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Replication of a Home-Based
Palliative Care Program:
A Multi-site Study
Susan Enguidanos, PhD
Director, Research Center
Partners in Care Foundation
Assistant Professor
Davis School of Gerontology
University of Southern California
[email protected]
1
Goals of Discussion





Brief overview of End-of-Life Care
Introduction to Home-based
Palliative Care
Evidence of Effectiveness
Policy Implications
Next Steps
2
Definition of Terms
 Hospice: Medicare benefit for last 6
months of life for those with
terminal illness.

Palliative Care: pain and symptom
relief provided for those with serious
illness.
3
Challenges in Providing
End-of-Life Care



Fragmentation of care
Aging population
Costs of medical care
• 25% of Medicare revenue is spent on 5% who
die each year
• Average cost of care in last year of life is
$26,000 (1996 costs)
• Average cost of care in last 2 years $ 58,000
4
A dichotomous intent
Curative / life-prolonging therapy
Presentation
Death
Relieve suffering (hospice)
5
Barriers to Hospice



Systemic
Physician
Patient
6
Impact of Barriers

Patients are referred late to Hospice
• Median length of stay=22 days



Patients often die in pain
Patient EOL preferences are not
considered
Patients die in the hospital (60%)
7
Home Based Palliative Care Model




Bridge traditional medical care and
Hospice care
In home end-of-life care for patients
with one year life expectancy
Blended model of care
Shift focus of care from hospital to
home
8
Curative / remissive therapy
Presentation
Death
Palliative care
Hospice
9
Core Components
of Palliative Care





Interdisciplinary team
Physical, medical, psychological,
social & spiritual support
Care provided in home
Patient & family education &
training
Coordinated, patient-centered plan
of care
10
Core Components
of Palliative Care

Pain & symptom management
• comprehensive primary care to manage
underlying conditions
• aggressive treatment of acute exacerbation
per patient and family request



24 hour phone support, visits if
necessary
Volunteer & bereavement services
Transfer to hospice if appropriate
11
Palliative Care vs. Hospice



Physicians not required to give a 6
month prognosis
Patients do not have to forego
curative care
Palliative care physician coordinates
care to prevent service fragmentation
12
Progression of
In Home Palliative Care Model



Pilot study conducted in Kaiser
Permanente (KP) Southern California
in 1998
Comparison group study KP Southern
California in 1999
Won National KP Voh’s Award for
Quality in 2002
13
Project Overview
Funded by Garfield Memorial Fund



Randomized controlled trial in Kaiser
Permanente Colorado & Hawaii
(2002-2004)
Study period: 2 years (approximately
18 months of data collection)
310 patients recruited from 2 sites
• Colorado n=150, Hawaii n=160
14
Data Collection

Phone interviews at baseline and
every 30 days up to 120 days
• Functional status
• Satisfaction

At death or discharge from study
• Service utilization
• Medical care cost data
• Site of death
15
Garfield Multisite
Study Design
Measurement Intervals
Enrollment
30 Days
60 Days
90 Days
120 Days
Death or
End of Study
Study Groups
R
Intervention
Group
Comparison
Group
-Demographics
-PPS
-Satisfaction w/
Services
-PPS
-Satisfaction w/
Services
-PPS
-Satisfaction w/
Services
-PPS
-Satisfaction w/
Services
-Service
-PPS
Use
-Satisfaction w/
Services
16
Enrollment Criteria

KP Health Plan Member

Not receiving Hospice


Diagnosis of congestive heart failure (CHF), chronic
obstructive pulmonary disease (COPD), or cancer
1 or more emergency department/hospital visits in
12 months

Palliative Performance Scale 7 or less

Life expectancy about 1 year
• Primary care physician “would not be surprised” if the
patient died in the next year
17
Study Groups

Usual Care (UC)
• One visit by home health nurse to
assess for further need
• Access to all usual medical care services

Palliative Care (PC)
• Multiple home visits provided by
interdisciplinary palliative team
(physician, nurse, social worker, HHA,
volunteers, pastor on request)
• Access to all usual medical care services
18
718 Potential
Participants referred to
the study
Excluded (n=408):
199 Ineligible
67 Admitted to Hospice
59 Refused
35 Died
26 In other study
19 Other
Patient
Flowchart
310 Randomized
155 Assigned to Intervention:
2 Withdrew
8 died before receiving care
155 Assigned to Usual Care
3 withdrew
145 Included in Final Analysis
152 Included in Final Analysis
19
Demographics of
Study Participants

Mean Age 74 (sd=12)

•
•
•
•
•
• 77% of study participants
were over 65. The age
range spanned from 38101


51% Male
Primary Diagnosis
• 46.5% Cancer
• 32.7% CHF
• 20.8% COPD

Mean of 2.5 major medical
conditions (sd=1.4)
Marital Status

52.2% Married
29.3% Widowed
8.1% Single
6.7% Divorced
3.7% Unknown
Ethnicity
• 63% Caucasian
• 16% Asian/Pacific
Islanders
• 13% Hawaiian
• 5% Latino
• 2% African American
• 1% Other
20
Baseline Group Comparisons

No differences between study groups at
enrollment in terms of:
• Demographics: ethnicity, age, gender,
marital status, income level
• Palliative Performance Scale


Palliative Care more satisfied with
services at baseline
Usual Care had significantly more days
on service before death
21
Baseline Variables
P
Usual Care
(n=153)
Intervention
(n=145)
Female, No. (%)
81 (53)
65 (45)
NS
Age, mean (SD)
74 (13)
75 (11)
NS
Racial minority, No. (%)
53 (35)
56 (39)
NS
Married, No. (%)
73 (48)
82 (57)
NS
Primary Diagnosis of Cancer, No.(%)
74 (49)
64 (44)
NS
Primary Diagnosis of CHF, No. (%)
52 (34)
45 (31)
NS
Primary Diagnosis of COPD, No. (%)
26 (17)
36 (25)
NS
12 (2)
12 (2)
NS
Lives with family member, No. (%)
105 (69)
114 (79)
NS
Lives in own house/apt., No. (%)
113 (74)
114 (79)
NS
Annual income < 20,000, No. (%)
53 (35)
46 (32)
NS
200 (242)
164 (196)
Functioning (PPS), mean (SD)
59 (12)
58 (13)
Satisfaction, mean (SD)
39 (6)
41 (5)
Education Level, mean (SD)
Days on Service (Survival), #. (%)
.029
NS
.025
22
Percent Satisfied
Patient Satisfaction
100
90
80
70
60
50
40
30
20
10
0
93.1
92.3
80.4
93.4
87
74.1
80
80.8
Baseline
30 Day
60 Day
90 Day
Palliative Care
Usual Care
Percent Very Satisfied at Enrollment (n=277), 30 Days
(n= 216), 60 Days (n=168) and 90 Days Post-enrollment
(n= 149) by Study Group
23
Mean satisfaction score
Adjusted Mean Satisfaction
Scores at Enrollment and 90
Days Post-enrollment by Study Group
45
44
43
42
41
40
39
38
37
36
35
43.56
40.89
40.88
39.35
Palliative Care
P=.004
At enrollment
90 days after enrollment
Usual Care
P=.4
24
Percent Using
Acute Care
Service Use (n=297)
60%
Palliative
50%
Usual Care
40%
58%
36%
32%
30%
20%
20%
10%
0%
*ED
*Hospital
25
* P<.01
Unadjusted Medical
Service Use (n=297)
Mean Number of
Days/Visits
30
Palliative
Usual Care
30
25
20
15
12.39
10
5
0
9.11
7.34
0.290.67
*ED
2.2
*Hospital
3.18
1.77
SNF
* P<.01
4.42
*MD
Office
*Home
Visits
26
Total Service Costs
Palliative
n=292
Usual Care
$25,000
$20,000
$15,000

$20,221
$12,670
$10,000

$5,000
$0
All Costs
p<.001 F=16.66
Adjusted costs of
care for those in
PC were 32.6%
less than those
receiving UC
Saves
$7,551
27
Average Cost Per Day
n=292

$250
$213
$200
$150
$95
$100
$50
$0
Per Day Cost
Palliative
Adjusted average
per day cost of
care by study
group based on
the average days
on service
• PC = $95
• UC = $213
Usual Care
p<.001
28
Site of Death (n=217)
80%

Palliative Care
Usual Care
70%
60%
50%

40%
30%
20%
10%
0%
Home
Hospital
P=.013
SNF
InPt.
Hospice
Studies show
that most
people prefer
to die at home*
Patients
enrolled in the
Palliative Care
program were
significantly
more likely to
die at home
(71% vs. 51%:
p=.001)
*(Townsend, Frank, Fermont, et al., 1990; Karlsen & Addington-Hall, 1998; Hays et al., 2001)
29
Family Comments
"We are so grateful our mother could participate
in your Palliative Care Program. What a gift! It
made possible an independent life until her
death. Thank you for patience, devotion and
capable care."
“But there were moments of stark beauty too. A
hospice priest counseled us about the freedom
that comes from letting go of control. My father
thought quietly, then told me as I helped him
back to bed that this realization had been a
powerful assist, an emotional turning
point. Each day, he told my sister later, had
become a gift, not a burden."
30
Implications



First rigorous study to examine the
effectiveness of an in-home, communitybased, palliative care program
Provides strong clinical and financial
evidence supporting the provision of
palliative care in the home
Tremendous implications for improving
end of life care for terminally ill
• KP adapted as standard care throughout
Southern CA & moving to national
31
Policy Implications


Evidence provided here and in a
previous study support the need for
fundamental changes in the design
of our health care system to bridge
care between standard medical care
and hospice care.
Modification of Hospice benefit or
development of a new “pre-hospice”
benefit
32
Future Studies



Replicate within alternate funding
structure, e.g., medical group
Demonstration project to test
benefited model of care, e.g.,
hospice
Test similar chronic care model
provided upstream, earlier in disease
trajectory
33