or internationalbenchmarking studies. Most of the studies emerged from the United Kingdom,with a smaller number from the United States, The Netherlands, and Australia.

Conclusion. Existing data demonstrate the utility of the end-of-life pathway inimproving care of the dying. The absence of randomized controlled trial data,however, precludes definitive recommendations and underscores the importanceof ongoing research. J Pain Symptom Manage 2011;41:940e955. � 2011 U.S.Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key Words

End-of-life care pathway, dying, acute care, hospice, terminal care, palliative care

Address correspondence to: Jane L. Phillips, RN, BA Sci(Nur), PhD, Department of Nursing, The Universityof Notre Dame, Australia and The CunninghamCentre for Palliative Care, 160 Oxford Street,

Darlinghurst, New South Wales 2010, Australia.E-mail: [email protected]

Accepted for publication: July 29, 2010.

� 2011 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2010.07.020

Vol. 41 No. 5 May 2011 941Integrative Review of End-of-Life Care Pathways

IntroductionThe setting andmanner inwhich people die is

of interest toclinicians andpolicymakers as awaynot only ofmeeting consumer choice, in relationto dying with dignity, but also of reducing costsand avoiding unnecessary and clinically futileinterventions. Most deaths in the developedworld now occur in the acute care setting,1,2

and this is expected to increase as thepopulationages and more people die of chronic and com-plex conditions.3 Yet, few of these acute caredeaths will be managed by specialist palliativecare providers, with most being handled byhealth professionals with no formal training indiagnosing dying and for whom end-of-life careis not their primary area of expertise.4

In the acute care environment, where thefocus has traditionally been on ‘‘curing and pro-longing life,’’ there can be tensions and chal-lenges in moving care toward a symptommanagement model, such as palliative care.4

Supporting patients and families to make thistransition in a curative culture can seem con-fronting tomany acute carehealth professionalsand, in part, may explain late recognition ofdying and a delay in initiating end-of-life carein hospitals. Unfortunately, late recognition ofdying is likely to result inpoor symptommanage-ment and suboptimal psychosocial and spiritualcare fordyingpatients and their families.5,6Con-sumer concernsover inadequate end-of-life carehave been identified in various internationalhealth service reform agendas7 and currentlyaccounts for more than half of all complaintsreceived by the National Health Service.5

The seminalworkofEllershawandcolleaguesin developing integrated end-of-life care path-ways emerged in response to the shortcomingsof the health care system’s capacity to deliverevidence-based end-of-life care in the late1990s.8e10 Integrated care pathways detail theessential elements of care required to managea specific clinical problem and ensure that thebest available evidence is systematically inte-grated into care delivery while providinga framework for auditing and benchmarkingcare.11 The Liverpool Care Pathway (LCP) wasdesigned to improve care of cancer patientsin the last 48 hours of life and facilitatemonitor-ing of the level and type of end-of-life care pro-vided.10 A multidisciplinary team philosophyunderpins the approach of this end-of-life care

pathway, which is divided into three sections:initial assessment, ongoing care, and care afterdeath, with 18 goals of care identified.12 Thetemplate provides an aid to decision making,with the pathway replacing all other documen-tation.10 Over the past decade, the LCP has un-dergonemany revisions and is nowused inmorethan 1000 care organizations in the UnitedKingdom.8,13 The LCP is a key element of theGold Standards Framework promoted by theNational Institutes of Clinical Excellences inthe United Kingdom to facilitate the deliveryof palliative care beyond specialist care set-tings.14 More recently, the pathway has beenadapted for use in other population groups,such as people dying with advanced chronic kid-ney disease15 or from stroke and those dying inthe emergency setting; these adaptations havebeen accomplished in parallel with translationof the LCP into other languages.16,17

The widespread diffusion of the end-of-lifepathway has resulted in the development andimplementation of end-of-life care pathways inthe United States,18e20 Europe,21 Australia,22

and China.23 These pathways are now usedin hospices, acute care, community, and resi-dential aged care sectors.8,24 Despite theend-of-life care pathways’ widespread adop-tion, recent public comments have calledinto question the promotion and adoption ofthese clinical tools because of fears that thesepathways fail to be sensitive enough to accu-rately diagnose dying or meet the individualneeds of dying people; there is concern thatthey may actually hasten death, particularly ifall reversible causes for decline are not system-atically investigated.25,26

A recent Cochrane review found 920 poten-tially relevant articles but no studies that metthe inclusion criteria of a randomized con-trolled trial, confirming widespread uptake ofthe pathway in the absence of supporting evi-dence.27 This review concluded that therewas no evidence of harm that would preventthe use of the end-of-life pathway to managethe care of people actively dying.27 In an eraof evidence-based medicine, parallels can bedrawn between the rapid uptake of the end-of-life care pathway and laparoscopic choles-tectomy,28 with both practices being adoptedin a vacuum of evidence from randomizedcontrolled trials.

942 Vol. 41 No. 5 May 2011Phillips et al.

Given the global adoption of the end-of-lifecare pathway, emerging concerns over its use,and a lack of randomized controlled trials,27

there is a need for further appraisal of theend-of-life care pathway.25

The purpose of this integrative review was toidentify published studies describing the useof the end-of-life care pathway to determine its1) impact on consumers (patients and families),health professionals, and the acute care and/orhospice systems and 2) barriers and facilitatorsto its implementation. The integrative reviewaimed to address the following questions:1) In which population(s) has the end-of-lifecare pathway predominately been used to man-age care of the dying? 2) Is there evidence tosupport the end-of-life care pathway’s use inacute care and/or hospice systems? 3) Whatare the implications of these findings forevidence-based care of the dying in the acutecare and/or hospice setting? 4) What are thekey elements underpinning effective imple-mentation of the end-of-life care pathway? and5) What are the gaps in the evidence and futureresearch directions?

MethodsDefinitions

An integrative review, using prespecifiedparameters, allows systematic appraisal of the lit-erature and synthesizing of researchfindings ona focused topic. This method allows for theinclusion of varied research designs and meth-odological approaches to provide a comprehen-sive analysis of a topic and draw overallconclusions from primary studies.29 An integra-tive review includes problem identification, a lit-erature search, data evaluation, data analysis,andpresentation.29 This structured and focusedapproach to conducting a literature review is ap-propriate in subject areas where a summation ofeffect and identifying issues of implementationarebeneficial. Similarapproaches toasystematicreview are incorporated in this technique toensure rigor through a standardized review pro-tocol to enable replication.30

Setting and SampleBoth randomized and nonrandomized stud-

ies were eligible for inclusion in this review.Articles were selected if an end-of-life care

pathway was used to manage the dying phasein the acute care and/or hospice setting andif care delivered to dying patients and/or theirfamilies was evaluated. Articles were excludedif they reported a single case study or de-scribed process measures only.This integrative review was conducted over

the period from November 1, 2009 to the finalweek of April 2010. The initial literature searchwas undertaken in Cumulative Index of Nurs-ing and Allied Health Literature, Medline, Em-base, PsycINFO, Scopus, and the World WideWeb, using Google Scholar and Mednar searchengines, and was limited to articles publishedsince 1996 in the English language, relatedto adult patients. The Medical Subject Head-ings (MeSH) terms were identified, with fourkey concepts explored: acute care, palliativecare, end-of-life care, and pathways. MeSH keywords including palliative care, terminal care,end-of-life care, dying, acute care, pathways, inte-grated care pathway, end-of-life care pathway, evalu-ation, and health services research were used inthe search. Reference lists were checked foradditional sources; hand searching of relevantjournals also was undertaken.The search strategy generated 638 articles.

No randomized controlled trials or meta-analyses were identified. Five hundred sixtyarticles were excluded based on the inclusioncriteria, leaving 78 potential studies to be in-cluded in the review. After reviewing the fullarticle, 52 of these articles were rejectedbecause they did not provide empirical dataabout the impact of the end-of-life care path-way for adults dying in the acute care or hos-pice setting. Articles that were rejectedtended to describe single case studies, or thedevelopment or implementation process, with-out reporting outcomes. Three studies did notmeet the inclusion criteria because these werenot available in English, and a further fourarticles were rejected because they were edito-rials. At the end of this process, 26 studiesmatched the inclusion criteria.

Data AnalysisAppraising the quality of a study for inclusion

in an integrative review is a complex undertak-ing.29 To assist with this quality assessment pro-cess, two evidence evaluation tools developedby the Australian Palliative Residential AgedCare (APRAC) Project Guidelines were used to

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appraise the studies.31 The APRAC quantitativestudies evaluation tool adopted the AustralianNationalHealth andMedicalResearchCouncilslevel of evidence categories.32 This tool wasmodified to include verifiable quality or pro-gram evaluation data (Level V evidence).33

This data extraction tool facilitated a systematicapproach to appraising the strength of the evi-dence, and the quality of methods used, whiledetermining the transferability of the results tomake a recommendation about the pathway’sapplicability.34 The APRAC qualitative studieslevel of evidence (Level QE) evaluation tooluses eight questions to appraise the aim of thestudy and appropriateness of the method.31

For each included study, data onmethods, set-ting, population, findings, evidence levels, im-plementation features, and strengths andweaknesses of the approach were extractedonto the data collection tool and into a matrixby J. L. P. and P. M. D. In the event of disagree-ment, a third reviewer (E. J. H.) provided clarifi-cation. This process facilitated the summary ofkey points and synthesizing of information to in-formorganizationaldecisionmakingaround theimplementation of an end-of-life care pathway.After completion of the matrix, it became clearthat the heterogeneity of studies precluded for-mal meta-analysis. Therefore, thematic contentanalysis was undertaken to identify key issues.

ResultsTable 1 summarizes the 26 studies included

in this integrative review and data elementsincluded in the data analysis process. Thedefining features of each study are summa-rized in Table 2. In accordance with the hierar-chy of evidence,32 most studies (n¼ 11) werecase series reporting pre- and post-test out-comes (Level IV), with the highest level ofevidence (Level III-3) coming from a smallnumber (n¼ 2) of comparative studies withoutconcurrent controls. Despite this limitation,the studies included in this review provideduseful insights into the level of end-of-lifecare delivered and information relating tothe pathway implementation process.

Populations and SettingsFifteen studies were conducted in the

United Kingdom, four in The Netherlands,

three in the United States, two in Australia,and one each in Ireland and China. Althoughend-of-life care pathways were originally in-tended for cancer populations, only four stud-ies focused exclusively on people dying withcancer. Three studies examined the impact ofthe pathway on care for people dying fromother causes, such as stroke, renal failure, post-cardiac arrest, or an intracranial hemorrhage.Eleven studies reported on pathway data re-lated to the care of people dying in a rangeof acute care settings, and seven studies wereundertaken in a palliative care or hospice envi-ronment. Four studies outlined pathway mod-ifications, including tailoring end-of-life carefor specific populations,35,36 increasing theobservation period to manage workforce is-sues,16 expanding the time period that deathwas predicted to occur within seven days,18

and maintaining active treatment.18

Qualitative StudiesFour qualitative studies focusing on end-of-

life care pathway domains reported findingsfrom focus group37 and semistructured inter-views.38,39 These studies all tended to be un-dertaken early in the pathways evolution. Thekey themes emerging from these qualitativestudies revealed a perception that the end-of-life care pathway had impacted positively oncare of the dying through better coordinationof care, enhanced communication, andgreater adherence to evidence-based clinicalguidelines (Level QE).37,39

Health Professional and/or Carer PerceptionsSix studies reported health professional6,36,40

or carer survey data6,40e42 on various aspects ofend-of-life care pathway usage. There was someevidence (Level IV) that theuse of an end-of-lifecare pathway contributed to lower levels ofbereavement in relatives42 and lower levels ofperceived patient symptom burden in the lastdays of life.40

Pre- and/or Post-Pathway AuditsNearly all studies identified in this end-of-

life care pathway integrated review were non-experimental studies that reported baselineand post-pathway implementation chartaudits.6,18e20,22,35,40,43e45 Few of these pre- andpost-test chart audit studies included a controlgroup19,20 or collected contemporaneous

Table 1Summary of Included Studies

Source Country Focus Design Participants OutcomesLevel ofEvidence Features

van der Heideet al. 20106

TheNetherlands

Use of LCP formanagement ofcancer deaths inacute, aged, anda home caresetting.

Mixed method.Survey andretrospectivebaseline andprospectivepost-LCP chartaudit. No control.

Survey: Physicians andfamilies of 311deceased cancerpatients:

Chart audit (n¼ 231)prospective post-testrecruitment.

Pathway usage hadno significant impacton the types of drugsused in the last 72hours of life andreduced the useof drugs witha potentiallylife-shorteningeffect from 46%to 28%.

IV Physician surveyCarer surveyChart auditProspectiverecruitment

Jackson et al.200922

Australia Use of modifiedLCP in fourgeneral medicalwards.

Retrospectivebaseline (limiteddata) and post-LCP chart audit.No control.

Baseline audit (n¼ 15)and post-pathwayaudit (n¼ 20).

Descriptive statisticsonly. Limitedbaseline data reported.Increased adherenceto evidence-based careobserved in 20 KPIs.

V QI ProjectTwo-month pilotfacilitator 4/12

Multidisciplinaryeducation

20 KPIs

Mullick et al.200941

UnitedKingdom

Perception ofcarers of peoplewho had diedon LCP in acutecare.

Prospective carersurvey based onthe LCP domainsof care. Nocontrol.

Survey offered to 42consecutive carersover a 14-weekperiod.

Small sample (n¼ 25)precludes statisticalanalysis. 59% responserate. 84% reportedhigh levels ofsatisfaction.

V Carer survey

Paterson et al.200936

UnitedKingdom

Use of modifiedLCP in a short-stay emergencyward.

Mixed method.Retrospectivepost-LCP chartaudit. No control.Health careprovider survey.

Post-LCP audit(n¼ 61).

Open question websurvey (n¼ 17).

Descriptive statisticsonly. Survey themes:improved continuityof care, documentationof care, andcommunicationdteamand patient/family.

V Senior ClinicalLeadership

Medical facilitatorChanges to LCP: IVinstead of SC medsand hourlyobservationsinstead of fourhourly

Lo et al.200916

China Use of modifiedLCP for peopledying fromcancer in an inpatientpalliative care unit.

RetrospectivebenchmarkingLCP chartauditdthree sites:Rotterdam, UnitedKingdom, andChina. Unmatchedsample. No control.

Post-LCP auditChina (n¼ 51);compared withUnited Kingdom(n¼ 40) andRotterdam (n¼ 40).

Descriptive statistics only.25% missing datadawareness ofdying and religious orspiritual needs.

IV Modified LCP:focused onseven of the 18domains.

Symptom assessmentsdone eight hourlyinstead of fourhourly becauseof workforceissues

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The Marie CuriePalliative CareInstitute, 200953

UnitedKingdom

Impact of LCPon EOL care inacute hospitals.

Retrospective LCPchart audit. Repeat2007 methodology.54

No control.

Invitation sent to214 hospitals in140 acute caretrusts. Audit of30 (max)consecutive deathson LCP in eachparticipatinghospital fromOctober 2008eDecember 2008. 155hospitals from 114acute hospital trusts(n¼ 3893 patients)participated.

68% of sites using LCP.21% of all patients whodied were on LCP. 39%of sites had an LCPfacilitator and 99% ofsites have an SPC team.61% of people on LCPhad a diagnosis otherthan cancer. 33 hoursmedian time on LCP.Drugs prescribed foragitation andrestlessness were onlygiven in 37% of cases.

IV Audit toolCentralized auditprocess

Veerbeek et al.200842

TheNetherlands

Impact of LCP oncommunicationand carers’bereavement.

Retrospectivepre-post test designquestionnaireadministered threemonths after death.No control.

Pretest (n¼ 131)and post-test(n¼ 140).

59% eligiblerelatives.

Similar patient andrelative characteristicsat both times. Evidencethat the LCPmoderately contributesto lower levels ofbereavement inrelatives.

IV Pathway usedacross multiplesettings

Veerbeek et al.200840

TheNetherlands

Impact of LCP onsymptomburden andcommunicationin seven settings:four oncologyunits, two agedcare facilities,and one homecare organization.

Mixed methods.Prospective pretest(2003e05) andpost-test (2005e06)chart audit. Nocontrol. Surveys:nurse and carer.

Pretest: chart audit(n¼ 220), nursesurvey (n¼ 219),and carer survey(n¼ 130).

Post-test: chart audit(n¼ 255); Survey:nurses (n¼ 253)and carers(n¼ 139).

No statistical differencein patientcharacteristics.Improvement inaspects of caredocumented with LCP(P< 0.001).Perception thatsymptom burden is lesson LCP: nurse(P¼ 0.008)and relatives(P¼ 0.016). Nurses’assessments notblinded.

IV Patient consentRNddata collectionrole

Hardy et al.200746

Australia LCP audit tool usedto identify EOLpriority areas inthree hospices,four hospitals,and one agedcare facility in a definedgeographical area.

Retrospectivebaseline LCPchart audit. Nocontrol.

Eight health careinstitutionscompleted thebaseline audit on20 consecutivecharts (n¼ 160).

Descriptive statistics only.Discussion focuses ondifferences betweensettings but data notprovided.

V Linked to LCPaudit team

Audit undertakenby participatingorganization

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Table 1Continued

Source Country Focus Design Participants OutcomesLevel ofEvidence Features

The Marie CuriePalliative CareInstitute, 200754

UnitedKingdom

Impact of LCP onEOL care in U.K.acute care sector.

Retrospective LCPchart auditd30(max) consecutivedeaths on LCP ineach participatinghospital fromSeptember 2006eNovember 2006.

Invitation sent to209 hospitals in108 acute caretrusts. 94 hospitaltrusts (n ¼ 2672patients) participated.

Descriptive statisticsonly. 40% of allhospitals and 60%of acute care trustsparticipated. Variationsacross setting. 15% ofpatients on LCP attime of death. Mediantime on LCP 33 hours.55% of patients hada non-cancerdiagnosis. 47% of siteshad an LCP facilitator.SPC team present at95% of sites.

IV Audit toolCentralized audit

process

Lhussier et al.200739

UnitedKingdom

Perception of healthprofessionals andbereaved carersfamiliar with theLCP in twoprimary caretrusts.

Qualitative study.Semistructuredinterviews.

Pathway facilitators(n¼ 22), nurses(n¼ 10), andbereaved carers(n¼ 10).

Multiple challengesidentified related tovariability acrosscare settings,communication withpatients, and theprovision of emotionalor spiritual support.Perception that ICPpromoted greater careconsistency, improvedcontinuity, andfacilitated proactivecare delivery.

QE ICP facilitator:Site Aebought in

specialist time tolead theimplementation

Site Bdgeneralisttime was boughtout to lead theimplementation

Hugel et al.200650

UnitedKingdom

Management ofRTS in peopledying on the LCPin a specialistpalliative careunit.

Retrospectivepretest andprospectivepost-test chartaudit. Nocontrol.

Matched sample.ProspectivedatadRTS patientson glycopyrronium(n¼ 36) comparedwith those onhyoscine (n¼ 36)(retrospective data).

Glycopyrronium groupmore likely to havea response thanthe hyoscine group(P< 0.01). Nostatistical differencein the levels ofagitation observed inthe glycopyrroniumand hyoscine groups.

IV Evaluation symptommanagement

Veerbeek et al.200621

TheNetherlands

Comparison of EOLcare in an

Retrospectivebenchmarking

40 deceased recordseach site (n¼ 80).

Descriptive statisticsonly. 9/14 goals of

IV LCP audit toolBenchmarking

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inpatient palliativecare unit in TheNetherlands anda hospice in theUnited Kingdom.

LCP auditcomparing twosites. No control.

Matched sampleby age and gender.

care achieved for>80% of deceasedat both sites.

Gambles et al.200638

UnitedKingdom

LCP perceptionsof hospiceclinicians.

Qualitative study.Semistructuredinterviews.

Nurses (n¼ 8).Doctors (n¼ 3).

Perceptionthat the LCP has arole in thehospice setting;improvesdocumentation,promotes continuityof care, and enhancescommunication andcare of relatives.

QE Ongoing LCPeducation andfeedback

Hinton andFish, 200635

Ireland Use of a modifiedLCP for peopledying in an acuterenal ward.

Retrospectivebaseline andpost-LCP chartaudit. Nocontrol.

Baseline sample(n¼ 10) andpost-LCP(n¼ 10).

Small sample precludesstatistical analysis.

V Modified LCPEducation programClinical championtwo days/week

Link nurseAudit

Main et al. 200644 UnitedKingdom

Use of an SCP forolder peopledying in acutecare.

Retrospectivebaseline andpost-SCP chartaudit. No control.

Baseline sample(n¼ 34) andpost-SCP sample(n¼ 35).

Preliminary dataImprovements in allSCP domains. Formalevaluation to beundertaken.

V Development SCPProject Team

Bailey et al.200518

UnitedStates

Use of inpatientcomfort careorder sets forpeople dying inacute care.

Retrospectivebaseline andpostcomfortcare order setsaudit of last sevendays of care. Nocontrol.

Baseline sample(n¼ 108) andpostcomfort careorder set plansample (n¼ 95).

Intervention improvedEOL care withan increase in themean number ofsymptomsdocumented, comfortcare order setsimplemented, andopioid and DNRorders (P< 0.001).

IV Physician leadVeteransClinician educationCase identificationdpocket card

Comfort care orderset with capacityfor active treatmentsto be maintained

Luhrs et al.200520

UnitedStates

Use of PCADpathway forpeople dying of cancerin acute oncologyward.

Controlledretrospectivebaseline and post-PCAD chart audit.Noncomparablesampling.

Pre-PCAD cancerdeaths (n¼ 10);consecutivemedical warddeaths (non-PCADor control group)during the

No significantcharacteristicdifference betweenpatient groups.Evidence thatintroduction ofPCAD improved EOL

IIIe3 QI teamAudit toolDiscipline-specifictemplates

EducationRole clarification

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Source Country Focus Design Participants OutcomesLevel ofEvidence Features

implementationperiod (n¼ 14); andpost-PCADconsecutive oncologyunit cancerdeaths (n¼ 15)managed on PCADpathway.

care with better goalsof care documentation(P ¼ 0.0001), fewerinterventions andmore symptomsassessed (P ¼ 0.004)and symptomsmanaged inaccordance toguidelines (P ¼ 0.02).

Evaluation-feedback tools

Bookbinderet al. 200519

UnitedStates

Impact of PCADpathway on patient’saccess to resources,communication, andcare delivery ina geriatric or oncologyunit (study units),palliative careunit (benchmark),or two generalmedical units(comparison).

Retrospectivebaseline andpost-PCADchart audit.

Pretest (n¼ 101).Posttest (n¼ 156).

33% of patientson the geriatric/oncology units and100% on the palliativecare unit died on thePCAD. Despite positiveresults, unable toconfirm if the PCADdrove improvementsin the care of thedying.

IIIe3 Quality improvementMultidisciplinary task

forceEducation programImplementation

strategyd‘‘clinicalchampion’’

Evaluation toolsand feedback

Mirando et al.200545

UnitedKingdom

Impact of LCP in18 clinical areasin six acutehospitals.

Retrospectivebaseline andpost-LCP chartaudit. Nocontrol.

Baseline (n¼ 50)and post-LCP(n¼ 50) chartaudit.

Small sample precludesstatistical analysis. 20%improvement in 9/16areas after LCPimplementation.

IV Designated fundsSteering committeeProject nurseStaged

implementationacross 18 clinicalareas

EducationSupportEvaluationClinical leadership

Grogan et al.200549

UnitedKingdom

Impact of ICP on EOLprescribing ina specialistpalliative careunit.

Retrospectiveaudit. Nocontrol.

Retrospectivechart audit(n¼ 68).

Descriptive statistics only.Agitation mostunstable symptom.Median dose of drugsin syringe driver didnot change betweenLCP commencementand death for allsymptoms and drugs.

V LCP used to evaluatesymptommanagement

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Kass andEllershaw,200351

UnitedKingdom

People who diedon the LCP ina specialistpalliative careunit with RTS.

Noncontrolledretrospectivetrial.

Sample (n¼ 202). Risk factors for RTS: male(P¼ 0.034), lungcancer (P¼ 0.003),and prolonged dying(P¼ 0.001). 59%people with RTS givenhyoscine. 35.5% diedwith RTS and 18.6%had no RTS-freeperiod.

IV LCP used toevaluate symptommanagement

Jack et al. 200443 UnitedKingdom

Use of LCP forpeople whodie in an acutestroke unit.

Retrospectivenoncontrolled baselineandpost-LCP chartaudit.

Baseline 2001e02(n¼ 20) andpost-LCP 2002e03(n¼ 20) on a U.K.stroke unit.

Descriptive statistics.Small sample sizes.Improvementsobserved in 6/7 keyareas assessed.

V Audit undertakenby research team

Jack et al. 200337 UnitedKingdom

Acute carenurses perceptionsof the LCP.

Focus groups(n¼ 2) andsemistructuredinterview (n¼ 1).

Sample (n¼ 15) Perception that LCPenhances EOLcare by improvingsymptom control andcommunication withrelatives/carers;increases EOLknowledgeand confidence; andpromotes morestreamlineddocumentation of careneeds and delivery.

QE

Fowell et al.200252

UnitedKingdom

Use of LCP diedin four distinctcare settings:acute care,hospices, specialistinpatient units,and communitycare.

Retrospectivebenchmarkingof LCP.

First 500 variancescomparing foursites: acute care(n¼ 133), hospices(n¼ 185), specialistinpatient units(n¼ 104), andcommunity care(n¼ 78).

Descriptive statistics only.No recorded variancefor 50%, implyingsymptoms controlled.Differences in variancerates across caresettings.

V Centralized auditprocess

Benchmarking

Ellershaw et al.200112

UnitedKingdom

Impact of LCP on EOLsymptom managementin an inpatienthospice unit in ahospital.

Baseline LCPaudit.

Inpatients (n¼ 168) Increased length of timeon ICP associated withbetter pain andagitation control(P< 0.01).

V

LCP¼ Liverpool Care Pathway; EOL¼ end-of-life; ICP¼ integrated care pathway; KPIs¼ key performance indicators; PCAD¼ Palliative Care for Advanced Disease Pathway; RTS¼ respiratory tract secretions;SCP¼ Supportive Care Pathway.Evidence levels: I,32 systematic review of all relevant randomized controlled trials; II,32 at least one properly designed randomized controlled trial; III-1,32 well-designed pseudo-randomized controlled trials;III-2,32 comparative studies with concurrent controls and allocation not randomized, case-control studies or interrupted time series with a control group; III-3,32 comparative studies with historical control, twoor more single-arm studies, or interrupted time series without a parallel control group; IV,32 case series, either post-test or pretest and post-test; V,33 case report or systematically obtained verifiable quality orprogram evaluation data; QE,31 qualitative evidence.

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Table 2Summary of Study Design, Populations, Settings, and Implementation Features

Features Source

DesignPrepathway chart audit 12,46Pre- and post-test pathway chart audit 6,18,19,20,22,35,40,43e45Post-test pathway chart audit 22,36Benchmarking 16,21,52e54Symptom control audits 49,50,51Surveydhealth professionals 6,36,39,40Surveydcarers 6,39,41,42Prospective consent 40Statistics reported 6,18e20,40,42,50Matched sample 21,50Controlled 20Qualitative studies 37,38

PopulationsMalignant 6,16,20,51Nonmalignant 35Geriatric 43,44Mixed (malignant, nonmalignant, and geriatric) 12,18,21,22,36,38e40,42,45,46,49,50,52e54

SettingsAcute care 18e20,22,35,37,41,43e45,53Palliative care unit or hospice 12,16,21,38,49e51Mixed (acute, hospice, and community) 6,39,40,42,52,54

Implementation featuresClinical champion 18,19,35,45Facilitator 35,39,45,53,54Education 18e20,35,45,53,54Defined performance indicators 22Quality Improvement approach 19,20,53,54Modified pathway 18,35,36In-house audit process (nonresearch team audit) 46,53,54

950 Vol. 41 No. 5 May 2011Phillips et al.

data,6 and only one study matched thegroups.21 A subset of chart audit studiesreported just baseline12,46 or post-pathwaychart audit data.22,36 The baseline pathwaychart audit data confirmed previous reportsthat people dying in the acute care sectorexperience varying levels of care dependingon who was responsible for managing thedying process.5,47 Inadequate symptom man-agement and poor communication within themultidisciplinary team and with patients andtheir families were noted.48

The majority of these chart audits involvedsmall sample sizes, reflecting a quality im-provement approach, which limited dataanalysis to descriptive statistics only. A pre-post test pathway study with a larger samplenoted some positive changes in end-of-lifecare delivery but, because of inability to con-trol for confounders, was unable to confirmwhether the pathway actually drove improve-ments in care of the dying.19 Another largepre-post test pathway study found that theintervention improved end-of-life care, with

an increase in the mean number of symp-toms documented, comfort care plans imple-mented, and opioid and ‘‘do not resuscitate’’(DNR) orders (P< 0.001).18 However, thissame study also reported an increase in theuse of restraints (P< 0.001), which is not re-flective of best practice end-of-life care.18 Amixed methods study using pre-post pathwaychart audits and carer follow-up obtained pa-tient consent demonstrating that prospectiveend-of-life care pathway studies are indeedpossible.40

Most studies provided details of the chartaudit selection process, but few defined the cri-teria by which ‘‘expected to die’’ was deter-mined.18 It is estimated that approximately50% of deaths in acute care cannot be pre-dicted, and it can be assumed that only half ofall retrospective baseline chart audit recordswould contain information suggesting that thepatient’s death was expected.4 These end-of-life prognostication challenges may accountfor some of the suboptimal pre-pathway imple-mentation results.6

Vol. 41 No. 5 May 2011 951Integrative Review of End-of-Life Care Pathways

Retrospective Symptom ManagementThree studies reported retrospective symp-

tom management pathway data.49,50,51 Amatched sample study without a control com-pared retrospective and prospective pathwaydata to determine the effectiveness of variousmedications to manage respiratory tract secre-tions.50 One other study retrospectively exam-ined the impact of the pathway on physicianprescribing,49 whereas another described theprofile of people who experienced excessive re-spiratory tract secretions at the end of life.51

These studies suggest that end-of-life care path-way clinical data could be used to determinefeasibility and design larger prospective multi-center controlled trials.

BenchmarkingThe widespread uptake of the end-of-life care

pathway has enabled benchmarking studiesinvolving local,52 national,53,54 or interna-tional16,21 comparisons to be undertaken.There may be scope for further larger bench-marking studies that would allow for morerobust evaluation of the impact of end-of-lifecare pathways on care outcomes at the patient,health professional, and system level, acrossjurisdictions.

Table 3Strengths and Weaknesses of Using an End-of-Life Care

Strengths

- Promotes the adoption of best evidence-based care for thedying regardless of setting and cliniciancompetencies12,36,40,43,45

- Increases the accessibility of palliative care outside ofspecialist services and/or units36,40,43

- Structures care and promotes proactive management ofpatient comfort40,42,61

- Clarifies the goals of care with the patient, family, and careteam21,36

- Promotes more effective multidisciplinary communication(patient, family, and care team)36,40

- Actively engages patients and families in decision making40

- Promotes patient-centered care36,40

- Provides a framework for addressing previously challengingcare issues40

- Implementation requires high-level organizationalsupport36,45

- Acts as a quality improvement and benchmarkingframework and audit tool12,21,40

- Reduces documentation requirements36

- Assists to identify further areas for research40

- Aligns care delivered with policy43

- Can be readily translated into other languages17,21

-

-

-

-

-

-

-

-

-

12

Implementation IssuesSome of the key strengths of the end-of-life

care pathway (Table 3) include a perceptionthat it increased the accessibility of palliativecare outside of specialist services or units36,40,43

and promoted the adoption of best evidence-based end-of-life care regardless of care settingor competencies.12,36,40,43,45 The capacity ofthe pathways to act as a template to guidethe delivery of care in the last hours or daysof life, regardless of setting, appears to havepropelled the pathways’ widespread adoption.The appointment of an experienced nurse asthe pathway facilitator for 12e18 months,45,48

selecting acute care wards with a significantburden of death, and piloting the pathway inunits with high-level clinical support18,36 alsowere singled out as important success factors.48

In the large U.K. benchmarking studies, hospi-tals with a pathway facilitator were noted tohave higher pathway compliance levels.53,54

DiscussionThis integrative review did not identify any

randomized controlled trials, and most studiesprovided low levels of evidence for the path-way’s effectiveness, despite its widespreadadoption. Notwithstanding this limitation, the

Pathway in the Acute Care or Hospice Setting

Weaknesses

Absence of evidence from a randomized controlledtrial25,27

Developed for a cancer population12

Modification may be required for a noncancerpopulation12,36

Dependent on timely recognition and diagnosing ofdyingdonly 50% of deaths in acute care are predicted21,44

Poorly defined death indicators18

Implementation challenging in a ‘‘cure culture’’12,36

Not linked to a palliative care pathway, which ought to becommenced well before the last 72 hours of life44

Requires strong clinical leadership with the capacity todevote the time and capacity required to successfully leadthe change process and provide ongoing monitoring18,36,45

A financial commitment and support to. establish designated pathway facilitators45

. provide the necessary learning opportunities required forclinicians to be confident about diagnosing dying andusing the pathway36

952 Vol. 41 No. 5 May 2011Phillips et al.

end-of-life care pathway has been used fora range of dying populations in a variety ofacute and hospice care settings across muchof the developed world. However, the lack ofevidence from pragmatic clinical trials meansthat only low-level evidence is available to sup-port the use of the end-of-life care pathway inthe acute care and/or hospice settings.

It is currently estimated that only 50% ofdeaths in acute care can be accurately pre-dicted.4,21,44 The lack of universally acceptedand validated criteria by which dying can beaccurately predicted in different populationsmay impact on health professionals’ prepared-ness to initiate an end-of-life care pathway.Implementing an end-of-life care pathway ispredicated on recognition of dying and multi-disciplinary team agreement that there are nopotentially reversible causes for the patient’sdecline that need to be addressed.18 Alterna-tively, the ability to predict death also mayreflect the fluctuating trajectories of peopledying from organ failure and the slow dwin-dling trajectories associated with dementiaand frailty, which make diagnosing dying inthese populations a complex process and aninexact science.55,56 Although the end-of-lifecare pathway may be applicable in the finaldays of life, it does not preclude advance careplanning early in the illness trajectory andmay in fact demonstrate the significance ofthis issue in priming the patient, clinician,and health care system for reform.7

Several studies provide insights into strategiesthat supported the implementation of the path-way and drive practice change. Clinical educa-tion sessions, strong clinical leadership,36,45

and the presence of a pathway facilitator45

were all identified as critical success factors, aswell as healthprofessionals having thenecessarycompetencies to initiate and use the path-way.18,48 One implementation study tappedinto a larger external physician education pro-gram on end-of-life care and provided educa-tion on a continuous cycle to manage juniorstaff rotations.18 All learning sessions were re-peated frequently to increase clinicians’ compe-tencies and assist with embedding change.18

Managing perceptions that the introductionof the pathway would be an additional docu-mentation burden and workload for cliniciansis an important aspect of the implementationprocess.48

The palliative care capabilities of the pathwayfacilitator appear to be central to ensuring thatthe dying patient’s transition onto the pathwayis appropriately negotiated and safelymanaged.The pathway facilitator also plays a key role inbuilding the palliative care capacity of healthprofessionals. Despite this positive relationship,the number of U.K. pathway facilitators actuallydecreased over time, reflecting a trend to usefacilitators for a definedperiod during the path-way implementation phase.45 Yet, what is notknown is whether appropriate pathway usagecan be sustained over time, especially in theabsence of a designated facilitator. This integra-tive review revealed that the settings effectivelyusing the pathway had evidence of clinical lead-ership, access to a pathway facilitator, availabilityof a specialist palliative care team, a structurededucation program and high-level organiza-tional support. These factors appear to be im-portant considerations if the end-of-life carepathway is to be safely and effectively used bynonspecialist palliative care to provide bestevidence-based care to dying people.There was limited acknowledgment in these

studies of the need for ongoing evaluation ofthe pathway’s effectiveness. Few studies explic-itly stressed the critical importance of integrat-ing individual clinical expertise and criticaldecision making into end-of-life care delivery.Strengthening this linkage is critical if theend-of-life care pathway is to be safely andeffectively implemented in the context andmanner in which it was intended to be used.This is particularly important given the globalfocus on extending best evidence-based careto dying people, regardless of care setting.57

LimitationsOnly studies in English were accessible for

this review, and issues relating to publicationbias need to be considered. Furthermore, giventhe resource limitations of this review, no at-tempts were made to access research reportedin the gray literature. These methodologicallimitations make it difficult to fully evaluatethe impact of the end-of-life care pathway oncare of the dying. However, the barriers to un-dertaking randomized controlled trials in palli-ative care are well noted,58 and this does notmean that the lessons learned from these stud-ies are not valuable in improving future care.

Vol. 41 No. 5 May 2011 953Integrative Review of End-of-Life Care Pathways

Implications for Future ResearchThe challenge of undertaking end-of-life

care research is well documented.58 This un-derscores the importance of using pragmaticclinical trial considerations. To date, few stud-ies have been able to accurately define immi-nent dying, describe the perceptions andexperiences of the families and carers withthe end-of-life care pathway, or explain the im-pact of care pathways on long-term bereave-ment outcomes. Greater understanding ofthe facilitator role also is required to gain in-sights into the degree to which this positionbridges the gap between health professionals’palliative care capabilities and their ability toeffectively determine when the use of an end-of-life care pathway is indicated. Further re-search also is needed to determine whethersafe and effective pathway usage can be sus-tained over time, especially in the absence ofa designated facilitator. It also is important toconsider the cultural aspects of death and,therefore, international comparisons of out-comes would be of particular interest.16

Because the use of end-of-life care pathwayshas become more widespread, several bench-marking studies have emerged; yet, the processfor setting these benchmarks is unclear. Usingsystematic approaches for developing ben-chmarks, deriving consensus, and endorse-ment by policy and professional bodies iswarranted.59,60

ConclusionEnd-of-life care pathways have been widely

implemented over recent decades in the ab-sence of evidence from randomized controlledtrials to support their use. In spite of this limita-tion, this review has identified some favorableoutcomes in adopting this approach, as well asbarriers to implementation. Furthermore,assessment of the impact of the end-of-lifecare pathways within pragmatic clinical trials isrecommended.

Disclosures and AcknowledgmentsNo funding was received for this study, and

the authors declare no conflicts of interest.

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