Survival in hospice patients with dementia: the effect of home hospice and nurse visits.

BACKGROUND: Hospice patients with dementia are at increased risk for live discharge and long lengths of stay (>180 days), causing patient and family caregiver stress and burden. The location and timing of clinician visits are important factors influencing whether someone dies as expected, in hospice, or experiences a live discharge or long length of stay. OBJECTIVE: Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare-intended 6-month period. DESIGN: Retrospective cohort study. SETTING: Non-profit hospice agency. PARTICIPANTS: Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017. METHODS: Multivariable survival analyses examined the effects of receiving home hospice (vs. nursing home) and timing of nurse visits on death within 6 months of hospice enrollment, compared to live discharge or long length of stay. Models adjust for relevant demographic and clinical factors. RESULTS: Thirty-nine percent (39%) of patients experienced live discharge or long length of stay. Home hospice patients were more likely to experience live discharge or long length of stays (HR for death: 0.77, 95%CI: 0.69-0.86, p < 0.001). Frequency of nurse visits was inversely associated with live discharge and long lengths of stay (HR for death: 2.87, 95%CI: 2.47-3.33, p < 0.001). CONCLUSION: Nearly 40% of patients with dementia in our study experienced live discharge or a long length of stay. Additional research is needed to understand why home hospice may result in live discharge or a long length of stay for patients with dementia. Nurse visits were associated with death, suggesting their responsiveness to deteriorating patient health. Hospice guidelines may need to permit longer stays so community-dwelling patients with dementia, a growing segment of hospice patients, can remain continuously enrolled in hospice and avoid burden and costs associated with live discharge.

Frequency and Risk Factors for Live Discharge from Hospice.

OBJECTIVES: To report frequencies and associated risk factors for 4 distinct causes of live discharge from hospice. DESIGN: Retrospective cohort study using electronic medical records of hospice patients who received care from a large urban not-for-profit hospice agency in New York City during a 3-year period between 2013 and 2015 (n = 9,190). RESULTS: Roughly one in five hospice patients were discharged alive (21%; n = 1911). Acute hospitalization was the most frequent reason for live discharge (42% of all live discharges; n = 802). Additional reasons included elective revocation to resume disease-directed treatments (18%; n = 343), disqualification (14%; n = 271), and service transfers or moves (26%; n = 495). Multinomial logistic regression analyses revealed that risk for acute hospitalization was higher among younger patients (age AOR = 0.98 [95% CI = 0.98-0.99] P < .01), racial/ethnic minorities (Hispanic AOR = 2.23 [CI = 1.82-2.73] P < .001; African American OR = 2.46 [CI = 2.00-3.03] P < .001; Asian/other OR = 1.63 [CI = 1.25-2.11] P < .001), and patients without advance directives (AOR = 1.41 [95% CI = 0.98-0.99] P < .001). Disqualification occurred much more frequently among patients with non-cancer diagnoses, including dementia (AOR = 13.14 [95% CI = 7.96-21.61] P < .001) and pulmonary disease (AOR = 11.68 [95% CI = 6.58-20.74] P < .001). Transfers and service moves were more common among Hispanics (AOR = 1.56 [95% CI = 1.45-2.34] P < .001), African Americans (AOR = 1.35 [95% CI = 1.03-1.79] P < .05), patients without a primary caregiver (AOR = 1.35 [95% CI = 1.09-1.67] P < .001), and those without advance directives (AOR = 1.30 [95% CI = 1.07-1.58] P < .01). CONCLUSION: Further research into factors that underlie live discharge events, especially acute hospitalization, is warranted given their cost and burden for patients/families. Hospices should develop strategies to address acute medical crises and thoroughly evaluate patients' suitability, unmet needs, and knowledge about end-of-life issues at the time of hospice enrollment, especially for those with non-cancer diagnoses.