When Someone CloSe To You IS DYIng

What You Can ExpECt and hoW You Can hElp

Remember that preparing for a death

can be difficult. We hope the information

provided in this booklet may reduce the

amount of stress you feel by giving you

some information about what to expect.

While it is often not possible to know when

someone will die, there are some common

symptoms or indicators that may appear

in the final hours, days and even weeks

of life. Knowing what to expect may help.

Helping someone through the

last years of their life is one

of the most difficult journeys

anyone can take. As the illness

progresses, you may have to make

important decisions on behalf of

someone close to you. You may

be responsible for ensuring that

their most basic needs for respect,

dignity and physical comfort are

sustained until the end of life.

What You Can Expect And How You Can Help

1

Things A Person Nearing End of Life May Need from You .............. 2

What Happens During the Final Moments? .............. 4

Pain Control and Opiate Use ................... 10

Advance Care Planning & Substitute Health Care Decision-Making ......... 12

Other Things You Can Do To Help .................... 16

What You Can Expect And How You Can Help

2

Things A Person Nearing End of Life May Need from You

3

Some emotions are common to those who are dying. These include fear of abandonment and fear of being a burden. They may have concerns about loss of dignity and loss of control.

Some ways you can provide comfort are as follows:

• Keepcompany—talk,watchmovies,read,orjustbewiththeperson.

• Allowthemtoexpressfearsandconcernsaboutdying,suchasleavingfamilyandfriendsbehind.Bepreparedtolisten.

• Bewillingtoreminisceabouttheirlife.

• Avoidwithholdingdifficultinformation.Theymayprefertobeincludedinthesediscussions.

• Reassurethemthatyouwillhonourtheiradvancecareplanningandhealthcarechoices.

• Askifthereisanythingyoucando.

• Respecttheirneedforprivacy.

4

What Happens During The Final Moments

5

The body changes as it slows down and prepares for death, and the symptoms described in this section are a normal part of the process. Not everyone will experience some or all of these symptoms, but many people will.

Sleeping Patterns

Apersonnearingendoflifemaysleepforlongerperiodsoftimeandhavetroublewaking.Attimeslikethis,bringabooktoreadorasmallprojecttodotokeepyouoccupied.Rememberthattheymaytiremoreeasilynow.Planyourconversationsandinteractionsduringperiodswhentheyarealert.Thereisnothingwrongwithmakingsmall-talkwhentheyarealert,sincerestrictingyourselftosubjectsthatseemimportantenoughtomentionmaymeanthatyouneversayanythingatall.Itisbesttoavoidoverstimulation,asthismayexhaustbothofyou.

6

Restlessness and Agitation

Thechangesthatoccurinthebodytowardstheendoflifecanmakethedyingpersonrestlessoragitated.Sometimespeoplegrabandpullatthebedlinensorclothing.Somepeoplehallucinateandevenspeaktothesehallucinations.Thoseneardeathmightevenrefertopeoplewhohavediedinthepast.Aslongastheyarenotdistressedbythehallucination,trynottocorrectthem.Youcanalsohelpbyholdingtheirhandandspeakinginacalm,reassuringvoice.Iftheybecomedistressedoranxious,youmaywishtocontactahealthcareprofessional.Medicationsmaybegiventohelpreducethisanxietyiftheirsafetyisatriskduetoagitation.

Confusion and Forgetfulness

Fatigue,painorthespreadofthediseasemaycause“confusion”andforgetfulness.Thesecommonsymptomsareoftencausedbyside-effectsofmedicationaswellaschangesinbodychemistryinthelaststagesofanillness.Apersonnearingendoflifemaynotbeabletorecognizeyou,yourfamilyortheirsurroundings.Thiscanbedistressingforeveryone.Ifthishappens,speaktotheminacalm,reassuringvoice,remindingthemthatyouarethere.Rememberthataconfusedpersonisnot“doingthisonpurpose”andisnotdoingittoyoupersonally.Arguingwiththedyingpersonabouttheseissuescanbeupsettingandharmfultoeveryone.

7

Immobility and Involuntary Movements

Occasionalmuscletwitches,involuntarymovements,changesinheartrate,andlossofreflexesinthelegsandarmsaresignsthattheendoflifemaybenear.Relaxationofthemusclesinthepelvicareamaycauseapersonneartheendoflifetolosebladderandbowelcontrol.Tokeepthemasclean,dry,andcomfortableaspossible,placedisposablepadsunderneaththemandremovethesepadswhentheybecomesoiled.Rememberthatweaknessandimmobilityareoftenseentowardstheendoflife.

Changes in the Skin

Blueorpurplemarkingscanappearonthearms,legsandtheundersideofaperson’sbody.Theirskinmayseemcooltothetouch.Thesesymptomsareoftencausedbypoorcirculationnearthetimeofdeath.Apersonnearingendoflife,however,isprobablyunawareofthesesymptomsandwouldnotlikelyfeelcold.Thereisreallynoneedforextrablankets—infact,thesemaycausedistressbymakinghimorherfeel“helddown.”Bringamohairblanketorsomethingsimilar,ifyouhaveone,asitcanprovidewarmthwithoutextraweight.Pleasedonotuseahotwaterbottleoraheatingpad;theseitemsaredangerousandcancauseburns.

8

Changes in Breathing

Thepersonyouarecaringformaydevelopshortnessofbreathatthisstage.Noisybreathingorgurglingmaydevelop.Thisunpleasantsoundiscausedbysmallamountsofsalivacollectingatthebackofthethroatandintheupperairway.Thishappensduetomuscleweakness;thepersonisnolongerabletoswallowtheirsalivaatthisstage.Thisnoiseoftendistressesfamilymembersbutnotthedyingperson.Suchnoisesarenotasignthattheyareinpain.Youmayalsonoticeirregular,shallowbreathing,orevenbriefperiodswhenbreathingmaystop.Thesearesignsthatthebodyisslowingdown.Sometimes,oxygenisusedtoprovidesymptomrelieftoapersonattheendoflife,iftheirbloodoxygenlevelislow.Thisisnotroutinelyrequired.Narcoticscanalsobeeffectiveinalleviatingshortnessofbreath.Atropineisadrugthatcandryupthesaliva,butrememberthatadrymouth,atthisstage,canbequiteuncomfortable.

Eye Care

Towardstheendoflife,aperson’svisionisoftenreduced,makingitharderforthemtosee.Youcanoftenhelpbyturningtheirheadtowardalightsource.Leavesoft,indirectlightsonintheroom.“Artificialtears”areatypeofwidelyavailableeyedropswhichcanrelievedryeyes.Ahealthcareprofessionalorpharmacistcanteachyouhowtouseit.

9

Mouth Care and Difficulty Swallowing

Muscleweaknessmaycauseswallowingproblemsastheillnessprogresses.Ifthepersonyouarecaringforrefusestoeatordrink,donottrytoforcethem.Thereisariskthattheymaychokeonfoodthat“goesdownthewrongway”ordevelopothercomplications,suchasaninfectionorpneumonia.Instead,allowthemtotakesmallamountsoffoodwhenevertheyshowaninterestineating.Ifyouareconcernedwiththeirlaggingappetite,youmaywishtogivethemicechipsandensurefrequentmouthcare.Thismayalleviatesomeofthesymptomsthatpreventthemfromeatingordrinking.

10

Pain Control And Opiate Use

11

Peoplewhoaredyingfromamalignancyoftenexperienceseverepain,sometimeschronicandsometimesacute.Thispainmayincreaseasdeathapproaches.

Painneedstobeassessedandtreatedpromptly,withthequantityandfrequencyofdosesofpainmedicationadjustedaccordingtotheintensityanddurationofthepain.Opiates(suchasmorphineandsimilardrugs)areamongthemosteffectivepainkillersandoftenprovidethebackboneofaneffectivepainmanagementprogram.Theyaresometimescombinedwithothermedicationsthatincreasetheeffectivenessofanalgesicsorarecombinedwithotherclassesofanalgesicssuchasanti-inflammatoryagents.

Nottreatingthisoftensevereandattimesincapacitatingpainmaymeanthatapersonnearingendoflifediesinpainthatcouldlikelybecontrolledorrelieved.Manypeopleareconcernedaboutthedyingpersondevelopingan“addiction”toopiateuse.Vastexperiencewithopiatesusedattheendoflifeandinpalliativecaresituationshasconsistentlyshownthatadyingpersonwillnotbecomeaddicted.Theattendingdoctorshouldbeabletodeterminewhetherornotthereisadegreeofphysicaldependenceonthedrugorwhethertolerancetoitseffectshaveoccurred.Toleranceisoftenanormalconsequenceofsustaineduseofopiates.Ifitoccursitcanbeaddressedsuccessfullybyadjustingthedosageandfrequencyofthedrug’sadministration.Withproperpaincontrolmedicationsavailable,nooneneedstosufferunnecessarilyfrompainattheendoftheirlife.

12

Advance Care Planning & Substitute Health Care Decision-Making

13

What is it?

Advancecareplanningistheprocessofplanningforfuturehealthcarechoices.Itspurposeistoallowpeopletomakechoicesaboutfuturetreatmentandcareshouldatimeoccurwhentheybecomeincapableofmakingtheirowndecisionsandmayneedtorelyonsomeoneelse(asubstitutedecision-maker)orawrittendocument(anadvancecareplanordirective)tocommunicatetheirwishes.

Why do it?

Increasingly,peoplewanttomaketheirtreatmentchoicesknown.Theywantthetreatmentthattheyreceivetoreflecttheirvaluesandbeliefsaboutwhatmakeslifeworthwhileandtheywanttobeabletospecifyunderwhatcircumstancestheywouldnotwanttohavetheirlifeprolonged.

If there is an advance care plan, is this a consent for treatment?

NO.Itisimportanttorememberthattheexistenceofanadvancecareplan,whateverformittakes,isNOTaconsentfortreatment.Beforeprovidingcareandtreatment,thehealthprovidermustgetaconsent.

14

Do I have to write it down?

Inmanyprovinces/territories,wishesexpressedverballyareaslegalaswishesexpressedinadocumentformofadvancecareplan.

What are the types of planning?

Thereisacommondistinctionmadebetween:

• awrittenadvancecareplanthatnamesapersontobethesubstitutedecision-makerforapatientwhentheybecomeincapable(oftencalledaproxydirective),and

• awrittenadvancecareplanthatsetsoutinstructionsforhealthcaredecisions(oftencalledaninstructionaldirective).

MostofthelegislationacrossCanadaallowsforboth–adirectivethatnamesaproxy(calledbydifferentnames)andmayalsoincludewishesforfuturehealthcare,asexpressedbythemakerofthedirectivewhilementallycapable.

15

Where can I find out more about Advance Care Planning in my jurisdiction?

Thelawsaboutadvancecareplanningandsubstitutehealthcaredecisionmakingaredifferentacrossthecountry.Youneedtolooktothelegislativeschemeintheprovinceorterritoryinwhichyoulive.Lawsalsomaychangefromtimetotime.Anupdatedlistforeachprovinceorterritoryisavailableatwww.nicenet.ca.

Also,looktotheAdvocacyCentrefortheElderlyatwww.advocacycentreelderly.organdtheCanadianCentreforElderLawStudiesatwww.ccels.caformoredetailedinformationabouthowadvancecareplanningworksacrossthecountry.

16

Other Things You Can Do To Help

17

An impending death impacts many people. Here is some additional information that may help you and your family cope.

Make Funeral Arrangements

Ifyouhavenotyetmadefuneralarrangements,itmaybeappropriatetostartasyounoticethephysicalchangesdescribedinthisbrochure.Makealistofeveryonewhoneedstobecalledandassigndifferentpeopletocalltheseindividuals.Discussarrangementswithotherfamilymembersand/orafuneraldirector.Yourfuneralhomewillhelpyouwiththearrangementsyoumustmake.

Talk About It

Manypeopleareuncomfortablediscussingdeath.Alackofopenandculturallysensitivediscussionmaymeanthatthedyingperson’schoicesforlifesupportandendoflifecareareignored.Althoughhealthcareprovidersmaybeabletoestimatehowmuchtimesomeonehas,theymightbehesitanttodosooutofconcernforgivingfalsehopeordestroyingaperson’shope.

18

Physio and Occupational Therapy for a Person Nearing the End of Life

Ifadyingpersoniscapable,engageinactivitieswithpetsandhorticulture,listentomusicormakeuseofmusictherapy,participateincreativecraftsgroups,playboardandcardgames,orparticipateinreligiousactivitiesandprograms.Physiotherapyinterventionforpalliativecarefocusesonpaincontrolandoptimizingsafetyandmobility.Anoccupationaltherapistcanassessneeds,andmakerecommendationsthatcaneaseactivitiesofdailyliving,protectskinorimproveaccesstosurroundings.

Care for Yourself

Atthisdifficulttime,itmayseemnaturaltoabandonconcernforyourselfandlookonlytotheneedsofothers.However,youfacethedangerofdepletingyourselfsobadlythatyoucannolongerhelp.Pleaseremembertotakeshortbreaks,eatandrestatregularintervalsandwalkeachdaysothatyoukeepupyourstrength.Sharetheburdenwhereverpossible.Lethealthcareprofessionalsandsupportersknowhowtheycanhelpyoutoo.

When Someone CloSe To You IS DYIng

What You Can ExpECt and hoW You Can hElp

Remember that preparing for a death

can be difficult. We hope the information

provided in this booklet may reduce the

amount of stress you feel by giving you

some information about what to expect.

While it is often not possible to know when

someone will die, there are some common

symptoms or indicators that may appear

in the final hours, days and even weeks

of life. Knowing what to expect may help.