CCEENNLLEE End-of-Life Nursing Education Consortium Module 1: Nursing Care at the End of Life

EELLNNEECC AgendaAgenda Review changes in how we age and dieReview changes in how we age and die Hospice and palliative care – definitionsHospice and palliative care – definitions Nursing homes and EOL careNursing homes and EOL care Overview of death and dying in the VAOverview of death and dying in the VA Nurses’ role in EOL careNurses’ role in EOL care Review changes in how we age and dieReview changes in how we age and die Hospice and palliative care – definitionsHospice and palliative care – definitions Nursing homes and EOL careNursing homes and EOL care Overview of death and dying in the VAOverview of death and dying in the VA Nurses’ role in EOL careNurses’ role in EOL care

EELLNNEECC Late 1800’sLate 1800’s Early to mid 1900’sEarly to mid 1900’s Late 1800’sLate 1800’s Early to mid 1900’sEarly to mid 1900’s The Need for Improved Care at the End of Life

EELLNNEECC Cause of Death/Demographic and Social Trends

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EELLNNEECC Fantasy Death Where are you?Where are you? Who, if anybody is with you?Who, if anybody is with you? What is important to you?What is important to you? Where are you?Where are you? Who, if anybody is with you?Who, if anybody is with you? What is important to you?What is important to you? What is missing from this picture?

EELLNNEECC Sudden death, unexpected cause < 10 % (e.g. MI, accident) Health Status Time

EELLNNEECC Steady decline, short terminal phase Health Status Time Decline

EELLNNEECC Slow decline, periodic crises, sudden death Health Status Time CrisesDeath Decline

EELLNNEECC Death and Dying in America (cont.) Disparity between the way people die/the way they want to dieDisparity between the way people die/the way they want to die Patient/family perspective Patient/family perspective Disparity between the way people die/the way they want to dieDisparity between the way people die/the way they want to die Patient/family perspective Patient/family perspective

EELLNNEECC Curative and Palliative Approaches to Care Curative/DiseaseFocus Diagnosis of disease & related symptoms Curing of disease Treatment of disease Alleviation of symptomsCurative/DiseaseFocus Diagnosis of disease & related symptoms Curing of disease Treatment of disease Alleviation of symptomsPalliativeFocus Pt/family identify unique end-of-life goals Assess how symptoms, issues are helping/ hindering reaching goals Interventions to assist in reaching end-of-life goals Quality of life closure

EELLNNEECC Principles of Hospice and Palliative Care HospiceHospice Palliative CarePalliative Care HospiceHospice Palliative CarePalliative Care

EELLNNEECC Philosophy and Principles of Hospice and Palliative Care Philosophy of carePhilosophy of care Goals of careGoals of care

EELLNNEECC Palliative Care Curative Focus: Disease-specific Treatments Palliative Focus: Comfort/Supportive Treatments Bereavement Support

EELLNNEECC General Principles of Palliative Care Patient and family as unit of carePatient and family as unit of care Attention to physical, psychological, social and spiritual needsAttention to physical, psychological, social and spiritual needs Interdisciplinary team approachInterdisciplinary team approach

EELLNNEECC General Principles (cont.) Education and support of patient and familyEducation and support of patient and family Extends across illnesses and settingsExtends across illnesses and settings Bereavement SupportBereavement Support

EELLNNEECC Model of Quality of Life Physical Well BeingPhysical Well Being Psychological Well BeingPsychological Well Being Social Well BeingSocial Well Being Spiritual Well BeingSpiritual Well Being

EELLNNEECC Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation PainPsychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function AppearanceSpiritual Hope Suffering Meaning of Pain Religiosity Transcendence Adapted from Ferrell, et al. 1991

EELLNNEECC 1.6 million live in US nursing homes 1.6 million live in US nursing homes 17,000 long term care facilities. 17,000 long term care facilities. 90% of these people are over the age of 65 90% of these people are over the age of million NH residents projected by million NH residents projected by 2030 References: National Center for Health Statistics, Highlights of Trends in the Health of Older Americans: United States, 1994, 1997 USA Today pg B1, Thurs, Sept 30, 1999 Graying of America -- Longterm care

EELLNNEECC 1.3 million nurses aides $6.94 per hour -- average wage 93% annualized turnover The Hazards of Elder Care; Overexertion, Assault Put Aides at High Risk for Injury by Lorraine Adams in the Washington Post October 31, 1999 Caregiving in America

EELLNNEECC Nursing Homes in California Number of nursing homes and nursing home beds shrinking over last 10 yearsNumber of nursing homes and nursing home beds shrinking over last 10 years 33% of nursing homes now operating at a loss33% of nursing homes now operating at a loss With cuts to MediCal and Medicare, unless something changes 97% will operate at a lossWith cuts to MediCal and Medicare, unless something changes 97% will operate at a loss Number of nursing homes and nursing home beds shrinking over last 10 yearsNumber of nursing homes and nursing home beds shrinking over last 10 years 33% of nursing homes now operating at a loss33% of nursing homes now operating at a loss With cuts to MediCal and Medicare, unless something changes 97% will operate at a lossWith cuts to MediCal and Medicare, unless something changes 97% will operate at a loss Something has to give… California Healthcare Foundation 7/03

EELLNNEECC Veteran Deaths – Basic Facts 29% of Americans dying each year are veterans29% of Americans dying each year are veterans The majority of dying veterans are not enrolled for by care by VAThe majority of dying veterans are not enrolled for by care by VA A majority of enrolled veterans do not die in VA facilitiesA majority of enrolled veterans do not die in VA facilities A small shift of very sick and dying veterans not currently served by VA into the VA could swamp the systemA small shift of very sick and dying veterans not currently served by VA into the VA could swamp the system 29% of Americans dying each year are veterans29% of Americans dying each year are veterans The majority of dying veterans are not enrolled for by care by VAThe majority of dying veterans are not enrolled for by care by VA A majority of enrolled veterans do not die in VA facilitiesA majority of enrolled veterans do not die in VA facilities A small shift of very sick and dying veterans not currently served by VA into the VA could swamp the systemA small shift of very sick and dying veterans not currently served by VA into the VA could swamp the system

EELLNNEECC A small percentage of veterans die as inpatients in VA facilities Annual Veteran Deaths

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EELLNNEECC A Study of Death and Dying in VA James Breckenridge, PhD, James Hallenbeck, MD Co-Principal Investigators VA Palo Alto HCS Preliminary data – do not cite Funded by the Robert Wood Johnson Foundation

EELLNNEECC VA Terminal Admissions 79, 216 (53% ) died in an institutional setting at some time over three year period79, 216 (53% ) died in an institutional setting at some time over three year period 41% of VA acute care deaths in ICU as compared to 16.9% under Medicare…

EELLNNEECC Costs of Terminal Stays Annual direct cost of terminal admits: $387,367,000 67% of costs in acute care Annual direct cost of terminal admits: $387,367,000 67% of costs in acute care

EELLNNEECC Average Cost Per Day for Terminal Stays Direct DSS Cost

EELLNNEECC NH Terminal ICD9 Codes Diagnosis Freq %

EELLNNEECC VA Budget for EOL Care Of approximately $17,000,000,000 allocated per year by VHA for clinical care 10% 10% is for care in the last year of life is for care in the last year of life For 1.3% of enrolled veterans…

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EELLNNEECC Opportunities for Growth The last phase of life provides continued opportunities for positive growth in the face of suffering

EELLNNEECC Extending Palliative Care Across Settings Nurses as the constantNurses as the constant Expanding the concept of healingExpanding the concept of healing Role of the nurseRole of the nurse Nurses as the constantNurses as the constant Expanding the concept of healingExpanding the concept of healing Role of the nurseRole of the nurse

EELLNNEECC Nurses’ Role in EOL Care Nurse = “nurture” a good fit for EOL careNurse = “nurture” a good fit for EOL care Like other disciplines, necessary knowledge and skills for EOL care neglected in traditional trainingLike other disciplines, necessary knowledge and skills for EOL care neglected in traditional training Great job satisfaction possibleGreat job satisfaction possible Nurse = “nurture” a good fit for EOL careNurse = “nurture” a good fit for EOL care Like other disciplines, necessary knowledge and skills for EOL care neglected in traditional trainingLike other disciplines, necessary knowledge and skills for EOL care neglected in traditional training Great job satisfaction possibleGreat job satisfaction possible

EELLNNEECC Conclusion Quality end of life care addresses Quality of Life concernsQuality end of life care addresses Quality of Life concerns Increased Nursing knowledge is essentialIncreased Nursing knowledge is essential Nursing homes becoming the major venue for EOL care in USNursing homes becoming the major venue for EOL care in US

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