End Stage Heart Failure Guidelines

8/2/2019 End Stage Heart Failure Guidelines

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SYMPTOM CONTROL GUIDELINESFOR PATIENTS WITH END-STAGE

HEART FAILURE AND CRITERIA FOR

REFERRAL FOR SPECIALISTPALLIATIVE CARE

WORKING PARTY OF THEMERSEYSIDE AND CHESHIRE SPECIALIST PALLIATIVE CARE AND

CARDIAC CLINICAL NETWORKS

UpdateSeptember,2008

Reviewdate:September,2011

Working to improve the delivery of services for cardiac patients and their families

across Cheshire and Merseyside


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CONTENTS

PAGE

Introduction 3 5

Criteriaforreferraltospecialistpalliativecare 6

Symptomcontrolguidelines 7

1. Breathlessness 892. FatigueandLethargy 103. Cough 114. Pain 12 135. Nauseaandvomiting 146. Cachexiaandanorexia 157. Constipation 168. Psychologicalissues 179. Peripheraloedema 1810.Drymouth 1911.Withdrawalofmedication 2012.Deactivationofimplantablecardioverter 21 22

defibrillators(ICD)

13.Financialbenefits 2314.Spiritualsupport 2415.Terminalheartfailurethelastfewdaysoflife 25 2716.Carer/bereavementsupport 28

Membersoftheworkingparty(05) 29

References 30 31


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INTRODUCTION

Thefollowingguidelinesweredevelopedin2005andhavenowbeenrevised.

Thesearetobeusedasaguidetosupporthealthcareprofessionalstomanage

careofheartfailurepatientswhoareenteringthelaterstagesoftheir

condition. Theemphasisisonsymptomcontrol.

Theyaredesignedtobecomplimentarytostandardcardiologicaltreatment

anditisimportanttoconsiderwhetheradjustmentstostandardtreatments

arerequired.

Theydonotreplaceotherlocal/nationalguidelinesandaretobeusedin

tandem.

PALLIATIVE CARE IN HEART FAILURE

AccordingtotheWorldHealthOrganisation(2002),palliativecarecanbe

definedas:

anapproachthatimprovesthequalityoflifeofpatientsandtheir

familiesfacingtheproblemsassociatedwithlifethreateningillness,through

thepreventionandreliefofsufferingbymeansofearlyinterventionand

impeccableassessmentandtreatmentofpainandotherproblems,physical,

psychosocialandspiritual.

TheWHOalsostatesthatpalliativecare:

Providesrelieffrompainandotherdistressingsymptoms; Affirmslifeandregardsdyingasanormalprocess; Intendsneithertohastennorpostponedeath; Integratesthepsychologicalandspiritualaspectsofpatientcare; Offersasupportsystemtohelppatientsliveasactivelyaspossible

untildeath;

Offersasupportsystemtohelpthefamilycopeduringthepatientsillnessandintheirownbereavement;

Usesateamapproachtoaddresstheneedsofpatientsandtheirfamilies,includingbereavementcounsellingifindicated;

Willenhancequalityoflifeandmayalsopositivelyinfluencethecourseofillness;

Isapplicableearlyinthecourseofillness,inconjunctionwithothertherapiesthatareintendedtoprolonglife,suchaschemotherapyor

radiationtherapy,andincludesthoseinvestigationsneededtobetter

understandandmanagedistressingclinicalcomplications.


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TheNationalCouncilforHospiceandSpecialistPalliativeCareServices(2000)

identifiesthekeyprinciplesunderpinningpalliativecareas:

Afocusonqualityoflife,includinggoodsymptomcontrol; Thewholepersonapproachtakingintoaccountthepatientspastlife

experienceaswellastheircurrentsituation; Carethatencompassesboththepersonwithlifethreateningdisease

andthosethatmattertothem;

Respectforpatientautonomyandchoice(e.g.overplaceofcare,treatmentoptions,accesstospecialistpalliativecare);

Anemphasisonopenandsensitivecommunication,whichextendstopatients,informalcarersandprofessionalcolleagues.

Studieshaveindicatedthatpatientswithheartfailureareoftensymptomatic,

disabledandtheirsymptomshaveasignificantimpactontheirlifestyleandqualityoflife(Andersonetal2001;McCarthy,LayandAddingtonHall1996).

Physicalsymptomsarefrequentlyinfluencedbypsychological,spiritualand

socialissues,hencetheappropriatenessofaholisticapproachtocareandthe

importanceoftheinvolvementofdifferentmembersofthemultidisciplinary

team. Communicationissueshavealsobeenhighlightedtobeofvital

importance(Rogersetal,2000).

WithintheMerseysideandCheshireregion,aworkingpartycomprisedof

specialistsfrompalliativecareandcardiologywassetup. This

multiprofessionalgroupaimedtoformulatesymptomcontrolguidelinesforhealthcareprofessionalscaringforpatientswithendstageheartfailure,

focussingonthosesymptomsthatareparticularlycommonorespecially

troublesomeinthispatientgroup. Theworkingpartyhasalsodeveloped

referralcriteriatofacilitatetheidentificationofthoseendstageheartfailure

patientsforwhomreferraltoSpecialistPalliativeCarewouldbeappropriate.

Theguidelinesandreferralcriteriaarepresentedhere,alongwithrelevant

references.


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The following professionals were involved in the revision guidelines 2008.

CChhrriissttiinnee GGaarrddnneerrClinical Lead Nurse for Cheshire & Merseyside Cardiac Network.

DDrr.. CCllaarree LLiittttlleewwooooddMacmillan Consultant, Palliative Medicine, St. Helens & Knowsley HospitalsNHS TrustDDrr.. JJeennnnyy SSmmiitthhConsultant, Palliative Medicine, Countess of Chester NHS Foundation Trust

DDrr.. GGrraahhaamm WWhhyytteeSpecialist Registrar, Palliative Medicine, St. Helens & Knowsley Hospitals,NHS Trust

BBaarrbbaarraa FFlloowweerrssHeart Failure Nurse Specialist, Southport & Ormskirk NHS Trust

RReebbeeccccaa TTeellffeerrPalliative Care/Heart Failure Nurse Specialist, Halton & St. Helens, PCT

SSaarraahh OOHHaarreeCommunity Heart Failure Nurse Specialist, Knowsley PCT

The following Health care professionals have reviewed and added to theguidelines.

DDrr.. PPuullyyaa,,Consultant Cardiologist, Southport & Ormskirk NHS Trust

DDrr.. FFooxx

Consultant Cardiologist, Southport & Ormskirk NHS TrustDDrr.. CCrraaiigg GGiilllleessppiieeGP Clinical Lead for Cheshire & Merseyside Cardiac Network

DDrr.. MMeennnniimmConsultant Cardiologist, Southport & Ormskirk NHS Trust

DDrr.. JJ.. PPyyaattttConsultant Cardiologist, Royal Liverpool University Hospitals NHS Trust

DDrr.. SSoommaauurrooooConsultant Cardiologist, Countess of Chester Hospitals NHS TrustAAnnddrreeww DDiicckkmmaannSenior Pharmacist, Liverpool Marie Curie Institute

BBaarrbbaarraa PPeerrrryyLead Pharmacist Medicines Outcomes, Western Cheshire PCT

PPaauulliinnee RRoobbeerrttssPharmacy Advisor Care Homes, Western Cheshire PCT


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GUIDELINESFORREFERRALTO

SPECIALISTPALLIATIVECARE

(Allatthediscretionofthereferrerandinconjunctionwith

clinicalassessment)

CRITERIAFORREFERRALTOSPECIALISTPALLIATIVECAREinclude

Patientandmedicalteam(consultantorGP)awareofandagreetoreferralto

specialistpalliativecare

PLUSTWO

OR

MORE

OF

THE

FOLOWING:

1. Patientknowsthattheyhaveaconfirmeddiagnosisofheartfailure2. Advancedheartfailure(NewYorkHeartAssociationGrade3or4*at

discretionofhealthcareteamorcardiologyteam)onoptimalmedical

therapywhoarenotcandidatesforrevascularisation(cardiacre

synchronisationtherapy(CRT)noncardiactransplantation).

3. Anticipatedlast12monthsoflife4. Threeadmissionstohospitalwithinthelast12monthswithsymptoms

ofdecompensatedheartfailure

5. Physicalorpsychologicalsymptomsdespiteoptimaltoleratedtherapy(+/ deteriorationinrenalfunction)

*NewYorkHeartAssociationGrade3or4markeddyspnoeaonordinaryorany

exertionorsymptomsatrest


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SYMPTOMCONTROLIN

ENDSTAGE

HEART

FAILURE

Symptomcontrolshouldcontinueinconjunctionwithactivecardiologicalmanagement,includingdiuretics,ACEinhibitorsetcas

longasthesemedicationsremainappropriate.

Theholisticapproachshouldbeapplied,consideringphysical,psychological,spiritualandsocialaspects.

Itisimportanttoconsiderwhetherthereareparticularthingsworryingorfrighteningthepatientandtoexplorethemeaningofasymptomwithapatientforexample,aspainorbreathlessnessworsen,dothey

assume`Iamgettingworse`?

Involvementofallmembersofthemultidisciplinaryteam,includingphysiotherapist,occupationaltherapist,socialworker,psychologist,

chaplainmaybeappropriate.

Optimumpalliationofthesymptomsofheartfailureoftendependsoncompliancewithmedication,especiallywithdiuretics.

Intheeventofdeteriorationofsymptomsatreatableprecipitant,e.g.noncompliancewithmedication,chestinfection,anaemia,

thyrotoxicosis,recentMI,arrhythmia,shouldbeexcluded.

Thesepalliativecareguidelinesfocusonsymptomcontrolforpatientswithendstageheartfailureandwhereappropriateshouldbeusedin

conjunctionwithnationalandlocalguidelinesformanagementofheart

failure,includingNICEguidance(2003).


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1. BREATHLESSNESS

Considerpossiblecausesofbreathlessnessotherthanheartfailuresuchas

pharmacologicalcausese.g. blockersandpsychologicalcausesincluding

anxiety.

PHARMACOLOGICALMANAGEMENT

Oxygen,humidifiedifpossiblestartingat24%andcontinuingatthisconcentrationifcoexistentCOPD. Consideruseofnasalspecs.

HomeOxygenService

TheDepartmentofHealthdocumentHomeOxygenServicewaslast

modifiedinMarch2007. Informationforpatients,relativesandcarers

canbefoundontheNHSwebsiteat:http://www.homeoxygen.nhs.uk

o GPscanprescribeoxygenforsymptomaticreliefinPalliativecare.

o DistrictNursesareabletoauthoriseoxygentherapyathomebyfollowinglocalarrangementsfortheassessmentandprescriptionofoxygen.

o Riskassessmentisneededregardinganysafetyhazardsthatmaybepresent,forexampletriphazardfromoxygengivingset.

Patientsandrelativesmustbeawarethatitisessentialthey

refrainfromsmokinginthesameroomastheoxygencylinder.

o ThesupplierfortheNorthWestofEnglandiscurrentlyAirProducts. Fax:0800214709andTelephone:0800373580.

o HomeOxygenOrderForm(HOOF)mustbecompletedandfaxedtothesupplier.

o Thesupplierwilldelivertheoxygencylindertothepatientshomewithin4hoursiforderedasanemergency. Theemergencyorderisvalidfor3days,therefore,anonemergency

HOOFmustbecompletedaswelliftheoxygenisrequiredfor

morethan3days.

o ThesupplierinvoicesthePCT,therefore,theMedicinesManagementTeammustbeinformedoftheorder.

o TheGPmustbeinformedoftheorderiftheyhavenotbeentheprescriber.

o Whentheoxygenisnolongerrequiredthesuppliershouldbeinformedimmediatelysothatthecontractiscancelledandcollectionofequipmentcanbearranged. ThePCTwillcontinue

tobechargedforoxygenconcentratorsthathavenotbeen

cancelled.

o Insomeareas,fireandrescueadvocacyservicewhowilldoahomeriskassessment.

ContactNos: Merseyside: 08007315958 Ref:244

Cheshire: 01606868656


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LowdoseOramorphaninitialstatdose2.5mgcanbetried,then

2.5mg4hourly,titratingupevery48hoursasneededandtolerated.

Rapidreleasemoreofteneffectiveforcontrolofdyspnoeathansustainedrelease(MST,MXL).

Ifthereisrenalimpairmentuselowerdoseinitially. Consideruseofprophylacticlaxativeswhencommencingstrong

opioids.

Inpatientswhoaresensitivetomorphine,alternativeopioidsmaybesuitable,andmoreadviceregardingthesecanbeobtainedfromthe

PalliativeCareTeam.

GTNspray12puffsp.r.n.contraindicatedinsevereaorticstenosis. Nebulised0.9%saline+/bronchodilatorsegsalbutamol2.5mgorterbutaline2.5mgprntoqds.

o Ifcoexistingangina,ensureavailabilityofGTNsprayasbronchodilatorsmayprecipitateanginainsuchpatients.

Bronchodilatorswillnotbelesseffectiveifthepatientisalso

taking blockers. Considermonitoringserumpotassiumevery

4weeks,ifappropriate.

Sublinguallorazepam0.51mgprntomax4mgperday,especiallyifthereisanelementofanxiety. Diazepam2mg5mgBDis longer

actingandcanbeconsideredassecondlineagent. Thiseffectmaybeusefulbutcanaccumulateinhepaticimpairment.

Nonpharmacological.

Dyspnoeamanagement,includingbreathingretraining,especiallyifhyperventilationaproblem.

Occupationaltherapylifestyleadjustmentstominimiseunnecessaryexertion.

Psychologicalsupportappreciatingimpactonlifestyle. Anxietymanagementandeducationremanagementofpanicattacks. Relaxation. Complementarytherapies. Fan Useofreclinerbed


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2. FATIGUEANDLETHARGY

Thisisextremelycommonandverydifficulttotreatsymptomatically.

Commoncausesare:

LowcardiacoutputorlowBP: seekadviceoftheheartfailureteamrepossibleadditionofdigoxin(lowdose)orreductionofbetablocker,

AngiotensinConvertingEnzymeinhibitor(ACEI)/AngiotensinII

ReceptorAntagonist,diuretics.

Sometimesitisnecessarytoreducemedicationwhichisofproven

clinicalbenefitbecausesideeffectsofhypotensionandfatigueare

unacceptable.

Hypovolaemiasecondarytoexcessivediureticsadjustdosageandfrequency.

Anaemiaconsiderinvestigation/treatmentbyheartfailureteam. Hyponatraemia/hypokalaemia checkureaandelectrolytes HypothyroidismcheckThyroidFunctionTest

Considerlifestyleadaptation/OTassessmentreaids/appliances/nutritional

support.

Refercardiac/heartfailurerehabilitationprogrammeifavailable.


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3. COUGH

ProductiveCough Considerusualcausessuchaslowerrespiratorytractinfectionor

worseningpulmonaryoedema.

NonProductiveCough

IfanACEinhibitorhasbeencommencedrecentlyandcoughisalsorecentin

onset,consideritasapossiblecauseandrefertoHealthcareProfessional

managingtheirHeartFailuretreatment.

IfcoughislongstandingitisunlikelytobeduetoACEinhibitors. Donotstop

automaticallyandrefertotheHeartFailureteam.

Ifcoughcontinues,considerthefollowing:

Ifrelatedtodifficultyexpectorating0.9%salinenebules2.5mlsPRN.(amountactuallyabsorbedwhennebulisedminimal)

Coughsuppressants/expectorantSimplelinctus 5 10mlsPRNtoqds Codeinelinctus 510mlsPRNtoqds

Lowdoseoramorphstartingdose2.5mg,every

4hoursastolerated(mayalsohelpSOBandpain)

Consideruseofprophylacticlaxativeswhen

commencingstrongopioids.

Foralternativeoptionsiftheabovearenoteffective,considerreferraltoSpecialistPalliativeCare.


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4. PAIN

Ahighproportionofheartfailurepatientsexperiencepain,upto78%insome

studies. Thismayincludenonspecificgeneralisedpainincluding

musculoskeletal. Needtoconsiderpsychological,emotionalandspiritualaspectspain

maybeaffectedbypatient`smood,whatthepainsignifiestothepatient

(e.g.progressionoftheirillness).

Importanceofotherteammembersphysiotherapy,OT,DN,specialistnurses,socialworker,psychologist,chaplain.

Needfullassessmentofpain,site,possiblecauseetc. Remembertoconsiderothercausesandpathologiesinadditiontoheartfailure.

Analgesicladder(WHO)

ForSTEP3:

Commenceoramorphatdoseof2.5mguptofour hourly,titrateupasnecessary. Lowdoseoramorphmayhelpbreathingaswellaspain.

Reducedosefrequencyinrenalimpairment. Ifrenalfunctionismarkedlyimpaired,contacttheSpecialistPalliativeCareTeamforadvice

regardingalternativeopioids.

Whencommencingstrongorweakopioids,consideruseofprophylacticlaxatives.

Antianginalmedicationifangina. Nonsteroidalantiinflammatoryagents/COX2Inhibitorsshouldbe

avoidedifatallpossibleastheyworsenheartfailure.

Ifburdenofpainoutweighsriskoftreatmenttheyshouldbeusedwith

cautionandfullexplanationgiven.

Nonopioid(eg

paracetamol)

+/ adjuvant

Weakopioid

e.g.Codeine30mg

+/ Step1analgesia

Strongopioide.g.

Morphine2.5mg 5mg

+/ Ste 1anal esia

STEP1

STEP2

STEP3


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Goutisalsoverycommonandoftenduetodiuretictherapy. Usecolchicinefirstline500microgramb.dtoq.d.suntilpain

relievedorvomitingordiarrhoeaoccur.

DiuretictherapySHOULDNOTbediscontinued. ConsiderdosereductionseekadvicefromtheHeartFailureteam.

AllopurinolshouldNOTbecommencedinacuteattackasitmayprolongpainorprecipitateafurtheracuteattack. Inpatientsalreadyonallopurinoltherapy,itshouldbecontinued

alongsideconventionaltreatmentofacuteattack.

ManagementofChronicGout

Considerstartingallopurinol12weeksafteracuteattackhassettled.

Start50100mgday.

Colchicineshouldbegiven500microgramdailyduringinitiationtoreduce

riskofacuteattack.

Maintenancedoseofallopurino. 100300mgdaily.Dosesneedtobeloweredaccordingtorenalfunction.

Estimated GFR Usual Maintenance Dose of Allopurinol

>80 ml/min 200-300mg daily

60-80 ml/min 100-200mg daily

30-60 ml/min 50-100mg daily

15-30 ml/min 50-100mg alternate days

On Dialysis 50- 100 mg weekly


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5. NAUSEAANDVOMITING

Patientswithadvancedheartfailuremayhavemultiplecausesofnauseaand

vomiting. AntiemeticsshouldbegivenregularlyandnotPRN

Considerdrugcausefornauseaandvomiting. Ifconstantnauseaorifrenalimpairmentorrenalfailure,

haloperidol1.5mg 3mgorally/scnocte. IfconvertingtoSCroute

thedosageishalvedi.e.3mgorally=1.5mgSC.

LowdoseLevomepromazine3mg6mg,ifconvertingtoSCdose6.25mgis

used.

Ifrelatedtomeals,earlysatiety,vomitingofundigestedfood,hepatomegalyorlivercongestion,

metoclopramide10mgpo/SCtds.

domperidone10mg

po

tds

Ifthepatientisnauseatedmuchofthetime,vomitingorconsideredtohave

gastricstasis,itmaybeappropriatetoconsideradministrationbyalternative

routestooral,includingsubcutaneousinjectionsorbycontinuous

subcutaneousinjection(viasyringedriver),asoralantiemeticsmaynotbe

adequatelyabsorbed.

Avoidcyclizineasthismayworsenheartfailure.


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6. CACHEXIAANDANOREXIA

Patientswithheartfailuremayhavepoorappetiteandlosesignificant

amountsofweight. Poorappetiteisexacerbatedbybreathlessness,

fatigue,oedema,drugreactions,renalimpairmentanddepression. The

combinationofreducednutritionalintakeandincreasedrequirementsplacethepatientwithheartfailureatriskofmalnutrition. An

unintentionalweightlossof10%in36monthsisindicativeof

malnutrition.

Thefocusofearlierdietaryadvicemayneedtoberevisedonthebasisof

reassessment. Avoidsteroidsfortreatmentofanorexia.

Dietaryadvicecanbeconfusingtothisgroupofpatients;theymaybe

followinglowfatordietprogrammeswhichmaybetoolowinenergy

fortheirchangingneeds. Patientswhoincreasetheirnutritionalintakeandpreventfurtherweightlossorincreasetheirnonoedematousweight

mayhaveanimprovedsenseofwellbeingandimprovedbodyimage.

Theremaybefamilyexpectationsrelatingtofoodintakeandthiscanmake

mealtimesstressful. Ingeneral,givepermissionforthepatienttoeatas

muchoraslittleofwhatevertheywant. Encouragesmallfrequentmeals

andsnacks. Manypatientsmaybefollowinganoaddedsaltdiet,based

onpreviouslygivendietaryadvice. Iftheyarestrugglingwiththe

palatabilityofanoaddedsaltdietthiscanberelaxedtoimproveintake.

Patientsmayneedassistancewithcookingandshopping. Useoforal

nutritionalsupplementaldrinksmaybeappropriate. Referraltodieticianforadvicewouldbebeneficial.


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7. CONSTIPATION

Maybetriggeredbyreducedintakeoffluidsandfood,diuretics,immobility,weakorstrongopioids(NBconsiderprophylacticlaxatives

whencommencingthese).

Itmaybenecessarytouseafaecalsoftener,astimulantlaxativeoracombinationproductofthetwo. DosesgivenbelowarethoseintheBNF,buthigherdosesmaybe

neededinpalliativecarepatients.

Faecalsoftener

Sodiumdocusateupto500mgdailyindivideddoses. Lactulosesolution initially15mlstwicedaily,adjustedaccording

tothepatient`sneeds.

Movicolsachets13sachetsdailyindivideddosesusuallyforupto2weeks. Thecontentsofeachsachetshouldbedissolvedinhalfaglass(approx125ml)ofwater. Maintenancedose12sachetsdaily.

(Cautionmaybeneededduetothefluidvolumeandsodiumcontent.)

Idrolaxsachets 12sachetshaslesssodiumcontent. Magnesiumhydroxide25mls50mlswhenrequired. Thismaybe

usefulinresistantcasesandmaybealsohelptorelievecoexisting

gastricsymptoms. However,careisneededinpatientswithmoderate

orsevererenalimpairment.

Stimulantlaxatives

Senna24tablets,usuallyatnight. Initialdoseshouldbelowthengraduallyincreased.Combinationofsoftenerandstimulant

Codanthramer(danthronandpoloxamer)12capsulesor5mls10mlsofsolution(25/200in5mls)atnight.

Codanthrusate(danthronanddocusate)13capsules,usuallyatnight,or5mls15mlsofsuspensionatnight.

Theuseoftheseisonlylicensedinterminalillness.


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8. PSYCHOLOGICALSYMPTOMS

Psychologicalissuesandfactorscontributingtotheseinclude:

Lowmood Depressionofwhichthereishighincidence,atleast1/3ofheart

failurepatients.

Suggest

use

of

appropriate

screening

tool

e.g.

PHQ9.

Insomnia Anxiety Medicationshouldbeconsideredincluding

- Antidepressants.Avoidtricyclicantidepressantsinviewofcardiotoxicside

effects.

Sertraline50mgisasuitablefirstlineagentunlessanxiety/

depressioninwhichcasecitalopram10mg20mgdailywould

beappropriate. Checkforhyponatraemiaifappropriate.Mirtazapine 15mg30mgnocteisanotheralternative

especiallyifnauseaorpoorappetiteareassociatedproblems.

- Nightsedation egLorazepam 0.5mg1mgnocteTemazepam 10mg 20mgnocte

- Anxiolytics Lorazepam0.5mg1mgnoctes/lespeciallyforpanicattacks

Diazepam2mgpoforanxiety

However,itisimportanttoexploreunderlyingissuesanddealwiththeseif

possiblebymeansofaholisticapproachinvolvingallappropriatemembersof

themultidisciplinaryteam. Itmaybehelpfultoexplorewhatthepatient

thinksispreventingthemfromsleeping,whatmakesthemanxious,whythey

feellow.


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9. PERIPHERALOEDEMA

Peripheraloedemainheartfailureisoftensecondarytorightheartfailureasa

directconsequenceofleftheartfailure(congestivecardiacfailure). Thereare

alsoothercausesincludingdependentoedemafromimmobilityandside

effectsfrommedicatione.g.Amlodipine. Complicationscanincludelegulceration,pressuresores,stasiseczemaandcellulitis. Itcanrangefromvery

milddependentankleoedematoverysevereassociatedwithascites,scrotal

oedemaandthoracicoedema(anasarca).

Firstlinetreatmentofperipheraloedemasecondarytofluidaccumulationfromheartfailureisdiuretictherapy. Frusemidemay

notbeabsorbedastheremaybeassociatedgutoedema. Bumetanide

tendstobeabsorbedbetter. Intravenousdiureticsmaybenecessary. A

Frusemideinfusion(250mg/150mls@2mls/hour)isanexcellentwayof

removingfluidoverloadandismoreineffectivethanbolusFrusemideinjections.

Pruritus/dryskinaqueouscream+0.5%mentholmaybeuseful. CompressionbandaginginputfromDN,lymphoedemanurses,tissue

viabilitynursesasappropriate.

Scrotalsupportforscrotaloedema. OTassessmentsneedtoadjustexpectationsofpatientsandcarers. SocialWorkerservicesathome. Districtnursingteammayreviewneedforfurtherequipmentathome

e.g.pressurerelievingmattress,profilingbedandrefertootherse.g.

tissueviabilitynurse.


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10.DRYMOUTH

Assessforanyunderlyingcause.

Maybeduetooxygentherapy,medication,underlyingoralthrush.

Icecubes Chewinggum Pineapplejuice/chunks Oralbalancegel requiresÀCBSònaprescription Salivaorthanaoralspray,Glandosane,BioXtra,Salivese,Salivix

theseareonlylicensedfordrymouthduetoradiotherapyorSicca

syndromeandrequireÀCBSònaprescription.

Luborantlicensedforallcausesofdrymouth.Considerunderlyingtreatablecausese.g.oralthrush(especiallyifriskfactorssuchasrecurrentantibiotics,corticosteroids)


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11. WITHDRAWALOFMEDICATION

Asthepatientsconditiondeterioratesandtheirprognosisisreducedto

weeks,itmaybeappropriatetoconsiderwithholdingorstoppingsome

medication. Oftenheartfailurepatientshavepolypharmacyissues,andany

non essentialmedicationmaybewithdrawn,minimisingsideeffectsandnumberoftabletstoswallow.

Statintherapycanbestoppedastherationaleistoreducecardiovasculardiseaseeventsandtotalmortality. Cholesterolisnotan

issueatthisstage,andmanypatientsmaybecachexic.

blockertherapymaybereducedorstoppedastheymaydepressthemyocardiumfurther,butreassessifarrhythmiasaresuspected.

Ifbloodpressureisloworrenalfunctionpoor,thenreassesstheneedforACEInhibitors/Angiotensinreceptorblockers.

Ifnoevidenceofangina,reviewtheneedfornitratesandotherantianginals,suchasNicorandilorcalciumchannelblockerse.g.AmlodipineespeciallyifactivityisminimalandBPmaybelow. If

symptomsrecurthencanreintroduce.

Asprinmaycausegastricirritation,especiallyasoralintakemaybepoor.

Warfarintherapyismonitoredbyinvasivebloodtestsandmaybestopped.

Otherformsofmedicationusedforothercomorbiditiesmaybewithheldorstoppedsuchasosteoporoticmedication.

Diuretictherapyshouldbemaintainedasneededforsymptomcontrol,

givenviaanappropriateroute.

GivingFrusemidehasbeenshowntobeeffectivewhengivensubcutaneously

inhealthyvolunteers. Onesurveyshoweditwasusedbyupto60%centres

caringforanelderlypopulationbutitseffectivenesswasnotexamined.

Doseusedsubcutaneouslyissamedoseasintravenousunlessthereisa

reactionatsiteofadministrationthatpreventsabsorption

Dosecanbegivenasstatorviacontinuoussubcutaneousinfusion.Itcanbeinfusedover24hrs,mixingwithwater.Thereislimiteddataordrug

compatibilitysoitisnotrecommendedtomixwithanydrugs. The

subcutaneousrouteisunlicensed.


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12. DEACTIVATIONOFIMPLANTABLECARDIOVERTER

DEFIBRILLATORS(ICD)

ManypatientsacrossCheshireandMerseysidehaveundergoneacardiac

procedurewhichgivesthemanImplantableCardioverterDefibrillator(ICD)device.Thisinterventionisperformedinordertopreventsuddencardiacdeathfromcertainlifethreateningarrhythmias.Theimplantcandetectsuch

anevent,anditisprogrammedtodeliveraninternalshocktothe

myocardium,totryandrestoreanormalcardiacrhythm.

Sometimes,anICDmaybecombinedwithaspecialtypeofpacingdevice,but

thistypeofdeviceisnotusedineverypatient.

Therearedeviceswhichpacetheatrium,andotherswhichsynchronisethe

wayinwhichbothventriclesbeattogether;i.e.biventricularpacing,better

knownasCardiacResynchronisationTherapy(CRT). SomewilljusthavetheICDonitsown.

DeactivationoftheICDisnecessarywhenitisdeemednolongerappropriate

forshockstobedeliveredtotheheart.Thisisespeciallysowhenapatient

nearstheendoflifewithadvancingdisease.

AcrossCheshireandMerseyside,thesituationregardingtheneedfor

deactivationhasbeenrecognised,andworkwasundertakentocompletea

protocol(Oct2007)tohelppatientsandstaffreachthisdecision,attheright

timeforthepatient.ItalsosupportstherequiredactionstoundertakedeactivationoftheICDdevice,whenthisdecisionisreached.

Toreiterate

ThedecisiontowithdrawtheICDtherapymustbemadebytheDoctorinchargeof

thepatientscareinconsultationwiththemultidisciplinaryteam,andhavingfirst

obtainedacompetentpatientsconsent.Ifthepatientlacksthecapacitytoconsent,the

Doctormustconsiderwhetherthereisavalidandapplicableadvancedecisioninforce

and/orwhetherthereisanAttorneywhohasbeenappointedunderaLastingPower

ofAttorney(LPA)(MentalCapacityAct2005,) whocangiveconsenttowithdrawal.

Ifneither

is

in

place,

the

decision

must

be

made

on

the

basis

of

the

patients

best

interestshavingfirstcompliedwiththestatutorydutytoconsultthoseclosesttothe

patient,andthosewithaproperinterestintheirwelfaree.ganyoneprovidingcareto

thepatientonanunpaidbasis. Ifthereisnoonewithwhomitispracticaland/or

appropriatetoconsult,anIndependentMentalCapacityAdvocate(IMCA)mustbe

consultedinstead,andtheirviewtakenintoaccountbeforeadecisiononbestinterests

isreached.(CMCN2007)


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Forfurtherinformation,pleaseconsulttheCMCNDocumentTheDecision

towithdrawImplantableCardioverterDefibrillator(ICD)Therapyinan

AdultPatient.

Deactivationdecisionsonpatientsshouldbemadeinatimelyfashionand

preferablyperformedinaclinicsetting.Ifthisisnotpossible,inCheshireandMerseyside,thelocalDGHcardiacphysiologystaffhavebeentrainedto

supporttheprocessinacommunitysetting,andlocalhospitalDepartment

leadsshouldbecontactedforhelpwiththissupport.


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13.FINANCIALBENEFITS

Disabilitylivingallowance(DLA)(if65yrs,ifneedhelpwithpersonalcare Normallyhelpshouldberequiredforatleastsixmonthsbefore

becomingeligibleforeitherofthesebenefitsSpecialrulesforDisabilityLivingAllowanceorAttendanceAllowance high

rateofallowanceifprognosisislessthansixmonths. Forapatienttoclaim

this,theDS1500andmobilitycomponentoftheDisabilityLivingAllowance

applicationshouldbecompleted. Ifapatientiseligibleunderthespecialrules

theydonotrequirehelpformorethansixmonthstobeentitledtothe

AttendanceAllowance.

Apatientiseligibleforfreeprescriptionsiftheyhaveacontinuingphysical

disabilitywhichmeansthattheyarenotabletogooutwithoutthehelpof

anotherperson.

Travelabroadshouldonlybeconsideredwithfullinsuranceforpatientswith

endstageheartfailureanddifficultymaybeencounteredwhenseekingthis.

AdviceregardingsuitablecompaniescanbeobtainedfromBACUPandfrom

theHospiceInformationService(Myers,2002). Adviceabouttravelling

abroadwithcontrolleddrugsisavailableonthewebsite

www.aintreehospitals.org.uk.

TheCitizensAdviceBureau(CAB)isausefulresourceforadviceand

informationregardingpracticalissuesincludingfinance. TheDisability

BenefitsHelpline(0800882200)mayalsobehelpful.


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14.SPIRITUALSUPPORT

Thisshouldbeassessedforallpatients.


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15.TERMINALHEARTFAILURE

Ahighproportionofpatientswithconfirmedheartfailure,upto4050%in

somestudies,willexperiencesuddencardiacdeath. Otherswilldeteriorate

moreslowly. InprimarycareitisgoodpracticetoworkwithintheGoldStandardsFramework(GSF). Patientswithadvancedstageheartfailure

shouldbeidentifiedonthesupportiveregisteranddiscussedatpractice

meetingsonaregularbasis.

Furtheradviceavailableonprognosticationprognosticindicatorguidance

onGSFwebsite

Itisoftenmoredifficulttodiagnosetheterminalphaseofheartfailurethan

cancer,however:

Needagreementwithintheteamaboutthepatient`scondition. Itisoftendifficulttoacceptthatdeteriorationdoesnotrepresentfailure

tothehealthcareteam.

Importanttorecognisepatientswhoappeartobeapproachingterminalphaseoftheirillness. Moredifficulttodiagnosedyinginheartfailure

thaninmanyterminalcancerpatientsandtodefinewhentheyarein

thepalliativephase.

Ifrecoveryisuncertain,thisneedstobesharedwithpatientandfamily.

Thesubgrouptoidentifyisthosepatientswith:

- Previousadmissionswithworseningheartfailure- Noidentifiablereversibleprecipitant- Receivingoptimumtoleratedconventionaldrugs- Worseningrenalfunction- Failuretorespondwithintwotothreedaystoappropriatechangein

diureticorvasodilatordrugs

- Sustainedhypotension Aspatientbecomesweaker&hasdifficultyswallowing,therewillbea

needtodiscontinuenonessentialmedications,butcontinuethose

whichwillprovidesymptomaticbenefit.


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Suchessentialmedicationsasanalgesia,antiemetics,anxiolyticsandopioidscanbeconvertedtosubcutaneousdoses,ifappropriategiven

continuouslyover24hoursviasyringedriverwithasrequireddoses

availableifneeded.

Shoulddiscontinuesuchinappropriateinvasiveproceduresasvenepunctureandcheckingoftemperature,bloodpressureetc. NeedtoestablishinappropriatenessofCPR,andmayalsoneedtodiscuss

withpatient&familystoppingofintravenoushydration.

Needregularassessmentofsymptomsandadjustmentofmedicationsifsymptomsnotadequatelycontrolled.

Psychologicalsupportofpatientandfamilyisveryimportant. Goodclear,butsensitivecommunicationisofparamountimportance.

Spiritualcareaccordingtopatient`sculturalandreligiousbeliefsimportant.

Ideally,wheneverpossible,thepatient`sterminalcareshouldbefacilitatedwithinthesettingoftheirchoice,andinaccordancewiththe

wishesofthepatientandfamily. Useofthedocuments`Preferred

PrioritiesforCare`(PPC)and`GoldStandardsFramework`(GSF)and

LiverpoolCarePathway(LCP)maypromotethis. Furtherinformation

isavailableontheEOLwebsite(endoflifecare.nhs.uk).


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BREATHLESSNESS

DiamorphineorMorphineatinitialdoseof12.5mgsc4to6hourlyifpatient

hasnot

beentakingoralmorphine.

Ifpatientisonoralmorphineorotherstrongopioid,seekadviceofPalliativeCare

Teamregardingappropriatestartingdoseofmorphine.Ifeffective,consider

commencingsyringedriverwithmorphine/diamorphine,dosedependentonthe

amountoforalmorphineandscdosesrequiredinprevious24hours.

Ifpatientisbreathlessandanxious,considermidazolam2.5mgscstat. If

effectivethiscanberepeatedormidazolamgiveninsyringedriverwith

morphine/diamorphineifappropriate,thedosedependentonrequirementsinthe

PAIN

Diamorphine1mg 2.5mgormorphine2.5mg5mgsc4to6hourlyifthepatientis

notonoralmorphine,andtitrateaccordingtoresponseandpain.

Ifpatientisalreadyonoralmorphineorotherstrongopioid,consultPalliativeCareteamforadviceonstartingdoseofstrongopioid

Ifpatientrequiringfrequentdoses,considersubcutaneousinfusionviasyringedriver

withdoseofmor hine/diamor hinede endentonre uirementsin revious24 hours

AGITATION,TERMINALRESTLESSNESS

Excludeprecipitatingfactorssuchasurinaryretention,faecalimpaction,

uncomfortablepositioninbed,andaddresstheseappropriately.

Midazolam2.5mg5mgscfourhourly. Ifrepeateddosesrequired,consider

commencingsyringedriverwithdosedependentonrequirementsofprevious24

hours.Morphine/Diamorphinealoneisnotappropriate

NAUSEAANDVOMITING

Haloperidol2.5mg 10mgover24hoursviasyringedriver

Levomepromazine6.25 12.5mgover24hoursviasyringedriveror6.25mgscasa

stat.

RETAINED SECRETIONS IN UPPER RESPIRATORYTRACT

Maybeofmajorconcerntothefamilybutmaynotbedistressingforthepatient.Patientistooweaktoexpectoratesecretions. Changingpositionofbedorraisinghead

ofbedmayhelp,andoncethepatientissemicomatosenursingincomapositionwill

bemostusefulfordrainageofretainedsecretions.

Ifsecretionspersistconsiderglycopyrronium0.2mg0.4mgscstatdoseor

0.8mg 2.4mgover24hoursviasyringedriverorhyoscinehydrobromide0.4mgsc

stator1.2mg2.4mgscover24hoursviasyringedriver.

Especiallyifelementofpulmonaryoedema,ifantimuscarinicsnoteffectiveconsider

useofparenteraldiuretics.

SCdoseoffurosemide=IVdosa eviase arates rin edrivermixedwithwater


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16. CARER/BEREAVEMENTSUPPORT

Contactlocalspecialistservicesforadvice.


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MEMBERSOFTHEWORKINGPARTY2005

DDrrCCllaarreeLLiittttlleewwoooodd ConsultantinPalliativeMedicine

StHelensandKnowsleyHospitalsandWillowbrook

Hospice

DDrrJJeennnniiffeerrSSmmiitthh ConsultantinPalliativeMedicine

CountessofChesterHospital

DDrrHHeelleennBBoonnwwiicckk AssociateSpecialistinPalliativeMedicine

LiverpoolMarieCurieHospice

BBaarrbbaarraaFFlloowweerrss HeartFailureClinicalNurseSpecialist

Southport&OrmskirkHospitals

AAnnddrreewwDDiicckkmmaann SeniorSpecialistPharmacist

StHelensandKnowsleyHospitalandWillowbrook

Hospice

MMaarrjjCCaarreeyy HeartFailureClinicalNurseSpecialist

KnowsleyNHSTrust

MMaarrggaarreettKKeennddaallll MacmillanConsultantNurseInPalliativeCare

NorthCheshireHospitalsNHSTrust

EEmmmmaaRRiicchhaarrddss DayTherapyTeamLeader

WillowbrookHospice

CChhrriissGGaarrddnneerr CardiacAdvisoryNurse

CentralLiverpoolPCT

BBaarrbbaarraaAApppplleettoonn HeartFailureNurseConsultant

UniversityHospitalAintree

CCllaaiirreeLLeewwiiss HeartFailureClinicalNurseSpecialist

UniversityHospitalAintree

SShhiirrlleeyyCCllaarree HealthyHeartServiceCoordinator

StHelensandKnowsleyPCT


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REFERENCES

AndersonH,WardC,EardleyA,GommSA,ConnollyM,CoppingerT,

CorgieD,WilliamsJL,MakinWP(2001)`Theconcernsofpatientsunder

palliativecareandaheartfailureclinicarenotbeingmet`.PalliativeMedicine;15:279286.

Cheshire&MerseysideCardiacNetwork

DecisiontowithdrawICDtherapyinanAdultPatient

www.cmcn.nhs.uk

EllershawJ,WardC(2003)`Careofthedyingpatient:thelast48hoursof

Life`.BMJ;326:304.

FonzoChristeC,VukasovicC,Wasilewski RascaAF,BonnabryP.Subcutaneousadministrationofdrugsintheelderly:surveyofpracticeand

systematicliteraturereview.Palliativemedicine2005;19:208219

GibbsJSR(2001)`Heartdisease`,inPalliativeCareforNonCancerPatients,

AddingtonHallJM&HigginsonIJ(Eds),OxfordUniversityPress,Oxford.

GibbsLME,AddingtonHallJ,GibbsJSR(1998)`Dyingfromheartfailure:

lessonsfrompalliativecare`.BMJ;317:9612.

JohnsonMJ(2007)ManagementofendstagecardiacfailurePostgraduateMedicalJournal;83395401

JordanK.M.,CameronJS,SnaitMZhangWDohertyM,SecklJ,HingoraniA,

JacquesR,NukiG,(2007)BritishSocietyforRheumatologyandBritishHealth

ProfessionalinRheumatologyGuidelinefortheManagementofGout

Rheumatology;46:13721374

McCarthyM,LayM,AddingtonHallJ(1996)`Dyingfromheartdisease`.

JournalofRoyalCollegeofPhysicians;30(4):325328.

McMurrayJJ,StewartS(2000)`Heartfailure:epidemiology,aetiology&

prognosisofheartfailure.Heart;83:596602.

MoulderE(2002)`Cancerisn`ttheonlymalignantdisease`BMJ;324:307.

MyersK(2002)`flyinghomeoronholiday:helpingpatientstoarrange

internationaltravel`.HospiceInformationService,factsheet27.


31/31

NationalCouncilforHospiceandSpecialistPalliativeCareServices(2000)

me:helping`PalliativeCare2000`.

NationalInstituteofClinicalExcellence(2003)`ChronicHeartFailure;national

clinicalguidelinefordiagnosisandmanagementinprimaryandsecondarycare`.

RogersAE,AddingtonHallJM,AberyAJ,McCoySM,BulpittC,CoatsAJS,

GibbsJSR(2000)`Knowledgeandcommunicationdifficultiesforpatientswith

chronicheartfailure:qualitativestudy`.BMJ;321:605697.

SpiekerLE,RuschitzkaFT,LuscherTF,NollG,(2002)Themanagementof

hyperuricaemiaandgoutinpatientswithheartfailureTheEuropeanJournal

ofHeartFailure4:403410.

SeplvedaC,MarlinA,YoshidaT,UllrichA(2002)`Palliativecare:theworld

healthorganization`sglobalperspective`,JournalofPainandSymptom

Control24(2):9196.

VermaAK,daSilvaJH,KuhlDR.Diureticeffectsofsubcutaneousfurosemide

inhumanvolunteers:arandomisedstudy.Annalsofpharmacology2004;4:38:

544549

WardC(2002)`Theneedforpalliativecareinthemanagementofheart

failure`.Heart;87:294298.

WehbyD,BrennerPS(1999)`Perceivedlearningneedsofpatientswithheart

failure`.Heart&Lung;28(1):3140.

www.endoflifecarenhs.uk

www.goldstandardsframework.nhs.uk/non_cancer.php

Documents

End Stage Heart Failure Guidelines