Introduction to Hospice and Palliative Medicine

1. Introduction to Hospice and Palliative Medicine Bansari Patel, APN, ANP Joan Bigane, APN, FNP University of Chicago Medical Center

2. Case Study • Mr. H is a 77 y/o AAM with history of Stage 4 Non-small cell lung cancer. He was initially diagnosed August 2010, after he presented with a persistent cough for 2 months. He has been treated with chemotherapy and radiation. He presents to clinic with worsening SOB and fatigue. The imaging you ordered shows that he has progression of his disease in lung and liver. After reviewing this with him, you ask if he would like to pursue additional chemotherapy. • He responds: “I don’t want any more chemo, can’t you do anything else to make me feel better ?”

3. Case Study • As Mr. H’s health provider, you have seen the progression of his symptoms/disease and feel that he is appropriate for hospice level care and discuss that with Mr. H. • Mr. H asks “What exactly does hospice care mean?”

4. Hospice Experience Model • Physical Dimension (perceived distress/discomfort) • Functional Dimension (perceived ability to perform ADLs and IADLs) • Interpersonal Dimension (perceived quality of relationships) • Well-being Dimension (perceived sense of “dis-ease”) • Transcendent Dimension (perceived spiritual connection) Labyak M, Egan K, Brandt K. The experience model: Transforming the end-of-life experience. Hospice and Palliative Care insights 2002;2:9-14

5. General Principles of Hospice • Philosophy of care, not a place • Focus on compassionate, holistic end-of-life care • Patient still has autonomy and decision making • Care is directed by the patient and family • Dignity/Respect for patient and family

6. Hospice Q&A Mr. H asks you “What services will hospice provide me home?” Nursing PT/OT/ST Physician Trained volunteers Social Worker Respite Spiritual Support Bereavement Support Homemaker CAM

7. Hospice Q & A Mr. H asks : • “How long has hospice care been around?” • “Will I still be able to see my doctor?” • “Who pays for it?” • “Am I eligible under medicare?”

8. History of the Hospice Movement • Evolving since the 11th century • The hospice movement in the United States has its roots in the work of British physician Dame Cicely Saunders and Dr. Elisabeth Kubler-Ross. • In 1967:,Dr. Saunders founded the first modern hospice -- St. Christopher's Hospice in London, England. • The first hospice in America, the Connecticut Hospice, opened in 1974, followed shortly by an in-patient hospice at Yale Medical Center and a hospice program in Marin County, California • Four years later, the U.S. Department of Health, Education and Welfare published a report citing hospice as a viable concept of care for terminally ill people and their families that provides humane care at a reduced cost.

9. History of the Hospice Movement • Early 1980s, Congress created legislation establishing Medicare coverage for hospice care. The Medicare Hospice Benefit was made permanent in 1986. Today most states also provide hospice Medicaid coverage. • Today there are more than 3,200 hospices across the country - some are part of hospitals or health systems, others are independent; some are nonprofit agencies, others are for-profit companies • According to the National Hospice and Palliative Care Organization, in 2000 about 1 in 4 Americans who died received hospice care at the end of life - roughly 600,000 people.

10. How are hospice services covered? • Private Pay • Some insurances: BlueCross; Aetna; UCHP • Medicaid • Medicare Hospice Benefit

11. Case Study • Mrs. G is a 46 y/o woman w/ metastatic breast cancer to her spine. She is currently receiving chemotherapy and has completed radiation to her spine. She presents today with pain to her low back and anxiety. She currently is on long acting opioids and breakthrough opioids. She tells you that it’s not helping. You order imaging of her spine and increase her pain medications.

12. Case Study • The imaging shows stable metastatic disease. • You increase her opioids and bring up the idea of having a palliative medicine team consult.

13. Palliative Care Q & A Mrs. G asks you: • “What is Palliative Medicine? Is this something new?” • “What services are provided?” • “How much does it cost?” • “How often will I get a visit” • “Will I still be able to get my chemotherapy?” • “Does this mean I’m dying?”

14. Palliative Care Services • Treatment to relieve pain and other symptoms • Individual and Family counseling • Emotional and spiritual support, including attention to end-of-life concerns • Help in advance care planning • Assistance with treatment choices and decisions • Home visits (provided by outpatient-based Palliative Care teams) • Help in transitioning to hospice care

15. History of Palliative Care • First US hospital-based palliative care programs began in the late 1980’s • Cleveland Clinic & Medical College of WI. • Dramatic increase in hospital-based palliative care • Board certified specialty • More than 50 fellowship programs

16. Reimbursement • Medicaid • Private Insurance • Out of pocket • Grants • Not Medicare, per se

17. Benefits of Hospice/Palliative Care • Relieves pain and suffering • Helps with difficult decision making • Palliative care helps patients complete prescribed therapies • Boosts patient and family satisfaction • Continuity of care • Cost saving

18. Thought for the day: When I was 5 years old, my mom always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down “happy.” They told me I didn’t understand the assignment And I told them they didn’t understand life. -Anonymous