myths about death and dying in america · 2019-08-13 · myth #1 myth: death is a medical event....
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MythsaboutDeathandDyinginAmericaADITISETHI-BROWN,MD
HOSPICEANDPALLIATIVEMEDICINEPHYSICIAN
Myth#1
Myth:DeathisaMedicalEvent.
Fact:Withorwithoutmedicalintervention,deathisaninevitablepartoflife
◦ Historically,death–likebeingborn–wasafamily,communalandreligiousevent
◦ Deathmovedoutofhomesandintomedicalinstitutionsbythe20thcentury
◦ Thisfinalstageoflifeisdistancedfromtherestofliving,fewhaveapersonalanddirectexperiencewithdyinganddeath
◦ Deathisperceivedtobeafailureofourmedicalsystem,notanaturalpartoflifeornaturalprogressionofadisease.
◦ NaturalBirthMovement//Natural,DeathPositive,orConsciousDyingMovement.
◦ Wehaveautonomy–wehaveasayinwhen,whereandhowwewilldie
Myth#2:
Myth:Deathisalwaysmiserableandpainful.
Fact:Naturaldeathisnotinherentlypainful.
◦ Dependingonthediseaseprocesssomepeoplehavepain,attimessevere
◦ Withgoodhospiceandpalliativecare,symptomsareoftenwellmanaged
◦ Deathoftenoccursbydehydration.Peoplenaturallystopeatinganddrinkinginthedyingprocess.
◦ Manydiseasesleadtoanorexiaandcachexia,canbedistressingtofamilymembers
◦ Foodandwaterarenotwithheldfromsomeonewhoisdying
Myth#3
Myth:Anticipateddeathalwaysoccursquickly.
Fact:Deathisoftentimesaprocess,thoughcanoccurrapidly
. Mostpeople(>90%)dieafteraperiodofillnesswithgradualdeterioration
StatisticsonDeathandDyinginAmerica
Numberofdeaths:2,712,630
Deathrate:844.0deathsper100,000population
Lifeexpectancy:78.8years
InfantMortalityrate:5.90deathsper1,000livebirths
◦ CDC,2015.
Numberofdeathsforleadingcausesofdeath:
Heartdisease:633,842
Cancer:595,930
Chroniclowerrespiratorydiseases:155,041
Accidents(unintentionalinjuries):146,571
Stroke(cerebrovasculardiseases):140,323
Alzheimer’sdisease:110,561
Diabetes:79,535
InfluenzaandPneumonia:57,062
Nephritis,nephroticsyndromeandnephrosis:49,959
Intentionalself-harm(suicide):44,193◦
CDC,2015.
CancerTrajectory
OrganFailureTrajectory
Myth#4
Myth:Itispossibletopredicttheexacttimingofdeath.
Fact:Itisamysteryastowhenanindividualwilltaketheirlastbreath.
Therearesomethingsthatcanguideusinmakingaprognosis
Wetalkintermsofminutestohours,hourstodays,anddaystoweeks,weekstomonths
PhysiologicChangesofImminentDeath EarlyStage◦ Bedbound
◦ Lossofinterest/abilitytoeat,drink
◦ Cognitivechanges:Increasedsleepiness/delirium
MiddleStage◦ Furtherdeclineinmentalstatus
◦ IncreasedSecretions
LateStage◦ Coma
◦ Fever
◦ Alteredrespiratorypattern
◦ Mottledextremities,Cyanosis
EarlyStageofImminentDeathFatigueandweakness
◦ Decreasedfunction,hygiene
◦ Inabilitytomovearoundinbed
◦ Inabilitytoliftheadoffpillow
Anorexia
◦ Poorintake
◦ Aspiration
◦ Weightloss,muscleandfat,notableintemples
Decreasedfluidintake
◦ Dehydration,drymucousmembranes/conjunctiva
Cognitivechanges
◦ Increasingdrowsiness
◦ Day-Nightreversal
◦ Delayedresponses,shortsentences
MiddleStageofImminentDeathDecreasedlevelofconsciousness◦ slowtoarousewithstimulation
◦ onlybriefperiodsofwakefulness
TerminalDelirium◦ Agitation,Restlessness
◦ Purposeless,repetitousmovements
Dysphagia◦ Coughing,choking
Lossofsphinctercontrol◦ Incontinenceofurineorbowels
IncreasedSecretions◦ Buildupoforalandtrachealsecretions
◦ “DeathRattle”
LateStageofImminentDeathRespiratoryDysfunction
◦ Abnormalbreathingpatterns
CardiacDysfunction
◦ ElevatedHeartRate
◦ CoolingofExtremities
◦ Mottlingoftheskin
RenalFailure
◦ Decreasedurineoutput
Coma
◦ Unresponsivetoverbalortactilestimuli
Myth#5
Myth:Hospiceisaplaceyougowhenyouareimminentlydying.
Fact:Hospiceisaphilosophyofcareandasysteminplacefordeliveringthatcare
◦ MajorityofHospicecareoccursinhomesornursingfacilities
◦ Somecommunitieshaveaninpatienthospicefacilitythathavecertaincriteriaforadmission
◦ Forindividualswithaprognosisofsixmonthsorless.
◦ Medicalcareforcomfortiscontinuedbutcurativetreatmentsarenot
◦ Goalistohelpindividualslivewelluntiltheydie
◦ Interdisciplinaryteamaddressesemotional,spiritualandphysicalaspectsofcare
Myth#6
Myth:HospiceandPalliativeCarearethesamething
Fact:Therearedistinguishingcharacteristicsofeach.
HospiceCare
Beganin1967asagrassrootscommunitymovementaimedatcaringforcancerpatients
“Curative Care” “Hospice”
TraditionalModelofHospiceCare
PalliativeCare Expandsthetraditionalmedicalgoalsofcuringillnessandprolonginglifeto:
◦ emphasizethepatient-centeredgoals
◦ reducesymptomburden
◦ enhancefunction
◦ supporthopesofpatientswithseriousillness
◦ assistwithdifficultmedicaldecisionmaking
HospicevsNonhospicepalliativecare
Hospicecare:aimedatsupportingpatientswhoforegocurativeorlife-prolongingmedicaltreatment.
Nonhospicepalliativecare:aimedatimprovingqualityoflifeforpatientswithseriousandcomplexchronicillnessinwhomprognosisisuncertainormaybemeasuredinyears.
Myth#7:
Myth:Hospicekillspeoplewithmorphine
Fact:UsingmorphinetohastendeathwouldbeeuthanasiawhichisillegalintheUS.
◦ Morphinetitratedslowlyformanagementofpainandshortnessofbreathhasnotbeenshowntohastendeath.
◦ Hospicedoesnotkillpeople.Itallowsdeathtooccurinitsnormal,naturaltimeframeinahumaneway.
◦ ThereareothermedicationsusedinHospiceforsymptommanagement.
Myth#8
◦ Myth:Talkingaboutdeathresultsindeathcomingsoonerandcausesmoredistresstothedying
◦ Fact:Talkingaboutdeathopenlycreatesopportunitiesforallinvolvedanddoesnothastendeath
◦ Mostpeoplewhoaredying,knowtheyaredying.
◦ Manyindividualsdyingtrytoprotecttheirlovedonesfrompainandanguish
◦ Talkingaboutdeathcanbringasenseofpeaceandcomforttoindividualsiftheyareopentodiscussingtheirexperience
◦ Othershavenointerestintalkingaboutdeathandfinditstressfulandanxietyprovoking
◦ Mustmeetindividualswheretheyareontheirterms.
◦ Whenisagoodtimetotalkaboutdeath?
Myth#9
◦ Myth:Weshouldshieldchildrenfromdeath.
◦ Fact:Childrenareoftenopentotalkingaboutdeathandtheylearnfromushowtocopewiththerealityofdeath.
◦ Normalizingthefactthateverythingthatisborndies,includingus,teacheschildrenaboutdeath
◦ Whatmattersmostis:Howwelisten,howwefeelwhenwespeak,andthenwhatwesay.
◦ Usesimple,direct,concretelanguage
◦ Cautionwitheuphemisms
◦ Reassurethatthepersonwhodiedlovedthechildandthatloveneverdies.
◦ Acknowledgegriefandintegratethedeathofalovedoneintoliving–keepconnectionalive
Myth#10
Myth:Whenmytimecomes,Iwillbepreparedformydeath
Fact:Majorityofpeopledonothaveadvancedirectivesinourcountry
◦ AdvanceDirectivesincludelivingwillsandappointmentofhealthcarepowerofattorney
◦ Thereismoretopreparingfordeaththanmedico-legalpaperwork.
◦ Sometraditionsevenhavepracticesfordeath.
References 1)InstituteofMedicine(US)CommitteeonCareattheEndofLife;FieldMJ,CasselCK,editors.ApproachingDeath:ImprovingCareattheEndofLife.Washington(DC):NationalAcademiesPress(US);1997.2,AProfileofDeathandDyinginAmerica.Availablefrom:https://www.ncbi.nlm.nih.gov/books/NBK233601/
2)https://www.cdc.gov/nchs/fastats/deaths.htm
3)Grauer,P,Shuster,J,Protus,BM.PalliativeCareConsultant:Areferenceguideforpalliativecare.3rded.OhioHospiceandPalliativeCareOrganization.2008,pp12-13.