1. Hospice Dis-Enrollment and Quality of Care at the End-of-Life Melissa D.A. Carlson, Ph.D., M.B.A. Brookdale Department of Geriatrics & Adult Development Mount Sinai School of Medicine Academy Health Annual Meeting June 2008

2. Co-Authors  Jeph Herrin, Ph.D.  Qingling Du, M.S.  Andrew J. Epstein, Ph.D.  Emily Cherlin, M.S.  Sean Morrison, M.D.  Elizabeth H. Bradley, Ph.D.

3. Funding  National Cancer Institute (1R01CA116398- 01A2)  Dr. Carlson is a Brookdale Leadership in Aging Fellow and recipient of an NINR Career Development Award (1K99NR010495-01)  Dr. Bradley is supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation Investigator Award (Grant #02-102) No disclosures or conflicts of interest

4. What do Older Adults With Serious Illness Experience? Not enough contact with MD: 78% Not enough emotional support (patient): 51% Not enough information about what to expect with the the dying process: 50% Not enough emotional support (family): 38% Not enough help with symptoms: 19% Although most people report wanting to die at home, less than 20% do so * Teno et al. JAMA 2004;291:88-93; Gallo, 2001

5. What is Hospice? Multidisciplinary approach to care for patients suffering from serious and life-limiting illness Covered by the Medicare Hospice Benefit Patients are eligible if they have life expectancy of 6 months or less if disease follows its normal course Willing to forego regular Medicare services focused on cure for primary illness Hospice services include nurse and physician visits, pain management, counseling (spiritual or other), homemaker, respite care, and bereavement counseling 75% of hospice care is provided in the home

6. Hospice Use is Increasing 1.6 million hospice users in 2006 4/5 of these individuals were age 65+ 1/3 of these individuals were age 85+ 36% of all decedents in 2006 were under the care of a hospice program

7. Timing of Hospice Care Life Prolonging + Restorative Treatments Palliative Care Hospice Disease Progression DiagnosisDeath Bereavement

8. 10-15% of Patients Dis-Enroll from Hospice prior to Death Dis-enrollment is associated with patient demographic and clinical factors: Non-white 1; Male 2; Younger age 1,2; Non-cancer diagnosis 1,2 No difference by race 2,3, age 3 gender 1,3, diagnosis 3 We know little about what happens to individuals once they dis-enroll 1 Johnson 2008; 2 Casarett, 2001; 3 Taylor 2008

9. Reasons for Dis-enrollment Patients initiated dis-enrollment: Desire to pursue curative care Dissatisfaction with hospice care Transfer out of service area Hospice initiated dis-enrollment Unable to manage patients’ condition at home Patient hospitalized or admitted to nursing home Patient no longer eligible for the MHB (i.e., “fails to die in a timely manner”) Important given regulatory pressure and audits of long-stay patients particularly those with non-cancer diagnoses (e.g., dementia)

10. Why do we care about dis- enrollment? 1. May be at high risk for claims-based indicators of quality of end of life care: Hospitalization ICU use Emergency department use Hospital death 2. Patient/family miss potentially beneficial services (bereavement counseling, supportive home care) Unmet physical, psychological, spiritual needs

11. Specific Aims Determine the association between hospice dis-enrollment and claims-based indicators of quality of care Determine the association between hospice dis-enrollment and Hospice characteristics (age, size, ownership, staffing levels) Market characteristics (competition, region, urban/rural location)

12. Methods Data: Linked SEER-Medicare claims data Sample: Individuals who died with a primary diagnosis of cancer between 1998-2002 and who used hospice prior to death

13. Characteristics of the Sample Patients (N=90,826) Average age was 78.5 years 86% White non-Hispanic 52% Female Hospices (N=1,384) 77% more than 5 years old 89% small (<50 patients w/cancer/year) 63% non-profit

14. Poor Claims-Based Quality Outcomes for Patients Who Dis-Enroll P<0.001 for each comparison

15. Variation Across Hospices in Patient Dis-Enrollment Rate (Average=10.9%)

16. Factors Associated with Dis-Enrollment Controlled for age, gender, comorbidity index value, home/inpatient hospice, staffing levels, urban/rural, region, and year Generalized linear model accounting for the correlation of patient obs. within hospices

17. Limitations  Sample includes only patients with cancer  Quality indicators are those measurable with claims data; better measures addressing the needs of pateints who dis-enroll are needed

18. Implications 1. Dis-enrollment appears associated with poor quality care; better measures are needed 2. Higher dis-enrollment by minorities remains concerning 3. Variation across hospices in dis-enrollment potentially indicates differences in ability to meet the needs of some patient groups 4. Higher dis-enrollment in competitive markets could indicate a practice of “casting a wide net”  critical as the number of hospices continues to increase at a dramatic rate