08

CompiledbyRevaM.Greenberg,EdDNovember2009

Availableonlineat:www.westchesterpartnership.org

BookEnds:ASelectedAnnotatedBibliography

MISSIONSTATEMENTTheCollaborativeforEndofLifeCarecreates,leadsandsupportseducationalandresearchinitiativesinpalliativecare,includingchronic,hospiceandend‐of‐lifecare,forprofessionals,caregivers,individualsandfamiliesacrossmultipledeliverysystems.Itprovidesqualityinter‐professionallearningthatfostersunderstandingofhumanproblemsandethicalconcernswithinaframeworkofacompassionatecontinuumofcare.Workingwithdiversepartnerswhoshareresourcesandbuildcommunityadvocacycapacity,theCollaborativepresentsannualconferencesandsatelliteprogramsforprovidersandforthoseinneedofend‐of‐lifecareservicesinWestchesterCountyandtheNewYorkStateSouthernRegion.

Palliativecareisanoptionthatfocusesonimprovingthequalityoflifeforindividualsandfamiliesfacingchronicandlife‐limitingillnesses.

1

Liveasifyouweretodietomorrow.Learnasifyouweretoliveforever.MahatmaGandhiINTERDISCIPLINARYPERSPECTIVESAltilioT.PainandSymptomManagement:Clinical,PolicyandPoliticalPerspectives.JPsychosocialOncol.2006;24,1:65‐79.Duringthelastdecade,theprevalenceofcancerpainandtherealityofundertreatmenthavebeendocumentedinbothadultsandchildren.TerryAltiliocallsforpsychosocialclinicianstoadvocate,inaninformedway,onthepolicy,legislativeandpoliticalissuesthatflourisharoundthetreatmentofpain.AltilioT.PainandSymptomManagement,AnEssentialWork.In:BerzoffJ,&SilvermanP,eds.LivingwithDying:AHandbookforEnd­of­LifeHealthcareProfessionals.NewYork:ColumbiaUniversityPress,2004:380‐408.Thischapterdiscussesacomprehensive,individualizedapproachtopainandsymptommanagementwhichrespectstheimpactofapersonandfamily'spastexperience,presentrealitiesandperceptions.Altilioemphasizesthatinterventionshavethepotentialtoaffectmood,functionandqualityoflife.ArièsP.TheHourOfOurDeath.WeaverH,trans.NewYork:AlfredA.Knopf,1981.PhilippeAriès’slandmarkhistoryofWesternman’schangingattitudestowarddeathfromtheirrootsintheGreco‐RomanworldtoearliestChristiantimesanduptothetwentiethcentury.ThelastsectionscoverthemodernphenomenonofTheInvisibleDeath…DeathDenied.IllustrationstakeusfromtheAppianWayinRometotheGreenwoodCemeteryinBrooklyn.Abigbookpackedwithfascinatinginformation.BerzoffJ,SilvermanP,eds.LivingWithDying.NewYork:ColumbiaUniversityPress,2004.A900‐pagecompendiumspecificallyeditedforsocialworkinpalliativeandend‐of‐lifecare.Thetextbookisgroundedinacase‐basedapproachandincludesresearch,innovativetheory,andabroadrangeofskills,practiceandpersonalnarratives.AchapterisdevotedtoLGBTpsychosocialconcerns.BombaP.MedicalOrdersforLife‐SustainingTreatment(MOLST):AParadigmShiftinAdvanceCarePlanning.HealthLawJournaloftheHealthLawSectionoftheNewYorkStateBarAssociation.2006;11:3,39‐51.PatriciaBomba,MDpresentsacomprehensiveviewofhonoringpatientpreferencesasarequisitefor“providingqualityend‐of‐lifecare,consistentwiththeindividual’svaluesandbeliefs,basedoninformedmedicaldecision‐makingandevidence‐basedmedicine.”MOLSTwascreatedtorealizethefinalchapteroflife.ThearticlemakesthecaseforMOLSTandelaboratesonitscontentandimplementation.TheMOLSTformisincluded.BrennanM,KarpiakS,ShippyA,CantorM,eds.OlderAdultsWithHIV:AnIn­DepthExaminationofanEmergingPopulation.NewYork:NovaPublishers:2009.WhilethefirstdecadeoftheHIV/AIDSepidemicwasdefinedbyyounggaymendying,theseconddecadesawpeopleofcolorandwomenbecomethemajorityofpeopleinfectedwithHIV.Inthisthirddecade,medicationshavemadeitachronicmanageabledisease.OlderadultswillaccountforoverhalfofthoselivingwithHIVinthenexttenyears.Thisvolumebringstogetheracomprehensiveknowledge‐baseofthisvulnerablegroup’scharacteristicsandneeds.BrodyJ.JaneBrody’sGuidetotheGreatBeyond.NewYork:RandomHouse,2009.Aput‐your‐affairs‐in‐orderroadmapauthoredbythewell‐knownNewYorkTimeshealthcolumnistJaneBrody.Inherinformative,pragmaticstyleBrodyaddressesatopicmanypeoplewanttoavoid…preparingforend‐of‐life.Topicsincludeemotional,spiritualandpracticalconcernsfromlivingtogrieving.ByockI.DyingWell.TheProspectofGrowthattheEndofLife.NewYork:RiverheadBooks,1997.Recountingtherealexperiencesoftherealpeoplewithwhomhehasworked,IraByock,MDdocumentsthehumancapacitytoexperiencemeaninginthemidstoftragedy,pain,conflictanddying.Hebelievesthatdyingdoesnothavetobeagonizing.Despitethistherearemanypeopleandfamilieswhosuffertangiblefearsrelatedtohowandwhentheywilldie—abandonment,pain,becomingundignified,beingaburden.TheQ&Aappendixformatsuggestsvaluableapproaches.

2

CallahanD.TheTroubledDreamofLife:LivingWithMortality.NewYork:SimonandSchuster,1993.DistinguishedmedicalethicistDanielCallahantalksaboutthewayweviewdeath,careofthedyingandthecriticallyillinAmericatoday.Callahanposesmanychallengingquestionscentraltothegiventhatdeathisinescapable.Heaskshowcanindividualsandsocietybecomecomfortabletalkingaboutthelegalandmoralissuessurroundingit?Nopat,reassuringanswersbutstimulatingthoughtsforprivateandpublicdiscussions.ChenP.FinalExam.ASurgeon’sReflectiononMortality.NewYork:VintageBooks,2008.“Ourprofessionalfearandaversiontodyingisthemostdifficult—andmostfundamentalhuman‐obstacleinchangingend‐of‐lifecare.”Dr.PaulineChenchroniclesaninsider’sviewofthekeyeventsthroughwhichmedicalstudentsandresidentslearnaboutandencounterdeaththatultimatelyleadsthemtodepersonalizeit.ChenperiodicallywritesarticlesfortheNewYorkTimes.ChochinoveH,BreitbartW,eds.HandbookofPsychiatryinPalliativeMedicine.2nded.NewYork:OxfordUniversityPress,2009.Thetwoeditors,majorcontributorstotheoriginalliteratureinthefield,havewrittenmuchofthematerialinthistext.Thebook'stwenty‐eightchapterscoverallthecommonpsychiatriccomplicationsseenintheterminallyill.Thetextbringstogetherup‐to‐date,comprehensive,andauthoritativeaccountscoveringarangeofissuesattheinterfaceofpsychiatryandpalliativemedicine.CliftE.TwoWeeksofLife.AMemoirofLove,DeathandPolitics.NewYork:BasicBooks,2008.WhileherjournalisthusbandTomspenthislasttwoweeksoflifewithhomehospice,TerriSchiavowasdyingwhilethenationwatchedherenterherfinaldays.Sameending—verydifferentexperiences.EleanorCliftwritesaboutdyinginAmericaandthechoiceswemake.TomCliftwroteabouthiskidneycancer.ColbyW.Unplugged.ReclaimingOurRighttoDieinAmerica.NewYork:AmericanManagementAssociation,2006.NancyCruzan’slawyer,WilliamColby,recountsTerrySchiavo’swrenchinglastmonths.Heaskswhymodernend‐of‐lifemedical,legalandethicalissueshavebecomesochallengingandpositsthatlettingnaturetakeitscourseisnolongeralwaysagood,orpossible,option.Colbyaskspeopleofallages“Whatwouldyouwantifyouwereinher[TerriSchiavo]shoes.Don’twealloweittothosewelovetospendthetimeneededtofacethesequestionsheadonbeforeit’stoolate?”ColemanP.Corpses,Coffins,andCrypts.AHistoryofBurial.NewYork:HenryHoltandCompany,1997.Afascinatingtourofthecustoms,rites,rituals,realitiesandmysteriesofdeathanddyingthroughvarioustimesandcultures.Photosandhistoricalillustrations,anappendedglossaryandanexcellentbibliographyaddtothisimportantsubject.Thisreadablebookfillsthenichebetweenyoungadultandadultnon‐fiction.DasguptaS,HurstM,eds.StoriesofIllnessandHealing:WomenandTheirBodies.Kent,OH:KentStatePublishing,2007.Thiscollectionputsavarietyofwomen’sillnessnarrativesalongsideanalyticessaysfromprominentscholarsinthefield.Theessaysrespondtothethemesandissuesraisedbythenarratives.DokaK.CounselingIndividualswithLife­ThreateningIllness.NewYork:SpringPublishingCompany,2009.Life‐threateningillnessisapsychological,social,andspiritualcrisisaswellasamedicalcrisis.Seriousillnessaffectsthefamilyandthepatient.Thebook’stwomajorprinciplesarethatcareinlife‐threateningillnessmustbeholistic,anditmustbefamilycentered.KennethDokapresentsaninsightful,comprehensiveguideforcounselors,socialworkersandhealthcareprofessionals.

DokaK,withTucciA.DiversityandEnd­of­LifeCare(LivingWithGrief).Washington,DC:TheHospiceFoundationofAmerica,2009.Thisbookexaminesthewaysthatculturaldiversityinfluencesend‐of‐lifecare.Itpresentsamultifacetedviewofdiversityincludingraceandethnicity,socialclass,spirituality,sexualorientationanddisabilities.Expertswithinthefieldauthortheseventeenchapters.TheforewordisbyRichardPayne,MD.

3

DoukasJ,ReichelW,eds.PlanningForUncertainty.LivingWillsandOtherAdvanceDirectivesForYourFamily.Baltimore:JohnsHopkinsPress,2007.InQ&AformatthesefamilyphysiciansexplainwhyandhowindividualsshouldprepareAdvanceDirectives.Theyguidereadersthroughtheprocessofcommunicatingpersonalwishesiffacingprolongedincapacityorfacingend‐of‐life.Theimportanceofformalizingyourwisheswhileingoodhealthisstressed.TheAppendixincludesresourcesandweblinkstoobtaintheappropriatelegalformsinallfiftystates.FadimanA.TheSpiritCatchesYouandYouFallDown.NewYork:Farrar,StrausandGiroux,1998.Lia,thethree‐month‐olddaughterofaHmongrefugeefamilyfromLaos,wasdiagnosedwithepilepsyatasmallcountyhospitalinCalifornia.Intheaward‐winningbook,AnneFadimanexploresthetragicoutcomeresultingfromaclashbetweenWesternmedicineandanimmigrantculture.Thiseye‐opening,rivitingmedicalanthropologystoryisamust‐read,notonlyformedicalprofessionalsbutalsoforanyoneinterestedinculturaldifferencesinourevershrinkingglobalworld.FerrellB,CoyleN.TheNatureofSufferingandtheGoalsofNursing.NewYork:OxfordUniversityPress,2008.Thisslimvolumegivesvoicetothesufferingthatpatients,families,colleaguesandnurseswitnessandexperience.Acriticallyacclaimedbookthatisrelevanttoabroadrangeofspecialtiesandinterests.FieldM,BedmanR,eds.WhenChildrenDie:ImprovingPalliativeandEnd­of­LifeCareforChildrenandTheirFamilies.Washington,DC:NationalAcademyPress,2003.Workingwithdyingchildrenisapotentiallydifficulttopicforhealthcareprofessionals.Thisbookacknowledgesanddiscussesthechallenges.Compellingexperiencesdocumenthowchildhoodlife‐threateningillnesseshavebeentreatedintheU.S.healthcaresystem.Suggestionsonwaystoimprovecareandideasforfutureresearcharerecommended.FigueroaL.GaywomanfightsoverhospitalvisitationrightsintheMiamicourt.TheMiamiHerald.February2,2009:www.miamiherald.com/277/story/892447.htmlAgaywoman,notallowedtovisitherdyingpartner,hopesafederaljudgewillallowherclaimstogototrial.FinsJ.APalliativeEthicofCare:ClinicalWisdomatLife’sEnd.Sudbury,MA:JonesandBartlettPublishers,2006.Amonographonethicsandatextbooktoeducatephysicians‐in‐trainingandpractionersbyJosephFins,MDlinksethicaltheorywithclinicalpracticeincaringfortheterminallyillpatient.Astructuredmethodofgoalsettingtouseinclinicalworkandresearchhasbeendeveloped.Thecenterpieceofthismethod,TheGoalsofCareAssessmentTool(GCAT)isintheAppendix.“Notalldeathscanbegoodonesbutmostcanbebetter.”“Eachofusplaysapartofalargerprocess.”FollandS,GoodmanA,StanoM.TheEconomicsofHealthandHealthCare.6thed.UpperSaddleRiver,NJ:PearsonPrenticeHall,2009.Healthcareeconomicsthroughthelensofcoreeconomicthemesratherthanthroughconceptsuniquetothehealthcareeconomy.Thissixtheditionupdatescontenttoreflectcurrentchangesinthehealthpolicyarena.Freeheld[DVD].Informationaboutthefilmatwww.fr.com/film/html.FilmchroniclesLaurelHester’sstruggletotransferherearnedpensiontoherdomesticpartner.GilbertS.Death’sDoor.ModernDyingandtheWaysWeGrieve.NewYork:W.W.Norton,2006.DeathbecamearealityforpoetSandraGilbertwhenherhusbandofthirty‐threeyearsunexpectedlydied.Shehandleditinawaysheknowsbest…bydrawingonworksbyscholars,poets,writersandartistswhohavearticulatedtheirfears,hopesandmemoriessurroundingdeathandhowpeoplehaveconfrontedmortality.Welearnabout“thedistinctivelymodernwaysofdying,mourning,andmemorializingthathaveevolvedinthecourseofthelastcentury.”GlajchenM,PortenoyR.TheCaregiverResourceDirectory.3rded.ContinuumHealthPartners,Inc.,2003‐2005.Acomprehensive,reader‐friendlyguideforfamilycaregiversand“…anyonewhoprovidesanytypeofphysicaland/oremotionalcareforanillordisabledlovedoneathome.”TheDirectoryisavailableatthewebsiteoftheDepartmentofPainMedicine&PalliativeCare,BethIsraelMedicalCenter,NewYork.www.StopPain.org/

4

GroopmanJ.TheAnatomyofHope.NewYork:RandomHouse,2004.Inhissearchforhowpatientsfindhopeinthefaceofsignificanttragedyand/ordiagnosis,JeromeGroopman,MDdrawsonhisthirtyyearlearningjourneyinclinicalpractice.“Hopeisasvitaltoourlivesastheveryoxygenthatwebreathe”andhealthcareprofessionals,familiesandpatientsshouldalwaysrememberthis.GutheilI,HeymanJ.TheyDon’tWanttoHearUs:HispanicEldersandAdultChildrenSpeakAboutEnd‐Of‐LifePlanning.JournalofSocialWorkinEnd­of­Life&PalliativeCare.2006;2,1:55‐70.Communicationaboutend‐of‐lifeplanningwasfoundtobeofparticularimportancetoeldersandadultchildren.Beingaburdenwasafrequentissue.Asignificantchallengeforbothparentsandchildrenwasareluctancetoraisethisuncomfortabletopicandthenbegintheconversations.SocialworkershavethenecessaryskillstohelpHispanicfamiliestoovercometheconversationbarriers.HanksG,CharnyN,ChristakisN,FallonM,KassaS,PortenoyR,eds.OxfordTextbookofPalliativeMedicine.4thed.NewYork:OxfordUniversityPress,2009.Thisupdatededitionjoinsitspredecessorasthedefinitive,goldstandardtextbookonpalliativecare.Itisusedworldwidebyawiderangeofprofessionalsinvolvedinthecareofterminallyillpatients,orchronic,progressiveconditions.Alloftheeditorsareprominentleadersintheirfields.HardwigJ.GoingtoMeetDeath.TheArtofDyingintheEarlyPartoftheTwenty‐FirstCentury.HastingsCenterReport;2009;39,4:37‐45.Hardwigpositsthatcurrentmedicaltechnologyrequiresustorethinkhowandwhenisthetimetodie.Thisthought‐provokingandprobablycontroversial,articlebroadensthedebateonend‐of‐life.HooymanN,KramerB.LivingThroughLoss.InterventionsAcrosstheLifeSpan.NewYork:ColumbiaUniversityPress,2006.Thisvolumeisofparticularinteresttonurses.Itidentifiesthemanywaysinwhichpeopleexperiencelossoverthecourseoflifeandthendiscussestheinterventionsateachstageoflife.Husserl E. Ideas:GeneralIntroductiontoPurePhenomenology. Gibson WRB, trans. New York: Collier Books, 1962. (Original work published in 1913). ThisbookincludestheclassicfirststatementwrittenbyEdmundHusserlandisonethatisexciting,inspiringandseminal,havingservedgenerationsofscholarsacrossthecompletespectrumofdisciplines. HydénL.Health,IllnessandCulture.BrokenNarratives.NewYork:Routledge,2008.Thesenarrativesareavariedcollectionofstudiesandessaysontheinterrelationshipamongillness,disability,health,societyandculture.Thenarrativesrepresentandaddtothisnewmultidisciplinaryfield.JenningsB,KaebnickG,MurrayT, eds. ImprovingEndof LifeCare.WhyHas ItBeenSoDifficult?AHastingsCenterSpecialReport,2005.Theessays,byprominentthinkersinthefield,exploretheconceptualandsystematicflawsinendoflifereformsincethemid‐1970s.Theyoffersuggestionsabouthowtobridgethegapthatliesbetweenthelegalandethicalframeworknowwidelyused,andtherealworldofon‐the‐groundcare.TheJenningsandMurrayessaybringstogethermanyofthethemesidentifiedinpapers.JenningsB,RyndesT,D’OnofrioC,BailyMA.AccesstoHospiceCare.ExpandingBoundaries,OvercomingBarriers.ASpecialSupplementtotheHastingsCenterReport.2003:S3‐S59.ManyAmericansapproachdeathwithoutadequatemedical,nursing,social,andspiritualsupportanddieunnecessary“baddeaths.”TheleadarticlebyBruceJenningsetal.isacomprehensivesummaryofthedeliberationsandconclusionsofanationaltaskforceonhospiceandpalliativecare.Essaysbyotherdistinguishedauthoritiesreflecttheinsightsandexpertiseofthesetaskforcemembers.

5

JohnsonM.TheDeadBeat.LostSouls,LuckyStiffs,andthePerversePleasuresofObituaries.NewYork:HarperCollins,2006.Obituariesaresomeofthebest‐readnewspaperpages.Filledwiththelivesoftherich,thefamousandeverydayfolks,awell‐researchedobitisnotonlyavitalhistoricalrecordbutalsofirst‐ratereading.WithareverentlevelofhumorMarilynJohnsonreaffirmslifeasmuchasshetalksaboutdeath. KleinmanA.TheIllnessNarratives:Suffering,Healing,andtheHumanCondition.NewYork:BasicBooks,1988.HarvardMedicalSchoolpsychiatrist,ArthurKleinman,MSpositsthatdoctorsmustconsiderthepsychologicalandsocialaspectsofchronicillnessalongwiththemedicalconditionstheytreat.Heseesaneedtoreformtoday’smedical‐caresystemtobetterbridgethegapthattoooftenexistsbetweenpatientanddoctor. Kubler‐RossE.OnDeathandDying.NewYork:Touchstone,1997.Thepioneerinthefieldofdeathanddying,ElizabethKübler‐Ross,MDexploreshernowiconicfivestagesofdeath:denialandisolation,anger,bargaining,depression,andacceptance.Throughsampleinterviewsandconversations,shegivesthereaderanunderstandingofhowimminentdeathaffectsthepatient,theprofessionalswhoservethatpatientandthepatient'sfamily.Thebookwasoriginallypublishedin1969.KuschnerH.WhenBadThingsHappentoGoodPeople.NewYork:AnchorBooks,1981.WhenhissonAarondiedatage14ofprogeria,rapidaging,RabbiHaroldKuschnerstruggledtounderstandtheunfairdistributionofsufferingintheworldorwhybadthingshappentogoodpeople.CanGodpreventcalamity?Misfortunes,Kushnerconcludes,“arecausedbybadluckorbadpeopleandaresimplyaninevitableconsequenceofourbeingmortalandlivinginaworldofinflexiblenaturallaw.”TurningtoGodcangiveusthestrengthtoovercomelossandgoonlivingpositiveandconstructivelives.LevineC,ed.AlwaysOnCall.WhenIllnessTurnsFamiliesIntoCaregivers.2nded.Nashville,Tennessee:VanderbiltUniversityPress,2004.Powerfulnarrativeexperiencesofcaregivingspousesandchildrenaretranslatedintousefuladviceforanyonewhoeverisorwillbeafamilycaregiver.Aformercaregiverandcurrenthealthcareadvocate,CarolLevineandtheotherauthorscovertheessentialdimensionsofthisrewarding,butisolating,challengingandstressfulrole.Policyandadvocacysuggestionsenrichthehealth‐caredebate.LivingWithGriefSeries.HospiceFoundationofAmerica:Washington,DC,1990andongoing.DVDs/bookscoveringHFA’steleconferenceandspecialreports.Seriesincludes:African‐American;Diversity;ChildrenandAdolescents;BeforeandAftertheDeath;PainManagement;EthicalDilemmas;Alzheimer’sDisease;LossinLaterLife;CaregivingandLoss;AtWork,AtSchool,AtWorship;WhenIllnessisProlonged.Additionalmaterialsaddedcontinually.www.hospicefoundation.org/MartensenR.ALifeWorthLiving.ADoctor’sReflectionsonIllnessinaHigh­TechEra.NewYork:Farrar,StrausandGiroux.2008.Physician,historian,bioethicistRobertMartensendetailstreatmentscenarios,dailyrealitiesandethicaldimensionsoftoday’smedicalcare.HediscussesICUs,medicalchoices,sickchildren,peoplewithlimitedinnatecapacityorseriousmentalillnessandpeoplelivingonthemargins.Martensentriestobalancethereflectionsofpatients,familiesandfriendswithhisprescriptiveadviceonwhatisalifeworthliving.MorrisseyMB,JenningsB.SocialEcologyofHealthModelinEnd‐of‐LifeDecision‐Making:IstheLawTherapeutic?NYSBAHealthLawJournal.SpecialEdition:SelectedTopicsinLong­TermCareLaw.Albany,NewYork:NewYorkStateBarAssociation,2006,Winter2006,Vol.11,No.1,51‐60.CurrentNewYorkStateend‐of‐lifedecision‐makinglawhasshortcomingsinfourmajoraspectsofthelegalframework:excessiverationalism,excessiveindividualism,amiddleclassculturalbias,andamisdiagnosisoftheproblem.Theauthorsconclude“Centraltoend‐of‐lifecarearetwocoreprinciplesthatappearagainandagainintheaboveliterature,bothinthequantitativestudiesandthequalitativeresearch—thevalueofcommunicationandrelationships.”Theheartofthemattermustbeviewedasrelationalend‐of‐lifedecision‐making.

6

MoyersB.HealingandtheMind.NewYork:Doubleday,1993.BillMoyersdialogueswithsixteendoctorsandscientistsabouttheirviewsonthemeaningofsickness,healthandhealing.AmongthegreatvarietyoftopicstheycoveristhefusionofcurrentWesternpracticeswithtraditionalChinesemedicine.Availableasanaudiodownloadfromwww.audible.com/MyersM,FineC.TouchedbySuicide.HopeandHealingAfterLoss.NewYork:Gotham,2006.Therearetensofthousandsofsuicidesayear(whichindirectlyaffectanotherfivemillionAmericans).Bycombiningtheexperiencesandperspectivesofaleadingclinicianinthefield,psychiatristMyers,andsurvivorFinewegetarangeofpracticaladviceandguidancetothesurvivorsandtothosewhoworkwiththem.NulandS.HowWeDie.ReflectionsonLife’sFinalChapter.NewYork:Knopf,1994.SherwinNuland,MDpositsthattheprocessofdyinginourmodernworldhidesdeathfromview.Noneofusseemspsychologicallyabletodealwiththethoughtofpermanentnothingness.Byandlarge,deathisamessybusinessandpursuingtreatmentinfaceoffutilityisadisservicetothepatientandfamily.Whennaturehasitsjobtodo“Thedignitythatweseekindyingmustbefoundinthedignityinwhichwelivedourlives.”Parker‐PopeT.TreatingDementia,butOverlookingItsPhysicalToll.NewYorkTimes.Tuesday,October20,2009:D5.Dementiaisadiseaseofthemindandaprogressive,terminalphysicalillness.Manyofthesepatients,neartheendoflife,aresubjectedtoaggressivetreatments.Alargepartoftheproblemisthatthesepatientsareunabletomaketheirwishesknownandfamilymembersdonotwanttobeseenasabandoningalovedone.GregSachsMDcallsformorediscussionsofpalliativecare.“Wearenottalkingaboutaggressivecareversusnocare.Palliativecareisaggressive,andfocusedonsymptommanagementandsupportofthepatientandfamily.”PaysonR.Autopsy:LearningFromtheDead.AClevelandClinicGuide.Cleveland:ClevelandClinicPress,2006.Autopsieshavebeenaroundforcenturiesanddespitearecentdeclinetheirvalueisconsiderable.ThisvaluableillustratedGuidegivesfamilieswhofacehavingtomakeyes/noautopsydecisionsindispensableinformation.PuchalskiC,FerrellG,ViraniR,etal.ImprovingtheQualityofSpiritualCareasaDimensionofPalliativeCare:TheReportoftheConsensusConference.JournalofPalliativeMedicine.2009;12:885‐904.TheConferencewasbasedonthebeliefthatspiritualcareisafundamentalcomponentofqualitypalliativecare.Initsreport,practicalrecommendationsareprovidedfortheimplementationofspiritualcareinpalliative,hospice,hospital,long‐term,andotherclinicalsettings.Board‐certifiedchaplainswouldbeincludedinthedecision‐makingteam.RemenR.KitchenTableWisdom.StoriesThatHeal.NewYork:RiverheadTrade,10thanniversaryed.,2006.Peoplewithlife‐threateningillnessescometocancerphysician/Crohn’sDiseasesurvivorRachelRemenbecausetheyseekmeaningintheirlives.Thesimple,yetpowerfulstoriesofreal‐lifecasescanhelphealdespairandlonelinessandconnectusmoredeeplytolife.Thewisdomthatspringsfromthestoriesspeakstothingswecannotmeasureandthatmayturnouttobejustthosethatnourishandenhanceourlives.RinpocheS.TheTibetanBookofLivingandDying.NewYork:HarperOne,2002.ThisworldacclaimedbestsellerofTibetanBuddhistteachingswaswrittenasaguideforlifeanddeath,aworkofreferenceandasourceofsacredinspiration.ItpresentsthetraditioninwaysrelevanttotheneedsofmodernmenandwomenintheWestandEast.SogyalRinpocheexploresthefourcontinuouslyinterlinkedrealities(bardos):life,dyinganddeath,afterdeathandrebirth.Usedinmanycolleges,andbynurses,doctorsandotherhealthcareprofessionals.DalaiLamaForward.VideoteachingsbySogyalRinpocheareatwww.rigpa.org/SaundersC,ClarkD.CicelySaunders.SelectedWritings1958­2004.NewYork:OxfordUniversityPress,2006.Inforty‐fourselectedpapersbytheuniversallyacclaimedpioneerofmodernhospicecare,CicelySaunderschartsthecreationofaradicalnewapproachtodeathanddying—hospice.Writtenforamulti‐disciplinaryaudiencethecollectionisakeyreferenceforanyoneinterestedinthehistoryandpracticeofpalliativecare.

7

SchurkmanS.ElderLawQ&A.AnswerstoQuestionsAboutEstateandFinancialPlanning,HealthCarePlanningandElderAbuse.NewYork:NewYorkStateDivisionofCriminalJusticeServicesandthePaceWomen’sJusticeCenter,2000.AvailableinSpanishas:LegislaciónParaLasPersonaMayores.PreguntasYRespuestas.ThisguideanswersthemostcommonquestionsraisedbylaymenandincludesthenewPowerofAttorneyform.ItisavailableuponrequestbycallingThePaceWomen'sJustice Centerat914‐287‐0739,theHarry&JeanetteWeinbergCenterattheHebrewHomefortheAgedatRiverdale at718‐581‐1365,theWestchesterCountyDepartmentofSeniorProgramsandServicesat914‐813‐6435,orKeane&Beane,P.C.at914‐946‐4777.

SingerI.CreationofValue:MeaninginLife.Baltimore:JohnsHopkinsUniversityPress,1996.MITProfessorofPhilosophyIrvingSingerlooksatanabundanceofviews(over100)tofindaviablesolutiontohoweachofuscanmakealifethatisbothmeaningfulandsignificant.Heemphasizescreatingmeaninginlife,ratherthanthemeaningoflife.ForSinger“thedesireofmanypeopletolivealifethatamountstosomething,”differentiatesdyinganddeath,andsuggests“thatlifeisworthlivingwhenitsgoodelementsoutweighthebad.”WritteninplainEnglishandgroundedineverydayexperiencehesetsyouonanexcitingodysseyforthemind.ViewpointSeries.TheLancet.2005;366.Thisseriescoversend‐of‐lifeissuesinsevenreligioustraditions:Hindu,Islamic,Jewish,Buddhist,TraditionalChristian,CatholicandHumanist.ThepointsofviewareintheAugust,SeptemberandDecemberissues.Thesearticlesofferprovidersuseful,albeitsurface,information.WanzerS,withGlenmulllenJ.ToDieWell.YourRighttoComfort,Calm,andChoiceintheLastDaysofLife.Philadelphia:DaCapoPress,2007.Leadersintheright‐to‐diemovement,theseHarvardUniversitydoctorsadvocatemeasuresthatallowpatientstocontroldecisionsaboutend‐of‐lifetreatmentandensureapeacefuldeath.Drawingoncasehistories,theyarguethatwhensomeoneisinuncontrollablepainwithnohopeofimprovement,hasteningdeaththroughlargedosesofmorphine,refusaloffluidsorinhalingheliumshouldbeanoption.Theydefineapatient’srights,includingtherighttorefusetreatment,andprovideinformationonappointingahealth‐careproxy.WebbNB,ed.HelpingChildrenandAdolescentsWithChronicandSeriousMedicalConditions.AStrengths­basedPerspective.Hoboken,NewJersey:Wiley,2009.Thispractical,inter‐professionalresourceisaguidetoprovidingcompassionatecareandsupporttomedicallychallengedchildren,adolescentsandtheirfamilies.Itisavaluableresourceforsocialworkers,teachersandcounselors,mentalandmedicalhealthprofessionals.Includedarematerialsfromexpertsinavarietyoffields.WebbNB,ed.DokaK,forward.HelpingBereavedChildren.AHandbookForPractitioners3rded.NewYork:GuilfordPress,2010.Thiscompletelyrevisedandupdated3rdeditionofNancyBoyd‐Webb’sbestsellingbookwillhelppractitionersandcounselorsintheirworkwithbereavedchildren.Therevisionincludesrecentliteratureandnewcontentabouthelpingbereavedchildrenfollowingdeathsinthefamily,schoolandtheworld.ZeiselJ.I’mStillHere.NewYork:PenguinGroup,2009.JohnZeisel,PhD,aninnovatorinthetreatmentofAlzheimer’swithnon‐pharmacologicalapproaches,advocatesforbuildingupontheuncompromisedpartsofthebrain.Thebookincludessymptoms,caregiving,communicationandrelationships.TheZeiselblogwww.ImStillHere.org/isaforumonlivingwithAlzheimer’s.DATABASES/PUBLICPOLICY/CLINICALPRACTICEGUIDELINESTheCochraneCollaboration.www.cochrane.org/TheCochraneCollaborationisaninternationalnot‐for‐profitorganizationmakingup‐to‐date,accurateinformationabouttheeffectsofhealthcarereadilyavailableworldwide.Itproducesanddisseminatessystematicreviewsofhealthcareinterventionsandpromotesthesearchforevidenceintheformofclinicaltrialsandotherstudiesofinterventions.TheirCochraneCollection[databaseonline]isregularlyupdated.

8

FamilyDecisionsCoalition.http://www.familydecisions.org/FamilyHealthCareDecisionsAct‐A.7729‐cGottfried/S.3164‐aDuane‐(FHCDA)wouldpermitanindividual'sfamilymembers,domesticpartners,andclosefriendstomakehealthtreatmentdecisionswhenthatindividualnolongerhasdecision‐makingcapacity.Thebillwouldestablishclearproceduresforselectingasurrogate,therebyensuringthatpatientsreceivethehealthcaretreatmenttheywouldchooseevenifincapableofexpressingthatchoice. Thislegislationwasoriginallyrecommendedin1992.Asof11/2/09thelegislationhaspassedintheNewYorkStateSenateandawaitspassageintheNewYorkStateAssembly.www.nationalconsensusproject.org/guideline.pdfTheGuidelinesrepresentconsensusachievedamongnationallyrecognizedexpertsonvoluntary,evidence‐basedguidelinestoensurequalityandconsistencyofcare.PERSONALVOICESAlbomM.TuesdaysWithMorrie.AnOldMan,aYoungMan,andLife’sGreatestLesson.NewYork:RandomHouse,1997.AvailableinaudioandDVDformats.AsMorrieSchwartz(Albom’scollegementor)facesdeath,Albombeginsweeklyvisitsthatcontinuethroughhisprofessor’sfinaldays.ThereismuchtolearnfromMorrie’stravelsfromdiagnosistoserenedeath.AlvarezJ.OnTheSouthernFront.Caringforelderlyparentsacrossbordersandculturesandlanguages.HealthAffairs.2009;28,4:1163‐1170.Dominican/AmericanauthorJuliaAlvarezwritesofproblemsthatarisewhenlongdistancecaregivingbecomesLargaDistancia.Joining7millionotherAmericansinthesameboat,sheandhersistersponderandeventuallyworkout¿CómovamosacuidaraMamiyPapi?HowarewegoingtocareforMamiandPapi?AtwellD.SomewhereTowardstheEnd.NewYork:W.W.Norton&Company,2009.At89DianaAtwelldecidedtohaveagoatwritingaboutthe“inevitableend”andtheexperienceoflivingduringone’slastyears.Sherecountswithregretthemanylossesbutcelebratesthosethathavetaughthertoregretverylittle…events,loversandfriendships.Itisthesoberingrealityoftimeswingèdchariothurryingnearthatfocusesherontheimportanceoftryingtoconductherlife“properly.”BarnesJ.NothingtoBeFrightenedOf.NewYork:AlfredA.Knoff,2009.Howdoesonedealwiththebasicfactofhumanmortality?ThroughhumorandseriousinquiryauthorJulianBarneswritesthiselegantcontemplationondeath.Heintersperseshisownmemorieswiththoseofwriters,composers,theologians,scientistsandbusinessmentokeepthedebateopenandvigorous.Barnes’openinglineis“Idon’tbelieveinGodbutImisshim.”Abeautifulbookthat“keepsrumblingandgrumblinginthemindforweeks.”(GarrisonKeillor).BaubyJ.DivingBellandtheButterfly.LeggattT,trans.NewYork:Vintage,2007.AvailableinDVDformat.Whatisitliketobeunabletomoveanypartofyourbodyexceptyourlefteyelid?In132pages,filledwithsentencesyouwon’twanttomiss,Jean‐DominiqueBauby,formerFrenchElleeditor‐in‐chieftransportsusfromourworldtohis.OnDecember8,1995,43‐year‐oldBaubysufferedamassivestrokeresultingintherarelocked‐insyndrome.Overcomingself‐pityBaubywroteabookaboutbeinginhisdivingbell.Hecomposeshismemoirbyrespondingwithalefteyeblinktoaspecialalphabetrecitedandrecorded.Baubydiedin1997at45.DassR.StillHere.EmbracingAging,Change,andDying.NewYork:RiversideBooks,2000.AvailableinDVDformatasFierceGrace,2002.RamDassblazedaspiritualpathforthe60’sgeneration.SubsequentlyuponleavingteachingatHarvardhesuccessfullylecturedanddidservicearoundtheworld.In1997hewas“stroked.”Afteraclosecallwithdeathandfacingpain,fear,anddependency,hewritesabouthisstruggletoovercomedespairandtoregainhiscenter.deBeauvoirS.AVeryEasyDeath.O’BrianP,trans.NewYork:PantheonPress,1985.DaughterSimonerecountsthedramaofhermother’scancerinaParisnursinghome.It’sa“hardtimedyingwhenoneloveslifesomuch”hermothersaysyetcontinuestorebelagainstdeathevenasa“skeletonclothedindampblueskin.”Wegeta1960’sviewofend‐of‐lifepainandsufferingbeforethedaysofpalliativecare.

9

DidionJ.TheYearofMagicalThinking.NewYork:AlfredA.Knopf,2005.“Lifechangesfast.Lifechangesintheinstant.”InthemiddleofaconversationthatJoanDidionandherhusbandoffortyyearswerehaving,JohnDonnesufferedafatalcoronary.Bothhadjustreturnedfromthehospitalwheretheirdaughterwasinacoma.(Quintanadiedfourmonthslateratage39.)Didionwriteshowpainfullydifficultitwastomakesenseofitallandkeeponlivingandwriting.“Iknowwhywetrytokeepthedeadalive:wetrytokeepthemaliveinordertokeepthemwithus.”FrankelV.Man’sSearchForMeaning.Boston:BeaconPress,1959.Ismeaningpossibleinspiteofsuffering?Inthisbrief,classicvolumeDr.VictorFrankelpresentshisphilosophythatweareneverleftwithnothingaslongasweretainourfreedomtochoosehowwewillrespondtosuffering.HallD.Without:Poems.NewYork:HoughtonMifflinHarcourt,1998.Inordinarywords,thesepoemswrittentohiswifeJaneKenyonsoonafterherdeathat47in1995,U.S.PoetLaureateDonaldHallexpresseshislove,loneliness,longingandgrief.Fromthefirstthreewords“HerLongIllness”to“CanyouhearmeJane?”wemournalongwithhimforhisand,perhapsalso,forourpersonalwithout.LaitmonE,ed.withTollT.OurChildren,OurHearts.Tuckahoe,NY:BereavementCenterofWestchester,2008.Givingwordstodevastatingsorrowwastheinspirationforthisbookabout25childrenfromthetenderageof28daysto41years.Parentsandsiblingsfindcomfortbywritingelegiestotheirtreasuredchild.Copingwiththeuntimelydeathofachildis“aprocess,anend,abeginningandaboveall,alifelongjourneyofchange.”LewisCS.AGriefObserved.NewYork:HarperCollins,1961.ShatteredwithgriefafterthetragicdeathofhisbelovedwifedrivesaninfluentialChristianwriterandoneoftheintellectualgiantsofourtimestoask,“WhereisGod?”C.S.Lewisstrugglestocometogripswithlife,deathandfaithandhisanguishfindshehas“graduallybeencomingtofeelthatthedoor[toGod]isnolongershutandbolted.”“Praiseisdueorder;ofHimasthegiver,ofher,asthegift.”Poisitornòall’eternaFontana.ThentoEternalLightshe(Beatrice)turnedoncemore(Dante,Paradiso,XXXI,93).PriceR.AWholeNewLife.AnIllnessandAHealing.NewYork:Atheneum,1994.Aftera4year,mid‐lifestrugglewithspinalcancerthatchangedhislifeReynoldsPriceasked“whoamInow?”Facedwithongoingchallengeshefinallyfindshisownvisionofhealingthatgivesmeaningtohiscurrentlife.RieffD.SwimmingInaSeaofDeath.ASon’sMemoir.NewYork:SimonandSchuster,2008.DavidRieffsharesprivatestrugglesinthisportraitofhismotherSusanSontag.Heisbyhersidewhensheconfrontsthefirstcancerdiagnosisin1975andthroughtoherfinaldaysanddeathin2004atseventy‐one.Alwaysarigorousresearcher,weglimpseintoSontag’sthinkingassheapplieshermantra“moreisalwaysbetter”toachievehergoalofsurvival.Shechoseaprolongeddeath.RosenblattR.MakingToast.Afteradaughterdies,anewlifewithherchildren.TheNewYorker.December15,2008.http://newyorker.comElizabethRosenblattSolomonpediatrician,wifeandmother,collapsedanddiedatage38.RobertRosenblatt(NewYorkerwriter)andhiswifemoveinwiththefamily.Hewritesofhisnewrolesasplaymate,chauffeur,homeworkandbreakfasthelper.Rosenblatttakescomfortfrom“thisishowtolive‐‐valuethepassingoftime.”SaccoJ.OnHisOwnTerms.ADoctor,HisFatherandtheMythofthe‘GoodDeath’.Ashland,Oregon:CaveatPress,2006.Apracticingphysician,JosephSacco,MD,sharesapersonalaccountofhisfather’sdyingandsomepatientexperiencestoshedlightonhisinsightsintowhatmakesagooddeath.Heconcludesthatthosewhoareterminallyillneed“patience,asympatheticear,andlotsofmorphine.Thatiswhatmakesagooddeath.”TerkelS.WilltheCircleBeBroken?ReflectionsonDeath,Rebirth,andHungerforaFaith.NewYork:BallantineBooks,2001.StudsTerkelcoversasubjectnoneofushasyethadbutcertainlywill—death.Muchtohissurprisethesixty‐threepeoplewithwhomhespokewereeagertosharetheirthoughts.Terkelhimselfreadsobituarieseverydayandconcludesthatthisbook“isaboutdeath,ofcourse,butonlybylivingtothefullitslongprelude,life.”

10

WilliamsC.GloriousAdventure.www.pioneernetwork.net.August,2009.Theexperienceofreadingandrespondingtoherfather'sletters,asCarterWilliamsfeltadeepcallingtodo,becameajourneyintofardeepermeaninginherownlife.Sheeloquentlywritesthattoarriveatthesenewmeanings"Ihadtocometoknowandlovemyfather,andgrievehisdeath."Now86,shemadethisjourneywithherfather'slettersinhereighthandninthdecades.LITERARYVOICESAgeeJ.ADeathintheFamily.NewYork:PenguinBooks,2008.Publishedin1957,thisPulitzerPrizeautobiographicalnovelmovinglydepictsfamilylossandgrieffollowingtheaccidentaldeathofthefatheratage36.Thestoryistoldthroughtheeyesofthesix‐yearoldson,Rufus.AnkaP.MyWay.Availableinmanyformatsbynumerousrecordingartists.”MyWay”isanEnglishversionofaFrenchsong.FrankSinatrapopularizedthemeaningfulEnglishlyricsbyPaulAnkaonhis1969albumMyWay.Thelyricscontainoneman’sreflectionthat“AndnowtheendisnearandsoIfacethefinalcurtain,”looksbackonhislife.Hehasfewregretsabouthowhelivedandfacedchallengeswhilemaintainingsomerespectabledegreeofintegrity.Why?“Andyes,Ididitmyway.”AriyoshiS.TheTwilightYears.TaharaM.trans.NewYork:KodanshaInternational,1984.Facedwiththecareofhisagedsenilefather,ShigezodelegatesalltheworktohiswifeAkiko.Thisisatimelessbookwiththeuniversalthemeofawomancaughtbetweentraditions,expectations,andpersonalrealities.AwayFromHer.(DVD).SantaMonica,California:Lionsgate,1999.Fiona(JulieChristie)andGrant(GordonPinsett)areforcedtofacethefactsthatFiona’sforgetfulnessisAlzheimer’sDisease.Sheultimatelydecidestogotoanursinghomeandweseehowthatdecisionaffectsbothhusbandandwife.Awrenching,memorableportrayalofamarriage,illnessandthemeaningoflove.BrownL,(Author),BrownM.(Illustrator).WhenDinosaursDie:AGuidetoUnderstandingDeath.NewYork:Little,BrownandCompany,1996.“WhatdoesAlivemean?”“WhyDoesSomeoneDie?”Thisbookaddresseschildren’sfearsandcuriosityhead‐on.Thedelightfulpicturespartnerwiththetextandhelpchildrenrelax.TheBrowns‐LaurieandMarc‐makedeathseemlessmysteriousandprovideplentyforchildrentodiscusswiththeirparentsandotheradults.DanteA.ThePortableDante.MusaM,trans.NewYork:Penguin,2003.InalyricaltranslationbyMarkMusawereadDanteAlighieri’smasterpiece,theDivineComedy.Completedin1314itattractsandmovesreaderstoday.Thepoemisinthreemajorsections:Inferno(Hell),Purgatorio(Purgatory),andParadiso(Heaven).Themainactioncentersononeman’sjourneytoGodandtoSalvation.DoveR.ThomasandBeulah.Pittsburg:Carnegie‐MellonUniversityPress,1986.Inthesepoems,formerU.S.PoetLaureateRitaDovetellsthestoryofamarriedblackcoupleasseenfromtheirtwoperspectives.Thefirst,"Mandolin,"consistsof23poemsgivingThomas'sside,and"CanaryinBloom"givesBeulah'sin21poems.DovewonaPulitzerPrizeforthisbeautifulbookthatpaintsportraitsofbeginningsandendings,oflifeanddeath.EdsonM.Wit:APlay.NewYork:FarberandFarber,1999.AvailableinDVDformat.Recentlydiagnosedwithlate‐stageovariancancer,VivianBearing,PhDfindsthatthehospitaldoctorstreatherbodyasatext.Hailedasoneofthegreatplaysofthedecade,Witisusedtoteachmedicalstudentsaboutempathyandcompassionattheend‐of‐life.HemingwayE.TheOldManandtheSea.NewYork:Scribner,1995.TheErnestHemingway1955classicisanovellaofanagedCubanfisherman’sbattlewithagiantmarlin.“Manisnotmadefordeath.Amancanbedestroyedbutnotdefeated”saysoldmanSantiagoashefightsoffthesharkseatingthemarlinuntiltherewasnothingmoreforthemtoeat.Thistragic,yettriumphantstoryofcourageinthefaceofdefeat,prideandhonorinstruggle,lendsitselftomanyinterpretations,criticsandreaders.

11

RothP.Everyman.NewYork:VintageInternational,2007.Unnamedhero,He,ishoundedbyasenseofmortalityfromhisearlyencounterswithdeathtohisowndeathatseventy‐one.PhillipRothtakesusinto“thelayersofhislife”writingabouttheordinarystruggleswithhumanmortalitythatweface.EverymanHeponders,perhapsechoingourownthoughts“I’vegotadeep‐rootedfondnessforsurvival.”SeboldA.TheLovelyBones.NewYork:Little,BrownandCompany,2002.“MynamewasSalmon,likethefish;firstnameSusie”beginsthestory.Susieisadjustingtohernewhomeinheaven.Susiewasmurderedatfourteen.ThisacclaimednovelbyAliceSeboldtakesanunthinkablesubject–thehorroroflosingachildthroughviolenceandturnsitintoalyricalportraitoffamilyloveandhealing.SparkM.MementoMori.NewYork:ANewDirectionsClassic,2000.Writtenin1959andrelevanttoday,LondonoldadultsreceiveanonymousphonecallsremindingthemthatRememberyouwilldie(MementoMori).Thisnovelisfunny,insightful,poignantreadingwhereoldfeathersareruffled,oldsecretsarekickedupandremindersthat“leavesonerelishinglifeallthemore.”ThomasD.SelectedPoems­1934­1952.Revisedforthe21stCentury.NewYork:NewDirections,2003.DylanThomas(1914‐1953)preparedthisvolumein1952.Thebookincludesthebestofhisworksthathewishedtopreserve.YouwillfindAndDeathShallHaveNoDominionandDoNotGoGentlyintothatGoodNight.“Thesepoems…arewrittenfortheloveofManandinpraiseofGod,andI’dbeadamn’fooliftheyweren’t.”TolstoyL.TheDeathofIvanIlychandOtherStories.PevearR.andVolokhonskyL.trans.NewYork:Knopf,2009.IvanIlych’slife“hadbeenmostsimpleandmostordinaryandthereforemostterrible.”At40,aminoraccidentturnsintoaterminalinjury.Asheslowlymovesandpainfully,towarddeath,Ivanstruggleswiththeriddlesoflifeanddeath.“Itcan’tbethatlifeissohorribleandsenseless?”“MaybeIdidnotliveasIought.”UpdikeJ.Endpoint.TheNewYorker.March16,2009.http://archives.newyorker.comAcclaimedpoet,critic,novelistandshortstorywriterJohnUpdikeconfrontshisfinalillnessinthese2008poems.ThepoementitledFinePointwaswritteninBoston’sMassachusettsGeneralHospitalonDecember22,2008.UpdikediedonJanuary27,2009.AfterhisdeaththebookEndpointwaspublished.Itincludesotherequallybeautifulpoetrywritteninthelastsevenyearsofhislife.Endpoint.NewYork:AlfredA.Knopf,2009.ValeryS.Badger’sPartingGifts.NewYork:Lothrop,Lee&ShepardBooks,1984.“Badgerwassooldthatheknewhemustsoondie.”“AlltheanimalslovedBadger,andeveryonewasverysad.”Thestorycontinuesaseachfriendtellsofaspecialmemorytheyhaveofhim.Wonderfulillustrationscomplementatalesimplyandhonestlytoldaboutacceptingdeath.Accessibletochildrenandmeaningfultoadultsaswellithasalsobeenusedincoursesondeathanddying.JOURNALSHastingsCenterReportHealthAffairsHealthLawJournalJournaloftheAmericanMedicalAcademy(JAMA)JournalofHospiceandPalliativeCareNursingJournalofHumanisticPsychology JournalofNursingJournalofPainandSymptomManagementJournalofPalliativeMedicineJournalofPastoralCounselingJournalofSocialWorkInEndofLifeandPalliativeCareLancetNewEnglandJournalofMedicineOncologyNursingForum

12

CRUISINGTHEINTERNETWEBSITESAIDSCommunityResearchInitiativeofAmerica(ACRIA).www.acria.org.Foundedin1991,ACRIAbringsanactivistapproachtothestudyfornewtreatmentforHIVandAIDS.Atreatmenteducationcomponentwasaddedin1997. Alzheimer’sAssociation.www.alz.org.Anationalassociationfocusedoneducatingthepublic.AmericanCancerSociety.www.cancer.org.ACSprovidesinformationandalsohasaCancerSurvivorsNetwork.AmericanDiabetesAssociation.http://www.diabetes.org.Forallpeoplewith,oratriskfordiabetes.InformaciónenEspañol.CancerSupportTeam.www.cancersupportteam.org.Aunique,non‐profithomecareorganizationthatprovidesprofessionalnursing,socialwork,andothersupportiveservices,freeofcharge,tocancerpatientsandtheirfamilieslivinginlowerWestchesterCounty,NewYork.CentertoAdvancePalliativeCare(CAPC).www.capc.org.DianeE.Meier,MDisDirectoroftheCentertoAdvancePalliativeCare,anationalorganizationdevotedtoincreasingthenumberandqualityofpalliativecareprogramsintheU.S.TheMountSinaiSchoolofMedicine,NY,providesdirectionandtechnicalassistance.CompassionandChoiceswww.compassionandchoices.org.Anorganizationthatsupports,educatesandadvocatesforchoiceandcareattheend‐of‐life.CompassionandSupport.www.compassionandsupport.org.ThisistheinformationsiteforMOLST—MedicalOrdersforLifeSustainingTreatment.Itincludesvideosandcontactinformation.Thewebsitestressestheimportanceofplanningahead,knowingyourchoices,makingsounddecisionsandsharingyourwisheswithyourlovedonesandhealthcareprofessionals.SeeBombaarticleonpage1.FamilyCaregiverSupportProgram.WestchesterCountyDepartmentofSeniorProgramsandServices.http://www.Westchestergov.com/Seniors_Caregiver.htm.Theprogramoffersarangeofservicesandinformationonandfortheelderlyordisabledwhoneedhelptoremainintheirhomesandcommunity. Gilda’sClub.www.gildasclub.org.Createswelcomingcommunitiesoffreesupportforeveryonelivingwithcancer‐men,women,teensandchildren‐alongwiththeirfamiliesandfriends.HastingsCenter.www.thehastingscenter.org.TheHastingsCenterisanindependent,nonpartisan,andnonprofitbioethicsresearchinstitutefoundedin1969.TheCenter'smissionis“toaddressfundamentalethicalissuesintheareasofhealth,medicine,andtheenvironmentastheyaffectindividuals,communities,andsocieties.”HealthCareChaplaincy.www.healthcarechaplaincy.org. HealthCareChaplaincy'sexpertiseinprofessionalmultifaithspiritualcareistransforminghowhealthcareisunderstoodanddeliveredthroughresearch,education,monthlyandquarterlynewsletters,clinicalpractice,advocacy,andinnovation.TheydomostoftheHospitalChaplaincyworkintheNewYorkCityarea. HospiceFoundationofAmerica.www.hospicefoundation.org.Helpsthosewhocopepersonallyorprofessionallywithterminalillness,death,andtheprocessofgriefandbereavement.NationalAllianceforCaregiving.www.caregiving.org.Foundedin1996,NACisanon‐profitcoalitionofnationalorganizationsfocusingonissuesoffamilycaregiving.NationalHospiceandPalliativeCareOrganization.www.nhpco.org.Advancingcareattheend‐of‐life.InformaciónEnEspañol.

13

NationalMultipleSclerosisSociety.www.nationalMSsociety.org.TheSocietymobilizedpeopleandresourcestodriveresearchforacureandtoaddressthechallengesofeveryoneaffectedbyMultipleSclerosis.NationalPalliativeCareResearchCenter.www.npcrc.org.ThemissionofNPCRCistoimprovecareforpatientswithseriousillnessandtheneedsoftheirfamiliesbypromotingpalliativecareresearch.PartnerswithCentertoAdvancePalliativeCarewww.capc.orgtotranslatetheirfindingsintoclinicalpractice.NationalParkinson’sFoundation.www.parkinson.org.TheFoundation’smissionistoimprovethequalityofcareforpeoplewithParkinson’sdiseasethroughresearch,educationandoutreach.ObitMagazine.www.obit‐mag.com.Obitmagazineisaneclecticmixofideas,essays,cartoons,profilesandopinionsaboutlife,death,andtransitions.Linkstoobits,books,blogs,science,forumsetc.OnOurOwnTerms:MoyersonDying.Http://www.pbs.org/wnet/onourownterms.TheWebsiteincludesresourcesandanInter‐InstitutionalCollaboratingNetwork(IICN)thatjoinsmajorend‐of‐lifecareorganizationsfromtheUnitedStates.PartnersAgainstPain.www.partnersagainstpain.org.PartnersAgainstPain®isaresourcethatservespatients,caregivers,andhealthcareprofessionalstohelpalleviateunnecessarysufferingbyadvancingstandardsofpaincarethrougheducationandadvocacy.PioneerNetwork.www.pioneernetwork.net.Since1997,thePioneerNetworkhasbeendedicatedtocreatingculturechangeinallsettingswhereagingandsupportiveservicesaredelivered.Itiscommittedtoestablishingthekindofcarethateachofuswantsforourlovedonesandourselves. ReclaimingtheEnd‐of‐Life.www.ReclaimtheEnd.org.Anonprofit,nonpartisan,NewHampshire‐basedprojectdesignedtomakeboldchangesinthewaywecareforfrailelderly,seriouslyillpersonsofanyage,andfamilycaregivers.IraByock,MDisthecofounderofthewebsite.WestchesterCountyDepartmentofSeniorProgramsandServices(DSPS).www.westchestergov.com/seniors.TheDepartmentofSeniorProgramsandServices(AreaAgencyonAging)offersavarietyofservices,seminarsandactivitiesforseniorsandcaregiversthroughouttheyear. LinkstoinformationabouttheLivableCommunitiesApproach,theCaregivingCoachingProgramandamyriadofotherservices.WestchesterCountyOfficeforWomen.www.westchestergov.com/women. TheofficeprovidesonlinesupportandinformationforSandwichGenerationCaregivers‐womencaughtbetweenkids,careers,andelderlyinWestchesterCounty.VisittheirFacebookpageformoreinformation.

WestchesterEnd‐of‐LifeCoalition.www.westchesterendoflife.org.Thiscommunity‐basedcoalitiondrawsonlocalresourcestoexpandawarenessoftheimportanceofend‐of‐lifeissuesandinformprofessionalsandthepublicaboutservicesavailabletothem.WestchesterPublic/PrivatePartnershipforAgingServices.www.westchesterpartnership.org.TheWPPPdevelopsresourcestoprovidemyriadservicesthathelpseniorsagewithindependenceanddignityintheirhomecommunity.Italsohelpscaregiversassisttheirfamilymembersandsuccessfullymeettheirworkand otherfamilyresponsibilities.BLOGShttp://healthcarecostmonitor.thehastingscenter.org.Commentaryandopiniononcostcontrolaspartofhealthcarereform.www.pallimed.org.DrewRosielle,MDreviewscurrentpalliativemedicine,hospiceandend‐of‐liferesearch.http://well.blogs.nytimes.com.TaraParker‐Pope,NYTimesWellcolumnistandblogger,onthelatestmedicalresearchandsocietaltrendsonhealth.Linkstocurrentarticles,websites,andblogs,andarchivedarticles.Pickyourdisease,enterandfollowthelinks.

14

Birth is a beginning and death a destination

But life is a journey. A going, a growing from stage to stage. From childhood to maturity and youth to old age.

RabbiAlvinFine(1917‐1999).

To suspect your own mortality is the beginning of terror; to Learn irrefutably that you are mortal is to know the end of terror. FrankHerbert,ChildrenofDune,1977(1920‐1986).

Because I could not stop for Death- He kindly stopped for me- The Carriage held but just Ourselves-And Immortality. EmilyDickinson(1830‐1886).

You might consider things like old age and death as negative, unwanted and simply try to forget about them. Eventually those things will come anyway. HisHolinesstheDalaiLama.

Yea, though I walk through the valley of the shadow of death, I shall fear no evil for thou are with me: thy rod and thy staff they comfort me.

FromPsalm23,KingJamesVersion. You will If you would indeed behold the spirit

Of death, open your heart wide unto the body of life. For life and death are one, even as the river and the sea are one. KahlilGibran(1883‐1931). The life of each and every human being on this earth is a short one, but the deeds and actions of a true believer are eternal if he knows how to channel them in the right directions—a copy of the Qur'an, الكريم القرآن , a mosque which he erected, a house which he built for the traveller, a stream which he caused to flow or a Sadaqah (charity) which he gave from his property.

BaseduponthewordsofAbuHurairah,NarratorofHadith (603‐681CE). Dying is simple, what’s worse is the separation.

JaneKenyon(1947‐1995).

He who fears death enjoys not life. MateoAlemán‐SpanishNovelist(1547‐1614).

The Man departs - there remains his Shadow. 人去留影

AtraditionalChinesesaying. Grief turns out to be a place none of us know until we reach it.

JoanDidion,YearofMagicalThinking(1934).

The dream shall never die. EdwardKennedy(1932‐2007).

Death leaves heartache no one can heal, Love leaves a memory no one can steal. IrishHeadstone.

ENDLINES