DIFFERENCES BETWEEN PALLIATIVE AND HOSPICE CARE

Transcription

1 DIFFERENCES BETWEEN PALLIATIVE AND HOSPICE CARE Delia Cortez, LCSW Palliative Care Social Worker Santa Monica-UCLA Medical Center and Orthopaedic Hospital Santa Monica, CA

2 OBJECTIVES AT THE END OF THIS PRESENTATION THE PARTICIPANT WILL BE ABLE TO: State the differences between the palliative care and hospice models Discuss indications, treatments and limitations offered within each division of care

3 HISTORICAL OVERVIEW OF HOSPICE AND PALLIATIVE CARE: UNDERSTANDING WHAT WE KNOW TODAY Evolving in Europe since the 11th Century Hospitality, both for the guests and hosts. Referred to a place of shelter and rest for weary or ill travelers on a long journey. Crusader Movement 14th Century the first Hospice was open by the order of Knights Hospitallar of St. John of Jerusalem in Rhodes Flourished during the middle ages however began to languish in large part to the dispersing of religious orders. During the 17th Century hospice foundational principles and concepts delivered and began to flourish again Daughters of Charity of Saint Vincent de Paul in France 1843 Jeanne Garnier founded the hospice of L Association des Dames du Calvaire

4 HISTORICAL OVERVIEW OF HOSPICE AND PALLIATIVE CARE: UNDERSTANDING WHAT WE KNOW TODAY 19th Century London Lancet and the British Medical Journal Opening of Friedenhein in London for patients dying of Tuberculosis By 1905 four hospices were established Australia 1879 Home of Incurables in Adelaide 1902 the Home of Peace and The Anglican house of Peace for the Dying in Sydney United States 1899 St. Rose s Hospice by the Servants for Relief of Incurable Cancer This expanded to six locations in other cities. Ireland 1879 Our Lady s Hospice in Harold s Cross, Dublin Ireland International expansion to Australia, New South Wales and London

5 HISTORICAL OVERVIEW OF HOSPICE AND PALLIATIVE CARE: UNDERSTANDING WHAT WE KNOW TODAY Dame Cicely Saunders British registered nurse and physician Introduced the concept of total pain to refer to psychosocial, spiritual and physical aspects. Explored a wide range of opioids for controlling physical pain while also including the needs of the patient s family United States Tour 1967 St. Christopher s Hospice Florence Wald 1971 Hospice, Inc.

6 HISTORICAL OVERVIEW OF HOSPICE AND PALLIATIVE CARE: UNDERSTANDING WHAT WE KNOW TODAY Elisabeth Kubler-Ross 1969 On Death and Dying Dr. Josefina Magno 1984 US National Hospice Organization held 1985 First United States hospital-based palliative care consult service was developed by the Wayne State University School of Medicine in 1985 at Detroit Receiving Hospital 1987 Declan Walsh MD starts the first comprehensive palliative care medical program Studies correlating improved quality of life among cancer patients that received palliative care interventions The Joint Commission began an Advanced Certification Program for Palliative Care that recognizes hospital inpatient programs.

7 HOSPICE CARE A program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness so patients can be as comfortable and alert as possible. It is usually given at home, but may also be given in a hospice center, hospital, or nursing home. -National Institutes Health

8 ASPECTS OF HOSPICE Is a model of care that involves: Quality compassionate care for people facing a life-limiting illness Specialized medical care Pain management Emotional and spiritual support tailored to the patient s needs and instructions These services are also extended to the family/support system Team Includes: Physician Nurse NP Chaplain Social Worker Caregivers Nursing assistants

9 INDICATIONS FOR HOSPICE CARE Certified as being terminally ill by a physician Carries a prognosis of six months or less if the disease runs its normal course Common Admitting Diagnosis Cancer Non-Cancer Diagnosis Dementia Lung Disease

10 WHO BENEFITS FROM HOSPICE CARE? In 2014 it was estimated million patients received hospice care Recipients by Age: 53.7% were women 45.3% were men 84% were 65 years of age or older 41% were 85 years of age or older Less than 1% of the pediatric and young adult population

11 WHO BENEFITS FROM HOSPICE CARE? Recipients by Ethnicity 92.9% Non-Latino or Latino Origin 7.1% Latino or Latino Origin Recipients by Race 76% Caucasian 13.1% Other 7.6% African-American 3.1% Asian, Hawaiian, Other Pacific Islander 0.3% American Indian or Alaskan Native

12 WHERE HOSPICE IS DELIVERED Home, as defined by the patient (58.9%) Private Residence (35.7%) Skilled Nursing Facility (14.5%) Residential Facilities(8.7%) Hospice Inpatient Facility (31.8%) Acute Care Hospital (9.3%)

13 HOSPICE LEVELS OF CARE Home-based care Care is administered at the patient s usual residence Routine Home Care Continuous Home Care Inpatient Care General Inpatient Care (GIP) Inpatient Respite Care

14 HOW IS HOSPICE PAID FOR? Medicare, Medicaid and most private insurances 1982 Medicare hospice benefit enacted by Congress As of 2014: 85.5% Medicare 6.9% Managed Care or Private Insurance 5.0% Medicaid Hospice Benefit 0.7% Uncompensated or Charity Care 0.8% Self Pay 1.2% Other Payment source Approximately 93% of hospice agencies are certified by the Centers for Medicare and Medicaid Services (CMS) As of 2014 there were 4,100 certified hospice agencies

15 HOLD ON A MINUTE THAT SOUNDED A LOT LIKE PALLIATIVE CARE WHAT IS THE DIFFERENCE?

16 ARE THEY NOT THE SAME?? There are similarities as all hospice patients receive palliative care. The BIG differences are: The patient does not have to be at the end of his/her life in order to receive palliative care Hospice care focuses on the patient s last few months of life To qualify for hospice the patient must no longer be receiving curative treatments Palliative Care is in provided in conjunction to primary care Copyright 2014 American Medical Association. All rights reserved.

17 WHAT IS PALLIATIVE CARE? An approach that improves the quality of life of patients and their families facing the problem associated with lifethreatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. -World Health Organization 17

18 PALLIATIVE CARE NIH Palliative Care is comprehensive treatment of the discomfort, symptoms, and stress of a serious illness. It does not replace your primary treatment; palliative care works together with the primary treatment you are receiving. The goal is to prevent and ease suffering and include the patient s quality of life. -National Institute of Health 18

19 GOALS OF PALLIATIVE CARE Provide relief from pain and other distressing symptoms Affirms life and regards dying as a normal process Intends to neither hasten or postpone death Integrates the psychosocial and spiritual aspects of patient care Offers a supportive system to help patients live as actively as possible until death Offers a support system to help the family cope during the patients illness and their own bereavement Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated Will improve quality of life, and may also positively impact the course of illness Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy -World Health Organization

20 REASONS FOR PALLIATIVE CARE You would not be surprised if the patient died within the following year. Goals of care clarification and proper documentation No history of advance care planning conversations or document completion Frequent hospitalizations Admissions from extended care facilities (ECF) Complex management of physical and/or psychological symptoms Complex care requirements Functional decline, feeding issues, unplanned weight loss Cognitively impaired, elderly patient with an acute hip fracture Metastatic and or advanced incurable cancer

21 PROVIDING PALLIATIVE CARE Settings Acute care setting (hospitals, inpatient) Bridge programs Home ECF Common Diagnosis Cardiovascular Diseases Cancer Chronic Respiratory Disease AIDS Diabetes Mellitus

22 FUNDING FOR PALLIATIVE CARE United States Philanthropy Fee-for-service Direct Hospital support Home health as well as hospice agencies may provide bridge services until the patient meets hospice criteria Global funding United Kingdom Australia Africa

23 PALLIATIVE CARE AND HOSPICE FOR CHILDREN Palliative Care for children represents a special, albeit closely related field to adult Palliative Care. Palliative Care for children is defined as the active total care of the child s body, mind and spirit, and also involves giving support to the family. Hospice care is end-of-life care provided by health professionals and volunteers. Medical, psychological and spiritual support are provided. The goal of the care is to help these that are dying have peace, comfort and dignity. The caregivers try to control pain and other symptoms in order for the person to remain as alert and comfortable as possible. These services are also extended and inclusive of the family system. -World Health Organization

24 ASPECTS AND GOALS OF PALLIATIVE CARE AND HOSPICE FOR CHILDREN It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child s physical, psychological, and social distress Effective palliative care requires broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited It can be provided in tertiary care facilities, in community health centers and even the child s home -World Health Organization 24

25 ASPECTS AND GOALS OF PALLIATIVE CARE AND HOSPICE FOR CHILDREN Being patient centered and family engaged Respecting and partnering with patients and families Pursuing care that is high quality, readily accessible and reasonable Providing care across the age spectrum and life span, integrated into the continuum of care Ensuring that all clinicians can deliver basic palliative care and consult with appropriate specialist in a timely manner Improving care through research and quality improvement efforts

26 SPECIAL CONSIDERATIONS Range in age from prenatal through young adulthood May be 21+ years of age depending on the medical needs that are best treated by pediatric specialized services Wide range of diagnosis and disease trajectories that are potentially complicated by developmental needs of the patient

27 SPECIAL CONSIDERATIONS ( CONTINUED) Course of illness Effective pain/symptom management interventions Clinical models of care delivery Funding Mechanisms Ethical Concerns Family structure, dynamics

28 CHILDREN AND PALLIATIVE CARE Common Diagnosis Among all infants Congenital Malformations/Chromosomal Abnormalities Disorders related to short gestational period and/or low birth weight Maternal Complications Among all Children 1-19 years of age with complex chronic conditions Malignancy Neuromuscular Cardiovascular

29 MODELS OF CARE Hospital based programs Pediatric hospice based programs Hospice based programs Community agency or long term facility based program

30 FUNDING FOR PEDIATRIC PALLIATIVE AND HOSPICE CARE Highly complex 2010 Patient Protection and Affordable Act Private Insurance California Children Services (CCS)

31 PALLIATIVE CARE AND HOSPICE: AROUND THE WORLD An estimated 40 million people are in need of palliative care every year 78% live in low- and middle-income countries About 14% of people who need palliative care currently receive it worldwide Stringent regulations for morphine and other necessary controlled palliative medicine deny access to adequate pain relief and palliative care. Lack of training and awareness among healthcare professionals The global need for palliative care will continue to increase as a result of the growing burden of non-communicable diseases and aging populations.

32 FUTURE DIRECTIONS FOR HOSPICE AND PALLIATIVE CARE Increase research and awareness Human rights issue Funding and reimbursement Adequate guidance analysis Leadership and accountability

33 THANK YOU!

34 ORGANIZATIONS AND RESOURCES World Health Organization National Institutes of Health National Hospice and Palliative Care Organization Coalition for Compassionate Care of California Worldwide Palliative Care Alliance The Center to Advance Palliative Care African Palliative Care Association American Hospice Foundation ehospice European Association for Palliative Care

35 REFERENCES WHO Definition of Palliative Care. Available at Definition of hospice. MedlinePlus. Accessed November 2013 at: The Medicare Hospice Benefit. Available at October NHPCO s Facts and Figures: Hospice Care in America. Available at Retrieved March NHPCO s Facts and Figures Pediatric Palliative & Hospice Care in America. Available at Retrieved March David Clark, PHD (July-August 2000). Total Pain: The Work of Cicely Saunders and the Hospice Movement. APS Bulletin. Global Atlas of Palliative Care at the End Of Life Worldwide Palliative Care Alliance. Retrieved Bernice, Catherine Harper (2011). Social Work and Palliative Care-The Early History. Oxford Textbook of Palliative Social Work. Oxford University Press. Orloff, Stacy F. (2011). Pediatric Hospice and Palliative Care: The Invaluable Role of Social Work. Oxford Textbook of Palliative Social Work. Oxford University Press. Stark, Doretta (2011). Teamwork in Palliative Car: An Integrative Approach. Oxford Textbook of Palliative Social Work. Oxford University Press. Harrington Jacobs, Hollye (2011). Pediatric Palliative Care Ethics and Decision Making. Oxford Textbook of Palliative Social Work. Oxford University Press.