Cancer Caregiving in the United States: Research, Practice, Policy PDF
Preview Cancer Caregiving in the United States: Research, Practice, Policy
Caregiving Research • Practice (cid:129) Policy RondaC.Talley,SeriesEditor Anofficialpublicationof TheRosalynnCarterInstituteforCaregiving Forfurthervolumes: http://www.springer.com/series/8274 Editorial Board JanetAbrahm,MD Dana-FarberCancerInstitute,BrooklineAvenue,Boston SamiraK.Beckwith,ACSW,CHE HopeHospice&PalliativeCare,Myers,USA KarlynnBrintzenhofeSzoc,DSW,LCSW-C CatholicUniversityofAmerica,Hyattsville,USA JackBurkhalter,PhD MemorialSloan-Kettering,NewYork,USA AnneM.Butler,RN HollyCrossHospital,SilverSpring,USA HarveyJayCohen,MD DukeUniversityMedicalCenter,Durham,USA BettyFerrell,PhD,FAAN CityofHope,Duarte,USA MarilynFrank-Stromborg,EdD NorthernIllinoisUniversity,IIIinois,USA BarbaraGiven,PhD,RN,FAAN MichiganStateUniversity,EastLansing,USA MitchGolant CancerSupportCommunity,Pasadena,USA CarolD.Goodheart,EdD RutgersUniversity,NewYork,USA MarciaGrant,RN,DNS,FAAN CityofHope,Duarte,USA SandraHaber,PhD AdeiphiUniversity,LongIsland,USA KarenHartman,BA,MSW AssociationofClinicalResearchProfessionals,Alexandria,USA iii iv EditorialBoard PamelaHinds,PhD,RN,CS St.JudeChildren’sHospital,Memphis,USA JimmieC.Holland,MD MemorialSloan-Kettering,NewYork,USA PeterS.Houts,PhD PennsylvaniaStateUniversityCollegeofMedicine,Hershey,USA BarryM.Kinzbrunner,MD,FACP VITASHealthcareCorporation,Miami,USA MargaretM.Memmott,MPH Children’sHospitalLosAngeles,LosAngeles,USA LaurelNorthouse,PhD,RN,FAAN SchoolofNursing,UniversityofMichigan,AnnArbor,USA LaurenceJ.O’Connell MinistryLeadershipCenter,Sacramento,USA ShirleyOtis-Green,LCSW CityOfHopeNationalMedicalCenter,Duarte,USA JudithRiggs,MA Alzheimer’sAssociation,Washington,DC,USA TeresaRummans,MD MayoClinic,Rochester,USA SheilaJudgeSantacroce,PhD,APRN,CPNP YaleUniversitySchoolofNursing,NewHaven,USA MartinL.Smith,STD ClevelandClinicMainCampus,Cleveland,USA GinaTesauro,MSW NationalCancerInstitute,Rockville,USA ReedThompson,MD VanderbiltUniversityMedicalCenter,Nashville,USA JeanWatson,PhD UniversityofColorado,Colorado,USA MichealA.Weitzner H.LeeMoffittCancerCenter,Tampa,USA DeaneL.Wolcott,MD UCLADeptofPsychiatryandBehavioralSchool,LosAngeles,USA Ronda C. Talley (cid:129) Ruth McCorkle Walter F. Baile Editors Cancer Caregiving in the United States Research, Practice, Policy 2123 Editors Dr.RondaC.Talley WalterF.Baile WesternKentuckyUniversity DepartmentofBehavioralScience BowlingGreen,KY,USA M.D.AndersonCancerCenter UniversityofTexas RuthMcCorkle Houston,TX,USA SchoolofNursing YaleUniversity NewHaven,CT,USA ISSN2192-340X ISSN2192-3418(electronic) ISBN978-1-4614-3153-4 ISBN978-1-4614-3154-1(eBook) DOI10.1007/978-1-4614-3154-1 SpringerNewYorkDordrechtHeidelbergLondon LibraryofCongressControlNumber:2012934957 © SpringerScience+BusinessMedia,LLC2012 Allrightsreserved.Thisworkmaynotbetranslatedorcopiedinwholeorinpartwithoutthewritten permission of the publisher (Springer Science+Business Media, LLC, 233 Spring Street, NewYork, NY10013, USA),exceptforbriefexcerptsinconnectionwithreviewsorscholarlyanalysis. Usein connectionwithanyformofinformationstorageandretrieval,electronicadaptation,computersoftware, orbysimilarordissimilarmethodologynowknownorhereafterdevelopedisforbidden. Theuseinthispublicationoftradenames,trademarks,servicemarks,andsimilarterms,eveniftheyare notidentifiedassuch,isnottobetakenasanexpressionofopinionastowhetherornottheyaresubject toproprietaryrights. Whiletheadviceandinformationinthisbookarebelievedtobetrueandaccurateatthedateofgoingto press, neithertheauthorsnortheeditorsnorthepublishercanacceptanylegalresponsibilityforany errorsoromissionsthatmaybemade.Thepublishermakesnowarranty,expressorimplied,withrespect tothematerialcontainedherein. Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Tomygrandfather,Jim,F.McCoy;myfather, JackHowardTalley;andmyKiwi,Francis MichaelFearon;andtothewomenwhocared forthemwhentheybattledcancer.My grandfathersurvivedandlivedto100years ofage.MyFatherandKiwididnot,andwe lostthemfartooyoungtothisdevastating disease.We,thecaregivers,stillmourn. RondaC.Talley Tothecaregiversofthepast,present,and future—andtomygreatestcaregiver,my mother,VirginiaMcCorkle. RuthMcCorkle ToBeth,whoisalwaystherethroughthick andthin. WalterF.Baile Foreword Fromitsinceptionin1987,theRosalynnCarterInstituteforCaregiving(RCI)has sought to bring attention to the extraordinary contributions made by caregivers to theirlovedones.Igrewupinahomethatwasregularlytransformedintoacaregiving householdwhenmembersofmyfamilybecameseriouslyill,disabledorfrailwith age,somyinterestintheissueispersonal.InmyhometownofPlains,Georgia,as inmostcommunitiesacrossourcountry, itwasexpectedthatfamilymembersand neighborswouldtakeontheresponsibilityofprovidingcarewheneverillnessstruck closetohome.Deliveringsuchcarewiththelove,respect,andattentionitdeserves is both labor-intensive and personally-demanding. Those who do so represent one of this nation’s most significant yet underappreciated assets in our health delivery system. When the RCI began, “caregiving” was found nowhere in the nation’s health lexicon. Its existence was not a secret but rather simply accepted as a fact of life. Indecidingonthedirectionandprioritiesofthenewinstitute,weconvenedgroups of family and professional caregivers from around the region to tell their personal stories. As I listened to neighbors describe caring for aged and/or chronically ill or disabled family members, I recognized that their experiences reflected mine. They testified that, while caregiving for them was full of personal meaning and significanceandcouldbeextremelyrewarding,itcouldalsobefraughtwithanxiety, stress,andfeelingsofisolation.Manyfeltunpreparedandmostwereoverwhelmed at times. A critical issue in the “field” of caregiving, I realized, was the need to betterunderstandthekindsofpoliciesandprogramsnecessarytosupportthosewho quietlyandconsistentlycareforlovedones. WiththeagingofAmerica’sBabyBoomersexpectingtodoubletheelderlypop- ulationinthenext20years,deinstitutionalizationofindividualswithchronicmental illnessesanddevelopmentaldisabilities,arisingpercentageofwomeninthework- force, smaller and more dispersed families, changes in the role of hospitals, and a rangeofotherfactors,caregivinghasbecomeoneofthemostsignificantissuesofour time.Caregivingasanareaofresearch,asafocusandconcernofpolicy-making,and asanareaofprofessionaltrainingandpracticehasreachedanewandunparalleled levelofimportanceinoursocietyandindeedglobally. ix x Foreword Aswesurveythefieldofcaregivingtoday,wenowrecognizethatitisanessential componentoflong-termcareinthecommunity, yetalsoapotentialhealthriskfor thosewhoprovidecare.Thebasicfeaturesofapublichealthapproachhaveemerged: afocusonpopulationsofcaregiversandrecipients,trackingandsurveillanceofhealth risks,understandingthefactorsassociatedwithriskstatus,andthedevelopmentand testingoftheeffectivenessofvariousinterventionstomaximizebenefitsforboththe recipientsofcareandtheirproviders. Theaccumulatedwisdomfromthisworkisrepresentedinthevolumesthatmake uptheSpringerCaregivingSeries.Thisseriespresentsabroadportraitofthenature ofcaregivingintheUnitedStatesinthetwenty-firstcentury.MostAmericanshave been,arenow,orwillbecaregivers.Withoursociety’sincreasingdemandsforcare, wecannotexpectahighqualityoflifeforourseniorsandotherslivingwithlimitations duetoillnessordisabilityunlessweunderstandandsupporttheworkofcaregivers. Withoutthoughtfulplanning, intelligentpolicies, andsensitiveinterventions, there istheriskthattheworkoffamily,paraprofessional,andprofessionalcaregiverswill becomeintolerablydifficultandburdensome.Wecannotletthishappen. This volume focuses on the caregiving demands for family and loved ones of someone diagnosed with cancer. At each stage of the disease’s progression from diagnosistotreatmenttostruggleswithrehabilitation,recuperation,remission,and potentiallyrecurrence,boththepersonwiththediagnosisandthefamilyencounter specificchallenges.Amongthese,obviouslyaretheemotionaldistressexperienced by all involved following the diagnosis and progressing across all that follows in fighting against the disease, maintnaing hope, and preparing for both the best and worstoutcomes. Partofthatdistressisthesensethataboveallonemustsparethe personwithcanceranysenseofthediagnosis’impactonlovedones.Beyonditsemo- tionaldemands,canceralsopresentscaregiverswithabroadarrayofcomprehensive caregiving. Thechapterswithinthisvolumewillinformreadersofthecomplexity ofcaregivingforthisfartooprevalentandhighlyfeareddiagnosis. Readersofthisserieswillfindhopeandevidencethatimprovedsupportforfamily andprofessionalcaregiverslieswithinourreach.Thefieldofcaregivinghasmatured and, as evidenced in these volumes, has generated rigorous and practical research findings to guide effective and enlightened policy and program options. My hope isthatthesevolumeswillplayanimportantroleindocumentingtheresearchbase, guiding practice, and moving our nation toward effective polices to support all of America’scaregivers. RosalynnCarter Contents 1 CaringforaLovedOnewithCancer:ProfessionalandFamilyIssues 1 RuthMcCorkle,RondaC.TalleyandWalterBaile PartI IssuesEffectingtheCareTriad 2 DiagnosticIssues:FamilyDynamicsandCaregiving foranIndividualwithCancer ................................... 21 DianaJ.WilkieandStuartJ.Farber 3 TheEmotionalResponsesofFamilyCaregivers:LivingwithCancer andHelpingFamiliesCope...................................... 39 RuthMcCorkleandBarbaraGiven 4 TheImpactofHealthDisparitiesonCancerCaregivers ............ 63 CarolD.Goodheart 5 Education,Training,andSupportProgramsforCaregivers ofIndividualswithCancer ...................................... 79 MyraGlajchen 6 WhatProfessionalsinHealthcareCanDo:FamilyCaregivers asMembersoftheTreatmentTeam .............................. 103 WalterF.Baile,PhyddyTacchiandJoannAaron PartII IssuesinProvidingDirectCare 7 IssuesFacedbyFamilyCaregiversinProvidingAppropriateCare forCancerPatientswithShort-Term/IntermittentCareNeeds ...... 127 RobertBergaminiandKarrieCummingsHendrickson 8 IssuesinCaregivingforCancerPatientswithLong-TermCareNeeds 145 BarryJ.Jacobs xi xii Contents 9 CaregiverEnd-of-LifeCareofthePersonwithCancer ............. 161 LodovicoBalducciandSherylLaCoursiere 10 AdvancesinCancerCareImpactingFamilialCaregiving ........... 179 VictoriaH.Raveis PartIII Cross-CuttingIssuesImpactingCaregiversandCaregiving 11 CaregiverStress:TheRoleofSpiritualityintheLives ofFamily/FriendsandProfessionalCaregiversofCancerPatients ... 201 ChristinaM.Puchalski 12 TheEconomicsofCancerCare:ImplicationsforFamilyCaregivers 229 DeeBaldwin 13 LegalIssuesinCancerCaregiving ............................... 249 MarilynFrank-StromborgandKennethR.Burns 14 CancerCaregiving:PolicyandAdvocacy ......................... 265 DaleL.Kaufman,AnnO’MaraandChristineM.Schrauf 15 CaregiversofPatientswithCancer:EthicalIssues ................. 287 MartinL.SmithandMaryElizabethPaulk PartIV Conclusions 16 CancerandCaregiving:ChangedLivesandtheFuture ofCancerCare ................................................ 315 RondaC.Talley,RuthMcCorkleandWalterF.Baile Index ............................................................ 323
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