End-of-Life Care: It’s About Living, Not Dying Department of Health & Kinesiology – HLTH 335-500 Texas A&M University Craig Borchardt, Ph.D. President and CEO Assistant Chair Hospice Brazos Valley Dept. Humanities in Medicine TAMHSC-COM Clinical Excellence. Unwavering CompassionIn 2013 cared for 1066 patients Service area includes 17 counties (9000 square miles) - offices in Bryan, Brenham and La Grange Only hospice inpatient unit in service area Is the only community owned non-profit hospice in its service area Average patient length of stay is 55 days 2014 budget totals $9.2 million One of the largest rural hospices in TexasObjectives: At the end of this presentation you will be able to: • Articulate a basic understanding of palliative and hospice care and its place in today’s healthcare arena • Identify the myths about hospice care that are detrimental to the treatment of chronic and terminal illness • Articulate the role of hospice care in the treatment of patients who are chronically or terminally ill.So….let’s begin today’s educational journey in palliative care with a discussion on……….. Death & DyingThe word “death” is not pronounced in New York, in Paris, in London because it burns the lips. The Mexican, in contrast is familiar with death, jokes about it, caresses it, sleeps with it, celebrates it; is one of his favorite toys and his most steadfast loves. Octavio Paz - 1914-1998 - Mexican writer, poet & diplomat - Surrealist - Nobel Prize in LiteratureHas death been pushed to the fringes of the human experience?……..Is Western culture in denial???????What about medicine and death? Are those entrusted with the sacred traditions of Hippocrates, Osler, & Reed in denial? Has medicine and the US healthcare system pushed death to the fringe?Where to you want to die? 1. Home? 2. Hospital? 3. Assisted living facility? 4. Nursing home? 5. While on Facebook? 6. At your deer lease? 7. At Kyle FieldWhere Do People Die? • Hospital – 50% • Nursing Home – 30% • Home – 20% Where do People WANT to die? • Home 1st • Hospital 2nd • Nursing Home Never - End of Life/Palliative Education Resource Center (EPERC)If people wish to die at home, why do most die in the hospital? Forces exist in our health care delivery system together with the values related to health and illness, that propel the physician, patient, family towards aggressive, life prolonging care far longer than is medically appropriate; such care typically is provided in the hospital environment, up until shortly before death.1. Physician Forces (cont.) • Uninformed about prognostic factors • Uninformed about pain treatment – e.g. how to assess pain, use opioids • Poor or no training in end-of-life communication skills • Cultural insensitivity2. Patient and Family Forces • Difficulty accepting impending death – Expectation of miracles – Inability to “give up hope” – Fear of talking about death – Fear that “giving up” = personal weakness • Fear of the impact of a death at home • Failure to discuss advance care plans3. System Forces • Increased number of hospital beds correlates to increased hospital deaths. – “if you build it, they will come!” • Lack of organizational structure to support excellent end of life care in all care settings. • Financial disincentives exist that force care toward aggressive orientation.Most Significant Force? 1. Physician 2. Patient and Family 3. SystemDying is an expected life cycle event . . . • Dying is just one of the many expected normal life cycle events – Dying can be an opportunity for personal growth. – Dying can be an opportunity for family and community growth.But, is death a normal life cycle event? • Yes … – Normal in the very old; – Normal in patients who are chronically ill with declining function; • No … – Not normal in the young“If medicine takes aim at death prevention, rather than at health and relief of suffering, if it regards every death as premature, as a failure of today’s medicine- but avoidable by tomorrow’s (medicine), then it is tacitly asserting that it’s true goal is bodily immortality… Physicians should try to keep their eyes on the main business, restoring and correcting what can be corrected and restored, always acknowledging that death will and must come, that health is a mortal good, and that as embodied beings we are fragile beings that must stop sooner or later, medicine or no medicine.” Kass LR JAMA 1980• Intervention Timetable: 18 Source: Figure revised by T. Miller. Original figure from Mazanec, P. et al. (2009). A new model of palliative care for oncology patients with advanced disease: three generations of models of palliative care. Journal of Hospice & Palliative Nursing. Retrieved from http://www.medscape.com/viewarticle/712742_4 Disease-modifying Treatment Palliative Care Hospice Care Open-ended hospice care Terminal Phase Bereavement Support Chronic disease management Inpat ient Death Disease-specific models of hospice care (e.g., oncology, CHF, Alzheimer’s, COPD, AIDS/HIV, liver disease, MS, ALS)Palliative care is ………………………. “…treatment that enhances comfort and improves the quality of the patient’s life. No specific treatment is excluded from con-sideration. The test of palliative treatment lies in the agreement by the patient, the physician, the primary caregiver, and the medical team that the expected outcome is relief from distressing symptoms, easing of pain and the enhancement of quality of life. National Hospice OrganizationEnd-of-Life Care • Treats patients of all ages with life-limiting or terminal illness • Begins when the patient has decided not to have curative treatment or prolong life • Has as its goal comfort and enhancing the quality of remaining life • Typically has a pain management component • Is directed by the physician and the patient • Involves a primary care-giverWhy end-of-life care is important • By 2030 20% of the U.S. population will be over 65 yrs of age. • Eventually most adults will have one or more chronic illnesses, living with the illness for years before they die. • 95% of Medicare expenses occur in the last six months of a patient’s life. • In the US in 2013, an estimated 45% of all deaths were hospice patients. •