Palliative Care and Hospice in the Pandemic: A Review of State Planning and Lessons Not Yet Learned.

CONTEXT: Written Crisis Standards of Care guidelines have been published federally in the United States for several decades to assisted in planning for a variety of disasters, and planning documents exist in most states. Federal and state crisis planning guidelines, both before and during the early COVID pandemic, focused on saving the most lives. Palliative care (PC) and hospice shortages were exacerbated by the COVID pandemic but recognized late and incompletely. OBJECTIVES: 1) Quantify the number of state crisis standard planning documents that include recognition of potential PC and hospice crisis needs in a pandemic. 2) Assess the range of practical plans in existing state Crisis Standards of Care plans. 3) Outline elements of recommendations from existing guidelines and literature. METHODS: Internet searches for state-based "crisis standards of care" completed and results categorized regarding PC and hospice planning as: 1) absent, 2) mentioned only in relation to critical care triage, 3) described only in general principles, 4) describing potential concrete plans to address PC and hospice needs. RESULTS: Of the 50 states and Washington, DC, 45 states have electronically available "crisis standards of care" or emergency preparedness documents; 35 of these were written or updated since 2020. Only 20 states mention any concrete aspects of planning for potential palliative care or hospice service shortages. Guidelines most often involved alternate care sites, protective equipment, and specialist resources. Visitation policy was rarely mentioned. CONCLUSIONS: Concrete planning for PC and hospice needs in state crisis planning occurs in less than half of state documents, even three years after the start of this pandemic. Failure to address these needs will result in avoidable suffering for patients in a wide range of settings. It is important to identify and address gaps before the next disaster.

Low Hospice Utilization in New York State: Framework for Compiling and Ranking Barriers.

Background: The hospice benefit can improve end-of-life outcomes, but is underutilized, particularly in low enrollment states such as New York. Little is known about this underutilization. Objective: The first part of a mixed-methods study aimed to compile and rank barriers to hospice utilization and identify differences between New York and the rest of the United States. Setting/Subjects and Design: Clinicians, administrators, and hospice employees participated in six sessions (6-12 per session) across New York State, USA. During each session, a methodology known as nominal group technique was used to elicit barriers to hospice, identify those specific to New York, and suggest interventions to improve access. The analysis involved first categorizing and ranking barriers, and then conducting a thematic analysis of session transcripts to examine barriers specific to New York and proposed interventions to improve utilization. Results: Fifty-seven participants ranked 54 barriers, which were grouped into nine categories. These reflected concerns about clinician knowledge and attitudes or beliefs; patient and family knowledge, attitudes or beliefs, and resources; and both structural elements and practices of hospices, nursing homes, palliative care services, and other entities in the health care system. Thirteen barriers from eight categories were ranked among the top five by ≥10% of participants; only 10 of the 54 were judged to be specific to New York. Thematic analysis highlighted 14 barriers important in New York and suggested 11 interventions to improve hospice access. Conclusions: A categorization and ranking of barriers may guide future interventions to improve low hospice utilization. Novel studies with heterogeneous stakeholders are needed.

Low Hospice Utilization in New York State: Comparisons Using National Data.

CONTEXT: Hospice utilization in New York State (NYS) is low compared to the rest of the U.S. OBJECTIVES: The first part of a mixed-methods study elicited information from New York State stakeholders and identified 54 hospice-related barriers in nine categories, some specific to NYS. This second part used national data to examine the differences between NYS and the rest of the country by evaluating the variables associated with low NYS hospice utilization. METHODS: Ten Medicare or publicly available datasets provided data from the year prior to death for all traditional Medicare-insured patients dying in 2018. Multivariate analyses identified variables independently associated with differences in hospice enrollment or length of stay between NYS and the rest of the country. RESULTS: The NYS population was relatively older, included more women and minorities, had higher socioeconomic status (SES), and saw more physicians during the last two years of life. NYS had more physicians, more skilled nursing facility (SNF) beds, and fewer for-profit hospitals, SNFs, home care agencies, and hospice agencies. In multivariate analyses, lower NYS hospice utilization was associated with higher SES; more physicians seen during the last two years of life; more SNF beds and fewer for-profit SNF facilities; and fewer hospice agencies. CONCLUSION: NYS's low hospice utilization is independently associated with diverse factors, including those related to the health care system. Combined with information from stakeholders, these findings may help target, and inform initiatives to improve hospice utilization.

Use of Hospital Referral Regions in Evaluating End-of-Life Care.

Background: Hospital referral regions (HRRs) are often used to characterize inpatient referral patterns, but it is unknown how well these geographic regions are aligned with variation in Medicare-financed hospice care, which is largely provided at home. Objective: Our objective was to characterize the variability in hospice use rates among elderly Medicare decedents by HRR and county. Methods: Using 2014 Master Beneficiary File for decedents 65 and older from North and South Carolina, we applied Bayesian mixed models to quantify variation in hospice use rates explained by HRR fixed effects, county random effects, and residual error among Medicare decedents. Results: We found HRRs and county indicators are significant predictors of hospice use in NC and SC; however, the relative variation within HRRs and associated residual variation is substantial. On average, HRR fixed effects explained more variation in hospice use rates than county indicators with a standard deviation (SD) of 10.0 versus 5.1 percentage points. The SD of the residual error is 5.7 percentage points. On average, variation within HRRs is about half the variation between regions (52%). Conclusions: The magnitude of unexplained residual variation in hospice use for NC and SC suggests that novel, end-of-life-specific service areas should be developed and tested to better capture geographic differences and inform research, health systems, and policy.

Predicting Length of Hospice Stay: An Application of Quantile Regression.

BACKGROUND: Use of the Medicare hospice benefit has been associated with high-quality care at the end of life, and hospice length of use in particular has been used as a proxy for appropriate timing of hospice enrollment. Quantile regression has been underutilized as an alternative tool to model distributional changes in hospice length of use and hospice payments outside of the mean. OBJECTIVE: To test for heterogeneity in the relationship between patient characteristics and hospice outcomes across the distribution of hospice days. SETTING: Medicare Beneficiary Summary File and survey data (2014) for hospice beneficiaries in North and South Carolina with common terminal diagnoses. MEASUREMENTS: Distributional shifts associated with patient characteristics were evaluated at the 25th and 75th percentiles of hospice days and hospice payments using quantile regressions and compared to the mean shift estimated by ordinary least squares (OLS) regression. PRINCIPAL FINDINGS: Significant (p < 0.001) heterogeneity in the marginal effects on hospice days and costs was observed, with patient characteristics associated with generally larger shifts in the 75th percentile than the 25th percentile. Mean effects estimated by OLS regression overestimate the magnitude of the median marginal effects for all patient characteristics except for race. Results for hospice payments in 2014 were similar. CONCLUSIONS: Methodological decisions can have a meaningful impact in the evaluation of factors influencing hospice length of use or cost.

Will Changes to Medicare Payment Rates Alter Hospice's Cost-Saving Ability?

BACKGROUND: On January 1, 2016, Medicare implemented a new "two-tiered" model for hospice services, with per diem rates increased for days 1 through 60, decreased for days 61 and greater, and service intensity add-on payments made retrospectively for the last seven days of life. OBJECTIVE: To estimate whether the Medicare hospice benefit's potential for cost savings will change as a result of the January 2016 change in payment structure. DESIGN: Analysis of decedents' claims records using propensity score matching, logistic regression, and sensitivity analysis. SETTING/SUBJECTS: All age-eligible Medicare decedents who received care and died in North Carolina in calendar years 2009 and 2010. MEASUREMENTS: Costs to Medicare for hospice and other healthcare services. RESULTS: Medicare costs were reduced from hospice election until death using both 2009-2010 and new 2016 payment structures and rates. Mean cost savings were $1,527 with actual payment rates, and would have been $2,105 with the new payment rates (p < 0.001). Cost savings were confirmed by reducing the number of days used for cost comparison by three days for those with hospice stays of at least four days ($4,318 using 2009-2010 rates, $3,138 for 2016 rates: p < 0.001). Cost savings were greater for males ($3,393) versus females ($1,051) and greatest in cancer ($6,706) followed by debility and failure to thrive ($5,636) and congestive heart failure ($1,309); dementia patients had higher costs (+$1,880) (p < 0.001). When adding 3 days to the comparison period, hospice increased costs to Medicare. CONCLUSIONS: Medicare savings could continue with the 2016 payment rate change. Cost savings were found for all primary diagnoses analyzed except dementia.

Hospital-Based Palliative Care with Medicare Claims: Evidence From Colorado.

BACKGROUND: The prevalence of hospital-based palliative care has been largely anecdotal as an increasing service being provided and there is a need to understand what trends can be analyzed with Medicare data. OBJECTIVE: To compare 2 methods of identifying hospital-based palliative care in the Medicare population in Colorado. STUDY DESIGN: Through Medicare claims data and phone surveys, we ascertained the presence of hospital-based palliative care services, number of patients receiving palliative care, and number of care visits provided during the previous year. DATA SOURCES/STUDY SETTING: Data were collected from every Medicare-certified hospital in Colorado during 2008 and 2013. MEASUREMENTS: We measured the presence of hospital-based palliative care teams and their average number of consultations through a phone survey and cross-referenced using a v-code modifier of Medicare claims indicating a palliative care consult visit. RESULTS: The number of hospital-based palliative care consultations increased five-fold from 2008-2013, and Medicare claims under-counted the number of these consultations compared to phone surveys. CONCLUSION: The systematic measurement of palliative care nationally is a key priority. More evidence is needed from other states to better understand the usefulness of Medicare claims in this effort.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.

Healthcare professional education: a unique role for hospices.

We sought to describe the educational experiences that hospices currently provide for students in health professions by using a national cross-sectional, Web-based survey of the National Hospice and Palliative Care Organization (NHPCO) and the Population-based Palliative Care Research Network (PoPCRN) hospice sites. Of the 75 responding sites, 71 (95 percent) participated in the education of health profession students, most commonly providing education for bachelor of science in nursing students (73 percent), associate's degree nursing students (61 percent), master's-level social work or counseling students (61 percent), registered nursing students (59 percent), medical students (58 percent), and medical residents (57 percent). Significant staff time was devoted to educating these students (averaging 11 to 30 hours/week), but less than 3 percent received any financial compensation. Therefore, we conclude that hospices provide a significant amount of uncompensated education. This conclusion provides a unique opportunity for hospices to collaborate with healthcare educational institutions and to influence the work force of the future.

Barriers to effective symptom management in hospice.

The barriers to effective symptom management in hospice are not well described. We surveyed nurses of hospices affiliated with the Population-based Palliative Care Research Network (PoPCRN) to identify barriers to the effective management of common symptoms in terminally ill patients. 867/1710 (51%) nurses from 67 hospices in 25 U.S. States returned surveys. Of 32 symptoms, nurses reported agitation (45%), pain (40%), and dyspnea (34%) as the 'most difficult to manage.' The most common perceived barriers to effective symptom management were inability of family care providers to implement or maintain recommended treatments (38%), patients or families not wanting recommended treatments (38%), and competing demands from other distressing symptoms (37%). Patterns of barriers varied by symptom. These nurses endorsed multiple barriers contributing to unrelieved symptom distress in patients receiving hospice care. Interventions to improve symptom management in hospice may need to account for these differing barrier patterns.

Hospice pharmaceutical cost trends.

Hospices are required to provide pharmaceuticals under the Medicare Hospice Benefit. Since there are no data describing these costs for hospice programs, this study analyzes data from a cross-sectional survey of 34 hospices concerning their pharmaceutical cost trends. Most respondents reported higher pharmaceutical-related costs between 1998 and 2002, but a significant minority reported that their costs had decreased. Pharmaceutical costs varied by patient setting, but long-acting opioids and continuous-infusion delivery systems were the two most significant contributors. A variety of mechanisms were employed to control drug costs.

Outcomes and characteristics of patients discharged alive from hospice.

OBJECTIVES: To describe outcomes and characteristics of patients discharged alive from hospice. DESIGN: Prospective cohort study using a telephone survey. SETTING: Hospices (n=18) participating in the Population-Based Palliative Care Research Network during the 1-year study period. PARTICIPANTS: English-speaking adults (n=164) who were discharged alive from participating hospices during the 1-year study period. MEASUREMENTS: Mortality within 6 months of hospice discharge. RESULTS: Thirty-five percent (n=48) of the 139 patients with known outcomes died within 6 months of hospice discharge, 15 of whom (31%) died without hospice readmission. There were no significant associations between sex (P=.77), length of hospice service (P=.99), diagnosis (P=.73), discharge disposition (P=.54), admission evidence of prognosis of less than 6 months to live (P=.22-.95), Karnofsky score at admission or change between admission and discharge (P=.39, P=.38, respectively), or duration of hospice care after stabilization (P=.83) and mortality within 6 months after hospice discharge. Age (P=.11), discharge Karnofsky score (P=.17), and reason for discharge being improved or stabilized condition (P=.13) trended toward statistical significance. The strongest predictor of mortality after hospice discharge was a report that the patient's condition had worsened (hazard ratio=10.2, 95% confidence interval 4.5-23.4). CONCLUSION: One-third of patients who were discharged from hospice died within 6 months of hospice discharge, indicating ongoing eligibility for hospice care even under the strictest interpretation of hospice eligibility criteria. Patients who are discharged from hospice care should be evaluated frequently, especially within the first weeks to months after discharge, for changes in status, unmet needs, and potential hospice readmission.

Current use of guidelines, protocols, and care pathways for symptom management in hospice.

Evidence-based guidelines or care pathways for symptom management could provide a means to reduce symptom distress in dying patients. We surveyed directors of nursing from hospices affiliated with the Population-based Palliative Care Research Network (PoPCRN) regarding their hospices' current use of and attitudes toward written symptom management materials. A majority (53/78, 68 percent) of participating hospices reported use of written materials, such as guidelines, protocols, or care pathways, for one or more symptoms. Materials were based on multiple sources and varied from simple medication orders to more comprehensive, multicategory symptom management resources. Regardless of the composition, these materials were perceived as helpful. Given this favorable view, variations in the use and content of written materials may signify an opportunity to decrease symptom distress in hospice through the implementation of evidence-based symptom management resources.

Recruiting for research in hospice: feasibility of a research screening protocol.

BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify patients who are interested in participating in research and who can then be approached directly. The goal of this study was to evaluate the feasibility of this strategy for identifying hospice patients who are interested in research participation. DESIGN: Cross-sectional survey. SETTING/ SUBJECTS: Patients and their families who had enrolled in one of two community-based hospice programs. MEASUREMENTS: Three screening questions (for survey-based research, clinical trials and family- focused research) were integrated into the intake process of two community-based hospice organizations. RESULTS: Of the 214 patients who were able to respond, 54% indicated willingness to be approached about survey-based research, 40% were willing to be approached for clinical trials and 65% were willing to be approached for family-focused research. CONCLUSIONS: These results suggest that screening questions may be useful in identifying hospice patients who are willing to be recruited for research. Further study is needed to define the likelihood that these patients will consent and whether these screening questions introduce selection bias in the recruitment process.

Confirmation of the "disability paradox" among hospice patients: preservation of quality of life despite physical ailments and psychosocial concerns.

OBJECTIVE: The purpose of this study was to describe quality of life (QOL) and psychosocial and spiritual issues among patients receiving hospice care. METHODS: A questionnaire addressing QOL, spirituality, optimism, loss, fears about the terminal process and death anxiety was administered to 66 adults receiving care from 14 hospices. The physical components of QOL (physical symptoms and physical well-being) were rated lower than the psychosocial and spiritual aspects (support, existential well-being, psychological symptoms). RESULTS: Respondents had a strong spiritual connection and a strong sense of hope. Although these individuals did not express anxiety or fear about death, there were concerns about the dying process itself. Also, although most felt at ease with their current situation, respondents were concerned about how their illness was affecting their family. Financial and legal issues did not concern most of these individuals. SIGNIFICANCE OF RESULTS: There were few significant associations between patient characteristics and the QOL or other psychosocial or spiritual issues addressed. Among this older terminally ill population receiving hospice care, whose functional status was fair and for whom physical symptoms were troublesome, QOL persisted and a positive outlook prevailed.

Estimation of confusion prevalence in hospice patients.

BACKGROUND: Confusion is common among ill patients and has broad consequences for their care and well-being. The prevalence of confusion in hospice patients is unknown. OBJECTIVES: Describe the prevalence, severity, and manifestations of nurse-identified confusion and estimate the prevalence of delirium in hospice patients. DESIGN: Cross-sectional descriptive study. SETTING: Nineteen hospices in the Population-based Palliative Care Research Network (PoPCRN). PATIENTS: Adult patients receiving care from participating hospices, February 15 to April 1, 2000. MEASUREMENT/ANALYSIS: Hospice nurses estimated prevalence, severity, behavioral manifestations, and consequences of confusion during the preceding week. Confused and nonconfused patients were compared using standard bivariate and stratification techniques. Logistic regression identified manifestations associated with problematic confusion. RESULTS: Median age of the 299 patients was 78 years; 59% were female, 52% lived at home, and cancer was the most common diagnosis (54%). Fifty percent were confused during the preceding week, 36% of those were severely confused or disabled by confusion. Compared with nonconfused patients, confused patients were less likely to have cancer (64% vs. 43%, p < or = 0.001) and more likely to live in nursing home/assisted living (21% vs. 33%, p < or = 0.01). Disorientation to time or place, impaired short-term memory, drowsiness, and easy distractibility were common manifestations of confusion. When present, confusion caused a problem for the patient, someone else, or both 79% of the time. Inappropriate mood, cancer diagnosis, agitation, and age were the variables predicting problematic confusion. Only 14% of confused patients met criteria for delirium. CONCLUSIONS: Confusion among hospice patients was common, frequently severe, and usually problematic.