US hospice industry experienced considerable turbulence from changes in ownership, growth, and shift to for-profit status.

The US hospice industry, which provides palliative and supportive care to patients with terminal illness, has undergone substantial changes during the last decade. The magnitude of these changes has not been fully captured in previous studies or reports. In this longitudinal study of hospices active in Medicare during 1999-2009, we analyzed Provider of Services files to understand key shifts in the industry. We found evidence of substantial turbulence. One-fifth of Medicare-certified hospices active in 1999 had closed or withdrawn from the program by 2009, and more than 40 percent had experienced one or more changes in ownership. The most prominent trend was the shift in ownership type from nonprofit to for-profit ownership. Four out of five Medicare-certified hospices that entered the marketplace between 2000 and 2009 were for-profit. Hospices also became larger, as the proportion with 100 or more full-time employees doubled to 5 percent from 1999 to 2009. Although each of the Census regions had more hospices in 2009 than in 1999, the geographic distribution of hospices in the country changed, with proportionally more in the South and West. The impact of all of these changes on cost and quality of hospice care, as well as patient access, remains a critical area for future research.

Caring for grieving family members: results from a national hospice survey.

BACKGROUND: A founding principle of hospice is that the patient and family is the unit of care; however, we lack national information on services to family members. Although Medicare certification requires bereavement services be provided, reimbursement rates are not tied to the level or quality of care; therefore, limited financial incentives exist for hospice to provide more than a minimal benefit. OBJECTIVES: To assess the scope and intensity of services provided to family members by hospice. RESEARCH DESIGN: We fielded a national survey of hospices between September 2008 and November 2009. PARTICIPANTS: A national sample of US hospices with an 84% response rate (N=591). MEASURES: Bereavement services to the family, bereavement services to the community, labor-intensive family services, and comprehensive family services. RESULTS: Most hospices provided bereavement services to the family (78%) and to the community (76%), but only a minority of hospices provided labor-intensive (23%) or comprehensive (27%) services to grieving family members. Larger hospice size was positively and significantly associated with each of the 4 measures of family services. We found no significant difference in provision of bereavement services to the family, labor-intensive services, or comprehensive services by ownership type; however, nonprofit hospices were more likely than for-profit hospices to provide bereavement services to the community. CONCLUSIONS: Our results show substantial diversity in the scope and intensity of services provided to families of patients with terminal illnesses, suggesting a need for clearer guidance on what hospices should provide to exemplify best practices. Consensus within the field on more precise guidelines in this area is essential.

Skilled nursing facility referral and hospital readmission rates after heart failure or myocardial infarction.

BACKGROUND: Substantial hospital-level variation in the risk of readmission after hospitalization for heart failure (HF) or acute myocardial infarction (AMI) has been reported. Prior studies have documented considerable state-level variation in rates of discharge to skilled nursing facilities (SNFs), but evaluation of hospital-level variation in SNF rates and its relationship to hospital-level readmission rates is limited. METHODS: Hospital-level 30-day all-cause risk-standardized readmission rates (RSRRs) were calculated using claims data for fee-for-service Medicare patients hospitalized with a principal diagnosis of HF or AMI from 2006-2008. Medicare claims were used to calculate rates of discharge to SNF following HF-specific or AMI-specific admissions in hospitals with ≥25 HF or AMI patients, respectively. Weighted regression was used to quantify the relationship between RSRRs and SNF rates for each condition. RESULTS: Mean RSRR following HF admission among 4101 hospitals was 24.7%, and mean RSRR after AMI admission among 2453 hospitals was 19.9%. Hospital-level SNF rates ranged from 0% to 83.8% for HF and from 0% to 77.8% for AMI. No significant relationship between RSRR after HF and SNF rate was found in adjusted regression models (P=.15). RSRR after AMI increased by 0.03 percentage point for each 1 absolute percentage point increase in SNF rate in adjusted regression models (P=.001). Overall, HF and AMI SNF rates explained <1% and 4% of the variation for their respective RSRRs. CONCLUSION: SNF rates after HF or AMI hospitalization vary considerably across hospitals, but explain little of the variation in 30-day all-cause readmission rates for these conditions.

Quality of palliative care at US hospices: results of a national survey.

BACKGROUND: The National Quality Forum (NQF) identified hospice services as a national priority area for health care quality improvement and endorsed a set of preferred practices for quality palliative and hospice care. This study reports the first national data regarding hospices' self-reported implementation of the NQF preferred practices and identifies hospice characteristics associated with more comprehensive implementation. METHODS: We conducted a national cross-sectional survey of a random sample of hospices (n=591; response rate, 84%) from September 2008 to November 2009. We evaluated the reported implementation of NQF preferred practices in the care of both patients and families. RESULTS: The range of reported implementation of individual NQF preferred practices among hospices was 45% to 97%. Twenty-one percent of hospices reported having implemented all patient-centered preferred practices, 26% all family-centered preferred practices, and 10% all patient and family-centered preferred practices. In adjusted analyses, large hospices (100 or more patients per day) were significantly more likely than small hospices (<20 patients per day) to report having implemented all patient-centered preferred practices [odds ratio (OR)=2.46; 95% CI, 1.24, 4.90] and all family-centered preferred practices (OR=1.88; 95% CI, 1.02, 3.45). Similarly, chain-affiliated hospices were significantly more likely than free-standing hospices to report having implemented all patient-centered preferred practices (OR=2.45; 95% CI, 1.23, 4.87) and all family-centered preferred practices (OR=1.85; 95% CI, 1.01, 3.41). CONCLUSIONS: Hospices' reported implementation of individual preferred practices for palliative and hospice care quality was high; however, reported comprehensive implementation of preferred practices was rare and may be difficult to achieve for small, free-standing hospices.

The effect of comorbidity burden on health care utilization for patients with cancer using hospice.

BACKGROUND: The treatment of patients with advanced cancer with multiple comorbid illnesses is complex. Although an increasing number of such patients are being referred to hospice, the comorbidity burden of this patient population is largely unknown but has implications for the complexity of care provided by hospices. This study reports the comorbidity burden in a national sample of hospice users with cancer and estimates the effect of higher comorbidity on health care use and site of death. METHODS: Cross-sectional study using Surveillance, Epidemiology and End Results-Medicare data for hospice users who died of cancer in 2002 (N = 27,166). We measured comorbidity burden using the Charlson comorbidity index and used multivariable generalized estimating equations to estimate the association between comorbidity burden and the following outcomes: emergency department and intensive care unit (ICU) admission, hospitalization, hospice disenrollment, and hospital death. RESULTS: Patients with cancer who used hospice had an average Charlson comorbidity index value of 1.24, including 18.8% who suffered from comorbid dementia. In analyses adjusted for patient demographics, site of primary cancer, and number of days with hospice, higher comorbidity burden was associated with higher likelihood of emergency department admission (odds ratio [OR] = 1.69, 95% confidence interval [CI] 1.52, 1.87), ICU admission (OR = 3.28, 95% CI 2.45, 4.38), inpatient hospitalization (OR = 2.14, 95% CI 1.90, 2.42), hospice disenrollment (OR = 1.41, 95% CI 1.29, 1.56) and hospital death (OR = 2.51, 95% CI 2.08, 3.02). CONCLUSION: These findings underscore the complexity of the hospice patient population and highlight a potential need to risk adjust the per diem hospice reimbursement rates to account for increased resource requirements for hospices serving patients with higher comorbidity burden.

Strategies and innovative models for delivering palliative care in nursing homes.

The goals of palliative care address critical issues for individuals with complex and serious illness residing in nursing homes, including pain and symptom management, communication, preparation for death, decisions about treatment preferences, and caregiver support. Because of the uncertain prognosis associated with chronic nonmalignant diseases such as dementia, many nursing home residents are either not referred to hospice or have very short or very long hospice stays. The integration of palliative care into nursing homes offers a potential solution to the challenges relating to hospice eligibility, staffing, training, and obtaining adequate reimbursement for care that aligns with resident and surrogate's preferences and needs. However, the delivery of palliative care in nursing homes is hindered by both regulatory and staffing barriers and, as a result, is rare. In this article, we draw on interviews with nursing home executives, practitioners, and researchers to describe the barriers to nursing home palliative care. We then describe 3 existing and successful models for providing nonhospice palliative care to nursing home residents and discuss their ongoing strengths and challenges. We conclude with specific policy proposals to expedite the integration of palliative care into the nursing home setting.

Geographic access to hospice in the United States.

BACKGROUND: Despite a 41% increase in the number of hospices since 2000, more than 60% of Americans die without hospice care. Given that hospice care is predominantly home based, proximity to a hospice is important in ensuring access to hospice services. We estimated the proportion of the population living in communities within 30 and 60 minutes driving time of a hospice. METHODS: We conducted a cross-sectional study of geographic access to U.S. hospices using the 2008 Medicare Provider of Services data, U.S. Census data, and ArcGIS software. We used multivariate logistic regression to identify gaps in hospice availability by community characteristics. RESULTS: As of 2008, 88% of the population lived in communities within 30 minutes and 98% lived in communities within 60 minutes of a hospice. Mean time to the nearest hospice was 15 minutes and the range was 0 to 403 minutes. Community characteristics independently associated with greater geographic access to hospice included higher population density, higher median income, higher educational attainment, higher percentage of black residents, and the state not having a Certificate of Need policy. The percentage of each state's population living in communities more than 30 minutes from a hospice ranged from 0% to 48%. CONCLUSIONS: Recent growth in the hospice industry has resulted in widespread geographic access to hospice care in the United States, although state and community level variation exists. Future research regarding variation and disparities in hospice use should focus on barriers other than geographic proximity to a hospice.

Impact of hospice disenrollment on health care use and medicare expenditures for patients with cancer.

PURPOSE: Patients with cancer represent the largest diagnostic group of hospice users, with 560,000 referred for hospice in 2008. Oncologists rely on hospice teams to provide care for patients who have completed disease-directed treatment and desire to remain at home. However, 11% to 15% of hospice users disenroll from hospice, and little is known about their health care use and Medicare expenditures. PATIENTS AND METHODS: We used Surveillance, Epidemiology and End Results-Medicare data for hospice users who died as a result of cancer between 1998 and 2002 (N = 90,826) to compare rates of hospitalization, emergency department, and intensive care unit admission and hospital death for hospice disenrollees and those who remained with hospice until death. We also compared per-day and total Medicare expenditures across the two groups. RESULTS: Patients with cancer who disenrolled from hospice were more likely to be hospitalized (39.8% v 1.6%; P < .001), more likely to be admitted to the emergency department (33.9% v 3.1%; P < .001) or intensive care unit (5.7% v 0.1%; P < .001), and more likely to die in the hospital (9.6% v 0.2%; P < .001). Patients who disenrolled from hospice died a median of 24 days following disenrollment, suggesting that the reason for hospice disenrollment was not improved health. In multivariable analyses, hospice disenrollees incurred higher per-day Medicare expenditures than patients who remained with hospice until death (higher per-day expenditures of $124; P < .001). CONCLUSION: Hospice disenrollment is a marker for higher health care use and expenditures for care. Strategies to manage a patient's care and support family caregivers following hospice disenrollment may be beneficial and should be explored.

Interdisciplinary staffing patterns: do for-profit and nonprofit hospices differ?

BACKGROUND: Interdisciplinary care is fundamental to the hospice philosophy and is a key component of high-quality hospice care. However, little is known about how hospices differ in their interdisciplinary staffing patterns, particularly across nonprofit and for-profit hospices. The purpose of this study was to examine potential differences in the staffing patterns of for-profit and nonprofit hospices. SUBJECTS AND DESIGN: Using the 2006 Medicare Provider of Services (POS) survey, we conducted a cross-sectional analysis of staffing patterns within Medicare-certified hospices operating in the United States in 2006. In bivariate and multivariable analyses, we examined differences in staffing patterns measured by the existence of a full range of interdisciplinary staff (defined as having at least 1 full-time equivalent (FTE) staff in each of 4 disciplines ascertained by the survey: physician, nursing, psychosocial, and home health aide) and by the professional mix of staff within each discipline. RESULTS: For-profit hospices had a winder range of paid staff but there were no differences by ownerships when volunteer staff were included. For-profit hospices had significantly fewer registered nurse FTEs as a proportion of nursing staff, fewer medical social worker FTEs as a proportion of psychosocial staff, and fewer clinician FTEs as a proportion of total staff (p values <0.05). Compared to nonprofit hospices, for-profit and government-owned hospices also used proportionally fewer volunteer FTEs. CONCLUSIONS: Hospice staffing patterns differed significantly by ownership type. Future research should evaluate the impact of these differences on quality of care and satisfaction among patients and families using hospice.

Raising the standard: palliative care in nursing homes.

More than two-thirds of long-stay nursing home residents suffer from dementia. This illness has a variable and unpredictable course that renders it a poor fit for the six-month life-expectancy requirement of the Medicare hospice benefit. Palliative care-a form of treatment that strives to match care to patient goals, relieve pain, and improve quality of life for people with chronic or life-threatening illnesses-should be the standard of practice for all elderly dementia patients in nursing homes, regardless of prognosis. Similar principles could apply to other long-term residents with underlying chronic diseases who would benefit from palliative care. Indeed, we would argue that the growing acceptance of the culture-change movement centered on elder-directed goals in nursing homes is promising evidence of the goodness-of-fit of palliative care principles in the long-term care setting.

Benefits and challenges in use of a standardized symptom assessment instrument in hospice.

BACKGROUND: Hospices are now mandated to perform routine quality assessment under the final Medicare Hospice Conditions of Participation, creating an opportunity to explore standardized approaches to monitoring hospice quality. OBJECTIVE: We report hospice staff experiences using a standardized symptom assessment instrument, the Edmonton Symptom Assessment System (ESAS), in a pilot study designed to develop and test quality measures on symptom management. Use of the ESAS illustrates the benefits and challenges arising with standardized symptom assessment for quality monitoring in hospice. METHODS: We interviewed 24 individuals representing 8 hospices involved with the National Association for Home Care & Hospice Quality Assessment Collaborative, which pilot tested the ESAS as a source of standardized data for quality assessment. Transcripts were analyzed using the constant comparative method. RESULTS: Participants reported benefits and challenges with the ESAS. Benefits were that the ESAS was a brief and easy tool that identified areas of concern, engaged patients in symptom assessment, and monitored symptom changes over time. Additionally, the ESAS was viewed as a useful teaching tool for less experienced staff. Challenges included lack of clarity about inclusion rules and frequency of assessments; difficulty interpreting the numeric symptom rating scale, difficulty incorporating patient preferences with symptoms, and a sense that the use of standard assessment instruments was "unnatural." DISCUSSION: Recommendations to promote effective use of ESAS data for quality monitoring of hospice care include standardizing implementation procedures, adding patients' preferences to the ESAS form, and staff education to enhance comfort with the instrument before implementation.

Hospice characteristics and the disenrollment of patients with cancer.

OBJECTIVE: To characterize the types of hospices with higher rates of patient disenrollment from the Medicare Hospice Benefit and the markets in which these hospices operate. DATA SOURCE: Secondary analyses of Surveillance, Epidemiology and End Results-Medicare data. Analyses included patients who died of cancer from 1998 to 2002 and who used hospice (n=90,826). STUDY DESIGN: We used generalized estimating equations to estimate the association of patient disenrollment with hospice size, years since Medicare certification, ownership, staff mix, competition, urban/rural status, region, and fiscal intermediary. Other covariates included patient demographic and clinical characteristics. PRINCIPAL FINDINGS: Patients were more likely to disenroll from hospice if they were served by newer hospices (OR=1.14; 95 percent CI 1.03, 1.26), by smaller hospices (OR=1.11; 95 percent CI 1.02, 1.20), or by hospices in more competitive markets (OR=1.17; 95 percent CI 1.03, 1.35). There was an independent effect of the hospice's fiscal intermediary on disenrollment, particularly disenrollment after 6 months with hospice (Wald chi(2)=21.2, p=.007). CONCLUSIONS: The reasons for higher disenrollment rates for newer hospices, for smaller hospices, and for hospices in highly competitive markets are likely complex; however, results suggest that there are organizational-level barriers to keeping patients with cancer enrolled with hospice. Variation across fiscal intermediaries may indicate that regulatory oversight, particularly of long-stay patients, influences hospice disenrollment.

Regulating palliative care: the case of hospice.

Palliative care services provided to patients and families vary substantially across hospices. Literature suggests regulation can act as a standardizing force in health care delivery. However, little is known about the effect of regulation on the delivery of palliative care in hospice and whether its effect differs for different types of hospice providers. We estimated the association between regulation, defined as Medicare hospice certification, and the delivery of palliative care in hospice using a nationally representative data set of 9,409 patients from 2,066 hospices surveyed in the National Home and Hospice Care Survey, 1992-2000. Using multivariable analysis, we found Medicare hospice certification was associated with a significantly broader range of services provided to patients (odds ratio [OR]=2.45; 95% confidence interval [CI]: 1.16, 5.17). This effect was significantly more pronounced (P-value for interaction=0.001) among for-profit hospices (OR=15.24; 95% CI: 4.06, 57.17) than among nonprofit hospices (OR=1.53; 95% CI: 0.75, 3.14). The effect of ownership on certification differences was most apparent for the provision of skilled nursing (prevalence difference in difference=52.4%), spiritual care (prevalence difference in difference=49.6%), and social services (prevalence difference in difference=48.1%). This study is the first to demonstrate the substantial association between the regulation of hospices and the provision of a multidisciplinary range of services to patients and families. It provides valuable insights regarding the potential role of regulation in standardizing the quality of palliative care across the increasingly diverse palliative care programs developing outside of hospice.

Improving access to hospice care: informing the debate.

The most frequently cited policy solution for improving access to hospice care for patients and families is to expand hospice eligibility criteria under the Medicare Hospice Benefit. However, the substantial implications of such a policy change have not been fully articulated or evaluated. This paper seeks to identify and describe the implications of expanding Medicare Hospice Benefit eligibility on the nature of hospice care, the cost of hospice care to the Medicare program, and the very structure of hospice and palliative care delivery in the United States. The growth in hospice has been dramatic and the central issue facing policymakers and the hospice industry is defining the appropriate target population for hospice care. As policymakers and the hospice industry discuss the future of hospice and potential changes to the Medicare Hospice Benefit, it is critical to clearly delineate the options--and the implications and challenges of each option--for improving access to hospice care for patients and families.

Hospice care: what services do patients and their families receive?

OBJECTIVE: To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered. DATA SOURCE: Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey. STUDY DESIGN: Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support. DATA COLLECTION: Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review. PRINCIPLE FINDINGS: In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio=1.10, 95 percent confidence interval 1.01-1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low. CONCLUSIONS: Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families.

Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study.

OBJECTIVE: Although more people are using hospice than ever before, the average length of hospice enrollment is decreasing. Little is known about the effect of hospice length of enrollment on surviving family caregivers. The authors examine the association between patient length of hospice enrollment and major depressive disorder (MDD) among the surviving primary family caregivers 13 months after the patient's death. METHODS: The authors conducted a three-year longitudinal study of 175 primary family caregivers of patients with terminal cancer who consecutively enrolled in the participating hospice from October 1999 through September 2001. Interviews were conducted with the primary family caregiver when the patient first enrolled with hospice and again 13 months after the patient's death. The authors used multivariate logistic regression models to estimate caregivers' adjusted risk at 13 months postloss for MDD, assessed using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (SCID). RESULTS: The effect of very short hospice length of enrollment (three days or less) compared with longer lengths of enrollment on caregiver MDD 13 months after their loss was nonsignificant in unadjusted analyses. The adjusted risk of MDD was significantly elevated for caregivers of patients who had very short hospice enrollments (adjusted odds ratio: 8.76, 95%confidence interval: 1.09-70.19) only after adjusting for baseline MDD, caregiver gender, caregiver age, kinship relationship to patient, caregiver education, caregiver chronic conditions, and caregiver burden. The adjustment for caregiver burden resulted in the greatest increase in odds ratio for very short hospice length of enrollment on risk of caregiver MDD 13 months after the loss. CONCLUSIONS: This study identifies a potential target group of family caregivers, characterized by hospice length of enrollment and several caregiver features, who might be most in need of mental health interventions.

From adversary to partner: have quality improvement organizations made the transition?

OBJECTIVE: To describe the perceived impact of the Centers for Medicare and Medicaid Services Quality Improvement Organizations (QIOs) on quality of care for patients hospitalized with acute myocardial infarction, in the context of new efforts to work more collaboratively with hospitals in the pursuit of quality improvement. DATA SOURCE: Primary data collected from a national random sample of 105 hospital quality management directors interviewed between January and July 2002. STUDY DESIGN: We interviewed quality management directors concerning their interactions with the QIO interventions, the helpfulness of QIO interventions and the degree to which they helped or hindered their hospital quality efforts, and their recommendations for improving QIO effectiveness. PRINCIPLE FINDINGS: More than 90% of hospitals reported that their QIO had initiated specific interventions, the most common being the provision of educational materials, benchmark data, and hospital performance data. Many respondents (60%) rated most QIO interventions as helpful or very helpful, although only one-quarter of respondents believed quality of care would have been worse without the QIO interventions. To increase QIO efficacy, respondents recommended that QIOs appeal more directly to senior administration, target physicians (not just hospital employees), and enhance the perceived validity and timeliness of data used in quality indicators. CONCLUSIONS: Our study demonstrates that the QIOs have overcome, to some degree, the previously adversarial and punitive roles of Peer Review Organizations with hospitals. The generally positive view among most hospital quality improvement directors concerning the QIO interventions suggests that QIOs are potentially poised to take a leading role in promoting quality of care. However, the full potential of QIOs will likely not be realized until QIOs are able to engender greater engagement from senior hospital administration and physicians.