1. 1 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 sengui@aol.com

2. 2 Goals of Discussion Brief overview of End-of-Life Care Brief overview of End-of-Life Care Introduction to Home-based Palliative Care Introduction to Home-based Palliative Care Evidence of Effectiveness Evidence of Effectiveness Policy Implications Policy Implications Next Steps Next Steps

3. 3 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. Palliative Care: pain and symptom relief provided for those with serious illness.

4. 4 Challenges in Providing End-of-Life Care Fragmentation of care Fragmentation of care Aging population Aging population Costs of medical care Costs of medical care 25% of Medicare revenue is spent on 5% who die each year25% 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 year of life is $26,000 (1996 costs) Average cost of care in last 2 years $ 58,000Average cost of care in last 2 years $ 58,000

5. 5 Relieve suffering (hospice) Curative / life-prolonging therapy PresentationDeath A dichotomous intent

6. 6 Barriers to Hospice Systemic Physician Patient

7. 7 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%)

8. 8 Home Based Palliative Care Model Bridge traditional medical care and Hospice care Bridge traditional medical care and Hospice care In home end-of-life care for patients with one year life expectancy In home end-of-life care for patients with one year life expectancy Blended model of care Blended model of care Shift focus of care from hospital to home Shift focus of care from hospital to home

9. 9 Hospice Palliative care Curative / remissive therapy PresentationDeath

10. 10 Core Components of Palliative Care Interdisciplinary team Interdisciplinary team Physical, medical, psychological, social & spiritual support Physical, medical, psychological, social & spiritual support Care provided in home Care provided in home Patient & family education & training Patient & family education & training Coordinated, patient-centered plan of care Coordinated, patient-centered plan of care

11. 11 Pain & symptom management Pain & symptom management comprehensive primary care to manage underlying conditionscomprehensive primary care to manage underlying conditions aggressive treatment of acute exacerbation per patient and family requestaggressive treatment of acute exacerbation per patient and family request 24 hour phone support, visits if necessary 24 hour phone support, visits if necessary Volunteer & bereavement services Volunteer & bereavement services Transfer to hospice if appropriate Transfer to hospice if appropriate Core Components of Palliative Care

12. 12 Palliative Care vs. Hospice Physicians not required to give a 6 month prognosis Physicians not required to give a 6 month prognosis Patients do not have to forego curative care Patients do not have to forego curative care Palliative care physician coordinates care to prevent service fragmentation Palliative care physician coordinates care to prevent service fragmentation

13. 13 Progression of In Home Palliative Care Model Pilot study conducted in Kaiser Permanente (KP) Southern California in 1998 Pilot study conducted in Kaiser Permanente (KP) Southern California in 1998 Comparison group study KP Southern California in 1999 Comparison group study KP Southern California in 1999 Won National KP Voh’s Award for Quality in 2002 Won National KP Voh’s Award for Quality in 2002

14. 14 Project Overview Funded by Garfield Memorial Fund Randomized controlled trial in Kaiser Permanente Colorado & Hawaii (2002-2004) Randomized controlled trial in Kaiser Permanente Colorado & Hawaii (2002-2004) Study period: 2 years (approximately 18 months of data collection) Study period: 2 years (approximately 18 months of data collection) 310 patients recruited from 2 sites 310 patients recruited from 2 sites Colorado n=150, Hawaii n=160Colorado n=150, Hawaii n=160

15. 15 Data Collection Phone interviews at baseline and every 30 days up to 120 days Phone interviews at baseline and every 30 days up to 120 days Functional statusFunctional status SatisfactionSatisfaction At death or discharge from study At death or discharge from study Service utilizationService utilization Medical care cost dataMedical care cost data Site of deathSite of death

16. 16 Garfield Multisite Study Design

17. 17 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

18. 18 Study Groups Usual Care (UC) Usual Care (UC) One visit by home health nurse to assess for further needOne visit by home health nurse to assess 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 interdisciplinary palliative team (physician, nurse, social worker, HHA, volunteers, pastor on request)Multiple home visits provided by interdisciplinary palliative team (physician, nurse, social worker, HHA, volunteers, pastor on request) Access to all usual medical care servicesAccess to all usual medical care services

19. 19 Patient Flowchart 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 310 Randomized 155 Assigned to Intervention: 2 Withdrew 8 died before receiving care 155 Assigned to Usual Care 3 withdrew 152 Included in Final Analysis145 Included in Final Analysis

20. 20 Demographics of Study Participants Mean Age 74 (sd=12) Mean Age 74 (sd=12) 77% of study participants were over 65. The age range spanned from 38- 10177% of study participants were over 65. The age range spanned from 38- 101 51% Male 51% Male Primary Diagnosis Primary Diagnosis 46.5% Cancer46.5% Cancer 32.7% CHF32.7% CHF 20.8% COPD20.8% COPD Mean of 2.5 major medical conditions (sd=1.4) Mean of 2.5 major medical conditions (sd=1.4) Marital Status Marital Status 52.2% Married 29.3% Widowed 8.1% Single 6.7% Divorced 3.7% Unknown Ethnicity Ethnicity 63% Caucasian 16% Asian/Pacific Islanders 13% Hawaiian 5% Latino 2% African American 1% Other

21. 21 Baseline Group Comparisons No differences between study groups at enrollment in terms of: No differences between study groups at enrollment in terms of: Demographics: ethnicity, age, gender, marital status, income levelDemographics: ethnicity, age, gender, marital status, income level Palliative Performance ScalePalliative Performance Scale Palliative Care more satisfied with services at baseline Palliative Care more satisfied with services at baseline Usual Care had significantly more days on service before death Usual Care had significantly more days on service before death

22. 22 Baseline Variables Usual Care (n=153) Intervention(n=145)P 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 Education Level, mean (SD) 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 Days on Service (Survival), #. (%) 200 (242) 164 (196).029 Functioning (PPS), mean (SD) 59 (12) 58 (13) NS Satisfaction, mean (SD) 39 (6) 41 (5).025

23. 23 Patient Satisfaction 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

24. 24 Adjusted Mean Satisfaction Scores at Enrollment and 90 Days Post-enrollment by Study Group P=.004P=.4

25. 25 Acute Care Service Use (n=297) * P<.01

26. 26 Unadjusted Medical Service Use (n=297) * P<.01

27. 27 Total Service Costs Adjusted costs of care for those in PC were 32.6% less than those receiving UC Adjusted costs of care for those in PC were 32.6% less than those receiving UC Saves $7,551 Saves $7,551 p<.001 F=16.66 n=292

28. 28 Average Cost Per Day Adjusted average per day cost of care by study group based on the average days on service Adjusted average per day cost of care by study group based on the average days on service PC = $95 UC = $213 p<.001 n=292

29. 29 Site of Death (n=217) Studies show that most people prefer to die at home* 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) 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) P=.013

30. 30 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."

31. 31 Implications First rigorous study to examine the effectiveness of an in-home, community- based, palliative care program First rigorous study to examine the effectiveness of an in-home, community- based, palliative care program Provides strong clinical and financial evidence supporting the provision of palliative care in the home 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 Tremendous implications for improving end of life care for terminally ill KP adapted as standard care throughout Southern CA & moving to nationalKP adapted as standard care throughout Southern CA & moving to national

32. 32 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. 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 Modification of Hospice benefit or development of a new “pre-hospice” benefit

33. 33 Future Studies Replicate within alternate funding structure, e.g., medical group Replicate within alternate funding structure, e.g., medical group Demonstration project to test benefited model of care, e.g., hospice Demonstration project to test benefited model of care, e.g., hospice Test similar chronic care model provided upstream, earlier in disease trajectory Test similar chronic care model provided upstream, earlier in disease trajectory