1. Hospice Basics and Benefits

2. Goal  To educate nurses and other health care professionals about hospice basics and the benefits for the patient and family.

3. Objectives  Describe the history/philosophy of hospice  List two or more criteria used to identify the hospice appropriate patient and some common diseases seen in end-of-life care  Identify difference between curative and palliative care  Explain Medicare Reimbursement for hospice  Discuss the relevance of advance directives and DNR when discussing hospice services

4. All of Us Will Die  <10% suddenly, unexpected event, heart attach (MI), accident, etc…  >90% protracted life-threatening illness Predictable steady decline with a relatively short “terminal” phase (cancer). Slow decline punctuated by periodic crises (CHF, emphysema, Alzheimer’s)

5. Dying in the 19th Century  3% of America’s population was >65  Life expectancy was 45-50 years  Most people died at home

6. Dying in the United States Today  13% of the population is > 65 years  Approximately 75% of Americans die in health care facilities 57% die in hospitals 17% die in long term care facilities

7. Care at the End-of-Life  Q: Where would you prefer to receive medical care if you were terminally ill with a prognosis of 6 months or less?  A:9 out of 10 respondents cite their home as the preferred site of care.

8. History of Hospice  Linguistic root words Hospital Hospitality Shelter Respite Caring  A place of refuge and solace

9. Hospice History: U.K.  1905 St. Joseph’s Sisters of Charity in London  1967 St. Christopher’s in London  “You matter because you are you. You matter to the last moment of life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”  -Cicely Saunders

10. Hospice History: U.S.  1969 Elizabeth Kubler-Ross’ “On Death and Dying” Brought death and dying into mainstream  1974 New Haven Hospice of Connecticut  1976 VITAS beginnings  1978 National Hospice Organization National Hospice & Palliative Care Organization now Mission - to lead and mobilize social change for improved care at the end of life

11. VITAS’ Beginnings  Available for ALL in the location of their choice, 24 hours a day, 7 days a week, for whomever needs it regardless of race, religion, and/or inability to pay  clients and families can and will teach us what they need and determine their plan of care  The Interdisciplinary group provides care with the integration of medical, psychological and spiritual services  Staff efforts at the bedside should be supported and coming to work should be a rewarding experience

12. Oxford’s Textbook of Palliative Medicine What is Palliative Care? “The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is quality of life.”

13. World Health Organization Palliative Care...  Affirms life  Regards dying as a normal process  Neither hastens nor postpones death  Provides relief from pain and other symptoms  Integrates the psychological & spiritual aspects of care  Provides support for patient and family

14. Curative vs. Palliative Care  Curative Disease driven Doctor in charge Disease process is primary Few choices  Palliative Symptom driven Patient is in charge Disease process is secondary to person Many choices Comfort & quality of life

15. Patient Appropriateness  Life-limiting illness  Medicare regulations Six months or less prognosis Two physicians  Patient and/or family request

16. Oncology (Cancer) Diagnoses  Breast CA  Bone CA  Renal Cell CA  Pancreatic CA  Bladder CA  Malignant Melanoma  Lung CA  Colon CA  Advanced Prostate CA with metastasis  Head & Neck CA

17. Non-Oncology Diagnoses  End Stage Cardiac Pulmonary Alzheimer’s Disease Renal Disease Liver Stroke (Acute & Chronic) ALS (Lou Gerhig’s disease)  Debility Unspecified  AIDS

18. Disease Progression  Change or decline in performance status  Loss of appetite  Excessive weight loss  Difficulty breathing  Pain

19. End of Life Symptoms  Unrelieved pain  Confusion  Restlessness  Weight loss  Shortness of breath  Disturbed bladder and bowel function  Disrupted sleep  Nausea and/or vomiting Pain and symptom management is the first priority!

20. End of Life Symptoms  Psychosocial Depression Anxiety Ineffective coping and communication Life role transition Caregiver distress  Spiritual Despair / hopelessness / isolation Powerlessness Loneliness Need for reconciliation

21. After the End-of-Life  Hospice provides care for the family after the patient dies via bereavement services  For at least one year following a death, hospice provides: Letters, cards Phone calls (visits) Bereavement support groups Annual memorial services Memory Bears

22. Hospice Interdisciplinary Team  Patient and Family  Attending Physician  Hospice Physician / Medical Director  Registered Nurse  Hospice Aide  Social Worker  Chaplain  Volunteer

23. Medicare Hospice Benefit  Passed by Congress in 1982  Covers 100% of costs related to the terminal diagnosis Includes HME Pharmacy  Unlimited benefit periods  Services are primarily reimbursed on a per diem basis

24. Medicare Covered Services  Skilled nursing services  Physician visits  Home health aide visits  Volunteer services  Medical social services  Spiritual counseling  Nutrition counseling  Bereavement support for family All services are provided based on the needs of the patient and family!

25. Four Levels of Hospice Care 1.Routine Home Care 2.Continuous Care 3.Inpatient Care 4.Respite Care

26. Ethical Issues  Ethics Committees  Advance Directives  Do Not Resuscitate Order (DNR)

27. Advance Directives  Includes living wills, durable power of attorney, and health care surrogacy  Define the medical care a patient wants or does not want to receive if they become terminally ill and are mentally or physically unable to communicate their wishes In 1990, Congress enacted the Patient Self Determination Act: all healthcare providers who receive Medicare and Medicaid funds must provide information regarding Advance Directives to patients admitted to their program

28. Hospice & Advance Directives  Patients do not have to have advance directives in order to receive hospice care  Hospice staff will discuss the importance of advance directives in preserving patient choice  Hospice offers training on advance directives Advance Directives Preserve Patient Choice!

29. Do Not Resuscitate Orders (DNR)  DNRs communicate a patient’s wishes regarding the use of cardio-pulmonary resuscitation  Patients are not required to sign a DNR in order to elect or receive hospice care

30. Partner with Hospice  Benefit from hospice’s rich history  Know criteria used to identify the hospice appropriate patient  Ask: could the patient’s quality of life be better served by palliative care vs. curative care?  Medicare Hospice Benefit covers 100% of the costs related to the terminal diagnosis  Hospice educates patients/families on advance directives and DNRs

31. “You matter because you are you. You matter to the last moment of life, and we will do all we can, not only to help you die peacefully, but also to live until you die. Dame Cicely Saunders St. Christopher’s Hospice, London, England

32. References Ferrell, B., & Coyle, N. (2008). The Nature of Suffering and the Goals of Nursing. Oxford: Oxford University Press. Ferrell, B., & Coyle, N. (Eds.). (2010). Textbook of Palliative Nursing (3rd ed.). Oxford: Oxford University Press. Kinzbrunner, B., & Policzer, J. (Eds.). (2011). End-of-Life Care A Practical Guide (2nd ed.). New York: McGraw Hill Medical Kuebler, K., Berry, P., & Heidrich, D. (2002). End-of-Life-Care Clinical Practice Guidelines. Philadelphia: Saunders. Matzo, M., & Sherman, D. (Eds.). (2001). Palliative Care Nursing Quality care to the end of life. New York: Springer Publishing Company. Office, E. P. (2010). End of Life Nursing Education Consortium. Paper presented at the ELNEC Train the Trainer, Washington DC. Organization, NHPCO. (2012). Hospice Information. Caring Connections Retrieved 01/03/2012, 2012, from http://www.nhpco.org/i4a/pages/index.cfm?pageID=3254 Puchalski, C., & Ferrell, B. (2010). Making Health Care Whole Integrating Spirituality into Patient Care. West Conshohocken, PA: Templeton Press.

33. Hospice Basics and Benefits