Module 1: Introduction to Palliative Nursing Care

Key Learning Objectives At the completion of this module, the participant will be able to: Describe the role of the nurse in providing quality palliative care for Veterans. Identify the need for collaboration with interdisciplinary team members while implementing the nursing role in palliative care. Recognize the unique demographics, health care economics, and service delivery for Veterans that necessitates improved professional preparation in palliative care. Describe the philosophy and principles of palliative care and hospice palliative care that can be integrated across settings to affect quality care at the end of life for all patients. Discuss aspects of assessing physiological, psychological, spiritual, and social domains of Veterans and families facing a life-threatening illness or event. Explain various resources available to Veterans and their families.

Department of Veterans Affairs Motto “…to bind up the nation’s wounds, to care for him who shall have borne the battle and for his widow, and his orphan, to do all which may achieve and cherish a just and lasting peace among ourselves and with all nations.” President Abraham Lincoln 2nd Inaugural Address

“To honor Veterans’ preferences for care at end of life.” Department of Veterans Affairs Hospice and Palliative Care Program’s Mission “To honor Veterans’ preferences for care at end of life.” VHA, 2008b, p.1

Demographics of Veterans Projected Total U.S. Veterans population: 21,681,000 Women Veterans population: 2,035,213 Surviving WWII Veterans: 697,806 Enrolled Veterans are older adults; multiple comorbidities Homeless Veterans VA, 2015a; National Alliance to End Homelessness, 2015

Characteristics of the Veterans Health Administration (VHA) The largest integrated healthcare system in the U.S. Many layers and program services Nurses care for Veterans in VA and non-VA community settings Casarett et al., 2008a & 2008b; NHPCO, 2011

Facts about Veteran Deaths and Palliative Care in the VA Less than 4% of Veterans die in VA facilities (NHPCO, n.d.a) 1 out of 4 dying Americans is a Veteran (NHPCO, n.d.b) WWII Veterans: 430 dying each day (National WWII Museum, 2016) 19,000 inpatient deaths per year in VA hospitals and Community Living Centers

Facts about Veteran Deaths and Palliative Care in the VA (continued) 40,000 palliative care consults per year 8,000 receive home hospice via contracts (VHA, 2008) Palliative Care Consult Teams at each VAMC (n=139) Hospice-Veteran Partnerships (NHPCO, n.d.a) www.wehonorveterans.org

Exercise – Stop and Consider: Download and watch video at: www.va.gov/GERIATRICS/Guide/LongTermCare/Palliative_Care.asp#

Nurses Caring for Veterans Must Understand Their Unique Culture Enrolled Veterans: at-risk for unemployment, poverty and homelessness (JEC, 2015) Many live in rural settings (NHPCO, 2011 & 2014b) Military camaraderie and respect Culture of stoicism (Grassman, 2015)

Differences in Cause of Chronic Illness and Death by Wars World War II Korean War Vietnam Gulf War Operation Enduring Freedom/Operation Iraqi Freedom-now Operation New Dawn VA Veterans Health Concerns http://www.va.gov/oaa/pocketcard/unique.asp

Various Experiences Can Affect a Veteran’s Dying What branch of service? Enlisted? Drafted? Rank? Age? Combat and/or POW experience? PTSD (assess for social isolation, alcohol abuse, anxieties)? Stoicism NHPCO, n.d.b & n.d.c.

Dying Concerns and Preferences of Americans Fears Preferences Family Considerations Military Experience

Barriers to Quality Care at End of Life Failure to acknowledge limits of medicine Lack of training Hospice/palliative care misunderstood Rules and regulations Death-denying society U.S. Grade of “B” in palliative care CAPC, 2015, Coyle, 2015

Hospice and Palliative Care Ideally begins at the time of diagnosis Can be used to complement medical treatments Occurs across all settings Hospice: Most intense form of palliative care Prognosis: < 6 months to live Patient agrees to enroll in hospice and chooses not to receive non-beneficial care NCP, 2013

Both Hospice and Palliative Care Interdisciplinary care Pain and symptom management Physical, psychological, social and spiritual care Role of the nurse: empathy, unconditional positive regard, genuineness, attention to detail (Berry & Griffie, 2015)

Hospice Care in America 2014 6,100 hospice programs 1.6 to 1.7m patients received hospice care Ethnicity: 92.9% Non-Hispanic/Latino origin Location of hospice patients at death: 58.9% in patient’s place of residence, 31.8% hospice inpatient, 9.3% acute care Age: 83.9% of patients age 65 and older Days on hospice care: median 17.4 days, mean 71.3 Diagnosis: 36.6% cancer, 63.4%, non cancer NHPCO, 2015

Eligibility for VA Hospice Benefit Included in the Medical Benefits Package (both inpatient or home settings) Eligible for both VA and Medicare may elect to have hospice paid for by either benefit VHA, 2005

Hospice Care for Veterans Hospice care provided at home Inpatient care provided (VHA, 2005) VA contracts with Community Nursing Homes (CNH) VA may purchase inpatient hospice care from a community provider Concurrent palliative and hospice care among Veterans with cancer beneficial (Mor et al., 2016) Growing need for hospice care within VA (Frahm, Barnett & Brown, 2011)

Prognostication May be used to establish goals of care Survival predictors Palliative Performance Scale Tools (e.g., Karnofsky, ECOG) are poor predictors of survival Biological markers Clinician predictors Estimating Prognosis (VHA, 2005) Lynn, 2008; Quill, 2014; Weissman, 2015

Palliative Care NQF, 2006

Two Palliative Care Frameworks for Guiding Care Making and Keeping Promises: Begin by envisioning what a better care system would look like (Lynn, 2000) Quality of Life Model: Identify physical, psychological, social, and spiritual aspects of care (Ferrell et al., 1991)

Making and Keeping Promises: Changing Systems of Care Good Medical Treatment Never Overwhelmed by Symptoms Continuity, Coordination, & Comprehensiveness Well Prepared, No Surprises Customized Care, Reflecting Your Preferences Consideration for Patient and Family Resources Make the Best of Every Day Lynn et al., 2000

Quality of Life Model: Addressing Four Dimensions of Care Ferrell et al., 1991; Chovan et al., 2015

History of Palliative Care in VA 1992: Policy - “All Veterans should be provided access to a hospice program…” 1998-2000: VA Faculty Leaders Project for Improved Care at End of Life 2001: Training and Program Assessment for Palliative Care (TAPC) 2001-2003: TAPC launches VA Hospice and Palliative Care Initiative (VAHPC); VAHPC Launches Hospice-Veteran Partnership (HVP) NHPCO, 2011

History of Palliative Care in VA (continued) 2003-Present: Palliative Care Consultative Team (PCCT); Accelerated Administration & Clinical Training (AACT) 2009- Comprehensive End of Life Care Initiative (CELC): GEC Veteran Experience Center GEC Implementation Center GEC Quality Improvement Resource Center

Palliative Care Progress at VA No Veteran Dies Alone Program (Chicago Tribune, 2016) Reduction in cost with improved satisfaction (Penrod et al., 2010) Shared Decision-Making and Advance Care Planning Worksheets VA Goals of Care Conversation Training Supportive care of families (Williams et al., 2011 & 2012-2013) Improvement in nurse work environment and staffing contributes to quality of care Partnership with National Hospice and Palliative Care Organization - We Honor Veterans

Role of the Nurse: Improving Palliative Care for All Patients Nurses spend more time at the bedside than other healthcare providers Some things cannot be “fixed” Therapeutic presence and “being with” First and foremost: Patient/family goals of care

Maintaining Hope in the Face of Death Unique Opportunity Excellent physical, spiritual care Maintain hope Processes Experiential Spiritual Relational Special consideration for Veterans Cotter & Foxwell, 2015 ; Grassman, 2015

Extending Palliative Care Across the Continuum of Care Nurses are the constant caregivers across settings Expand the concept of healing Become well-educated Be willing to be a “change agent” Coyle, 2015; Malloy, 2015

Summary Quality palliative care addresses quality of life Palliative care and hospice models of care support the patient and family Role of the nurse Collaborative interdisciplinary care is essential Many valuable resources for Veterans (NHPCO, n.d.d.; www.WeHonorVeterans.org)

Consider… What steps do you need to take to improve palliative care at your institution so that you and other members of the team are prepared to meet the needs of seriously ill Veterans and their families?