HOSPICE 101. Back to the Future: Palliative Care in the 21 st Century

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+ HOSPICE 101 Back to the Future: Palliative Care in the 21 st Century

+ Dame Cicely Saunders: Founder of Hospice- 1967 I didn t set out to change the world, I set out to do something about pain. It wasn t long before I realized that pain wasn t only physical, but it was psychological and spiritual -Dame Cicely Saunders

+ Dame Cicely Saunders: Founder of 3 Hospice- 1967 The name was first applied to specialized care for dying patients which began in England during the 1960 s Saunders began her work with the terminally ill in 1948 and created the first modern hospice St. Christopher s Hospice in a residential suburb of London Saunders introduced the idea of specialized care for the dying to the US during a 1963 visit with Yale University

+ Dame Cicely Saunders: Founder of 4 Hospice- 1967 Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care This lecture launched the following chain of events, which resulted in the development of hospice care as we know it today

+ History of Hospice 1963 Dr. Saunders introduced the idea of specialized care for the dying to the United States. 1965 Florence Wald, then Dean of the Yale School of Nursing, invites Saunders to become a visiting faculty member of the school. 1967 The first modern hospice, St. Christopher s was founded in England. 1969 Elizabeth Kubler-Ross, wrote On Death and Dying and gave impetus to the movement in the U.S. 1974 The first hospice in the United States began in New Haven, Connecticut. 1983 Medicare began offering a hospice benefit. 1986 Hospice benefit offered to terminally ill patients in Nursing Homes.

+ Hospice Philosophy Hospice focuses on caring, not curing Hospice neither hastens nor postpones death Patient and family are the unit of care Care is holistic Hospice affirms life

+ End of Life Care in the Past Prior to antibiotics, people died quickly from infectious disease or accidents Medical care was focused on caring, and comfort The sick were cared for at the home with cultural variations and preferences People saw death as a normal part of life- a transition from this life to the next

+ Medicine s Shift in Focus With improved sanitation, public health, antibiotics and other new therapies, life expectancy greatly increased In 2012, the average American lived 78.8 years With modern medicine and health care, only some illnesses can be completely cured Because of modern advances in technology and medicine, individuals can live much longer and more comfortably with chronic illness

A Century of Change 1900 2012 AGE AT DEATH - 46 Years - 78.8 Years CAUSES - Infection - Accident - Childbirth - Cancer - Heart Disease - Chronic Lower - Respiratory Disease - Stroke DISABILITY - Not much - Median >4 years before death FINANCING - Private, modest - Public and substantial - 84.1% in Medicare - (2012) 1,971,260= Total Medicare Beneficiaries in OH - (2012) 49,435,610= Total US Medicare Beneficiaries ~1,151,358 Total Persons Served with Hospice Services - 5.2% Medicaid

Function + Short-Term Predictions are Difficult Physicians tend to underestimate (by months) survival for heart and lung disease We tend to overestimate (by weeks to months) for cancer Best Trajectory for Dying of Lung Cancer or CHF Lung Cancer Congestive Heart Failure Worst death Time

+ Inflated Expectations? Statistics on survival following successful resuscitation after cardiac arrest: 85% according to the lay public 67% on television 30% overall 0-5% in the elderly, debilitated, chronically ill

+ Shift in Focus... Shift in location of dying had an impact on the nature of dying Increased focus on science, technology, and curative treatment Marked shift in values Our society became death denying Increased value on productivity, youth, and independence Fragmentation of care Minimal psychosocial and spiritual support for patients

+ Perverse Incentives: How we finance health care We like things that are NEW A 2% increase in survival with a 2000% increase in cost is all that s needed for a new treatment to become the standard of care We like PROCEDURES Much, much easier to get a hip replacement or bypass then to get someone to help Mrs. Brown with a bath

+ The Tradeoff... No money left for basic care Home care Aides Simple medicines to provide comfort Simple equipment in the home Our medical-industrial complex is much more in love with high tech solutions and not necessarily what is best for the patient

+ Poor Communication about Death & Dying We do not share our fear and desires with our loved ones or our doctors We have no real agenda for discussion Advance directives are inadequate in Ohio

+ Consequences of Denial & Poor Communication Lost opportunities: Goodbyes Reconciliation Affairs not in order Spiritual reconciliation Inappropriate care Spiritual concerns are not addressed

Hospice Death + Current: Cure vs. Care Model Aggressive Medical Care Time

Hospice Bereavement + Proposed: Integrated Model Death Curative Care Palliative Care Time

+ End-stage chronically ill patients do NOT need intensive care

+ they need intensive caring

+ So, What is Hospice? Hospice care is a type of palliative medicine. It is a concept of care, not a place A system of care for terminally ill patients who meet Medicare s criteria of a six-month or less (approximate) prognosis. Care is holistic and is delivered by an interdisciplinary team that are available 24 hours a day.

+ So, What is Hospice? 22 Provides compassion and support to patients and their loved ones both during the illness and following the death. Do not prolong suffering or hasten the end of life. Focuses on living life to its fullest in the patient s final days.

+ What is Palliative Care? Palliative medicine focuses on care, NOT cure Beneficial for any patient at any stage of an advanced illness and can be provided simultaneously with other treatments. Provides relief from pain and other symptoms. Uses a team approach which integrates the psychological and spiritual aspects of patient care with medical treatment.

+ What is Palliative Care? 24 Palliative care is available for any patient who needs and desires it at any course in their illness Offers a support system to help patients live as actively as possible for as long as possible. Enhances the quality of life for both patients and their families.

Palliative Care VS. Hospice PALLIATIVE CARE HOSPICE PLACE -Hospital -Extended Care Facility (ECF) -Home -Home (>90%) TIMING -No time restrictions -Within 6 months of death PAYMENT TREATMENT -Regular medical insurance -Specialist visit -Comfort-oriented -Curative treatment allowed -Medicare Hospice Benefit 100% Covered -Private Insurance varies -Comfort-oriented -Curative treatment NOT allowed

+ In simpler terms, remember All Hospice is Palliative Care Palliative Care But Not all Palliative Care is Hospice Hospice

+ Did you Know In 2011, an estimated 1.65 million patients received services from Hospice In 2011, the National Hospice and Palliative Care Organization estimated that approximately 44.6% of all deaths in the US were under the care of a hospice program Mean survival was 29 days longer for hospice patients than non-hospice patients 2,513,000 U.S. Deaths 1,059,000 Hospice Deaths

+ Did You Know 90% of Americans, wish to die in the comfort of their own home In 2011, 66.4% of patients died in their home 18.3% in Nursing Homes 26.1% in Hospice Inpatient Facilities 7.4% in Acute Care Hospitals More than half of hospice patients are female 56.4% of Female Patients in 2011 43.6% of Male Patients in 2011 In 2011, 83.3% of Hospice patients were 65 years of age or older More than 1/3 of all hospice patients were 85 years of age or older

+ Did You Know When Hospice care is the U.S. was established in the 1970 s, cancer patients made up the majority of hospice patients Today, cancer diagnoses account for less than ½ of all hospice patients, 37.7% The top 4 non-cancer primary diagnoses for patients admitted to Hospice in 2011 were: 13.9% Debility Unspecified 12.5% Dementia 11.4% Heart Disease 8.5% Lung Disease

+ Medicare Hospice Benefit In 2011, 84.1% of Hospice patients are covered by the Medicare Hospice Benefit 7.7% Managed Care or Private Insurance 5.2% Medicaid Hospice Benefit 1.1% Self Pay Patient may revoke the benefit at any time May resume at any time with recertification Currently recertified regularly while on the benefit Most private insurances now offer some form of Hospice Benefit

+ Medicare Hospice Benefit: Levels of Care Routine Home Care per day reimbursement rate for following: Home visits by RNs, social workers, spiritual care coordinators, hospice aides and volunteers Medications specifically identified in the Plan of Care as being related to the Palliation and management of symptoms related to the patients terminal illness Durable Medical Equipment and supplies Physical Therapy, Nutritional Therapy, Speech Therapy, Occupational Therapy, Massage Therapy

+ Medicare Hospice Benefit: Levels of 32 Care Respite Care- For up to 5 days at a time in an in-patient unit or ECF Continuous Home Care- Crisis management of acute symptoms; a minimum of 8 hours of nursing care in the home each day General Inpatient Care- Pain and symptom management in an inpatient hospice or in contracted hospital beds

+ Clerical Workers Volunteers Nurses Massage Therapists Medicare Hospice Benefit: Summa at Home Interdisciplinary Team (IDT) Psychologists Hospice Aides Therapists: PT, OT, ST, RT Patient & Family Bereavement Services Social Workers Physicians: Hospice & Patient Personal Spiritual Care Coordinators

+ Hospice Admission Diagnoses Cancer Cardiovascular Diseases Congestive Heart Failure Chronic Obstructive Pulmonary Disease (COPD) Renal Disease Dementia or Alzheimer s Disease Neurological Disease (Parkinson s ALS, etc.) Acquired Immune Deficiency Syndrome (AIDS) Liver Disease

+ History: Summa at Home Hospice In October, 1998 program development started. In July, 1999, the program was Medicare-certified and JCAHO-accredited In December 2002, Summa s Palliative Care Consult Service was established. In August, 2006, new Acute Palliative Care Unit at Akron City Hospital opened In 2010, Summa s Palliative Care and Hospice Services received the American Hospital Association s prestigious Circle of Life Citation of Honor Award Hospice of Summa is under the umbrella of Summa s Palliative Care and Hospice Services In October, 2012, new Acute Palliative Care Unit at Barberton Hospital opened 2013, Hospice of Summa joined with Home Care and Home Care Infusion to become Summa at Home Hospice and Palliative Care

+ Summa at Home Hospice: Vision & Values Vision To be the premiere regional provider of Palliative Care & Hospice Services Values Uncompromising, interdisciplinary, team-based, quality care is provided to our patients and those who love and care for them. Supportive services are delivered through cost-effective means promoting comfort, dignity and the opportunity to live each day to the fullest. Education and support are provided to team members and other professionals in recognition of the challenging and unique nature of this work.

+ Acute Palliative Care Unit (APCU) 12 Bed Inpatient Unit- Akron City Hospital and 8 Bed Inpatient Unit- Barberton Hospital: Rooms all private 24-hr visitation Family rooms Kitchen and shower for family Patients Served: Patients with progressive neurologic, renal, cardiac, respiratory and oncologic illness Actively dying patients Hospice in-patients for pain and symptom management

+ Volunteer Involvement in Hospice Volunteers and Hospice Medicare Conditions of Participation: Under Medicare Hospice law, Conditions of Participation (COP) Regulation 418.70, 5% of total patient care hours must be provided by volunteers Early hospice efforts were almost entirely from a voluntary source and the writers of the Medicare regulations realized the importance of the volunteer role in providing quality hospice care

+ Volunteer Involvement in Hospice 39 The U.S. Hospice movement was founded by volunteers and there is continued commitment to volunteer service NHPCO estimated that in 2011, 450,000 Hospice volunteers provided 21 million hours of service In 2011, 60.0% of volunteers were assisting with direct support Hospice volunteers provide service in three general areas: Spending time with patients and families (Direct) Providing clerical and other services that support patient care and clinical services (Clinical) Helping with fundraising efforts and/or the board of directors (General)

+ One Final Note You matter because you are you. You matter to the last moment of your 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 (1918-2005)