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Palliative Care Continuum Carri Siedlik - APRN, ACHPN Nurse Practitioner Advanced Certified Hospice and Palliative Nurse Palliative Care Program The Nebraska.

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Presentation on theme: "Palliative Care Continuum Carri Siedlik - APRN, ACHPN Nurse Practitioner Advanced Certified Hospice and Palliative Nurse Palliative Care Program The Nebraska."— Presentation transcript:

1 Palliative Care Continuum Carri Siedlik - APRN, ACHPN Nurse Practitioner Advanced Certified Hospice and Palliative Nurse Palliative Care Program The Nebraska Medical Center

2 Unprecedented number of older Americans with chronic illnessUnprecedented number of older Americans with chronic illness Technology is prolonging life but not restoring itTechnology is prolonging life but not restoring it Exploding healthcare costsExploding healthcare costs Many uninsuredMany uninsured Lack of control over rising drug/device costsLack of control over rising drug/device costs Failure to treat pain and other symptomsFailure to treat pain and other symptoms Death and Dying in America Meier, 2010

3 View of Advanced Illness and the Care that is Involved Frequent emergency room visits Increase of in-patient admissions Futile care Promote suffering Increase risk of depression and anxiety Promote complicated bereavement for family members/caregivers Treatments continued near death may prevent/delay hospice services Greer et al., 2012

4 For Healthcare Team: Providing symptom management and discussing emotional aspects of the disease. For Patients: Achieving a sense of control, attaining spiritual peace, succeeding in having finances in order, strengthening relationships with loved ones, believing their life had meaning. What Constitutes Good Quality Care At the End of Life? Grant & Dy, 2012; Jacobsen et al., 2011

5 Adm inistration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009 Early 1900s Current Medicine's Focus ComfortCure Cause of Death Infectious Diseases Communicable Diseases Chronic Illnesses Death rate 1720 per 100,000 (1900) per 100, 000 (2004) Average Life Expectancy Site of Death HomeInstitutions Caregiver FamilyStrangers/ Health Care Providers Disease/Dying Trajectory Relatively ShortProlonged Cause of Death Demographic and Social Trends

6 Death Time Health Status < 10% (MI, accident, etc.) Field & Cassel, 1997 Illness/Dying Trajectories Sudden Death, Unexpected Cause

7 Death Time Health Status Field & Cassel, 1997 I llness/Dying Trajectories Steady Decline, Short Terminal Phase

8 Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health Status Time Crises Death Decline Field & Cassel, 1997

9 Patients fear they will be a physical and financial burden If “nothing more can be done,” will healthcare providers abandon them? How do families and caregivers adjust to role changes? Many drain life savings and/or go bankrupt to cover medical costs Older adults may be cared for by an aged spouse who is also ill Older children caring for a parent may also have acute or chronic illness(es) Toll of Death and Dying on Patients & Families/Caregivers Egan-City & Labayak, 2010; Given et al., 2012

10 Over 44 million adults provide unpaid care to sick/disabled adults Average of 21 hours a week ~ 33% are elderly Most are women in their mid 40’s, working full-time 40% of women and 26% of men caregivers report emotional strain Cost of uncompensated care = $257 B/year Overview of Caregivers: Their Commitment and The Cost Meier, 2010

11 US Veterans: 23,442, WW II Veterans die a day Veteran deaths account for almost 28% of all US deaths Nearly 40% of enrolled Veterans live in rural communities 121,000 Veterans are without shelter or healthcare, hence no access to hospice or palliative care Casarett 2008, NHPCO, 2011 Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA Facilities

12 National Consensus Project (NCP) for Quality Palliative Care: Promotes evidence-based practices to optimize palliative care programs National Quality Forum: Developed quantifiable quality indicators The Joint Commission: Advanced Certification in Palliative Care Changes Must Be Made: Development of Standards to Guide Practice

13 Structure and processes of care Physical aspects of care Psychosocial/psychiatric aspects of care Social aspects of care Cultural aspects of care Spiritual, religious, and existential aspects of care Care of the imminently dying patient Ethical and legal aspects of care NCP, 2013 NCP and NQF: 8 Domains of Palliative Care

14 Palliative care compliments national aim to improve quality of care at the local/state/national level – Better Care: Must be patient- centered, reliable, accessible, safe – Affordable Care: Reduce cost for individuals, families, employers, government 011a.html Report to Congress: National Strategy For Quality Improvement in Healthcare

15 Barriers to Quality Care at the End of Life Failure to acknowledge the limits of medicine Failure to acknowledge the limits of medicine Lack of training for healthcare providers Lack of training for healthcare providers Hospice/palliative care services are poorly understood Hospice/palliative care services are poorly understood Rules and regulations Rules and regulations Denial of death Denial of death Meir, 2010; NHPCO, 2011

16 What is Hospice? Definition Definition History History Services included Services included Statistics Statistics

17 What is Palliative Care? Definition Definition History History

18 Curative Treatment Palliative Care Hospice Current Practice of Hospice and Palliative Care

19 Disease-Modifying Treatment Hospice Care Bereavement Support Palliative Care Terminal Phase of Illness Death Continuum of Care

20 Hospice Medicare Benefit Eligibility Criteria: The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal course The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal course The patient chooses to receive hospice care rather than curative treatments for his/her illness The patient chooses to receive hospice care rather than curative treatments for his/her illness The patient enrolls in a Medicare-approved hospice program The patient enrolls in a Medicare-approved hospice program

21 Hospice: – Medicare – Medicaid – Most private health insurers Palliative Care: – Philanthropy – Fee-for-service – Direct hospital support Payment for Hospice and Palliative Care

22 Which of the following patients could benefit from palliative care? A. 64 year-old with congestive heart failure, hypertension and diabetes B. 32 year-old with acute myelogenous leukemia C. 57-year-old with newly diagnosed amyotrophic lateral sclerosis D. 76 year-old with Parkinson’s disease Stop and Consider

23 Let’s Practice: A Case Study 70 y/o woman with newly diagnosed pancreatic cancer.70 y/o woman with newly diagnosed pancreatic cancer. Live alone. Retired school teacher.Live alone. Retired school teacher. Only Son lives in another stateOnly Son lives in another state

24 Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Quality-of-Life Model

25 Maintaining Hope in the Midst of Death Experiential processes Experiential processes Spiritual processes Spiritual processes Relational processes Relational processes Rational thought processes Rational thought processes Remember the caregiver Remember the caregiver Ersek & Cotter, 2010

26 Tools and Resources for Palliative Care Assessment Tools Physical symptoms Physical symptoms Emotional symptoms Emotional symptoms Spirituality Spirituality Quality of life Quality of life Caregivers outcomes Caregivers outcomeshttp://prc.coh.org

27 Prognostication Consists of 2 parts: Consists of 2 parts: – foreseeing (estimating prognosis) – foreseeing (estimating prognosis) – foretelling (discussing prognosis) – foretelling (discussing prognosis) Performance status Performance status – Karnofsky – ECOG poor predictors, multiple symptoms, biological markers (e.g. albumin) – “Would I be surprised if this patient died in the next 6 months?” Hui, 2012

28 Kay, a 68-year-old woman with heart failure Kay, a 68-year-old woman with heart failure – Dyspnea at rest – On ACE inhibitors and beta blockers – Ejection fraction (EF) < 20% – Syncope – Resistant ventricular or supraventricular arrhythmias Would she qualify for hospice care, given these symptoms? Would she qualify for hospice care, given these symptoms? Stop and Consider: Prognostication

29 Some things cannot be “fixed” Some things cannot be “fixed” Use of therapeutic presence Use of therapeutic presence Maintaining a realistic perspective Maintaining a realistic perspective Role of the Nurse in Improving Palliative Care

30 Extending Palliative Care Across Settings Nurses as the constant Nurses as the constant Expanding the concept of healing Expanding the concept of healing Becoming educated (Certification, HPNA) Becoming educated (Certification, HPNA)

31 Final Thoughts….. Quality palliative care addresses quality-of-life concernsQuality palliative care addresses quality-of-life concerns Increased nursing knowledge is essentialIncreased nursing knowledge is essential “Being with”“Being with” Importance of interdisciplinary approach to careImportance of interdisciplinary approach to care

32 “… touching the dying, the poor, the lonely, and the unwanted according to the grace we have received, and let us not be ashamed or slow to do the humble work.” -Mother Teresa

33 To Comfort Always


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