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 Hospice Brazos Valley Clinical Excellence Unwavering Compassion Assistant Chair Dept Humanities in Medicine TAMHSC COM In 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 One of the largest rural hospices in Texas 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 Objectives 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 Dying The 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 Literature Has 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 2 3 4 5 6 7 Home Hospital Assisted living facility Nursing home While on Facebook At your deer lease At Kyle Field Where 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 insensitivity 2 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 plans 3 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 System Dying 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 Open ended hospice care Disease modifying Treatment Death Hospice Care Chronic disease management Palliative Care Disease specific models of hospice care e g oncology CHF Alzheimer s COPD AIDS HIV liver disease MS ALS I n p a t i e n t Bereavement Support Terminal Phase 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 18 Palliative care is treatment that enhances comfort and improves the quality of the patient s life No specific treatment is excluded from consideration 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 Organization End 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 giver Why 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 In the US in 2013 an estimated 1 65 million patients received hospice services From the Centers for Disease Control and Prevention and the National Hospice and Palliative Care Organization End of life care includes treatment via Palliative Care Hospice Care Hospice care is palliative care provided for people who do not wish to seek curative treatment and have a prognosis of 6 months or less to live Compassionate Model of Care Focus on the Whole Person Physical Emotional Social Spiritual Hospice care is provided by a team which includes the patient a primary caregiver and specially trained