end of life - milton keynes the facts.… · foreword / end of life – the facts 6 macmillan...

End of LifE:The FacTs

a booklet for people in the final stages of life, and their carers

MacMillancancerSupport/Mariecuriecancercare5

endoflife–thefactS/forewordendoflife:thefactS/foreword


forEwordKnowing what to expect when someone nears the end of

life is vitally important – both for the person who’s ill and

for their family and friends. Nothing can heal deep feelings

of pain and loss. But having information can help us to

prepare for the physical and emotional changes that we

might be experiencing.

iknowfrompersonalexperienceitcanbeatimeofgreat

uncertaintyandstress–muchofwhichcanbeavoidedby

simplyknowingwhat’sgoingonandhowandwhythings

maychange.

thisbookletfromMariecuriecancercareandMacmillan

cancerSupportaimstofillthatinformationgap.

it’scalledEnd of Life: The Factsandprovidesapractical

guidetothewiderangeofsituationsandissueswhichface

manypatientsandcarers,particularlythosemakingthe

choicetostayathome.

endoflifecareisasensitivesubject,butibelievethereisa

tremendousvalueinfeelingfullyinformedandinvolvedin

makingdecisions–bigandsmall.

Esther Rantzen

foreword/endoflife–thefactS

6 MacMillancancerSupport/Mariecuriecancercare7

endoflife:thefactS/contentS

contEnts1 Issues to consider 9

Questionstoask

2 Being looked after at home 15

whocanhelpifyouarelookedafterathome

wheretogettheequipmentyouneed

wheretogetfinancialsupport

otherplaceswhereyoucanbelookedafter

3 The last few weeks of life 29

emotionalandmindchanges

copingwithphysicalchangesandsymptoms

complementarytherapies

lastingpowerofattorney,advancedecisions

andadvancestatements

4 The last few days of life 51

physicalcare

Symptoms

5 Nearing death 59

whathappens

Mindchanges

physicalchanges

finalmomentsoflife

6 After the death 65

whatyourGpwilldo

whatyourfuneraldirectorwilldo

registeringthedeath

howgriefmightaffectyou

7 National organisations that can help 75

foreword/endoflife–thefactS


endoflife:thefactS/aboutendoflife:thefactS

About End of LifE: ThE facTsIt can be very upsetting and shocking to be told that your

illness cannot be cured, and you may need help and support

to cope with this news.

thisbookletexplainswhathappensattheendoflifeand

howtoplanforit.itgivesinformationforpeoplewhowould

liketobelookedafterathomeduringthefinalstagesoftheir

life.Yourrelativesandclosefriendsmayalsoneedsupport

andadvice,sosomeofthisinformationhasbeenwritten

forthem.

bothyouandyourcarerscanreadthisbooklet.itmayhelp

youtodiscusstheinformationtogetherafteryou’vereadit.

Youmayfinditdifficulttoreadthebookletallatonce,soyou

mayprefertodipintodifferentsectionswhenyoufeelable

todoso.wehaveincludedausefullistofissuestoconsider

atthebeginning.

Manysupportservicescanhelpyoucopeatwhatmay

beadifficulttime.wehavelistedtheirdetailsattheend

ofthebooklet.

8

endoflife:thefactS/iSSueStoconSider

MacMillancancerSupport/Mariecuriecancercare11 10

cHAPtEr 1

issuEs to considEr This chapter is about some of the issues you may want to

consider. We’ve listed some questions to help you and your

carers think about how you’d like to be cared for.

Youcandiscussthesewithyourhealthcareprofessionals

sothat,whereverpossible,theycanhelpcareforyouinthe

wayandplaceyou’dlike.

You can discuss

the questions

with your

healthcare

professionals.

MacMillancancerSupport/Mariecuriecancercare13 12 MacMillancancerSupport/Mariecuriecancercare

endoflife:thefactS/iSSueStoconSideriSSueStoconSider/endoflife:thefactS

QuEstions to Ask

These questions are just suggestions, so you might want

to ignore any that you don’t feel are relevant to you.

We hope the information in this booklet will also help to

answer some of your questions.

itcanbedauntingtothinkabouttheseissues,soyoumay

liketogethelpfromarelative,closefriendorasupport

organisation(seepage75).Yourhealthcareprofessionals

canalsosupportyou.

Macmillanhasabooklet,Coping with advanced cancer,

whichyoumayalsofinduseful.Youcanorderacopyby

calling0808 808 00 00orgoingtobe.macmillan.org.uk

information

• whatinformationdoyouneedaboutyourillnesstohelp

youunderstandwhatmayhappentoyou?

being at home

• doyouneedtothinkaboutsleepinginadifferent

roomathometomakeiteasierforyou:forexamplein

aroomdownstairs?

• ishomestillthebestplaceforyoutobe?

• Mightitbebetterforyoutobecaredforelsewhere:

forexampleinafamilymember’sorfriend’shouseorin

ahospice,hospitalornursinghome?

Who do you

want to have

around you?

You may like

to get help from

a relative,

close friend

or support

organisation.

People and surroundings

• howwouldyoulikeyoursurroundingstobeas

youaredying?

• howdoyouwanttobetreatedbyyourrelativesand

closefriendswhenyouaredying?

• whodoyouwanttohavearoundyou?

• aretherepeopleyoudon’twanttoseeordon’tfeel

wellenoughtosee?

• arethereanyissuesyou’dliketosortoutwith

particularpeople?

• isthereanythingyouwantdoneforthepeopleyoulove?

• isthereanythingyouwantdoneforanypets?

• wouldyoulikeadoctorornursetospeaktoyouoryour

relativesorclosefriendsaboutanyparticularissues?

• doyoufeelthatyouoryourrelativesorclosefriends

wouldbenefitfromsupportorcounselling?


endoflife:thefactS/iSSueStoconSideriSSueStoconSider/endoflife:thefactS

sorting things out

• isthereanythingthatyouwanttodobeforeyou

gettooill?

• haveyoumadeawill?

• doyouwishtocreatealastingpowerofattorney?

(seepage44)

• arethereanyspiritualorreligiouspracticesthatyou’d

liketobecarriedout?whodoyouneedtoasktomake

surethishappens?

• arethereparticularpracticesyou’dliketohavecarried

outatthetimeofyourdeath?

• doyouwantyourbodytobetreatedinaparticularway

onceyouhavedied?

• whatfuneralarrangementswouldyouliketobemade?

• doyouwanttobeburiedorcremated?

• ifyouchoosetobecremated,wherewouldyoulikeyour

ashestobescattered?

decisions about treatments

• arethereparticulartreatmentsyoudon’twanttohave?

• doyouwanttowriteanadvancedecisiontorefuse

treatment(alsoknownasanadvancedirectiveorliving

will)?–seepage46.

if you are a carer

• howcanyoutakecareofyourself?

• whatdoyouneedtobeabletolookafteryour

relativeorclosefriend?

• canyougethelpwithhousework,shoppingandcooking

sothatyouhavemoreenergytobeacarer?

What do you

need to be able

to look after

your relative or

close friend?

Is there anything

that you want to

do before you get

too ill?

endoflife:thefactS/beinGlookedafterathoMe


cHAPtEr 2

bEing LookEd AftEr At HomE Many people want to die at home, in their own bed,

surrounded by their close family and friends. If you want to

be at home, then help and support is available for you and

your carers.

althoughdyingisanaturalprocess,fewpeoplehave

experienceoflookingaftersomeonewhoisdying.ifyouare

acarer,thethoughtoflookingaftersomeoneyoucareforor

areclosetoathomecanbefrightening.however,itcanalso

beoneofthemostrewardingexperiencesyoucanhave,and

atimeofgreatcloseness.

thischaptergivesyouinformationabout:

• whocanhelpifyouarelookedafterathome

• wheretogettheequipmentyouneed

• wheretogetfinancialsupport

• otherplacesyoucanbelookedafter

Looking after

someone you are

close to can be a

time of great

closeness.


endoflife:thefactS/beinGlookedafterathoMebeinGlookedafterathoMe/endoflife:thefactS

wHo cAn HELP if you ArE LookEd AftEr At HomE

it’simportantthatyouandyourcarershaveasmuchsupport

aspossible.caringcanbehardwork,bothphysicallyand

emotionally.it’snotalwayseasytoaskforhelp,asweoften

feelweshouldtrytocopealone.however,therearemany

healthcareprofessionalswhocanhelpyouandyourcarers.

carersmayfindMacmillan’sbookletCaring for someone with

advanced cancerhelpful.Youcanorderacopybycalling

0808 808 00 00orgoingtobe.macmillan.org.uk

your gPwhileyouareathome,yourGphasoverallresponsibilityfor

yourcare.theycanhelpyouindifferentways,forexampleif:

• you’reworriedaboutanychangesinyoursymptoms,

theycanarrangetoseeyoueitherinthesurgeryorat

home–whentheyassessyou,they’lldiscussoptionsfor

treatingandcontrollingyoursymptoms

• youwanttotalkthroughwhatmayhappenasyou

becomelesswell

• youwanttomakeaplanfordealingwithemergencies

(althoughthisisn’toftenneeded)sothatyougetthe

careyouwant

• youneednursingcare–theycanarrangeforyoutobe

seenbyadistrictnursewhowillhelptoorganisethisfor

youathome

• youneedspecialistcarefromapalliativecareteam

(seepage18),theycanarrangeforyoutobeseenat

homebyaspecialistpalliativecarenurse.

It’s important

that you and your

carers have as

much support

as possible.

district nurses districtnursesworkcloselywithGpsandpalliativecare

nurses.theymakevisitstopatientsandtheircarersathome

andcanprovidehelpwith:

• givingdrugsandinjections,changingdressings,giving

adviceonpressureareacareandtoiletproblems,such

asincontinenceandconstipation–theywillarrange

visitsasneededandwillletyouknowabouttheservices

theyprovide

• showingyourrelativeshowtomoveyouandtakecareof

yourpersonalneeds

• coordinatingyourcareandcontactingotherhealthor

socialservicestohelplookafteryouiftheyareneeded.

districtnursesoftenworkwithpalliativecarenursestohelp

supportyouandyourcarerssothatyoucanremainathome.

theymaybeabletoarrangeanursingassistant(alsocalleda

healthcareassistant)tohelpwithtaskssuchaswashingand

personalcare.

nurses who specialise in a specific diseasenurseswhospecialiseincaringforpeoplewithspecific

diseasesorconditions,forexampleheartfailure,renal

diseaseormotorneuronedisease(Mnd),areknownas

clinicalnursespecialists(orcnSs).theyworkinpartnership

withyourdistrictnurses,hospitalorcommunityteam.

District nurses

may be able to

arrange help with

tasks such as

washing and

personal care.


beinGlookedafterathoMe/endoflife:thefactS endoflife:thefactS/beinGlookedafterathoMe

marie curie nursing servicetheMariecurienursingServiceprovidesateamofnurses

acrosstheukthatofferpracticalnursinghelptopeoplewith

cancerorotherillnesseswhoarenearingtheendoftheirlife.

Mariecurienursescanstayinyourhomeovernight,orfor

partoftheday,sothatyourcarerscangetagoodnight’s

sleep,orabreakduringtheday.

Mariecurienursingcareisfreeandyourdistrictnursewill

usuallyarrangeitforyou.

Hospital or community palliative care teamspalliativecareteamsprovidecarewhichisspecifically

aimedatimprovingthequalityoflifeofpeopleandtheir

carerswhoarecopingwithlifelimitingprogressiveillnesses,

suchascancer.

hospitalpalliativecareteamsareusuallybasedinahospital,

andcommunitypalliativecareteamsarebasedinthe

community.hospitalpalliativecareteamscanvisityou

ifyou’reaninpatientorifyou’reattendingaclinic

appointment.communitypalliativecareteamsareoften

linkedtoahospiceandcanvisityouathome.allpalliative

careteamscangiveyouadviceonpaincontrol,coping

withothersymptoms,emotionalsupportandadviceon

practicalproblems.

palliativecareteamsincludespecialistpalliativecarenurses

anddoctors.Manyteamsalsohave,orworkcloselywith,

asocialworker,counsellor,occupationaltherapist,

physiotherapistandaspiritualcarecoordinatororchaplain.

Marie Curie

nurses can stay

in your home

overnight, or for

part of the day.

Specialist palliative care nursesareexperiencedinassessing

andtreatingyoursymptomsandalsoprovidecounselling

andemotionalsupportforyouandyourcarers.Most

specialistpalliativecarenursesworkcloselywithawider

hospitalorcommunitypalliativecareteam,whichincludes

doctorsandotherhealthcareprofessionals.

Specialistpalliativecarenursesaresometimesreferredtoas

Macmillan nurses.howevermanyMacmillanprofessionalsare

nurseswhohavespecialistknowledgeinaparticulartypeof

cancer.Youmayseethemwhenyou’reatclinicorinhospital.

Doctorsspecialisinginpalliativemedicinegiveexpert

medicaladviceonmanagingpeoplewithadvanceddisease.

theyworkcloselywithpalliativecarenursesandmayvisit

peopleathomeifneeded.

NursesSomecommunitypalliativecareteamshavenurses

whocanvisityouathomeandprovidepracticalcaresuchas

washing,dressingandgivingdrugs.aspecialistpalliative

carenursewillusuallyarrangecarefromthesenurses.

Physiotherapistscanhelpillpeopletomovearound.theycan

alsohelpwithpainreliefandifyouhavebreathingproblems.

Specialist

palliative care

nurses provide

counselling and

emotional

support for you

and your carers.



Social workers/care managerscanorganisehelpwith

housework,shoppingandcooking,orapersonalcare

assistanttohelpwithtaskssuchaswashinganddressing.

ifyoucanaffordit,youmaybeaskedtopaytowardsthecost

ofthishelp,butinsomecircumstancesitmaybefundedfor

you.Socialworkersorcaremanagerscanalsogiveyou

informationaboutanybenefitsyoumaybeabletoclaim,

suchasattendanceallowanceordisabilitylivingallowance

(seepage22).theymayalsobeabletoprovidemore

advancedcounsellingandemotionalsupportforyouand

yourcarers.

Occupational therapistscanvisityourhometoassesswhether

specialistequipmentwouldhelpyoumovearoundandbeable

todoasmuchforyourselfaspossible(seepage21).

Counsellorsaretrainedtohelppeopleinalltypesof

situations.Seeingacounsellorcanhelppeopleto

understandandexpresstheirfeelings,andcopebetter

withtheirsituation.

Spiritual care coordinators or chaplainsofferspiritual

careandsupport.

Yourdistrictnurse,specialistnurseorGpcantellyouhowto

accessthesehealthcareprofessionalsandaboutthespecific

typesofhelpandsupportavailableinyourarea.

Social workers or

care managers

can give you

information

about any

benefits you may

be able to claim.

wHErE to gEt tHE EQuiPmEnt you nEEd

Yourdistrictnurseoroccupationaltherapistcanorganise

equipmenttohelpyoumanageathome.

Yourdistrictnursecanarrangeforyoutohave:

• acommode,urinal,bedpansorincontinencesheets

• aspecialmattressorshapedpillows

• ahoistorsling

• aspecialbed.

Youroccupationaltherapistcansupply:

• anadjustablebed

• awheelchair,walkingframeorramp

• smallgadgets,suchastwo-handledmugsor

specialcutlery

• grab-railsforyourbath.

Youroccupationaltherapistcanalsogiveyouinformation

aboutstairlifts.

ifyouhaven’tseenanoccupationaltherapist,butneedsome

equipmentwhichtheyusuallysupply,askyourdistrictnurse,

Gporcommunitypalliativecareteamtoarrangeforoneto

visityourhome.

Manyshopsandorganisationsalsosellorhireaidsand

equipment.theredcross(seepage87)hiresoutequipment

suchascommodesandwheelchairs.Youcanalsobuyitemssuch

asincontinencepadsandurinalsfrommostlargechemists.

Your district

nurse or

occupational

therapist can

organise

equipment to

help you manage

at home.



wHErE to gEt finAnciAL suPPort

illnessnearlyalwaysinvolvesunexpectedexpensesand

thiscancauseextraworryatatimewhenyouleastneed

it.helpisavailablefromanumberofsourcesandcan

sometimesbeaccessedatshortnotice.

benefitsifyou’dliketofindoutmoreaboutanybenefitsyoumaybe

entitledto,thebenefitsagencyhastwobooklets(ib1and

Sd1),whichoutlinesocialsecuritybenefits.Youcangetacopy

fromyourlocalcitizensadvicebureauwherestaffcanadvise

youaboutthebenefitsyoucanclaim.Youcanfindtheir

contactdetailsinthephonebookandyou’llusuallyneedto

makeanappointment.Youcanalsogetinformationfromthe

benefitenquirylineonfreephone 0800 882200orthe

departmentforworkandpensionswebsiteatdwp.gov.uk

Youmayqualifyfordisabilitylivingallowanceifyouare

under65orforattendanceallowanceifyouare65andover.

Yourlocalsocialsecurityofficecansendyouclaimforms.

thereisafast-trackclaimforpeoplewhomaynotlivelonger

thansixmonths.peopleclaimingunderthis‘specialrule’

needtogettheirdoctortocompleteaformforeither

benefit.Yourdistrictnurseorpalliativecarenursespecialist

cantellyoumoreaboutthese,andwhetheryoucanapply

forthem.

Financial help

is available from

a number of

sources and can

sometimes be

accessed at

short notice.

direct payments ifyou’vebeenassessedasneedingsocial

services,suchashelpwithpracticalcareathome,youmay

beentitledtogetdirectpaymentsfromyourlocalauthority.

thismeansthatyou’regivenpaymentstoorganisesocial

servicesyourself,ratherthanlocalsocialservicesorganising

andpayingforthemforyou.Youcangetinformationabout

directpaymentsfromthedepartmentofhealthwebsiteat

dh.gov.ukorfromyourlocalauthority.

other financial helpYoumayalsobeabletoclaimgrantsfromother

organisationsorcharities.MacmillancancerSupportgives

grantsandbenefitsadvicetopeoplewithcancer–callthe

MacmillanSupportlineon0808 808 00 00.Youcanalso

orderthebookletHelp with the cost of cancerat

be.macmillan.org.ukorbycalling0808 808 00 00.

Yourunionorprofessionalorganisation,ifyoubelongtoone,

maybeabletogiveyoufinancialhelporadvice.forexample,

actors,bankemployees,doctors,musicians,nurses,printers,

socialworkers,membersofthearmedforcesandteachers

allhavespecialfundswhichhelpwithcashgrantsand

sometimesholidays.detailsarelistedinA Guide to Grants

for Individuals in Need,whichisavailableinpubliclibraries

(seepage90).italsogivesdetailsofalltrustsand

organisationsthatprovidefinancialsupport.

You may be

entitled to get

direct payments

from your local

authority.

26 MacMillancancerSupport/Mariecuriecancercare MacMillancancerSupport/Mariecuriecancercare27


peoplewhohavebeentoldtheircancercan’tbecuredand

whoneedtogainsomemoneyquicklymaybenefitfroma

viaticalsettlement.thismeansthatanindependentfinancial

companybuysanexistinglifeinsuranceorendowment

policyfromaterminallyillperson.caremustbetakenbefore

sellinganinsurancepolicy,andwerecommendthatyou

alwaysseekadvicefromanindependentfinancialadviser.

Prescriptionsinengland,peoplewithcancercangetfreeprescriptions.

ifyouareundergoingtreatmentforcancerandtheeffectsof

cancertreatment,youcanapplyforanexemptioncertificate

bycollectingafp92aformfromyourGpsurgeryor

oncologyclinic.prescriptionsinwalesandnorthernireland

arealsofreeandtheywillbefreeinScotlandby2011.

inmanyareasofthecountryyoucanarrangeforyourGp

oralocalpharmacisttocollectanddeliveryourrepeat

prescriptionstoyourhome.

In England,

people with

cancer can

get free

prescriptions.

otHEr PLAcEs wHErE you cAn bE LookEd AftEr

althoughyourwishmaybetodieathome,theremaybea

timewhenthischanges.Youmaydecidethatyou’dbemore

comfortableinhospitalorinahospice,wheretrainedstaff

canhelpyourcarerslookafteryou,andrelievepainand

othersymptomsifneeded.

ifyou’reacarer,it’simportantthatyoudon’tfeelguiltyifyou

encouragethepersonyou’recaringfortodieinahospice,

hospitalornursinghome.ifyouhavetomakethisdecisionto

movethematalatestage,thisshouldn’tbeseenasafailure,

butratherbecauseyouwanttomakesurethatyourloved

onegetstheexpertcaretheyneed.

Hospital or hospiceifyoudecidetogointohospitalorahospice,youandyour

carersmayfeelanxiousthatyoumightnotbeabletocome

homeagain.however,it’squiteusualforsomeonetogointo

hospitalorahospiceforashorttime,sothatsymptomscan

becloselymonitoredandbroughtundercontrol.then,ifyou

andyourfamilywish,youcanreturnhome.

Although your

wish may be to

die at home,

there may be

a time when

this changes.



hospicesspecialiseincontrollingpainandothersymptoms.

theyaresmallerandquieterthanhospitals,andoftenworkata

muchgentlerpace.Manyhavesittingrooms,acoffeeshopand

accommodationforrelativesorclosefriends.

accommodationandcareinahospiceisalwaysfreeofcharge.

Sometimesthere’sawaitinglist,buturgentadmissionscan

oftenbeorganisedwithinacoupleofdays.Manyhospicesalso

havedaycentresforpeoplelivingathome.

ifyou’renotsureabouttheideaofhospitalorhospicecare,

youcanasktovisitthehospitalorhospicebeforemakinga

decision.Youcanthendiscussanyconcernswiththestaff.

ifyoudecidethatyou’dliketobecaredforinahospicewhen

youreachthefinalstagesofyourlife,yourGporspecialist

palliativecarenursecanarrangethis.

Nursing homes

are another place

where you can be

cared for, either

for a short time

or longer-term.

nursing homesnursinghomesareanotherplacewhereyoucanbecaredfor

eitherforashorttimeorlonger-term.YourGp,districtnurse,

palliativecareteamorsocialworkercanarrangethisforyou.

availabilityofcarevariesfromoneareatoanotherandmay

takesometimetoorganise.privatenursinghomescharge

feesfortheirservices,butyoumaybeentitledtonhS-

fundednursingcareortofully-fundedcontinuinghealthcare.

ateamofhealthandsocialcareprofessionalscancarryout

anassessmenttodecidewhetheryou’reentitledtofunding.

it’sagoodideatogetinformationandadvicefromasocial

worker.Youcangetalistanddetailsoflocalregisteredcare

homesandnursinghomesfromyourlocalsocialservices

departmentoryourareahealthauthority.Youcanget

informationaboutfindinganursinghome,andalltheissues

toconsideronthenursinghomefeesagency(nhfa)’s

websitenhfa.co.ukorthroughthenhfacareadviceline

on 0800 99 88 33.

Hospices are

smaller and

quieter than

hospitals and

often work

at a much

gentler pace.


endoflife:thefactS/thelaStfewweekSoflife

30

cHAPtEr 3

tHE LAst fEw wEEks of LifE During the last few weeks of life, you may experience a

number of emotional and physical changes and symptoms.

We have outlined these here, together with ways of dealing

with them.

althoughthesechangesandsymptomsarenormalfor

someoneinthelastfewweeksoftheirlife,theycanbe

upsettingforbothyouandthepeoplearoundyou.

beingpreparedforwhatmayhappencanmakethesituation

alittleeasiertocopewith.ifyou’dlikesupportasyouread

thischapter,orifyou’dliketotalkthroughtheseissuesin

moredetail,youcancontactoneofthehealthcare

professionalslookingafteryouoroneoftheorganisations

listedonpages75–89.YoucouldalsocalledtheMacmillan

Supportlineon0808 808 00 00.


• emotionalandmindchanges

• copingwithphysicalchangesandsymptoms

• complementarytherapies

• advanceddecisionstorefusetreatmentand

advancedstatements

wehaveincludedinformationforrelativesandfriends

onpage49.

Being prepared

for what may

happen can make

the situation a

little easier to

cope with.

EmotionAL And mind cHAngEs

aspeoplegointothelastfewweeksoftheirlifetheyoften

havealotofdifferentemotions.thesecanincludeworry,

anxiety,panic,anger,resentment,sadnessanddepression.

theirfeelingsandemotionsmaychangeveryquickly.

it’snaturaltobeworriedoranxiouswhenyou’refacingdeath

anditcanhelptotalkaboutthiswithyourcarers.Youmay

alsofeelthelossofyourhealthandworryaboutthelossof

yourroleinyourfamilyorwithfriends.Sometimesit’svery

difficulttotalktothepeopleclosetoyouandyoumaywant

totalktosomeoneoutsideofyoursituation.

ifyouhaveaspecialistnurse,theycantalktoyouaboutyour

feelings.thiscanhelpyouunderstandanddealwithyour

situation.Somepeopleprefertotalktoapersontheydon’t

know,suchastrainedcounsellor.ifyou’dliketoseeatrained

counsellor,yourGpcanreferyou.Manysupport

organisations(seepages75–89)canalsohelpandsome

havehelplinesyoucancall.talkingtoareligiousorspiritual

advisercanalsohelptoreduceyourfearandanxiety,evenif

you’venotattendedreligiousservicesorhadcontactwith

spiritualleadersinthepast.

Manypeoplebecomewithdrawn.forsomepeoplethismay

beduetodepressionandyourdoctorornursecansuggest

waysofdealingwiththis.however,asyoubecomemoreill

it’scommontofeelthatyouarelosinginterestinthethings

andthepeoplearoundyou,evenclosefamily.thisisanatural

partofgraduallywithdrawingfromtheworld.


endoflife:thefactS/thelaStfewweekSoflifethelaStfewweekSoflife/endoflife:thefactS

Sometimes it’s

very difficult to

talk to the people

close to you and

you may want to

talk to someone

outside of

your situation.

ifyouareacarer,itmaybeupsettingifyourrelativeorfriend

seemsuninterestedinyou.itmayfeelasthoughtheyare

givingupwhenyouwantthemtostayalive.however,

withdrawalisanaturalaspectofdying.theymayseem

angryorveryanxiousandit’simportanttoreallylistento

whatthey’resayingandacknowledgetheirfeelings.

althoughitmaynotfeelasthoughyou’redoingmuch,

justbeingthereandlisteningcanbeverysupportive.

coPing witH PHysicAL cHAngEs And symPtoms

thephysicalchangesandsymptomsthatoccurvarywith

thetypeofillnessapersonhas.here,wedescribephysical

changesthatgenerallyhappeninthelastfewweeksoflife

andthespecificchangesthatmayoccurwithsometypes

ofcancer.

assomeonebecomesmoreill,theirmedicinesmaybe

reviewedbytheirdoctororspecialistnurse,andsomemay

bestoppediftheyarenolongerneeded.ifsomeonehas

symptomssuchaspain,feelingsickorbreathlessness,

thedoctororspecialistnursemayprescribenewmedicines

tocontrolthem.Medicinescanbechangedandtailoredto

whatisneeded.complementarytherapiesmayimprove

qualityoflifeandwell-being,andcanalsosometimeshelpto

reducesymptoms(seepage43).

Although it may

not feel as

though you’re

doing much, just

being there and

listening can be

very supportive.



tiredness and lack of energyit’susualtograduallyloseenergyandnotbeabletodo

thingsforyourself.tirednessandweaknesscanmakeit

harderforyoutoconcentrateortakepartfullyinwhatis

goingonaroundyou.ifyoufeeltired,it’simportanttopace

yourselfandsaveyourenergyforthethingswhichmatterto

youandwhichyouenjoy.Justdoasmuchasyoufeellike.

Youmayneedtorestalotduringtheday,eitherinachairor

inbed.ifyou’renotmovingaroundmuchyoumaygetsore

areas,forexampleonyourbottomorheels.Yourdistrict

nursecanorganiseequipment,suchasapressure-relieving

cushionforyourchairoramattressforyourbed,toprevent

soreness.Youcanalsohelpbychangingyourpositionas

oftenasyoucan.

sleep disturbanceSomepeoplefindtheycan’tsleepwellatnight.thiscanbe

particularlyhardtocopewithifitcontinues.theremaybe

manyreasonswhysleepingatnightcanbedifficult.

theseinclude:

• somedrugs,suchassteroids,whichcankeep

youawake

• psychologicalfactors,suchasanxietyanddepression,

orperhapsafearofdyinginthenight

• symptomswhicharenotcontrolled,suchaspain,

breathlessnessorincontinence

• otherfactors,suchaslight,noiseandsleeping

duringtheday.

If you feel tired,

it’s important to

pace yourself.

it’simportanttotellyourdoctorornurseifyou’renotsleeping

well.oncethecausesofyoursleeplessnessareknown,your

sleepcanoftenbeimproved.letyourdoctorornurseknow

ifyouhaveanyspecificanxietiesorsymptoms,suchaspain,

breathlessnessorincontinence,thatareaffectingyoursleep.

forexample,ifpainiscausingsleeplessnessthiscanbe

controlledbyadjustingyourdoseofpainkillersatnighttime–

yourspecialistnursecanadviseyouaboutthis.

herearesomesimplewaystohelpyousleep:

• ifyourmattressisuncomfortable,askyournursefor

adviceonamorecomfortableone.

• trytoreducelightandnoiseatnight.

• haveahotdrinkbeforegoingtobed,butavoidcaffeine

andalcoholatnighttime.

• keepyourbedroomforsleeping.ifyouwakeduringthe

night,gotoanotherroominthehouse.ifyouneedto

sleepduringtheday,gotoyourbedandsleep.

• ifyouwakeatnight,don’ttossandturn.Getupandgo

toanotherroom.haveahotdrinkifyoulike.whenyou

feelsleepy,gobacktobedagain.

• avoidusinganyscreen,suchasatVscreenorcomputer

screen,foronehourbeforegoingtobed.

• keepa‘worry’booksothatifyouwakeatnight

youcanwritedownthethingsyouareworriedabout.

Youcanthenworkthroughyourlistofworriesduring

thedayandgetsupportandadvicefromyourcarersor

yourdoctorornurse.

• tryusingrelaxationtechniquesatnight–youmayfind

ithelpfultousearelaxationtapeorlistentosome

soothingmusic.

• ifyoufindtouchandmassagehelpful,youcouldask

yourcarertogiveyourhandsorfeetagentlemassage.

Tell your doctor

or nurse if you’re

not sleeping well.



Painnoteveryonegetspain,butifyoudoitcanbereassuringto

knowthereareeffectivewaysofcontrollingit.ifyouhave

pain,it’simportanttoletyourdoctororspecialistpalliative

carenurseknowexactlywhereyourpainis,howitfeels,

andhowitaffectsyousotheycantreatiteffectively.

Painkillerseveryonefeelspaindifferentlyandthereareseveraltypesof

painkillersfordifferenttypesofpain.theyinclude:

• simplepainkillers,suchasparacetamolandcodeine

• anti-inflammatorydrugslikeibuprofen

• painkillersfornervepain,suchasgabapentin,

pregabalinandamitriptyline

• strongpainkillers,suchasmorphine,oxycodone,

fentanylanddiamorphine.

painkillersareusuallygivenastablets,liquidmedicines,

orpatchesstucktotheskin.ifyouareunabletoswallowor

arebeingsick,yournurseordoctorcangiveyoupainkillers

suchasmorphine,diamorphineandoxycodoneasan

injectionorbyusingasyringe driver(seenextpage).

Not everyone

gets pain, but if

you do there are

effective ways of

controlling it.

syringe driverthisisasmallportablepumpsetupbyyournurse

ordoctor.

asyringecontainingenoughdrug(s)*for24hoursis

attachedtothepump.thepumpdeliversacontinuous

doseofthedrug(s)fromthesyringethroughasmall

needleortubethatisinsertedjustundertheskinofyour

tummy(abdomen)orarm.Yournurseswillchangethe

syringeeachdayorwhenneeded.

*painkillers,anti-sickness,anti-anxietyandseveralothermedicinescanbe

givenbyasyringedriver.

Manypeopleworrythattheirpainwillworsenastheynear

theendoftheirlifeandthey’llneedtotakeincreasingdoses

ofstrongpainkillerssuchasmorphine.it’simportantto

rememberthatthere’snosuchthingasa‘rightdose’of

morphine.the‘right’doseisthedosethatgetsridof

yourpain.

side effects of painkillers painkillerscontainingcodeineandstrongpainkillershave

threecommonsideeffects:drowsiness,sicknessand

constipation.drowsinessusuallywearsoffafterafewdays,

soyoushouldbepain-freeandstillalertenoughtodoallthat

youwanttodo.ifyoufeelsick,anti-sicknessmedicinescan

help,andthisusuallysettlesgraduallyoverafewdays.

constipationissuchacommonsideeffectthateveryone

takingstrongpainkillersusuallyneedstotakealaxative

regularly.Yourdoctor,nurseorpharmacistcanadviseyou

aboutthis.

The ‘right’ dose

is the dose that

gets rid of

your pain.



paincontrolorganisationscangiveyouinformationabout

painrelief(seepage88).

other ways of controlling paininadditiontopainkillers,thereareanumberofotherwaysto

controlpain.theseinclude:

• findingacomfortablepositiontositorliein

• usingwarmthorcoldontheareaofpain

• usingrelaxation

• tryingtodistractattentionfromthepain,forexampleby

playingmusicyouenjoy

• transcutaneouselectricalnerveStimulation(tenS)and

acupuncture,whicharemorespecialisedwaysof

controllingpain(yourdoctororspecialistnursewilltell

youifthesearesuitableforyou).

Youmayalsoknowofmethodsthathavehelpedyoucontrol

yourpaininthepast.

YoumayfindMacmillancancerSupport’sbooklet

Controlling cancer painuseful.Youcanorderacopyby

calling0808 808 00 00orgoingtobe.macmillan.org.uk

feeling sick and vomitingYourillness,oryourmedicines,maymakeyoufeelorbesick.

ifthishappens,yourdoctorcanprescribeanti-sickness

drugswhichusuallycontrolsicknesseffectively.thesemay

betakenastablets,butifyoucan’tswallowtablets,they

canalsobegivenassuppositorieswhichareinsertedinto

yourbackpassage,asinjectionsorbyasyringedriver

(seepage35).

You may find

Macmillan

Cancer Support’s

booklet

Controlling

cancer pain

useful.

therearevariouswaystotrytoreducesickness:

• ifyou’vebeengivenanti-sicknessmedicines,takethem

regularlytopreventthesicknessfromcomingback

• havewarmorcoldfood,asthisdoesn’tsmellasstrong

ashotfood

• eatdryfoods,suchascrackers

• havegingerasroot,tea,gingerbeerorgingerbiscuits

• sipfizzydrinks

• eatlittleandoften.

weight loss and loss of appetiteYoumayloseweightevenifyou’reeatingwellandthiscan

beupsetting.Graduallyyou’llfindthatyourappetitereduces

duetoyourillness,orthemedicinesyou’retaking.it’salso

commontobeputoffeatingbythesightandsmelloffood.

Medicines,suchassteroids,cansometimeshelptoboost

yourappetite.Smallfrequentmeals,consistingofyour

favouritefoods,arelikelytobemosttempting.Youmaybe

abletoboostyourappetiteby:

• makingyourfoodlookattractive

• havingaglassofsherry,brandyoryourfavourite

alcoholicdrinkabout30minutesbeforeeating

(rememberthattheeffectsofalcoholmayincreaseif

you’reillortakingparticularmedicines,soit’sbestto

checkthiswithyourdoctor)

• havingsnackshandytonibble

• drinkingnourishingdrinks

• eatingslowly.

Gradually you’ll

find that your

appetite reduces

due to your

illness, or the

medicines

you’re taking.



however,asyouneartheendofyourlife,yourmetabolismslows

downandyourbodynolongerneedsfoodasitcannotdigestit

sowellorabsorbthenutrientsfromit.atthisstage,it’simportant

nottoforceyourselftoeatandit’sokayifyoudon’t.

asacareryoumightfeelanxiousorupsetbecauseyour

relativeorfriendnolongerwantsorenjoysfood.although

thiscanbehardtoaccept,it’simportantthatyoudon’ttryto

forcethemtoeat.Youmaywanttotrygivingthemdrinks

theylikeinstead.

constipationManypeoplefindthatit’seasiertogetconstipatedbecause

theyaren’tmovingaroundoreatinganddrinkingasmuch.

therearealsoanumberofmedicines,suchasstrong

painkillers,thatcancauseconstipation.ifyouare

constipated,letyourdoctorornurseknowsotheycan

prescribelaxatives.itmayalsohelptodrinkasmuchfluidas

possible,andaddhigh-fibrefoodstoyourdiet,suchasfruit

andvegetables,brownrice,breadorpastaifyou’reableto

eatthem.

You may have

swollen legs and

ankles if you’re

not able to move

around much.

It’s important not

to force yourself

to eat and it’s

okay if you don’t.

fluid build-up (oedema)Somepeoplehaveabuild-upoffluidinapartoftheirbody.

thisisknownasoedema.Youmayhaveswollenlegsand

anklesifyou’renotabletomovearoundmuch.watertablets

(diuretics)cansometimeshelp.ifthefluidbuild-upisinyour

legsandankles,yourdoctormayprescribespecialpressure

stockingstohelpreducethis.usingafootstooltokeep

yourfeetupwhensittingcanalsohelp,ascangently

exercisingyourlegs.

anurseorphysiotherapistcanshowyousomeexercisesto

do.itmaybehardertomovearoundifyourlegsareswollen

andthiscanbefrustrating.itmayhelptotalktoyourcarers

abouthowyoufeel.Yournursescanhelpyoufindwaysof

movingaround.

change in appearanceYoumayfinditupsettingifyourappearancehaschanged,

forexampleifyou’velostorputonweight.itcanhelptotalk

throughyourfeelingswithyourcarersoryournurses.they

maybeabletofindwaystohelpyoulookandfeelbetter.

infectionifyou’renotmovingaroundmuchandaren’teatingor

drinkingwell,youmaybemoreatriskofinfection,suchasa

chestorurineinfection.letyourdoctorknowimmediatelyif

youdevelopahightemperatureorstarttofeelshivery,shaky

orunwell.they’llprobablyprescribeantibioticstotreat

theinfection.



breathlessnessSomepeoplewillfeelbreathless.theremaybemanyreasons

forthis,suchascancerinthelung,chroniclungproblems,

generalweakness,fluidinsidethelung(pulmonaryoedema),

fluidaroundthelungs(pleuraleffusion)oranaemia(lowred

bloodcellcount).

breathlessnesscanbeveryfrighteningbuttherearevarious

waysoftreatingit,dependingonthecause.it’simportantto

letyourdoctorsandnursesknowifyouarebreathlessso

theycanhelpyouassoonaspossible.

nursescanshowyouandyourcarersthebestpositionsfor

youtositorstandtoeaseyourbreathing.Youcanalsobe

taughthowtobreathemoreeffectively,howtopaceyour

activityandhowtosaveyourenergy.anxietyisvery

commoninpatientswithbreathlessnessandthiscan

makeyourbreathingfeelevenmoredifficult.Yournurse

canteachyouwaystorelax,sothatyoufeellessanxious

andbreathless.

thereareseveralmedicinesthatcanbeusedfor

breathlessness,suchasaverylowdoseofmorphine.YourGp

canalsoarrangeanoxygensupplyforyouathomeifyou

needthis.

ifbreathlessnessiscausedbyabuild-upoffluidaroundyour

lungs(pleuraleffusion),thefluidcanbedrainedoff.ifit’s

causedbyanaemia(alowredbloodcellcount),thenyour

doctormayarrangeforyoutohaveabloodtransfusion

(seenextpage).

Macmillan’sbookletManaging breathlessnesshas

informationaboutlivingwithbreathlessnessandlearning

howtocopewithit.Youcanorderacopybycalling

0808 808 00 00orgoingtobe.macmillan.org.uk

cough and wheezingYoumayhaveacoughorfeelwheezyandthiscanbe

upsetting.YourGpcanprescribemedicinestohelpwith

thesesymptoms.Sittingasuprightaspossiblewhile

supportedonpillowscanreduceacoughandhelpyou

breathemoreeasily.

Anaemia (low red blood cell levels)anaemiacanmakeyouverytiredandbreathless.ifyou’re

anaemic,yourdoctorornursemayrecommendthatyou

haveabloodtransfusion.Youwillusuallyhavethisasaday

patientinahospitalorhospicebutinsomeareasitmaybe

possibletohaveitdoneathome.

abloodtransfusionmayhelpyoufeelbetterveryquickly

andcanberepeatedifit’sneededandhashelpedyoubefore.

Breathlessness

can be very

frightening

but there are

various ways of

treating it.

A blood

transfusion may

help you feel

better very

quickly and can

be repeated.



bladder problemsifyouhaveproblemsemptyingyourbladderorcannot

controlit,athin,flexibletube(catheter)canbeputintoyour

bladdertodraintheurine.havingacathetersavesyoufrom

thediscomfortoftryingtouseabedpanorbottleifyoucan’t

getoutofbed.

swollen tummy (ascites) withsometypesofcancer,fluidmaysometimesbuildupin

thetummy(abdomen)sothatitbecomesswollen,tightand

uncomfortable.thisisknownasascites.itcansometimesbe

relievedbymedicinesorbyinsertingatubeintothe

abdomentodrainofftheextrafluid.thisisdoneunderlocal

anaestheticandcanberepeatedifneeded.itmayalsobe

managedbytakingwatertablets(knownasdiuretics),which

yourGporspecialistpalliativecarenursewilldiscuss

withyou.

High calcium levels (hypercalcaemia) peoplewithsometypesofcancermayhavehighcalcium

levels.thiscanmakeyoufeeldrowsyorsickandcancause

confusion,constipationandmaymakepainmoredifficultto

copewith.ifyoudevelopthesesymptoms,letyourdistrict

nurseordoctorknowsotheycantakeabloodtesttocheck

yourcalciumlevels.ifyourcalciumlevelishigh,afewdays

oftreatmentinhospitalorahospicewithmedicine

(bisphosphonates)giventhroughadripwillhelptobring

yourcalciumlevelsdown.

comPLEmEntAry tHErAPiEs

althoughcomplementarytherapiescannotcureillnesses,

theyoftenhelptocontrolsymptomsandhelppeople

feelbetter.theycanbeusedaloneorincombination

withmedicines.

complementarytherapiesinclude:

• acupuncture

• homeopathy

• relaxationtechniques

• hypnotherapy

• meditation

• visualisation

• aromatherapy

• reflexology

• reiki.

Youmightliketotrysomecomplementarytherapies,suchas

meditationorvisualisation,toreduceanxiety.othertherapies,

suchasgentlemassage,canbecarriedoutbyyourcarersand

canhelpthemtosupportyou.theorganisationsonpage89

cangiveyoufurtherinformation.

physicalcontactandtouchcanbepowerfulwaysofsupporting

peoplewhoarefacedwithuncertainty,fearorpain,whether

emotionalorphysical.touchingsomeonegentlycanshowhow

muchyoucareaboutthem.Manyhospicesandhospitalsoffer

freecomplementarytherapiestocarers.Youcanaskyournurse

whattherapiesareavailableinyourlocalarea.

MacmillanhasabookletCancer and complementary

therapies,withmoreinformation.

With some

types of cancer,

fluid may

sometimes

build up in

the tummy.

Many hospices

and hospitals

offer free

complementary

therapies

to carers.



LAsting PowEr of AttornEy, AdvAncE dEcisions And AdvAncE stAtEmEnts

Youmayneedtomakeimportantchoicesinthelaterstages

ofyourillness.usuallyyoucantalkaboutyourhealthcare

withthedoctorsandnurseslookingafteryou.however,

theremaycomeatimewhenyoucan’tmakedecisionsor

communicateeasily.

the Mental Capacity Act (2005)appliestopeopleaged16

andoverinenglandandwales.itaimstoprotectpeoplewho

cannotmakeadecisionforthemselves.thismeansthata

personcanplanaheadforatimewhentheymaynotbeable

tomakedecisionsontheirownbehalf.itmakesitclearwho

canmakedecisionsinwhichsituations,andhowtheyshould

dothis.therearemanypartstothisact,includingsections

onlastingpowerofattorneyandadvancedecisions.

theAdults with Incapacity Act (2000)relatestopeople

inScotland.

Lasting Power of Attorney (LPA)alastingpowerofattorney(lpa)iswhereyouputin

writingthenameofsomeoneyoutrusttomanageyour

financial,legalorhealthaffairs,ormakedecisionsonyour

behalfinthefutureifyouarenolongerabletodoso.anlpa

mustbemadewhileyou’reabletounderstandwhatitisand

whatitmeansforyou.it’sonlyvalidinenglandandwales.

Seepage45forinformationaboutScotlandand

northernireland.

The personal

welfare LPA only

allows your

attorney to make

decisions about

your care and

treatment.

thepersonalwelfarelpaonlyallowsyourattorneytomake

decisionsaboutyourcareandtreatment.theycan’tmake

anydecisionsaboutyourpropertyandaffairs,suchasyour

finances.thesecanbemadebyapropertyandfinancial

affairslpa.

thereisafeetoregisteranlpa.ifyou’rereceivingcertain

benefits,orhavealowincome,youmaybeexemptfrom

payingtheregistrationfeeoronlyhavetopaypartofit.

Youcangetmoreinformationaboutregisteringanlpafrom

asocialworkeratthehospital,theofficeofthepublic

Guardianororganisationssuchasageuk(seepage81).

ifyou’reunabletomakeadecisionaboutyourmedical

treatmentandhavenofamilyorfriendstorepresentyour

views‚themedicalstaffarerequiredtoappointan

independentMentalcapacityadvocate(iMca)torepresent

yourinterests.

ScotlandinScotlandthewelfarepowerofattorney(wpa)

isalegaldocumentthatappointsoneormorepeopleto

makedecisionsonyourbehalfaboutyourcareand

treatment,shouldyoubecomeincapable.thewpahastobe

registeredandtheremaybeafeetodothis.Youcanget

moreinformationaboutwpasfromasocialworkeratthe

hospital,theofficeofthepublicGuardian(Scotland)and

organisationssuchasageScotland(seepage81).

Northern Irelandinnorthernirelandit’snotyetpossibleto

appointotherpeopletomakedecisionsaboutyourcareand

treatmentonyourbehalf.newlegislationisbeingconsidered

bythedepartmentofhealth,SocialServicesandpublic

Safetyandisexpectedin2011.

The Mental

Capacity Act

(2005) aims to

protect people

who cannot make

a decision for

themselves.



Advanced decisions to refuse treatment and advanced statements normallyyouwilltalktoyourdoctorabouthowyou’dlike

tobetreatedandwhichtreatmentsyoudon’twanttohave.

Somepeoplewritedowntheirchoicesinadvancesothat,

iftheybecomeunabletodiscussthingswiththeirdoctorsor

makeanydecisions,thedoctorswillstillknowwhattheir

wishesare.

instructionsaboutthetreatmentsyoudoordon’twantare

calledadvanced statementsandadvanced decisions.

theyaresometimesknownasliving wills.

• anadvanced statementisageneralstatementofyour

viewsandwishes.itcanindicatethetreatmentyou’d

preferandcanincludenon-medicalthings,suchasyour

foodlikesanddislikes,orreligiousbeliefs.anadvanced

statementisnotlegallybinding,butyourdoctorsshould

takeitintoaccountwhendecidingwhatisbestforyou.

• anadvanced decision to refuse treatmentissimplya

decisiontorefusetreatment.forexample,youmay

decidethatifyourconditionsuddenlyworsensandyour

breathingstops,youdon’twantpeopletotrytobring

youround(resuscitateyou).or,thatifyouareveryill

andhaveaninfection,youdon’twanttobegiven

antibiotics.inenglandandwales,anadvanceddecision

islegallybindingundertheMental Capacity Act (2005),

andmustberespectedbyyourdoctors.inScotlandan

advanceddecisionisknownasanadvanced directive.

advancedstatementsanddecisionstorefusetreatmentcan

alsoletyourfamilyknowyourwishes,sothattheytoocando

whatyouwouldwant.

An advanced

decision to refuse

treatment is

legally binding

but you can

change your

mind and rewrite

it at any time.

anadvancedstatementcanincludewhoyou’dliketobe

consultedaboutyourcare,ifyou’reunabletomakethose

decisionsyourself.ifyouwanttogivethesepeoplethe

powertomakedecisionsonyourbehalfyou’llneedtocreate

alastingpowerofattorneyorlpa(seepages44–45).the

lpacanincludeyouradvancedstatementsothatthepeople

namedinthelpatakeyourwishesintoaccountwhen

decidingwhatisbestforyou.

anadvanceddecisiontorefusetreatmentmustindicate

exactlywhattreatmentyouwanttorefuseandinwhich

situation.demandstobegiventreatmentsorinterventions

cannotbeincludedinanadvancedecisiontorefuse

treatment.itcanonlybemadebysomeoneaged18orover

whohasthementalcapacitytomakethedecision.itislegally

bindingbutyoucanchangeyourmindandrewriteitatany

time.acopyofyouradvancedecisiontorefusetreatmentcan

bekeptinyourmedicalandnursingnotes.it’salsohelpful

toprovideyourGpwithacopy,aswellasyourlocal

out-of-hoursservice.

innorthernireland,thereiscurrentlynolegislationcovering

theuseofadvancedstatements,livingwillsoradvanced

decisionstorefusetreatment.

Youcangetinformationaboutadvancedstatementsand

decisionstorefusetreatmentfromasocialworkerorfrom

someoftheorganisationslistedonpages75–89,suchasage

uk.YoumayfindithelpfultoreadtheleafletPlanning for

your future care:A guide,whichhasbeenproducedbythe

nhSnationalendoflifecareprogramme.Youcanaskfora

copyfromyourGporatyourlocalhospitalinformation

centre.theleafletisalsoavailableonthedepartmentof

health’scarenetworkswebsitedhcarenetworks.org.uk

Normally you

will talk to your

doctor about how

you’d like to be

treated and

which treatments

you don’t want

to have.



it’simportanttodiscussyourwisheswithamedical

professional,suchasyourGporconsultant,andwithyour

nurse,familyandfriends.rememberthatyourfamilyand

friendsmayseethingsdifferentlytoyou.forexample,

theymaytreasureeveryminuteofyourlife,eventhoughyou

maybeinacomaorunabletorespondtothem.

ifpossible,it’sgoodtohaveanhonestandopendiscussion

withtheminadvance,sothattheyunderstandyourwishes.

itcanbedifficulttodiscusstheseissuesandyoumaywant

supportfromsomeonewhoknowsyouandwhoyoucan

trust.Youcanalsotalktosomeoftheorganisationson

pages75–89.

MacmillancancerSupporthasafactsheetcalledAn advance

decision to refuse treatment (living will),whichyoumayfind

useful.call0808 808 00 00toorderacopy.

Assisted dying or voluntary euthanasiacurrently,underuklaw,anyactionthatspeedsupaperson’s

deathisillegal.althoughyourdoctorandnursescanmake

sureyouhaveenoughpainkillerstokeepyoucomfortable,

it’sillegalforthemtogiveyoumorethanyouneedwiththe

intentionofendingyourlifemorequickly.Doing something

you enjoy can

help to revive

your energy.

informAtion for rELAtivEs And friEnds

caringcanbephysicallyandemotionallyhardwork.

ifyou’vebeenlookingafteryourpartner,relativeorfriend

forsometime,youmaystarttofeeldrained.it’salso

commontohavealotofintenseemotions,includinganger

orresentment,towardsthepersonyou’relookingafter.

ifyoufeellikethis,it’simportanttotellyourGpornurse

sotheycanhelpyoudealwiththeseemotions.

Youmayfindthatyouhaveverylittletimeforyourself,

whichcanbefrustratingandthismaymakeyoufeel

trappedorclaustrophobic.

it’simportanttolookafteryourself,sothinkaboutmaking

arrangementsforsomeonetocomeinregularlysothat

youcanhavesometimetoyourself,evenifit’sonlyfora

fewhoursaweek.ifthereisn’tarelativeorfriendwho

canhelp,youcancontactthecarers’organisationson

pages83–84.

whenyougettimeoff,trytorelax.it’stemptingtospend

thebreakclearingupthehouseordoingthewashing,

butdoingsomethingyouenjoycanhelptoreviveyour

energy.havingsomesupportandhelpcanallowyouto

regainyourpreviousroleofbeingapartner,friend,sonor

daughter.Youcanalsospendtimejustsittingwithand

talkingtothepersonyouarecaringfor.

It’s good to have

an honest and

open discussion

with your family

and friends in

advance, so that

they understand

your wishes.


endoflife:thefactS/thelaStfewdaYSoflife

52

cHAPtEr 4

tHE LAst fEw dAys of LifE

This chapter is about the emotional and physical changes

that a person may have in their last few days of life.

Each person’s experience will be different, so it’s difficult

to predict exactly what will happen or how quickly the

changes will occur.

usuallyyouwillgraduallybecomeveryweakandhave

verylittleenergy,andyoumay:

• finditdifficulttomovearoundandneedhelpgetting

fromyourbedtoachair

• needtospendmostorallofthedayinbed

• loseinterestineatingandhavenoappetitebecauseyour

bodycan’tdigestfoodatthisstageanddoesn’tneedit

• sleepalotandfeeldrowsywhenyouareawake

• feeldisorientatedandunsurewhetheryouaredreaming

• dreamaboutpeoplewhoarenotthereorthatyouknew

inthepast–yourmindmaybringupoldmemories

• loseinterestinyoursurroundingsandevenyourclosefamily.


• physicalcare

• Symptoms


onpages54–57.

Each person’s

experience will

be different in

their last few

days of life.


endoflife:thefactS/thelaStfewdaYSoflife

54 MacMillancancerSupport/Mariecuriecancercare

thelaStfewdaYSoflife/endoflife:thefactS

PHysicAL cArE

duringthelastfewdaysofyourlife,thepeoplelookingafter

youwillneedtogiveyoualotofphysicalcare.itmaybe

strangeforyoutohavetoacceptsomuchhelpfromyour

carersbutitcanalsobeatimewhenyoubecomeveryclose

emotionally.ifyourcarersneedhelptowashandbatheyou,

yourdistrictorspecialistnursecanarrangethis.theycan

alsoshowyourcarershowtoliftandmoveyousafely.

asyourmouthoftenbecomesdry,itwillneedtobe

moistenedregularly.Yourdistrictnursecangetmouthcare

sticks(likebigcottonbuds)andshowyourcarershowtouse

them.theycanalsoapplylipbalmtokeepyourlipsmoist.

topreventyourskinfromgettingsore,it’simportantthat

yourcarersmoisturiseitandhelpyouchangeyourposition

regularly.Yournursescanadviseyourcarersonhowtomake

sureyou’reinacomfortablepositionwhenyou’reunableto

moveyourself.Youcanusevariouspressurecareaidstohelp

keepyoucomfortableincludingcushionsforchairs,

mattressesforbedsandspecialbedswithpressure-relieving

mattresses.Yourdistrictnursecanassesswhatyouneedand

arrangetheseforyou.

theremaybealotoftimewhenyoudon’tneedtohave

anythingdoneandyoucanjustliequietlyandhaveyour

relativesorfriendssittingwithyou.thiscanbeavery

intimateandspecialtime.Youcanletthemknowwhether

you’dliketotalk,haveaquiettimeorlistentomusicthatyou

like.Youcanalsoletthemknowifyouneedsometime

completelyonyourown.

It may be strange

for you to have

to accept so

much help from

your carers.

symPtoms

ifyoursymptomschange,yourmedicinesmayneedtobe

changed.Somemedicinesmaynolongerbenecessaryand

maybestopped.ifyoudevelopnewsymptoms,new

medicinesmaybestarted.

ifyouhaveproblemsswallowing,it’spossibletogiveall

themedicinesthatyou’remostlikelytoneedeitherby

injection,bypatchesstuckontotheskin,bysuppositoryor

byusingasyringedriver(seepage35).

Some medicines

may no longer be

necessary and

may be stopped.


endoflife:thefactS/thelaStfewdaYSoflifethelaStfewdaYSoflife/endoflife:thefactS

informAtion forrELAtivEs And friEnds

This part of the chapter is written for relatives and

friends, but you may find it helpful to read it together.

PainYourrelativeorfriendmayseemtobeinpain:theymay

berestless,grimace(screwuptheirface)ormoveasif

they’reindistress.theymaysweatandhaveafast

heartbeatandbreathingrate.ifthishappens,thedose

oftheirpainkillersmayneedtobeincreased.letyour

doctororspecialistnurseknowsotheycanadviseyou

aboutthisandcancheckforothercausesofthese

changes,suchasaninfection.

breathing changesifyourrelativeorfriendseemstohaveproblems

breathing,anumberofmedicinescanbegiventohelp.

theirnurseorGpcanalsoarrangeforoxygentobegiven

tothemathome.theirbreathingmaybenoisyduetofluid

collectingintheirbreathingpassages.althoughthiscan

bedistressingforrelativesandfriends,thepersonwon’t

usuallyseemdistressedthemselves.

If a person is

restless due to

emotional

distress, they

may gain

comfort from

a close friend.

restless moving, shouting, agitation, twitching or jerking of the body Sometimespeoplehavesymptomsofrestlessness,

agitation,confusion,shoutingortwitching.these

symptomsareoftenknownasterminalrestlessness.

themaincauseisusuallyduetochemicalchangesthat

arehappeninginthebodyandthebuild-upofwaste

chemicals(toxins).thesechemicalsaffectthebrainand

nervesandcausetherestlessness.terminalrestlessness

canoftenbewellcontrolledwithdifferentmedicines,

suchassedativeswhichcanbegivenbyinjectionorby

asyringedriver.

Sometimespain,constipation,infectionormedicinescan

alsocausethesesymptoms.oncethesearetreated,the

symptomssettle.ifapersonisrestlessduetoemotional

distress,theymaygaincomfortfromaclosefriend,

trustedhealthprofessional,orspiritualorreligiousleader.

Let your doctor

or specialist

nurse know if

your relative or

friend seems to

be in pain.


endoflife:thefactS/thelaStfewdaYSoflifethelaStfewdaYSoflife/endoflife:thefactS

incontinenceassomeonegetsclosertodeath,theymaylosecontrol

overtheirbowelandbladder.Youcantalktothedistrict

nurseaboutthis,andtheycangetyouaidstohelp,suchas

bedcoversandpads.Mencanhaveasheathputoverthe

penistocollecturineanddrainitintoacatheterbag.

Sometimesitmaybemorecomfortableforthepersonto

haveatube(catheter)putintothebladdertodrainaway

theurine.Yourdistrictnursemaybeabletohelporganise

alaundryserviceifyouneedit.

urine retentionSometimesurinecan’tdrainoutofthebladder,andsothe

personcannotpassurine.thiscausessevereabdominal

pain,andtheirtummy(abdomen)willfeelveryhardand

bloated.ifthishappens,it’simportanttocontactyour

doctorornurseandaskthemtocomeurgently.theycan

putacatheterintothebladdertodraintheurineand

relievethepain.

religious and spiritual needsYourrelativeorfriendmaywanttohaveparticular

practicescarriedout,orprayersread,astheyaredying.

it’simportanttodowhateveryoubothfeelisrightand

mosthelpful.keepanoteofanyoneyouneedtocontact

inthissituation.

Help and supportifyou’reworriedatanytimethatyourrelativeorfriend

seemstobedistressedorhaveuncomfortablesymptoms,

youcancontacttheGp,districtnurseorspecialistnurse

foradviceandreassurance.You’llbegivennumbersfor

contactingtheseteamsoutofhoursshouldyou

needthem.

It’s important to

do whatever you

both feel is right

and most helpful.

You can talk to

the district nurse

and they can get

you aids to help.

endoflife:thefactS/nearinGdeath


cHAPtEr 5

nEAring dEAtH

The thought of death nearing can be very frightening.

Although death is a normal process, it’s natural to worry

about what will happen. You may want to have a religious

or spiritual adviser present and may want to carry out

particular religious practices. It’s important to do whatever

you feel is right at this time.


• whathappens

• Mindchanges

• physicalchanges

• finalmomentsoflife


onpages61–63.

Although death is

a normal process,

it’s natural to

worry about what

will happen.


endoflife:thefactS/nearinGdeathnearinGdeath/endoflife:thefactS

wHAt HAPPEns

formanypeople,dyingisverypeaceful.Youwillusuallyslip

slowlyintounconsciousnessandfindthatit’sdifficultto

wakeup.

Generally,peopleeventuallybecomecompletely

unconscious:theycannotbewokenatall,butmaystillbe

abletohearandbeawareofthepeoplearoundthem.

Somepeoplehavephaseswheretheyareawakeandcan

talk,andthenslipbackintounconsciousness.

ifanythinghappensthatworriesyourcarersduringthistime,

forexample,ifyouhavepainorothersymptomsthatare

difficulttocontrol,yourcarerscancontactyourdistrict

nurse,specialistnurseorGp.theycangiveyoumedicinesto

controlyoursymptoms,eitherasaninjectionorthrougha

syringedriver.theycanalsodiscussanyconcernsthatyou

oryourcarershaveandreassureyou.

YoumaywanttoreadMacmillancancerSupport’sbooklet

Dying with cancer,whichhasfurtherinformation.

call0808 808 00 00toorderacopy.

For many

people, dying is

very peaceful.

informAtion forrELAtivEs And friEnds

evenifyourrelativeorfriendisunabletorespond,they

maystillbeabletohearyouandtheymaystillknowyou

arethere.Soitcanhelptospeaktothemandletthem

knowwhatyou’redoing,especiallyifyou’regivingthem

medicinesormovingthem.thismayfeelstrangeasthey

cannotrespond,butitcanbecomfortingforbothofyou.

theremaybetimeswherenotmuchneedstobedoneand

youcanjustsitwiththemandbeclosetothem.Youmay

needtomovethemregularlytokeepthemcomfortable.

it‘sfinetocallyourGporspecialistnursetoletthemknow

whatishappeningandtoaskforadvice.

mind cHAngEs

ifyourrelativeorfriendisdriftinginandoutof

consciousness,theymaynotseemtorecogniseyouor

theotherpeoplearoundthem.Youmayfindthis

distressing.theymayalsotalktopeoplewhotheyknew

inthepast,orwhodiedlongago,probablybecausethey

arethinkingofthesepeople.iftheyseempanickyor

agitated,sedativesmaybegiventhroughasyringedriver.

terminalrestlessnessmayoccur,asdescribedonpage55.

Even if your

relative or friend

is unable to

respond, they

may still be able

to hear you.

endoflife:thefactS/nearinGdeathnearinGdeath/endoflife:thefactS


PHysicAL cHAngEs

Yourrelativeorfriendwillnotusuallyfeelthirstyatthis

stagebuttheirmouthmaybedryandneedtobe

moistened.iftheyfeelsick,anti-sicknessmedicinescan

begivenbythesyringedriverorasasuppository.

skin and sensation changesinthelastfewhours,yourrelative’sorfriend’shands,

feetandtherestoftheirskinmayfeelverycoldand

possiblymoist.Sometimestheskinchangescolourand

becomesslightlymoreblue,greyorwhite.theirskinmay

alsobeverysensitivetotouch,soifyoumovethembe

verygentleandtellthemwhatyou’redoing.

Severallayersoflight,warmclothingandbeddingcan

helptokeepthematacomfortabletemperature.

breathingasyourrelativeorfriendgetsclosertodeath,their

breathingpatternwillprobablychange.theirbreathing

maybecomeirregular,withlongergapsbetweenthe

breaths.itmayalsobecomeverynoisy,duetoabuild-up

offluidintheirairpassagesastheyarelyingflat.thismay

bedistressingforyouandanyotherpeoplearound,butit

isn’tusuallydistressingforthepersonwhoisdying.

iffluiddoesbuildupintheairpassages,drugscanbe

givenbyinjectiontoreducethebuild-upoffurther

secretions.Sometimesthesedrugsaregivenina

syringedriver.

finAL momEnts of LifE

formostpeople,theirfinalmomentsareverypeaceful.

theirbreathingmaybecomeevenslowerandmore

irregularwithverylongpausesbetweeneachbreath.

theirtummy(abdominal)musclesmaytakeovercontrol

ofthebreathingfromthechestmuscles,sothattheir

tummyrisesandfallswitheachbreath.

finally,theywillstopbreathingaltogether.thismayseem

totakealongtimeforsomepeople.forothersitwillonly

beafewminutes.Sometimesitcanbedifficulttopinpoint

theexactmomentofdeath.often,theperson’sbodywill

relaxcompletelyandtheymaylookverypeaceful.Some

peoplefeeltheycansensewhenthepersonhasdied.

insomecultures,thereisabeliefthattheperson’s

consciousness(mindorsoul)staysaroundthebodyfor

sometimeafterdeath.otherpeoplefeelthatthe

consciousnessmovesonquicklytoanotherplace.

Somepeoplebelievethatlifejustendsandnothingis

leftoftheperson’smindorconsciousness.

As your relative

or friend gets

closer to death,

their breathing

pattern will

probably change.

Often, the

person’s body

will relax

completely and

they may look

very peaceful.


endoflife:thefactS/afterthedeath

66

cHAPtEr 6

AftEr tHE dEAtH

The death of someone close to you is a very significant

event in a person’s life and everyone reacts differently.

You may feel shocked and numb, as though you cannot

believe that it has happened. You may have lots of

overwhelming emotions, such as feeling extremely upset

and angry. Many people find they also feel very relieved

that their relative or friend can now be at peace.

Mostculturesandreligionshaveprocessesorritualsthatthey

carryoutatthetimeofdeath.it’simportantforyoutodowhat

youfeelisright.theremaybesomethingsthatyouneedtodo.

however,youdon’tusuallyneedtodoanythingstraightaway,so

youdon’thavetofeelrushed.Youcanjustsitwithyourrelative’s

orfriend’sbodyforawhile.Manypeopleliketositandtalkor

holdhands,andseetheirrelativeorfriendatpeace,especiallyif

thelastfewhoursordayswereastrain.Youmaywanttohave

someonetheretosupportyou.itmayhelptoaskthemto

contactotherpeopletoletthemknow,ifyoudon’tfeelupto

tellingthem.aspiritualorreligiousadvisercanalsosupportyou

andcarryoutanyprocessesorritualsthatareimportanttoyou

andyourrelativeorfriend.


• whatyourGpwilldo

• whatyourfuneraldirectorwilldo

• planningafuneralandburialoracremation

• registeringthedeath

• howgriefmightaffectyou

You may have

lots of

overwhelming

emotions.


endoflife:thefactS/afterthedeathafterthedeath/endoflife:thefactS

wHAt your gP wiLL do

Youwillneedtotellyourrelative’sorfriend’sGpabouttheir

deathwithinafewhours.theGporacommunitynursewill

comeassoonaspossibletoverifythedeath.ifyourGp

comes,theywillverifythedeathandgiveyouamedical

certificateforthecauseofdeathwithaformcalledNotice to

informant,whichtellsyouhowtoregisterthedeath.ifa

communitynursecomes,oryouhavetocallanout-of-hours

doctor,theycanverifythedeathbutyoumayneedtogetthe

deathcertificatefromyourGpthefollowingday.

thedoctorwhocertifiesthedeathhasalegalresponsibility

toinformthecoronerifapost-mortemisneeded.

however,apost-mortemisn’tusuallynecessaryifthedeath

wasexpectedexceptinsomecases,suchasmesothelioma,

wherethecanceriscausedbyoccupationalexposure

toasbestos.

apost-mortemwillusuallytakeafewdaystoarrangeif

needed,afterwhichyou’llgetamedicaldeathcertificate.

thiscanhelptogiveexactinformationaboutthecauseof

death.Youwillneedtowaituntilyourdoctorhasdecided

whetherapost-mortemisneededbeforeyousetadatefor

thefuneraloralternativeservice.

whenyouhavethemedicaldeathcertificate,youneedto

takethistothelocalregistrar’sofficetoregisterthedeath

(seepages69–70).

You will need to

tell your relative’s

or friend’s GP

about their death

within a few hours.

wHAt your funErAL dirEctor wiLL do

onceyou’vehadthedeathverifiedbyanurseordoctor,

youcancontactthefuneraldirector(undertaker).they

providea24-hourserviceandcanadviseyouonwhattodo.

detailsoffuneraldirectorsareinyourlocalphonebookoron

theinternet.Youcanalsogetinformationfromthenational

associationoffuneraldirectorsonpage87.whenyou

contactthefuneraldirector,theywillcomeassoonasyou

wantthemto.

Youcanletthefuneraldirectorknowifyou’dlikethemto

helpyoulookafteryourrelative’sorfriend’sbodyathome

untilthefuneral,orwhetheryouwouldlikeittobetakento

thefuneraldirector’schapelofrest.Youcanvisitthechapel

ofresttobewithyourrelative’sorfriend’sbodyifyou’d

liketo.

caring for the bodythefuneraldirectorwilltakecareofyourrelative’sorfriend’s

bodyandwillwashthem.thisprocessisdifferentfor

differentreligionsandculturesbutusuallyinvolvescarefully

washinganddryingthebody,closingtheeyelids,andmaking

suretheirmouthissupportedwhileclosed.theperson’shair

istidiedandsometimeswashed.thefuneraldirectorwillalso

askifyou’dlikethemtobedressedinanyspecificclothes,

suchasafavouriteoutfit.

ifyou’dliketohelpthefuneraldirectorswashanddressyour

relativeorfriend,letthemknowassoonaspossiblesothey

canarrangethis.

You can visit the

chapel of rest to

be with your

relative’s or

friend’s body if

you’d like to.

afterthedeath/endoflife:thefactS endoflife:thefactS/afterthedeath


EmbalmingSomepeoplewanttobeembalmed.inthisprocess,thebody

isdisinfectedandtreatedwithchemicalstohelppreserveit.

bloodisdrainedoutofthebodyandreplacedwith

embalmingfluid.thisiscarriedoutatthefuneraldirectors.

PLAnning A funErAL And buriAL or A crEmAtion

funeralsandmemorialsallowrelativesandfriendstopay

theirrespectstothepersonwhohasdied.it’sawayof

acknowledgingtheirdeathandsayinggoodbye.

Youcanmakeallthearrangementsforthefuneralandburial

yourselfifyou’dliketo.however,mostpeopleprefertohave

thehelpofthefuneraldirector.YourGpwillneedtoknowif

you’replanningacremationsotheycancompletethe

relevantpaperwork.

beforemakinganyfuneralarrangements,it’simportantto

considerseveralissues:

• whatwerethewishesofthedeadperson?

• havetheyexpressedtheirwishesinawill?

• whatareyourwishes?

Somepeoplehavestrongreligiousbeliefsorviewsabout

howthey’dliketheirfuneraltobecarriedout.otherpeople

havenoreligiousorspiritualbeliefsandmayhaveanon-

religiousorhumanistfuneral.it’snotnecessaryforareligious

leadertoconductafuneralormemorialservice.Yourfuneral

directorsortheregistrarcangiveyouinformationabout

non-religiousservicesifyouprefer.afuneral,religiousor

A funeral,

religious or

spiritual service

can be held

wherever

you wish.

spiritualservicecanbeheldwhereveryouwish,forexample,

intheperson’shomeorintheirfavouriteplace.

afterthememorialservice,theperson’sbodyiscremated

orburied.

Cremationtakesplaceinadesignatedcrematorium.

theashesofthepersonaregiveninacontainertothenext

ofkin.Youmayhavediscussedwithyourlovedonewhat

theywantedtodowiththeirashesandyoucancarryout

thesewisheswhenyouareready.

Burialisusuallyinachurchyardorotherdesignatedburial

place.it’salsopossibleforpeopletobeburiedinother

places,suchasagarden.

therearebookswithhelpfuladviceandinformationon

page90.

rEgistEring tHE dEAtH

Youneedtotakethemedicaldeathcertificate–andbirth

andmarriagecertificates–totheregistrar’sofficeinthearea

wherethedeathoccurred.thisneedstobedonewithinfive

days(eightdaysinScotland).

Someregistrars’officeshaveanappointmentsystem,

socheckbeforeyougo.Youcanfindthenumberofyour

localregistrar’sofficelistedunderregistrationofbirths,

deathsandmarriagesinthebusinesssectionofyourlocal

phonebookanditmayalsobeontheenvelopecontaining

thedeathcertificate.ifyou’renotabletogoyourself,

anotherpersoncanactasan‘informant’andregisterthe

deathforyou.

You need to take

the medical

death certificate

to the registrar’s

office in the area

where the death

occurred.



beforeyouattendtheregistrar’soffice,it’shelpfultothink

abouthowmanycopiesofthedeathcertificateyoumight

need.Youcanbuy‘certifiedcopies’forasmallchargeatthe

timeofregistration.theseareduplicateoriginalcertified

copiesofentryandnotphotocopies.You’llusuallyneedone

certifiedcopyforeachlifeinsurancepolicyorsimilarwhich

youneedtoclaim.

attheregistrar’soffice,theregistrarwillenterdetailsofthe

deathintheregisterandgiveyouacertificateofburialor

cremation,alsoknownasagreenform.Youneedtogivethis

tothefuneraldirector.theregistrarwillalsogiveyoua

certificateofregistrationofdeathform(bd8)ifthisis

neededforsocialsecuritypurposes.

information Yourdistrictorpalliativecarenursecangiveyouinformation

aboutwhattodowhensomeonedies.theconsumers’

associationpublishesWhat to do When Someone Dies,

whichisavailableinmostpubliclibraries(seepage90).

At the registrar’s

office, the

registrar will

enter details

of the death in

the register.

How griEf migHt AffEct you

Emotional effectsthedeathofapartner,relativeorclosefriendisanextremely

difficultsituationtofaceandyoumayfeelveryupset,

anxiousanddistressed.immediatelyafterthedeath,andfor

sometimeafterwards,youmayfeelnumbandfindithardto

believethatthepersonisdead.it’scommontofeelangry

thattheyhavedied.thisangermaybedirectedattheperson

themselfforleavingyou,oratotherpeople,suchasfamily

membersorhealthprofessionals,fornotbeingabletosave

themfromdying.

thefeelingofmissingthepersoncanbeoverwhelming.

Manypeoplecontinueto‘see’or‘hear’thepersonwhohas

died,andhaveastrongsenseoftheirpresence.forexample,

somepeoplewalkintoaroomandhaveanexperienceof

‘seeing’thepersonsittingintheirfavouritearmchair.

otherpeoplehavevividdreamsinwhichtheyseethe

deadpersonasfitandwell.theseareperfectlynormal

experiences,althoughtheycanbeshockingandupsetting.

ifyou’dlikesupportatthistime,youcancontactyourGp,

specialistnurse,oracounsellingservice–seepages84–86.

cruseisaspecificcounsellingserviceforpeoplewhohave

beenbereavedandyoucancallthemon0844 477 9400.

The feeling of

missing the

person can be

overwhelming.



Physical effects whensomeoneclosetoyouhasdied,it’scommontohave

physicalsymptomsforsometimeafterwards.thesecanbe

frighteningandsomepeoplesaythesymptomsaresostrong

thattheyworrytheyareseriouslyillthemselves.

however,physicalreactionsarenormalandcaninclude

headaches,dizziness,adrymouth,feelingweak,tightness

inthechestandthroat,breathlessnessandfeelingsick.

Youmaybeawarethatyoursymptomsaresimilartothose

ofyourrelativeorfriendwhohasjustdied.ifanyofthese

symptomspersistyoushouldletyourGpknow.

Practical helpimmediatelyafterthedeath,whileyouareprobablyfeeling

numb,youmayneedplentyofpracticalhelptodoimportant

taskssuchasregisteringthedeath,arrangingthefuneraland

copingwithvisitors.Youmayalsoneedtospendsometime

onyourown,comingtotermswithwhathashappened.

After the funeraltheperiodoftimeafterthefuneral,wheneveryonehasgone

homeandyouareexpectedtopickupthethreadsofyour

ownlife,canbethehardest.it’sagoodideatotrynottodo

toomuchtoosoon.Youmayneedtimetogetusedtoyour

lossandthechangesthishasbroughtabout.it’simportantto

taketimetolookafteryourself.

don’tbeafraidtoshowyouremotionsduringthegrieving

process–it’sperfectlynaturaltocrywhenyou’rethinking

andtalkingaboutyourlovedone,andthiscanhelpyoufeel

better.Somecultureshavespecificpracticestofollow,which

canhelptomarkeachphaseofthebereavementprocess

afteraperson’sdeath.

Youmayfindthebook,What to do When Someone Dies

(seepage90)helpful.ithaspracticaladviceonwhattodo

whensomeonedies,andsectionson:registeringthe

death;deathinhospital;thecoroner;registration;burial;

cremation;funerals;non-religiousfunerals;grief;probate;

pensions;property;organdonation;andbodydonation

forresearch.

Don’t be afraid

to show your

emotions during

the grieving

process.

When someone

close to you

has died, it’s

common to

have physical

symptoms for

some time

afterwards.


endoflife:thefactS/nationalorGaniSationSthatcanhelp

76

cHAPtEr 7

nAtionAL orgAnisAtions tHAt cAn HELP

We’ve listed organisations that may be able to help you.

These are divided into the following sections:

• howMacmillancancerSupportcanhelpyou

• howMariecuriecancercarecanhelpyou

• usefulorganisations

• carers’organisations

• counselling,bereavementandemotionalsupport

• practicalandfinancialsupport

• paincontrolorganisations

• complementarytherapyorganisations

• usefulbooksandleaflets

endoflife:thefactS/nationalorGaniSationSthatcanhelp


nationalorGaniSationSthatcanhelp/endoflife:thefactS

How mAcmiLLAn cAncEr suPPort cAn HELP you

Macmillan Cancer Support

89albertembankment,

londonSe17uQ

Generalenquiries

020 7840 7840

Questions about living with cancer?

callfreeon0808 808 00 00

(Mon–fri,9am–8pm)

alternatively,visitmacmillan.org.uk

Hard of hearing?

usetextphone0808 808 0121,

ortextrelay.

Non English speaker?

interpretersavailable.

MacmillancancerSupportimprovesthe

livesofpeopleaffectedbycancer.we

areasourceofsupport:providing

practical,medical,emotionaland

financialhelp.weareaforceforchange:

listeningtopeopleaffected

bycancerandworkingtogether

toimprovecancercarelocally

andnationally.

wehaveawiderangeofservices

andactivitiesthatmightbeofhelp

andinterest.

clear, reliable informationweprovideexpert,up-to-date

informationaboutcancer–the

differenttypes,testsandtreatments,

andlivingwiththecondition.

wecanhelpyoubyphone,email,

viaourwebsiteandpublications,

orinperson.

andourinformationisfreetoall–

peoplewithcancer,familiesand

friends,aswellasprofessionals.

Justcallandspeaktooneofourcancer

supportspecialists.orvisitoneofour

informationandsupportcentres–

basedinhospitals,librariesandmobile

centres–andspeakwithsomeone

face-to-face.

Need out-of-hours support?our

phoneserviceisopenMonday–friday,

9am–8pm.atanytimeofday,youcan

findalotofinformationonourwebsite,

macmillan.org.uk,orjoinouronline

communityatmacmillan.org.uk/

communityformedicalattentionout

ofhours,pleasecontactyourGpfor

theirout-of-hoursservice.

thefollowingorganisationscanoffer

immediateinformationandsupport:

NHS Direct08454647

www.nhsdirect.nhs.uk

NHS Scotland

0845242424

www.nhs24.com

Samaritans08457909090

www.samaritans.org.uk

someone to talk towhenyou,orsomeoneclosetoyou,has

cancer,itcanbedifficultsometimesto

talkabouthowyou’refeeling.Youcan

callourcancersupportspecialiststotalk

abouthowyoufeelandwhat’s

worryingyou.

alternatively,wecanhelpyoufind

supportinyourlocalarea,soyoucan

speakface-to-facewithpeoplewho

understandwhatyou’regoingthrough.

Professional helpourMacmillannurses,doctorsandother

healthandsocialcareprofessionalsoffer

experttreatmentandcare.theyhelp

individualsandfamiliesdealwithcancer

fromdiagnosisonwards,untilpeople

decidetheynolongerneedthishelp.

YoucanaskyourGp,hospitalconsultant,

districtnurseorhospitalwardsisterif

thereareanyMacmillanprofessionals

availableinyourarea,orcallus.

support for each othernooneknowsmoreabouttheimpact

cancerhasonaperson’slifethanthose

whohavebeenaffectedbythedisease

themselves.that’swhywehelptobring

peoplewithcancerandcarerstogether

intheircommunitiesandonline.Youcan

findoutaboutpeopleaffectedbycancer

whomeetinyourareatosupporteach

otherbycallingusorbyvisiting

macmillan.org.uk/selfhelpandsupport

Youcanalsoshareyourexperiences,ask

questionsandgetsupportfromothers

byheadingtoouronlinecommunityat

macmillan.org.uk/community


nationalorGaniSationSthatcanhelp/endoflife:thefactS endoflife:thefactS/nationalorGaniSationSthatcanhelp

financial and work-related supporthavingcancercanbringextracostssuch

ashospitalparking,travelfaresand

higherheatingbills.

ifyou’vebeenaffectedinthisway,we

canhelp.allyouneedtodoiscallour

helplineandoneofourspecialistswill

tellyouaboutthebenefitsandother

financialhelpyoumaybeentitledto.

Legaciesforfree,generaladviceonwritingawill,

Macmillan’slegacyteamisheretohelp.

ourbooklet,Family. Friends. Macmillan?

hasusefulinformationaboutmakingor

updatingyourwill.wealsohavea

Macmillanlegacyadviserinyourarea

whowouldbehappytocallorvisitfora

confidentialchat.

tofindoutmore,calluson0800 107

4448,visitmacmillan.org.uk/legaciesor

[email protected]

get involvedtherearemanywaysthatyou,your

friendsorfamilycangetinvolvedwith

Macmillanandhelpotherpeople

affectedbycancer.

use your experience to speak outShareyourexperiences–online,inthe

media,witheachother.oruseyour

experiencetoimprovecancercare–

joinMacmillancancerVoicesandget

involvedinopportunitiesthatcanmake

arealdifferencetopeople’slives.

campaign with usJoinoneofourcampaigns–helpus

fightdiscrimination,tackleinequalities

andgetabetterdealforpeople

affectedbycancer.

give your timebecomeavolunteer–giveabitofyour

timeandenergytomakeadifference

toothers,andmeetnewfriendsatthe

sametime.

fundraiseraisesomemoney–hostacoffee

morning,holdastreetcollectionor

organiseyourownsponsoredevent.

donateGivesomemoney–whetheryougivea

one-offdonation,setupadirectdebit,

donatethroughpayrollgivingorleave

alegacy,we’lluseeverypennytohelp

supportpeopleaffectedbycancer.

findoutmoreaboutallthese

opportunitieson

be.macmillan.org.uk



How mAriE curiE cAncEr cArE cAn HELP you

Marie Curie Cancer Care

89albertembankment

londonSe17tp

Generalenquiries

0800 716 146(freecall)

Mariecuriecancercareisaukcharity

dedicatedtothecareofpeoplewith

cancerandotherlife-limitingillnesses.

wehavemorethan2,000Mariecurie

nursesandhealthcareassistants

acrosstheuk,providingendoflifecare

forpatientsathomeandsupportfor

theirfamilies.ourservicesarealways

freeforpatientsandfamilies.

therearenineMariecuriehospices

acrosstheukofferingspecialistcare

forinpatientsalongwithdayservices.

thehospicesareinbelfast,bradford,

edinburgh,Glasgow,hampstead

(london),liverpool,newcastle,

penarth(cardiff),andSolihull.

talktoyourdistrictnurseorGptosee

iftheythinkyoucouldbenefitfrom

Mariecurie’sservices.

VisitMariecurie’swebsiteforfilm

guidesfeaturingpractical

demonstrationsfocusingonpersonal

careandeverydayliving.aswellas

filmsyou’llfindourwebsitemariecurie.

org.uk ispackedwithinformationfor

peoplewithcancerandotherlife-

limitingillnessesandtheirfamilies.

support marie curie cancer careourservicesarefreetopatientsand

familiesbutwerelyonthegenerous

supportofthepublictocontinue

ourwork.

therearemanywaysyoucansupport

Mariecuriecancercare,frommakinga

donationorleavingagiftinyourwill,

throughtotakingpartinaneventor

helpingoutwithstreetcollections

duringourGreatdaffodilappealeach

March.Visitourwebsitemariecurie.

org.uk tofindoutmoreorphone

0800 716 146(freecall).

usEfuL orgAnisAtions

Age uk207–221pentonvilleroad,

londonn19uZ

Advice Line08001696565

(daily,8am–7pm)

[email protected]

orfromthewebsite

www.ageuk.org.uk

ageukcombinesageconcernand

helptheaged.ifyouareanolder

personandyouneedinformation

oradviceonanythingfromhealth

tohousing,callitsfreenational

informationline.ageukalsopublishes

impartialandinformativefactsheets

andadviceguides.

Age cymru tyJohnpathy,

units13/14neptunecourt,

Vanguardway,cardiffcf245pJ

Tel08001696565

[email protected]

Age northern ireland 3lowercrescent,belfastbt71nr

Tel08088087575

Email

[email protected]

Age scotlandcausewaysidehouse,160

causewayside,edinburgheh91pr

Tel08451259732

Emailenquiries@

ageconcernandhelptheaged

scotland.org.uk

british Heart foundationGreaterlondonhouse,

180hampsteadroad,

londonnw17aw

Tel02075540000

[email protected]

Heart Helpline03003303311

(Mon–fri,9am–6pm)

www.bhf.org.uk

thelargestindependentfunderof

heartresearchintheuk.aswellas

playinganimportantroleinfunding

education,reachingthepublicand

healthprofessionals,italsoprovides

life-savingcardiacequipmentand

supportforrehabilitationandpatient

care.itshealthinformationseries,

whichcoversarangeofheartand

health-relatedtopics,canbeordered

ordownloadedfromitswebsite.



british Lung foundation73–75Goswellroad,londonec1V7er

Tel02076885555

Helpline08458505020

www.lunguk.org

Supportspeopleaffectedbylung

disease,helpingthemunderstandtheir

condition.providescomprehensiveand

clearinformationonpaper,onlineand

overthetelephone.

citizens Advice bureau findcontactdetailsforyourlocal

officeinthephonebook

oratcitizensadvice.org.uk

findadvicefortheukonline,inarange

oflanguages,atadviceguide.org.uk

citizensadvicebureausprovidefree,

confidential,independentadviceona

varietyofissuesincludingfinancial,

legal,housingandemployment.

citizens Advice scotlandwww.cas.org.uk

Help the Hospiceshospicehouse,34–44britanniaStreet,

londonwc1X9JG

Tel 02075208200

Fax02072781021

[email protected]

www.helpthehospices.org.uk

acharityprovidingawiderangeof

informationrelevanttolivingwith

advancedillness.compilesadirectory

ofhospiceservices,aswellaspractical

booklets.theseareallavailablefree

onitswebsite.

nHs directTel08454647

www.nhsdirect.nhs.uk

nhShealthinformationservicefor

england,coveringallaspectsofhealth,

illnessandtreatments.

nHs 24 in scotlandTel 08454242424

www.nhs24.com

office of the Public guardianpobox15118,birminghamb166GX

Tel08453302900(Mon–fri,

9am–5pm,weds,10am–5pm)

Fax02076647551

Emailcustomerservices@

publicguardian.gsi.gov.uk

www.publicguardian.gov.uk

Supportsandpromotesdecision-

makingforthosewholackcapacityor

wouldliketoplanfortheirfuture,

withintheframeworkoftheMental

Capacity Act (2005).

cArErs’ orgAnisAtions

carers uk 20GreatdoverStreet,londonSe14lX

Tel02073784999

Carers line08088087777

(wedsandthurs,10am–12pm

and2–4pm)

[email protected]

www.carersuk.org

offersinformationandsupportto

carers.canputpeopleincontactwith

supportgroupsforcarersintheirarea.

hasnationalofficesforScotland,

walesandnorthernireland:

carers scotland thecottage,21pearceStreet,

GlasgowG513ut

Tel01414453070

[email protected]

www.carerscotland.org



carers wales riverhouse,Ynsbridgecourt,

Gwaelod-y-Garth,cardiffcf159SS

Tel02920811370

[email protected]

www.carerswales.org

carers northern ireland 58howardStreet,belfastbt16pJ

Tel02890439843

[email protected]

www.carersni.org

counsELLing, bErEAvEmEnt And EmotionAL suPPort

british Association for counselling and Psychotherapy (bAcP) bacphouse,15StJohn’sbusiness

park,lutterworth,

leicestershirele174hb

Tel01455883300

[email protected]

www.bacp.co.uk

aimstopromotetheawarenessand

availabilityofcounselling,andto

signpostpeopletoappropriate

services.hasadatabaseonits

websitewhereyoucansearchfor

aqualifiedcounsellor.

childhood bereavement network 8wakleyStreet,londonec1V7Qe

Tel02078436309

[email protected]

www.childhoodbereavementnetwork.

org.uk

anational,multi-professionalgroupof

organisationsandindividualsworking

withbereavedchildrenandyoung

people.hasanonlinedirectory,which

youcansearchforlocalservices.

compassionate friends 53northStreet,bristolbS3ien

Tel08451203785

Helpline08451232304

(openeverydayoftheyear,

10am–4pmand7–10pm)

Helpline [email protected]

www.tcf.org.uk

abefriendingserviceforthefamiliesof

childrenwhohavedied.thehelplineis

alwaysansweredbyabereavedparent

whoistheretolistenwhenyouneed

someonetotalkto.

cruse bereavement care pobox800,richmond,

Surreytw91rG

Helpline08444779400

(Mon–fri,9.30am–5pm)

[email protected]

Young person’s freephone helpline

08088081677

Young person’s helpline email

[email protected]

www.crusebereavementcare.org.uk

providesbereavementcounselling,

informationandsupporttoanyone

whohasbeenbereaved.hasanetwork

ofbranchesacrosstheuk.

national Association of widows 3rdfloor,48Queensroad,

coventrycV13eh

Tel08458382261

[email protected]

www.nawidows.org.uk

aself-helporganisationoffering

comfortandfriendshiptowomen

whohavelostapartnerthrough

bereavement.

ruby care foundationpobox21,llandysul,walesSa399wa

[email protected]

www.rubycare.org

aninternationaleducationalcharity

dedicatedtothecareoftheterminally

ill,companionshipofthedying,

andsupportandcounsellingfor

thebereaved.



samaritans chris,pobox9090,Stirlingfk82Sa

Tel08457909090

[email protected]

www.samaritans.org.uk

provides24-hourconfidential,

non-judgementalandemotional

supportforpeopleexperiencing

feelingsofdistressordespair,including

thosewhichcouldleadtosuicide.

theserviceisprovidedbyphone,

emailorletter.

the wAy foundationSuite35,Stloyeshouse,

20StloyesStreet,bedfordMk401Zl

Tel08700113450

[email protected]

www.wayfoundation.org.uk

providesasocialandsupportnetwork

tohelpyoungwidowsandwidowers,

uptotheageof50,rebuildtheir

livesafterthedeathofapartner.

Members’childrenarealsoincluded.

winston’s wishwestmorelandhouse,

80–86bathroad,cheltenham,

GloucestershireGl537Jt

General enquiries01242515157

Tel08452030405

[email protected]

www.winstonswish.org.uk

helpsbereavedchildrenandyoung

peoplerebuildtheirlivesafterafamily

death.offerspracticalsupportand

guidancetofamilies,professionals

andanyoneconcernedabouta

grievingchild.

PrActicAL And finAnciAL suPPort

british red cross 44Moorfields,londonec2Y9al

Tel08448711111

[email protected]

www.redcross.org.uk

offersanumberofservicesfor

peoplewithadisability,includinga

medicalequipmentandatransport

loanservice.

national Association of funeral directors (nAfd)Helpline08452301343

www.nafd.org.uk

Monitorsstandardsoffuneraldirectors

intheukandgiveshelpandadviceon

whattodointheeventofadeath.

alsoadvisesonarrangingfuneralsand

hasinformationonwhatyoushould

expectfromafuneraldirector.

natural death centreinthehillhouse,watleylane,

twyford,winchesterSo211QX

Tel08712882098

[email protected]

www.naturaldeath.org.uk

aimstosupportthosedyingathome

andtheircarers,andtohelppeople

arrangeinexpensive,family-organised,

andenvironmentally-friendlyfunerals.


endoflife:thefactS/nationalorGaniSationSthatcanhelpnationalorGaniSationSthatcanhelp/endoflife:thefactS

PAin controL orgAnisAtions

the british Pain society 3rdfloor,churchillhouse,35redlion

Square,londonwc1r4SG

Tel02072697840

[email protected]

www.britishpainsociety.org

Givesinformationonpain,andpain

managementclinics.

Pain concern 1civicSquare,tranenteh331lh

Tel01875614537

Listening ear helpline08444994676

[email protected]

www.painconcern.org.uk

Givesinformationaboutpaincontrol

andsupportspeoplewithpain,and

theircarers.hasalisteningearhelpline,

whichgivesanopportunitytotalkto

anotherpersonwithpain.haspain

managementleaflets.

Pain relief foundation clinicalSciencescentre,university

hospitalaintree,lowerlane,

liverpooll97al

Tel01515295820

Email

[email protected]

www.painrelieffoundation.org.uk

cansendinformationpacksabout

pain.SendanSaeand£1,ordownload

thepackforfreefromitswebsite.

comPLEmEntAry tHErAPy orgAnisAtions

british complementary medicine Associationpobox5122,bournemouthbh80wG

Tel08453455977

[email protected]

www.bcma.co.uk

cansendalistofcomplementary

medicinepractitionerswhobelongto

complementarytherapyorganisations.

cannotadvisewhichtherapiestouse.

british Holistic medical Association (bHmA)pobox371,bridgwater,

Somersetta69bG

Tel01278722000

[email protected]

www.bhma.org

cansenddetailsofmembers,a

self-helptapelistandaquarterly

magazinecalledHolistic Health.

institute for complementary medicinecan-Mezzanine,32–36loman

Street,londonSe10eh

Tel02079227980

[email protected]

www.i-c-m.org.uk

cansendinformationonlocal

complementarytherapists.aimsto

increasethequalityofhealthby

ensuringthebestpossiblenatural

treatmentsareavailable.

92 MacMillancancerSupport/Mariecuriecancercare

nationalorGaniSationSthatcanhelp/endoflife:thefactS

usEfuL books And LEAfLEts

What to do after a death in England and Walesdepartmentofworkand

pensions,2009,free

aguidetowhatyoumustdoandthe

helpyoucangetwhensomeonein

yourfamilydies.availableonlineat

www.dwp.gov.uk/docs/dwp1027.pdf

Youcangetacopy,alongwithadvice

onbenefitsforwidowsorwidowers,

fromyourlocalJobcentreplusor

postoffice.

What to do after a death in scotland: practical advice for times of bereavement theScottishGovernment,

9thedition,2009,free

thisbookletappliestoScotlandonly

andgivesinformationaboutsomeof

thethingsthatneedtobedonewhen

someonedies.it’savailableonlineat

www.scotland.gov.uk/Resource/

Doc/277028/0083194.pdf

What to do when someone diespaulharris(editor)

which?books,2000

Givesstraightforwardandsimple

informationaboutdealingwiththe

formalitiesaftersomeonehasdied.

thebookcoversthelawandpractice

inenglandandwalesandhighlights

theimportantdifferencesthatapply

inScotland.

A Guide to Grants for Individuals

in Need 2009/10

directoryofSocialchange,

11thedition,2009

adirectoryofawiderangeofcharities

andtruststhatprovidefinancial

assistancetopeopleinneed.acopy

willbekeptinmostpubliclibraries.

thisbooklethasbeenrevisedand

editedbyMacmillancancerSupport’s

informationdevelopmentnurses,the

editorialteamandterrypriestman,

consultantclinicaloncologist.

withthanksto:drleslieallsopp,

consultantinpalliativeMedicine,Marie

curiecancercare;lindabailey,

communitynurseSpecialist,Marie

curiecancercare;JeanGordon,

clinicalServiceManager,Mariecurie

cancercare;theresaMann,palliative

careclinicalnurseSpecialist;pauline

Mcculloch,palliativecareclinical

nurseSpecialist;drkaronornadel,

StaffGradephysicianinpalliative

Medicine,Mariecuriecancercare;

andthepeopleaffectedbycancer

whoreviewedthisedition.

References

twycrossr,etal.Symptom

Management in Advanced Cancer.

4thedition.2009. palliativedrugs.comltd.

hanksG,etal.Oxford Textbook of

Palliative Medicine. 4thedition.2010.

oxforduniversitypress.

Advanced Decisions, Advanced

Statements and Living Wills.

october2007.ageconcern.

End of Life Strategy – Promoting high

quality care for adults at the end of life.

July2008.departmentofhealth.

Supportive and palliative care for

people with cancer. Part A and part B.

March2004.nationalinstitutefor

healthandclinicalexcellence(nice).


Questionsaboutlivingwithcancer?

calltheMacmillan Support Linefreeon0808 808 00 00

(Monday-friday9am-8pm).

alternatively,visitmacmillan.org.uk

hardofhearing?

usetextphone 0808 808 0121,orText Relay.

non-englishspeaker?interpretersavailable.

MacmillancancerSupport,registeredcharityinenglandandwales(261017),

Scotland(Sc039907)andtheisleofMan(604).

formoreinformationaboutMariecurieincludinghowtogeta

Mariecurienursecall0800 716 146orvisitmariecurie.org.uk

Mariecurie,registeredcharityinengland

andwales(207994)andScotland(Sc038731).

©MacmillancancerSupportandMariecuriecancercare,2011.

3rdeditionMac12149

thispaperisrecycled–pleaserecycle

nextplannedreviewin2013

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