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.