Receiving Hospice Services Research Articles

Reducing Racial Disparities at End-of-life: Using Narratives to Build Trust and Promote advance Care Planning.

Black Americans are less likely than White Americans to have advance directives, die while receiving hospice services, or have their end-of life wishes honored. The root causes of disparities include imbalance of resources, lack of trust in health care institutions, lack of adequate education regarding end-of-life options, communication differences of health care providers with black vs white patients, variable access to hospice services in different communities, and poorer pain management for Black patients compared to White patients. Because root causes are numerous, comprehensive solutions are required. When advance care planning is in place, people are more likely to choose care focused on priorities and comfort than on seeking aggressive, sometimes futile, interventions in the last weeks of life. One important component of the solution should include listening to narrative stories of Black people as they encounter life-limiting diagnoses. Gathering the stories about life events and how strength was found through adversities can be a tool for growing trusting relationships and engaging in shared decision-making. Health care professionals should invite Black patients with serious illnesses to explore the sources of their strengths and identify their core values to work toward developing directives for the nature and place of their end-of-life and help to mitigate disparities in high quality end-of-life care.

Comparison of concurrent care and traditional hospice at a regional VA.

e24065 Background: While hospice care offers many patients services promoting comfort and quality of life, the traditional hospice model described in Medicare policy presents numerous barriers to utilization. Notably, since hospice pays for all therapies related to a terminal illness, patients are often forced to make a difficult choice to stop disease-directed therapies in order to enroll in hospice. Poor provider understanding of hospice also contributes to the common scenario in which hospice is offered too late to make a meaningful impact for patients and their families. These issues were prominent in the VA population in 2006, when only 5% of eligible Veterans received hospice services. Consequently, the VA Comprehensive End-of-Life Care Initiative in 2009 created the concurrent care hospice model in where Veterans no longer had to stop all disease-directed therapies to enroll. Initial national VA data in lung cancer suggested that concurrent care may be better than traditional hospice by decreasing aggressive treatments, ICU hospitalizations, and medical costs. Our regional VA developed a Hospice Flag system that tagged patients in the electronic medical record who had either a concurrent or traditional hospice enrollment to better inform health care providers. This project investigates how the concurrent care hospice model may help achieve an important Veteran-centered outcome, which is to die in the home setting and improve access to hospice care. Methods: We retrospectively reviewed all Veterans with a hospice flag from October 2017 to July 2021 and cancer as the primary hospice diagnosis. Our primary aim was to establish correlation between hospice type and Veterans’ ultimate location of death with the percentage at home versus institution (e.g. care center, hospital, or hospice house). A secondary measure was median length-of-stay (LOS) in hospice. Results: 317 total Veterans were enrolled in concurrent care hospice (96) and traditional hospice (221) from Oct 2017 to July 2021. 72% of Veterans in concurrent care (69/96) died at home compared to only 57% in traditional hospice (125/221) with the remainder dying in an institution; this result was statistically significant by Chi-square analysis (p = 0.01). Median LOS in hospice was 62 days for concurrent care and 26 days for traditional hospice. Conclusions: This project demonstrates that concurrent care hospice is significantly associated with Veterans being able to die in their own home. Concurrent care was also correlated with longer median LOS in hospice, suggesting greater duration of support services provided to patients and families.

Association of rurality with utilization of palliative care and hospice among Medicare beneficiaries who died from pancreatic cancer: A cohort study.

Pancreatic cancer has a 5-year survival of just 10%. Services such as palliative care and hospice are thus crucial in this population, yet their geographic accessibility and utilization remains unknown. We studied the association between rurality of patient residence and the use of palliative care and hospice. Cohort study of continuously enrolled fee-for-service Medicare beneficiaries aged ≥65 diagnosed with incident pancreatic cancer between 04/01/2016-08/31/2018 and who died by 12/31/2018. In this decedent cohort of 31,460 patients, 77% lived in metropolitan areas, 11% in micropolitan areas, 7% in small towns, and 5% in rural areas. Patient demographics were largely similar across rurality; however, the proportion of White, non-Hispanic patients and social deprivation was highest in rural areas and lowest in metropolitan areas. Overall, 33% of patients used any palliative care and 77% received hospice services. After risk adjustment, there were no statistically significant differences in the use of palliative care for patients residing in metropolitan versus micropolitan, small town, or rural areas. Patients in small town (OR = 0.77, 95% CI: 0.69-0.86) and rural areas (OR = 0.75, 95% CI: 0.66-0.85) had lower adjusted odds of receiving hospice care compared to patients in metropolitan areas. The use of palliative care services captured in Medicare was low, representing either underutilization or failure to accurately measure the extent of services used. While the overall level of hospice enrollment was high, patients in rural communities had relatively lower use of hospice services compared to those in metropolitan areas.

Analysis of the current status of hospice care needs and factors influencing them among family caregivers of patients with advanced cancer

OBJECTIVE To understand the current status of the needs of patients receiving hospice services and their caregivers and the factors influencing them. METHODS A convenience sampling method was used to survey 120 family members caring for patients with advanced cancer in 1 hospital with hospice care in Ningxia from April to June 2022 as study subjects using the Barthel Index Rating Scale of Self-Care, the Caregiving Burden Scale, and the Caregiver's Need for Hospice Care Scale. RESULTS Caregivers' scores for each dimension of hospice service needs were, in descending order, social support needs  information needs  physiological needs  psychological needs  spiritual needs  health care behavioral needs; multiple linear regression analysis The results showed that education, patient relationship, willingness to receive hospice care, and burden of caregiving capacity entered the regression model (P<0.05) with R2=26.2%. CONCLUSION The level of education of caregivers, relationship with patients, willingness to receive hospice care, and the burden of caregiving ability are the main influencing factors of caregivers' demand for hospice services. The diversified needs of caregivers should be met by strengthening publicity and social support, establishing a new model of hospice care, and taking advantage of interprofessional teamwork.

A QUALITATIVE EVALUATION OF A POSITIVE REAPPRAISAL INTERVENTION FOR HOSPICE CAREGIVERS

Abstract For older adults who receive hospice services in the United States, family members often become their primary caregivers playing an essential role in delivering care. Nearly 25% of hospice patients and families report the need for improved communication and additional emotional support. However, there are few interventions targeting specifically caregivers. Whereas the term caregiving implies a unidirectional flow of benefits from the caregiver to the care recipient, caregivers also experience emotional, cognitive, behavioral, or interpersonal rewards from caring for a loved one. Research has demonstrated that positive gains are common among caregivers, often manifested with negative experiences. Positive reappraisal, a form of emotion-focused coping, is especially relevant when dealing with intractable stressors. Positive reappraisal is supplemental to problem-solving therapy interventions, yet this component has never been tested in a hospice setting. In this study, we wanted to understand hospice caregivers’ impressions of a problem-solving therapy intervention enhanced with positive reappraisal modules (called PISCESplus). We conducted a qualitative study examining hospice caregivers’ perceptions of positive reappraisal. Participants received the intervention (as part of a larger clinical trial). Caregivers’ exit interviews were audio-recorded and transcribed. Thirty hospice caregivers’ interviews were analyzed. Many participants reported a paradigm shift in their thought processes. Positive reappraisal helped them reframe negative emotions to positive ones, declutter their minds, and acknowledge that caregiving required work and effort. Study findings demonstrate the potential of this intervention to improve the coping skills of caregivers in the hospice setting.

UNDERSTANDING CAREGIVER PERSPECTIVES ON LIVE DISCHARGE AND RE-ENROLLMENT ONTO HOSPICE CARE

Abstract 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, the patient-caregiver dyad can experience a live discharge from hospice. In 2019, nearly 350,000 patients with an ADRD diagnosis received hospice services in the US, and 6.5% of hospice patients were discharged due to being ‘no longer terminally ill.’ Caregivers of adults with ADRD who experienced a live discharge (n=24) were interviewed and thematic analysis was conducted. More than half (58%) noted specific support in their caregiving roles while 46% cited feeling relief. Eleven participants were enrolled for one hospice episode, and six re-enrolled at least one time. While participants would consider re-enrolling, they are waiting for a health crisis (n=7) for eligibility, while others question the meaning of hospice for ADRD patients (n=10). Implications for policy, practice, and research to support the patient-caregiver dyad are discussed.

Racial/ethnic disparities in dementia incidence, outcomes, and health-care utilization.

Racial/ethnic disparities exist in many aspects of health care, but data on racial/ethnic disparities for neurodegenerative diseases (NDDs), such as dementia and Parkinson's disease (PD), are limited. We used North and South Carolina Medicare claims from 2013 to 2017 to evaluate disparities in incidence of NDDs and in health-care utilization and outcomes for patients with NDDs. Disparities in incidence of NDD between Black and White beneficiaries narrowed by 0.37 per 100 person-years from 2014 to 2017. After thorough covariate adjustment, Black beneficiaries had a 4% higher risk of all-cause hospitalization, spent 8% more days in skilled nursing facilities and 14% fewer days in hospice facilities, were 38% less likely to receive physical/occupational therapy services, were 8% less likely to receive dementia medications, and were 19% less likely to receive PD medications than White beneficiaries. Effective system-level approaches to promote health equity in NDD diagnosis, treatment, and outcomes are clearly needed. Racial disparities in neurodegenerative disease incidence narrowed between 2014 and 2017. Black patients were less likely than White patients to receive hospice services. Black patients were less likely than White patients to receive physical therapy. Black patients were less likely than White patients to receive Alzheimer's disease or Parkinson's disease medications. There is a shortage of neurologists in counties with high dementia incidence.

Psychometric Evaluation of the Veterans Affairs Bereaved Family Survey in Community Nursing Homes.

For over a decade, the Department of Veterans Affairs (VA) has used the Bereaved Family Survey (BFS) to measure the quality of end-of-life (EOL) care in VA inpatient settings. In 2019, VA developed a revised version of the BFS to evaluate the quality of EOL care for Veterans who received hospice services in VA-contracted community nursing homes (CNHs). The purpose of this analysis was to evaluate the psychometric properties and factor structure of the BFS-CNH. The BFS-CNH was administered to the next-of-kin of Veterans who died in a VA-contracted CNH with hospice care between October 2019 and April 2020. Exploratory factor analysis (EFA) was used with the 10 core items of the BFS-CNH that were derived from the inpatient BFS to evaluate whether the BFS-CNH exhibited a similar factor structure to the inpatient version. Cronbach's alpha was used to assess internal consistency/reliability of the identified factors and linear regression models were used to evaluate construct validity of the identified BFS-CNH factor scores and individual items. The EFA revealed a three-dimension solution that corresponded to factors on the inpatient BFS, including Care and Communication, Emotional and Spiritual Support and Death Benefits. Cronbach's alpha coefficients for all three factors indicated acceptable internal consistency. Our findings provide support for use of the BFS-CNH to evaluate the quality of EOL care provided to Veterans in CNHs and lay the foundation for future comparisons of BFS ratings between VA inpatient and CNH settings.

Is Hospital Hospice Service Associated with Efficient Healthcare Utilization in Deceased Lung Cancer Patients? Hospital Charges at Their End of Life.

In July 2015, South Korea began applying National Health Insurance reimbursement to inpatient hospice service. It is now appropriate and relevant to evaluate how hospice care is associated with healthcare utilization in terminal lung cancer patients. We used nationwide NHI claims data of lung cancer patients from 2008-2018 and identified a sample of patients deceased after July 2016. We transposed the dataset into a retrospective cohort design where a unit of analysis was each lung cancer patients' healthcare utilization. The differences in hospital charges per day were investigated depending on the patient's use of hospice service before death with the Generalized Linear Model (GLM) analysis. Additionally, subgroup analysis and the propensity score matching method were used to validate the model using the claims information of 25,099 patients. About 17.0% of patients used hospice services (N = 4260). With other variables adjusted, hospice service utilization by deceased lung cancer patients was associated with statistically significant lower hospital charges per day at the end of life (1 month, 3 months, and 6 months before death) compared to non-users. A similar trend was found in the propensity score matching model analysis. We found lower end-of-life hospital charges per day among lung cancer patients who received hospice services near death. The ever-expanding aging population requires health policymakers and the National Health Insurance program to expand hospice services for terminal cancer patients in underserved regions and hospitals that do not provide hospice.

Association of Hospice Payer With Concurrent Receipt of Hospice and Dialysis Among US Veterans With End-stage Kidney Disease

For many patients with end-stage kidney disease (ESKD), the Medicare Hospice Benefit precludes concurrent receipt of hospice and dialysis services, forcing patients to choose between continuing dialysis or enrolling in hospice. Whether the more liberal hospice eligibility criteria of the Veterans Health Administration's (VA) are associated with improved access to concurrent dialysis and hospice care for patients with ESKD is not known. To examine the frequency of concurrent hospice and dialysis care among US veterans by hospice payer and examine the payer for concurrent dialysis. This was a retrospective cross-sectional study of all 70 577 VA enrollees in the US Renal Data System registry who initiated maintenance dialysis and died in 2007 to 2016. Data were analyzed from April 2021 to August 2022. Hospice payer, either Medicare, VA inpatient hospice, or VA-financed community-based hospice ("VA community care"). Primary hospice diagnosis-ESKD vs non-ESKD. Concurrent receipt of hospice and dialysis services ("concurrent care"). There were 18 420 (26%) eligible veterans with ESKD who received hospice services (mean [SD] age, 75.4 [10.0] years; 17 457 [94.8%] men; 2997 [16.3%] Black, 15 162 [82.3%] White, and 261 (1.4%) individuals of other races). Most of the sample (n = 16 465; 89%) received hospice services under Medicare and 5231 (28%) continued to receive dialysis after hospice initiation. The adjusted proportion of veterans receiving concurrent care was higher for those enrolled in VA inpatient hospice or VA community care hospice than it was for those enrolled in Medicare hospice (57% and 41% vs 24%, respectively; both P < .001). Regardless of hospice payer, the majority (87%) of the dialysis treatments after hospice initiation were financed by the VA, including for Medicare beneficiaries who had a hospice diagnosis other than ESKD. Median hospice length of stay was 43 days for veterans who received concurrent dialysis vs 4 days for those who did not. In this retrospective cross-sectional study of US veterans with ESKD, a substantially higher proportion of veterans in VA-financed hospice received 1 or more dialysis treatments after hospice initiation than those enrolled in Medicare-financed hospice. Regardless of hospice payer, the VA financed most concurrent dialysis treatments. Hospice users who received concurrent dialysis care had substantially longer hospice lengths of stay than those who did not. These findings suggest that Medicare hospice policy may substantially restrict access to concurrent hospice and dialysis care among veterans with ESKD.

Virtual volunteering during the COVID-19 pandemic: case studies of virtual animal-assisted activities in a Singapore hospice

The COVID-19 pandemic has impacted the healthcare sector in many ways. Social safety measures in hospices in Singapore include cessation of non-essential services such as volunteering. Literature shows that volunteers are valuable in enhancing the quality of life of patients in receiving hospice services. They provide patients with needed companionship, and meaningful activities such as bringing their pets into the wards in animal-assisted activities. The rise of telehealth during the COVID-19 pandemic brought an increasing interest in virtual volunteering such as virtual animal-assisted activities (VAAA). However, there is currently a lack of literature on virtual volunteering as its increased demand is a recent trend. Virtual volunteering in a hospice in Singapore is described through two retrospective case studies of VAAA. These case studies showed that a therapeutic alliance can be effectively built via virtual platforms. Benefits of virtual volunteering include enabling continued service delivery and increased comfort for some patients as virtual interactions can be less intimidating as compared to interacting with an animal in real life. Virtual volunteering may be considered to complement face-to-face volunteering in end-of-life care as part of normal practice.

African American Family Caregivers Share How they Prepared for the Death of an Older Adult with Dementia: A Pilot Study of Hospice Care in A Nursing Home

The focus of this pilot study was to ascertain how bereaved African American caregivers prepared for the death of an older family member who died from a dementia-related diagnosis and the role of hospice care; an area with little research to date. Because African American older adults in the United States are at greater risk than Caucasian older adults for dementia-related health problems though less likely to be diagnosed, treated, or to enroll in hospice services, this exploratory study asked questions of the family caregivers’ experiences in preparing for the death. Purposive criterion sampling was used to identify six African American bereaved caregivers whose family member lived in a nursing home (five who were enrolled in hospice services) who were extensively interviewed, with the use of conventional content analysis of the transcripts to identify the findings. Because of the limited sample size, themes identified were considered preliminary and may help guide ongoing and further research. Five primary themes revealed ways caregivers prepared: accepting reality; “I just kind of knew;” person with dementia “was ready;” “spending time;” and, getting your “business in order.” All caregivers believed it was important to be prepared for the death, with the five who received hospice services reporting that they were prepared. Further research is needed to explore these preliminary findings of African American caregivers of family members with dementia at end-of-life to further inform social work and hospice team care.

Randomized Trial of a Palliative Care Intervention to Improve End-of-Life Care Discussions in Patients With Metastatic Breast Cancer.

Studies show that early, integrated palliative care (PC) improves quality of life (QoL) and end-of-life (EoL) care for patients with poor-prognosis cancers. However, the optimal strategy for delivering PC for those with advanced cancers who have longer disease trajectories, such as metastatic breast cancer (MBC), remains unknown. We tested the effect of a PC intervention on the documentation of EoL care discussions, patient-reported outcomes, and hospice utilization in this population. Patients with MBC and clinical indicators of poor prognosis (n=120) were randomly assigned to receive an outpatient PC intervention (n=61) or usual care (n=59) between May 2, 2016, and December 26, 2018, at an academic cancer center. The intervention entailed 5 structured PC visits focusing on symptom management, coping, prognostic awareness, decision-making, and EoL planning. The primary outcome was documentation of EoL care discussions in the electronic health record (EHR). Secondary outcomes included patient-report of discussions with clinicians about EoL care, QoL, and mood symptoms at 6, 12, 18, and 24 weeks after baseline and hospice utilization. The rate of EoL care discussions documented in the EHR was higher among intervention patients versus those receiving usual care (67.2% vs 40.7%; P=.006), including a higher completion rate of a Medical Orders for Life-Sustaining Treatment form (39.3% vs 13.6%; P=.002). Intervention patients were also more likely to report discussing their EoL care wishes with their doctor (odds ratio [OR], 3.10; 95% CI, 1.21-7.94; P=.019) and to receive hospice services (OR, 4.03; 95% CI, 1.10-14.73; P=.035) compared with usual care patients. Study groups did not differ in patient-reported QoL or mood symptoms. This PC intervention significantly improved rates of discussion and documentation regarding EoL care and delivery of hospice services among patients with MBC, demonstrating that PC can be tailored to address the supportive care needs of patients with longer disease trajectories. ClinicalTrials.gov identifier: NCT02730858.

Place of Death Among Assisted Living Residents as a Factor of Hospice Regulations

Our objective was to examine the likelihood of dying in RC/AL among a national cohort of fee-for-service Medicare beneficiaries who died in 2018 (N=31,414) as a factor regulations allowing hospice care. We estimated multivariable logistic regression models to examine the association between RC/AL as place of death and supportive hospice regulations, controlling for demographic characteristics, dual Medicare/Medicaid eligibility, years in AL, and hospital referral region (HRR) to control for hospice practice patterns. A majority of beneficiaries in our cohort died in RC/AL; more than half while receiving hospice services. In unadjusted models, the odds of remaining in RC/AL communities until death were significantly higher in the presence of regulations supportive of hospice care. This relationship was no longer significant once adjusting for covariates and an HRR fixed effect, suggesting important variation in end-of-life experiences for AL residents not explained by hospice regulations.

End-of-Life Care for Older Adults with Aggressive Non-Hodgkin Lymphoma

Background: Aggressive non-Hodgkin lymphoma (NHL) commonly affects older adults and is often treated with intensive therapies. Receipt of intensive therapies and absence of a clear transition between the curative and palliative phases of treatment yield prognostic uncertainty and risk for poor end-of-life (EOL) outcomes. However, data regarding the EOL outcomes of this population are lacking.Methods: We conducted a retrospective analysis of adults >65 years with aggressive NHL treated with systemic therapy at Massachusetts General Hospital from 4/2000-7/2020 who subsequently died. We abstracted patient and clinical characteristics and EOL outcomes from the electronic health record (EHR), including patients' place of death, cause of death, palliative care and hospice utilization, and hospice length of stay using the EHR and the Social Security Death Index. We also determined whether patients were hospitalized (yes versus no), received systemic therapy (yes versus no), or were admitted to the ICU (yes versus no) within 30 days of death. Using multivariable logistic regression, we examined factors associated with hospitalization within 30 days of death and hospice utilization.Results: Among 91 patients (median age = 75 years; 37.4% female), the most common lymphoma diagnosis was de novo DLBCL/grade 3B follicular lymphoma (64/91, 70.3%), and the majority (64/91, 70.3%) had advanced stage disease. Overall, 70.3% (64/91) were hospitalized, 34.1% (31/91) received systemic therapy, and 23.3% (21/90) had an intensive care unit admission within 30 days of death. The rates of palliative care consultation and hospice utilization were 47.7% (42/88) and 39.8% (35/88), respectively. A minority (21/88, 23.9%,) received palliative care more than 30 days before death. Of those receiving palliative care consultations, the majority (33/42, 78.6%) occurred exclusively in the inpatient setting, and most (32/42, 76.2%) were seen either as a one-time consultation or followed during a single inpatient hospitalization. Symptom management (24/42, 57.1%) was the most common reason for palliative care consultation, followed by both symptom management and goals of care (11/42, 26.2%) and goals of care (4/42, 9.5%). Only 39.8% (35/88) received hospice services, with 80.7% (71/88) having a hospice length of stay ≤ 7 days. Among hospice enrollees, the median length of stay on hospice was 7 days (range: 0-117). Among all patients, 51.6% (47/91) died in hospital, rehab, or nursing home, 23.1% (21/91) died at home, 11.0% (10/91) died in inpatient hospice or a hospice house, and 14.3% (13/91) had an unknown or other place of death. The most common cause of death was cancer progression (44/91, 48.4%,) followed by infection or cancer treatment complication (20/91, 22.0%). In multivariable analysis, elevated LDH was associated with risk of hospitalization within 30 days of death (OR 3.61, p=0.014). Palliative care consultation (OR 4.45, p=0.005) and hypoalbuminemia (OR 0.29, p=0.026) were associated with likelihood of hospice utilization.Conclusions: Older adults with aggressive NHL often experience high health care utilization and infrequently utilize hospice care at the EOL. Our findings underscore the need for interventions to optimize the quality of EOL care for this population, and provide important data to guide informed decision-making and help inform future interventions aimed at improving the EOL care of this unique geriatric oncology population. DisclosuresNo relevant conflicts of interest to declare.

Patterns of health care utilization among Medicare beneficiaries diagnosed with pancreatic adenocarcinoma

BackgroundCare patterns among patients diagnosed with pancreatic adenocarcinoma remain poorly defined. MethodsCluster analysis was performed on patients with pancreatic adenocarcinoma to assess time from diagnosis to death spent in different care settings (home self-care-dominant[HSC], acute in-hospital care-dominant[ACS], hospice care-dominant[HC] or mixed home and hospice care[MHH]). ResultsAmong 32,816 patients, most belonged to the HSC group (n = 13,459, 41%), followed by MHH (n = 9,091, 28%), ACS (n = 5,737, 18%) and HC (n = 4,529, 14%). Only about 1 in 3 patients in the HSC (n = 4,028, 30%) or ACS (n = 2,206, 35%) received hospice services for at least one week before death. 16% of patients (n = 5,188) died in the hospital, which was most common among ACS patients (n = 1,640, 29%). Median daily expenditures varied according to health care utilization (HSC, $44.6, IQR 12.3–130.1 vs MHH, $162.3, IQR 60.5–351.9 vs ACS, $489.7, IQR 243.2–856.8 vs HC, $306.1, IQR 132.3–580.0; p < 0.001). ConclusionsPancreatic adenocarcinoma patients differed with regards to health care utilization, hospice use and expenditures following diagnosis.

Transfusion Dependence and Use of Hospice Among Medicare Beneficiaries with Leukemia

Background: Patients (pts) with blood cancers use palliative and hospice services at end of life (EOL) less frequently than those with solid tumors. Some studies (El-Jawahri, Cancer, 2015; Odejide, Cancer, 2017) suggest that transfusion dependence (TD) may be a barrier to hospice enrollment, as hospice organizations typically disallow life-extending transfusion support. We sought to evaluate the association between TD and outcomes at EOL among Medicare beneficiaries with acute and chronic leukemias. Methods: From the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare database, we identified Medicare beneficiaries ≥65 years old with acute (myeloid or lymphoblastic) and chronic (lymphocytic, myeloid, or myelonomocytic) leukemias, who were diagnosed in 1996-2011 and died in 2001-2011, after >30 days from diagnosis. We defined TD as ≥2 transfusions (at least 5 days apart, inpatient or outpatient) within 30 days before death or hospice enrollment. Endpoints included use of hospice services at EOL and duration of hospice stay. We studied associations between endpoints and TD in robust Poisson models, reporting relative risk (RR) with 95% confidence intervals (CI). All models were adjusted for age, sex, race, marital status, poverty indicator, comorbidity index, poor performance status, prior dementia, year of death, and time from diagnosis to death. Cost of care at EOL was approximated as inflation-adjusted Medicare spending within 30 days before death. Results: Among 21,076 eligible pts (median age 79 years, 44% women, 46% acute leukemias), 20% were TD before death/hospice enrollment (Table). TD pts were significantly younger, more often male, and more often had acute leukemia. Use of hospice at EOL increased from 35% in 2001 to 49% in 2011 (Ptrend Adjusting for baseline characteristics, TD was associated with a slightly higher likelihood of hospice enrollment (RR 1.07, 95%CI, 1.03-1.11), but also with a 51% shorter time on hospice (RR 0.49, 95%CI, 0.44-0.54), and a 38% higher risk of receiving hospice services for less than 3 days (RR 1.38, 95%CI, 1.26-1.52). These associations were similar for acute and chronic leukemia (Pinteraction>.05). TD was also associated with less frequent outpatient hospice referral in chronic (RR 0.73, 95%CI, 0.65-0.82) but not in acute leukemia (RR 0.96, 95%CI 0.90-1.03). The results were consistent in sensitivity analyses varying TD definition, or restricted to pts with leukemia recorded as cause of death (N=14,678). Conclusions: Contrary to prior data in myelodysplastic syndrome (Fletcher, Cancer, 2016), we found more frequent use of hospice among Medicare beneficiaries with acute and chronic leukemias who were dependent on transfusions, suggesting that TD may correlate with severity of illness. However, markedly shorter time on hospice among TD pts indicates that the need for transfusion support may significantly delay hospice enrollment. Because use of hospice services is associated with lower use of resources and costs at EOL, allowing palliative transfusions for pts with terminal leukemia may maximize the benefits of hospice from both patients9 and society9s perspective. While hospice use in leukemias appears to be increasing, a large proportion of pts still die in the hospital. Hospice care increases the likelihood of dying at home, where most Americans say they prefer to be at the EOL. Disclosures LeBlanc: Pfizer: Consultancy; Celgene: Honoraria; AstraZeneca: Research Funding; Boehringer Ingelheim: Membership on an entity9s Board of Directors or advisory committees; Seattle Genetics: Research Funding; Janssen: Honoraria; Flatiron Health: Consultancy; Cambia Health Foundation: Research Funding; Helsinn Therapeutics: Consultancy, Honoraria; Otsuka: Membership on an entity9s Board of Directors or advisory committees; American Cancer Society: Research Funding.

Dying in Place: Factors Associated with Hospice Use in Assisted Living and Residential Care Communities in Oregon

Hospice use among assisted living residents may support aging in place. A cross-sectional survey was used to characterize variation in the health and personal care needs of Oregon assisted living and residential care (AL/RC) residents who did and did not receive hospice services. All AL communities licensed in Oregon as of fall 2019 were asked to answer questions about three randomly selected residents. A final sample of 998 residents was included in the analysis. Multiple variable logistic regression was used to examine associations between resident- and community-level characteristics and hospice use. While hospice services provide supplemental support for AL residents’ end-of-life process, our findings show that residents often receive continued assistance from AL staff as their condition deteriorates.

Providing Palliative Care to Neonates With Anencephaly in the Home Setting.

Parents who choose to carry a pregnancy complicated by a life-limiting congenital anomaly such as anencephaly may give birth to a live neonate and be discharged home. Very little guidance is available to health care professionals providing palliative care in the home setting to this population. This article is a secondary analysis that discusses the concerns and complications that parents experienced after bringing home a neonate with anencephaly. Each parental experience is a qualitative descriptive summary extracted from a larger study on the impact of anencephaly on parents. Parents reported feeling alone in their grief and struggled with their partners' differing style of grief. Parents' primary concerns after hospital discharge included transporting their neonate home, feeding their neonate, changing cranial defect dressings, managing pain and seizures, addressing uncertainty, and facilitating a good death. All parents received hospice services from health care professionals without perinatal bereavement training or experience. Only 1 woman received follow-up care after the death of her son. Preparing and educating health care professionals providing hospice and palliative services with perinatal bereavement training may be beneficial. Identifying and allocating local and online perinatal bereavement resources may provide parents with the tools and support necessary to facilitate healing after perinatal loss.

Survival in hospice patients with dementia: the effect of home hospice and nurse visits.

Hospice patients with dementia are at increased risk for live discharge and long lengths of stay (>180 days), causing patient and family caregiver stress and burden. The location and timing of clinician visits are important factors influencing whether someone dies as expected, in hospice, or experiences a live discharge or long length of stay. Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare-intended 6-month period. Retrospective cohort study. Non-profit hospice agency. Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017. Multivariable survival analyses examined the effects of receiving home hospice (vs. nursing home) and timing of nurse visits on death within 6 months of hospice enrollment, compared to live discharge or long length of stay. Models adjust for relevant demographic and clinical factors. Thirty-nine percent (39%) of patients experienced live discharge or long length of stay. Home hospice patients were more likely to experience live discharge or long length of stays (HR for death: 0.77, 95%CI: 0.69-0.86, p < 0.001). Frequency of nurse visits was inversely associated with live discharge and long lengths of stay (HR for death: 2.87, 95%CI: 2.47-3.33, p < 0.001). Nearly 40% of patients with dementia in our study experienced live discharge or a long length of stay. Additional research is needed to understand why home hospice may result in live discharge or a long length of stay for patients with dementia. Nurse visits were associated with death, suggesting their responsiveness to deteriorating patient health. Hospice guidelines may need to permit longer stays so community-dwelling patients with dementia, a growing segment of hospice patients, can remain continuously enrolled in hospice and avoid burden and costs associated with live discharge.