Hospice Patient and Family Information

Franciscan

Hospice and Palliative Care

About Hospice

Hospice: A Special Kind of Care• ATeamApproachtoCare• HospiceandInsurance• FranciscanHospiceHouse• HospiceinNursingHomes• AMessagetoCareGivers• HelpingChildrentoCopewith

DeathandGrief

Activities of Daily Care (BASIC TIPS)• Hygiene• MouthCare• SkinCare• Nutrition• FluidsandDrink• Elimination• BodyMechanics

Symptom Control• Pain• Nausea• Breathing• Anxiety,FearandDepression

Approaching Death• SignsandSymptoms• DealingwithGrief• PersonalRecordProfile

Funeral Planning• DataandPreferencesfor

ConsiderationFollowingDeath• Funeral/MemorialPlanning• TenFreedomsforCreatingMeaningful

FuneralCeremonies

How to Support Franciscan Hospice

Table of Contents

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Franciscan Hospice Team Members

PrimaryNurse(s)

SocialWorker

HomeHealthAide(s)Homemaker

Chaplain

VolunteerCoordinator

Volunteer(s)

ComfortTherapist(s)

BereavementCoordinator

RegisteredDietitian

Pharmacist

OccupationalTherapist

PhysicalTherapist

SpeechTherapist

OtherTeamMembers

NAME TELEPHONE

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Hospice uses a highly qualified,

specially trained team of professionals

and volunteers working together

to meet your physiological, psychological, social,

spiritual and economic needs.

Theword“hospice”datesbacktomedievaltimes,whenahospicewasaplacewherewearytravelerscouldfindshelterandtemporaryrespitefromtheirjourneys.Themodernconceptofhospiceisacomprehensivemodelofcarewithservicesspeciallytailoredtomeettheneedsofpeopleandfamilieswhoarefacinglife-limitingillness.

Whilethemeaningofhospicehasevolvedthroughtheyears,thesebasicvalueshavenotchanged:

•Peoplewhofacetheendstagesoftheirlife duetoillnessdeservetolivetheirfinaldays totheirfullest,surroundedbythepersons andthingswhichtheyholddear.

•Familymembersandfriendsdeserveto receivethesupporttheyneedtocopewith themanychangesandchallengesthey willface.

Tosupportandupholdthesevalues,hospicehasadoptedthefollowingphilosophyandbasicprinciples:

Concentration of Care Thefocusofhospicecareisonthequalityofremainingliferatherthanonlyextendinglife.Therefore,hospiceworkstoprovideeffectivepainmanagementandsymptomcontrol.

Hospiceoffersacoordinatedprogramofcarefromthetimeofadmissionthroughbereavement.Hospicetrainsandfacilitatesfamilyandothercaregiverstomeettheirlovedone’sneeds.

About Hospice

Patient and Family as the “Unit of Care” Hospicerecognizesthatpatients,familiesandcaregiverswillbeaffectedbyalife-limitingillness,needingthesupportofthehospiceteam.

Hospice Interdisciplinary Group Hospiceusesahighlyqualified,speciallytrainedteamofprofessionalsandvolunteersworkingtogethertomeetthephysiological,psychological,social,spiritualandeconomicneedsofpersonsfacingtheendoflifeandbereavement.

Interdisciplinary Group Plan of Care Thehospiceinterdisciplinaryteamcollaboratesonanon-goingbasiswithapatient’sphysiciantodevelopandmaintainanindividualizedplanofcarebasedontheneedsofthepatientandfamily.

Access to Care Hospiceoffersservicesandsupporttoallpeopleandtheirfamiliesregardlessofage,gender,nationality,creed,sexualorientation,disability,diagnosis,availabilityofaprimarycaregiverorabilitytopay.

I t i s t h e

M i s s i o n o f

F r a n c i s c a n

H o s p i c e

To provide dignified,

comfortable care to

the terminally ill of

our community

To assure the

long-term mental and

physical health and

well-being of survivors

To enhance the

care of all dying in

the community by

education and

example

To serve as a symbolic

reminder to the

community that death

is a part of life for all

Coordination and Continuity of Care Hospicepersonnelareavailable24hoursaday,sevendaysaweekforphoneconsultationsorhomevisits.Hospiceserviceswillusuallybeabletofollowthepatientiftheircaresettingchanges.

Youandyourfamilyareunique,andthewayinwhichyoudealwiththisstageoflifewillalsobeunique.FranciscanHospiceunderstandsandsupportsyourindividuality.Wearecommittedtohelpingyouidentifyyourspecificneedsandfindwaystomeetthoseneeds.

Wearebornwiththewilltolive.Thisstrongdrivehelpsyouandyourlovedonesmakeeachdaythebestitcanbe—filledwithqualitiesoflove,care,concernandsupport.WeatFranciscanHospicewilldoallwecantohelpyoufindpeaceofmindinyourownwayandinyourowntimeframe.

Thismanualisdesignedtoprovidepracticalinfor-mationtohelpyouandyourfamilyinthedaysandmonthsahead.Wehopethisinformationwillbehelpfultoyou,andweurgeyoutocallourofficeoraskourpatientcarestaffaboutanyquestionsyoumighthave.

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Hospice A Special Kind of Care

Hospice Nurse •Assessesyourmedicalneedsandcoordinates withyourphysicianandotherteammembers toachievephysicalandemotional comfort.

•Provideseducationtoyouandyour caregiversconcerningtheneedsofseriously illindividuals.

•Assessescurrentneedsformedicationand equipment,andanticipatesfutureneeds.

•Provides24hourconsultationand/orhome visits,forproblems,questions,concernsor needs.

•Recognizesthisnewexperiencebylistening toyou,teachingyou,helpingyoutoclarify yourchoices,andbyprovidingasenseof normalcytothisexperience.

Does the nurse talk about this life limiting illness?Thenurseprovidestheopportunitytotalkabouttheimpactofthisillnessonyouandthosewholoveandcareforyou.It’suptoyoutodecideiforwhenyouarereadytosharethosethoughts.Hospicevaluestheexperienceofpreparingforone’sowndeathinwaysthatareimportanttoyouandyourfamily.

When does the nurse visit?Nursevisitsdependonyourneeds.Thefrequencyandlengthofthosevisitschangewithyourneeds.YourprimarynurseworksMondaythroughFriday.On-callstaffareavailable24hoursadayforyoureveningandweek-endneeds.Whenyoucalltheofficeafterhours,youwillbeconnectedtoanansweringservice.Theansweringservicewillhaveahospicenursecallyoubackwithin10minutes.Yourhospicenursewillexplainthisinmoredetailatthetimeyoubegintoreceivehospicecare.

Physician Services •ServesasakeymemberofyourHospiceteam.

•ProvidesmedicaldirectiontotheHospice teaminthedevelopment,provisionand revisionofyourplanofcare.

•Providesphysicalandemotionalsupportto youandyourfamilyduringtheterminal phaseofthisillness.

•ParticipateswithyourHospicecareteamin themanagementofpainandothersymptoms withagoalofcomfortcare.

•Coordinateswithyourprimaryphysicianwith regardtoyourcareplan.

May I keep my regular doctor?Yourregulardoctorusuallywillcontinueasyourprimarycarephysician.YourphysicianwillcontinuetoprovidemedicaldirectiontotheHospiceteamwithregardtoyourmedications,treatments,changesinyourcareplanandanyotherquestionsorconcernsyou,yourfamilyortheHospiceteammay

havethataffectsyourcare.TheHospicenurseisprimarilyresponsibleforkeepingyourdoctorinformedandup-to-dateonhowyouaredoing.Occasionally,theHospicemedicaldirectorforFranciscanHospiceassumescareforyouifyoudonothaveaphysicianoryourregulardoctorcannolongerfollowyourcareneeds.Occasionally,aFranciscanHospicephysicianassistsyourregularphysicianbyconsultationwithregardtoyourplanofcare.

A Group Approach to Care

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Hospice Social WorkerPeopleoftenmistakenlyidentifythesocialworkerasanagentofagovernmentorstateagency.Inactuality,thesocialworkerisatrainedcounselorwhowillhelpyouprioritizewhatisimportanttoyou.Thesocialworkersupportsyouandyourfamilyemotionallyandcanfacilitateindividualorfamilyconferencestoprovidesupporttoallwhoareaffectedbyyourillness.TheSocialworker:

•Educatesandmakesreferralstoresourcesto meetneedssuchascaregiving,homemaking, respite,foodandshelter,legalassistance,and funeralarrangements.

•Worksonsuchthingsaslifereviews(recalling memoriesofyourlife)orleavingalegacyof audioorvideotapes,writtenmessagesor photos.Theseactivitieshelptoaccentuate thejoysandlandmarksofyourlife.

•Helpsyouexaminerelationshipsyoumay wanttostrengthen.

•Supportsyouandyourfamilythroughthe anticipatorygriefprocessandhelpsto prepareyoursurvivorsforthegriefthey willexperiencelater.

When does a social worker visit?Visitsvarypatienttopatient.Thesocialworkerwillvisitonaschedulethatwillattempttomeetyourandyourfamily’sneeds.

Hospice ChaplainThechaplainisanintegralmemberofyourhospicecareteamandisavailabletosupportyouemotionallyandspirituallyduringthispartofyourlife.

Youmayaskthechaplaintohelpwithlifechang-es,decisionmaking,relationships,lifevaluesandmattersoffaith,troublingfeelingsorwhateverismostimportanttoyou.Thechaplaincanbeapartnerinprayerorsimplyagoodlistenerduringdifficulttimes.

Whileallchaplainshaveanadvancedministerialeducation,theyalsoreceivespecializedtraininginhospicecareandtheuniquespiritualissuesthatcanarisewithseriousillness,lossandgrief.

What about my family and friends?Thechaplainistheretosupportyourlife,thatmeanssupportingthepeopleyoucareaboutandthosewhocareaboutyou.Thisisanewexperienceforallofyou.

What if I'm not religious?Thechaplain’sfirstconcernisthatthistimeofyourlifebeassatisfyingandasrichaspossible.Religionmayormaynotbeapartofthat.Beliefinahigherpowermaynotevenbeapartofthat.Onlyyoucansaywhatmakesyourlifegood.Thechaplainfollowsyourleadandistheretosupportwhatevergivesyourlifemeaning.

What if I have my own church?Thechaplainwillbehappytoassistyourreligiousorspiritualcommunityorfaithleader,ifyouwish,orjustprovidealittleextrasupport.Sometimesapersonwillbefarawayfromtheirhomechurchwhentheycomeonhospiceservice.Insuchcasesthechaplaincansometimesarrangetobringthesacraments,ritualsorprayerservicesofyourtraditiondirectlytoyourhome.

The hospice

interdisciplinary

group collaborates

on an on-going basis

with a patient’s

physician to develop

and maintain an

individualized plan

of care based on

the needs of the

patient and family.

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Who decides if I need a chaplain?Youdo.Ifyoufeelunsure,youmaywanttoscheduleaget-to-know-youvisittoseeifyouandthechaplainareagoodfit.Youmaydiscontinuechaplainvisitsatanytime.

Requestforchaplainsupportmaybemadeatthetimeofadmissiontohospiceserviceoranytimeafterwardsthroughyournurse,socialworkerorcertifiednurses’saide.

When does the chaplain visit?Afterthefirstvisitthechaplainwillaskifyouwouldlikemorevisits.Thefrequencyofvisitswilldependonyourpreferenceandthechaplain’sexistingschedule.

Will the chaplain help with funeral or memorial services?Thechaplainwillbegladtohelpyouoryourfamilymakeplansfortheseimportantevents.However,chaplainsarenotavailabletoofficiateattheseservices.

Certified Nurses AideProvidingassistancewithpersonalcareistheprimaryresponsibilityoftheaide.Theaidevisitsdependingonyourneeds.Theaidemayhelpwithshampooing,shavingandothergeneralgroom-ingaswellaschangingbedlinenstomakeyoufeelcleanandrefreshed.Theaidecanalsotrainotherfamilymemberswhocareforyou.

How long will the aide stay in my home?Theaide’svisitusuallylastsanhour.Ifyouneedmorecareinthehome,asktospeakwithyoursocialworker.Yoursocialworkercanassistyouinobtainingextracaregivinginthehome.

What supplies will the aide need?Acleanwashclothandseveraltowels,soapforbathingandanyothertoiletriesyounormallyusewouldbehelpfultohaveready.Theseitemsmightincludeshampoo,cornstarch,toothbrush,toothpaste,lotion,andacomborbrush.

How are aide services initiated?Yourhospicenursewillarrangeforaideservicestobegin.Astaffmemberwillcallyoutosetupavisitingschedule.Thenursingassistantwillprovideyourhospicenursewithanychangesrelatedtoyourcomfortthatheorsheobserves.Thenursingassistantmayprovidepersonalcareandassistwithactivitiesofdailyliving.

Bereavement CounselorTheBereavementcounselorprovidessupportandeducationtohelpfamiliesunderstandtheirgriefjourneyafterthedeathofalovedone.Thebereavementprogramprovidesfollow-upfor16monthswhichincludesthefollowing:

•Periodicmailingstoprovideinformation, supportandinspiration

•GrowingThroughGrief-Eight-weeksupport groupsofferedquarterly

•AnnualSpecialEvents SpouseLossBrunch(February) LivingwithParentalLoss(May) LivingwithGriefandtheHolidaysSeminar (November) CelebrationofLife(December) NewlyBereavedDrop-inGroup(monthly)

•ContactwithaBereavementCounselorfor thoseseekingadditionalsupport

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How do I get a volunteer?Makearequestforavolunteertoyourhospicenurseorsocialworker.

Other MembersOtherspecialistsprovideservicestoyouonaconsultingbasis.Asneeded,yourhospicenursewillreferyoutothefollowingservices:

•Pharmacist.Canassistyou andyournursewith medicationeducationand symptommanagement

•Dietitian. Canassistyouand yourfamilytomeetyour nutritionalneeds

•Physical Therapist.Canhelp youandyourfamilymaintain yourmobilityandstrength

•Occupational Therapist.Can assistyouandyourfamilyto adaptyourhometoprovide youasmuchindependence aspossible

•Speech-Language Pathologist.Canassistyou withswallowingproblems andfindwaystohelpyou communicate.

How do I receive the periodic mailings and contact from bereavement staff?WhenapatientisadmittedtoHospice,theSocialWorkerwillprovideyouapacketofinformation.Includedinthispacketisavioletcoloredform,“FranciscanHospiceSupportMailings”.Pleasecompletethisformandreturnittoahospicestaffmembertoensureyoureceiveourmailings.

How much does it cost to receive bereavement support?TheFranciscanHospiceBereavementProgramisincludedasacoveredbenefitundermostinsuranceplansandisalsomadepossiblethroughdonationstotheFranciscanFoundation.

Hospice VolunteerAvolunteerprovidesemotional,physical,andspiritualsupporttothepatientandtheirfamilydependingontheneed.Volunteersgothroughextensivetrainingtounderstandtheneedsandexperiencesofterminallyillindividualsandtheirfamilies.Volunteersmay:

•Staywiththepatientsothatcaregiversmay leavethehomeforshortperiods,rest,orto accomplishothertasks

•Providetransportationfordoctor appointmentsandotheroutings

•Helpwithshoppingandassistingwith householdtaskssuchaspreparinglightmeals

•Assistwithchildcare,writingletters,reading tothepatientorrunningerrands

•Providecompanionshiptoboththepatient andcaregiversinhomesandnursinghomes

How many hours can a volunteer help?Avolunteerwillusuallyhelpfromonetofourhoursaweek.Whenavolunteerisassigned,thetimeandschedulewillbemutuallyworkedoutbetweenthepatient,familyandvolunteer.

You and your

family are unique,

and the way in

which you deal

with this stage of

life will also be

unique.

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Comfort TherapiesWeareproudtobethefirstHospiceinthecommunitytoexpandourservicetoincludemassage,music,art,relaxationandaromatherapies.Theprogramisfundedthroughthegenerosityofthecommunityandthepatientsandfamiliesweserve.Thesecomforttherapieshelptodecreasepainandincreasequalityoflife.

Youmayselectoneormoretherapiesforamaximumofeightsessions.Massagetherapyistheonlyonewhichrequiresanorderfromyourdoctor.

Thesetherapiesareavailabletoallpatientswithoutcharge.Ifyouwouldliketoparticipateinmeetingthecostofthecomforttherapies,adonationtotheHospiceprogramwouldbegreatlyappreciated.

Therapeutic MusicMusictouchesthesoulinwayswordscannot.Musiccanstimulatememoriesofpastyearsandeventsthatcanhelpsummarizelifeinameaningfulway.Musiccanhelpdecreasedepressionandupliftspiritstobringpeace.Byhelpingthepatientrelac,musicassistsmedicationstoworkmoredirectly.Franciscan'sMusicPractitionersprovidelivemusictomeetthetasteandindividualneedsofeachpatient.

Art TherapyArttherapyisarefugefromstress.Itcanbeadiversionfrompainandanxiety.Artexpressesemotionsandincreasesqualityoflife.Itstimulatesmemoryandprovidesrelieffromisolationandboredomasitincreasesself-esteemanddignity.Theartworkisalegacyforfamilymembersandfriends.Thearttherapistprovidesartmaterialandteachesactivitiesthataretailoredtothepatientandhisorherphysicalabilities.

Whatkindofartactivitiesmaybeused?Collages,cutsnowflakes,claywork,painting,watercolorandacrylic,weaving,papermache,useofchalk,crayons,markersandbeadandjewelrymaking.

Massage TherapyAmassagetherapistgentlystrokesskinandmusclesprovidinggreatcomforttothebody,particularlyforthosewhoareoftenisolatedfromtouch.Massagecanpromoterelaxationbydecreasinganxietyandrelievingstress.Massagecanalsodecreasepain,improvesleepandreducefeelingsofloneliness.Themassagecanbeaslightasnecessaryforcomfort.Massagemayalsodecreaseswellingandimprovecirculation.Lotions,oils,scentsandmusicareoftenusedtoenhancethemassageexperience.

Are male and female massage therapists available?Yes.Atyourpreference,amaleorfemalemassagetherapistwillbeprovided.

May massage be given to clothed patients? Absolutely.Thepatient'scomfortisofprimeimportance.Massagemaybegiventothosewhoarefullyclother.

Is massage helpful in the last few days of life?Yes,touchisalmostalwayscomforting.

Relaxation TherapyThehypnotherapistisaspecialistinrelaxationtherapy.Ahypnotherapistlistenstoyourconcernsandsymptomsandhelpsyoutocreateimageswhichhelpyourmindandbodytorelax.Relaxationtherapycanhelpcontrolpain,nausea,andothermedicalsymptoms.Itcanhelpdecreaseanxiety,worriesandfears.Theexperienceissimilartodaydreaming,relaxingorimagining.

Do I have to be hypnotized during a relaxation session?No,onlyifyoudesire.Youwillremainawareandincontrolatalltimes.

Will relaxation honor my religious beliefs?Thetherapistwilltailoryoursessiontofitinwithyourbeliefsystem.Thetherapistwillattempttousewordswhichhonoryourreligiousfaith.Feelfreetogivethemanydirectionswhichmakeyoufeelcomfortable.

Aromatherapy What is aromatherapy? Aromatherapyistheuseofessentialoils,whicharenatural,highquality,pureoilsderivedfromthedistillationofplants.

What does Aromatherapy do for me? Aromatherapyhasthreemainfunctions:toreducestress,tobalanceandincreaseone’ssenseofwellbeing,andtotreatphysicalandmentalailments.

How are the oils used? Theoilscanbeinhaledwithsteamingwater,breathedthroughadiffuserorbreathedthroughpersonalizedspraybottles.

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Hospice and InsuranceHospiceservicesarenowcoveredundernearlyallinsuranceplans.However,thecoverageandpaymentratesvarygreatlyfromplantoplan.Ifyouhaveanyquestionsaboutyourcoverage,pleasecalltheHospiceofficeandasktospeakwithareimbursementrepresentative.FranciscanHospicewillalwaysprovidecareforthosewhoareunabletopayforservices.

Medicare, Tricare and Medicaid hospice benefitsThefollowingchartdetailsthespecificservicesavailabletopersonscoveredbyMedicare(PartA),Tricare,andMedicaidwhoelecttousetheirspecializedhospicebenefits.Inadditiontohavingoneoftheseformsofinsurancecoverage,apatient’sphysicianandtheHospicemedicaldirectormustcertifythatapatientisterminallyillwithaprognosisofsixmonthsorless.Patientswithaterminalprognosisofgreaterthansixmonthsmaystillbeeligibleforsomehospiceservices(thisissubjecttocareneeds,insurancecoverageandplaceofresidence).

Coverageandpaymentratesforhospiceservicesvarygreatlyfromplantoplan.Ifyouhaveanyquestionsaboutyourcoverage,pleasecalltheFranciscanHospiceofficeandasktospeakwithareimbursementrepresentative.

MEdICArE, TrICArE, MEdICAId INSurANCE PLAN HOSPICE BENEFIT COvErAgE

Intermittent visits by hospice interdisciplinary team 100%

drugs for pain relief and symptom management 100%

Medical supplies 100%

Medical equipment 100%

Inpatient respite care (short-term nursing home stay) 100%

Continuous nursing care in the home during a crisis period 100%

Bereavement services 100%

Authorized inpatient care for acute pain and/or symptom management 100%All other insurance plans

MedicationsMedicationsforpainreliefandsymptommanagementareusuallyprovidedthroughFranciscanHospice'sownpharmacy.Havingourownpharmacyallowsustodelivermedicationsdirectlytoyouandtoprovidethehighestqualityofpharmacyservice.Yourhospicenursewillreviewwithyoutheprocedureforrefillingmedications.

Thehospicenursewillbeaskingyourphysiciantoorderasmallsupplyofmedicinescalled“comfortkit”foruseinthehomeandwillreviewthesemedicineswithyou.Themedicinesinthiscomfortkitareusedforspecificsymptomsthatmayarise.Donotusethesemedicationsunlessinstructedbythehospicenurse.

Medical EquipmentOftenmedicalequipmentwillbeneededathomeorinthenursinghome.Theseitemsareusuallyprovidedasacoveredbenefitthroughyourinsurancecoverage.Thehospicenursewillhelparrangefordeliveryoftheseitems.FranciscanHospiceoperatesitsownmedicalequipmentservice.Thisallowsustoprovidethehighestqualityofmedicalequipmentandservicedirectlytoyou.

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Franciscan Hospice HouseFranciscanHospiceisthelargest,mostcomprehensiveproviderofhospicecareintheSouthPugetSound.Wehaveofferedcareherefor15years,andhavecompletedthecontinuumofhospicecarebyaddinganinpatienthospicefacility,knownasFranciscanHospiceHouse.

A Unique ApproachAsourregion’sonlyinpatienthospicefacility,HospiceHouse:

•Assistshospicepatientswhorequireahigher levelofcareinavoidingrehospitalization.

•Allowsfamilyandpatienttotransition betweencarevenues,forexample,between hospitalandhome.

FranciscanHospiceHousehasprovisionsforfamilytostaywithlovedones(byprovidinghide-a-bedsandseparatebedrooms)andtoparticipateinpatientcare(throughflexibilityinpreparingmeals,providingspiritualcare).

Special Features of Franciscan Hospice House •Comfortablefurnishings,lighting,plants andartworkthatcreateahomelike environment.

•Kitchen/familyroomdevotedtofamily needs

•Gardenareaswithwalkwaysandameditative settinginvitingtofamilyandpatients

•Meditationchapelforprayerandmeditation

•Highlyqualifiedandtrainedstafftoprovide compassionateandcomprehensiveend-of- lifecare

•Trainedcommunityvolunteers

•Comforttherapies(massagetherapy,music therapy,arttherapy,aromatherapy)to enhancepatients’qualityoflife.

Type of CareShort-termhospicecareisprovidedin20singlepatientroomstopatientsfacingimminentdeathwhosesymptomsarenolongermanageableinthehome.Short-termcaremayalsobeprovidedtopatientsintransitionbetweenthehospitalandhome.

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Hospice in Nursing HomesWhy would a person living at home with a life threatening illness want to move to a nursing home?Manytimesastheillnessprogresses,theresponsibilitiesofcaregivinggrowbeyondthecapacityoffamilyandfriends.Whenthathappens,theworkaspectofcaregivingcanbecomeoverwhelming.Whenthelovedone’scareistransferredtotheprofessionalstaffofanursinghome,familyandfriendsmayonceagainabletobethelovingsupporterstheydesiretobe.

Theneedtoenteranursinghomealwayspresentsdifficultchoicesforafamily.Eventhoughthedecisionismadeinorderthatyourfamilymemberwillreceivethequalityofcareyoudesire,familymembersoftenfeelguiltyorburdenedbythedecision.TheHospiceteamunderstandsthesefeelingsandwillbeabletosupportyouinthiscaregivingdecision.

Hospiceservesthepatientandfamilyineithertheprivatehomeorthenursinghome.Theroleofthehospiceteamistoprovideprofessionalcoordinationforallcaregivers.And,ofcourse,whateverserviceshospicepaidforwhenthepatientwasathome(medications,equipment,visitsbyhospicestaff)arealsopaidforinthenursinghome.

How to choose a nursing home.YouwillfindalistinthisbookletofnursinghomescurrentlyworkingwithFranciscanHospicetoprovidehospiceservicesfortheirresidentswithterminalillness.ThislistdoesnotincludeallthefacilitiesavailableinPierceCountyandisnotintendedtorestrictyourchoice.

Manyfamiliessaythatthemostimportantreasontheyhadforchoosinganursinghomewasitslocation.Sowehavelistedthefacilitiesaccordingtotheirlocation.ThebookletWhen Someone You Love Needs Nursing Home Careisavailablefromyourhospicenurseorsocialworker,whowillalsogiveyoupersonalassistanceinchoosingafacility.

How can I find out more about insurance benefits for hospice in the nursing home?Ifyourlovedoneisalreadyadmittedtohospiceasahomepatient,askyourhospicenurseorsocialworkerforinformation.

Hospice serves the

patient and family

in either the private

home or the nursing

home. The role of

the hospice team

is to provide the

professional

coordination for

all caregivers,

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A Message to Caregivers(AdaptedfromthebookTaking Care of Your Aging Family

MemberbyNancyHooymanandWendyLustbader)

Itisimportanttorealizethatalthoughdiseaseanditssymptomshappentothepatient,illnessaffectstheentirefamily.Caringfortheterminallyilllovedonecanberewarding,butitisphysicallyandemotionallydrainingforboththecaregiversandtherestofthefamily.

Youareanimportantpersonwithanextremelyimportantroletoplayincaringforyourlovedone.It’simportantforyoutodevelopwaysofself-caretoprotectyourownphysicalandemotionalwellbeing.Smallthingsyoudoforyourselfcanmakeabigdifference.Somesuggestionsforstayingstrongare:

Accept helpFriends,familyandhiredassistantscanbeasourceofgreatsupport.Acceptinghelpisn’tasignofweaknessorfailureonyourpart.Notacceptinghelpcanleadtoburn-out.Inaccept-ingassistance,youneedtotellpeoplespecificallywhatyouneedhelpwith.Examplesareyardwork,errands,bringinginfood,sittingwiththepatientwhileyourestorgetout.Remember,mostpeoplesincerelywanttohelp.Theymayneedyoutotellthemwhattohelpwithandhowtheymaybestsupportyou.

Take time for yourselfPleasurableeventsareatimeofrenewal.Theycanincludealongwalk,timewithasupportivefriend,readinganovelorhavingaleisurelybath.Takingtimeforyourselfallowsyoutofocusonotheraspectsoflife.Setagoalofatleastoneoutingperweekanddesignateatimeanddate.Besuretopayattentiontotheenjoyablefeelingsderivedfromyourleisurelyactivitiessoyoucanrecallthemwhenneeded.

It is imperative that you pay attention to your own physical needsYoumaygetsobusywithbeingacaregiverthatyouforgetyourowndietandfitness.Frozendinnerswithgoodnutritionalcontentareonewaytoassurethatyouaregettingwhatyouneed.Foodpreparationbyothersgivesthemawaytohelpandgivesyougoodnourishment.

Excercise regularlyGetsomeexercise—evenalittlehelps.Exercisingproducesbenefitsofbettersleep,increasedenergy,maintenanceofthecardiovascularsystem,improvedjointflexibility,andstimulationoftheproductionofchemicalswhichalleviatestress.Ifyoucan’tgetoutofthehouse,youcanbenefitfromastationarybike,aerobictapesorrecords,andtension-releasingexerciseswhichcanbedonewhilewatchingtelevisionortalkingonthephone.Ifyouhaveneverexercisedregularly,itmaybehardtostartnow.However,evenstretchingexercisesandveryshortwalkscanhelp.

Get uninterrupted sleepFindingsomeonetoprovideoccasionalnightdutycanassureyouafewrestfulnights.Ifyouarehavingtroublesleeping,exercisinglateintheafternoon,avoidingnaps,anddrinkingwarmmilkbeforebedtimecanhelpyousleep.Ifyoucan’tgetanightofuninterruptedsleepathome,tellaHospiceteammember.Localhotelsaresometimesabletodonateanight’slodgingtofamiliesunderhospicecare.

Practice relaxationPauseforfiveminutestobreathedeeply.Countbreathsorfocusonpleasantimageswhilesittinginarelaxedandquietstate.Agentleshoulderandneckmassagecanhelp.

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Keep your sense of humor Laughterstimulatestheproductionofbodychemicals,whicharenaturalanestheticsandrelaxants.Acknowledgethefunnyaspectsofthecaresituationandlaughatmistakesratherthanfeelingremorse—itcanmakethesituationmoremanageable.Remember:Youareimportanttoo.

Helping Children to Cope with Death and GriefChildrenandgrandchildrenareanimportantpartoffamiliesandareaffectedbytheillnessofafamilymember.

Untilrecently,itwasthoughtthatchildren,especiallytheveryyoung,wereunabletocomprehendseparationandloss,andthereforedidnotgrieve.Basedonmorerecentinformation,however,childdevelopmentexpertsnowagreethatchildrendoinfactgrieveandthattheeffectsofunresolvedgriefcanbesevere,evenlastingintoadulthood.Waysofhelpingchildrencopeinclude:

•Givingpromptandaccurateinformation aboutwhatishappening,allowingthemto askquestionsandreceivehonestanswers

•Allowingthemtoparticipateinthefamily grievingprocess,includingthefuneral

•Reassuringthemthattheotherfamily relationshipsaresecureandthattheywillbe takencareofandsupported

Childrenandteensneedclear,conciseinformationaboutwhatishappening.Itisfarbetterforadultstonamethedisease—tumor,cancer,diabetes,forexample—thantousevaguetermssuchas“sick.”

Childrenadjustandlearnfromtheadultsintheirlives.Whenchangesoccurregardingalovedone,childrencaneasilybepreparedbystatingthefactsinsimplelanguagethattheycanunderstand.Forexample,“Grandpahasoxygentanksinthehousetohelphimbreath,”or“Momisgoingtoloseherhairbecauseofthetreatmentssheisgettingtohelpherfightcancer.”

Ifaclosefriendorfamilymemberisinthefinalstageoflife,childrenshouldbegiventhechoicetovisit,touchandtalkwiththem.Thiswillprovideanopportunityforthechildtorecallgoodmemories,sharefeelingsandsayalovingfarewelltothelovedone.Inaddition,sharingfamilytogethernessisimportanttotheillperson.Itcanalsohelpthechildunderstandthatdeathisanaturalpartofthelifeprocess.

AlistofsuggestedbooksforchildrenisavailablefromHospice.Thelocallibrariescanhelpyoulocatethesebooks.

Thehospicesocialworkersandnursesareavailabletospeakwithyouandthechildreninyourfamilyinordertohelpyoucopeasafamily.

16

Activities of Daily Care (Basic Tips)

HygieneBathingoftenfeelsgoodforthelovedonewhoisbedbound.Thisactivityprovidescleanlinessandhelpstorefreshthebodyandspirit.Abathisusuallygiveninthemorningwhentheindividualhasmoreenergybutmaybegivenatanytimeduringtheday.

Equipment •Largebowlwithwarmwater

•Soapandtowels

•Lightbedcovertopreventchills

•Lotioncontaininglanolin

How to provide hygiene •Batheonlyasmallareaatatimetoavoid chills.

•Gentlysoaptheskin,rinseandpatdry.Some soapsarerinseless—askthehospicenurse.

•Beginwashingthefaceandworkdown towardthefeet.

17

•Don’tforgettowashthebackandapply lotion.

•Afterwashingthefeet,changethewater.

•Gentlywashanddrythebuttocksand genitalia.Dailyattentiontothisareais especiallyimportantsincebacteriatendsto collectthere.Askin-protectinglotionor ointmentshouldbeappliedifcontrolofstool orurineisaproblem.

•Sheetsshouldbechangedatleastweekly. Thistaskusuallyrequirestwopeople.

Mouth CareCleaningthemouthprovidesseveralbenefitsforyourlovedone.Regularmouthcarehelpspreventsoresandmayimprovetheappetite.

Equipment •SofttoothbrushorToothette

•Toothpaste

•Mouthwash(alcohol-free)orahomemade solutionofatsp.bakingsodato2cupswarm water.

•Coolwater

•Smallbasin

•Drytowel

•Water-solublejelly

How to provide mouth care •Topromoteindependence,allowyourloved onetocleantheirownmouth.

•Raisetheheadtoahalf-sittingpositionto preventchoking.

•Putadrytowelunderthechin.

•MoistenthetoothbrushorToothetteand applytoothpasteormouthwash.

•GentlymovethebrushorToothetteoverthe teethandgums.

•Rinsethemouthwitheithercoolwateror dilutedmouthwash.

•Applyasmallamountofwater-solublejellyto thelipstopreventdrying.

•Individualswithdenturesshouldcontinue theirusualdenturecleaningroutineand schedule.

•Astheindividuallosesweight,denturesmay notfitproperlyandcauseadditionalmouth sores.Youmaywanttoconsultyourdentist aboutliningdenturesforabetterfit. •Trytoprovidemouthcaretwicedaily.

Remember •Givepainmedicationone hourbeforebathingif movementispainful.

•Usealightblanketorsheet duringthebathtoavoid chills.Provideplentyof privacy.

•Iftheindividualisunabletot tolerateafullbath,offerto washtheface,hands,back andgenitalareasonly.

•Avoidpowders.Cornstarchisagood substituteandcanbelightlysprinkledonthe linen.

•Personalgroomingoftenhelpsimproveyour lovedone’sattitudeandincreasesasenseof dignityandrespect. •Ifmovingdoesnotcausepain,exercisingthe armsandlegscanbedoneduringorafterthe bath.Passiveexercisescanhelpmaintain muscletone.Pleasecheckwithyourhospice nursebeforeexercisingyourlovedone’sarms orlegs.

18

Remember •Donotattempttowashthemouthwitha toothbrushororalswabsifthemouthisvery sore.Offertorinsethemouthwith mouthwashorcoolwater.

•Alwaysraisetheheadtoavoidchoking.

•Ifthemouthisverysore,yourHospicenurse cangiveyouspecialinstructions.

•Reportanydiscolorationorwhitepatchy areasinthemouthoronthetonguetothe nurse.

•Ifdrymouthisaproblem,sugar-freehard candyoricechipscanbehelpful.

Skin CareTheskinisthebody’snaturalbarrieragainstinfection.Unfortunately,asthebodybecomesweaker,pressureulcersaredifficulttoprevent.Pressureulcersoftenincreaseasthepersonbecomesimmobile.Skinoverabonyareabecomingreddenedorpurpleisthefirstindicationofthedevelopmentofapressuresore.Thefollowingrecommendationscanhelppreventskinbreakdown.

How to provide good skin care: •Keeptheskincleananddry.

•Keepthebedlinendryandwrinklefree.

•Providepainmedicationasneededwhen turningtheindividual.

•Positiontheindividualoffthepressure- sensitivearea.

•Usepillowsorothersupportivedevicesto maintaingoodbodyalignment.

•Explaintoyourlovedonetheimportanceof changingpositioneverytwohoursorso.

Alwayschecktheskinduringthedailybath.Ifyouseereddenedareas,telltheHospicenurse.Otherdevicessuchasairmattressesorspecialpillowscanhelpinmaintainingtheskin.

NutritionAnytimesomeoneisill,theirappetitedecreases,whethertheillnessistheflu,aninjuredankle,oracancer-relatedprocess.Thebody’sneedforcaloriesandprotein-richfoodsisalteredbecauseofdecreasesinactivity,exercise,andgeneralmet-abolicrate.Ifwe“listen”toourbody,itwilltellusexactlywhatitneedsinordertosustainlife.Asthebody’ssystemsbegintoshutdown,thebodyisnolongerabletodigestorusefoodandfluids.Adecreaseinfoodorfluidintakeisnormal.

How to provide nutrition: •Donotforcethepatienttoeatorconstantly remindthemoftheneedtoeatinorderto getbetter.Offerfoodanddrinkbutdonot force.Eatingisthechoiceoftheindividual.

•Servethemealinsmallportionsandina relaxedandcomfortableatmosphere. Suggestthefamilyeattogether.Foods attractivelyservedinasocialatmosphere oftenincreasetheappetite.

•Removeunpleasantodorsandavoid unpleasantproceduresbeforemealtime.

•Mouthcarebeforemealtimeoften stimulatestheappetite.

•Appetitetendstodecreaselaterintheday. Breakfastmaybethebestmealoftheday.

•Allowtheindividualtorestaftermeals. •Small,frequentmealsaremorelikelytobe toleratedastheappetitelessens.

Personal grooming

often helps improve

your loved one’s

attitude and

increases a sense of

dignity and respect.

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Fluids and DrinkFluidsareimportantforthebody.Theyarenecessarytokeeptheskinhealthyandthemouthmoist.Fluidsalsohelpthebodyremovewasteproductsthroughthestoolandurine.Fluidneedstypicallydecreaseasthediseaseprogresses.

How to provide fluids: •Donotforcetheindividualtodrink.Offer drinkattimeswhentheindividualismost likelytowantadrink.

•High-calorie,high-proteindrinksarevery nutritionalandcanhelpthebodymaintain strength.TheHospicenurseordietitian cansuggestwhatdrinksmaybemost appropriate.

•Keeptheheadoftheindividualinahalf sittingpositionwhenofferingliquids.

•Avoidtheuseofstraws.Frequently, individualswillswallowairandbecomemore nauseated.Icechips,Jelloandpopsiclesare otherwaystogiveliquidstoindividualswho areveryweakandhavedifficultyswallowing.

EliminationTheeliminationofurineandstoolisthebody’swayofremovingwasteproducts.Problemswitheliminationmaycausediscomfort,anxietyandembarrassment.

UrineUrineiscomposedprimarilyofthebody’swasteproductsdissolvedinwater.Forthepersonconfinedtobed,abedpanorurinalisneededtocollecttheurine.Whenthepersonisnotabletocontrolurinaryflow,protectiveunderwearmaybeused.OtheroptionsshouldbediscussedwithyourHospicenurse.

Formanypatients,asoftcatheter(tube)canbeusedinordertocontrolthenaturalflowofurineandtodrainthepatient’sbladder.Withtheconsentofthedoctor,thenursemayplacethiscatheter.Thenursewillteachyouhowthecath-eterworksandhowtocareforit.

Remember: •Alwayswashyourhandsbeforeandafter workingwiththecatheterordrainagebag, evenwhenwearingprotectivegloves.

•Checkthedrainagetubingforanykinksand makesurethedrainagebagisbelowthelevel ofthepatienttoallowdrainagebygravity.

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Care of the patient with a catheterItisimportanttocleantheareaaroundwherethecatheterentersthepatient’sbody.Thisshouldbedoneduringthepatient’sbath.Gentlywashtheareawithwarmwaterandamildsoap;rinseandthenpatdry.Yourhospicenursewillteachyouhowtocleanthecatheter.

Sometimes,thecathetermaybecomeblockedbecauseofsedimentintheurine.Catheterblockageshouldbesuspectedifurineflowhasstopped.Checktoseethattherearenokinksorloopsinthecathetertubingandthatthedrainagebagisbelowthelevelofthepatient.Yourhospicenursewillteachyouhowtoirrigatethecatheterandwillprovideyouwiththenecessarysupplies.

Remember: •Keepthebedpanclosetothepatienttoavoid accidents.

•Placewaterproofbeddingunderthepatient. Ifleakageshouldoccur,thepadmayhelpto preventadditionalchangesoftheentirebed linen.

•Aftereachstool,therectalareashouldbe washedwithamildsoapandwater,anddried thoroughlyandgently.Askinprotection lotionshouldbeapplied.

•Encouragethepatienttodrinkfluidsas tolerated.

•Givethepatientprivacy.

•Wearglovesandwashyourhandsafter helpingthepatientwithtoileting.Washthe patient’shandsaswell.

•Checkforanyleakingaroundwherethe catheterentersthebody.Ifyouseeleakage, tellyourHospicenurse.

•Emptythedrainagebagtwiceaday,oras instructedbyyourHospicenurse.

StoolBowelhabitsdifferfrompersontoperson.Somepeoplemovetheirbowelsonceaday,whileothersmayonlymovetheirstwotothreetimesaweek.Withthehospicepatient,bowelmovementsarelessfrequentandconstipationoftenoccurs.Inactivity,painmedicationanddecreasedfoodintakecanfrequentlycauseconstipation.Thebesttreatmentforconstipationisprevention.Thefollowingsuggestionsareofferedtohelppreventconstipation.

Remember: •Trytoeatfruitsandvegetables.

•Drinkplentyofwaterandjuices.

•Exerciseastolerated.

•Setasideaquiettimeeachdaywithplentyof privacytositonthetoiletorcommode.

•Notify your hospice nurse if the person has not had a bowel movement for three days.

Yourhospicenursewillsuggestnon-prescriptionlaxativestoassistthepatientinmaintainingregularbowelfunction.

21

Yakima Fruit Paste RecipeDOSE: 1–2 tablespoons per day

1poundprunes1poundraisins,pitted1poundfigs

1. Preparetea.Useabout21/2cupsboiledwateraddedtoteaandsteep5minutes.

2. Strainteatoremovetealeavesandaddonly1pintteatoalargepot;thenaddfruit.

3. Boilfruitandteafor5minutes.4. Removefromheatandaddsugarandlemon

juice.Allowtocool.5. Usehandmixerorfoodprocessortostirfruit

mixtureintosmoothpaste.6. Placeinplasticcontainerandplacein

freezer.(Pastewillnotharden.)7. Spoonoutwhatyourequireeachday.

Enjoyeatingfruitpastestraightoffthespoon.Spreaditontoastoraddhotwaterandmakeadrink.

•Ifthefruitpasteisnotworking(nobowel movements),thenincreasetheamountof fruitpasteeachday.

•Ifthefruitpasteinducesveryloosestools,cut downontheamountoffruitpasteintake. Considertakingiteveryotherdayinsome cases.

Forquestionsorproblemswiththefruitpaste,contactyourhomecareorhospicenurse.

DiarrheaFrequentwaterystoolsaccompaniedbystom-achcrampingmaybecomeadiscomfortforthepatient.NotifyyourHospicenurseshoulddiarrheaoccur.Non-prescriptivemedicationcanbeeffectivetocontroldiarrhea,althoughstrongermedicationmightbenecessarytoeliminatethisproblem.

Remember: •Keepthebedpanclosetothepatienttoavoid accidents.

•Placewaterproofbeddingunderthepatient. Ifleakageshouldoccur,thepadmayhelpto preventadditionalchangesoftheentirebed linen.

•Aftereachstool,therectalareashouldbe washedwithamildsoapandwater,anddried thoroughlyandgently.Askinprotection lotionshouldbeapplied.

•Encouragethepatienttodrinkfluidsas tolerated.

•Givethepatientprivacy.

•Wearglovesandwashyourhandsafter helpingthepatientwithtoileting.Washthe patient’shandsaswell.

•Talktoyourhospicenurseaboutnon- irritatingfoodsandbeverages.

Body MechanicsWhenapatientisconfinedtobed,frequentchangesinthepatient’spositionareveryimportant.Thiscanhelpthepatientfeelmorecomfortable.Changingthepatient’spositionpreventsbedsoresandstiffnessofjoints.Thepatient’spositionshouldbechangedeverytwotofourhours.

Remember •Explaintothepatientwhatyouareaboutto do.Thiswillminimizefearandencourage cooperation.

•Encouragepatientindependence.

•Usea“pullpad”wheneverpossible.

•Loosenthebedlinenandremoveextra pillows.

•Supportthearmsandlegswithpillowsor rolledtowels.

•Checkalltubingtoensureitwillmovefreely.

4ozsennatea1cupbrownsugar1cuplemonjuice

23

When turning the patient from back to side: •Movethepatienttothenearsideofthebed beginningwiththeheadandshoulders,the trunk,andthenlegsandfeet.

•Makesurealltubingisfreewithenoughslack toallowthepatienttoturnwithoutpulling.

•Flexthepatient’snearestkneeastoleratedto thepointwherethefootisnearlyflatonthe mattress.Theflexedkneeactsasafulcrum whenturningthepatient.

•Ifthepatientisalreadyonapullpad,usethe sheettomaintainbodyalignment.

•Adjustthepatient’shipsandshoulderssothat theyareatarightangletothemattress.This willhelpmaintainthepatient’spositionon theirside.

•Supportthepatient’sjointswithpillowsto maintaingoodalignment.

•Checkthepatient’sshoulderandarmto makesuretheyarenotlyingdirectlyonit.

•Placeoneortwopillowsunderthepatient’s kneeandback,supportingthepatient’s handsandfeetwithpillowsorrolledtowels.

Goodbodymechanicsareessentialtoavoidinjuryfromliftingpatients.Italsohelpsthepatienttofeelconfidentandsafe.

Remember: •Twopeoplearebetterthanonewhenlifting ormovingapatient.

•Tellthepatientwhatyouaregoingtodo beforemovingthem.

•Standfirmlyonthefloorandasclosetothe patientaspossible.

•Alwaysflexyourkneeswhenlifting.

•Avoidtwistingorturningyourback.

•Standdirectlyinfrontofthepatientwhen transferringthepatientinandoutofbed.

When the patient needs to be moved up in bed: •Assistthepatienttoflexhisorherknees.

•Movetotheheadofthebed(hospitalbed only).

•Placebothhandsunderthepatient’s shoulders.

•Onsignal,helpthepatienttomoveupwardas theyplanttheirheelsintothemattress.

Repositioning the patient requiring two persons: •Turnthepatientfromsidetoside, positioningapullpadunderthepatient’s hipsandlowerback.

•Rollbothendsoftheliftsheettowardsthe patientuntiltheyaresnugagainstthe patient’ships.

•Onsignal,liftthepatienttogether.

Transferring the patient in and out of bed: •Placethebedinalowposition.

•Determineifthetransferwillbefromthe rightorleft.Alwayshavethepatientassist usingtheirstrongestside.Thisdetermines thedirectionofthewheelchair,reclineror bedsidecommode.

•Removearmrestsordetatchablelegrests. fromthewheelchairthatarenotnecessary.

•Alwayslockthewheelchair.

•Assistthepatienttositsafelyontheedgeof thebed.

•Standinfrontofthepatient.

•Wrapyourarmsaroundthewaistin“bear hug”fashionandbringthepatienttoa standingposition.

•Pivotandassistthepatienttositwhile bendingyourknees.

•Positionpatient’sarmsandlegs.Support themwithpillowsifnecessary.

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Symptom Control Managing Physical SymptomsTherearemanypotentialphysicalsymptomsrelatedtolife-threateningillnessandthesideeffectsoftreatment.Thefollowingareeffectivewaysofmanagingsomeofthemorecommonproblems.Youwillprobablynotexperienceallofthese,butyoushouldbeawareofhelpfulwaystomanagethemiftheyoccur.Pleasebesuretonotifyyournurseaboutphysicalsymptomsyouareexperiencing.

PainPainisbothaphysicalsensationandanemotionalexperience.Wewanttohelpyouwithpainmanagementsotogetherwecanworktowardmaximizingyourcomfortasmuchaspossible.Havingalife-limitingillnessdoesnotnecessarilymeanyouwillexperiencepain.Ifyoudoexperiencepain,youcanbeconfidentthatmedicationsandotherinterventionsareavailabletoeasethepain.Theoverwhelmingmajorityofhospicepatientscanbekeptcomfortable.

25

How to help us help youYournursemayaskyoutodescribeyourpain.Ifyouusethesamesystemeachtime,youcantellushowyourpainchangesovertime.Thishelpsustodeterminehowmuchreliefyouaregettingfromyourpainmedicine.Onewaytodothisisbyusingthe0–10scale.Inthismethod,0equalsnopainand10equalstheworstpainimaginable.Thescalebelowdemonstratesthisidea

0 10

no pain worst pain imaginable

Ifthescoregoesdown,theplanforyourpainisworking.Ifitgoesup,perhapsyouneedmoremedicationoradifferentschedule.

Anxiety, tension and painAnxiety,tensionanddepressioncanaddtoyourpain.Theydonotnecessarilycausepain,buttheycancompoundyourpainexperience.Oneofthemajorbenefitsofachievingpainreliefisthatanxietyisalsoreduced.

Basic principles of pain managementWhenyouexperiencepain,itisimportanttounderstandthepreventiveapproach.Animportantpartofthatapproachinvolvestakingpainmedicationonaregularbasisinsteadofsimplyasneeded.Ifyouwaittoolongtotakeyourpainmedication,thepaincanbecomesoseverethatthemedicationisnolongereffective.Takingmedicationasscheduledwillhelppreventpainfromreturning.Onceyoubecomepainfree,itisimportanttocontinuethemedicationschedulesetupbyyournurseasapreventativemeasure.Maintainingaregularmedicationscheduleisthebestmeansofmanagingpain.

Concerns About MedicationsManypeoplewhotakepainmedicationsexpressconcernaboutthepossibilityofaddiction.Itisimportanttounderstandthedefinitionofaddictionandothertermsrelatedtotheuseofdrugs.

Drugabuseistheuseofadruginamannerthatisnotmedicallynecessary.Addictionisapatternofoverwhelmingdesireinobtainingandusingadrugforitseffectsonthemind.Ifyouareconcernedaboutthesethings,justaskyourselfthefollowingquestion:“IfIdidn’thavepain,wouldIbetakingthismedication?”Youranswerisprobably,“Ofcoursenot!”

Types of Pain MedicationsTherearemanydifferentpainmedications,bothopioidsandnon-opioids.Theamountandtypeofpainthatyouhavewilldeterminehowmuchandwhattypeofmedicationyourdoctorprescribes.

Non-OpioidsNon-opioidsarepainmedicationswhichareusedtotreatmildormoderatepain.Twowellknownnon-opioidsareaspirinandacetaminophen.Bothofthesedrugscanbeveryeffectiveformanytypesofpain.Theymaybeallyouneedtofindrelief,oryoumayneedtotakethemalongwithanothermedication.Eventhoughyoucanbuythesedrugswithoutaprescription,theyneedtobeusedwithcare.Alwaysletyourhospicenurseknowifyouaretakingthembecausetheremaybetimeswhenyoushouldavoidthem.Itisalsoimportanttoknowthataspirinisfoundinawidevarietyofmedicationspurchasedwithoutaprescription—besuretoreadthelabels.

Thereareothernon-opioiddrugswhicharehelpfulinthereliefofpain.Theseincludemedicationstotreatdepression,muscletension,anxiety,inflammationandothers.Wheneveryoureceiveaprescriptionforsuchamedication,yourHospicenursewilldiscussitspurpose,sideeffectsandactionswithyou.

26

Your hospice nurse

will continually

assess the patient’s

needs and discuss

any recommended

changes in

treatment with you.

•Non-opioidssuchasibuprofenshouldbe takenwithfoodifpossible.

•Donotcrushlong-actingnarcoticpills.Ifthe patientisunabletoswallow,tellthehospice nurse.Adifferentrouteormedicationmay beindicated.

Call the hospice nurse immediately if •Yourlovedoneisunabletotakethe medicationasprescribed

•Painisexperiencedinnewareas

•Thereisanincreaseintheintensityofpain

•Thereareconcernsamongfamilymembers aboutover-sedation •Thepatientexperiencessymptomsof confusion,restlessness,“baddreams”or hallucinations

•Equipmentusedtoassistwithpainreliefis notfunctioningproperly

•Thelovedoneexperiencesnauseaand/or vomiting

NauseaNauseameansbeingsicktothestomachandvomitingmeansthrowingup.Nauseaandvomitingcanhappenevenwhenapersonisnotnearfoodorthinkingaboutfood.Somecommonreasonsfornauseaandvomitingareradiationorchemotherapytreatments,diseaseprocessorcookingsmells.Sometimesdiseasesthemselvesmaycausenauseaandvomiting.

OpioidsOpioidsareusedforthereliefofmoreseverepain.Theyareavailableonlybyprescription.Manypeopleareconcernedaboutthepossibilityofaddictionwithopioids.Again,itisimportanttorememberthattheonlyreasonyouaretakingthesemedicationsisthereliefofpain.Thisisanappropriateuseofopioids.

Opioidscomeinmanydifferentforms—pills,oralliquids,topicalgels,rectalsuppositoriesandinjections.Acommonmythaboutthesemedicationsisthataninjectionisnecessarytoachievethebestpainrelief.Thatisnotthecase.Theproperamountofmedicationtakenbymouthwillbeequallyaseffectiveasinjections.

Inmostcases,theappropriateuseofopioidswillrelieveyourpain.Ifyourpainisnotadequatelycontrolled,yourdoctormaywanttoincreasethedosageorincreasethenumberoftimesyoutakemedicationeachday.

Remember: •Painmedicationforchronicpainneedstobe takenatregularintervals.Thehospicenurse willhelpyouestablishthebesttimestouse themedication.

•Painmedicationcanbetakenbeforethe patientexperiencespain.

•Recordthetimeyoutakeyourpain medication.

•Allopioidsneedawrittenprescriptionsigned bythedoctortoberefilled.

•Opioidsarelikelytohaveaconstipatingeffect onthebowels.

•Opioidsoftencausethepatienttobecome sleepy,butasthebodyadjuststothenarcotic thesleepinessshoulddiminish.

27

How to Help •Ifthenauseaoccursonlybetweenmeals,give frequentsmallmeals,snacksatbedtime,and leavefoodwithineasyreach.

•Seekouttastepreferences;manypatients developadistasteforredmeatandbroths. Substituteotherproteinsources.Avoidfried andspicyfoods.

•Avoidfattyandhardtodigestfoods.

•Servefoodcoldoratroomtemperatureto decreaseitssmellandtaste.

•Offerclearliquids(gingerale,Jello,tea, popsicles).

•Havethepatientrestcomfortablyinaquiet environment.

•Providedistractionsuchassoftmusicor favoritetelevisionshow;stayandkeepthe personcompany.

•Providegoodmouthcare.

•Giveappropriatemedicationtopreventnau sea,ifordered.

Call your hospice nurse immediately if: •Youareconcernedthatsomeofthevomited materialhasbeeninhaled.

•Vomitingepisodesoccurmorethan3times anhourfor3ormorehours.

•Thepersonisunabletotaketheir medications.

•Anybloodormaterialthatlookslikecoffee groundsappearsinthevomit.

•Thepersonlosesconsciousness.

Besuretotellyourhospicenurseaboutnauseaorvomitingbecausethereareseveralmedicationsthatcanbegiventohelpcontrolthisproblem.

BreathingBreathingdifficultyoccurswhennotenoughoxygenisdeliveredtothebody.Eitherthelungscannotbreatheinenoughair,ortheycannotdeliverenoughoxygentothebloodstream.Anumberofdifferentproblemscancausethisdifficultyincludingchroniclungdisorders,airwayobstruction,pain,stressoranxiety,orfluidinthelungs.Youmayseebreathingchangesasyourlovedone’sdiseaseprogresses.

Remember: •Becalmandreassuring.

•Havethepersonsitup.Occasionallyleaning forwardhelpswithdifficultyinbreathing. Thispositionwillhelpthelungsoperatemost efficiently.

•Raisetheheadofthebedorplacemore pillowsbehindtheback.

•Avoidhavingthepersonlieflat.

•Freshairorafanonlowsettingmaybe comforting.

Call the hospice nurse if: •Thepatientcomplainsofdifficulty breathingorchestpain.

•Thepatientcoughsupthickyellow,greenor bloodysputum.

•Thepatient’sskinispaleorblueoritfeels coldandclammy.

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Yourhospicenursewillcontinuallyassessthepatient’sbreathing.Ifbreathingproblemsexist,thenursewilldiscussthepossibleneedforadditionalmedicationoroxygen.Ifoxygenisneeded,thenursewillordertheneededequipment.

Asthepatientbecomesweaker,clearingthethroatmaybecomemoredifficultandsecretionsmaycollectintheairway.Ifsecretionscan’tberemovedbycoughing,thenursewilldiscussvariousmeansofdealingwithexcessivesecretions.

Anxiety, Fear and DepressionSomedegreeofanxiety,fearanddepressioncanoccurforpersonscopingwithaseriousillness.Thesefeelingsarenormal.

Forthepatient,feelingsofanxiety,fearanddepressioncanbeduetolossoffamilyrole,lossofcontrolovereventsofeverydaylife,changesinbodyimage,fearofuncontrollablesufferingandpain,fearoftheunknown,andfearofdeath.

Familymembersmayexperiencethesefeelingsbecauseofthelossoftheirlovedone,angeratwhythispersonhastodie,fearofthepatient’sdeath,frustrationatnotbeingableto“doenough,”orstressduetoincreasedresponsibilityathome.

Ifyouorsomeoneinyourfamilyneedssupportindealingwithanxiety,fearanddepression,youmaywanttotellahospiceworker.Thehospicecareteamknowsmanywaysofhelpingpeopledeveloptheirowncopingabilities.

29

Whenapersonentersthefinalstageofthedyingprocess,twodifferentdynamicsthatarecloselyinter-relatedandinter-dependentareatwork.Onthephysicalplane,thebodybeginsthefinalpro-cessofshuttingdown,whichwillendwhenallthephysicalsystemsceasetofunction.Usuallythisisanorderlyandundramaticprogressiveseriesofphysicalchangesthatarenotmedicalemergenciesrequiringinvasiveinterventions.Thesephysicalchangesarenormal,naturalwaysinwhichthebodypreparesitselftostop,andthemostappropriatekindsofresponsesarecomfort-enhancingmeasures.

Theotherdynamicofthedyingprocessisatworkontheemotional-spiritual-mentalplaneandisadifferentkindofprocess.The“spirit”ofthedyingpersonbeginsthefinalprocessofreleasefromthebody,itsimmediateenvironment,andallattachments.Thisreleasealsotendstofollowitsownpriorities,whichmayincludetheresolutionofwhateverisunfinishedofapracticalnatureandreceptionofpermissionto“letgo”fromfamilymembers.These“events”arethenormal,naturalwayinwhichthespiritpreparestomovefromthisexistenceintothenextdimensionoflife.Themostappropriatekindsofresponsestotheemotional-spiritual-mentalchangesarethosewhichsupportandencouragethisreleaseandtransition.

Whenaperson’sbodyisreadyandwantingtostop,butthepersonisstillunresolvedorunreconciledoversomeimportantissueorwithsomesignificantrelationship,theymaytendtolingereventhoughuncomfortableordebilitatedinordertofinishwhateverneedsfinishing.Ontheotherhand,whenapersonisemotionally-spiritually-mentallyresolvedandreadyforthisreleasebuttheirbodyhasnotcompleteditsfinalphysicalstages,thepersonwillcontinuetoliveuntilthephysicalshut-downiscompleted.

Approaching Death

Adapted from Hospice of North Central Florida, Gainesville, Florida

Theexperiencewecalldeathoccurswhenthebodycompletesitsnaturalprocessofreconcilingandfinishing.Thesetwoprocessesneedtohappeninawayappropriateanduniquetothevalues,beliefs,andlife-styleofthedyingperson.

Asyouseektoprepareyourselfasthiseventapproaches,themembersofyourHospicecareteamwantyoutoknowwhattoexpectandhowtorespondinwaysthatwillhelpyourlovedoneaccomplishthistransitionwithsupport,understanding,andease.Thisisthegreatgiftofloveyouhavetoofferyourlovedoneasthismomentapproaches.

Thephysicalandemotional-spiritual-mentalsignsandsymptomsofimpendingdeaththatfollowareofferedtoyoutohelpyouunderstandthenaturalkindsofthingsthatmayhappenandhowyoucanrespondappropriately.Notallthesesignsandsymptomswilloccurwitheveryperson,norwilltheyoccurinthisparticu-larsequence.Eachpersonisuniqueandneedstodothingsintheirownway.Thisisnotthetimetotrytochangeyourlovedone,butthetimetogivefullacceptance,support,andcomfort.

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Signs and Symptoms1. Coolness.Theperson’shandsandarms,and

feetandthenlegsmaybeincreasinglycooltothetouch,andatthesametimethecoloroftheskinmaychange.Theundersideofthebodymaybecomedarkerandtheskinbecomemottled.Thisisanormalindicationthatthecirculationofbloodisdecreasingtothebody’sextremitiesandbeingreservedforthemostvitalorgans.Keepthepersonwarmwithablanket,butdonotuseanelectricone.

2. Sleeping.Thepersonmayspendanincreasingamountoftimesleeping,appeartobe

uncommunicativeorunresponsive,andattimesbedifficulttoarouse.Thisnormalchangeisdueinparttothechangesinthemetabolismofthebody.Sitwithyourlovedone,holdtheirhand;donotshakeorspeakloudly,butspeaksoftlyandnaturally.Plantospendtimewiththemduringthosetimeswhentheyseemmostalert/awake.Donottalkaboutthepersonintheperson’spresence.Speaktothemdirectlyasyounormallywould,eventhoughtheremaybenoresponse.Neverassumethepersoncannothear;hearingisthelastofthesensestobelost.

3. Disorientation.Thepersonmayseemtobeconfusedaboutthetime,place,andidentityofpeople,includingcloseandfamiliarpeople.Thisisalsodueinparttothemetabolismchanges.Identifyyourselfbynamebeforeyouspeakratherthantoaskthepersontoguesswhoyouare.Speaksoftly,clearly,and

truthfullywhenyouneedtocommunicatesomethingimportantforthepatient’s

comfort,suchas,“Itistimetotakeyour medication,”andexplainthereasonforthe

communication,suchas,“Soyouwon’tbegintohurt.”Donotusethismethodtotrytomanipulatethepatienttomeetyourneeds.

4. Incontinence.Thepersonmaylosecontrolofurineand/orbowelmatterasthemusclesinthatareabegintorelax.Discusswithyourhospicenursewhatcanbedonetoprotectthebedandkeepyourlovedonecleanand

comfortable.

5. Congestion.Thepersonmayhavegurglingsoundscomingfromtheirchestasthoughmarbleswererollingaroundinside.Thesesoundsmaybecomeveryloud.Thisnormalchangeisduetothedecreaseoffluidintakeandaninabilitytocoughupnormal

secretions.Suctioningusuallyonlyincreasesthesecretionsandcausessharpdiscomfort.Gentlyturntheperson’sheadtothesideandallowgravitytodrainthesecretions.Youmayalsogentlywipethemouthwithamoistcloth.Thesoundofthecongestiondoesnot

indicatetheonsetofsevereornewpain.

6. Restlessness. Thepersonmaymakerestlessandrepetitivemotionssuchaspullingatbedlinenorclothing.Thisoftenhappensandisdueinparttothedecreaseinoxygen

circulationtothebrainandtometabolismchanges.Donotinterferewithortrytorestrainsuchmotions.Tohaveacalmingeffect,speakinaquiet,naturalway,lightlymassagetheforehead,readtotheperson,

orplaysomesoothingmusic.

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7. Urine Decrease.Theperson’surineoutputnormallydecreasesandmaybecome“tea”

colored—referredtoasconcentratedurine.Thisisduetothedecreasedfluidintakeaswellasdecreaseincirculationthroughthekidneys.Consultwithyourhospicenursetodeterminewhethertheremaybeaneedtoinsertorirrigateacatheter.

8. Fluid and Food Decrease.Thepersonmayhaveadecreaseinappetiteandthirst,wantinglittleornofoodorfluid.Thebodywill

naturallybegintoconserveenergythatisexpendedonthesetasks.Donottrytoforcefoodordrinkintothepersonortrytouseguilttomanipulatethemintoeatingor

drinkingsomething.Todothisonlymakesthepersonmuchmoreuncomfortable.Smallchipsofice,frozenGatorade,orjuicemayberefreshinginthemouth.Ifthepersonisabletoswallow,fluidsmaybegiveninsmallamountsbysyringe(askthehospicenurseforguidance).Acool,moistwashclothontheforeheadmayalsoincreasephysicalcomfort.

9. Breathing Pattern Change.Theperson’s regularbreathingpatternmaychangewith

theonsetofadifferentbreathingpace.Oneparticularpatternconsistsofbreathing

irregularly,i.e.,shallowbreathswithperiodsofnobreathingof5to30secondsanduptoafullminute.Thisiscalled“Cheyne-Stokes”breathing.Thepersonmayalsoexperienceperiodsofrapid,shallow,breathing.Thesepatternsareverycommonandindicatedecreaseincirculationintheinternalorgans.Elevatingthehead,and/orturningthe

personontheirsidemaybringcomfort.Holdtheirhand.Speakgently.

Dealing with GriefGriefisanaturalresponsetoloss.Itisnotadiseasebutahealthyprocessthatmournerscanpassthroughtoadapttochange.Individualsgrievedifferentlyandthereisnouniformwaypeoplecopewiththeirfeelingsofloss.Youmayfindithelpfultotalkwithfriends.Namingourfeelingsaloudoftenhelpsustoadjusttoourprofoundpainofloss.Familyandfriendsareoftenasourceofsupportduringthistime.Althoughnoonewilleverreplaceyourlovedonenorwillanywordslessenyourpain,trustedfamilyandfriendsarereadytolistenandbethereforyou.Iftherearechildreninthehome,youneednothideyoursadness.Childrenunderstandwhenapersonissadandwilllearnthatgriefispartoflifeandisanaturalexperiencewhensomeoneyouloveisdying.Dealingwithgrieftakestime.Itmaylastmorethanayear.Feelingsofgriefmaybeexperiencedatdifferenttimesandinvaryingdegreesofintensity.Thisworkrequirespatienceandthebeliefthatyouwillsurvive.Hospiceisreadytohelpyouthroughthisprocess.

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Emotional-Spiritual-Mental Signs and Symptoms with Appropriate Responses1. Withdrawal.Thepersonmayseem unresponsive,withdrawn,orina comatose-likestate.Thisindicates preparationforrelease,adetachingfrom surroundingsandrelationships,anda beginningof“lettinggo.”Sincehearing

remainsallthewaytotheend,speaktoyourlovedoneinyournormaltoneofvoice,

identifyingyourselfbynamewhenyouspeak,holdtheirhand,andsaywhateveryouneedtosaythatwillhelptheperson“letgo.”

2. Vision-like Experiences.Thepersonmayspeaktopersonswhohavealreadydiedorseeplacesnotpresentlyvisibletoyou.Thisdoesnot

usuallyindicateahallucinationoradrug reaction.Thepersonisbeginningtodetach

fromthislifeandisbeingpreparedforthetransitionsoitwillnotbefrightening.Donotcontradict,explainaway,belittle,orargueaboutwhatthepersonclaimstohaveseenorheard.Justbecauseyoucannotseeorhearitdoesnotmeanit’snotrealtoyourlovedone.Affirmtheirexperiences.Theyarenormalandcommon.Iftheyfrightenyourlovedone,explainthatthesearenormalexperiences.

3. Restlessness. Thepersonmayperform repetitiveandrestlesstasks.Thismayinpart

indicatethatsomethingisstillunresolvedorunfinishedthatisdisturbingthemand

preventingthemfromlettinggo.Your hospiceteammemberswillassistyouin identifyingwhatmaybehappeningandhelp

youfindwaystohelpthepersonfindreleasefromthetensionorfear.Otherthingsthatmaybehelpfulincalmingthepersonaretorecallafavoriteplaceorexperiencethe

personenjoyed,readsomethingcomforting,playmusic,andgiveassurancethatitisokaytoletgo.

4. Fluid and Food Decrease.Whenthepersonmaywantlittleornofluidorfood,thismayindicatethatthepersonisreadyforthefinalshutdown.Donottrytoforcefoodorfluid.Youmayhelpyourlovedonebygivingthempermissiontoletgowhenevertheyareready.Atthesametimeaffirmtheperson’songoingvaluetoyouandthegoodthatyoureceivedfromthemthatyouwillcarryforwardintoyourlife.

5. Decreased Socialization.Thepersonmayonlywanttobewithaveryfeworevenjustone

person.Thisisasignofpreparationforreleaseandanaffirmingofwhothesupportismostneededfrominordertomaketheappropriatetransition.Ifyouarenotpartofthis“innercircle”attheend,itdoesnotmeanyouareunimportantorarenotloved.Itmeansyouhavealreadyfulfilledyourtaskwiththem,anditisthetimeforyoutosay“good-bye.”Ifyouarepartofthefinal“innercircle”ofsupport,thepersonneedsyour

affirmation,support,andpermissiontoletgo.

6. Unusual Communication.Thepersonmaymakeaseemingly“out-of-character”or

nonsequiturstatement,gesture,orrequest.Thisindicatesthattheyarereadytosay“

good-bye”andare“testing”toseeifyouarereadytoletthemgo.Acceptthemomentas

abeautifulgiftwhenitisoffered.Kiss,hug,hold,cry,andsaywhateveryoumostneedtosay.

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7. Giving Permission.Givingpermissiontoyourlovedonetoletgowithoutmakingthemfeelguiltyforleavingortryingtokeepthemwithyoutomeetyourownneedscanbedifficult.Adyingpersonwillnormallytrytoholdon,eventhoughitbringsprolongeddiscomfort,inordertobesurethatthosewhoaregoingtobeleftbehindwillbeallright.Therefore,yourabilitytoreleasethedyingpersonfromthisconcernandgivethemassurancethatit’sallrighttoletgowhenevertheyarereadyisoneofthegreatestgiftsyouhavetogiveyourlovedoneatthistime.

8. Saying Good-bye.Whenthepersonisreadytodieandyouareabletoletgo,thenisthetimetosay“good-bye.”Saying“good-bye”isyourfinalgiftoflovetoyourlovedone,foritachievesclosureandmakesthefinalreleasepossible.Itmaybehelpfultolayinbedwiththepersonandholdthem,ortaketheirhandandthensayeverythingyouneedtosay.Itmaybeassimpleassaying,“Iloveyou.”Itmayincluderecountingfavoritememories,placesandactivitiesyoushared.Itmayinclude

saying,“I’msorryforwhateverIcontributedtoanytensionsordifficultiesinour

relationship.”Itmayalsoincludesaying,“Thankyoufor...”.Tearsareanormalandnaturalpartofsaying“good-bye.”Tearsdonotneedtobehiddenfromyourlovedoneorapologizedfor.Tearsexpressyourloveandhelpyouletgo.

How do you know death has occurred?Althoughyoumaybepreparedforthedeathprocess,youmaynotbepreparedfortheactualdeathmoment.Itmaybehelpfulforyouandyourfamilytothinkaboutanddiscusswhatyouwoulddoifyouweretheonepresentatthedeathmoment.Thedeathofahospicepatientisnotanemergency.Nothingmustbedoneimmedi-ately.Thesignsofdeathincludesuchthingsas:nobreathing,noheartbeat,releaseofbowelandbladder,noresponse,eyelidsslightlyopen,pupilsenlarged,eyesfixedonacertainspot,noblinking,jawrelaxed,andmouthslightlyopen.Donotcall911.IfyouwouldliketositwiththepersonforsometimebeforecallingHospice,pleasedo.CalltheHospicenurse.Thenurseorsocialworkerwillvistatyourrequest.

Thebodydoesnothavetobemoveduntilyouareready.Ifthefamilywantstoassistinpreparingthebodybybathingordressing,thatmaybedone.Thepolicedonotneedtobecalled.Thehospicenursewillnotifythephysicianandfuneralhomeandwillassistingettingequipmentremovedfromthehome.

FranciscanHospicemakesspiritualandemotionalsupportavailabletobothpatientandfamilymembers.Chaplainsandcounselorsareavailabletomeetyoutodiscussfuneralplanningandissuesrelatingtogriefandloss,andtosupportyouthroughthistimeoftransitionandtransformation.

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Personal Record ProfileEveryone,andparticularlypeopleexperiencingaterminalillness,willneedcertaindocumentsandrecordsassembledinoneplaceorfile.Amanilaenvelope,markedtoshowitscontents,andkeptinaplaceknowntoyoursurvivors,issufficient.Thiswillsaveyourlovedonesconsiderabledifficulty.Inthisenvelopeyoushouldhave(ifapplicable)copiesororiginalsofthefollowing.

•Will,withnameandaddressofattorney

•Life,property,andautoinsurancepolicies withnameandaddressesoflifeinsurance advisors

•Realestatedeeds,titlepolicies,closing statements,mortgages,recordofmortgage payments,taxreceiptsforhome improvementsovertheyears,etc.

•Leases

•Nameandaddressofbroker,orthestock certificatesandbondsyouown(plusthe purchaseslipsorotherrecordsofcostand dateofpurchases)

•Nameofbanks,accountnumbers(including savingsbankbooksandthenamesofbank officerswithwhomyoudeal)

•Listofotherassetsandlocations(including loansandaccountsreceivable)

•Safedepositkey,nameofbank,andbox number

•Incometaxreturnsforthelastthreeyears, plusthenameandaddressofperson preparingthesereturns

•Birthcertificatesforyourself,yourspouse, andyourdependents

•Marriagecertificatesorproofofdivorce,if appropriate

•Automobileownershipcertificatesand registrationreceipts

•Socialsecuritycardandrecordofnumbers

•Veteran’sdischargepaperorcertificate

•Contractstowhichyouareaparty(including installmentpurchaseragreements)

•Businessrecords

•Chargeaccountnumbersandcards

•Receipts,appraisals,orvaluationsforitemsof substantialvaluesuchasjewelry,furs, furniture,silver,artobjects,antiques,etc.

•Listofcloserelatives,addressesandphone numbers

•Burialinstructions(includinglocationofplot andnameoffuneraldirector)

•Generaldirectionstosurvivingspouseand children

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FUNERAL/MEMORIAL PLANNING

Fullandlegalname:

Name,addressandphoneoffuneraldirectoryoudesire:

Ifanyprearrangementshavebeenmade,pleaseindicatewhetherallorsomeoftheseprearrangements

havebeenprepaid:

Locationofwill:

Executor:

PowerofAttorney:

Locationofsafetydepositboxandkey:

Name,addressandphoneofyourattorney/banktrustdepartment:

Thelotnumberandlocationofcemetery,ifapplicable:

Ifyoudonothaveacemeteryplot,wheredoyouwishtobeburied?

Kindofgravemonumentormarkeryouwish:

Ifyouownamausoleumspace,whereisit:

Doyouwishtobecrematedand,ifso,whatdoyouwishtohavedonewithyourremains?

Instructionsconcerningselectionofcasketandvault:

Data and Preferences for Consideration Following Death

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Doyousuggestyoursurvivorshave“callinghours”oravisitation?

a.Ifyes,where?

b.Ifyes,shouldcasketbeopenedorclosed?

Listanythingspecialyouwishtowearorhaveburiedwithyou:

Istheservicetobepublicorprivate?

Name,addressandphoneofclergypersonorotherofficiant:

Specialrequestsforservice(hymns,othermusic,readings,etc.):

Inadditiontoorinsteadofflowers,doyouwishdonationsmadeinyourmemoryandwhere?

Name,addressandphonenumbersofpersonsyouwouldliketohaveascasketbearers:

Anythingspecialyouwishtohaveplacedinyourobituary?

Newspapersinwhichyourobituaryand/orpaiddeathnoticeistobeplaced:

Areyoudonatingyourbodyoranypartthereoftomedicalscience?

Ifso,whereisthepermissioncard,whatpartofyourbodyisdonated,andwhoshouldbenotified?

Anyadditionalinformationorpersonaldesiresnotcoveredinthischecklist?

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Funeral Memorial PlanningManyindividualsandfamilieshaveadifficulttimemakingplansforafterdeath.Therealityofone’slifecomingtoanendorsayingafinalgood-byetoonewelovecanbepainfultoface,letalonetomakeplansfor.Yet,manyofusfeelaneedtogatherwithotherrelativesandfriendsandparticipateintheancientritualofthefuneralormemorialservice.Weseemtoknowthatthistraditionhasapurposeandsomehowhelpsuscopewithlossandembracethemysteryofdeath.

Thereisno“right”waytodotheservice,noperfectfuneralplan.Thechoicesyoumakefortheservicemaynotbeasimportantasyourverypersonalreasonsformakingthem.Achaplain,religiousleaderorfuneraldirectorcanhelpyouthinkthroughwhatwillbringcomforttofamilyandfriendsandwillhonorthememoryofyourlovedone.Aservicethatcelebratesthefullnessoflife—andthelastingmemories,qualitiesandaccomplishments—canhelpfamilyandfriendsthroughtheirgriefandassisttheminfindingthestrengthtofacethefuture.

Youmightconsidertakingthetimewithyourlovedonestosharewhatyouwouldliketohaveinyourfuneral/memorialservice.Planningone’sownmemorialcanbeanopportunitytosaythosethingstolovedonesandfriendsthroughpersonalwritings,speciallyselectedmusic,poetryorreadingsfromliterature.Ifitisplannedasaprojectwithotherfamilymembersandfriends,theprocessitselfmayhelpeveryonetocelebrateyourlife.Ifyouarenotinvolvedinplanningyourownservice,familyandfriendscancreate,select,readandsharethosethingstheywouldliketoinclude,ortheymaybereadbythepresider.Photographs,favoriteobjectsandsymbolscollectedona“memorytable”mayhelpfriendsandrelativessharetheirrecollections.Tellingstoriescanmixlaughterwithtearsandhelppreservepreciousmemories.

Thefollowingisageneraloutlineforamemorialservice.Thisisonlyanexample,anencouragementforyoutouseyourownfaith,tradition,beliefsandneedstodirectyouincreatingagatheringthatwillhelpyousaygood-bye.

Ingredients for a Funeral or Memorial Service •Musicforgathering(prelude)

•Welcomebypresider

•Openingprayer

•Specialsongormusicalselection

•Readingsfromscriptureorliterature

•Homilyorshorttalkbypresider

•Sharingbyfamilyorfriends

•Specialsongormusicalselection

•Walkingbycasketforfinalgood-byeifcasket ispresentandfamilydesiresit

•Burial

•Receptionathome,churchorfuneralhome

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Meaningfulfuneralsdonotjusthappen.Theyarewellthoughtoutritualsthat,atleastforadayortwo,demandyourfocusandyourtime.Buttheplanningmayfeellessburdensomeifyoukeepinmindthattheenergyyouexpendnowtocre-ateapersonalized,inclusiveceremonywillhelpyou,yourfamily,andothermournersembarkonhealthy,healinggriefjourneys.

Thefollowinglistisintendedtoempoweryoutocreateafuneralthatwillbemeaningfultoyouandyourfamilyandfriends.

1. You have the right to make use of ritual.Thefuneralritualdoesmorethan

acknowledgethedeathofsomeoneloved.Ithelpsprovideyouwiththesupportofcar-ingpeople.Itisawayforyouandotherswholovedthepersonwhodiedtosay,“Wemournthisdeathandweneedeachotherduringthispainfultime.”Ifotherstellyouthatritualssuchasthesearesillyorunnecessary,don’t

listen.

2. You have the freedom to plan a funeral that will meet the unique needs of your family. Whileyoumayfindcomfortandmeaningintraditionalfuneralceremonies,youalsohavetherighttocreateaceremonythatreflectstheuniquepersonalityofyourfamilyandthe

personwhodied.Donotbeafraidtoadd personaltouchestoeventraditionalfunerals.

3. You have the freedom to ask friends and family members to be involved in the

funeral.Formany,funeralsaremost meaningfulwhentheyinvolveavarietyof peoplewholovedthepersonwhodied.You

mightaskotherstogiveareading,delivertheeulogy,playmusic,orevenhelpplanthefuneral.

4. You have the freedom to view the body before and during the funeral.Whileviewingthebodyisnotappropriateforallculturesandfaiths,manypeoplefindithelpsthemacknowledgetherealityofthedeath.Italsoprovidesawaytosaygoodbyetothepersonwhodied.Therearemanybenefitstoviewingsandopen-casketceremonies;don’tletotherstellyouthispracticeismorbidorwrong.

5. You have the freedom to embrace your pain during the funeral.Thefuneralmaybeoneofthemostpainfulbutalsothemostcathar-ticmomentsofyourlife.Allowyourselftoembraceyourpainandtoexpressitopenly.Donotbeashamedtocry.Findlistenerswhowillacceptyourfeelingsnomatterwhattheyare.

Ten Freedoms for Creating Meaningful Funeral Ceremonies

39

Alan D. Wolfelt, Ph.D., Director, Center for Loss and Life Transition Fort Collins, Colorado

6. You have the freedom to plan a funeral that will reflect your spirituality.Iffaithisapartofyourlife,thefuneralisanidealtimeforyoutoupholdandfindcomfortinthatfaith.Thosewithmoresecularspiritualorientationsalsohavethefreedomtoplanaceremonythatmeetstheirneeds.

7. You have the freedom to search for meaning before, during, and after the funeral.Whensomeoneloveddies,youmayfindyourselfquestioningyourfaithandtheverymeaningoflifeanddeath.Thisisnaturalandinnowaywrong.Don’tletothersdismissyoursearchformeaningwithclichedresponsessuchas“ItwasGod’swill”or“Thinkofwhatyoustillhavetobethankfulfor.”

8. You have the freedom to make use of memory during the funeral.Memoriesareoneofthebestlegaciesthatexistafterthedeathof

someoneloved.Youwillalwaysremember.Askyourfuneralofficianttoincludememoriesfrommanydifferentpeopleintheeulogy.Createa“memoryboard”ora“memorytable.”Askthoseattendingthefuneraltosharewithyoutheirmostspecialmemoryofthepersonwhodied.

9. You have the freedom to be tolerant of your physical and emotional limits. Especiallyinthedaysimmediatelyfollowingthedeath,yourfeelingsoflossandsadnesswillprobablyleaveyoufeelingfatigued.Respectwhatyourbodyandmindaretellingyou.Getdailyrest.Eatbalancedmeals.

10. You have the freedom to move toward your grief and heal. Whilethefuneralisanevent,yourgriefisnot.Reconcilingyourgriefwillnothappenquickly.Bepatientandtolerantwithyourselfandavoidpeoplewhoare

impatientandintolerantwithyou,before,during,andafterthefuneral.Neitheryounorthosearoundyoumustforgetthatthedeathofsomeonelovedchangesyourlifeforever.

Reproduced with the permission of, and written by Dr. Alan Wolfelt,

Director, Center for Loss and Life Transition, 3735 Broken Bow Rd,

Fort Collins, CO 80526

* Ten Freedoms for Creating Meaningful Funeral Ceremonies (Wallet

Cards—available for purchase) * Companion Press

(970) 226-6050

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How to Support Franciscan Hospice

FranciscanHospicedependsonyourdonationstohelpusenhancethequalityoflifeforthepatientsandfamiliesweserve.Someofourservices,includingcomforttherapies,arefundedexclusivelybydonations.AllgiftstoFranciscanHospicearereceivedandadministeredbytheFranciscanFoundation,whosestaffisavailabletoanswerquestionsandhelpyoudecidehowtobestexpressyourappreciationfortheservicesofFranciscanHospice.

Memorial GiftsMemorialgiftscanbemadeusingthedonationenvelopeinthisinformationbookletorbysendingcontributionstotheaddressbelow.SomefamiliesmaywishtodesignatememorialgiftstoFranciscanHospiceinlieuofflowers.Eachdonationwillbeacknowledgedinwriting,andanoticeofthegiftwillbesenttothefamilyofthedeceased.Formoreinformationaboutmakingamemorialgift,contactourDirectorofAnnualGiving(seebelow).

Bequest GiftsYoumightwanttojoinourmanyfriendswhohavehelpedbymakingabequest—agiftmadethroughyourwillorlivingtrust.Bequestgiftsmaybemadeforaspecificitemoramount,asapercentageofyourestate,and/orasacontingentgift(agiftmadeonlyafteryouhaveprovidedforallofyourlovedones).YoumayaddabequesttoFranciscanHospiceusingacodiciltoyourexistingwillorbycreatinganewwill.FormoreinformationandsuggestedbequestlanguagethatwillensureyourbequestisdirectedtoFranciscanHospice,contactourDirectorofMajorandPlannedGiving(seebelow).

Planned GiftsThereareotherwaystomakeaplannedgifttoFranciscanHospice,includingnamingHospiceasabeneficiaryofyourindividualretirementaccountorlifeinsurancepolicy,creatingacharitableremindertrustorcharitablegiftannuity,ordonatingappreciatedstockorrealestate.Inmanyinstances,thetaxsavingsareexcellent.Todeterminethebestwaytogive,contactourDirectorofMajorandPlannedGiving(seebelow).

Gifts of TimeInadditiontosupportingFranciscanHospicefinancially,manypeopleenjoyinvestingtheirtime,talentandexpertiseasHospicevolunteers.Hospiceoffersawidevarietyofvolunteeropportunities,frompatient/familycaretoofficework,sportingevents,andgardening.Tohelpyoufindavolunteerrolethat’srightforyou,contactourVolunteerManagerat253.534.7070.

Everyoneisorwillbeaffectedbydeathorgriefintheirlifetime.Yourgift,bigorsmall,willmakeadifferenceinsomeone’slifeandinthequalityofcareavailabletothosefacingterminalillness.

Director of Annual Giving253.428.8483

Director of Major and Planned Giving253.428.8415

Franciscan FoundationP.O. Box 1502Tacoma, WA 98401-1502Phone: 253.428.8411Fax: 253.428.8466Toll free: 888.814.3740Web: www.foundation.FHShealth.orgEmail: foundation@fhshealth.org

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Notes

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21-1003, 6/10, 4K

Franciscan Hospice and palliative care

2901 Bridgeport Way WestUniversity Place, WA 98466

For more information call: 1-800-338-8305To make a referral call: 1-866-969-7028

Referral fax: 253-534-7098

www.hospice.FHShealth.org