Replication of a Home-Based Palliative Care Program: A Multi-site Study

1. Susan Enguidanos, PhD Director, Research Center Partners in Care Foundation Assistant Professor Davis School of Gerontology University of Southern California sengui@aol.com Replication of a Home-Based Palliative Care Program: A Multi-site Study

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

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.

4. Challenges in ProvidingEnd-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

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

6. Barriers to Hospice • Systemic • Physician • Patient

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. 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

9. Curative / remissive therapy Presentation Death Palliative care Hospice

10. 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

11. 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

12. 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

13. Progression ofIn 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

14. 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

15. 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

16. Garfield Multisite Study Design

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. 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

19. 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 145 Included in Final Analysis 152 Included in Final Analysis Patient Flowchart

20. Mean Age 74 (sd=12) 77% of study participants were over 65. The age range spanned from 38-101 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 Demographics of Study Participants

21. 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

22. Baseline Variables

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

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

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

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

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

29. Site of Death (n=217) • 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) P=.013 *(Townsend, Frank, Fermont, et al., 1990; Karlsen & Addington-Hall, 1998; Hays et al., 2001)

30. "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." Family Comments

31. Implications • 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 • Tremendous implications for improving end of life care for terminally ill • KP adapted as standard care throughout Southern CA & moving to national

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

33. 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