Myocardial Carnitine in End-stage Congestive Heart Failure. AJC 1989
End Stage Heart Failure Guidelines
Transcript of 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 requires`ACBS`onaprescription Salivaorthanaoralspray,Glandosane,BioXtra,Salivese,Salivix
theseareonlylicensedfordrymouthduetoradiotherapyorSicca
syndromeandrequire`ACBS`onaprescription.
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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www.goldstandardsframework.nhs.uk/non_cancer.php