PURPOSE We undertook a study to identify distinct functional trajectories in the year before hospice, to determine how patients with these trajectories differ according to demographic characteristics and hospice diagnosis, and to evaluate the association between these trajectories and subsequent outcomes.METHODS From an ongoing cohort study of 754 community-living persons aged 70 years or older, we evaluated data on 213 persons who were subsequently enrolled in hospice from March 1998 to December 2011. Disability in 13 basic, instrumental, and mobility activities was assessed during monthly telephone interviews through June 2012.
RESULTSIn the year before hospice, we identified 5 clinically distinct functional trajectories, representing worsening cumulative burden of disability: late decline (10.8%), accelerated (10.8%), moderate (21.1%), progressively severe (24.9%), and persistently severe (32.4%). Participants with a cancer diagnosis (34.7%) had the most favorable functional trajectories (ie, lowest burden of disability), whereas those with neurodegenerative disease (21.1%) had the worst. Median survival in hospice was only 14 days and did not differ significantly by functional trajectory. Compared with participants in the persistently severe trajectory, those in the moderate trajectory had the highest likelihood of surviving and being independent in at least 1 activity in the month after hospice admission (adjusted odds ratio = 5.5; 95% CI, 1.9-35.9).
CONCLUSIONSThe course of disability in the year before hospice differs greatly among older persons but is particularly poor among those with neurodegenerative disease. Late admission to hospice (as shown by the short survival), coupled with high levels of severe disability before hospice, highlight potential unmet palliative care needs for many older persons at the end of life.
INTRODUCTIONO lder persons with persistent levels of severe disability have high mortality and substantial care needs.1,2 One option for addressing these needs is palliative care, a specialized medical and interdisciplinary care approach that aims to alleviate stress, pain, and other distressing symptoms among those with serious illness, independent of prognosis or treatment being pursued, with the goal of optimizing quality of life for both patients and families.3 Hospice care, a similar approach, is a second option. In the United States, hospice is largely defined by the Medicare Hospice Benefit, which restricts services to persons who have an expected survival of 6 months or less. Because hospice also limits the pursuit of curative and most life-prolonging therapies, it is often considered only for patients who have end-stage, terminal conditions, or when death is imminent. [4][5][6][7][8][9][10][11][12][13][14][15] Palliative care is often confused with hospice and can be difficult to access. 16 Consequently, many older persons do not receive hospice or palliative care near the end of life, 17,18 which can place a high burden on caregivers 19 and result in suffering.
20Alt...