Increasing inpatient hospice use versus patient preferences in the USA: are patients able to die in the setting of their choice?

BACKGROUND: Growth in hospice utilisation has been accompanied by an increase in the proportion of hospice patients who die in an inpatient hospice setting rather than at home. OBJECTIVE: To determine whether this increase in inpatient utilisation is consistent with patient preferences. DESIGN: Retrospective cohort study. SETTING: Seven hospices in the Coalition of Hospices Organised to Investigate Comparative Effectiveness (CHOICE) network. PATIENTS: 70 488 patients admitted between 1 July 2008 and 31 May 2012. MEASUREMENTS: We measured changes in patients' stated preferences at the time of admission regarding site of death, including weights to adjust for non-response bias. We also assessed patients' actual site of death and concordance with patients' preferences. RESULTS: More patients died receiving inpatient care in 2012 as compared to 2008 (1920 (32.7%), 2537 (18.5%); OR 1.21; 95% CI 1.19 to 1.22; p<0.001). However, patients also expressed an increasing preference for dying in inpatient settings (weighted preferences 27.5% in 2012 vs 7.9% in 2008; p<0.001). The overall proportion of patients who died in the setting of their choice (weighted preferences) increased from 74% in 2008 to 78% in 2012 (p<0.001). LIMITATIONS: This study included only seven hospices, and results may not be representative of the larger hospice population. CONCLUSIONS: Although more patients are dying while receiving inpatient care, these changes in site of death seem to reflect changing patient preferences. The net effect is that patients in this sample were more likely to die in the setting of their choice in 2012 than they were in 2008.

Interdisciplinary Team Care and Hospice Team Provider Visit Patterns during the Last Week of Life.

BACKGROUND: Hospice provides intensive end-of-life care to patients and their families delivered by an interdisciplinary team of nurses, aides, chaplains, social workers, and physicians. Significant gaps remain about how team members respond to diverse needs of patients and families, especially in the last week of life. OBJECTIVE: The study objective was to describe the frequency of hospice team provider visits in the last week of life, to examine changes in frequency over time, and to identify patient characteristics that were associated with an increase in visit frequency. DESIGN: This was a retrospective cohort study using electronic medical record data. SETTING/SUBJECTS: From U.S. not-for-profit hospices, 92,250 records were used of patients who died at home or in a nursing home, with a length of stay of at least seven days. MEASUREMENTS: Data included basic demographic variables, diagnoses, clinical markers of illness severity, patient functioning, and number of hospice team member visits in the last seven days of life. RESULTS: On average the total number of hospice team member visits in the last week of life was 1.36 visits/day. Most were nurse visits, followed by aides, social workers, and chaplains. Visits increased over each day on average across the last week of life. Greater increase in visits was associated with patients who were younger, male, Caucasian, had a spouse caregiver, and shorter lengths of stay. CONCLUSIONS: This study provides important information to help hospices align the interdisciplinary team configuration with the timing of team member visits, to better meet the needs of the patients and families they serve.

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.

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.