Post on 24-May-2018
transcript
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.
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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.
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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.
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Mouth Care and Difficulty Swallowing
Muscleweaknessmaycauseswallowingproblemsastheillnessprogresses.Ifthepersonyouarecaringforrefusestoeatordrink,donottrytoforcethem.Thereisariskthattheymaychokeonfoodthat“goesdownthewrongway”ordevelopothercomplications,suchasaninfectionorpneumonia.Instead,allowthemtotakesmallamountsoffoodwhenevertheyshowaninterestineating.Ifyouareconcernedwiththeirlaggingappetite,youmaywishtogivethemicechipsandensurefrequentmouthcare.Thismayalleviatesomeofthesymptomsthatpreventthemfromeatingordrinking.
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Pain Control And Opiate Use
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Peoplewhoaredyingfromamalignancyoftenexperienceseverepain,sometimeschronicandsometimesacute.Thispainmayincreaseasdeathapproaches.
Painneedstobeassessedandtreatedpromptly,withthequantityandfrequencyofdosesofpainmedicationadjustedaccordingtotheintensityanddurationofthepain.Opiates(suchasmorphineandsimilardrugs)areamongthemosteffectivepainkillersandoftenprovidethebackboneofaneffectivepainmanagementprogram.Theyaresometimescombinedwithothermedicationsthatincreasetheeffectivenessofanalgesicsorarecombinedwithotherclassesofanalgesicssuchasanti-inflammatoryagents.
Nottreatingthisoftensevereandattimesincapacitatingpainmaymeanthatapersonnearingendoflifediesinpainthatcouldlikelybecontrolledorrelieved.Manypeopleareconcernedaboutthedyingpersondevelopingan“addiction”toopiateuse.Vastexperiencewithopiatesusedattheendoflifeandinpalliativecaresituationshasconsistentlyshownthatadyingpersonwillnotbecomeaddicted.Theattendingdoctorshouldbeabletodeterminewhetherornotthereisadegreeofphysicaldependenceonthedrugorwhethertolerancetoitseffectshaveoccurred.Toleranceisoftenanormalconsequenceofsustaineduseofopiates.Ifitoccursitcanbeaddressedsuccessfullybyadjustingthedosageandfrequencyofthedrug’sadministration.Withproperpaincontrolmedicationsavailable,nooneneedstosufferunnecessarilyfrompainattheendoftheirlife.
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Advance Care Planning & Substitute Health Care Decision-Making
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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.
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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.
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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.
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Other Things You Can Do To Help
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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.
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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.