Hospice Providers Research Articles

Hospice Administrators' and Providers' Perspectives on Providing Upstream Palliative Care: Facilitators, Barriers, and Policy Prescriptions.

Background: Among patients with serious illness, palliative care before hospice enrollment is associated with improved quality of life, reduced symptom burden, and earlier transitions to hospice. However, fewer than half of eligible patients receive specialty palliative care referrals. As most hospice clinicians and administrators have experience in specialty palliative care, several emerging programs propose engaging hospice clinicians to provide early palliative care. Objective: We sought to identify barriers and facilitators to upstream palliative care. Design: We conducted a key informant qualitative study among hospice administrators and clinicians. Setting/Subjects: We conducted semi-structured interviews with 23 hospice administrators and clinicians in eight states from March to August 2022. We identified participants using snowball and purposive sampling using states that participate in Medicare Advantage's value-based insurance design Model. Results: Respondents indicated that barriers to early palliative care included inadequate staffing and reimbursement. Hospice clinicians providing community-based palliative care can address access barriers and improve transitions to hospice. Respondents expressed desire for payer guidance in identifying eligible patients but were cautious about payers acting as direct palliative care providers. However, payers could facilitate uptake by broadening and specifying coverage of services to include goals of care conversations and symptom management. Routine referrals initiated by objective measures could potentially increase access. Conclusions: Utilizing hospice providers to provide upstream palliative care can increase access, improve outcomes, and ease the transition to hospice.

Understanding the home hospice experience of Puerto Rican caregivers.

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.

California Hospice Ownership Changes From 2018-2020: A Spatial Analysis and Case Illustration.

Hospices in California have undergone significant and complicated ownership changes in recent years. Little is known about the impact of these ownership changes on hospices. The purpose of our longitudinal, retrospective descriptive study was to describe the ownership changes impacting hospices 2018 to 2021 in California. Using descriptive statistics, we measured characteristics of hospices with and without ownership changes employing public data from the California Home Health Agencies and Hospice Annual Utilization Report. Ownership change characteristics were measured via publicly available hospice provider and facility data. Spatial characteristics were additionally measured via latitude and longitude publicly available data. Our findings showed that ownership changes were significant and complicated. An influx of for-profit organizations into the California market was primarily responsible for these changes. Additionally, lack of corporate financial public disclosure and voluntary hospice accreditation, certification, and reporting result in a lack of free, publicly available, definitive comprehensive data on for-profit hospice ownership. This hinders information gathering on and provider/familial choice-making regarding hospices. Our study provides critical insight into the impact of ownership changes and lack of definitive, free, publicly available information on adult hospices in California caring for children and has important clinical, research, and policy implications.

Hospice providers serving assisted living residents: Association of higher volume with lower quality.

Assisted living (AL) community caregivers are known to report lower quality of hospice care. However, little is known about hospice providers serving AL residents and factors that may contribute to, and explain, differences in quality. We examined the association between hospice providers' AL patient-day volume and their quality ratings based on Hospice Item Set (HIS) and Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Surveys. This cross-sectional study employed information from the Medicare Compare website and Medicare claims data. Medicare-eligible AL residents were identified using previously validated methods and merged with hospice claims. Linear probability models adjusting for county fixed effects were used to examine the association between hospice provider AL volume, measured as the share of annual hospice patient days from AL residents, and quality measures obtained from HIS and CAHPS. Models controlled for hospice providers' profit status and daily patient census. Higher AL-volume hospice providers were 7 percentage points more likely to have caregivers reporting lower median scores on domains of pain assessment, dyspnea treatment, and emotional support. Their caregivers also reported lower scores in team communications and training family to provide care. Higher AL-volume hospice providers also were 5 percentage points less likely to get higher aggregated scores from all CAHPS domains and 7 percentage points less likely to have higher HIS composite scores. Hospice providers serving higher volumes of AL patient days had lower quality scores. In order to identify targeted opportunities for quality improvement, research is needed to understand why lower quality providers are concentrated in the AL market.

The Medicare Care Choices Model was associated with reductions in disparities in the use of hospice care for Medicare beneficiaries with terminal illness.

To assess the effects of the Medicare Care Choices Model (MCCM) on disparities in hospice use and quality of end-of-life care for Medicare beneficiaries from underserved groups-those from racial and ethnic minority groups, dually eligible for Medicare and Medicaid, or living in rural areas. Medicare enrollment and claims data from 2013 to 2021 for terminally ill Medicare fee-for-service beneficiaries nationwide. Through MCCM, terminally ill enrolled Medicare beneficiaries received supportive and palliative care services from hospice providers concurrently with curative treatments. Using a matched comparison group, we estimated subgroup-specific effects on hospice use, days at home, and aggressive treatment and multiple emergency department visits in the last 30 days of life. The sample included decedent Medicare beneficiaries enrolled in MCCM and a matched comparison group from the same geographic areas who met model eligibility criteria at time of enrollment: having a diagnosis of cancer, congestive heart failure, chronic obstructive pulmonary disease, or HIV/AIDS; living in the community; not enrolled in the Medicare hospice benefit in the previous 30 days; and having at least one hospital stay and three office visits in the previous 12 months. Eligible beneficiaries from underserved groups were underrepresented in MCCM. MCCM increased enrollees' hospice use and the number of days at home and reduced aggressive treatment among all subgroups analyzed. MCCM also reduced disparities in hospice use by race and ethnicity and dual eligibility by 4.1 (90% credible interval [CI]: 1.3-6.1) and 2.4 (90% CI: 0.6-4.4) percentage points, respectively. It also reduced disparities in having multiple emergency department visits for rural enrollees by 1.3 (90% CI: 0.1-2.7) percentage points. MCCM increased hospice use and quality of end-of-life care for model enrollees from underserved groups and reduced disparities in hospice use and having multiple emergency department visits.

A Tunneled Catheter Placement Program for Community Hospices

ContextThe symptoms associated with the excessive fluid accumulation of ascites or pleural effusions can be intractable to medical management and can have a significant negative impact on quality of life of hospice patients. Hospice of the Valley, a community-based, nonprofit hospice agency has historically referred patients to outpatient providers for paracentesis, thoracentesis, and placement of tunneled drainage catheters. ObjectivesTo describe an in-house pilot program of tunneled catheter placement to provide immediate and longer-term symptom relief for selected hospice patients. MethodsThe logistics and cost of the pilot program are described. Key data elements, including select demographics, patient eligibility screening, and incidence of procedure-related or late complications are reported. ResultsA total of 135 drainage procedures completed on 127 unique hospice patients over 27 months (2020–2023) were reviewed. The rate of procedure-related complications (<4%) and late complications (<3%) are low. The average cost per procedure ($1030) compares favorably with outpatient providers’ fees. The program was well-accepted by the interdisciplinary hospice team, patients, and families. ConclusionsAn in-house program of tunneled catheter placement is a feasible option for hospice providers with low-cost exposure and high potential for improved quality of life and symptom relief for selected patients.

Supportive Services at End of Life can Help Reduce Acute Care Services: Observations From the Medicare Care Choices Model.

This study identifies the mechanisms through which supportive and palliative care services at the end-of-life helped prevent unnecessary use of acute care services. From 2016 to 2021, the Medicare Care Choices Model (MCCM) tested whether offering Medicare beneficiaries the option to receive supportive and palliative care services through hospice providers, concurrently with treatments for their terminal conditions, improved patients' quality of life and care and reduced Medicare expenditures. Previous MCCM evaluation results showed that the model achieved its goals, but did not examine in depth the causal mechanisms leading to these results. Mixed-methods evaluation based on descriptive analysis of MCCM encounter data and qualitative analysis of interviews with staff from high-performing MCCM hospices. MCCM hospices provided 217 156 encounters to 7263 enrollees over 6years. Enrollees received on average 30 encounters with hospice staff while enrolled in the model, representing about 10 encounters per month enrolled. Most encounters were delivered by clinically trained staff in the patient's home. Hospice staff identified five services critical for keeping patients from seeking acute care services: early and frequent needs assessments, direct observation of patients in their homes, immediate responses to patients' medical complaints, round-the-clock telephone access to nursing staff, and communication and coordination of care with primary care physicians and specialists. Palliative care approaches that are high-touch, employ clinically trained staff who visit patients in their homes, routinely evaluate how to manage patient symptoms, and are available when needs arise can improve outcomes and decrease costs at the end of life.

Perspectives on Transfusions for Hospice Patients With Blood Cancers: A Survey of Hospice Providers

Patients with blood cancers have low rates of hospice use. While lack of transfusion access in hospice is posited to substantially contribute to these low rates, little is known about the perspectives of hospice providers regarding transfusion access in hospice. To characterize hospice providers' perspectives regarding care for patients with blood cancers and transfusions in the hospice setting. In 2022, we conducted a cross-sectional survey of a sample of hospices in the United States regarding their experience caring for patients with blood cancers, perceived barriers to hospice use, and interventions to increase enrollment. We received 113 completed surveys (response rate=23.5%). Of the cohort, 2.7% reported that their agency always offers transfusions, 40.7% reported sometimes offering transfusions, and 54.9% reported never offering transfusions. In multivariable analyses, factors associated with offering transfusions included nonprofit ownership (OR 5.93, 95% CI, 2.2-15.2) and daily census >50 patients (OR 3.06, 95% CI, 1.19-7.87). Most respondents (76.6%) identified lack of transfusion access in hospice as a barrier to hospice enrollment for blood cancer patients. The top intervention considered as "very helpful" for increasing enrollment was additional reimbursement for transfusions (72.1%). In this national sample of hospices, access to palliative transfusions was severely limited and was considered a significant barrier to hospice use for blood cancer patients. Moreover, hospices felt increased reimbursement for transfusions would be an important intervention. These data suggest that hospice providers are supportive of increasing transfusion access and highlight the critical need for innovative hospice payment models to improve end-of-life care for patients with blood cancers.

Association of Hospice Agency Location and Neighborhood Socioeconomic Disadvantage in the U.S.

Despite the growing increase in the utilization of hospice in the U.S, disparities exist in the utilization of hospice. Accumulating evidence has shown that neighborhood characteristics have an impact on availability of hospice agencies. To assess the association between neighborhood social vulnerability and hospice agency availability. Using the Medicare Post-Acute Care and Hospice Provider Utilization and Payment Public Use Files (PAC PUF) for 2019. Hospice agency addresses were geocoded to the census tract level. Multivariable Poisson regression models were used to assess the association between socioeconomic status SVI theme and hospice agency availability adjusting for number of home health agencies, primary care health profession shortage, per cent Black, and Percent Hispanic at the census tract level and rurality. The socioeconomic status SVI subtheme was associated with decreased likelihood of hospice agency availability (adjusted IRR (aIRR), .56; 95% CI, .50- .63; P < .001). Predominantly Black, and predominantly Hispanic neighborhoods had lower rates of hospice agency availability (aIRR, .48; 95% CI, .39-.59; P < .001 and aIRR, .29; 95% CI, .24-.36; P < .001), respectively. Neighborhood socioeconomic disadvantage was associated with lower availability of hospice agencies. Policies aimed at increasing access to hospice should be cognizant of neighborhood socioeconomic disadvantage.

Caregiver Burden and Workplace Productivity Among Hospice Cancer Caregivers.

To examine the relationships among family caregiver burden and workplace productivity and activity impairment among home hospice family caregivers of individuals with cancer who worked while providing end-of-life caregiving. Baseline data from a longitudinal study of communication between hospice providers and hospice family caregivers were used for this secondary analysis. Working family caregivers with complete workplace productivity and activity impairment data were included in this analysis (N = 30). Demographic data, caregiver burden, and workplace productivity and activity impairment were examined with descriptive statistics, correlation analysis, and hierarchical linear regressions. Hospice family caregivers were primarily White, female, married, and employed full-time. Caregiver burden levels were significantly positively associated with activity impairment, presenteeism, and work productivity loss. These relationships remained statistically significant when controlling for age. Hospice and oncology nurses can support working hospice family caregivers by assessing for burden and associated workplace challenges, as well as by providing referrals for respite and community resources.

Choosing Hospice is Not Giving Up

Choosing Hospice is Not Giving Up

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.

A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28minutes (SD = 26). The longest driving time was in Eastern Kentucky-126minutes (SD = 32), and the shortest was in South Carolina-11min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

Out-of-hours community palliative care: a national survey of hospice providers.

Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes.

Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study.

Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.

Close but Not Close Enough: How Distance Caregiving is Associated with Hospice Family Caregiver Hospice Communication Experiences

ABSTRACT Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers’ perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, “local” hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.

End-of-Life Dreams and Visions: Initial Guidelines and Recommendations to Support Dreams and Visions at the End of Life.

Background: End-of-life dreams and visions (ELDVs) are a common phenomenon in which dying patients experience dreams/visions often of deceased loved ones before death. Past research has highlighted the need for education and awareness to improve clinical engagement at the bedside in response to ELDVs. Objectives: To explore the perspectives of multidisciplinary hospice care providers who are ELDV subject matter experts. Design/Methods: Semi-structured interviews with 13 multidisciplinary hospice providers were conducted and analyzed using thematic qualitative analysis. Results: Analysis revealed six themes: Normalization, Rapport Building, Active Listening, Individualized Meaning Making, Barriers, and Education. A secondary thematic analysis focused on defining/describing ELDVs and resulted in two themes: Natural Part of Dying and ELDV Properties. Conclusions: Findings identified facilitators and barriers encountered when caring for a patient with ELDVs. Based on this, an initial set of recommendations for meaningful clinical engagement regarding ELDVs and initial operationalized definition has been proposed.

NURSING HOME PALLIATIVE CARE DURING THE PANDEMIC: DIRECTIONS FOR THE FUTURE

Abstract For this qualitative, pilot study, seven Massachusetts nursing home Directors of Nursing (DONs) were interviewed remotely about palliative care provision before and during the COVID-19 pandemic. Interview data were analyzed using thematic analysis. Palliative care addresses physical, emotional, psychological, and spiritual suffering that accompanies serious illness. Symptom management and goals of care is especially valuable for seriously ill nursing home residents. We investigated the solutions nursing home staff developed to provide palliative care during the COVID-19 pandemic despite restrictions on external resources. Before the pandemic, palliative care was delivered primarily by nursing home staff depending on formal and informal consultations from palliative care specialists affiliated with hospice providers. When COVID-19 lockdowns precluded these consultations, nursing staff did their best to provide palliative care, but were often overwhelmed by shortfalls in resources, resident decline brought on by isolation and COVID-19 itself, and a sense that their expertise was lacking. Advance care planning conversations focused on hospitalization status and options for care given COVID-19 resource constraints. Nevertheless, nursing staff discovered previously untapped capacity to provide palliative care on-site as part of standard care, building trust of residents and families. Nursing staff rose to the palliative care challenge during the COVID-19 pandemic, albeit with great effort nursing home payment and quality standards should support development of in-house staff capacity to deliver palliative care while expanding access to the formal consultations and family involvement that were restricted by the pandemic.

ALIGNMENT OF COMMUNICATION AND SUPPORT NEEDS BETWEEN LGBTQ+ FAMILY CAREGIVERS OF HOSPICE PATIENTS AND PROVIDERS

Abstract Effective and equitable end-of-life care requires alignment between the support and communication needs of hospice family caregivers and the knowledge and competence of hospice care team members. We investigate alignment between LGBTQ+ caregivers and hospice providers in a secondary analysis of data collected in three studies: 1) Surveys identifying predictors of hospice providers’ (N=122) attitudes toward LGBTQ+ caregivers and patients; 2) focus groups assessing hospice interdisciplinary care team members’ (N=48) knowledge, training, and opinions regarding LGBTQ+ family caregiver and patient communication and care needs; and 3) in-depth interviews with LGBTQ+ hospice family caregivers (N=20). Synthesis of key findings show how alignment is impacted by lack of systematic, inclusive orientation and gender data, provider religiosity, expectations of disclosure, cisheteronormative assumptions about the universality of EOL experiences, and caregivers’ experiences of minority stress. We discuss implications for developing interventions to improve provider communication, empowering caregivers, and addressing hospice-specific sources of minority stress.

LIVE DISCHARGE FROM HOSPICE WITH DEMENTIA: CHALLENGES TO SUPPORTING THE PATIENT-CAREGIVER DYAD

Abstract A live discharge from hospice disrupts care continuity and results in burdensome transitions for individuals with a life-limiting illness and their caregivers. In 2019, hospices served more than 1.6 million people across the United States, with nearly 63% of Medicare decedents age 85 or older. Of these patients, nearly 350,000 (20.9%) had a principal diagnosis of Alzheimer’s Disease/Dementia/Parkinson’s Disease. Research demonstrates that hospice care improves end-of-life outcomes for adults with Alzheimer’s Disease and related dementias (ADRD), yet with eligibility limited to a six-month prognosis, hospice is not structured to meet longer-term needs. The result is a live discharge from hospice. In 2019, 17.4% of hospice patients were discharged alive from hospice, with 6.5% discharged due to being ‘no longer terminally ill.’ The majority of live discharges are either hospice-initiated due to patient stabilization (extended prognosis resulting in a situation in which a patient no longer meets the life expectancy hospice eligibility criteria) or are patient-initiated (revocation) where a patient or proxy chooses to leave hospice care, typically to access disease-directed therapies or inpatient hospitalization. Both present unique challenges and opportunities for hospice providers. Informed by over 10 years of practice experience and research, this presentation will discuss the impact of live discharge from hospice and the unique impact for patients and primary caregivers of individuals with ADRD, the service gaps that exist for this population, and our recommendations for policy reform.