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Palliative Care Continuum

Palliative Care Continuum. Carri Siedlik - APRN, ACHPN Nurse Practitioner Advanced Certified Hospice and Palliative Nurse Palliative Care Program The Nebraska Medical Center. Death and Dying in America. Unprecedented number of older Americans with chronic illness

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Palliative Care Continuum

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

  2. Death and Dying in America • Unprecedented number of older Americans with chronic illness • Technology is prolonging life but not restoring it • Exploding healthcare costs • Many uninsured • Lack of control over rising drug/device costs • Failure to treat pain and other symptoms 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. What Constitutes Good Quality Care At the End of Life? • 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. Grant & Dy, 2012; Jacobsen et al., 2011

  5. Current Early 1900s Medicine's Focus Comfort Cure Cause of Death Infectious Diseases Chronic Illnesses Communicable Diseases Death rate 1720 per 100,000 800.8 per 100, 000 (1900) (2004) Average Life 50 77.8 Expectancy Site of Death Home Institutions Caregiver Family Strangers/ Health Care Providers Disease/Dying Relatively Short Prolonged Trajectory Cause of Death Demographic and Social Trends Administration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009

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

  7. Illness/Dying TrajectoriesSteady Decline, Short Terminal Phase Health Status Death Time Field & Cassel, 1997

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

  9. Toll of Death and Dying on Patients & Families/Caregivers • 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) Egan-City & Labayak, 2010; Given et al., 2012

  10. Overview of Caregivers: Their Commitment and The Cost • 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 Meier, 2010

  11. Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA Facilities • US Veterans: 23,442,000 • 900 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

  12. Changes Must Be Made: Development of Standards to Guide Practice • 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

  13. NCP and NQF: 8 Domains of Palliative 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 • Structure and processes of care • Physical aspects of care • Psychosocial/psychiatric aspects of care • Social aspects of care

  14. Report to Congress: National Strategy For Quality Improvement in Healthcare • 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 http://www.healthcare.gov/news/reports/quality03212011a.html

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

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

  17. Definition History What is Palliative Care?

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

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

  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 chooses to receive hospice care rather than curative treatments for his/her illness • The patient enrolls in a Medicare-approved hospice program http://www.nhpco.org

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

  22. Stop and Consider 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

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

  24. Quality-of-Life Model 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 http://prc.coh.org

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

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

  27. Prognostication • Consists of 2 parts: – foreseeing (estimating prognosis) – foretelling (discussing prognosis) • 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. Stop and Consider: Prognostication • 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?

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

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

  31. Final Thoughts….. • Quality palliative care addresses quality-of-life concerns • Increased nursing knowledge is essential • “Being with” • Importance 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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