every moment counts - north west clinical senates...that happens. this is an intensely personal...
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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
3
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
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
4
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
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
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
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
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
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 me
I have responsive, timely support day and night
7
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)
About this narrative
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
The people who are important to me are at the centre of my support
My physical, emotional, spiritual and practical needs are me
I have responsive, timely support day and night
8
Appendix
• Icancontinuetoachieveleisureorwork-relatedgoalsthatareimportanttome,foraslongaspossible.
• Icanmaintainmysocialcontacts.
• Iamsupportedtomanagemysymptomsandconditionsassuccessfullyaspossible.
• Iamabletoliveasactivelyandindependentlyaspossibleatallstagesofmycareandtreatment.
• Ihavetimetosaygoodbyesandtodothingswhichareimportanttome.
•Mypreferenceformyplacetobecaredforandtodieisrespected.
• IamsupportedasmuchaspossibletostaywhereIwanttobe.
We work for my goals and the quality of my life and death (ii)
About this narrative
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
The people who are important to me are at the centre of my support
My physical, emotional, spiritual and practical needs are me
I have responsive, timely support day and night
9
Appendix
• Ihavetimelyandhonestconversationswiththoseengagedinmycare,supportandtreatment.
• Iamconfidentthatstaffandprofessionalsareabletohavedifficultconversationswithme,inorderforustodecidethebesttreatment,careandsupporttogether.
•TheprofessionalsImeetcheckthattheseconversationsarehappeningandenterthemonmyrecord.
• Icanexpecttheseconversationstobefollowedup,andrevisitedatkeytimesduringthecourseofmycareandtreatment.
• Iandmycarer(s)arealwaysgivenanexplanationoftermsthatarenewtous,like‘palliative’.
I have honest discussions and the chance to plan (i)
About this narrative
Foreword
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 planThe people who are important to me are at the centre of my support
My physical, emotional, spiritual and practical needs are me
I have responsive, timely support day and night
10
Appendix
• Iandthepeoplewhoareimportanttome,includingmycarer(s),areinformedaboutandunderstandouroptionsinrelationto:
– theillnessanditsuncertainties
– therisk,likelihoodandunpredictabilityofdying
– whatwillhappeninthefuture.
I have honest discussions and the chance to plan (ii)
About this narrative
Foreword
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 planThe 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
11
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)
About this narrative
Foreword
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 planThe people who are important to me are at the centre of my support
My physical, emotional, spiritual and practical needs are me
I have responsive, timely support day and night
12
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)
About this narrative
Foreword
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 me
I have responsive, timely support day and night
13
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)
About this narrative
Foreword
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 me
I have responsive, timely support day and night
14
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)
About this narrative
Foreword
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 me
I have responsive, timely support day and night
15
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)
About this narrative
Foreword
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
16
Appendix
•WhereverIamcaredfor,Iamhelpedtofeel
– safe
– incontrolofmypain
– comfortableanddignified,
– withaslittlefearaspossible.
•Thereissomeoneathandtohelpwithmyworriesandfears,orthoseofthepeoplewhoareimportanttome.
My physical, emotional, spiritual and practical needs are met (ii)
About this narrative
Foreword
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
17
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)
About this narrative
Foreword
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 me
I have responsive, timely support day and night
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)
About this narrative
Foreword
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 me
I have responsive, timely support day and night
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.
1. Advance Decisions
Return to narrative
Appendix
1. Advance Decisions2. 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
21
•AnAdvanceStatement(alsocalledaStatementofWishes)isageneralstatementofwhatIwantandwhatisimportanttome.
• ItiswrittendownandcontainsinformationIfeelitisimportantforotherstoknow,suchasmyfoodpreferences,religiousbeliefsordailyroutine.
• ItwillhelppeopleinvolvedinmycaretounderstandwhatIwantandwhatisimportanttomeifIcannotspeakormakedecisionsformyself.
• ItisnotlegallybindinglikeanAdvanceDecisionis,butitshouldbetakenintoaccountbyhealthandcareprofessionalswhendecidingwhatisinmybestinterests.
2. Advance Statements
Return to narrative
Appendix
1. Advance Decisions
2. Advance Statements3. Advance Care Plans
4. Lasting Power of Attorney – two kinds
5. Donating my organs and/or my body
6. For children and young people
22
•AdvanceCarePlanswillnormallybemadeinpartnershipwithmyhealthteamwhenIentertheend-of-lifephase.
•AnAdvanceCarePlanisusedtorecordmycareandtreatmentwishes.Itshouldbeattachedtomymedicalnotesandeasilyaccessibletothoseinvolvedinmycare.
•ForexampletheplancouldsetoutwhereIwanttoreceivecare,whereIwanttodie,whoIwanttobewithme,andmyreligiousorspiritualpreferences.
•Themostcommontypeofend-of-lifecareplanisaPreferredPrioritiesforCare(PPC)document.IfIhavemadeanAdvanceDecision,AdvanceStatementorLastingPowerofAttorneythisshouldbenotedinmyAdvanceCarePlan.
•MyAdvanceCarePlanisnotlegallybinding.Butithelpspeopleinvolvedinmycaretoknowwhatisimportanttome.Doctorswilltrytofollowmywishesandtaketheplanintoaccountwhendecidingwhatisinmybestinterests.
3. Advance Care Plans
Return to narrative
Appendix
1. Advance Decisions
2. Advance Statements
3. Advance Care Plans4. Lasting Power of Attorney – two kinds
5. Donating my organs and/or my body
6. For children and young people
23
•Thesegivelegalpowertoanotherpersonorpersonstomakedecisionsonmybehalf.Icanchoosetouseoneorbothkinds.EachkindinvolvesaseparateapplicationtotheOfficeofthePublicGuardianandregistrationfee.
•Ahealthandwelfarelastingpowerofattorneyallowsmetochooseonepersonormoretomakedecisionsaboutthingslike:mydailyroutine(suchaseatingandwhattowear);medicalcare;whereIamcaredfor;treatmentsthatkeepmealive.ThesepowerswillonlybeusedwhenIamnotcapableofmakingmyowndecisions.
•Apropertyandfinancialaffairslastingpowerofattorneyallowsmetochooseonepersonormoretomakedecisionsaboutthingslikecollectingbenefits,payingbillsorsellingproperty.IfIgivethempermissiontheycanstartusingthispowerstraightaway.
4. Lasting Power of Attorney – two kinds
Return to narrative
Appendix
1. Advance Decisions
2. Advance Statements
3. Advance Care Plans
4. Lasting Power of Attorney – two kinds5. Donating my organs and/or my body
6. For children and young people
24
• Ihavetherighttodecidewhatmayhappentomybodyaftermydeath.
• IfIwishmyorganstobeusedfordonationtootherpeople,Ineedtoletpeopleclosetomeknow,andregistermyselfontheNHSOrganDonationRegister.
• Icanhavethechoiceofwhichorganstodonate.
• IfIwishtodonatemybodyforthetrainingofmedicalprofessionalsIneedtomakedirectcontactwiththemedicalschoolIwishtodonateto.
• IcanobtainalistfromtheHumanTissueAuthority.
5. Donating my organs and/or my body
Return to narrative
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 body6. For children and young people
25
•Childrenandyoungpeopleundertheageof18yearswhoarenearingtheendoflifehaveadifferentlegalstandingtoadults.
• ItcanbeusefulforthemtomakeanAdvanceCarePlantorecordtheirwishes,andthoseoftheirparents.
•Thiscanhelpinformtheirhealthandcareprofessionalsincircumstances,suchasanemergency,whenthechildoryoungpersonisunabletogiveinformedconsentforthemselvesand/ortheirparent(s)ornextofkincannotbecontacted.
6. For children and young people
Return to narrative
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
26
Appendix
About this narrative
Foreword
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
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
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