US Hospice Research Articles

Caregiver and Employee Experience Among Big Hospices-Ranking of the Largest US Hospices by Three Quality Indicators.

Several studies chronicle profit-making negatively impacting US hospice care quality. However, no study has reported on caregiver satisfaction expressed online by hospice. Assess the relationship between online caregiver sentiment, market share, profit status, and Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores among the 50 largest US hospices. Retrospective mixed methods of sentiment and multivariate regression analysis. Data sources were online caregiver reviews, provider CAHPS hospice survey data. Being a larger, for-profit predicted diminished caregiver and employee satisfaction. Caregiver Sentiment and CAHPS Composite were so highly associated (r = .862, P < .001), that they are converging on overall caregiver satisfaction. With large effect, CAHPS Star Rating was significantly higher than Review Star Rating. For-profits had significantly higher overall Emotional Intensity than non-profit hospices, again with large effect. Caregiver Sentiment, Review Star Rating, and Glassdoor Composite each predicted CAHPS Composite. Lack of staffing was more frequent among for-profits (13%) than non-profits (6%). Out-of-scope expectations prevalence was 9%. Caregiver and employees had better experiences with non-profits than for-profits. Anger and frustration was expressed toward large, for-profit providers more focused on admissions, profiteering, and paying dividends than actual care. The CAHPS appears to draw more satisfied caregivers. Whereas, online reviewing provides open-ended, real-time voicing of care quality concerns. Even with distinct methods, CAHPS survey and review sentiment analysis converge on caregiver satisfaction, yet CAHPS paints a much rosier picture of hospice quality than online reviews. Future research should explore sentiments by topic and hospice to increase customer advocacy.

Changes in Diagnoses and Site of Care for Patients Receiving Hospice Care From Agencies Acquired by Private Equity Firms and Publicly Traded Companies

Private equity firms and publicly traded companies have been acquiring US hospice agencies; an estimated 16% of US hospice agencies are owned by private equity (PE) firms or publicly traded companies (PTC). To examine the association of PE and PTC acquisitions of hospices with Medicare patients' site of care and clinical diagnoses. This cohort study of US hospice agencies used a novel national database of acquisitions merged with the Medicare Post-Acute Care and Hospice Public Use File for 2013 to 2020. Changes in sites of care and patient characteristics for hospice agencies acquired by PE or PTCs were compared with changes for patients in nonacquired for-profit hospice agencies. Private equity and publicly traded company acquisitions. This study used a difference-in-differences approach within an event-study framework to examine the association of PE and PTC acquisitions of hospice agencies with changes in patient diagnoses and sites of care. Dependent variables were annual hospice-level measures of the Hierarchical Condition Category (HCC) score and proportion of patients diagnosed with cancer or dementia. Sites of care included the proportion of patients receiving hospice care in their personal home, nursing home, or assisted living facility. A total of 158 hospice agencies acquired by PEs, 250 acquired by PTCs, and 1559 other for-profit hospice agencies were included. Preacquisition, hospice agencies that would later be acquired by PE or PTC served a mean (IQR) 30.1% (12.0%-44.0%) and 29.4% (13.0%-43.0%) of their patients in nursing homes respectively, a greater proportion compared with the 27.1% (8.0%-43.8%) served by for-profit hospices that were never acquired. Agencies acquired by PE between 2014 and 2019 saw a significant relative increase of 5.98% in dementia patients (1.38 percentage points; 95% CI, 0.35-2.40 percentage points; P = .008). In PTC-owned hospices, the proportion of patients receiving care at home increased by 5.26% (2.98 percentage points; 95% CI, 1.46-4.51 percentage points; P < .001), the proportion of dementia patients rose by 13.49% (3.11 percentage points; 95% CI, 2.14-4.09 percentage points; P < .001), and the HCC score decreased by 1.37% (-3.19 percentage points; 95% CI, -5.92 to -0.47 percentage points; P = .02). These findings suggest that PE and PTCs select patients and sites of care to maximize profits.

Choosing Hospice is Not Giving Up

Choosing Hospice is Not Giving Up

Overall US Hospice Quality According to Decedent Caregivers-Natural Language Processing and Sentiment Analysis of 3389 Online Caregiver Reviews.

Objectives: With an untapped quality resource in online hospice reviews, study aims were exploring hospice caregiver experiences and assessing their expectations of the hospice Medicare benefit. Methods: Topical and sentiment analysis was conducted using natural language processing (NLP) of Google and Yelp caregiver reviews (n = 3393) between 2013-2023 using Google NLP. Stratified sampling weighted by hospice size to approximate the daily census of US hospice enrollees. Results: Overall caregiver sentiment of hospice care was neutral (S = .14). Therapeutic, achievable expectations and misperceptions, unachievable expectations were, respectively, the most and least prevalent domains. Four topics with the highest prevalence, all had moderately positive sentiments: caring staff, staff professionalism and knowledge; emotional, spiritual, bereavement support; and responsive, timely or helpful. Lowest sentiments scores were lack of staffing; promises made, but not kept, pain, symptoms and medications; sped-up death, hasted, or sedated; and money, staff motivations. Significance of Results: Caregivers overall rating of hospice was neutral, largely due to moderate sentiment on achievable expectations in two-thirds of reviews mixed with unachievable expectations in one-sixth of reviews. Hospice caregivers were most likely to recommend hospices with caring staff, providing quality care, responsive to requests, and offering family support. Lack of staff, inadequate pain-symptom management were the two biggest barriers to hospice quality. All eight CAHPS measures were found in the discovered review topics. Close-ended CAHPS scores and open-ended online reviews have complementary insights. Future research should explore associations between CAHPS and review insights.

Associations Between Certificate of Need Policies and Hospice Quality Outcomes.

Certificate of need (CON) laws are state-based regulations requiring approval of new healthcare entities and capital expenditures. Varying by state, these regulations impact hospices in 14 states and DC, with several states re-examining provisions. This cross-sectional study examined the association of CON status on hospice quality outcomes using the hospice item set metric (HIS). Data from the February 2022 Medicare Hospice Provider and General Information reports of 4870 US hospices were used to compare group means of the 8 HIS measures across CON status. Multiple regression analysis was used to predict HIS outcomes by CON status while controlling for ownership and size. Approximately 86% of hospices are in states without a hospice CON provision. The unadjusted mean HIS scores for all measures were higher in CON states (M range 94.40-99.59) than Non-CON (M range 90.50-99.53) with significant differences in all except treatment preferences. In the adjusted model, linear regression analyses showed hospice CON states had significantly higher HIS ratings than those from Non-CON states for beliefs and values addressed (β = .05, P = .009), pain assessment (β = .05, P = .009), dyspnea treatment (β = .08, P < .001) and the composite measure (β = .09, P < .001). Treatment preferences, pain screening, dyspnea screening, and opioid bowel treatment were not statistically significant (P > .05). The study suggests that CON regulations may have a modest, but beneficial impact on hospice-reported quality outcomes, particularly for small and medium-sized hospices. Further research is needed to explore other factors that contribute to HIS outcomes.

US Hospice “Leave the Room” Policies: Ethical Challenge to Nursing Commitments (TH111A)

US Hospice “Leave the Room” Policies: Ethical Challenge to Nursing Commitments (TH111A)

Association of Hospice Profit Status With Family Caregivers’ Reported Care Experiences

Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences. To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status. Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022. Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics. There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average. In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Priority Research Topics and Patient and Family Needs in a National Sample of Hospice Agencies.

Various contextual factors surrounding hospice care have reinforced the need for scholars to pursue practice-relevant research questions. Although priority-setting is a primary approach to streamline such efforts, research appears yet to have conducted priority-setting with hospice professionals. To describe the areas of needed research and clinical focus voiced by a national probability sample of US hospice agency representatives. A national probability sample of 600 hospice agencies proportionately stratified by state and profit status was surveyed. At the end of the survey, participants indicated whether or not they were willing to answer two additional open-ended questions. These two questions requested participants' input on areas of needed attention related to (1) research topics and (2) unmet needs for patients and families. Responses were content analyzed. A total of 317 surveys were completed (response rate=61.8%). Viable responses were recorded by 129 participants responding to at least one item. Content analysis generated the following five categories (and various subcategories): earlier access to hospice, education (outside physicians, patients and families, public), policy barriers to hospice enrollment (hospice eligibility and reimbursement, gaps in insurance coverage), effects of policy restrictions on hospice care (reimbursement for care, pain management, clinician issues), and improving the provision of in-home hospice care (community resources, supports for caregivers, supports for when caregiver assistance is inadequate, needs already are being met). These findings presented by hospice agency representatives reflect directions for research and clinical development. Efforts are needed to cohere professional- and patient-reported areas of needed attention.

Front-Line Hospice Staff Perceptions of Barriers and Opportunities to Discussing Advance Care Planning With Hospice Patients and Their Families.

To understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations. Qualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis. Participants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people. Interview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework. Capability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee's goal of providing personalized, patient-centered care. Implicit assumptions about patients' and families' preferences reduced staff's motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency. Even hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.

Hospice Glassdoor and CAHPS® Scores-Glassdoor Scores and Hospice Financial Characteristics Predict Hospice Consumer Assessment of Healthcare Providers and Systems Scores.

Recent public data transparency on both decedent caregiver satisfaction and employee satisfaction is impacting the three most essential needs of any hospice, admitting hospice enrollees, attracting hospice professionals and delivering on quality. Explore the relationship between Glassdoor hospice employee recommendation data, hospice financial characteristics, and Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores among the 50 largest US hospices. Retrospective data with multivariate regression analysis. Provider CAHPS hospice survey data from 2019-2020 and Glassdoor employee recommendation data. Glassdoor Composite and CAHPS Composite were positively correlated (r = .469, p < .01). Glassdoor scores, profit status, and acquisition status predicted Hospice CAHPS scores and explained 44% of the variation in CAHPS Composite. Being a large, for-profit hospice in acquisition status each predicted lower CAHPS scores. Non-profit hospices had significantly higher Glassdoor and CAHPS scores than for-profit hospices. CAHPS Composite and CAHPS Star Rating have potential as global indicators to inform customers of a given hospice's overall quality on the Hospice Compare website of CMS. Hospice leaders seeking improvements in CAHPS scores are encouraged to seek feedback on whether their own employees would recommend their hospice to a friend. Communication and responsiveness were the strongest indicators of overall hospice quality. Skelton hospice staffing models must give way to realistic models that value company culture and employee satisfaction. Hospice quality and hospice profits are not necessarily mutually exclusive. Future research should explore the difference in themes emerging from positive and negative online caregiver reviews.

US hospices’ approach to racial/ethnic minority inclusion: a qualitative study

ObjectiveTo examine hospices’ approaches to improving the current racial/ethnic hospice utilisation disparity.MethodsDuring June and July 2020, we conducted in-depth, semistructured interviews with 22 hospice leaders from across the USA. The...

Integrating work and home when patients are dying: a mixed-methods study of hospice care workers and work–family conflict in the US

Scholars of work and family have argued that flexibility in hours and location may support integration between work and home. Home-based hospice care is a type of work that has a great deal of flexibility but it is not clear that it is used to support workers. Using interview and survey data from 179 US hospice workers, we show that the speeding up of care and culture of self-sacrifice make integration difficult. Almost a third of workers report that work takes too much time from home life, which is associated with higher turnover intention, higher burnout and lower life satisfaction.

"It's Case by Case, and It's a Struggle": A Qualitative Study of Hospice Practices, Perspectives, and Ethical Dilemmas When Caring for Hospice Enrollees with Full-Code Status or Intensive Treatment Preferences.

Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code. Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments. Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method. Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences. Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.

Remembering Hospice.

This book review essay discusses The Crisis of US Hospice Care: Family and Freedom at the End of Life (2019), by Harold Braswell.

Brasswell, H. (2019). The Crisis of US Hospice Care: Family and Freedom at the End-of-Life

Brasswell, H. (2019). <i>The Crisis of US Hospice Care: Family and Freedom at the End-of-Life</i>

Content Analysis of Negative Online Reviews of Hospice Agencies in the United States

IMPORTANCEAs online reviews of health care become increasingly integral to patient decision-making, understanding their content can help health care practices identify and address patient concerns.OBJECTIVETo identify the most frequently cited complaints in negative (ie, 1-star) online reviews of hospice agencies across the United States.DESIGN, SETTING, AND PARTICIPANTSThis qualitative study conducted a thematic analysis of online reviews of US hospice agencies posted between August 2011 and July 2019. The sample was selected from a Hospice Analytics database. For each state, 1 for-profit (n = 50) and 1 nonprofit (n = 50) hospice agency were randomly selected from the category of extra-large hospice agencies (ie, serving >200 patients/d) in the database. Data analysis was conducted from January 2019 to April 2019.MAIN OUTCOMES AND MEASURESReviews were analyzed to identify the most prevalent concerns expressed by reviewers.RESULTSOf 100 hospice agencies in the study sample, 67 (67.0%) had 1-star reviews; 33 (49.3%) were for-profit facilities and 34 (50.7%) were nonprofit facilities. Of 137 unique reviews, 68 (49.6%) were for for-profit facilities and 69 (50.4%) were for nonprofit facilities. A total of 5 themes emerged during the coding and analytic process, as follows: discordant expectations, suboptimal communication, quality of care, misperceptions about the role of hospice, and the meaning of a good death. The first 3 themes were categorized as actionable criticisms, which are variables hospice organizations could change. The remaining 2 themes were categorized as unactionable criticisms, which are factors that would require larger systematic changes to address. For both for-profit and nonprofit hospice agencies, quality of care was the most frequently commented-on theme (117 of 212 comments [55.2%]). For-profit hospice agencies received more communication-related comments overall (34 of 130 [26.2%] vs 9 of 82 [11.0%]), while nonprofit hospice agencies received more comments about the role of hospice (23 of 33 [69.7%] vs 19 of 31 [61.3%]) and the quality of death (16 [48.5%] vs 12 [38.7%]).CONCLUSIONS AND RELEVANCERegarding actionable criticisms, hospice agencies could examine their current practices, given that reviewers described these issues as negatively affecting the already difficult experience of losing a loved one. The findings indicated that patients and their families, friends, and caregivers require in-depth instruction and guidance on what they can expect from hospice staff, hospice services, and the dying process. Several criticisms identified in this study may be mitigated through operationalized, explicit conversations about these topics during hospice enrollment.

Estimates of Medication Diversion in Hospice

This study uses a random survey of US hospice agencies to estimate rates of confirmed and suspected cases of medication diversion away from patients in hospice and association of diversion rates with agency characteristics and state opioid death rates.

Differences in Caregiver Reports of the Quality of Hospice Care Across Settings.

To examine variation in reported experiences with hospice care by setting. Consumer Assessment of Healthcare Providers and Systems Hospice (CAHPS®) Survey data from 2016 were analyzed. Multivariate linear regression analysis was used to examine differences in measure scores by setting of care (home, nursing home [NH], hospital, freestanding hospice inpatient unit [IPU], and assisted living facility [ALF]). A total of 2636 US hospices. A total of 311 635 primary caregivers of patients who died in hospice. Outcomes were seven hospice quality measures, including five composite measures that assess aspects of hospice care important to patients and families, including hospice team communication, timeliness of care, treating family member with respect, symptom management, and emotional and spiritual support, and two global measures of the overall rating of the hospice and willingness to recommend it to friends and family. Analyses were adjusted for mode of survey administration and differences in case-mix between hospices. Caregivers of decedents who received hospice care in a NH reported significantly worse experiences than caregivers of those in the home for all measures. ALF scores were also significantly lower than home for all measures, except providing emotional and spiritual support. Differences in NH and ALF settings compared to home were particularly large for hospice team communication (ranging from -11 to -12 on a 0-100 scale) and getting help for symptoms (ranging from -7 to -10). Consistently across all care settings, hospice team communication, treating family member with respect, and providing emotional and spiritual support were most strongly associated with overall rating of care. Important opportunities exist to improve quality of hospice care in NHs and ALFs. Quality improvement and regulatory interventions targeting the NH and ALF settings are needed to ensure that all hospice decedents and their family receive high-quality, patient- and family-centered hospice care. J Am Geriatr Soc 68:1218-1225, 2020.

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.

This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

The Crisis of US Hospice Care: Family and Freedom at the End of Life by Harold Braswell

The Crisis of US Hospice Care: Family and Freedom at the End of Life by Harold Braswell