Palliative Care Across the

Continuum of Illness:
An Introduction to Palliative Care

Melissa Schepp, MD
Director, Palliative Care
St. Joseph’s Hospital, Atlanta GA
LEARNING OBJECTIVES

 Identify the principles of Palliative

Care
 Understand how Palliative Care
applies across the spectrum of
illness
Definition of Palliative Care
(National Quality Forum)

 Palliative Care refers to patient- and family-

centered care that optimizes quality-of-life
by anticipating, preventing, and treating
suffering.
 Palliative care throughout the continuum of
illness involves addressing physical,
intellectual, emotional, social, and spiritual
needs and facilitating patient autonomy,
access to information, and choice
Palliative care comes
from the word
“palliate”, which
means to ease.
What Is Palliative Care?
 Specialty (ABMS 2008)
 Addresses quality of life for seriously ill
patients and their families
 Covers a spectrum of care which
encompasses
 Multiple disciplines (MD, Nurse, Chaplain, SW)
 Alleviation of symptoms
 Assistance with information sharing/decision
making
 Coordination of resources
 OLD VS NEW APPROACH

Medicare
Life Prolonging Care Hospice Old
Benefit

Disease Progression

Life Prolonging New

Hospice Care
Care
Palliative Care

Diagnosis of serious illness Death

PALLIATIVE CARE VS HOSPICE

All of hospice
is palliative
care, but not Palliative
all of Care

palliative
Hospice
care is
hospice
Palliative Care, Why?

#1 Reason
Medical Progress…

…has changed the way we live

…has changed the way we are sick
…has changed the way we die
 Cancer Trajectory, Diagnosis to Death

High Cancer
Function

Low death

Time
 Organ System Failure Trajectory
High
Function

Low death

Time
 High
Function Dementia/Frailty Trajectory

Low death

Time
Modern End of Life=Protracted
Course

 85% of people in the US will

experience one of these trajectories at
the “end of life”
 20% Cancer
 25% Organ Failure
 40% Dementia/Frailty
 Average American 2-4 years of
disability before death
CURRENT NEEDS OF SERIOUSLY
ILL PATIENTS and THEIR FAMILIES

 High degree of unmanaged or under-managed

symptoms in patients with chronic and/or
debilitating illnesses
 Poor to non-existent communication regarding
patient goals of care
 Lack of coordination with patient and family
preferences-need for advanced care planning
 International Comparison of Spending on Health,
1980–2006
Total expenditures on health Average spending on health
as percent of GDP per capita ($US PPP)
16 7000

Australia
14 Canada
6000 Denmark
France
Germany
12 Netherlands
5000 New Zealand
Sweden
10 Switzerland
United Kingdom
4000 United States
8

3000
6 Australia
Canada
Denmark
France 2000
4 Germany
Netherlands
New Zealand
Sweden 1000
2 Switzerland
United Kingdom
United States
0 0
1980 1984 1988 1992 1996 2000 2004 1980 1984 1988 1992 1996 2000 2004

Data: OECD Health Data 2008 (June 2008).

 Inpatient Hospital Spending per Capita
Adjusted for Differences in Cost of Living
$1,800
$1,636
$1,600

$1,400

$1,200
$1,069
$1,044 $1,043
$1,015
$1,000 $914 $914
$879

$800

$600

$400

$200

$0
a b b a
United France Germany Netherlands Australia OECD Canada Japan
States Median
a2003
b2002

Source: The Commonwealth Fund, calculated from OECD Health Data 2006.
 High Spending: Poor Outcomes
Mortality Amenable to Health Care
Deaths per 100,000 population*
150 1997/98 2002/03 134
130 128
116 115 113 115
109 106
99 97 97
100 88 89 89 88
81 84
76

103 103 104 110

50 90 93 96 101
80 82 82 84 84
71 71 74 74 77
65

0
th way

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Ca ly

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* Countries’ age-standardized death rates before age 75; including ischemic heart disease, diabetes, stroke, and bacterial infections.
Data: E. Nolte and C.M. McKee, "Measuring the Health of Nations: Updating an Earlier Analysis," Health Affairs Jan.-
Feb. 2008, 27(1):58-71 analysis of World Health Organization mortality files. 16
Source: Commonwealth Fund National Scorecard on U.S. Health System Performance, 2008.
FINANCIAL IMPACT OF
CURRENT MODEL OF CARE

 Major financial crisis

 Locally
 Nationally
WHAT SERIOUSLY ILL
PATIENTS WANT
 Appropriate treatment of pain and other symptoms
 Achieve a sense of control
 Communication regarding their care
 Coordinated care throughout the course of illness
 Avoid inappropriate prolongation of the dying
process
 Relieve burdens on family
 Strengthen relationships with loved ones
 Sense of safety in the healthy care system
Hospital-Based Palliative Care
Growth (2000-2009)

 658(24.5%) 168(63%)= 138%

(Hospitals over 50 beds)

 85% of hospitals with >300 beds

 More likely in not-for-profit hospitals

*Growth of Palliative Care in US Hospitals 2011Snapshot, CAPC

BENEFITS TO HOSPITALS
 Improved patient and family satisfaction
 Improved quality of care for patients and their
families
 Meets the needs of an aging population
 Assists in compliance with hospital care quality
(Joint Commission)
 Transition of patient to appropriate level of care-
often reducing length of stay, especially in the ICU
 Decreased hospital costs and resource utilization
 Improved staff satisfaction and retention
PALLIATIVE CARE (THIS IS THE
MESSAGE!)

 Improve Quality of Life (“It’s

about the living”)
 Goals of Care=Plan of Care
 Ensure patient’s treatments are goal-
directed
 NOT disease-directed
 NOT technology driven
DO NOT ALLOW YOUR AWE FOR TECHNOLOGY AND OUR
ABILITY TO KEEP A BODY FUNCTIONING BLUR YOUR
DEFINITION OF LIFE…….
THIS IS A SKILL…Let’s put
ourselves “out of business”

Palliative Care teams must provide

education and support to hospital staff
regarding
 symptom management
 communication issues
 ethical dilemmas
 family conference/goal setting
 resource utilization
TOOL #1
Maslow’s Hierarchy
 COMMON SYMPTOMS
ANXIETY/INSOMNIA
DYSPNEA

DEPRESSION

NAUSEA/DIARRHEA
FEAR/AGITATION

COUGH

FATIGUE/WEAKNESS
TOOL #2
Patient Centered Interview

 F = FEELINGS related to the illness, especially fears

 What are you most concerned about?
 Do you have any specific fears or worries right now?
 I imagine you have had many different feelings as you have coped with this illness.
 Sometimes people have fears that they keep to themselves and don’t tell their doctor.
 I = IDEAS and explanations of the cause of a symptom or illness
 What do you think might be going on?
 What do you think this pain means?
 Do you have ideas about what might have caused this illness?
 F = FUNCTIONING, the illness’ impact on daily life
 How has your illness affected you day to day?
 What have you had to give up because of your illness?
 What goals do you have now in your life? How has your illness affected your goals?
 How does this illness affect important people in your life?
 E = EXPECTATIONS of the doctor & the illness
 What do you expect or hope I can do for you today?
 Do you have expectations about how doctors can help?
 What do you hope this treatment will do for you?
 What are your expectations about what might happen with this illness?
 TOOL #3
Family Meeting
 Multidisciplinary
 Format (templates available CAPC)
 Team data demonstrates
 80% rate of multidisciplinary family conferences by
Day 2 of consult
 Tangible outcomes
 Treatment goals

 Resolution of conflicts

 Advance Directives

 Documented in the chart!

DIFFICULT DECISIONS
 Are we preserving life or prolonging death?
 When is chemo or radiation therapy palliative in nature
and when is it curative?
 PEG tube placement?
 Do I want to be a DNR-what is a DNR?
 IVF’s? Hemodialysis?
 What is “quality of life”?

Our job as palliative care providers is to gently help

patients reach conclusions that are in line with their
goals, then do our best to help them achieve those
goals.
 OLD VS NEW APPROACH

Medicare
Life Prolonging Care Hospice Old
Benefit

Disease Progression

Life Prolonging New

Hospice Care
Care
Palliative Care

Diagnosis of serious illness Death

“Concurrent Care”

 “Early Palliative Care of Patients with

Metastatic Non-Small-Cell Lung
Cancer” Temel, J, NEJM 363;8
 151 patients with new diagnosis
metastatic NSC Lung Cancer
 Randomized to Onc Care OR Onc
Care + Palliative Care
Results

 Onc + Palliative Care group

 Reported better QOL
 Less depression
 Chose less “aggressive” care at EOL
 Lived Longer (11.6 months vs. 8.9
months)
“Non-hospice” Palliative Care
 Allocate resources by need, not prognosis
(hospice)
 Inpatient (ICU!! IPAL-ICU)
 Outpatient Palliative Care Programs
 Hospital-Based
 Hospice/HH Based
 Long-term Care Facilities
 25% of Americans die in NH
 By 2030 NH population expected to double from
1.5 million to 3 million
“When a patient is severely ill, he is often
treated like a person with no right to an
opinion. It is often someone else who makes
the decision if and when and where a patient
should be hospitalized. It would take so little to
remember that the sick person too has
feelings, has wishes and opinions, and has-
most important of all-the right to be heard.”
Elisabeth Kubler-Ross, MD
Recommended Reading
 “Living Long in Fragile Health: The New
Demographics Shape End of Life Care”, Joanne
Lynn, MD (Hastings Center Report)
 “Letting Go. What Should Medicine Do When it
Can Not Save Your Life?”, Atul Gawande (New
Yorker Article)
 “Handbook for Mortals”, Joanne Lynn, MD
 “Hard Choices for Loving People” Hank Dunn
(Patient-Friendly Pamphlet)
 “Palliative Care; Transforming the Care of
Serious Illness”, Diane Meier, et al
Other Resources
 Center to Advance Palliative Care
(capc.org)
 American Academy of Hospice and
Palliative Medicine (AAHPM.org)
 Education in Palliative and End of Life
Education (www.epec.net)
 ELNEC (www.aacn.nche.edu/elnec)
 EPERC (www.eperc.mcw.edu)
 Fast Facts
REFERENCES
Kubler-Ross, E. (1969). On death and dying. New York, NY:
Scribner.

Center to Advance Palliative Care (CAPC). (2008). Palliative care and hospice
care across the continuum. http://www.capc.org/palliative-care-across-
the-continuum.

End-of-Life Nursing Education Consortium (ELNEC) (2007). Promoting

palliative care nursing. ELNEC-Core Training Program. City of Hope and
American Association of Colleges of Nursing.

National Consensus Project (NCP) for Quality Palliative Care (2004). National
consensus project for quality palliative care: Clinical practice guidelines
for quality palliative care, executive summary. Journal of Palliative
Medicine, 7(5), 611-627.

National Quality Forum. (2006). A national

framework and preferred practices for palliative and hospice care: A
consensus report. Washington DC.
Questions?