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 DevelopmentMount Sinai School of Medicine
Academy Health Annual MeetingJune 2008
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.
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
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
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
Hospice Use is Increasing
1.6 million hospice users in 20064/5 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
Timing of Hospice Care
Life Prolonging + Restorative Treatments
Palliative Care
Hospice
Disease Progression
Diagnosis Death
Bereavement
10-15% of Patients Dis-Enroll from Hospice prior to Death
Dis-enrollment is associated with patient demographic and clinical factors:
Non-white1; Male 2; Younger age 1,2; Non-cancer diagnosis 1,2
No difference by race2,3, age3 gender1,3, diagnosis3
We know little about what happens to individuals once they dis-enroll
1Johnson 2008; 2Casarett, 2001; 3Taylor 2008
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)
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
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)
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
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
Poor Claims-Based Quality Outcomes for Patients Who Dis-Enroll
P<0.001 for each comparison
Dis-Enrolled from Hospice
Enrolled with Hospice until Death
N=9,936 N=80,890
Emergency Department Use 33.9% 3.1%Intensive Care Unit Use 5.7% 0.1%Hospitalization Rate 39.8% 1.6%Days in the hospital 19.3 6.7
Died in Hospital 9.6% 0.4%
Variation Across Hospices in Patient Dis-Enrollment Rate(Average=10.9%)
0%
1%
2%
3%
4%
5%
6%
7%
8%
9%
10%
0 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36 38
Dis-Enrollment Rate
Per
cen
tage
of
Hos
pic
es
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
OR P-Value
Race (reference is White non-Hispanic)White Hispanic 1.28 <0.0001Black 1.55 <0.0001Other 1.59 <0.0001
Newer hospice 1.14 0.0066Size
45 - 99 patients with cancer per year 0.88 0.0031100-199 patients with cancer per year 0.81 <0.0001200+ patients with cancer per year 0.84 0.0479
Highly competitive market 1.24 0.0019
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
Implications1. Dis-enrollment appears associated with poor quality
care; better measures are needed2. Higher dis-enrollment by minorities remains
concerning3. 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
