module 1: introduction to palliative nursing care

End-of-Life Nursing Education ConsortiumEnd-of-Life Nursing Education Consortium

ELNEC- For Veterans

Palliative Care For VeteransPalliative Care For Veterans

Module 1: Module 1:

Introduction to Introduction to Palliative Nursing Palliative Nursing

CareCare

EE LL NN EE CC For Veterans CurriculumFor Veterans Curriculum

Veterans Affairs MottoVeterans Affairs MottoVeterans Affairs MottoVeterans Affairs Motto

“…“…to bind up the nation’s to bind up the nation’s wounds, wounds, to care for him to care for him who shall have borne the who shall have borne the battlebattle and for his widow, and for his widow, and his orphan, to do all and his orphan, to do all which may achieve and which may achieve and cherish a just and lasting cherish a just and lasting peace among ourselves and peace among ourselves and with all nations.”with all nations.”

President Abraham LincolnPresident Abraham Lincoln22ndnd Inaugural Address Inaugural Address


Mission of the Department of Veterans Mission of the Department of Veterans Affairs Hospice and Palliative Care Affairs Hospice and Palliative Care ProgramProgram

Mission of the Department of Veterans Mission of the Department of Veterans Affairs Hospice and Palliative Care Affairs Hospice and Palliative Care ProgramProgram

“ “To honorTo honor Veterans’ Veterans’

preferences for preferences for care at end care at end

of life.”of life.”Department of Veterans Affairs Office of Geriatrics Department of Veterans Affairs Office of Geriatrics and Extended Care http://www.va.govand Extended Care http://www.va.gov


Demographics of VeteransDemographics of VeteransDemographics of VeteransDemographics of Veterans

• ProjectedProjected–Over 5,000,000 Veterans cared Over 5,000,000 Veterans cared for at a VA facility/year for at a VA facility/year

–US Veterans: 23,442,000US Veterans: 23,442,000

–Deaths of WW II Veterans/day:Deaths of WW II Veterans/day: 900 900

–% of Veterans over the age of % of Veterans over the age of 65: 39.4%65: 39.4%

National Center for Veterans Analysis and National Center for Veterans Analysis and Statistics, 2009; Casarett et al., 2008aStatistics, 2009; Casarett et al., 2008a


The Facts About Veteran DeathsThe Facts About Veteran DeathsThe Facts About Veteran DeathsThe Facts About Veteran Deaths

• More than 50,000 Veterans die a month More than 50,000 Veterans die a month (600,000/year)(600,000/year)

–23,000 die in VA inpatient23,000 die in VA inpatient

settings/yearsettings/year

• Veteran deaths account for almost 28% Veteran deaths account for almost 28% of all deaths in the USof all deaths in the US

• Approximately 85% do not receive Approximately 85% do not receive care in a VA facilitycare in a VA facility

• Only 4% die in a VA facilityOnly 4% die in a VA facility

NHPCO, 2010NHPCO, 2010


Veterans in the CommunityVeterans in the CommunityVeterans in the CommunityVeterans in the Community

• Nearly 40% of enrolled Nearly 40% of enrolled Veterans live in rural Veterans live in rural communitiescommunities

• 121,000 Veterans are 121,000 Veterans are without shelter or without shelter or healthcare, hence no healthcare, hence no access to access to hospice/palliative carehospice/palliative care

NHPCO, NHPCO, 20102010


Nurses Caring for Veterans at the End of Nurses Caring for Veterans at the End of Life Must Understand the CultureLife Must Understand the CultureNurses Caring for Veterans at the End of Nurses Caring for Veterans at the End of Life Must Understand the CultureLife Must Understand the Culture

• Enrolled VeteransEnrolled Veterans

–Social isolationSocial isolation–Lack of family supportLack of family support–Low incomeLow income

• Military camaraderieMilitary camaraderie

• Culture of stoicismCulture of stoicism

US Department of VA Affairs, VA Health Administration, 2005US Department of VA Affairs, VA Health Administration, 2005


Characteristics of VHA and Characteristics of VHA and Unique Characteristics of Enrolled Unique Characteristics of Enrolled VeteransVeterans

Characteristics of VHA and Characteristics of VHA and Unique Characteristics of Enrolled Unique Characteristics of Enrolled VeteransVeterans

Back et al., 2005; Casarett et al., 2008a; Finlay et al., 2008

•The largest integrated healthcare The largest integrated healthcare system in the USsystem in the US

•Multi-layered benefits system Multi-layered benefits system

•Large elderly populationLarge elderly population

•Higher percent of homelessness Higher percent of homelessness than in general populationthan in general population

•Multiple co-morbiditiesMultiple co-morbidities


Various Experiences Can Affect a Various Experiences Can Affect a Veterans DyingVeterans DyingVarious Experiences Can Affect a Various Experiences Can Affect a Veterans DyingVeterans Dying

Department of Veterans Affairs, VA Health Administration & Office of Department of Veterans Affairs, VA Health Administration & Office of Geriatrics and Extended Care, 2005Geriatrics and Extended Care, 2005

• What branch of service?What branch of service?

• Enlisted? Drafted? Rank?Enlisted? Drafted? Rank?

• Age?Age?

• Combat and/or POW Combat and/or POW experience?experience?

• PTSD (assess for social isolation, PTSD (assess for social isolation, alcohol abuse, anxieties)?alcohol abuse, anxieties)?

• StoicismStoicism


We Do Not Always Die the We Do Not Always Die the Way We Would Prefer Way We Would Prefer We Do Not Always Die the We Do Not Always Die the Way We Would Prefer Way We Would Prefer

•Care at homeCare at home•Fear of painFear of pain•Financial burdenFinancial burden•Invasive, painful treatmentsInvasive, painful treatments•Dependence on othersDependence on others•Role changesRole changes•Elderly caring for the sickElderly caring for the sick

Boni-Saenz et al., 2005; Egan-City & Labyak, 2010Boni-Saenz et al., 2005; Egan-City & Labyak, 2010


Hospice and Palliative CareHospice and Palliative CareHospice and Palliative CareHospice and Palliative Care

• PALLIATIVE CAREPALLIATIVE CARE

– Ideally begins at the timeIdeally begins at the time

of diagnosisof diagnosis

– Can be used to Can be used to

complement complement

treatmentstreatments

• HOSPICEHOSPICE

– Most intense form ofMost intense form of

palliative carepalliative care

– Less than 6 months to Less than 6 months to

livelive

– Agrees to enroll in Agrees to enroll in

hospice hospice

– Chooses not to receive Chooses not to receive

aggressive careaggressive careNCP, 2009NCP, 2009


Hospice and Palliative Care Hospice and Palliative Care cont.cont.Hospice and Palliative Care Hospice and Palliative Care cont.cont.

• BOTHBOTH– Interdisciplinary careInterdisciplinary care

– Provide pain and symptomProvide pain and symptom

managementmanagement

– Physical, emotional, socialPhysical, emotional, social

and spiritual care and spiritual care


Palliative CarePalliative CarePalliative CarePalliative Care

NCP, 2009NCP, 2009


Death and Dying in America:Death and Dying in America:TodayTodayDeath and Dying in America:Death and Dying in America:TodayToday

• Over 4700 hospice programs in the USOver 4700 hospice programs in the US

• Average length of stay in hospice is 69 days (median=21 days)Average length of stay in hospice is 69 days (median=21 days)

• In 2007: 1,560,000 patients received hospice services and 41.6% of In 2007: 1,560,000 patients received hospice services and 41.6% of all deaths in the US were under the care of a hospice program all deaths in the US were under the care of a hospice program

• Patients with chronic illnesses make up the majority of hospice Patients with chronic illnesses make up the majority of hospice patients (i.e. heart disease, dementia, etc) patients (i.e. heart disease, dementia, etc)

NHPCO, 2005 & 2010aNHPCO, 2005 & 2010a


Barriers to Quality Care at End of Barriers to Quality Care at End of LifeLifeBarriers to Quality Care at End of Barriers to Quality Care at End of LifeLife• Failure to acknowledge limits of medicineFailure to acknowledge limits of medicine

• Lack of training for healthcare providersLack of training for healthcare providers

• Hospice/palliative care services are misunderstoodHospice/palliative care services are misunderstood

• Many rules and regulationsMany rules and regulations

• Denial of deathDenial of death

Glare et al., 2003Glare et al., 2003


History of Palliative Care in VAHistory of Palliative Care in VAHistory of Palliative Care in VAHistory of Palliative Care in VA• 1992: Policy— “All Veterans should be provided access to a 1992: Policy— “All Veterans should be provided access to a

hospice program…”hospice program…”

• 1998-2000: VA Faculty Leaders Project for Improved Care 1998-2000: VA Faculty Leaders Project for Improved Care at the End of Lifeat the End of Life

• 2001: Training and Program Assessment for Palliative Care 2001: Training and Program Assessment for Palliative Care (TAPC)(TAPC)

• 2001-2003: TAPC launched the VA Hospice & Palliative 2001-2003: TAPC launched the VA Hospice & Palliative Care Initiative (VAHPC)Care Initiative (VAHPC)

– VAHPC Launched Hospice-Veteran Partnership (HVP)VAHPC Launched Hospice-Veteran Partnership (HVP)

NHPCO, 2010bNHPCO, 2010b


History of Palliative Care in the History of Palliative Care in the VA (cont.)VA (cont.)History of Palliative Care in the History of Palliative Care in the VA (cont.)VA (cont.)

• 2003-Present: Palliative Care 2003-Present: Palliative Care Consultative Team (PCCT) and Consultative Team (PCCT) and Accelerated Administration & Clinical Accelerated Administration & Clinical Training (AACT)Training (AACT)

• 2009- Comprehensive End of Life Care 2009- Comprehensive End of Life Care Initiative (CELC)Initiative (CELC)

– PROMISEPROMISE


Palliative Care in the VA TodayPalliative Care in the VA TodayPalliative Care in the VA TodayPalliative Care in the VA Today

• VA provides palliative care consultation services at VA provides palliative care consultation services at – ALL of its medical centersALL of its medical centers– Many Community Living Centers (CLC)Many Community Living Centers (CLC)– And contracts with community-based hospice programs And contracts with community-based hospice programs

to enhance VA’s ability to meet the end-of-life services to enhance VA’s ability to meet the end-of-life services of its Veteransof its Veterans

• Over 60% of all Veterans who die in VA facilities receive Over 60% of all Veterans who die in VA facilities receive care from a palliative care teamcare from a palliative care team

Department of Veteran Affairs, VA Public Affairs, Department of Veteran Affairs, VA Public Affairs, 20082008


Benefits of Palliative Care Consultation Benefits of Palliative Care Consultation Teams (PCCT) in VATeams (PCCT) in VABenefits of Palliative Care Consultation Benefits of Palliative Care Consultation Teams (PCCT) in VATeams (PCCT) in VA

• Veteran’s goals of care are identifiedVeteran’s goals of care are identified

• Less likely to be admitted to ICULess likely to be admitted to ICU

• Laboratory and technological tests Laboratory and technological tests decreaseddecreased

• Communication between PCCT and Communication between PCCT and Veteran allow goals to be honoredVeteran allow goals to be honored

Penrod et al., 2006Penrod et al., 2006


Differences in Cause of Chronic Differences in Cause of Chronic Illness and Death by WarsIllness and Death by WarsDifferences in Cause of Chronic Differences in Cause of Chronic Illness and Death by WarsIllness and Death by Wars

• World War IIWorld War II• Korean WarKorean War• VietnamVietnam• Gulf WarGulf War• Operation Enduring Operation Enduring

Freedom/Operation Freedom/Operation Iraqi FreedomIraqi Freedom


Eligibility for VA Hospice BenefitEligibility for VA Hospice BenefitEligibility for VA Hospice BenefitEligibility for VA Hospice Benefit

• Included in the Medical Benefits Package Included in the Medical Benefits Package (both inpatient or home settings)(both inpatient or home settings)

• Eligible for both VA and Medicare may Eligible for both VA and Medicare may elect to have hospice paid for under elect to have hospice paid for under Medicare Hospice BenefitMedicare Hospice Benefit

Department of Veterans Affairs, VA Health Administration & Office of Geriatrics and Extended Care, 2005


Providing Hospice Services to a Providing Hospice Services to a Veteran who Becomes an InpatientVeteran who Becomes an InpatientProviding Hospice Services to a Providing Hospice Services to a Veteran who Becomes an InpatientVeteran who Becomes an Inpatient

• GENERALLY, VA provides needed GENERALLY, VA provides needed inpatient hospice care at a VA inpatient hospice care at a VA facility (preferred option)facility (preferred option)

• VA may utilize Community Nursing VA may utilize Community Nursing Home (CNH) contractsHome (CNH) contracts

• VA may purchase inpatient hospice VA may purchase inpatient hospice services from a community providerservices from a community provider

Department of Veterans Affairs, VA Health Administration & Office of Geriatrics and Extended Care, 2005


Prognostication: May Be Used to Prognostication: May Be Used to Establish Goals of CareEstablish Goals of CarePrognostication: May Be Used to Prognostication: May Be Used to Establish Goals of CareEstablish Goals of Care

• Performance statusPerformance status–ECOG and Karnofsky are ECOG and Karnofsky are

poor indicatorspoor indicators

• Multiple symptomsMultiple symptoms

• Biological markersBiological markers–Albumin, etc.Albumin, etc.

• ““Would I be surprised if Would I be surprised if this Veteran died within this Veteran died within the next 6 months?”the next 6 months?” Glare et al., 2010; Lamont & Christakis, Glare et al., 2010; Lamont & Christakis,

2007; Lynn et al., 20002007; Lynn et al., 2000


Two Palliative Care Frameworks Two Palliative Care Frameworks for Assessing Patientsfor Assessing PatientsTwo Palliative Care Frameworks Two Palliative Care Frameworks for Assessing Patientsfor Assessing Patients

• Making Promises Making Promises Document:Document:

–Begin by envisioning what aBegin by envisioning what a better care system would better care system would look like look like

• Quality of Life Model:Quality of Life Model:–Identify physical, Identify physical, psychological, social, and psychological, social, and spiritual aspects of carespiritual aspects of care


Making PROMISES:Making PROMISES:Changing Systems of CareChanging Systems of CareMaking PROMISES:Making PROMISES:Changing Systems of CareChanging Systems of Care

• Good Medical TreatmentGood Medical Treatment

• Never Overwhelmed by SymptomsNever Overwhelmed by Symptoms

• Continuity, Coordination, & ComprehensivenessContinuity, Coordination, & Comprehensiveness

• Well Prepared, No SurprisesWell Prepared, No Surprises

• Customized Care, Reflecting Your PreferencesCustomized Care, Reflecting Your Preferences

• Consideration for Patient and Family ResourcesConsideration for Patient and Family Resources

• Make the Best of Every DayMake the Best of Every DayLynn et al., 2000


QUALITY OF LIFE MODEL: Addressing Four QUALITY OF LIFE MODEL: Addressing Four Dimensions of CareDimensions of CareQUALITY OF LIFE MODEL: Addressing Four QUALITY OF LIFE MODEL: Addressing Four Dimensions of CareDimensions of Care

PhysicalPhysicalFunctional AbilityStrength/Fatigue

Sleep & RestNausea

AppetiteConstipation

Pain

PsychologicalPsychologicalAnxiety

DepressionEnjoyment/Leisure

Pain DistressHappiness

FearCognition/Attention

Quality of LifeQuality of Life

SocialSocialFinancial BurdenCaregiver Burden

Roles and RelationshipsAffection/Sexual Function

Appearance

SpiritualSpiritualHope

SufferingMeaning of Pain

ReligiosityTranscendence

Adapted from Ferrell et al., 1991Adapted from Ferrell et al., 1991


Role of the Nurse in Improving Role of the Nurse in Improving Palliative Care for All PatientsPalliative Care for All PatientsRole of the Nurse in Improving Role of the Nurse in Improving Palliative Care for All PatientsPalliative Care for All Patients

• More time at the bedside than More time at the bedside than other healthcare providersother healthcare providers

• Some things cannot be “fixed”Some things cannot be “fixed”

• Use of therapeuticUse of therapeuticpresencepresence

• Maintain a realistic Maintain a realistic perspectiveperspective

• Keep Veteran’s goals first in Keep Veteran’s goals first in all communication with the all communication with the teamteam


Maintaining Hope in the Midst of Maintaining Hope in the Midst of DeathDeathMaintaining Hope in the Midst of Maintaining Hope in the Midst of DeathDeath

• Experiential processesExperiential processes

• Spiritual processesSpiritual processes

• Relational processesRelational processes

• Rational thought Rational thought processesprocesses

Ersek & Cotter, 2010Ersek & Cotter, 2010


Extending Palliative Care for Extending Palliative Care for Veterans Across Various Veterans Across Various Settings Settings

Extending Palliative Care for Extending Palliative Care for Veterans Across Various Veterans Across Various Settings Settings

• Nurses are the constant Nurses are the constant caregiverscaregivers

– In-patient settingsIn-patient settings

– ClinicsClinics

– Community living centersCommunity living centers

• Expand the concept of healingExpand the concept of healing

• Become well-educatedBecome well-educated

• Willing to be a “change agent”Willing to be a “change agent”


Final ThoughtsFinal ThoughtsFinal ThoughtsFinal Thoughts• Quality palliative care Quality palliative care

addresses quality of life addresses quality of life for ALL patientsfor ALL patients

• Increased nursing Increased nursing knowledge is essentialknowledge is essential

• ““Being with”Being with”

• Interdisciplinary care is Interdisciplinary care is vital vital


Consider…….Consider…….Consider…….Consider…….

What steps do you need to What steps do you need to take to improve palliative take to improve palliative care at your institution so care at your institution so that you and other that you and other members of the team are members of the team are prepared to “care for prepared to “care for him who shall have borne him who shall have borne the battle…?”the battle…?”

module 1: introduction to palliative nursing care

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