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

Hospice Case Study  Mr. H is a 77 y/o male with history of Stage 4 NSCLC. He was initially diagnosed June 2011, after he presented with a persistent cough for 2 months. He has been treated with palliative chemotherapy and radiation. He presents to clinic with worsening SOB and fatigue. CT scan shows progression of disease in lung and liver. After discussing test results, 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 ?”

Hospice Case Study  As Mr. H’s health provider, you have seen the progression of his symptoms/disease.  You clarify with Mr. H his “goals of care”  Given his choice to stop aggressive treatment of his cancer, you suggest hospice care as a good option.  Mrs. H asks “What is hospice?”

What is your understanding of hospice?

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

General Principles of Hospice  Philosophy of care, not a place  Focus on compassionate, holistic end-of-life care.  Care is directed by the patient and family with full patient autonomy and decision-making  Dignity/Respect are maintained for patient and family

History of the Hospice Movement  Evolving since the 11 th century; “Hospice “ was an old European term for a house of comfort for tired or sick travelers.  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.  In 1974; the first hospice in America, “Connecticut Hospice”, followed shortly by an in-patient hospice at Yale Medical Center.  In 1978; the U.S. Department of Health, Education and Welfare published a report citing hospice as a viable concept of care for terminally ill people.  In 1982; the Medicare Hospice Benefit was passed in Congress.

Hospice Q&A Mr. H asks you “What services will hospice provide me in my home?” NursingHomemaker PhysicianTrained volunteers Social WorkerRespite Spiritual SupportBereavement Support Physical, Occupational, and Speech Therapy Complementary Alternative Medicine

Hospice Q&A Mr. H asks :  “Will I still be able to see my doctor?”  “ I am on Medicare, will hospice services be covered?”  “ Will I be able to stay at home?”  “ My friend told me you have to be a DNR to enroll in hospice, is that true?

U. S. Hospice facts in 2010  46.1% male, 53.9% female  83% of those dying under hospice care are >65 yrs. of age (1/3 >85yrs. of age)  Median length of stay : 19.7 days, Average length of service: 67.4 days (1/3 pts. enrolled die or are discharged in 7 days or less)  Place of Death: 66.7% place of residence 41.1% private residences 18.0% nursing homes 7.3% residential facility 21.9% hospice in-patient 11.4% acute care hospital

U.S. Hospice facts in 2010 Racial Differences: White 77.3% Multiracial (including Hispanic) 11.0% Black/African American 8.9% Other 2.8%

Hospice Admissions by Diagnosis in 2010  Cancer 35.6%  Non-Cancer 64.4% Heart Disease 14.3% Dementia 13.0% Debility (FTT) 13.0% Lung Disease 8.3% Other 4.2%

Commercialization of Hospice ?? U. S. Hospice Facts in 2010: For-profit hospice 58% Not-for-profit hospice 36% Government owned hospice 6%

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.

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

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?”

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

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

Reimbursement  Medicaid  Private Insurance  Out of pocket  Grants  Not Medicare, per se is this true. I thought Pall Med physicians and APN’s can charge Medicare.

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

Outcome Measures “ I am packed up, prayed up, ready to go.” - Hospice patient