Patterns of functional decline in hospice: what can individuals and their families expect?
OBJECTIVE
To describe the trajectory of functional decline after an individual is referred to hospice.


METHODS
Electronic health record-based retrospective cohort study.


METHODS
Three hospice programs in the U.S. southeast, northeast, and midwest.


METHODS
Individuals in hospice.


METHODS
Palliative Performance Scale (PPS) scores measured at intervals between hospice enrollment and death, on a scale from 10 to 100.


RESULTS
In 8,669 decedents, there was an average 13.8-point decline in PPS score. After adjusting for baseline PPS score and length of stay in hospice, three distinct trajectories were identified, each of which consisted of two diagnoses whose rates of decline had 95% confidence intervals (CIs) that overlapped. The most rapid decline was observed for individuals with cancer (adjusted decline 8.44 points/wk; 95% CI = 8.03-8.82) and stroke (adjusted decline 7.67 points/wk, 95% CI = 7.08-8.29). A significantly slower decline was observed in individuals with pulmonary disease (adjusted decline 5.02 points/wk, 95% CI = 4.24-5.75) and cardiac disease (adjusted decline 4.53 points/wk, 95% CI = 4.05-5.05). Individuals with debility (adjusted decline 1.86 points/wk, 95% CI = 0.95-2.78) and dementia (adjusted decline 1.98 points/wk, 95% CI = 1.01-2.89) had the slowest decline. In an inverse probability-weighted sample of individuals who had a PPS score recorded in the last day of life (n = 1,959, 22.6%), 35.9% had a PPS score of at least 40, indicating some oral intake, variable mental status, limited self-care, and an ability to get out of bed for at least part of the day.


CONCLUSIONS
Although functional status generally declines in individuals in hospice, this decline is heterogeneous. Some individuals retain some physical and cognitive function until the last day of life.
Kansas City Hospice and Palliative Care, Kansas City, Kansas, USA.
Pamela
P
Harris
Esther
E
Wong
Sue
S
Farrington
Teresa R
TR
Craig
Joan K
JK
Harrold
Betty
B
Oldanie
Joan M
JM
Teno
David J
DJ
Casarett
D000203:Activities of Daily Living; D000368:Aged; D018450:Disease Progression; D005260:Female; D006738:Hospices; D006801:Humans; D008297:Male; D010166:Palliative Care; D011379:Prognosis; D012189:Retrospective Studies; D019452:Terminally Ill; D014481:United States