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?....