Patterns of functional decline in hospice: what can individuals and their families expect?

OBJECTIVES: To describe the trajectory of functional decline after an individual is referred to hospice. DESIGN: Electronic health record-based retrospective cohort study. SETTING: Three hospice programs in the U.S. southeast, northeast, and midwest. PARTICIPANTS: Individuals in hospice. MAIN OUTCOME MEASURES: 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. CONCLUSION: 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.

Advancing the science of hospice care: Coalition of Hospices Organized to Investigate Comparative Effectiveness.

PURPOSE OF REVIEW: There is very little high-quality evidence to guide clinical practice in hospice care. In the areas of medical therapy, patient-centered and family-centered outcomes, and patient safety, there are numerous high-impact questions for which answers are needed. Although randomized controlled trials are the gold standard for research, such trials are difficult, time consuming, and expensive to conduct in a hospice population. Moreover, they cannot examine the implementation of therapies in real-world settings. Therefore, there is a need for novel, complementary approaches to research in this unique population. RECENT FINDINGS: This article describes the initial experience of the Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE). CHOICE is a national network of hospices that use electronic health record-based data collection procedures to answer key questions relevant to clinical care and policy. By using a rich source of existing data to conduct observational studies, CHOICE is able to overcome many of the most significant challenges of randomized controlled trials in hospice. However, this approach also created unique challenges related to governance and privacy concerns. SUMMARY: CHOICE is a growing research network that has the potential to make a contribution to the science of palliative care in a hospice population.

The art versus science of predicting prognosis: can a prognostic index predict short-term mortality better than experienced nurses do?

OBJECTIVE: To determine whether a prognostic index could predict one-week mortality more accurately than hospice nurses can. METHOD: An electronic health record-based retrospective cohort study of 21,074 hospice patients was conducted in three hospice programs in the Southeast, Northeast, and Midwest United States. Model development used logistic regression with bootstrapped confidence intervals and multiple imputation to account for missing data. The main outcome measure was mortality within 7 days of hospice enrollment. RESULTS: A total of 21,074 patients were admitted to hospice between October 1, 2008 and May 31, 2011, and 5562 (26.4%) died within 7 days. An optimal predictive model included the Palliative Performance Scale (PPS) score, admission from a hospital, and gender. The model had a c-statistic of 0.86 in the training sample and 0.84 in the validation sample, which was greater than that of nurses' predictions (0.72). The index's performance was best for patients with pulmonary disease (0.89) and worst for patients with cancer and dementia (both 0.80). The index's predictions of mortality rates in each index category were within 5.0% of actual rates, whereas nurses underestimated mortality by up to 18.9%. Using the optimal index threshold (<3), the index's predictions had a better c-statistic (0.78 versus 0.72) and higher sensitivity (74.4% versus 47.8%) than did nurses' predictions but a lower specificity (80.6% versus 95.1%). CONCLUSIONS: Although nurses can often identify patients who will die within 7 days, a simple model based on available clinical information offers improved accuracy and could help to identify those patients who are at high risk for short-term mortality.

Which hospice patients with cancer are able to die in the setting of their choice? Results of a retrospective cohort study.

PURPOSE: To determine which hospice patients with cancer prefer to die at home and to define factors associated with an increased likelihood of dying at home. METHODS: An electronic health record-based retrospective cohort study was conducted in three hospice programs in Florida, Pennsylvania, and Wisconsin. Main measures included preferred versus actual site of death. RESULTS: Of 7,391 patients, preferences regarding place of death were determined at admission for 5,837 (79%). After adjusting for other characteristics, patients who preferred to die at home were more likely to die at home (adjusted proportions, 56.5% v 37.0%; odds ratio [OR], 2.21; 95% CI, 1.77 to 2.76). Among those patients (n = 3,152) who preferred to die at home, in a multivariable logistic regression model, patients were more likely to die at home if they had at least one visit per day in the first 4 days of hospice care (adjusted proportions, 61% v 54%; OR, 1.23; 95% CI, 1.07 to 1.41), if they were married (63% v 54%; OR, 1.35; 95% CI, 1.10 to 1.44), and if they had an advance directive (65% v 50%; OR, 2.11; 95% CI, 1.54 to 2.65). Patients with moderate or severe pain were less likely to die at home (OR, 0.56; 95% CI, 0.45 to 0.64), as were patients with better functional status (higher Palliative Performance Scale score: < 40, 64.8%; 40 to 70, 50.2%; OR, 0.79; 95% CI, 0.67 to 0.93; > 70, 40.5%; OR, 0.53; 95% CI, 0.35 to 0.82). CONCLUSION: Increased hospice visit frequency may increase the likelihood of patients being able to die in the setting of their choice.