Finding Care At the End of Life

FindingCareAttheEndofLifeDecadesago,mostpeoplediedathome,butmedicaladvanceshavechangedthat.Today,mostAmericansareinhospitalsornursinghomesattheendoftheirlives.Somepeopleenterthehospitaltogettreatedforanillness.Somemayalreadybelivinginanursinghome.Increasingly,peoplearechoosinghospicecareattheendoflife.Thereisnorightplacetodie.And,ofcourse,wherewedieisnotusuallysomethingwegettodecide.But,ifgiventhechoice,eachpersonand/orhisorherfamilyshouldconsiderwhichtypeofcaremakesthemostsense,wherethatkindofcarecanbeprovided,whetherfamilyandfriendsareavailabletohelp,and,ofcourse,howtheywillmanagethecost.HOSPITALSANDNURSINGHOMESGeorgeissixty-fourandhasahistoryofcongestiveheartfailure.Onenightheistakentothehospitalwithchestpain.Georgeandthoseclosesttohimhadpreviouslydecidedthat,nomatterwhat,thedoctorshouldtrytodoeverythingmedicallypossibletoextendGeorge'slife.So,whenGeorgeneededcare,hewenttoahospital,wheredoctorsandnursesareavailablearound-the-clock.Hospitalsofferafullrangeoftreatmentchoices,tests,andothermedicalcare.IfGeorge'sheartcontinuestofail,thehospitalintensivecareunit(ICU)orcoronarycareunit(CCU)isrightthere.Althoughhospitalshaverules,theycansometimesbeflexible.IfGeorge'sdoctorthinksheisnotrespondingtotreatmentandisdying,thefamilycanaskforrelaxedvisitinghours.IfGeorge'sfamilywantstobringpersonalitemsfromhome,theycanaskthestaffiftherearespacelimitationsorifdisinfectionisneeded.WhetherGeorgeisintheICU,CCU,oratwo-bedroom,hisfamilycanaskformoreprivacy.Inahospitalsetting,thereisalwaysmedicalstaffavailablewhoknowwhatneedstobedoneforsomeonewhoisdying.Thiscanbeveryreassuringforthatperson,aswellasforfamilyandfriends.Whopaysforcareattheendoflife?Howtopayforcareattheendoflifedependsonthetypeandplaceofcareandthekindofinsurance.Medicare,Medicaid,privatemedicalinsurance,long-termcareinsurance,VeteransHealthAdministration(ifVA-eligible),orthepatientandhisorherfamilyarecommonsourcesofpayment.SeeToLearnMoreattheendofthissectionforlinksandtelephonenumbersforservicesthatareFederalgovernmentprograms.Moreandmorepeopleareinnursinghomesattheendoflife.Inanursinghome,nursingstaffisalsoalwayspresent.Anursinghome,sometimescalledaskillednursingfacility,hasadvantagesanddisadvantagesforend-of-lifecare.Unlikeahospital,adoctorisnotinthenursinghomeallthetime.But,plansforend-of-lifecarecanbearrangedaheadoftime,sothatwhenthetimecomes,carecanbeprovidedasneededwithoutfirstconsultingadoctor.Ifthedyingpersonhaslivedinthefacilityforawhile,thestaffandfamilyhaveprobablyalreadyestablishedarelationship.Thiscanmakethecarefeelmorepersonalizedthaninahospital.Asinahospital,privacymaybeanissue.Youcanaskifarrangementscanbemadetogiveyourfamilymoretimealonewhenneeded.ThedoctorwantstomovemyrelativetotheICU.Whatcanweexpect?TheICU(intensivecareunit)andCCU(coronarycareunit)aretypesofcriticalcareunits;thatis,theyarepartsofahospitalwheremoreseriouslyillpatientscanbenefitfromspecially-trainedstaffthathavequickaccesstoadvancedequipment.ThemedicalstaffinICUsandCCUscloselymonitorandcareforasmallnumberofpatients.Doctorswhoworkintheseunitsarecalledintensivists.PatientsintheICUorCCUareoftenconnectedtomonitorsthatcheckbreathing,heartrate,pulse,bloodpressure,andoxygenlevels.AnIV(intravenous)tubemaysupplymedicines,fluids,and/ornutrition.AnothertubecalledaFoleycathetermaytakeurineoutofthebody;atubethroughthenoseorstomachareamayprovidenutritionandremoveunwantedfluids.Abreathingtubethroughthemouthortrachea(windpipe)maybeattachedtoaventilatororrespiratortohelpwithbreathing.Oftentheseexternalsupports—designedtobeusedforashorttime—willmaintainvitalfunctionswhilethebodyheals.Butsometimes,evenwithintensivecare,thebodycan'theal,andorgansstarttofail.Whenthishappens,survivalisunlikely.Inthiscase,thehealthcareteammighttalktothefamily—andthepatientifheorsheisconscious—aboutconsideringwhetherornottocontinueintensivetreatment.HOMEHomeislikelythemostfamiliarsettingforsomeonewhoneedsend-of-lifecare.Familyandfriendscancomeandgofreely.Careathomecanbeabigjobforfamilyandfriends—physically,emotionally,andfinancially.But,therearebenefitstoo,anditisoftenajobtheyarewillingtotakeon.Hiringahomenurseisanoptionforpeoplewhoneedadditionalhelp.Inordertomakecomfortcareavailableathome,youwillhavetoarrangeforservices(suchasvisitingnurses)andspecialequipment(likeahospitalbedorbedsidecommode).Healthinsurancemightonlycovertheseservicesorequipmentiftheyhavebeenorderedbyadoctor.Workwiththedoctortodecidewhatisneededtosupportcomfortcareathome.Ifthedyingpersonisreturninghomefromthehospital,sometimesahospitaldischargeplanner,oftenasocialworker,canhelpwiththeplanning.YourlocalAreaAgencyonAgingmightbeabletorecommendothersourcesofhelp(seeToLearnMoretolearnhowtocontactyourAreaAgencyonAging).Adoctorhastobeavailabletooverseethepatient'scareathome—heorshewillarrangefornewservices,adjusttreatment,andordermedicinesasneeded.Itisimportanttofollowthedoctor'splaninordertomakethedyingpersonascomfortableaspossible.Talkwiththedoctorifyouthinkatreatmentisnolongerhelping.PALLIATIVECAREANDHOSPICEDoctorscanprovidetreatmenttoseriouslyillpatientsi