11

Replication of a Home-Based Replication of a Home-Based Palliative Care Program: Palliative Care Program:

A Multi-site StudyA Multi-site Study

Susan Enguidanos, PhDSusan Enguidanos, PhDDirector, Research CenterDirector, Research Center

Partners in Care FoundationPartners in Care Foundation

Assistant ProfessorAssistant Professor

Davis School of GerontologyDavis School of Gerontology

University of Southern CaliforniaUniversity of Southern Californiasengui@aol.comsengui@aol.com

22

Goals of DiscussionGoals of Discussion

Brief overview of End-of-Life CareBrief overview of End-of-Life Care Introduction to Home-based Palliative Introduction to Home-based Palliative

CareCare Evidence of EffectivenessEvidence of Effectiveness Policy ImplicationsPolicy Implications Next StepsNext Steps

33

Definition of TermsDefinition of Terms

Hospice: Medicare benefit for last 6 Hospice: Medicare benefit for last 6 months of life for those with terminal months of life for those with terminal illness.illness.

Palliative Care: pain and symptom Palliative Care: pain and symptom relief provided for those with serious relief provided for those with serious illness. illness.

44

Challenges in ProvidingChallenges in ProvidingEnd-of-Life CareEnd-of-Life Care

Fragmentation of careFragmentation of care Aging populationAging population Costs of medical careCosts of medical care

• 25% of Medicare revenue is spent on 5% who 25% of Medicare revenue is spent on 5% who die each year die each year

• Average cost of care in last year of life is Average cost of care in last year of life is $26,000 (1996 costs)$26,000 (1996 costs)

• Average cost of care in last 2 years $ 58,000Average cost of care in last 2 years $ 58,000

55

Relieve suffering (hospice)Relieve suffering (hospice)

Curative / life-prolonging therapyCurative / life-prolonging therapy

Presentation Death

A dichotomous intentA dichotomous intent

66

Barriers to HospiceBarriers to Hospice

Systemic Physician Patient

77

Impact of BarriersImpact 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%)

88

Home Based Palliative Care ModelHome Based Palliative Care Model Bridge traditional medical care and Bridge traditional medical care and

Hospice careHospice care In home end-of-life care for patients In home end-of-life care for patients

with one year life expectancywith one year life expectancy Blended model of careBlended model of care Shift focus of care from hospital to Shift focus of care from hospital to

homehome

99

HospiceHospicePalliative carePalliative care

Curative / remissive therapyCurative / remissive therapy

Presentation Death

1010

Core Components Core Components of Palliative Careof Palliative Care

Interdisciplinary team Interdisciplinary team Physical, medical, psychological, Physical, medical, psychological,

social & spiritual supportsocial & spiritual support Care provided in homeCare provided in home Patient & family education & Patient & family education &

trainingtraining Coordinated, patient-centered plan Coordinated, patient-centered plan

of careof care

1111

Pain & symptom managementPain & symptom management• comprehensive primary care to manage comprehensive primary care to manage

underlying conditionsunderlying conditions• aggressive treatment of acute exacerbation aggressive treatment of acute exacerbation

per patient and family requestper patient and family request 24 hour phone support, visits if 24 hour phone support, visits if

necessarynecessary Volunteer & bereavement servicesVolunteer & bereavement services Transfer to hospice if appropriateTransfer to hospice if appropriate

Core Components Core Components of Palliative Careof Palliative Care

1212

Palliative Care vs. HospicePalliative Care vs. Hospice

Physicians not required to give a 6 Physicians not required to give a 6 month prognosismonth prognosis

Patients do not have to forego Patients do not have to forego curative carecurative care

Palliative care physician coordinates Palliative care physician coordinates care to prevent service fragmentationcare to prevent service fragmentation

1313

Progression ofProgression ofIn Home Palliative Care Model In Home Palliative Care Model

Pilot study conducted in Kaiser Pilot study conducted in Kaiser Permanente (KP) Southern California Permanente (KP) Southern California in 1998 in 1998

Comparison group study KP Southern Comparison group study KP Southern California in 1999California in 1999

Won National KP Voh’s Award for Won National KP Voh’s Award for Quality in 2002Quality in 2002

1414

Project Overview Project Overview Funded by Garfield Memorial FundFunded by Garfield Memorial Fund

Randomized controlled trial in Kaiser Randomized controlled trial in Kaiser Permanente Colorado & Hawaii Permanente Colorado & Hawaii (2002-2004)(2002-2004)

Study period: 2 years (approximately Study period: 2 years (approximately 18 months of data collection)18 months of data collection)

310 patients recruited from 2 sites310 patients recruited from 2 sites• Colorado n=150, Hawaii n=160Colorado n=150, Hawaii n=160

1515

Data CollectionData Collection Phone interviews at baseline and Phone interviews at baseline and

every 30 days up to 120 daysevery 30 days up to 120 days• Functional statusFunctional status• SatisfactionSatisfaction

At death or discharge from studyAt death or discharge from study• Service utilization Service utilization • Medical care cost dataMedical care cost data• Site of deathSite of death

1616

Garfield Multisite Garfield Multisite Study DesignStudy Design

Measurement Intervals Enrollment 30 Days 60 Days 90 Days 120 Days Death or End of Study

Study Groups

-Demographics -Service

-PPS -PPS -PPS -PPS -PPS Use -Satisfaction w/ -Satisfaction w/ -Satisfaction w/ -Satisfaction w/ -Satisfaction w/ Services Services Services Services Services

Intervention Group

Comparison Group

R

1717

Enrollment CriteriaEnrollment 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

1818

Study GroupsStudy Groups Usual Care (UC)Usual Care (UC)

• One visit by home health nurse to One visit by home health nurse to assess for further needassess for further need

• Access to all usual medical care servicesAccess to all usual medical care services Palliative Care (PC)Palliative Care (PC)

• Multiple home visits provided by Multiple home visits provided by interdisciplinary palliative team interdisciplinary palliative team (physician, nurse, social worker, HHA, (physician, nurse, social worker, HHA, volunteers, pastor on request)volunteers, pastor on request)

• Access to all usual medical care servicesAccess to all usual medical care services

1919

Patient Patient FlowchartFlowchart

718 Potential Participants referred to

the study

Excluded (n=408):199 Ineligible67 Admitted to Hospice59 Refused35 Died26 In other study19 Other

310 Randomized

155 Assigned to Intervention:

2 Withdrew8 died before receiving care

155 Assigned to Usual Care3 withdrew

152 Included in Final Analysis145 Included in Final Analysis

2020

Demographics of Demographics of Study ParticipantsStudy Participants

Mean Age 74 (sd=12)Mean Age 74 (sd=12)• 77% of study participants 77% of study participants

were over 65. The age were over 65. The age range spanned from 38-range spanned from 38-101101

51% Male51% Male Primary DiagnosisPrimary Diagnosis

• 46.5% Cancer46.5% Cancer

• 32.7% CHF32.7% CHF

• 20.8% COPD20.8% COPD Mean of 2.5 major medical Mean of 2.5 major medical

conditions (sd=1.4)conditions (sd=1.4)

Marital StatusMarital Status• 52.2% Married52.2% Married• 29.3% Widowed29.3% Widowed• 8.1% Single8.1% Single• 6.7% Divorced6.7% Divorced• 3.7% Unknown3.7% Unknown

EthnicityEthnicity• 63% Caucasian63% Caucasian• 16% Asian/Pacific 16% Asian/Pacific

IslandersIslanders• 13% Hawaiian13% Hawaiian• 5% Latino5% Latino• 2% African American2% African American• 1% Other1% Other

2121

Baseline Group ComparisonsBaseline Group Comparisons No differences between study groups at No differences between study groups at

enrollment in terms of:enrollment in terms of:• Demographics: ethnicity, age, gender, Demographics: ethnicity, age, gender,

marital status, income levelmarital status, income level• Palliative Performance ScalePalliative Performance Scale

Palliative Care more satisfied with Palliative Care more satisfied with services at baselineservices at baseline

Usual Care had significantly more days Usual Care had significantly more days on service before deathon service before death

2222

Baseline VariablesBaseline VariablesUsual Care Usual Care

(n=153)(n=153)InterventionIntervention

(n=145)(n=145)PP

Female, No. (%)Female, No. (%) 81 (53)81 (53) 65 (45)65 (45) NSNS

Age, mean (SD)Age, mean (SD) 74 (13)74 (13) 75 (11)75 (11) NSNS

Racial minority, No. (%)Racial minority, No. (%) 53 (35)53 (35) 56 (39)56 (39) NSNS

Married, No. (%)Married, No. (%) 73 (48)73 (48) 82 (57)82 (57) NSNS

Primary Diagnosis of Cancer, No.(%)Primary Diagnosis of Cancer, No.(%) 74 (49)74 (49) 64 (44)64 (44) NSNS

Primary Diagnosis of CHF, No. (%)Primary Diagnosis of CHF, No. (%) 52 (34)52 (34) 45 (31)45 (31) NSNS

Primary Diagnosis of COPD, No. (%)Primary Diagnosis of COPD, No. (%) 26 (17)26 (17) 36 (25)36 (25) NSNS

Education Level, mean (SD)Education Level, mean (SD) 12 (2)12 (2) 12 (2)12 (2) NSNS

Lives with family member, No. (%)Lives with family member, No. (%) 105 (69)105 (69) 114 (79)114 (79) NSNS

Lives in own house/apt., No. (%)Lives in own house/apt., No. (%) 113 (74)113 (74) 114 (79)114 (79) NSNS

Annual income < 20,000, No. (%)Annual income < 20,000, No. (%) 53 (35)53 (35) 46 (32)46 (32) NSNS

Days on Service (Survival), #Days on Service (Survival), #. (%). (%) 200 (242)200 (242) 164 (196)164 (196) .029.029

Functioning (PPS), mean (SD)Functioning (PPS), mean (SD) 59 (12)59 (12) 58 (13)58 (13) NSNS

Satisfaction, mean (SD)Satisfaction, mean (SD) 39 (6)39 (6) 41 (5)41 (5) .025.025

2323

Patient SatisfactionPatient Satisfaction

80.474.1

93.1

80

92.387

93.4

80.8

0102030405060708090

100

Palliative Care Usual Care

Per

cent

Sat

isfie

d

Baseline

30 Day

60 Day

90 Day

Percent Very Satisfied at Enrollment (n=277), 30 Days Percent Very Satisfied at Enrollment (n=277), 30 Days (n= 216), 60 Days (n=168) and 90 Days Post-enrollment (n= 216), 60 Days (n=168) and 90 Days Post-enrollment

(n= 149) by Study Group(n= 149) by Study Group

2424

Adjusted Mean Satisfaction Adjusted Mean Satisfaction Scores at Enrollment and 90 Scores at Enrollment and 90

Days Post-enrollment by Study GroupDays Post-enrollment by Study Group

40.89

39.35

43.56

40.88

3536373839404142434445

Palliative Care Usual Care

Mea

n sa

tisfa

ctio

n sc

ore

At enrollment

90 days after enrollment

P=.004 P=.4

2525

Acute Care Acute Care Service Use (n=297)Service Use (n=297)

20%

32%36%

58%

0%

10%

20%

30%

40%

50%

60%

Per

cent

Usi

ng

*ED *Hospital

Palliative

Usual Care

* P<.01

2626

Unadjusted Medical Unadjusted Medical Service Use (n=297)Service Use (n=297)

0.290.672.2

7.34

1.773.18 4.42

9.11

30

12.39

0

5

10

15

20

25

30

Mea

n N

um

ber

of

Day

s/V

isit

s

*ED *Hospital SNF *MDOffice

*HomeVisits

PalliativeUsual Care

* P<.01

2727

Total Service CostsTotal Service Costs

$12,670

$20,221

$0

$5,000

$10,000

$15,000

$20,000

$25,000

All Costs

Palliative

Usual Care Adjusted costs of Adjusted costs of care for those in care for those in PC were 32.6% PC were 32.6% less than those less than those receiving UCreceiving UC

Saves Saves $7,551$7,551

p<.001 F=16.66

n=292

2828

Average Cost Per DayAverage Cost Per Day

$95

$213

$0

$50

$100

$150

$200

$250

Per Day Cost

Palliative Usual Care

Adjusted average Adjusted average per day cost of per day cost of care by study care by study group based on group based on the average days the average days on serviceon service• PC = $95PC = $95• UC = $213UC = $213

p<.001

n=292

2929

Site of Death (n=217)Site of Death (n=217)

0%

10%

20%

30%

40%

50%

60%

70%

80%

Home Hospital SNF InPt.Hospice

Palliative Care

Usual Care

Studies show Studies show that most people that most people prefer to die at prefer to die at home* home*

Patients enrolled Patients enrolled in the Palliative in the Palliative Care program Care program were were significantly significantly more likely to die more likely to die at home (71% at home (71% vs. 51%: p=.001)vs. 51%: p=.001)

*(Townsend, Frank, Fermont, et al., 1990; Karlsen & Addington-Hall, 1998; Hays et al., 2001)

P=.013

3030

Family CommentsFamily Comments"We are so grateful our mother could participate "We are so grateful our mother could participate

in your Palliative Care Program.  What a gift!  It in your Palliative Care Program.  What a gift!  It made possible an independent life until her made possible an independent life until her death. Thank you for patience, devotion and death. Thank you for patience, devotion and capable care."capable care."

““But there were moments of stark beauty too.  A But there were moments of stark beauty too.  A hospice priest counseled us about the freedom hospice priest counseled us about the freedom that comes from letting go of control.  My father that comes from letting go of control.  My father thought quietly, then told me as I helped him thought quietly, then told me as I helped him back to bed that this realization had been a back to bed that this realization had been a powerful assist, an emotional turning point.  powerful assist, an emotional turning point.  Each day, he told my sister later, had become a Each day, he told my sister later, had become a gift, not a burden."gift, not a burden."

3131

ImplicationsImplications

First rigorous study to examine the First rigorous study to examine the effectiveness of an in-home, community-effectiveness of an in-home, community-based, palliative care program based, palliative care program

Provides strong clinical and financial Provides strong clinical and financial evidence supporting the provision of evidence supporting the provision of palliative care in the homepalliative care in the home

Tremendous implications for improving Tremendous implications for improving end of life care for terminally ill end of life care for terminally ill • KP adapted as standard care throughout KP adapted as standard care throughout

Southern CA & moving to nationalSouthern CA & moving to national

3232

Policy ImplicationsPolicy Implications

Evidence provided here and in a Evidence provided here and in a previous study support the need for previous study support the need for fundamental changes in the design fundamental changes in the design of our health care system to bridge of our health care system to bridge care between standard medical care care between standard medical care and hospice care.and hospice care.

Modification of Hospice benefit or Modification of Hospice benefit or development of a new “pre-hospice” development of a new “pre-hospice” benefitbenefit

3333

Future StudiesFuture Studies

Replicate within alternate funding Replicate within alternate funding structure, e.g., medical groupstructure, e.g., medical group

Demonstration project to test Demonstration project to test benefited model of care, e.g., benefited model of care, e.g., hospicehospice

Test similar chronic care model Test similar chronic care model provided upstream, earlier in disease provided upstream, earlier in disease trajectorytrajectory