Download Module 11 - IPCRC.NET: Welcome to IPCRC.NET

The
EPEC-O
TM
Education in Palliative and End-of-life Care - Oncology
Project
The EPEC-O Curriculum is produced by the EPECTM Project with major funding
provided by NCI, with supplemental funding provided by the Lance Armstrong
Foundation.
E
P
E
C
EPEC - Oncology
Education in Palliative and End-of-life Care - Oncology
O
Plenary 1
Gaps in Oncology
Overall message
Gaps between current and desired
practice need to be filled so that
palliative care becomes an essential
and inextricable part of
comprehensive cancer care
Objectives

Describe the current cancer
incidence, prevalence and mortality

Describe suffering associated with
cancer

Define palliative care

Identify gaps in cancer care

Introduce the EPEC-O curriculum
Video
U.S. incidence of cancer

2.4 m / year diagnosed with cancer
1 m skin and in situ cancers

1.3 m ‘serious’ cancers
2/3 cured (mostly surgically)
1/3 eventually die
U.S. prevalence of cancer

9.8 m alive with cancer in 2001
Breast 22 %
Prostate 17%
Colorectal 11%
Gynecologic 10%
Lung 4%
Overall U.S. cancer
mortality

In 2002 557,271 died of cancer

22.8% of all cause deaths
Patient / family transitions
Symptoms, suffering . . .

Multiple physical symptoms
Inpatients with cancer averaged 13.5
symptoms, outpatients 9.7
Related to
Cancer
Adverse effects of medications, therapy
Intercurrent illness
Portenoy RK, et al. Qual Life Res. 1994.
. . . Symptoms, suffering . . .

Multiple physical symptoms

Representative sample patients at
home (n = 998)
Dyspnea 71%
Pain 50%
Incontinence 36%
Emanuel EJ, et al, N Engl J Med. 1999.
. . . Symptoms, suffering

Psychological distress
anxiety, depression, worry, fear,
sadness, hopelessness, etc.
40% worry about “being a burden”
Covinsky KE, et al, JAMA. 1994.
Social isolation

Americans live alone, in couples
Working, frail or ill

Other family
Live far away
Have lives of their own

Friends have other obligations,
priorities
Caregiving

90% of Americans believe it is a
family responsibility

In population-based survey
87% needed caregiving
96% provided by family (72% women)
35% intermittent professional home care
15% paid for some help privately
Emanuel EJ, et al. Ann Int Med. 2000.
Financial pressures

20% of family members quit work to
provide care

Financial devastation
31% lost family savings
40% of families became impoverished
SUPPORT. JAMA. 1995.
Coping strategies

Vary from person to person

May become destructive
Suicidal ideation
Premature death by PAS or euthanasia
Place of care . . .

Patients want to be at home

Death in institutions
1949 - 50% of deaths
1958 – 61%
1980 to present – 74%
57% hospitals, 17% nursing homes, 20%
home, 6% other (1992)
Institute of Medicine. 1997.
. . . Place of care

Majority of institutional admissions
could be avoided

Generalized lack of familiarity with
how to address suffering and quality
of life issues
Gaps

Large gap between reality, desire
Fears
Desires

Pain & Suffering

Be comfortable

Be a burden


Loss of control
Family able to
cope

Sense of control

Die at home

Die in institution
Public expectations

AMA Public Opinion Poll on Health
Care Issues, 1997
“Do you feel your doctor is open and able to
help you discuss and plan for care in case
of life-threatening illness?”
Yes 74%
No 14%
Don’t know 12%
Patient expectations

Population-based survey of patients
at home

98% confidence in their physicians
No differences between managed are
and fee-for-service
Slutsman J, et al. JAGS. 2003.
Palliative care

Treatment to relieve pain and
suffering.

May be combined with therapies
aimed at remitting or curing cancer,
or it may be the total focus of care.
Conventional cancer care
Anti-neoplastic tTherapy
Presentation
Medicare
Hospice
Benefit
6m Death
Bereavement
Care
Comprehensive cancer care
Anti-neoplastic Therapy
Palliative Care
Presentation
Symptom Rx
Relieve Suffering
6m Death
Bereavement
Care
1998 ASCO survey

6,645 oncologists surveyed

118 questions

n = 3227 (48% response rate)

No significant differences in
answers based on oncology
specialty
Source of information about
palliative care

90% Trial and Error

73% Colleagues and role models

38% Traumatic Experience

Message: No one is teaching this to
oncologists
Inadequate education about
palliative care

81% inadequate mentor or coaching
in how to discuss poor prognosis

65% inadequate information about
controlling symptoms
At least some influence

97% Oncologists reluctant to ‘give up’

99% Patient / family demands for
antineoplastic therapy

80% Chemotherapy is reimbursable

80% Reluctance to talk about issues
other than antineoplastic therapy

91% Takes more time to do palliative
care than give antineoplastic therapy
Personal failure

76% feel some sense of personal
failure if patient dies of cancer

90% feel at least some anxiety
discussing poor prognosis

75% feel at least some anxiety
discussing symptom control with
patients and families
Unrealistic expectations

29% Patient

50% Family

27% Conflict
Professional satisfaction

98% some emotional satisfaction to
provide palliative care

92% some intellectual satisfaction to
provide palliative care

Marked contrast with preparation and
a cause for optimism
Goals of EPEC-O

Practicing oncologists

Core clinical skills

Improve
competence, confidence
patient - physician relationships
Patient / family satisfaction
physician satisfaction

Not intended to make every
oncologist a palliative care expert
EPEC-O curriculum . . .

Whole patient assessment

Communication of diagnosis and
prognosis

Goals of care, treatment priorities

Advance care planning
. . . EPEC-O curriculum . . .

Symptom management

Preventing Burnout

Cancer Survivorship

Physician-assisted suicide /
euthanasia
. . . EPEC-O curriculum . . .

Withholding and withdrawing Rx
Hydration and Nutrition

Care in the last hours of life

Grief and bereavement support
. . . EPEC-O curriculum . . .

How to teach

Models of palliative care

Next steps to improve palliative care
care in cancer

Interdisciplinary teamwork
. . . EPEC-O curriculum

Apply each skill in your practice

Eenhance professional satisfaction

Foster creative approaches to create
change in cancer care
Change will not be effective without
oncologists
E
P
E
C
O
Summary
Gaps need to be filled so that
palliative care becomes an
essential and inextricable part
of comprehensive cancer care