e p e c
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The Education in Palliative and End-of-life Care program at Northwestern University Feinberg School of Medicine, created with the support of the American Medical Association and the Robert Wood Johnson Foundation. E P E C. Plenary 1. Elements and Gaps in End-of-life Care. Objectives. - PowerPoint PPT PresentationTRANSCRIPT
EPEC
Elements and Gaps in End-of-life Care
Plenary 1
The Education in Palliative and End-of-life Care program at Northwestern University Feinberg School of Medicine, created with the support of the American Medical Association and the Robert Wood Johnson Foundation
Objectives Understand dying in America
What we wantWhat we getBarriers to care
Elements of careHospice carePalliative care Concepts of suffering
Introduce the EPEC Curriculum
How Americans diedin the past Early 1900s
average life expectancy 50 yearschildhood mortality highadults lived into their 60s
Prior to antibiotics, died quickly Medicine focused on caring,
comfort Sick cared for at home (cultural
variations)
Medicine’s shiftin focus ... Science & technology Marked shift in values & focus of
North American societyValues
productivity, youth, independenceDevalues
age, family, interdependent caring
… Medicine’s shiftin focus … Improved sanitation, public health,
antibiotics, other new therapies
Increased life expectancy1995 avg 76 y (F: 79 y; M: 73 y)2009 avg 78 y (F: 81 y; M: 76 y)
… Medicine’s shiftin focus
Potential of medical therapies“fight aggressively” against illness, death
prolong life at all cost
Death “the enemy”organizational promisessense of failure if patient not saved
Place of death 90% of respondents to the National
Hospice Organization Gallup survey wanted to die at home
Death in institutions1949 – 50% of deaths1958 – 61%2000 – 75%
50% in hospitals25% in nursing homes 25% home
Sudden death, unexpected cause < 10%, MI, accident, etc
Death
Time
Hea
lth
Sta
tus
Steady decline, short terminal phase
Slow decline, periodic crises, sudden death
… Barriers to end-of-life care Social factors
Lack of exposureFear, discomfortCulture of denial
Importance not recognizedTraining, fundingCoordination
Lack of skillDiscomfort managing complex issuesSymptomsCommunication
Delayed introduction of care Increasingly complex medical care
Role of hospice, palliative care ...
Hospice started in U.S. in late 1970’s
Percentage of total U.S. deaths in hospice
11% in 199317% in 199525% in 200039% in 2009
Continuum of care
Hospice
Disease-modifying therapy(curative, life prolonging, or
palliative in intent)
Bereavement care
Presentation/Diagnosis
Death
Illness
Bereavement
Hospice Benefit
Specialized services for the last 6 months of life
Focus on quality of life, symptom management
Includes care of the family before and after death
Includes medication, equipment, respite care
The Hospice Team
Chaplain Social worker Medical director Volunteers Nursing care CNA Bereavement counselor
Hospice levels of care
Routine care General inpatient care Continuous care Respite care
… Role of hospice, palliative care …
Median length of stay remains low36 days in 1995 (16% < 7 days LOS)
20 days in 199826 days in 2005 (30% < 7 days LOS)
The problem with hospice Misunderstood
By publicBy professionals
Negative associationsDeath/giving up
The 6 month rule Restrictions on expensive care
Advanced life prolonging therapies may also be palliative
People forced to choose between needed servicesCare and comfortBeneficial advanced therapies
The problem with hospice The 6 month rule Restrictions on expensive care
Advanced life prolonging therapies may also be palliative
People forced to choose between needed services
Care and comfortBeneficial advanced therapies
Reliance on family caregivers
Continuum of care
Hospice
Disease-modifying therapy(curative, life prolonging, or
palliative in intent)
Bereavement care
Symptom control,supportive care
Presentation/Diagnosis Death
Illness Bereavement
… Role of hospice, palliative care
Palliative care programs earlier symptom managementsupportive care expertisepossible impact on life expectancy
Specialty palliative care Primary palliative care
Palliative care – IOM
“Palliative care seeks to prevent, relieve, reduce, or soothe the symptoms of disease or disorder without effecting a cure… . Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs… .It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.”
- Institute of Medicine, 1998
Palliative care – CAPCPalliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness illness - whatever the diagnosis.
The goal is to improve quality of life for both the patient and the family.
Palliative care – CAPC
Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support.
Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Goals of EPEC Practicing clinicians Core clinical skills Improve
competence, confidencepatient-physician relationshipspatient / family satisfactionclinician satisfaction
Not intended to make every clinician a palliative care expert
EPEC Curriculum …
Whole patient assessment Communicating difficult news Goals of care Advance care planning
… EPEC Curriculum …
Symptom managementPain managementDepression, anxiety, deliriumOther physical symptoms
Psychosocial issues
EPEC Curriculum …
Medical futility Withholding, withdrawing life-
sustaining treatments Last hours of living
… EPEC Curriculum … Sudden illness Hastened death Legal issues Loss, grief and bereavement Cultural issues Family issues Depression and delirium Professional self care
… EPEC Curriculum …
Questions?....