Every Moment Counts - National Voices · A narrative for person centred coordinated care for people near the end of life Every Moment Counts

A narrative for person centred

coordinated care for people near the

end of life

Every MomentCounts

2

Appendix

•ProducedbyNationalVoicesandtheNationalCouncilforPalliativeCare,inpartnershipwithNHSEngland

•SupportedbytheAssociationofDirectorsofAdultSocialServices

•Coreproductiongroupsincluded:CarersTrust,CompassioninDying,HospiceUK,theMNDAssociation,SueRyderandTogetherforShortLives.ContributionsfromMacmillanCancerSupport

•Describessomecriticaloutcomesandsuccessfactorsinendoflifecare,supportandtreatment,fromtheperspectiveofthepeoplewhoneedthatcare,andtheircarersandfamilies

•Extends,andshouldbeusedtogetherwith,the‘generic’Narrativeforpersoncentredcoordinatedcare

•Basedon:aliteraturereview;bespokeresearchontheexperienceofbereavedcarers;coproductionwithpeoplewithexperience,includingcarersandprofessionals;aworkshopwithnationalorganisations

About this narrativeAbout this narrativeForeword

Note on terms used

Summary

Domains

We work for my goals and the quality of my life and death

I have honest discussions and the chance to plan

The people who are important to me are at the centre of my support

My physical, emotional, spiritual and practical needs are met

I have responsive, timely support day and night

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Appendix

DameCicelySaunders,thefounderofthemodernhospicemovementsaid:

“You matter because you are you, and you matter to the end of your life.”

Aswecommemoratethetenthanniversaryofherdeath,thisquoteremainsasrelevantaseverandmustremainaguidinglightforus.Weallfacetheprospectofdyingoneday.Mostadults,andmanychildren,experiencethelossofthosedeartothemwellbeforethathappens.Thisisanintenselypersonalhumanexperience.Everymomentcountsbecause,oncepassed,itcanneverberegained.

Thisnarrativeisanimportantmilestone.IthasbeencarefullyandpainstakinglyproducedundertheleadershipofNationalVoicesworkinginpartnershipwithNationalCouncilforPalliativeCareandotherorganisations.Ittellsus,unequivocally,whatpersoncentredcaremeansfromthepointofviewofsomeoneapproachingtheendoflife.WeusethisnarrativeasthecentrepieceforNHSEngland’sActionsforEndofLifeCare.

Asafront-lineclinician,Iknowthatintherealworld,itisdifficulttoachieveperfectionforeverybodyeverytime.Therecanbeamismatchbetweenwhatservicescanoffer,whatprofessionalshopetoachieveandwhattheperson,andtheirfamilies,carersandthoseclosetothemseekorexpect.Findingoutwhatreallymatterstothem–youcanalmost‘hear’thevoicesinthisreport–hastobeafundamentalstartingpointforallofus,andestablishesaproperpartnershipincare.

Everyone’sexperienceisunique:onesizecannotfitall.Thisnarrativeremindsprofessionalsandvolunteerstostop,thinkandrespondinawaythatis,andfeels,honestandpersonaltothatpersoninfrontofthem.Ithelpsserviceprovidersandcommissionerstolookattheservicetheyareentrustedtodeliverthroughtheeyesofthepersonwhoneedsthatcare.

Dr Bee Wee PhDMRCGPFRCP NationalClinicalDirectorforEndofLifeCare,NHSEnglandConsultantandSeniorLecturerinPalliativeMedicine,Oxford

ForewordAbout this narrative

ForewordNote on terms used

Summary

Domains






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Appendix

Inmanystatementsthisnarrativerefersto‘the people who are important to me’.

Thisgroupcanincludefamily,friendsandothercontacts,someofwhommaybetheircarer(s).

Thisphrasehighlightsthat:

• itisforthepersonnearingtheendoflifetodecidewhotheywantclosetotheminthatperiod

• therearepeoplewithdifferentkindsofimportance

•professionalsandservicesshouldrecogniseandinvolvecarers,andotherswhoareimportanttotheperson.

Westillwishtoemphasisetheimportantroleofcarersandtheneedforservicesandprofessionalstoinvolvethemandtoprovideinformation,adviceandsupportfortheirneedsandtheirrole.

Thus,wheremostrelevant,wealsousetheterm‘carer(s)’.

Note on terms usedAbout this narrative

Foreword

Note on terms usedSummary

Domains






5

Appendix

“I can make the last stage of my life as good as possible

because everyone works together confidently, honestly and

consistently to help me and the people who are

important to me, including my carer(s).”

SummaryAbout this narrative

Foreword

Note on terms used

SummaryDomains






6

Appendix

Domains

Person centred coordinated care near the end of life

“I can make the last stage of my life as good as possible because everyone works

together confidently, honestly and consistently to help me and the people who are

important to me, including my carer(s).”

My goals and quality of life

and death

The people who are important

to me

Honest discussion and

planning

Responsive and timely support

My physical, emotional,

spiritual and practical needs

About this narrative

Foreword

Note on terms used

Summary

DomainsWe work for my goals and the quality of my life and death



My physical, emotional, spiritual and practical needs are me


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Appendix

• Iamrespectedasawholeperson,nottreatedasanillness.

•MycareplanrecordsinformationaboutwhoIam:mylifeandpast,whatpeoplevalueaboutme,mystrengthsandabilities,andmyvalues.

•Peoplewhocareforandsupportmemakeaspecialefforttounderstandmylife.

•Peoplewhocareforandsupportmeandthepeoplewhoareimportanttome,carefor‘thewholeofus’.

• Icanremainincontrolasmuchaspossible.Thisisrecognisedasakeygoalinmycare.

•EveryonewhocaresforandsupportsmeworkstogethersothatI,andthepeoplewhoareimportanttome,canmakethemostofthetimewehavelefttogether.

We work for my goals and the quality of my life and death (i)


Foreword

Note on terms used

Summary

Domains

We work for my goals and the quality of my life and deathI have honest discussions and the chance to plan




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Appendix

• Icancontinuetoachieveleisureorwork-relatedgoalsthatareimportanttome,foraslongaspossible.

• Icanmaintainmysocialcontacts.

• Iamsupportedtomanagemysymptomsandconditionsassuccessfullyaspossible.

• Iamabletoliveasactivelyandindependentlyaspossibleatallstagesofmycareandtreatment.

• Ihavetimetosaygoodbyesandtodothingswhichareimportanttome.

•Mypreferenceformyplacetobecaredforandtodieisrespected.

• IamsupportedasmuchaspossibletostaywhereIwanttobe.

We work for my goals and the quality of my life and death (ii)


Foreword

Note on terms used

Summary

Domains

We work for my goals and the quality of my life and deathI have honest discussions and the chance to plan




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Appendix

• Ihavetimelyandhonestconversationswiththoseengagedinmycare,supportandtreatment.

• Iamconfidentthatstaffandprofessionalsareabletohavedifficultconversationswithme,inorderforustodecidethebesttreatment,careandsupporttogether.

•TheprofessionalsImeetcheckthattheseconversationsarehappeningandenterthemonmyrecord.

• Icanexpecttheseconversationstobefollowedup,andrevisitedatkeytimesduringthecourseofmycareandtreatment.

• Iandmycarer(s)arealwaysgivenanexplanationoftermsthatarenewtous,like‘palliative’.

I have honest discussions and the chance to plan (i)


Foreword

Note on terms used

Summary

Domains


I have honest discussions and the chance to planThe people who are important to me are at the centre of my support



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Appendix

• Iandthepeoplewhoareimportanttome,includingmycarer(s),areinformedaboutandunderstandouroptionsinrelationto:

– theillnessanditsuncertainties

– therisk,likelihoodandunpredictabilityofdying

– whatwillhappeninthefuture.

I have honest discussions and the chance to plan (ii)


Foreword

Note on terms used

Summary

Domains





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Appendix

• Ihaveinformation,intheformatIneedandthatIunderstand,aboutallaspectsofendoflifecare,includinghowtomakechoicesanddecisionsinadvance.ThisincludeshowtodecideonthingsIdon’twanttohappen.

•Thisinformationwillincludethefollowingpotentialchoices:

– anadvancecareplan

– advancedecisions

– creatingalastingPowerofAttorneyformyproperty andfinances

– creatingalastingPowerofAttorneyformyhealth andwelfare

– organandtissuedonation.

• Iaminformedthat,evenwhereIhavemadeadvanceplansandchoices,Ihavetherighttochangemymindatanypoint.

• Icanunderstandtheimpactofmyhealthandcareonmyfinances,andmakeinformedfinancialdecisions.

I have honest discussions and the chance to plan (iii)


Foreword

Note on terms used

Summary

Domains





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Appendix

• Icandecidethepeoplewhoaremostimportanttome,andhowinvolvedIwishthemtobeindecisionsaboutmycare.

• Imaychoosetoputcareandsupportfromthepeoplewhoareimportanttome,includingmycarer(s),atthecentreofmycareplan.Ifso,othercare,treatmentandsupportfitsaroundusandourpreferences.

• IfIdonothaveanunpaidcarer,thisisrecognisedinmycareplanandtheorganisationofmycareandsupporttakesaccountofit.

•Thepeoplewhoareimportanttome,includingmycarer(s)aregiveninformation,adviceandsupporttocareformeandtoensuretheirownneedsaremet.

•Mycarersarerecognisedasexpertpartnersinmycare.Theyarerespectedfortheirskillsandforthevitalknowledgetheyhaveaboutme,myconditionandmypreferences.

The people who are important to me are at the centre of my support (i)


Foreword

Note on terms used

Summary

Domains






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Appendix

•WhetherIamathome,orsomewhereelse–suchasacarehome,ahospiceorinhospital–thepeoplewhoareimportanttome,includingmycarer(s)are:

– welcomed

– listenedto,supportedandrespected

– madetofeel‘partoftheteam’

– giventimelyinformation

– involvedindiscussionsanddecisions.

The people who are important to me are at the centre of my support (ii)


Foreword

Note on terms used

Summary

Domains






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Appendix

•Mycarer(s)areappropriatelyinformedaboutwhatisinvolvedincaringforadyingpersonathome,andgivenpermissionandsupporttomakechoicesabouttheirrole.

•Mycarer(s)receivethetrainingtheywantandneedtocareforme.Thismayincludepersonalcareandsomenursingorclinicaltaskssuchasgivingpainreliefandmanagingmedicines.

• Iamsatisfiedthatmycarer(s)areinformedabouthowtobalanceworkandcareatallstages.

•Mycarersaresignpostedtoinformationabouthowtoaccessservicesthatproviderespitefromtheircaringrole.

• Iamconfidentthatthepeoplewhoareimportanttomewillhavetheopportunitytogetsupportwithbereavementbeforeandaftermydeath.

The people who are important to me are at the centre of my support (iii)


Foreword

Note on terms used

Summary

Domains






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Appendix

•Mycareplanisdesignedtomeetmyfaith,spiritualneeds,orothervaluesandbeliefs.

•Takentogether,theinformation,careandsupportIreceivehelpsmefeel‘atpeace’aboutwhatwillhappeninthefuture.Thismayinclude,forexample:

– thelikelycourseofmyillness

– whatisinvolvedinthedyingprocess

– anythingpracticalIshouldhavedonebut haven’tgotroundto

– money

– whatwillhappentomeafterIdie(spiritually)

– whatwillhappentomybodyafterIdie,including culturalorreligiouspracticesthatIwishtobe followed,andanywishesregardingorganor tissuedonation

– howthepeoplewhoareimportanttomewillcope afterIdie,andbesupportedtodoso.

My physical, emotional, spiritual and practical needs are met (i)


Foreword

Note on terms used

Summary

Domains






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Appendix

•WhereverIamcaredfor,Iamhelpedtofeel

– safe

– incontrolofmypain

– comfortableanddignified,

– withaslittlefearaspossible.

•Thereissomeoneathandtohelpwithmyworriesandfears,orthoseofthepeoplewhoareimportanttome.

My physical, emotional, spiritual and practical needs are met (ii)


Foreword

Note on terms used

Summary

Domains






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Appendix

• Ihaveacarecoordinatorwhosupportsmethroughdecisionmakingandactsasaproblemsolvertogetthingsdonequickly.

•Helpisavailabletomeetmyneedsatanytime,dayornight,frompeoplewhoknowaboutme.

•WhereverIam,Ihaveaccesstopainreliefandhelptomanagedifficultsymptoms.

• IhaveaGPpracticethatisawareofme,anticipatesmyneeds,andcommitstoactingquicklyandhelpingtocoordinatemycare.

•TherearenursesavailabletomewhenIamathome.Theyhaveenoughtimeformycare.Theyhavetimetotrainmycarer(s)ifthisiswanted.

• Inthetimeneartodeath,Iandallthosecaringformearebackedupbyaccesstospecialistadviceatanytimeofdayornight.

I have responsive, timely support day and night (i)


Foreword

Note on terms used

Summary

Domains






18

Appendix

•Thingsthatneedtohappen,dosoquickly

• Ifmyabilitytocommunicateortomakedecisionsdeteriorates,thoseworkingwithmeunderstandmyneeds.Theysupportmetoremainasinvolvedinmycareaspossible

•Whenappropriate,Ihavetheopportunitytovisitahospiceand/ortoexperiencehospicecareathome

•WhenIaminhospitaltherearefacilitiesdesignedforpeopleinmysituation,especiallyforthelastdaysandhoursofmylife

•Thehospitalcanaccommodatepeoplewhoareimportanttome,withaplacetorestandsleep,andthechancetomixwithotherpeopledoingsimilarcaring

•Supportandadvicefrompeoplewhohavebeenthroughthesameexperiencesisrecognisedasanimportantservice,andwearegiventheopportunitytouseit

• Icanhaveaccesstoapersonalcarebudgetthatiseasytounderstandanduse.

I have responsive, timely support day and night (ii)


Foreword

Note on terms used

Summary

Domains






19

Appendix1. Advance Decisions2. Advance Statements3. Advance Care Plans4. Lasting Power of Attorney – two kinds5. Donating my organs and/or my body6. For children and young people

Appendix

1. Advance Decisions

2. Advance Statements

3. Advance Care Plans

4. Lasting Power of Attorney – two kinds

5. Donating my organs and/or my body

6. For children and young people

Return to narrative

20

•AnAdvanceDecisionallowsmetomakealegallybindingrefusalofmedicaltreatment,inadvanceofatimewhenIlosetheabilitytomakedecisionsformyself.

• IcanuseittosetoutthespecificcircumstancesinwhichIwouldnotwantatreatmenttobegiven,orinwhichIwouldwantatreatmenttobestopped.

• Icanuseittorefuseanytreatment,includinglife-sustainingtreatmentsuchasresuscitation,breathingmachines,antibioticsorfeedingtubes.

•MyAdvanceDecisionwillonlycomeintoeffectifIlosethecapacitytomakedecisionsformyself.

•AdvanceDecisionisshortforanAdvanceDecisiontoRefuseTreatment(sometimesreferredtoasanADRT).ItisalsocommonlyknownasaLivingWilloranAdvanceDirective.


Return to narrative

Appendix

1. Advance Decisions2. Advance Statements





21

•AnAdvanceStatement(alsocalledaStatementofWishes)isageneralstatementofwhatIwantandwhatisimportanttome.

• ItiswrittendownandcontainsinformationIfeelitisimportantforotherstoknow,suchasmyfoodpreferences,religiousbeliefsordailyroutine.

• ItwillhelppeopleinvolvedinmycaretounderstandwhatIwantandwhatisimportanttomeifIcannotspeakormakedecisionsformyself.

• ItisnotlegallybindinglikeanAdvanceDecisionis,butitshouldbetakenintoaccountbyhealthandcareprofessionalswhendecidingwhatisinmybestinterests.


Return to narrative

Appendix


2. Advance Statements3. Advance Care Plans




22

•AdvanceCarePlanswillnormallybemadeinpartnershipwithmyhealthteamwhenIentertheend-of-lifephase.

•AnAdvanceCarePlanisusedtorecordmycareandtreatmentwishes.Itshouldbeattachedtomymedicalnotesandeasilyaccessibletothoseinvolvedinmycare.

•ForexampletheplancouldsetoutwhereIwanttoreceivecare,whereIwanttodie,whoIwanttobewithme,andmyreligiousorspiritualpreferences.

•Themostcommontypeofend-of-lifecareplanisaPreferredPrioritiesforCare(PPC)document.IfIhavemadeanAdvanceDecision,AdvanceStatementorLastingPowerofAttorneythisshouldbenotedinmyAdvanceCarePlan.

•MyAdvanceCarePlanisnotlegallybinding.Butithelpspeopleinvolvedinmycaretoknowwhatisimportanttome.Doctorswilltrytofollowmywishesandtaketheplanintoaccountwhendecidingwhatisinmybestinterests.


Return to narrative

Appendix



3. Advance Care Plans4. Lasting Power of Attorney – two kinds



23

•Thesegivelegalpowertoanotherpersonorpersonstomakedecisionsonmybehalf.Icanchoosetouseoneorbothkinds.EachkindinvolvesaseparateapplicationtotheOfficeofthePublicGuardianandregistrationfee.

•Ahealthandwelfarelastingpowerofattorneyallowsmetochooseonepersonormoretomakedecisionsaboutthingslike:mydailyroutine(suchaseatingandwhattowear);medicalcare;whereIamcaredfor;treatmentsthatkeepmealive.ThesepowerswillonlybeusedwhenIamnotcapableofmakingmyowndecisions.

•Apropertyandfinancialaffairslastingpowerofattorneyallowsmetochooseonepersonormoretomakedecisionsaboutthingslikecollectingbenefits,payingbillsorsellingproperty.IfIgivethempermissiontheycanstartusingthispowerstraightaway.


Return to narrative

Appendix




4. Lasting Power of Attorney – two kinds5. Donating my organs and/or my body


24

• Ihavetherighttodecidewhatmayhappentomybodyaftermydeath.

• IfIwishmyorganstobeusedfordonationtootherpeople,Ineedtoletpeopleclosetomeknow,andregistermyselfontheNHSOrganDonationRegister.

• Icanhavethechoiceofwhichorganstodonate.

• IfIwishtodonatemybodyforthetrainingofmedicalprofessionalsIneedtomakedirectcontactwiththemedicalschoolIwishtodonateto.

• IcanobtainalistfromtheHumanTissueAuthority.


Return to narrative

Appendix





5. Donating my organs and/or my body6. For children and young people

25

•Childrenandyoungpeopleundertheageof18yearswhoarenearingtheendoflifehaveadifferentlegalstandingtoadults.

• ItcanbeusefulforthemtomakeanAdvanceCarePlantorecordtheirwishes,andthoseoftheirparents.

•Thiscanhelpinformtheirhealthandcareprofessionalsincircumstances,suchasanemergency,whenthechildoryoungpersonisunabletogiveinformedconsentforthemselvesand/ortheirparent(s)ornextofkincannotbecontacted.


Return to narrative

Appendix







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Appendix


Foreword

Note on terms used

Summary

Domains






NationalVoicesisthenationalcoalitionofhealthandsocialcarecharitiesinEngland.Weworktogethertostrengthenthevoiceofpatients,serviceusers,carers,theirfamiliesandthevoluntaryorganisationsthatworkforthem.

Wehavemorethan160memberswith140charitymembersand20professionalandassociatemembers.Ourbroadmembershipcoversadiverserangeofhealthconditionsandcommunitiesandconnectswiththeexperiencesofmillionsofpeople.

www.nationalvoices.org.uk

@NVTweeting

TheNationalCouncilforPalliativeCare(NCPC)istheumbrellacharityforallthoseinvolvedinpalliative,endoflifeandhospicecareinEngland,WalesandNorthernIreland.Webelievethateveryoneapproachingtheendoflifehastherighttothehighestqualitycareandsupport,wherevertheylive,andwhatevertheircondition.Weworkwithgovernment,healthandsocialcarestaffandpeoplewithpersonalexperiencetoimproveendoflifecareforall.

www.ncpc.org.uk

@NCPC_tweets

NCPCleadstheDyingMattersCoalitionwhichaimstoraisepublicawarenessabouttheimportanceoftalkingmoreopenlyaboutdying,deathandbereavementandofmakingyourendoflifewishesknown.

www.dyingmatters.org

@DyingMatters

Published March 2015. National Voices registered charity no. 1057711

http://www.nationalvoices.org.uk

http://www.ncpc.org.uk

http://www.nationalvoices.org.uk

http://www.ncpc.org.uk

https://twitter.com/NVTweeting

https://twitter.com/NCPC_tweets

http://www.dyingmatters.org

https://twitter.com/DyingMatters

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Every Moment Counts - National Voices · A narrative for person centred coordinated care for people near the end of life Every Moment Counts