Worcester Medicine May/June 2022

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DOMAIN5 EncompassingSpiritual, Religious,andexistential aspectsdelineatingquality inpalliativecare. GERIATRICIAN PERSPECTIVE Openingcommunication withstrugglingpatients. MUSICTHERAPYIN PALLIATIVECARE Musicasapurposefultool inthetherapeuticquality ofhealing. PATIENTPERSPECTIVE De-Mystifyingthecomplexity ofPalliativeCareforpatients andtheirfamilies. ROLEOF THEPHARMACIST Individualizedrolesthat catertoeachpatient’s specificneeds Volume91•Number3PublishedbyWorcesterDistrictMedicalSocietyMay/June2022 WDMS.ORGPresortedStandard USPostage PAID Worcester,MA PermitNo.467 FulfillingLives:PalliativeCare

onthecover Dayfivehighgrade humanblastocyst Contents MAY/ JUNE2022 PalliativeCare Editorial 4 RebeccaKowaloff,DO President’sMessage 5 SpiroSpanakis,DO PalliativeCare:OnceTaboo,NowOverdue? 6 GaryBlanchard,MD Domain5 7 Rev.Msgr.PeterR.Beaulieu,MA,STIL TruePalliativeCare:APatient’sPerspective 8 UMassPalliativeCareTeam RebeccaKowaloff,MD MusicTherapyinPalliativeCare 10 MariaCarla-McDonald,MA,MT-BC,FAMI VandanaNagpal,MD,FACP,FAAHPM TheRoleofthePharmacistonthePalliative TeamSymptom/PainManagement 12 AnnaK.Morin,PharmD PalliativeApproachtoDialysisCare 13 AshleyRotella,BSN,MSN WhatMrs.TTaughtMe 14 PawinaSubedi,MD PUBLISHEDBY WorcesterDistrictMedicalSociety 321MainStreet,Worcester,MA01608 wdms.org|mwright@wdms.org|508-753-1579 WDMSOFFICERS President GilesWhalen,MD VicePresident AlwynRapose,MD Secretary MichelleHadley,DO Treasurer B.DaleMagee,MD WDMSADMINISTRATION MarthaWright,MBA,ExecutiveDirector MelissaBoucher,AdministrativeAssistant WorcesterMedicinedoesnotholditselfresponsibleforstatementsmadebyanycontributor.StatementsoropinionsexpressedinWorcesterMedicinereflecttheviewsoftheauthor(s)andnotthe officialpolicyoftheWorcesterDistrictMedicalSocietyunlesssostated.Althoughalladvertisingmaterialisexpectedtoconformtoethicalstandards,acceptancedoesnotimplyendorsementby WorcesterMedicineunlessstated.MaterialprintedinWorcesterMedicineiscoveredbycopyright.NocopyrightisclaimedtoanyworkoftheU.S.government.Nopartofthispublicationmaybe reproducedortransmittedinanyformwithoutwrittenpermission.Forinformationonsubscriptions,permissions,reprintsandotherservicescontacttheWorcesterDistrictMedicalSociety. WDMSEDITORIALBOARD LisaBeittel,MBA SoniaChimienti,MD AnthonyL.Esposito,MD HeidiLeftwich,DO RebeccaKowaloff,DO, GuestEditor AnnaMorin,PharmD NancyMorris,PhD,ANP AlexNewbury,MD, ResidentRepresentative ThoruPederson,PhD JoelPopkin,MD AlwynRapose,MD ParulSarwal,MD RobertSorrenti,MD PawinaSubedi,MD, ResidentRepresentative RamUpadhyay,MD PeterZacharia,MD PRODUCEDBY StudioDiBella GuidingChannels THANKYOUTO TheReliantMedicalGroup UMassMemorialHealthCare MusicWorcester PhysiciansInsurance CarrFinancial ADVERTISING InquiriestoMarthaWright mwright@wdms.org 508-753-1579 CommunicatingintheICU 15 ConnieGe,BA FromtheCurator TerminalCareforIncurableCancerVictims 16 B.DaleMagee,MD,Curator LegalConsult CaretakersoftheElderly:Risk,NeglectandInjury 16 PeterMartin,Esq. AsISeeIt “TalkingToPatients”ALectureSeriesinMoldova 17 PaulHart,MD EssayContest TheMeyersHealthCareInstitute HealthPolicyEssayContest 18 JerryH.Gurwitz,MD RonAdler,MD AFreshStart(1stplace) 19 MeganHansen ReflectionsontheCostofStatins(2ndplace) 20 ShervinRezaei SocietySnippets Oration/AnnualBusinessMeeting 22 MelissaBoucher

obstetricsandpediatricsarenotimmunefromthe realitiesofseriousillnessanddeath.Evenifwedonot thinktheseskillsrelevanttoourpractice,theyareat thecoreofbeingadoctor. Ifthepandemichasshownusanything,itisthat politicsandbureaucracyaside,thepublicstillholds ourprofessioninnobleregard.Thereisatleastakernelofreverencefortheknowledgeandskillswehave refinedandforourdedication,sacrifice,andselflessness.Asseriousillnessanddeatharethefoundation ofmedicine,Ibelieveweareobligatedtodevelopour abilitytodiscussthesematterswithourpatientstobe worthyofsociety’sesteem andofourtitles.Thereare notnearlyenoughpalliativecarecliniciansforallspecialtiesnottobehavingtheseconversationswiththeir ownpatients.Tobeaproviderdevoidofthemost basicformoftheseskillswouldbelikeaprimarycare physicianwhocannotmanageroutinehypertension orasurgeonwhocannotcloseanincision.Ourpatientshonoruswithatrustaboveallothersandwe mustmatchthattrustwithcompetenceandcommitment.Weallchosespecialtiesthatsuitus,butweall chosemedicinewithitscentralthemesofillnessand sufferingfirst.Everythingwedoistostaveoffdeath, butitsinevitabilityisimplicitinallourinterventions. Asweintervene,wemustacknowledgethatour powertoprolonglifeisnotlimitless,anddemonstrate thatourpowertobepresentis.

CANHONESTLYSAYTHATABOOKCHANGEDMYLIFE.I

RECEIVED

Dr.RebeccaKowaloff,DO,isboardcertifiedinpalliativemedicineisamemberoftheinpatientPalliative MedicineteamatUMass.Shelovestoeducatelaypeople andmedicalprovidersinpalliativecareandcanbe reachedatRebecca.kowaloff@gmail.com.

MAY/JUNE20224

“TheLostArtofHealing”byDr.BernardLownfromahighschool teacherasagift,andwhileIreadalmostexclusivelyfiction,Ihappenedtoreadthebookyearslaterjustaftergraduatingcollegewhileapplyingtomedicalschools.Asthedaughterandnieceofprimarycare doctors,Iknewthehumanisticsideofmedicinewithlongstandingand deeppatientrelationshipswasoneofthemostappealingaspectsofbecomingadoctor.ButreadingDr.Lown’sworkgavethatimpetusdirectionandform.Thinkingthatmedicinewasprimarilyaboutstavingoff death,Ihadnotconceivedofaroleforaphysicianotherthantreating withtheintenttocure.Dr.Lown’sbookmademeseehowmuchcare thereisintreatingpeoplefacinglife-threateningillnessandhowmuch ouractionsasdoctorsinthatsacredtimecanimpactpatientsandtheir families.Later,inresidency,withaplantoapply topalliativecarefellowships,ImetElizabethinmyprimarycareclinic.Shewasathoughtfulformerhighschoolmathteacherwholovedtoteasemeandher daughter-in-lawatourvisits.HerworseningCOPDlandedherinthe hospital,andherchronicbackpaindebilitatedherincreasinglyoverthe monthsIcaredforher.SheenteredthehospitalshortlybeforeChristmas withexcruciatingbackpainsuchthatshecouldn’twalk.Isatwithher, holdingherhand,andlookedherintheeyesandgavevoicetowhatshe alreadyknew.Shewasdying.Thenextwordsoutofhermouthwere, “thankyou,”andIhadneverfeltmorelikeadoctor.Shediedathomea fewweekslater.

Editorial WORCESTERMEDICINE

Theconceptofcontinuingmedicaleducationisonethathasbeen centraltoourcraftsincebeforeformalizedmedicaleducation,asthe WorcesterDistrictMedicalSociety’slonghistoryasarepositoryofmedicalliteratureandlecturesponsorillustrates.Therearesomeofuswho relishthearrivalofamedicaljournaltoporethroughthelatestresearch advancesandcollegialdebateswithin.Butmanyofus,likemyself,have ourfavoritetopics,andhaveastackofjournalsthatweperusetokeep nominallyabreastofnewdevelopmentsrelevanttoourpractice.Butare notseriousillnesscareandendoflifecarerelevanttoallourpractices? Leavingasidespecialtiesthatdealalmostexclusivelywithseriousillness, rheumatologiststreatpatientswithsometimesdebilitatingchronicillnessesthatleavethemvulnerabletoseriouscomplicationsasthey progress.Gastroenterologistsdiagnosecirrhosiswhichlimitsprognosis andcancripplequalityoflife.Interventionalradiologistsemergently treatlife-threateningproblems,oftenonpatientswhoaretoosickfor traditionalsurgicalapproaches.Weallneedtohaveformaltrainingin howtotalktopatientsabouttheirillnessfrankly,honestly,andcompassionately.Thisisnotinherentinbeingadoctor.Weallspentpartof oureducationrotatingthroughspecialtiessothatthepsychiatrists amongusremembersnippetsofgynecologyortheorthopedicsurgeons havehadsomeexperiencewithCrohn’sdisease.Unfortunately,even I RebeccaKowaloff,DO

Tobeaphysicianwemustbeabletoaddressthese issuesdirectlywithourpatients.Tobea good physician,wemustbeabletosupportthemalongtheirill nessjourneyandguidethemtotheendoftheirlife compassionately.Iencourageyoutoconnectwiththe humanistinsideofyouwhochosemedicineandwith anopenheartandmindtodiscoveryourroleindeliveringthemuchneededchangesinourapproachto seriousillnessinAmerica. +

Ourdistrict’spublication,WorcesterMedicine,continuesto createtimely,localcontentontopicsofinteresttoourWorcester community.IwanttothankDr.RobertSorrentiandDr.Jane Lochriefortheirleadershipanddedicationtothecontinuedsuccessofthepublication,especiallyaswetransitionedtoacompletelyonlineplatform.Recently,wehaveadoptedaguesteditor modelwhichhasworkedwell.Ifyouhaveaninterestinbecoming aguesteditoronatopicofpersonalorprofessionalexpertise, pleasecontacttheoffice.Wealsoencourageyoutoviewourvideo publication,HealthMatters,onlineonourwebsite,wdms.org.

First,Iwouldliketoexpressmythankstomyfellowofficers, whoallservedasmentorstomepriortomebeingelectedtopresidentoftheSociety.Dr.Whalen,ourincomingpresident,hasled ourLegislativeCommitteesuccessfullyovertheyears.TherelationshipsforgedbetweenlegislatorsandtheSocietywillcontinue toyieldresultsforeffortsonbehalfofourpatientsinthefuture. Dr.Mageehasspentcountlesshoursstreamliningthefinancesof oursocietyandpositioningusonapaththatwillprotectourconsiderableassetsinthefuture.Dr.Felice’srelationshipstothecommunitywerevaluableassheservedasoursecretary,andher boundlessenergyalwaysbroughtafreshperspectivetoourdiscussions.

COMPLETEMYTERMASPRESIDENTOFTHE Iamgratefulfortheopportunitytoserveyouallinthis role.Overthepasttwoyears,Ihavewitnessedthelaudablededicationofourofficers,committeechairs,committeemembers,andstaffpromotingalltheinitiativesthatmakeourdistrict oneofthemostactiveandaccomplishedamongallotherdistricts.

SpiroSpanakis,DO WDMSPresident2020-2022

TheMedicalEducationCommittee,chairedbyDr.Mary O’Brien,continuestoholdinformative,timely,andvaluable programsformembers.TheWoman’sCaucus,chairedbyDr. LyndaYoung,continuestoprovideaforumforwomenmemberstoexchangeideasandnetwork.Finally,Iwouldliketo thankDr.FredBakerforhiseffortsaschairofourPersonnel Committee. Our delegationtotheMassachusettsMedicalSocietycontinuestobeastrongvoiceonimportantadvocacy,legislative, andpublichealthissuesatthestatelevelandIencourage moreofourmemberstobecomeinvolved.Therearealways openseatstobefilledgiventhesizeofourdistrict. + IwouldliketothanktheleadershipofUMassMemorialforalwayssupportingmyinvolvementinorganizedmedicinesince mydaysasaresident.IwouldespeciallyliketothankDr. StephenHeard,thelateDr.ShubjeetKaur,Dr.MatthiasWalz, Dr.ElifceCosarandDr.EleanorDuduchfortheirsupportinall myprofessionalefforts.AndspecialkudostoMarthaWright, ourExecutiveDirector,whoworkeddiligentlytomaintain momentumforallthesociety’sworkduringthepandemic.

WORCESTERMEDICINE MAY/JUNE2022 President’sMessage 5 S I

Weshouldallbeproud!

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Ourdelegationtothe MassachusettsMedical Societycontinuesto beastrongvoiceon importantadvocacy

SOCIETY,

Thedistrictservesourcommunityinmanyways,andthereis nobetterexampleoftheseeffortsthanourscholarshipcommittee, chairedbyDr.MichelePugnaire.Recently,wereceivedagenerous donationof$25,000fromourimmediatepastpresident,Dr. SahdevPassey,andhiswife,towardourscholarshipfund. Wealso appreciateallyourcontributionssothatwecancontinuetosupportourmedicalstudentsinthefuture.

Onthepublichealthfront,wewerefortunatetohaveDr. MichaelHirshserveasChairofPublicHealthCommittee, especiallyasCOVID-19affectedourcommunityandpatients. Dr.Hirsh’sevidence-basedrecommendationsprovidedcomfortandguidancetoallmembersaswenavigatedthechanginglandscapeofmanagingthevirus.Dr.Hirshandthe AwardsCommitteehavealsoidentifiedwelldeserving awardeesforourvariousmemberawards.

Ournewestcommittee,thestudentcommittee,hasmadevaluablecontributionstoprogrammingandinvolvingthenextgenerationofleadersintheorganization.StudentdoctorBennetVogt andDr.AnneLarkin’seffortshavecontributedtothissuccess,and weappreciatealltheirefforts.

•90%ofhemodialysispatientsreportedthattheirphysicianshadnotdiscussedprognosis.

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 6 “Canyoubelievethisfamily?Theyjustdon’tgetit.” “Ijustdon’tunderstandwhytheywantus to‘doeverything’fortheirfather…Lookathim!” “Whywouldanyoneallowtheirmothertosufferlikethis?” SA RESIDENTPHYSICIAN,I STILLREMEMBERFIRSTHEARINGTHESE rueful,exasperatedsighsinthefaceofoverwhelmingperceivedfutilityfrommyphysicianandnursingcolleaguestakingcareoffrail,older adultsnearingtheendoflife.ItwasthefirsttimeIwasforcedtoreallyconfront whatpalliativecarewas,couldbe,orshouldbe.Myinitialemotionalreaction, Iremember,wasmostlyoneofgroupthinknoddingtothesecomments:itreallydidseem,fromourperspective,likethesefamilieswerebeing“unreasonable,”“stubborn,”and,aboveall,“difficult.”Fromourperspective,wewere bandyingtermslike“widelymetastatic,”“ejectionfractionof10-15%,”and “non-revascularizable.”Howcouldthesefamiliesnotappreciatethatmoreof the“doeverything”panoplyhadclearlybecomemoreburdensomethanbeneficial?Weallfeltdisheartenedandhelplessinthefaceofsuffering.

Thedatafroma2014JAMAInternalMedicinereviewarticlebearsthis out,asseenthroughthefactshere:

Iwouldatthispointofferforgivenessandahealthydoseofempathyformy physiciancolleaguesandformyselfaswell.Foreveninsomeonewhopractices palliativemedicine,itisnevereasybeingpresent,tryingtoaligncompeting culturalandreligiousdifferences,andtryingtounravelyearsoffamilydynamicsthroughagoalsofcareconversation.Andveryfewphysiciansupuntilrecentlyreporthavingreceivedformaltrainingonhowtoholdgoalsofcare discussions,withcommunicationverymuchbeingaskilltobelearnedasa cen-

PalliativeCare:OnceTaboo,NowOverdue?

tralline.Idonotalwaysnavigateperfectlyforsure. Inpatientmedicineincreasinglyfeelslikeaturnstilewithfrequentportsofre-entry,notenoughtime forwell-meaningphysicianstobepresent,andfeelingshackledtotheelectronicpatient.Oftentimeswe endupchangingsomeone’sdiureticregimenfroma pilltoIV,backtothesamepillatthesamedosethey cameon,knowingthatthereisa ~35%chancethey’ll bebackwithinamonth.Andyet,theecosystemin whichwepracticedoesnotmakeiteasyforustoask ourpatients,“Whatdoyouthinkofallthis?Howdo youseethisallplayingout?”Itisoftenadehumanizingexperiencetobeapatientinthehospital,often witharunawaylocomotivemomentumofcareplans thatyoudon’treally,trulyhaveasayin. Palliativecareisagreatmanythings,fromaggressivesymptommanagementtoabridgetoallow formoreservicestomorecollaborativecare.But,in essence,itisanactivereflectiveprocess—“goalsof care”discussion—thattriestoalignapatient’smedicalplanwithwhotheyareasaperson,mindfulof theirpersonality,background,upbringing,cultural preferences,andreligiouspreferences.Itisbeing presentthroughactive,shared-decision-making.It isasking,“Whatmattersmost toyou inallthis?” And,remember:Beingapalliativecareprovider doesnotmeanthatyouautomaticallydeescalate everyone’scare.Farfromit.Geriatriciansandpalliativeprovidersareoftentheonesadvocatingfor more careforanolderadult,tryingtoovercomethebiasof ageism.WhenwesurveyAmericans,typically ~85% oftensaythattheyvaluequalityofdaysoverquantity ofdays.But,85%isnot100%bymynapkinmath andweneedtobecomfortableinhonoringaheartfeltcareplanexpressedbyapatientwhovalues somethingdifferentthanwemightchooseforourselvesorourfamilies. Weareallinundatedwithincessantmultitasking, butIwouldurgeallmycolleaguestotrytoemotionallytriagetheirtimetoallowforafiveminuteconversationwithonepatient,onceaday,eitherinthe inpatientoroutpatientsetting.Forsomeonewhohas perhapshadfrequentreadmissions,orworsening frailty,youmightask,“Whatdoyouunderstandabout allofthis?Whatmattersmostinallofthisto you?” Ibelievethatonlybynormalizingthesesortsof conversationsupstream—notat3am—canwetint ourperspectiveawayfrompatientsbeing“difficult” and“unreasonable.” + GaryBlanchard,MD GeriatricsandPalliativeCareMedicalDirector,Saint VincentHospitalHeadofKelleyHouse,Universityof MassachusettsChanMedicalSchool

Fifteenformativeyearslater,Ibelievethatthephrase“palliativecare”is stillthemostwidelymisunderstoodmedicaltermamongnotonlythelaypublic(see:newscoverageofanycelebrity/politicianchoosingto“stopfighting” theircancer“battle”whenoptingtoenrollinhospicecare)butalsophysicians, whooftenPavlovianlyassociatepalliativecarewithimminentdeath.But,what I’vecometorealizeasapracticinggeriatricianandSaintVincentHospital’s palliativecaremedicaldirectoristhatthefamiliesthatweperceivetospar withus—thosewho“justdon’tgetit”—haveoftentimesneverhadsomeone actuallysitdownwiththematanypointoftheirlovedone’sillnesstoassess theirunderstandingoftheirdisease,letaloneofferakind,butclear,prognosisorexpecteddiseasetrajectory.I’veobservedthatthecommonthreadwhen contentiousnessarisesisthataphysicianhasnottriedtoalignwithacognitivelyandfunctionallyvulnerablepatientandtheirfamilyontheiroverall goalsfortheirtreatmentplan,evenwhentheymighthavewidelymetastatic disease,severeHFrEF,ornon-revascularizableischemicheartdisease.

•69%ofpatientswithmetastaticlungcancerand81%withmetastatic coloncancerdidnotunderstandthatchemotherapywasveryunlikelyto curetheircancer.

•Thefirstconversationaboutend-of-lifecaretookplaceanaverageof33 daysbeforedeathforpatientswithmetastaticlungandcolorectalcancer.

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GaryBlanchard,MD

Religion,ontheother hand,isprimarilybuiltuponthelifeand teachingsofarecognizedleader.ItsadherentsfindinGod,regardlessof whichnametheyuse,answerstowheretheycamefrom,whytheyare here,andwhatitallmeans.Religionrepresentstheadherent’sfaithas theultimateanswertothosequestions.Evenatthepointofdeath,religiousfaithoftenfailstoprovidefollowerswithdefinitiveanswers,but nonetheless,thelifeoffaithconstitutesastructure,acodeofethics,and asenseofpurposetoafaithfulpatient’slife.Thepromiseofanafterlife, afundamentaltenetofmostorganizedreligions,isanotherkeyinfluenceforthereligiousthatcanoftenbethreatenedbyawrongdecision regardinglife-sustainingtreatment,itsrefusal,oritswithdrawal.

todiscontinueatreatmentthatthephysicianjudgestobenon-beneficial.Thus,insituationswhereapatient’slifeisthreatenedbyillnessor thetreatmentisjudgedbytheproviderstobe“causingthepatientundue suffering,”thoseultimatequestionsaboutwhatisdivinelycommanded, orshouldalmostneverbediscontinued,oftena ffectsthecareprovided tothosetwogroups.Thesamerespectforsuchfaith-basedultimatedecisionsshouldbeaccommodatedforotherreligiousgroups,aswell. Moreover,death’smeaningdiffersfromthepracticingadherentsofa faith-basedtraditionandthepredominantlysecularnatureofcontemporarymedicaldecisionmaking.

MEDICAL DECISION MAKING

Domain5 Rev.Msgr.PeterR.Beaulieu,MA,STIL

THE DEFINITIONOF SPIRITUALVS.RELIGIOUS PERSPECTIVE

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FTEREXTENSIVECONSULTATIONAMONGVARIOUS end-of-lifeorganizations,aconsensusamong themcoalescedintowhathasbecomeknown as“ClinicalPracticeGuidelinesforQualityPastoral Care.”Amongtheeightdomainsgeneratedfromthat effort,coveringthescopeofpalliativecare,Domain5 encompassesthespiritual,religious,andexistentialaspectsthatdelineatequalityinpalliativecare.Oneof thosedomainsincorporatesaspectsofhospiceandpalliativecare,whicharerelatedtothespiritualneedsof thedyingpatientandtheirfamily.Therearealsomethodstoassesstheneedforspiritualcare,communicating withthefamilyaboutsuchneeds,theroleofthespiritualadvisor,sensitivitytowardculturalandreligiousdiversity,andtheneedforspecializedpalliativecare spiritualadvisorstobuildrelationshipswithareaclergy.

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 7

THE AMERICAN SPIRITUAL &MEDICAL LANDSCAPE

AccordingtothelatesociologistPeterBerger,inassessingtheAmericanlandscape,hesaid,“Indiaisthe mostreligiouscountryintheworld,Swedenisthemost secularcountryintheworld,andAmericaisacountry ofIndiansruledbySwedes.”Andnowhereisthatdistinctionbestrevealedthaninhealthcare.Inmultiple studies,patientswanttheirphysicianstodiscussspiritualorreligiousbeliefswiththem,andwhilecontrastingstudiesdoacknowledgethatphysiciansconsider thosequestionsimportant,seldomdoesthathappen, evenindiscussionspertainingtoend-of-lifecare— whetherit’sinregardtocontinuingmedicaltreatment orforegoingnon-beneficial,evenlife-sustainingcare. Thus,inmanymedicalsituations,andattheutmost duringend-of-lifecare,thedecisivequestionsarethose ultimatemattersregardingthepatient’sunderstanding ofthemeaningofdeathandwhetherornotthereis somethingbeyondearthlylife.Forpatientswhobelieve morelifeisyettocome,itbecomesamatterofhowto bestcareforthathope,whenmostclinicianseitherdo notsharesuchideologiesorprefertoavoidthoseultimatequestionsentirelyandfocusonthemedicaloptions(or,insomecases,lackthereof).

Theprospectofdeathalmostinevitablypromptsamorefrantic searchforanswerstolife’sultimatequestions:WhoamI?Whatislife? Istheremoretolifeafterdeath?Doeslifehavetemporalmeaningonly oristhereaneternalcharactertolifeitself?AccordingtoDr.Christina Puchalski,“Spiritualityistheaspectofhumanitythatreferstotheway individualsseekandexpressmeaningandpurposeandthewaytheyexperiencetheirconnectednesstothemoment,toself,toothers,tonature, andtothesignificantorsacred."

Whilethesetwoelementsareoftenblurred,theapparenttriumphof spiritualityoverreligioncanoftenresultingeneric,end-of-lifecarethat mightbemoreeasilyprovided,butalsoshouldneverbeasubstitutefor therecognizedreligiouspracticeswhicharetheexclusiveprovinceofordainedclergy.Thosewhoaresodesignatedandendorsedbyhigherauthoritiesaretheonlyoneswhocanlegitimatelyprovidethatreligious caretothosepatientswhobelieveittobecrucialtotheprospectofmore lifetocome.Foranyonetoimitatewhataredulyoutlinedformalaspects toend-of-life(whicharedivinelyendorsedsigns)and,instead,settlefor merelyspiritualorgenericpastoralcare,constitutes,atbest,adereliction ofdutyand,atworst,apretensethatfliesinthefaceofproperlycaringfor thedying,religiouslyaffiliatedpatient.Insuchtragicsituations,patients andtheirfamiliesarevulnerableandatthemercyoftheircaregiverswho areduty-boundtoascertainwhattheirdyingpatientbelievesandhow besttosupportthoseinatimeoftransition,whethertoabetterlifeto comeortofacetheend ofearthlylifewithasmuchpeaceaspossible.

HavingengagedinethicsconsultationandchairedtheEthicsCommitteeatSaintVincentHospitalfornearly20years,ithasbecomeclear tomethatcombiningtheologicaltrainingwithclinicalethicsoftenrevealstheoverlookedimpactthatfaithhasincomplexdecisionsaslife reachesanend.

Amongallthepossiblesituationswhereinlifeor deathdecisionsarenecessary,atleastinprinciple,most physicianswouldagreetoaJehovah’sWitnessrefusalof life-savingtransfusi ons.Lessrecognized,butequally valid,wouldbetheOrthodoxJewishpatientrefusing

palliativecarewhenhiswifeof47yearswasdiagnosedwithcancer.It’sagoodthingheroncology nursedid.Valerie’scholangiocarcinomahadprogressedwith painfulbonemetastasesandafterhospitalizationsandrehab, hernurserecognizedsheneededmoresupportandcoordinationofherincreasinglycomplexcare.Ascaregiver,herhusbandDanielneededitjustasmuch.PamelaLane,NP,and therestoftheoutpatientpalli ativecareteamatUMass guidedthecouplethroughaseriousillnessthatplaceddifferentburdensoneachspouse.Whenherdoctorsrecommendedanewportforastrongerchemotherapydrug,Valerie refusedandtransitionedtohomehospicecare.Theteam helpedDanieltorecognizewhenheneededmorehelpat home,forwhichheremainsgrateful.Valeriediedathome withDanielbyherside:“Itwasbrutal,butIhadhelp”.

8

ANIEL MANZARODIDN ’ TKNOWANYTHINGABOUT

RebeccaKowaloff,DO

Manyseriouslyillpatientsandtheirfamiliesdon’tknowabout Palliativecareorholdmisconceptionsthatleadthemtoavoiditif referred.I fofferedwhatisinsomehospitalsnowcalled“supportivecare”,ateamtohelpthemnavigatethemanydoctorsand medications,toprocesscomplexinformationandtheirfears,and tohelpthemaccessresourcestoeasetheburdenofcareontheir families,manymorewouldacceptsuchareferral.Tomakethat changeforpatients,wefirsthavetochangeourunderstandingas medicalproviders.

UMassPalliativeCareTeam

somethingheespeciallyappreciatedwhenhispainmedication wasbeingtitrated.

Becausecancercareissuchamultidisciplinaryendeavor,perhapsthepalliative careteam’smostimportantroleforDaniel— whoseonlylocalsupportishisbrother—hasbeenas“aliaison between [mypeople].”Theyhave“takenthepressureoff”toallow Danieltofocushisstrengthontreating,andnowbeating,hiscancer—ashisdoctorshavenowdeemedhimcancerfree.Especially amidstthelonelinessleftbyValerie’sdeath,Danielsaysringing thebellasheleftUMass’eighthfloorcancerfreewas“themost upliftingthing.”Danielisfocusingonrecovery,bothphysically andemotionally.Hehasincreasedhisdailywalkfromonemile totwo,andplanstoworktowardthreethisspring,ashealsoadjuststoahouse,andalife,withouthiswife.Valerietaughthimas muchasshecouldabouthouseholdmanagement,anopportunity madepossiblebytheguidancefrompalliativecareandhospice aboutprognosisandprogression.Hecontinuestoturntothepalliativecareteamasaneartolisten,especiallywhenhegetsnew aches andpainsandworrieswhatmightbecausingthem.He wishesmorenursesreferredpatientstopalliativecareas“somethinginbetweennursingandhospice.”Andhewantseveryoneto knowthatacceptingpalliativecaredoesn’tmeanyourtimeiscomingtoanend.Danielis living proofofthat. +

ThePalliativecareteam isalittlemoreattentive, likeyou’retheonly patienttheyhave ” D

PalliativeCare

“AnytimeIhaveaproblem,Icallthem,andtheysolveit… Theyhavemoretimethanaregulardoctor’soffice,theyget rightonit.Whenyou’resick,youdon’twanttobedoingall thatstuff.”Danielsayscomparedtootherdoctors,thepalliativecareteamis“alittlemoreattentive,likeyou’retheonly patienttheyhave.Theyspendtimeonthephonewithyou.” Theyhavestraightenedoutmedicationissueswiththepharmacy,titratedhispainmedicationtoachieveacomfortable painlevel,andgivenmedicationsforsymptomsandsideeffects,suchasinsomnia.“Whenitcomestomeds,theyknow justwhattodoforyou.That’swherethehelpreallycomes in,”hesays.Eventhough hehasreceivedconstantsupport, he’sonlyhadtoseetheminpersontwiceoverthepastsix months,astherestofhisissuesaredealtwithviatelephone, TruePalliativeCare:

WORCESTERMEDICINE MAY/JUNE2022

Danielbarelyhadtimetoprocessherdeathbeforehehad anotherseriousillnesstocontendwith—hisown.Doctors diagnosedhimwithpancreaticcancer,andheimmediately foundhimselfbackinthepalliativecareclinicwithPamela andnowSaraLyon,RN,MS.Hewashesitanttopursue chemotherapyafterValerie’sexperience,buthisteamencouragedhimtodoso.Hispalliativecareteamworkedalongsidehisoncologynurses,medicalproviders,andGInurse navigatorMirandatocheckhisvitals,monitorswellinginhis legs,andmakesurehisportandchemotherapypumpwere functioningproperly.Whenhewashospitalizedwithablood clot,hispalliativeteamvisitedhiminthehospitalforseamlessintegrationofcare,avisitasmuchfortheheartasforthe body,asDanieldoesn’thavechildren.

APatient’sPerspective

hisrestraints,sweatbeadingonhisforehead,whenwe (MCM+VN)firstmethim.Elihadterribleanxiety;his familytoldusthathehadwornholesinthecarpetathome.Anxietypreventedhimfromgettingtreatmentforhiscancerbefore heendedupinthehospital.Theagitationandrestlessnessin thehospitalunfortunatelyledtophysicalrestraintswhichworsenedthesymptomsandrequiredmedicationsthatonlywere partiallyeffective.Thestaffwasexhaustedandtherewasnotime towaste.

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LI* WASROCKING,

Musictherapy(MT)isaperson-centered,evidence-based disciplineinwhichboardcertifiedtherapistsusemusicpurMusicTherapy inPalliativeCare Mary-CarlaMacDonald,MAMT-BCFAMI VandanaNagpal,MDFACPFAAHPM

STRAINING, ANDTEARINGAGAINST

posefullywithinthetherapeuticrelationship.AtUMassMemorialMedicalCenter,itisacollaborativetherapywhichutilizesthepatient’sownposit iveresources,relationshipwith music,andhealthycore-selfincombinationwiththemultifacetedelementsandfunctionsofmusictoachievegreater wellbeing.MThasbeenshowntohelpwithcognition,mood andcanreducepain,dyspnea,andstressresponses(5).Music therapistsarespecializedproviderswithextensivetrainingin providingsupportivecarebecausemusiccanopenupvast landscapesoffeeling,memory,andpain,butcancauseharmif notusedjudiciouslyandcautiouslyinatherapysession.The opendialogue,mutualrespectanddeeplisteningbetweenthe therapistandpatientinformsthemusicselection.Selected musicactsasafriendtothepatientandistheco-therapist— someonefamiliarwithwhomtheyalreadyhavearelationship. Thetherapist’sjobistofacilitateasafespaceandbeawitness manytimestorawemotionwherethepatienthasagencyin decidingthepaceandlengthofthejourney.Thesessionsare som etimeshard,chargedwithdeepmeaning,andothertimes theyarelightheartedandjoyous.Therearealsosessionswhere thesupportismoresubtlelikeduringaterminalextubation wheremusicisinthebackground,providingemotionalsupportandnervoussystemregulationforpatients,families,and eventeams. Palliativecareisteam-basedcareofpeoplelivingwithseriousillnessandtheirfamilies.Itisbeautifulandchallengingat thesametime,aswecarefully step,forsomeamountoftime, intopeople’sliveswhentheyareattheirmosttenderandvulnerable.TherelationshipofpalliativecareandMTmakes sense,astogethertheyenhancethepatient’squalityoflife throughpatient/family-centeredcare,increasedpatientengagement,bettersymptomcontrol,andlegacywork. Musictherapyavailabilityinthehospitalsettingisvariable acrossthenation.AtUMassMemorialMedicalCenter,MThas beenavailableforpalliativecareandneurologypatientsatthe Universitysitesince2019.WeusedMTsuccessfullyforvaried reasonsduringCOVID-19surgesandwehopetofurthergrow theprogramthroughcontinuedsupport.Itisanintegralpart ofthetreatmentplan,whetherthroughopeningtherelationshiporthroughsymptommanagement.WhenColina*woke uppanickedandconfusedafterweeksofintubationandventilatorysupportforacuterespiratoryfailure,thefirstsound thatregisteredtoherandcenteredherwasthatofanongoing musictherapysessioninherhospitalroom.Latershetoldthe teamthatitmadeherfeelsafe;shedidnotknowthatthemusic therapist(MCM)hadbeenworkingwithherthelastfew weeks,butherbrain,body,andheartknewit.Suchcanbethe greatpowerofmusictherapy!

Soundisapowerfulsense.Whensoundisorganizedinto music,itaddressesthelimbicsystemdirectly.Rhythm,tonality (theorganizationofpitchesintomelody),andtimbre(thevoice, color,orqualityofasound)fireuplarge-scaleneuralnetworks throughoutthebrain(1).Byselectivelyusingtheelementsof musictoprimetheneuro-circuitryofresilience,wecaninduce therelaxationresponse(2),createempathicsocialconnections throughincreasedoxytocinfromsingingandimprovisation(3), organizecognitionandbehavior,orientattention,increasemotivation,accessmemoryandintegratepositiveresourcesand copingskills(4).Throughmusic,wecanbypasscognitionand reachpeopleincrisis,evenwithalteredmentalstatusandcommunicationdisorders.Thatiswhy,evenwithintheloudhospitalchorusofalarms,beeps,overheadpages,andhumanvoices, musictherapyispowerfulandeffective.

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 10

“Whatkindofmusicdoyoulistento?Canwelistentogether?”Aquicknodandhighintensitymusicstarted(MCM), matchinghisthrashing:“ImmigrantSong”followedby“Moby Dick”byLedZeppelin.Repeat,repeat!Thiswasaboutgettinga netofsoundaroundandinhimandwiththehelpofmusic, slowlyandcarefullypullinghimintotherhythmandtherefore regulation.Hestartedtoentraintotherhythm;themusic hookedhim.Nextcame“WhiteRoom”byDeepPurpleandhe allowedhimselftolaybackagainstthebed.Carefullyandslowly, thetempoandintensityofmusicdecreasedwithTheWho,Pink Floyd,andmoreZeppelinuntilhiseyesclosedandhisbreathing slowed.Noweveryonecouldbreathe.Themusictherapysessions continuedoverthenextfewdaysallowingfordeescalationof chemicalandphysicalrestraintsandleadingtoincreasedengagementofEliwithhisfamilyandproviders(VN).Thetreatmentplanwasformulatedwithinputfromeveryone,andEli washomebythenextweek.

5.ReidyJ,MacDonaldMC.UseofPalliativeCareMusicTherapyinaHospital SettingduringCOVID-19.JPalliatMed.202111;24(11):1603-1605.PMID: 34382835.

4.Olszewska,A.M.,Gaca,M.,Herman,A.M.,Jednoróg,K.,&Marchewka,A. (2021).Howmusicaltrainingshapestheadultbrain:Predispositionsand neuroplasticity. FrontiersinNeuroscience,15 https://doi.org/10.3389/fnins.2021.630829

3.Keeler,J.R.,Roth,E.A.,Neuser,B.L.,Spitsbergen,J.M.,Waters,D.J.,& Vianney,J.(2015).Theneurochemistryandsocialflowofsinging:Bonding andoxytocin.FrontiersinHumanNeuroscience,9. doi:10.3389/fnhum.2015.00518

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 11 *Patientnameschangedtomaintain anonymity Mary-CarlaMacDonald,MA,MT-BC,FAMI isthemusictherapistinthePalliativeCare DivisionandintheNeurologyDepartment atUMassMemorialHospitalinWorcester, MA.SheisseniorlectureratLesley UniversityintheExpressiveTherapies DepartmentoftheGraduateSchoolsforArts andSocialSciences.Email:marycarla.macdonald@umassmemorial.org VandanaNagpal,MD,FACP,FAAHPMis AssociateProfessorofMedicineattheUMass ChanMedicalSchool,andAssociateChieffor theDivisionofPalliativeCareatUMass MemorialMedicalCenterinWorcesterMA. Email:vandana.Nagpal@umassmemorial.org MusicTherapyinPalliativeCare

musicaltimbre,keyandrhythm.NeuroImage,59(4),3677–3689.

Continued REFERENCES

2.Thoma,M.V.,Marca,R.L.,Brönnimann,R.,Finkel,L.,Ehlert,U.,&Nater, U.M.(2013).TheEffectofMusicontheHumanStressResponse.PLoS ONE,8(8).doi:10.1371/journal.pone.0070156

1.Alluri,V.,Toiviainen,P.,Jääskeläinen,I.P.,Glerean,E.,Sams,M.,&Brattico, E.(2012).Large-scalebrainnetworksemergefromdynamicprocessingof https://doi.org/10.1016/j.neuroimage.2011.11.019

.

AnnaK.Morin,PharmD

1.OxfordDictionary.Palliative.Availableat:

PalliativeCare

12 HE OXFORD

Aretrospectivestudyevaluatingpharmacistintervention andpatientoutcomesinthepalliativecaresettingfoundthat acceptanceofthepharmacist’srecommendationwasasignificantpredictor(p<.001)ofdesiredclinicaloutcome.6Recommendationsmadebypharmacistswithexperienceandtraining inpalliativecareincludedchangeindose,medication,routeor timeofadministrationandinitiatingnewordiscontinuingexistingmedicationtherapy.Overall,90%ofrecommendations wereacceptedwith80%ofpatientsachievingbettermanagementofsymptomssuchasanxiety,constipation,depression, nauseaandvomiting,andpain(6). Improvingpatients’qualityoflifeandmaintainingdignity andcomfortduringthetransitionintopalliativecareareatthe centerofanycareplan.Incollaborationwiththeinterdisciplinaryteam,pharmacists,particularlythosewithspecialtrainingor expertiseinpainmanagementorpalliativecarecanplay avitalroleonthepalliativecareteambyservingaspatientadvocatesandmanagingandimprovingallaspectsofthemedication-useprocessinavarietyofpatientcaresettings. + AnnaK.Morin,PharmD Associateprovost–Worcester/Manchester MassachusettsCollegeofPharmacyandHealthSciences

DICTIONARYDEFINESTERMPALLIATIVE

Theroleofthepharmacistonthepalliativecareteam,which mayalsoincludephysicians,nurses,caregiversandspiritualcounselors,isdiverseandcanencompassanumberofdifferentrolesand responsibilitiesaspartofallaspectsofthemedicationuseprocess.

TheAmericanSocietyofHealth-SystemPharmacistshaspublished guidelinesthatdefinetheroleoftheph armacistengagedinthe practiceofpalliativeandhospicecare(3).Inadditiontoensuring thetimelyprovisionofmedications,pharmacistscanplayakeyrole inpolicyandproceduredevelopment,formularymanagement,and medicationtherapymanagementservices,includingassessmentof medicationplans,educationregardingpossiblesideeffectsordrugdruginteractions,andthedetectionandmanagementofdrug-relatedproblems.Specializedtrainingoradvanceddegreeprograms andpostgraduateyear2(PGY2)residencyopportunitiesareavailabletotrainpharmaciststodevelop,participateinandsupport comprehensiveservicesforpatientsinpainandthosewithpalliativecareneeds(3,4).

REFERENCES: https://www.oxfordlearnersdictionaries.com/us/definition/american_english/palliative;accessedMary29,2022 care.Availableat:https://web.archive. org/web/20031004221126/http://www.who.int/ cancer/palliative/definition/en/;accessedMarch29,2022. thepharmacist’sroleinpalliativeandhospicecare.AmJ HealthSystPharm.2016Sept1;73(17):1351-67. 4.PalliativeCarePharmacist.Resources:careerdevelopment.Availableat:https://www. palliativepharmacist.org/;accessedMarch29,2022. palliativecare.USPharmacist.2016;41(3):HS2-HS5. 6.WilsonS,WahlerR,BrownJ,etal.Impactofpharmacist interventiononclinicaloutcomesinthepalliativecare setting.AmJHospPalliatMed.2011;28:316-20.

WORCESTERMEDICINE MAY/JUNE2022

3.HerndonCM,NeeD,AtayeeRS,etal.ASHPguidelineson

2.WorldHealthOrganization.WHOdefinitionofpalliative

5.Demler,TL.Pharmacistinvolvementinhospiceand

T

as“amedicineormedicaltreatmentthatreducespainwithoutcuringitscause”(1).TheWorldHealthOrganization furtherdefinespalliativecareasateam-basedapproachthatispatient-,family-andcaregiver-centeredandfocusesonimproving qualityoflifebyprovidingrelieffrompainandaddressingphysical, psychosocial,emotionalandspiritualneeds(2).Palliativecarehas evolvedsignificantlyoverthepastseveraldecadesandcanbeprovidedasthemaingoalofcareorintandemwithcurativetreatment.

cistscanassessandmakerecommendationsforalternative routesofmedicationadministrationtoimproveadherenceand overallbioavailability.Ifnecessary,somedrugscanbecompoundedintosolutions,topicalcreamsorointments,orparenteral,rectal,ortransdermaldosageformulations(3,5).

Aninterdisciplinaryteamisrequiredtoaddressthevariousneeds ofthepatientreceivingpalliativecare,andbecausemedicationtherapyisusuallyacorepartofapalliativecaretreatmentplan,this teamincludespharmacistsinbothinpatientandoutpatientsettings.Hospicecareisanextensionofpalliativecarethatprovides compassionatecareforpeopleinthelastphasesofincurablediseasesothattheymayliveasfullyandcomfortablyaspossible(3).

Palliativecareregimensarehighlyindividualizedtomeeteach patient’sneeds.Workingasamemberofthepalliativecareteam, pharmacistscansupportthedevelopmentofindividualizedtreatmentregimensandhelptooptimizebothpharmacologicandnonpharmacologicmanagementtoimprovepatientoutcomeswhile reducingcostsandunnecessarymedications.3,5Aspartoftheir trainingandresponsibilities,pharmacistsassesstheappropriatenessofmedicationordersandensurethatthepatientreceivessafe andeffectivecareinatimelymanner.Manymedicationscanpose administrativechallengesforpatientswithaninterruptioninoral access,duetonauseaandvomitingorothe rgastrointestinalissues thatmaydevelopsecondarytomanychronicconditions.PharmaTheRoleofthePharmacistonthePalliative CareTeamSymptom/PainManagement

T

WhenpatientsrequireRRT,astrongnurse-patient relationshipcommences.Patientsspendseveralhours aweekwiththenurseovermanymonthstoyearswhile receivingdialysis.Uponinitiationandcontinuationof RRT,patientsoftenfeeltheirqualityoflifehasbeen negativelyaffectedandfearexpressingthesefeelings totheirfamilycouldimpacttheir relationships.The dialysisnursebearswitnesstothediscomfortpatients experience,fromthephysicalsideeffectsoftheprocedure(nausea,hypotension,cramping,dizziness,tiredness)tothepsychosocialchallenges(relationships, transportation,finances,diet,lifestyle).Manydialysis nursesexperiencemoraldistressrelatedtotheburden dialysisplacesonverysickpatients.Thenurseoften servesasaconfidantetothepatientwhileobserving thepatient’sburdenandfeelshelplessastohowtosup-

Intermsoflong-termtreatment,patientswith ESRDrequirerenalreplacementtherapy(RRT)tosustainlife.WhiletherearemoreoptionsforRRTthan everbefore,eachoptionhasassociatedrisksandbenefits,andmustbefittedtotheindividual.Patientsdisproportionatelychoosein-centerhemodialysis requiringthepatienttoreceivetreatmentatacenter withintheircommunity.Unfortunately,thetruthis thatthedialysisscheduleisdemanding,andthepatientwillspendaminimumoftenhoursperweekconnectedtoadialysismachinetoremovewasteandextra fluidfromtheirbody.Followingthein-centerhemodialysisprocedurepatientsoftenfeelexhaustedand willrequireseveralhourstorecover.Frominitiation throughthecontinuationofRRT,patientsarefaced withmanychallengesthatcanleadtodecreased qualityoflifeanddepression.Infact,approximately25%of theESRDpopulationsuffersfromdepression(2).

REFERENCES

FormalizingaPalliative ApproachtoDialysisCare

Theneedtoformalizeapalliativeapproachtodialysiscarehasreceived recognitionandendowmentbymanythroughoutthehealthcareindustry.The useofpalliativecareforpatientswithESRDremainsanareaofopportunity togreatlyimprovequalityofcare.Healthcareorganizationsmustworktogether todelineateresources,createprocesses,andsubstantiateexpectationsforadvancedcareplanningandpalliativecaresupportforpatientswithESRD. + AshleyRotella,BSN,MSNistheHemodialysisandIVResourceNurseManageratUMassMemorialMedicalCenterandaDNPstudentatUMassChan MedicalSchool,TanChingfenGraduateSchoolofNursing.

1.NationalInstituteofDiabetesandDigestiveandKidneyDisease. (2021,September).KidneydiseasestatisticsfortheUnitedStates.KidneyDiseaseStatisticsfortheUnitedStates|NIDDK(nih.gov)

2.KimmelPL,CukorD,CohenSD,PetersonRA.Depressioninendstagerenaldiseasepatients:acriticalreview.AdvChronicKidneyDis. 2007;14(4):328-334.doi:10.1053/j.ackd.2007.07.007

portthepatientintheirveryrealdistress.Themoraldistressofthenurse couldbereducedwiththeadditionofapalliativeapproachtodialysiscare forthepatient.

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 13

Tofurthervalidatetheconceptofmoraldistressamongdialysisnurses, recentlyapatientwithlate-stagedementiaandco-morbidities,including chronicrespiratoryfailurewithapermanenttracheostomyandapermanentpercutaneousendoscopicgastrostomytube,wasinitiatedonhemodialysis.Thepatienthadacentralvenouscatheterastheirprimary accessandexperiencedinfectionsduetoadherenceissueswithcathetercare protocols.Duetobaselineconfusion,thepatientrequiredrestraintsaround theclocktoavoiddislodgementofdevices.Uponarrivaltodialysis,thestaff wouldmedicatethepatientwithbenzodiazepinestosafelyandadequately performthedialysisprocedure.Additionally,thepatientresidedinanursinghomeandhadpassiveinvolvementfromfamily.Thedialysisnursing stafffeltasignificantamountofmoraldistresswhilecaringforthispatient astheyfeltcontinuationofdialysiswascausingmoreharmduetoconcerns forthepatient’ssafetyandmalalignmentwiththepatient’sgoalsofcare. Thedialysisnursesadvocatedforadvancedcareplanningforthispatientto reducepainandsuffering.Inshortorder,apalliativecareconsul twas placedandultimatelythedecisionwasmadetodiscontinuedialysis.This caseisoneofmanythatcomethroughthedialysisdepartmenteveryyear andisemblematicofthemoraldistressamongnursesanddemonstrates thenurse’sroleasapatientadvocate.

3.Abdel-Rahman,E.,Metzger,M.,Blackhall,L.,Asif,M.,Mamdouhi,P., MacIntyre,K.,Casimir,E.,Ma,J.,&Balofun,S.(2021).Associationbetweenpalliativecareconsultationandadvancedpalliativecarerates:A descriptivecohortstudyinpatientsatvariousstagesinthecontinuumof chronickidneydisease.DOI:https://doi.org/10.1089/jpm.2020.0153

AlthoughtheNationalKidneyFoundation(NKF)recognizestheneed forboardcertifiedpalliativecareproviderstobeapartofthepatient’s.this population.Therateofpalliativecareconsultsamongpatientsdiagnosed withCKDandESRDissubstantiallylowerthanpatientsdiagnosedwith cancerordementia(3).Aboardcertifiedpalliativecareproviderthatis trainedtocareforindividualsdiagnosedwithaseriouschronicillness wouldbeatremendousadditiontothepatient’scareteambyenhancing thepatient’squalityoflifeandreducingsuffering.

HEREAREAPPROXIMATELY 786,000individualsinthe UnitedStateslivingwith ESRD(1).Theburdenofthisdisease oftenhasaprofoundimpactonthepatientandtheir family.Someofthisburdenisrelatedtothesymptoms ofESRD,theESRDtherapy,symptomsofthepatient’s comorbidities,andsideeffectsfrommedications.For thepatient,theseencumbrancessignificantlyimpact theirqualityoflifeincludingtheirindependence,relationships,interests,andprofession.Patientsoftenexperienceamultitudeofemotionsandfeelings throughouttheirdiseaseprocess.

AshleyRotella,BSN,MSN

WORCESTERMEDICINE MAY/JUNE2022

14 TWAS AUGUSTOFMYINTERNYEARWHEN I FIRSTMET

withMrs.T,apleasantyoungfemaleinhermid-50swith ahistoryofalcoholuse.Shehadbeenadmittedovernight forsevereabdominalpain.AnupperGIendoscopyconfirmed alcoholicgastritis.Asshebeganfeelingbetter,westartedplanningforherdischarge.Idiscussedherresultsandmyconcerns abouttheeffectalcoholwashavingonherhealth.ShesaidIhad givenheralottothinkaboutandthatshewouldavailherselfof the providedresourceswhenshewasready.

Itwasabout7a.m.onacoldDecembermorninginthemedicalICUwhenImetMrs.Tagain.Shehaddevelopedsymptomatichyponatremia,inpartresultingfromcontinuedalcohol use.Iwasdisappointed,butnotterriblysurprised.Isharedmy previousexperiencetakingcareofherwithmyICUteam.Asher hyponatremiaimproved,shewastransferredtothemedicalfloor andsubsequentlydischargedinstableconditionafterthreedays.

AboutfivemonthslaterIwasconductingsign-outforapatientwithcirrhosisandsevereC.diffcolitis.Yes,Mrs.Thadreturned.When,howandwhyhadshedevelopedcirrhosis?AsI enteredherroom,IwasstunnedtoseeanowictericMrs.Twith generalizededema,swollenparotids,andaclearlyalteredmentalstatusinthethroesofhepaticencephalopathy.Itturnedout thatshehadbeenadmittedthreetimessinceourlastencounter intheMICU.Shehadcontinuedtodrinkandwasnolongera candidateforlivertransplant.Sinceherdiseaseprocesswasadvancedandshedidnothavecapacityformedicaldecisionmaking,thepalliativecareteamcameonboard.Wecontactedher healthcareproxy—herbestfriend,Ms.V—whotoldusshehad notseenorheardfromMrs.Tinthepastthreemonthsdespite multipleattemptstogetintouch.Iwasnotpreparedforwhat Ms.Vhadtosaynext.ItturnsoutMrs.Thadbeenbattlingdepressionforafewyears,butithadworsenedoverthemonthsas maritalturmoilhadresurfaced.Shehadtakentoheavydrinking asacopingmechanism.HerhospitalizationinAugusthad servedasawakeupcallforMrs.Tandshehadbeendetermined tocutdownonherdrinking.Herfather,whowasherpillarof strength,hadbeenhelpingherthroughthis.Thingsspiraled downwardquicklyafterhissuddendeathfromaheartattack andshewentbacktodrinking.ThelasttimeMs.Vhadseenher bestfriendwasduringhe rfather’sfuneral.Thingsgoteven worseafterherdivorcewasfinalized,andshelostthecustodyof herthreechildren.Shehadbecomehomelessthereafterand latermovedinwithafriend.Icouldnotbelievehowmuchshe hadbeenthrough.Hercurrentmedicalissuesseemedtobejust thetipoftheiceberg.ItfeltlikewewereputtingaBandAidon abullethole,sotospeak.ItstruckmehowlittleIreallyknew aboutMrs.T,howunawareIwasofherstrugglesandhowin WhatMrs.TTaughtMe

myignoranceIhadfailedtoseewhyherhabitsremainedas so.Ms.VtoldusthattheMrs.Tsheknew,herbestfriend, wouldnothavewantedanythingheroicandhercodestatus waschangedtoDNR/DNI.IaskedMs.VifMrs.Twouldhave wantedustocontactherfamilyorfriends.Perhapstheywould wanttoknowthatMrs.Twasinthehospital.Iwasunableto findanyphonenumbersinthesystemapartfromhers.But Ms.Vsaidthatherfamilydidnotwantanythingtodow ith hernordidherfriends.Idonotremembermuchaboutwhat Ididthatafternoonafterourmeetingconcluded.Imusthave reachedhomesomehow.Istruggledtryingtofallasleepthat nightasamyriadofthoughtsoccupiedmymind.HadIknown whatshewasgoingthrough,couldIhaveintervenedsomehow?Wouldthingshaveturnedoutanydifferentlyifallthose timesshehadbeenadmittedtothehospital,Ihadtakencare ofherandlearnedmoreabouther?MaybeIcouldhaveasked psychiatrytoseeher.MaybeIcouldhaverequestedoursocial workertohelpwithherdisposition.Or,maybe—justmaybe —shewouldhaveconfidedinmeaboutwhatwasgoingonin herlife.Ifeltaverystrongsenseofguilt,asifIhadfailedher. HowcouldIhavenotseenthiscoming?HowcouldIhavenot anticipatedthis?Asmedicalprofessionals,wearetrainedto savelives.Then,howdidwefailher?HowdidInotseethis sooner?Evenwithallthesemodernmedicinesandinterventions,whyistherestillsolittleshecouldbeoffered?Howcould webesohelpless?Icouldnotkeepmyselffromimagininga scenarioinwhichsomeinterventionhadhappenedandthe outcomewasdifferent. Mrs.Twentontodevelopprogressiverenalfailureandwas dischargedtohomewithhospice.Tothisday,Ifeelastrange sensationinmychesteachtimeIpassbytheroomthatshelast occupied.Strangely,perhapsbysomeunknownforces,noneof thepatientsthatIhavetakencar eofsincehasbeenassigned thatroom.ButItakesomesolaceinthinkingthatshewas comfortableandwithherbelovedfriendinthedaysthatfollowed.WheneverIamfacedwithapatient’sdemise,Ifeellike apartofmegoeswiththem.Deathistheinevitabletruththat noonewantstonecessarilythinkabout.Workinginthemedicalfield,especiallywiththepandemic,Ihavecometorespect theroleofpalliativecare—theteamfacedwiththedailychallengesofprovidingcomfortneartheendoflife.ItwasMrs.T whointroducedmetothisindispensablemedicalfieldandfor thisIamforevergratefultoher. + PawinaSubedi,MD,PGY3InternalMedicineResidency, St.VincentHospital I

PalliativeCare

PawinaSubedi,MD

ConnieGe,BA,isa4thyearmedicalstudentattheUMass ChanMedicalSchool.Email:connie.ge@umassmed.edu D

“Good”meantthatthecliniciangenuinelylistenedtofamilymembers’ questionsandansweredthemdirectly.Theyrespondedwithempathy. Theyexplainedtherelevantclinicalpictureandleftspaceforquestions. Theypartneredwithfamilymembersandtreatedthemlikedecision-makingequalsbyrecognizingthefamilymember’sexpertiseonandknowledge ofthepatient.Incontrast,during“bad” encounters,clinicianssteamrolled throughtheconversationorsometimesmadeinsensitivecomments.Other times,cliniciansappeareduncomfortableanddodgeddifficultquestions. Ipickeduponmomentswherethewordsspokenwerenotthoughtfuland couldhavebeenimproved.IpromisedmyselfthatIwouldworktobea bettercommunicator,toinspireconfidenceinmypatientsandtheirfamilymembers,andtosupportthemthroughthesetoughdecisions.

Duringmyresearch,I’veseenthatevenseasoned clinicianshavemomentswhentheymayfalter.For now,Iamtryingtoapproachtheseinteractionswith greaterhumilityandempathy,knowingthattheexpertinwhatfamiliesorpatientsarelookingforare thefamiliesandpatientsthemselves.Thereisso muchtobelearnedfromthem,andIknowIhavea lifetimetoshapethatexperience. +

OF CAREFAMILY

Fromtheprimaryteam,weknewthatAnna’s workupwouldincludeatissuebiopsyandfurtherimagingtostageherdisease.IcheckedinwithAnna laterthatmorning.Iaskedifsheunderstoodthenext stepsandwhatquestionsshemayhavehad.

Inoddedasshecontinued.Itriedtorecallthe specificsofherscanandthereport,thinkingthatshe mayhavewantedtoknowmoredetails.

meetingasafirst-yearmedicalstudent,theconversationwasso rawandhonestthatIstillrememberseekingrefugeintheICU supplyclosetafterwardtocollectmythoughts.Ihadnevertalkedabout thevalueoflifeortheunderstandingofdeathsoopenly,norhadIany personalexperiencewithdifficulthealthoutcomesinfamilyorfriends. Rather,Iwasjustthereaspartofaresearchprojectcenteredonexaminingclinician-familycommunication,andthereforefoundmyselfsitting onthesidelinesofdozensofthesemeetingsoverthenextfewyears.

CommunicatingintheICU WhataMedicalStudentLearnedFrom ResearchingClinician-Family CommunicationforPatients WithCriticalIllnesses ConnieGe,MS4

Ihavethoughtbacktothisinteractionmanytimes since.OneconclusionI’vedrawnisthat,inpushing myselftoprovethatIcouldbeagreatcliniciancommunicator,Iwasbuildingonanunstablefoundation. Inmyearlydaysoflisteningtofamilymeetings,Ihad startedidentifyingwhatmadeforempatheticcommunication,butIdidnothaveenoughpracticeleadingthisconversationmyself.I’vesincerealizedthat trueknowledgecomesfromexperience,andthisexperiencetakestimetodevelop.

Aspartofourproject,wewantedtoexplorethedifferentwayscliniciansleadfamilymeetings.Inmyrole,Iwasabletoseehowavarietyof clinicianscommunicatedandIgainedinsightintotheanswersthatfamiliesrespondedbesttoandfoundhelpfulindecision-makingfortheir lovedones.Withthisexposuretogoals-of-caremeetings,Istartedtodefineformyselfwhatapproacheswere“good”or“bad.”

Then,ImetAnna(namedchangedforprivacy).Annawasayoung womanwhowasadmittedfordifficultybreathing.Shewasworriedshe hadaninfectionor,worse,aheartattackliketheoneherfath erhadrecentlysuffered.

“WhatI’mwonderingis—andIknowyoumight nothavethisanswer—butwhatdoesthatmean?”I stoppednodding.IknewIshouldhaveanticipated thisquestion,butsomehow,Ididn’t.Annadidn’t seemtonoticethatI’dfrozen.“Doesitmeanthatit’s reallybad?”Shelookedatme.“AmIgoingtodie?”

Ifoundoutthefollowingdaythatshehadmetastaticovariancancer.

“I’mokay,thankyou,”shesaidimmediately.She paused,“Well…TheytoldmethismorningIhavea massinmystomach.Iguessthatthismeansit’scancerandit’sspreadtootherplacesalready.”

Ourformalanalysisoftheclinicianandfamilyconversationslargely supportedtheanecdotalevidenceIwasstartingtocompileandinternalize.Duringmyclinicalrotations,Idrewonmyresearchexperiencesto examinesimilarcomplicatedconversationsinothersettings,hopingto learnhowtoleadthesemeetingsmyself.Asmyclinicalyearprogressed, Itookamoreactiveroleinconversingwithpatientsandtheirfamilies.I startedtomakesomesmallstrides:apatientthankingmeforanswering theirquestions;anattendingcomplimentingmyabilitytorelayinformationandexplainmedicalconcepts.Iattributedthisprogresstomyearly exposuretogoals-of-caremeetingsandIbegantoseehowmyactions coulddirectlyhelppatientsandtheirfamilies.

WORCESTERMEDICINE MAY/JUNE2022 PalliativeCare 15

URINGMYFIRSTOBSERVATIONOFAGOALS

Ican’trememberthespecificsofwhatIsaid,other thantellingher,“Idon’tknow”and“We’llhavemore answerssoon”beforeretreatingfromherroom.Ido, however,recallveryvividlyhowashamedIfeltinthat moment.Ihadseensomanyseriousillnessconversationsjustlikethisoneandknewtheliteraturewellin termsofwhatclinicianresponsesaremosthelpfulto patients.However,nowconfrontedwiththesequestionsdirectly,Iwasunabletoaccessthatknowledge andinsteadfailedtohelpapatientwhowassearchingforanswersinthefaceofterribleuncertainty.

HowcantheMedicalSocietyhelp?Letusthinkit throughandevolvea“WorcesterCountyPlan.”Iwholeheartedlybelievethatnursinghomesand/orsmallsanatoria—supplementedbypublicsupport,ifneedbe—areall partoftheanswer. NeglectandInjury PeterMartin,Esq.

+ E.L.Hunt TerminalCare forIncurable CancerVictims WorcesterMedicalNews Vol.XII,No5,Nov.1947.Pg8 B.DaleMagee,MD,WDMSCurator Caretakersofthe Elderly:Risk,

LegalConsult 16

D

OESPLACINGAVULNERABLEELDERATHIGHERRISKOF illnessconstituteaninjurytothatperson,leadingtocriminalliability?Areadministratorsoflong-termcarefacilities

Anintelligentapproachtotheproblemisonthehorizon,althoughwe’restillafarcryfrom“adequateterminal care.”Notmanyunderstandtheextentoftheproblem, partlybecauseofprideandsensitivity,andpartlybecause inMassachusettscancerisnotyetareportabledisease.

Itisnowthethirdyearthisworkhasbeenunderway;so far,some500caseshavebeenaidedaccordingtotheirspecificneedsbyhomenursing,hospitalization,transportation fortreatment,grantstosupplementincome,purchaseof apparatus,foodandmedicines,andcareinnursinghomes.

FromtheArchives

criminallyliableiftheymakepolicydecisionsthatincreaserisksto residentsofsuchfacilities?Lastyear,atrialcourtdecisionregardingtheSoldiers’HomeinHolyokeansweredbothquestionsinthe negative.Thedecision,reachedinthecontextoftheCovid-19pandemic,shouldreassureeldercareprovidersandfacilitiesthattheir effortsto renderadequatepatientcarewillnotbeconsideredcriminallyblameworthy,particularlywhenimplementinginfectioncontrolmeasures. ThematteraroseduringtheearlyweeksoftheCovid-19pandemic,whentwoadministratorsattheSoldiers’Homedecidedin thefaceofstaffshortagestomergetwodementiahousingunits. TheCommonwealthindictedtheadministratorsonfivecountsof elderneglectandpermittingseriousbodilyinjurytoanelder,in violationof MassachusettsGeneralLawschapter265,sections 13K(d1/2)and(e).Theadministratorsfiledmotionstodismiss theindictments.TheHampdenCountySuperiorCourtheardthe matterinNovemberof2021anddismissedbothindictmentsin theirentirety.

ThedefendantswerethesuperintendentandthemedicaldirectoroftheHome,neitherofwhomdirectlyprovidedmedicalcareto theHome’sresidents.AsthepandemicdevelopedinMarchof 2020,theyadoptedinfectioncontrolmeasurestoreduceresidents’ riskofcontractingCovid-19.Aparticularlydifficultpopulation wasdementiacareresidents,whocouldnoteffectivelycomplywith handwashing,socialdistancing,andmaskingrequirements.These residents,includingthefiveresidentsallegedlyharmedbythetwo administrators’decisiontomergethedementiaunits,wouldcommonlywanderthroughthecommonareasoftheirunit,andgointo otherresidents’rooms.TheMassachusettsDepartmentofPublic HealthtoldstaffattheHomethatitwasnotappropriatetoconfinetheseresidentswithdementiatotheirroomsevenasaninfectioncontrolmeasure.Priortothemergerofthedementiaunits,all fiveofthedementiaresidentshadalreadybeenexposedtooneor moreotherresidentwhohadtestedpositiveforCovid-19.

Fundshavealsobeenallottedtotheonlytwoinstitutions inthestatededicatedtothistypeofcase.Manysuchcases arehelplessandimpoverished,requiringaidinallfacets. Othershaverelativelyminormaterialneeds,yetalldeeply needtheassuranceofneighborlyloveandconcernfortheir plight.

presidenthas,withcharacteristicclarityofthoughtand kindurge,toucheduponneedsandopportunitiesfor constructiveserviceasasocietytothecommunitieswhich supportusandofwhichweareapart.

Itseemsthatnexttothedoctors,socialserviceworkers andhomenursingorganizationswouldbeasclosetothe problemasanyone.Theywerecalledintocounseland underrigidagreementtoreporttheiruseoffundsandtentativeallotmentsweremadeonasnearlyastatewidebasis ascouldbeattainedthroughresponsiblegroupswillingto cooperate.

Whennursesbegantonotshowupforworkduetofearofinfection,andarequestforNationalGuardstaffingassistancewas unsuccessful,theadministratorsorderedthemergeroftwounits, withresidentswhohadasymptomaticCovid-19segregatedintoa diningroomoutfittedwithbeds.Thefivedementiaresidents weremovedintothisdiningroom,astheyhadalreadybeenexposedtoCovid-19.Grandjurytestimonydidnotestablishthat I

FEVER ,” OUR

WORCESTERMEDICINE MAY/JUNE2022

Thepresidentnodstooneofourmembers—whonot onlyrecognizesaproblembutdoessomethingaboutit.Dr. Dunlapthrewtheweightofhisinfluenceandliberallygave histimetotheAprilcampaigninsupportoftheAmerican CancerSociety(MassachusettsDivision)anditseemsonly fairthatoursocietyandthepublicshouldknowsomething ofwhattheraisedmoneyisdoingfortheincurables.

NHISINITIALEDITORIAL,“AUTUMN

“WhyshouldImakethemfeeluncomfortable?” someoneelseshoutedout.Theroomwaspalpably energized.Notoneoftheparticipantswantedtolet theirpatientsknowtheactualstatusoftheirhealth. Someoftheparticipantsactuallyseemedangeredby myquestion. Ithenaskedanotherquestion: “Ifthiswasyou, wouldyouwanttoknow?”

Thecourtfoundtheneglectargument“lessweak”becausethestatutorylanguageprovidesthatasubstantiallikelihoodofharmcreatedbya caretakeroftheelderlybyitselfmayconstituteneglect.However,because priortothemergeroftheunits,thefiveresidentshadwanderedthroughoutalloftheunits,theyhadalreadybeenexposedtoCovid-19positive residents,increasingthelikelihoodofharmtothem.Therefore,theunit mergeritselfcouldnothavecreatedthesubstantiallikelihoodofharm.

“Yes”wasanearlyuniversalanswer.

EWISH HEALTHCARE INTERNATIONAL (JHI)

Inthepast,ifIhadaskedtheparticipantsasimplerquestionsuchas,“Whatmedicationdoyouusuallyusefirstforhypertension?”Iwouldgetafew handswithaquietroom.Butnotthistime.

Thefirstresponsefromtheaudiencewas,“No,I wouldtellthemthattheyweregoingtobealright.”

+

PeterMartin,Esq.isapartneratBowditchandDewey.

Thecourtwentontorulethatneitherthesuperintendentnorthemedicaldirectorwere“caretakers”ofanelder,asrequired bythestatutes.Evidencepresentedtothegrandjurydidnotestablishthateitherindividual rendereddirectorsubstantialcaretoanyofthefiveresidents.Thestatute definingtheHome’ssuperintendentandmedicaldirectorstatesthatthe formeristobetheadministrativeheadoftheHomewithauthoritytoappointamedicaldirector,whointurnhasresponsibilityovertheHome’s medical,surgicalandoutpatientfacilitiesandmakesrecommendationsto thesuperintendentregardingphysician,nurse,andmedicalstaffappointmentsattheHome.ThecourtdeclinedtoadopttheCommonwealth’sargumentthatfacilityadministratorsratherthanactualcareproviders couldbeheldcriminallyliableundereitherstatutecitedinthiscase.

wasanoutstandingNon-GovernmentalOrganization(NGO)thatwouldcontactsmallmedicalcommunitiesandaskiftheyneededassistance withmedicaleducation.ThentheJHIwouldsend volunteerstopresenttalksonthetopicsrequested andclinicsheldwiththelocalproviders.Manyofthe missionsweretocountriesintheformerSoviet Union.Agroupof30physicians,nurses,andhealthcareaides,workingwithJHIwouldpresentthelectures.Thesamelectures.wouldthenberepeated, usuallyfivetosixtimestodifferentgroups.

J

anyofthefivesufferedfrommalnourishmentordehydrationwhilein themergedunit.

“Ifwerevealedtheirchances,theywouldbecome moredistressedanddiesooner,”anotherobserver replied.

Moldovawasperhapsthepoorestofthecountries intheformerSovietUnion,andthecoordinatorthere hadrequestedalectureonpatientcommunication.I wastobethepresenter.

Mytopic:“Talkingtoyourpatient.”ThefirsttimeI gavethistalk,Ibeganbyaskingthequestion,“Ifapatientyouknewhadadvancedcancer(andwhosedeath wasquiteplausible)askedyou,‘doctor,doIhavecancer,andwillIdiefromit?’howwouldyoureply?”

ThismatteraroseinthespecificcontextoftheCovid-19pandemicand underspecificstatestatutes,butitholdsmoregenerallessonsforthose providingeldercareservices.First,thedecisionreiteratesthecommonsensenotionthatadministrativepersonnelarenotdirectcaregivers.Second,thedecisionprovidesyetanotherexampleofhowcausationina complexmedicalinstitutioncanbedifficulttoprove.Third,itarticulates theideathatincreasedriskisnotitselfbodilyinjury.Allthreenotions supportarealisticlevelofliabilityforthoserunninghealthcarefacilities fortheelderly.

TalkingtoPatients: ALectureSeries inMoldova PaulL.Hart,MD CaretakersoftheElderly Continued CONTINUEDONPAGE 18 WORCESTERMEDICINE MAY/JUNE2022 AsISeeIt 17

OnceIposedthequestionandwaitedforreplies, Inoticedachangeintheroom.Theparticipantswere suddenlymorealert,someseemedanxious,andotherstalkedtotheirneighbors.

Grandjuriesmustfindprobablecausethatthedefendantscommitted theapplicableoffense.Thisprobablecausestandardislessthanthatrequiredtosecureaconvictionbutismorethan“meresuspicion.”The statutesinthismattermadeitunlawfulfora“caretakerofanelder”to “wantonlyorrecklessly”permitseriousbodilyinjurytoanelder,orto wantonlyorrecklesslycommitorpermitanothertocommitabuse,neglectormistreatmentofanelder.The“seriousbodilyinjury”allegedhere werefirst,anincreasedriskofcontractingCovid-19andsecond,dehydrationandmalnutrition.

ThecourtquicklydismissedthenotionthatincreasedriskofcontractingCovid-19wasaseriousbodilyinjury:“theremustbeadiscernible ‘bodilyinjury’inthefirstinstance.”Understandardcanonsofstatutory interpretation,theCommonwealth’spositionherewouldfailtogive meaningtoeachwordinthelegislationandwouldrenderthe“bodilyinjury”languagesuperfluous.Astotheallegeddehydrationandmalnutrition,theevidencepresentedtothegrandjurydidnotcreatemorethana meresuspicionthatthefiveresidentssufferedfromtheseconditions.

Theratheruniformresponsesfromouroverseas colleaguesdemonstratedthatnot alldoctorsarefollowingwhatis standardpracticeintheUnited States.Withoutcategorizingdifferentapproachesasrightor wrong,thedifferencesdounderlinewhatourdutyistoourpatientsfacingtheendoflife,and whywewouldconsiderapproachingourpatientsinamannerdifferentfromthatweourselves wouldprefer. + PaulL.Hart,MD,RetiredFamily Physician,Sterling,MA Email:paulhart46@yahoo.com

ShervinRezaeiwasinspiredtowritehisessay,“ReflectionsontheCostofStatins,” byaquotefromCanadianphysicianNormanBethune:“Medicine,aswearepracticingit,isaluxurytrade.Wearesellingbreadatthepriceofjewels.”

U.S.expendituresonhealthcarenowexceed$4trillionperyear,yetourhealthcare systemfacesanexpandingnumberofchallenges.Understandingthesechallengeshas becomeintrinsictothepracticeofmedicine.Incorporatinghealthpolicyconceptsinto themedicalstudentcurriculumattheUMassChanMedicalSchoolhaslongbeena priority.Insupportofsuchefforts,overthepast25ye ars,theMeyersHealthCare Institutehascoordinatedaneducationalprogramforallthird-yearstudentscalled, “HealthPolicyandthePracticeofMedicine,”servingasanintroductiontoabroad rangeoftopics,includinghealthcarecoverage,financing,organization,delivery,quality,access,andequity.Studentslearnfromnationalleadersinhealthpolicyandparticipateinsmallgroupdiscussionswheretheyconfrontanddebatereal-lifesituations inwhichpolicyandthecareofpatientsintersectandsometimescollide.

EDITORIALNOTE:

Coincidingwiththe25thanniversaryoftheMeyersHealthCareInstituteandthe 25thyearofthisimportanthealthpolicyeducationalinitiative,theInstitutesponsoredanessaycontestforthirdyearUMassChanMedicalSchoolstudentsfocusingon personalexperiences(clinicalorotherwise)relatingtoacontemporaryhealthpolicy issue.Inthisissueof WorcesterMedicine,theessaysofthefirstandsecondprizewinnersarepublished.

Wehopeyouenjoythesetwoessayschosenfrommanyoutstandingsubmissions. WeareespeciallyappreciativeoftheeffortsofourMeyersHealthCareInstituteessay contestselectioncommittee:Drs.AngelaBeeler,DavidBrumley,RobertKossack,and LindaWeinreb. + JerryH.Gurwitz,MD RonAdler,MD TheMeyersHealthCareInstitute(formerlyMeyersPrimaryCareInstitute)wasestablishedin1996bytheUMassChanMedicalSchool,ReliantMedicalGroup,andFallon Healthasajointendeavorwithamissiontopursueresearchandeducationalactivities toimprovethehealthandhealthcareofpopulationsandcommunities.

Continued 18

TalkingtoPatients

WORCESTERMEDICINE MAY/JUNE2022 AsISeeItEssayContest

Inheressayentitled“AFreshStart,”MeganHansensharesanexperienceduringa yearofoncologicresearchattheNationalInstitutesofHealth.Megandescribeswhy beingabletoprovidenotonlyfreeoncologiccarebutalsowraparoundservicestostabilizeanuninsuredpatient’shousing,supporthermentalhealth,andaddresshersubstanceuse,“feelsabitlikeamiracleto(her)—butitshouldn’t.”

TheMeyersHealthCareInstitute HealthPolicyEssayContest

TheMeyersHealthCareInstituteisajointendeavorbetweentheUMassChanMedical School,ReliantMedicalGroupandFallonHealth.Itsmission,asnotedonitswebsite,isto conductinnovative,population-basedresearchandeducationtogenerateanddisseminate newknowledgeandpromoteevidence-basedhealthcareacrossthelifespanforthebenefitof ourcommunityandbeyond.Partofitsmissioninvolveseducationofmedicalstudents,as describedbelow.IncollaborationwiththeMeyersHealthCareInstitute,WorcesterMedicine ispleasedtopublishtheentriessubmittedbythefirstandsecondplacewinnersofthisyear’s essaycontestformedicalstudents.Theseessaysprovideuswiththepersonalperspectives andopinionsoftwomedicalstudentsatthestartoftheirmedicalcareers,providinguswith insightintotheirsolutionsforthechallengeswefaceinhealthcaredelivery.

AsIprobedabitmore,noneofthe providerswereawareofKublerRoss andherworkonstagesofdyingin terminallyillpatients.Itturnedout tobecommonpracticeamongthese providersnottopresentthepatient withthefactsabouttheirsituation. Isuggestedthattheymaywantto considerachangeintheirapproach andgavesomeinformationabout howthissituationwasapproachedin theU.S. Irepeatedthislectureanumberof times.ThenexttimeIbeganbysayingthatwhatI wasgoingtodiscuss wasalittledifferentfromhowmedicinewaspracticedintheircommunity.Thisdidnotwork;Iencountered thesamereplyandlevelofanxietyin theroom.Iwentasfarastosaymy talkmaybecontroversial,butplease lookattheseideasasjustideasand notarecommendationtochange yourpracticepattern.Still,theresponseremainedthesame. Ihadalwaysconsideredthese replieswrongandnotinthebestinterestofthepatient,untilIbegan writingthisarticle.

WORCESTERMEDICINE MAY/JUNE2022 EssayContestWinners 19

“Ihavetogo,”shesaid,andmovedtotaketheIVoutofher arm.MyattendingplacedherhandonTanya’sarmandsmiled reassuringly.

MyattendingexplainedtoTanyathatshehadatypeofcancerthatcanaffecttheskinandinternalorgans(includingthe GItract,causingbleeding)andthathercancerwasduetoher HIV.Weexplainedthatitwascurablewithappropriatetreatment,butthatshewouldneedchemotherapyandantiretrovirals.Inaddition,shewouldneedtotakeantipsychoticsandwe wouldreferherforadrugtreatmentprogramifshewasinterested.Asmyattendingoutlinedthestepsahead—including inpatienthospitalization,chemotherapy,medications,psychiatryconsults,socialworkconsults,scans,blooddraws,paperwork—Tanyalookedincreasinglypanicked.

“Holdon—Ihaven’tgottentothegoodpart,”sheexplained. SheproceededtotellTanyathatmedicalcare—andallrelatedservices—attheNIHarecompletelyfreeofcharge.Not onlywouldshenotreceiveanybillsforherhospitalstay,but herchemotherapy,antiretrovirals,antipsychotics,andevery outpatientclinicvisitforaslongassheneeded carewouldhave noassociatedcosts.Shedidnotrelaxentirely,butIsawTanya’s facechangeassherealizedthemagnitudeofwhatthiscould meanforher.Overthesubsequentweeks,IsawTanyaslowly begintoimprove.Thelesionsfadedasthechemotherapytook effect,herhemoglobinstabilized,herparanoiawanedasher newantipsychoticregimentookeffect,andwebegantobuild trust.Sheeven,withsocialwork’shelp,madeplanstoreconnectwithherfamilywhensheleftthehospital.Shewasdischargedafewweekslater,optimisticaboutherplanstolive withhersister.

Ioftenthinkaboutthestarkcontrastbetweenmedicalcare atmostinstitutionsintheU.S.andmedicalcareinaplacein whichpatientsknowtheywillnothavetopay.ForTanya,a womanforwhomthesystemhadoftenbeenunkind,hercancerdiagnosisgaveherasecondchanceandallowedherto begintotrustthemedicalsystem.Shewillneedmorethanfree medicalcare,andit willbetooeasyforhertofallthroughthe cracksinacountrywithoutastrongsocialsafetynet.However, adiagnosisthatwouldhavesurelybeenabankruptcysentence forher asitisforover 860,000 peopleintheU.S.annually(1) —becameachanceforhertomakecontactwithaninstitution abletoliftherup.Yet,mostpeopleinthiscountrydonothave accesstogovernment-runclinicaltrialsthatmakesuchcarea realityattheNIH,andtherearemillionsofpatientsayearwho areindireneedofpaymentreform.

Atransitiontoasinglepayersystemwoulddiminishoverheadcosts—savingsthatcouldbepassedontopatients—re-

Severalmonthslater,IwasafewweeksintoayearofoncologicclinicalresearchattheNationalInstitutesofHealth(NIH). Mysenseofaweattheplacehadnotyetwaned—andreally,it stillhasn’t.AsmyattendingandIwalkedtoseeanewpatientin theoncologyunit,Ifoundmyselftakingitin:thestate-of-theartfacilities,theclean,light-filledatmosphere,andthelarge, spacioushospitalroomswereastarkcontrasttothenoisy,overcrowded,understaffedhospitalwhereIhadcompletedmyInternalMedicinerotationjustafewmonthsago.

WeknockedonthedoorandintroducedourselvestoTanya. Shewasonly30,butshewasgaunt,herfacelinedwithprematuresignsofage.Hereyesdartedfranticallyaroundtheroom, wideandunblinking.Herhandsneverstoppedmoving,nervouslypickingatherskinortappingherleg.Abagofbloodwas hangingfromanIVpole,slowlyinfusingintoherarm.Aswe gotcloser,Icouldseeseverallarge, violaceouslesionsonherface, arms,andthinlegs.TanyahadHIVandKaposisarcoma,acancerthatcanariseinpersonswithimmunodeficiency.Kaposiis rareinwomen.Itwas,unfortunately,nottheonlyunluckything tohappentoTanya.Shehadbeenhomelesssinceage14,inand outofshelters,andhadtroublestayinginoneplaceduetoschizophreniaanddruguse.Shehadnotspokentoherfamilyinyears andhadnosupportsystem.Shewashospitalizedbecauseshe hadbeenvomitingbloodandwasnowsymptomaticallyanemic andwasreferredtotheNIHforpotentialparticipationinaKaposiclinicaltrial.

HealthPolicyandthePracticeofMedicineEssayContest UMassChanMedicalSchoolandtheMeyersHealthCareInstitute

WASEXHAUSTED.THE COVID-19 PANDEMICHADMADE mythirdyearofmedicalschoolamorechallengingexperiencethanIhadanticipated.Balancingmytimebetween caringforpatientsandstudyingforstandardizedexamsforced metomakedecisionsthatdidnotsitwellwithme.Imissedmy family,andIworriedaboutthem.Ifelttrappedinahospital whilefeelingpulledtoworkonclimatechange,orracialinequity, oranyofthemostpressingchallengesof2020.Ifeltineptand helpless.IwasperhapsmostexhaustedwiththeU.S.healthcare paymentsystem.IwatchedpatientsbargainovereveryCT,every blooddraw,doingmentalmath,determininghowmucheach testwouldsetthemback.Ievenpassedanafternoonwithapatientwhowasdyingfromcancerandspenthisfinaldayscalculatinghowmuchmedicaldebthewouldbeleavingbehind.Ifelt thedollarsandcentsslowlydrainingthehumanityfromafield thatwouldotherwisebesowonderfullyhuman.

AFreshStart MeganHansen

1st PLACE I

WORCESTERMEDICINE MAY/JUNE2022 EssayContestWinners 20 ducemedicalbankruptcies,improvehealthoutcomes,andmake healthcarefinancingmoreequitable(1).Thiswouldhaveprofound impactsinthefieldofoncology,wherepatientshaveanestimated 2.65timeshigherrateofbankruptcythanpatientswithoutcancer(2).Further,uninsuredpatientswithcancerare1.5times morelikelytodiewithinfiveyearscomparedtotheirinsured counterparts(3).Thisstratificationofaccesstocareandclinical outcomesbyincome isanastoundinginjusticeandanindictment ofthefractured,profit-drivenpaymentsystemintheU.S. IsawTanyaincliniclastweek.Shehasbeentakinghermedicationconsistently,isparticipatinginoutpatientrehabilitation, hasstablehousing,andisworkingtofindemployment.Icannot sayforcertainwhatwillhappentoher.Theworldisnotdesignedforhertosucceed,andifonethinggoeswrong,herentire houseofcardscouldcomecrashingdown.Whilesubstantial paymentreformhasthepotentialtomoveourhealthcaresystemtowardequitablehealthpromotion,itwillalsobeimportanttopairsuchreformwithastrongsocialsafetynet;patients likeTanyacannotbehealthyiftheylackstablehousing,clean airandwater,nutritiousfood,andstrongcommunities.Being abletoofferTanyanotonlyfreeoncologiccarebutalsowraparoundservicestostabilizeherhousing,supporthermental health,andaddresshersubstanceusefeelsabitlikeamiracleto me—butitshouldn’t.Everysinglepatientdeservestohavetheir healthpromotedateverylevel,andeveryproviderdeservesthe joyofhavingafieldcenteredonfactsandfiguresbecomeone notonlyaboutscience,butalsoaboutcompassionandlove— thewayitshouldhavebeenallalong. + MeganHansen UMassChanMedicalSchoolClassof2023 Email:megan.hansen@umassmed.edu

3.WardE,HalpernM,SchragN,CokkinidesV,DesantisC, BandiP,etal.AssociationofInsurancewithCancerCare UtilizationandOutcomes.CA: ACancerJournalforClinicians.2008;58(1):9-31.

HealthPolicyandthePracticeofMedicineEssayContest UMassChanMedicalSchoolandtheMeyersHealthCareInstitute 2nd PLACE AFreshStart Continued Reflectionsonthe CostofStatinsOf BreadandJewels ShervinRezaei “O

REFERENCES

1.DrasgaRE,EinhornLH.WhyOncologistsShouldSupport Single-PayerNationalHealthInsurance.JournalofOncologyPractice.2014;10(1):7-11.

Bytheendoftheday,theresidentandIfinallygeta chancetogrababitetoeat.IthinkbacktoMr.Jonesand whatIcouldhavedonedifferently.Iopenhischart,andindeedheisuninsured.IopenhismostrecentlipidpanelresultsandplugawayontheASCVDrisk calculatoronmy phone.WithanLDL-Cof230,maximallytoleratedhighintensitystatinsarerecommended.Fromearlierinour clerkship,IrecalltheWalmart$4prescriptionlist,anessentialservicetoensuringMr.Jonesnotonlystartshisnecessarytreatmentbutcontinuesitlongenoughtosustain lowerLDL-Clevelsandreducehiscardiovascularrisk.Irepeatundermybreath“rosuvastatin20to40mgs,atorvastatin40to80mgs”asIsearchthelistandscrolldownto cholesterol-relatedmedications.Rosuvastatinisnotthere, butatorvastatin40mgis!IcallourlocalWalmartpharmacy,butloandbehold,theyareoutofstock.Themedicationisinhighdemand,theysay.Whilemyresident continuestotapawayatherkeyboard,Itellher,“Ourpatientearlier,Mr.Jones,withthehighLDL,itturnsouthe’s

2.RamseyS,BloughD,KirchhoffA,KreizenbeckK,FedorenkoC,SnellK,etal.WashingtonStateCancerPatients FoundToBeAtGreaterRiskForBankruptcyThanPeople WithoutACancerDiagnosis.HealthAffairs. 2013;32(6):1143-52.

H,I DON ’ TKNOW.YOU’LLHAVETOCALLYOUR insuranceaboutthat.”TheresidentIwasfollowing gavethisfinaldisclosuretoMr.Jonesbeforemakingapromptexitfromtheroom.Itwaswellpastmid-day onabusyafternoonclinic,andwewerealreadythreepatientsbehindschedule.Whiletheresidentfeverishlyfilled atemplateforhernotes,Ienteredthenextroom,greeted thepatient,andsetupinterpretationbyphone.Nowonmy thirdweekofmyFamilyMedicineclerkship,Istartedto growaccustomedtotherapidflowofafullclinic.Withthis patientsetup,IlefttheroomtogatherabriefH&Pforthe patienttwodoorsdown.ButasIamcrossingfromonehall tothenext,Iseethepatientwhoweadvisedtocalltheirinsurance.Hestoodinthewaitingroom,shufflinginplace withimpatience.AsIcontinuetorushbyhurriedly,Itake intherestofhisbody’sexpression:hisbrowfurrowed,one handwithhisphonetohisear,theotherwithsomecash wrinkledandpokingoutbetweenhistautfingers.AsIcontinuepast,findthenextroom,andreadthepatient’sintake form,Iaskmyself:doesMr.Joneshaveinsurance?

uninsured.”IexplainaboutWalmartandthestatinsituation. Thepricejumpedfroma$930-daysupplyatWalmartto$236 forbrandnamestatins,a2,600%increaseforthesameeffectiveformulation.

“Goodworkcheckingonthat,”shesayswithalightsmile, “butthereisonlysomuchwecandowith15minutes.Wecanset upatele-healthappointment,orchatwithhimwhenweseehim next.”Ilefttheclinicthatdaywithmyownbrowfurrowedand fingerstaut,reflectingonthe15minutesofcounselingwithMr. Jonestoday,andhowitsimpactwoulddifferfromthenext15 minuteswehavewithhim.

(4)

IfMr.Joneslivedinacountrywithadifferenthealthcare system,perhapshewouldhavehadthe“bread”neededto lessenhistreatableailment.Instead,wehavenormalizedthis

unduefinancialburdenonourpatients.Shiftingblamefrom ourselvescontributestotheperpetuationofthisstatusquo. Perhapsournext15-minutevisitcouldbespentdiscussinghis lifestyle,hisfamilylife,andthethingsthatbringhimjoy.Itis onus,currentandfuturehealthcareproviders,toensureour healthcareactivitiesexistmoresotoserveourpatientsthanto serveprivateeconomicinterestswhichmayinterferewiththe provisionofoptimalcare. + ShervinRezaei UMassChanMedicalSchoolClassof2023 Email:shervin.rezaei@umassmed.edu REFERENCES 1.TikkanenR,AbramsMK. U.S.HealthCarefromaGlobal Perspective,2019:HigherSpending,WorseOutcomes? CommonwealthFund.PublishedonlineJan.2020. 2.GayJG,etal.MortalityAmenabletoHealthCarein31 OECDCountries:EstimatesandMethodologicalIssues, OECDHealthWorkingPapers,no.55(Organisationfor EconomicCo-operationandDevelopment,Jan.2011) 3.AndersonGF,HusseyP,PetrosyanV.It’sStillthePrices, Stupid:WhytheU.S.SpendsSoMuchonHealthCare, andaTributetoUweReinhardt.HealthAffairs.Jan2019; 39(1):87–95. 4.PattersonR.NormanBethune:hiscontributionstomedicineandtoCMAJ.CMAJ.1989;141(9):947-953.

WORCESTERMEDICINE MAY/JUNE2022

21

WhileIcontinuemytraininginmedicine,healthcaredelivery,policy,andanentireworldofdata,pathology,andevidence-basedpractices,Iturntowardtheworldofphilosophy toguidemymoralcompass.IthinkofthelateCanadianthoracicsurgeonandhumanitarian,NormanBethune.Aprolific surgeoninhisyouth,Dr.Bethunecontributedtothedevelopmentofnumeroustools,includingtheBethuneRibShearsstill inuseinoperatingroomstoday.Overthecourseofhiscareer, hebecamedisillusionedwithhiscolleagues,andincreasingly concernedwiththesocioeconomicstateofmedicine.Onhis humanitarianvisionformedicine,hestated: “Medicine,aswearepractisingit,isaluxurytrade.Weare sellingbreadatthepriceofjewels....Letustaketheprofit,the privateeconomicprofit,outofmedicine,andpurifyourprofessionofrapaciousindividualism...Letussaytothepeople not'Howmuchhaveyougot?'but'Howbestcanweserve you?’”

EssayContestWinners

Justlikethepatientexcerptabove,thestarkoverspending withinU.S.healthcarehasbecometheacceptedstatusquoof ourcurrentsystem.Expendituresfromthetop11Organization forEconomicCo-operationandDevelopment(OECD)countries in2018revealedthattheU.S.spends16.9%ofitsGDPon healthcare,doublingtheOECDaverageof8.8%(1).WhendissectingU.S.totalper-capitaspendingbypublicvs.privatesector,per-capitaspendingfromprivatesourcesexceedsthatofany othertop11OECDcountry.IntheU.S.,privatespending,includingbothvoluntarypaymentofhealthinsurancepremiums andemployer-sponsoredhealthcareplans,exceededthenext highestcountryinprivatesectorspending(Canada)bymore thanfivetimes(1).Onecouldarguethatsuchprivatesector spendingallowsforourhealthcaresystemtocontinuetobecome oneofthemostadvancedintheworld.However,ratesofmortalityduetopreventableandtreatablecauses(e.g.,diabetes,cardiovasculardisease,certaincancers)arealsothehighestinthe ReflectionsontheCostofStatins

Asanewcomertotheday-to-dayworkingsofmedicine,Ihad witnessedacardinalproblemthatcontinuestomuddlehealthcaredelivery;beforeuswehavetheimpossibledichotomyto provideboththebest,mostadvancedcare,andthemostwidely accessibletotreatthemostpeople.Therearemanyinourfield whowouldfeelathomeclaimingtotreatpatientsononesideof thiscoinortheother,butotherswhomayfeeltheyareableto provideboth.Ontheseextremeends,onecouldconsideranacademicphysicianataquaternarycarecenter,performingexperimentaltreatmentsandspecializedsurgeries.Ontheother end,onecanimagineaprimarycarephysicianinaruralsetting, theonlydoctorformilesandtaskedwitheverythingfromphysicalexamsandtraumatodeliveringbabies.Idonotmeanto argueastowhetherfundsarebestchanneledtowardadvancing themostrefinedtreatments,ortowarddeliveringthecurrent goldstandardtothemostpeople.Both,intheirownright,hold merits,andlikelyarebalancingofthisfundingisneededtoadvancehealthcaredelivery.Mycontentioniswitheconomicprofit incentivesandinfluencesonallsides(insurancecompanies,administrativeredundancies,pharmaceuticalventures)becausein combination,thisleadstotheexorbitantbloatedhealthcare spendinginournation.

Continued U.S.(2).ManyOECDcountriesusethismetricasameasureof overallhealthsystemperformance(3).Recentglobalhealth systemsdatacontinuetodemonstratewhatwehaveallcome toaccept:wepaythemost,withthelargestchunktowardour privatesector,forworseoutcomes.

WORCESTERMEDICINE MAY/JUNE2022 SocietySnippets 22 WorcesterDistrictMedicalSociety226th AnnualOration “What’sTheFutureofHealthcareQualityandSafety?” HeldonFebruary16,2022 Orator:KimiyoshiKobayashi,MD,MBA,SFHM ChiefQualityOfficerfor UMassMemorialGroupandMedicalCenter 2022AnnualBusinessMeeting HeldonApril13,2022 KeynoteSpeaker SenatePresidentEmeritaHarrietteL.Chandler WDMS/MMS Community ClinicianoftheYear Award Recipient: JuneR.O’Connor,MD WDMS Editor’sAward Recipient: RobertW.Sorrenti,MD WDMS President’sAward Recipient: RobertW.Finberg,MD (Posthumously) AnniversaryMembers 50YearMember PeterS.Chen,MD 25YearMembers MichaelW.Potter,MD RichardA.Rosiello,MD KarenF.Rothman,MD

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