Home Hospice Research Articles

Training Opportunities for Managers in Home Health, Hospice, and Community-Based Care Settings.

The aim of this study was to identify areas for developing management skills-focused continuing education for managers working in home health, hospice, and community-based settings. Healthcare managers play a vital role in organizations, yet they have a range of management training. Researchers conducted a cross-sectional survey of managers at a large Visiting Nurse Association. Descriptive and bivariate analyses were performed to examine confidence in management skills by respondent characteristic. Factor and cluster analyses were used to examine differences by role. For all 33 management tasks, managers with 6+ years of experience reported greater confidence than managers with 0 to 5 years of experience. Tasks with the lowest confidence were budgeting, interpreting annual reports, strategic planning, measuring organizational performance, and project planning. Managers were clustered into 5 "profiles." Management training is not 1-size-fits-all. Healthcare organizations should consider investing in training specific to the identified low-confidence areas and manager roles to better support and develop a robust management workforce.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

Influencing factors of home hospice care needs of the older adults with chronic diseases at the end of life in China: a cross-sectional study.

Chronic diseases are becoming a serious threat to the physical and mental health of older people in China as their aging process picks up speed. Home hospice care addresses diverse needs and enhances the quality of life for older adult individuals nearing the end of life. To ensure the well-being of chronically ill older adults at the end of life, it is vital to explore and assess the multidimensional hospice needs of terminally ill older individuals in their homes. The aim of this study was to investigate the current situation of home hospice care needs of Chinese older adults with chronic diseases at the end of life, and to analyze the influencing factors (sociodemographic and disease-related factors). In this cross-sectional study, 247 older adult people with chronic diseases at the end of life were selected from the communities of 4 community health service centers in Jinzhou City, Liaoning Province from June to October 2023 by random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Independent samples t-test or one-way ANOVA was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. The total score of home hospice needs of the dying older adult was 115.70 ± 12, with the mean scores for each dimension in descending order being Information Needs (3.96 ± 0.61), Social Support Needs (3.96 ± 0.44), Spiritual Needs (3.92 ± 0.43), Physical Needs (3.60 ± 0.59), Psychological Needs (3.37 ± 0.65). Status of residence, duration of illness (year), the type of disease, and self-care ability were influential factors in the total score of home hospice needs. The need for hospice care for the terminally ill older adult is high, and healthcare professionals should implement services according to the influencing factors of need to meet their multidimensional needs and improve their quality of life.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

Patterns of care at the end of life: a retrospective study of Italian patients with advanced breast cancer.

To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death. One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected. 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support. Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy.

Advance Care Planning (ACP) in Medicare Beneficiaries with Heart Failure

BackgroundHeart failure is a leading cause of death in the USA, contributing to high expenditures near the end of life. Evidence remains lacking on whether billed advance care planning changes patterns of end-of-life healthcare utilization among patients with heart failure. Large-scale claims evaluation assessing billed advance care planning and end-of-life hospitalizations among patients with heart failure can fill evidence gaps to inform health policy and clinical practice.ObjectiveAssess the association between billed advance care planning delivered and Medicare beneficiaries with heart failure upon the type and quantity of healthcare utilization in the last 30 days of life.DesignThis retrospective cross-sectional cohort study used Medicare fee-for-service claims from 2016 to 2020.ParticipantsA total of 48,466 deceased patients diagnosed with heart failure on Medicare.Main MeasuresBilled advance care planning services between the last 12 months and last 30 days of life will serve as the exposure. The outcomes are end-of-life healthcare utilization and total expenditure in inpatient, outpatient, hospice, skilled nursing facility, and home healthcare services.Key ResultsIn the final cohort of 48,466 patients (median [IQR] age, 83 [76–89] years; 24,838 [51.2%] women; median [IQR] Charlson Comorbidity Index score, 4 [2–5]), 4406 patients had an advance care planning encounter. Total end-of-life expenditure among patients with billed advance care planning encounters was 19% lower (95% CI, 0.77–0.84) compared to patients without. Patients with billed advance care planning encounters had 2.65 times higher odds (95% CI, 2.47–2.83) of end-of-life outpatient utilization with a 33% higher expected total outpatient expenditure (95% CI, 1.24–1.42) compared with patients without a billed advance care planning encounter.ConclusionsBilled advance care planning delivery to individuals with heart failure occurs infrequently. Prioritizing billed advance care planning delivery to these individuals may reduce total end-of-life expenditures and end-of-life inpatient expenditures through promoting use of outpatient end-of-life services, including home healthcare and hospice.

A Delphi Approach to Define Lucid Episodes in People Living With Dementia.

Lucid episodes (LEs: unexpected episodes of spontaneous, meaningful, and relevant communication or behavior) in Alzheimer disease and related dementias are a new area of scientific inquiry that lacks clinical consensus and require more conceptual attention. We aimed to measure consensus from an expert group on: (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical context to LEs; and (3) interpretation of LEs. We convened 13 experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) to identify elements of LEs. Experts provided a range of opinions on medical and clinical explanations and questions to understand LEs. Consensus on LEs when presented with clinical vignettes was not reached. Panelists highlighted key medical and contextual factors needed to make a definitive judgement about LEs. There is variability in how LEs are interpreted by clinical experts, which complicates the identification of LEs in Alzheimer disease and related dementias.

Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice

Transitions in care settings following live discharge from hospice care are burdensome for patients and families. Factors contributing to risk of burdensome transitions following hospice discharge are understudied. To identify factors associated with 2 burdensome transitions following hospice live discharge, as defined by the Centers for Medicare & Medicaid Services. This population-based retrospective cohort study included a 20% random sample of Medicare fee-for-service beneficiaries using 2014 to 2019 Medicare claims data. Data were analyzed from April 22, 2023, to March 4, 2024. Live hospice discharge. Multivariable logistic regression examined associations among patient, health care provision, and organizational characteristics with 2 burdensome transitions after live hospice discharge (outcomes): type 1, hospice discharge, hospitalization within 2 days, and hospice readmission within 2 days; and type 2, hospice discharge, hospitalization within 2 days, and hospital death. This study included 115 072 Medicare beneficiaries discharged alive from hospice (mean [SD] age, 84.4 [6.6] years; 71892 [62.5%] female; 5462 [4.8%] Hispanic, 9822 [8.5%] non-Hispanic Black, and 96 115 [83.5%] non-Hispanic White). Overall, 10 381 individuals (9.0%) experienced a type 1 burdensome transition and 3144 individuals (2.7%) experienced a type 2 burdensome transition. In adjusted models, factors associated with higher odds of burdensome transitions included identifying as non-Hispanic Black (type 1: adjusted odds ratio [aOR], 1.47; 95% CI, 1.36-1.58; type 2: aOR, 1.70; 95% CI, 1.51-1.90), hospice stays of 7 days or fewer (type 1: aOR, 1.13; 95% CI, 1.06-1.21; type 2: aOR, 1.71; 95% CI, 1.53-1.90), and care from a for-profit hospice (type 1: aOR, 1.78; 95% CI, 1.62-1.96; type 2: aOR, 1.32; 95% CI, 1.15-1.52). Nursing home residence (type 1: aOR, 0.66; 95% CI, 0.61-0.72; type 2: aOR, 0.47; 95% CI, 0.40-0.54) and hospice stays of 180 days or longer (type 1: aOR, 0.63; 95% CI, 0.59-0.68; type 2: aOR, 0.60; 95% CI, 0.52-0.69) were associated with lower odds of burdensome transitions. This retrospective cohort study of burdensome transitions following live hospice discharge found that non-Hispanic Black race, short hospice stays, and care from for-profit hospices were associated with higher odds of experiencing a burdensome transition. These findings suggest that changes to clinical practice and policy may reduce the risk of burdensome transitions, such as hospice discharge planning that is incentivized, systematically applied, and tailored to needs of patients at greater risk for burdensome transitions.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study.

With increased life expectancy in the Chinese population coupled with chronic disease the care needs of people at the end of life are attracting much attention. Home hospice care can help the dying older adult achieve comfort and maintain their dignity at home. However, dying at home means great responsibility and challenge for family caregivers, and there are many unmet needs. The study aimed to investigate the home hospice care needs of family caregivers of older adult people with chronic diseases at the end of life in China, and to analyze the influencing factors of home hospice care needs of caregivers. In this cross-sectional study, from May to September 2023, 4 community health service centers were selected by stratified sampling from seven administrative districts in Jinzhou City, Liaoning Province, where home hospice care was piloted. Then 224 family caregivers were selected from the communities of seven community service centers by simple random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Univariate analysis was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. The total score of hospice care needs of family caregivers was 121.61 ± 15.24, among which the end-of-life knowledge need dimension score was 24.04 ± 2.71, the highest score index was 80.13%, while the symptom control need score was 15.58 ± 3.39, the lowest score index was 62.32%. In addition, Caregivers with caregiving experience, dying older adult with longer disease duration, and dying older adult with higher levels of education were the factors influencing the total need for home hospice care among family caregivers, with a variance explained of 22.7%. The needs of family caregivers of the terminally ill older adult are high, and healthcare professionals should implement services to meet their multidimensional needs and improve the quality of care according to the factors affecting their needs.

Go With The Flow: Lessons from Providing High Flow Oxygen on Home Hospice

Go With The Flow: Lessons from Providing High Flow Oxygen on Home Hospice

'Tausi Feagaiga: A Project to Train Caregivers and Empower the American Samoan Community.

The 'Tausi Feagaiga (Covenant Keeper) project was a partnership to support the traditional values of tausi matua (caring for one's elders). The partners included a non-governmental organization (Pacific Youth and Community Development), a faith-based organization (Roman Catholic Diocese of Samoa-Pago Pago), and an institute of higher education (University of Hawai'i John A. Burns School of Medicine). The project was created to address the lack of community-based health care such as home health or hospice, and families needing to work outside the home. A culturally based caregiving curriculum was developed to educate caregivers and improve their knowledge and skills. Using a train-the-trainer model, 125 caregivers were trained in family caregiving from 2016-2020. Training was conducted through an intensive workshop followed by practicum at Hope House, the Catholic Diocese home for the aged. Participants who expressed a willingness and competency were mentored to be trainers to continue the 'Tausi Feagaiga project. The mean self-rated confidence in caregiving improved significantly from 3.17 ± 1.02 (mean SD) pre workshop to 3.53 ± 0.71 post workshop (P = .001). Competence in geriatric syndromes was improved from 18.04 ± 4.27 to 21.31 ± 4.30 after attending the workshop (P < .001) and the feedback was extremely positive. Technical assistance was provided to obtain funding through American Samoa Medicaid State Agency to improve the existing infrastructure of Hope House, obtain much needed supplies, and increase ability to hire the participants. 'Tausi Feagaiga positively impacted the lives of the residents of Hope House, the course participants, the elders in the community, and those who care for them.

Use of Subcutaneous Ketamine for Refractory Pain in Home Hospice Patients: A Case Report

Use of Subcutaneous Ketamine for Refractory Pain in Home Hospice Patients: A Case Report

Ease and Efficacy of Subcutaneous Ketamine for Depression in Home Hospice Patients: 2 Case Reports

Ease and Efficacy of Subcutaneous Ketamine for Depression in Home Hospice Patients: 2 Case Reports

Perspectives on Social Determinants and Home Hospice Care during COVID-19

Perspectives on Social Determinants and Home Hospice Care during COVID-19

Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians.

The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients' unmet needs and quality of life (QoL)-related concerns. Participants from all 4 groups were approached within 2 months after the patient's admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient's QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding. In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying. The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns. While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.

A Structured Home Health and Hospice Clinical Rotation and Onboarding Model to Address the Nursing Shortage.

North Carolina home health and hospice agencies are experiencing serious shortages of registered nurses (RNs), particularly in rural areas. These shortages can negatively impact patients and families by delaying access to care and possibly resulting in avoidable hospitalizations/rehospitalizations. Many home health and hospice agencies do not hire newly graduated RNs due to limited patient care experience, limited or no opportunity for home health/hospice clinical rotations, and the autonomous nature of providing care in the home. The Hospice and Home Health Foundation of North Carolina was awarded a $468,196 3-year grant, and, in collaboration with key stakeholders, developed a model for clinical rotation experiences in home health and hospice settings for RN students as well as an onboarding model for newly graduated RNs. Seven home health and hospice project partner agencies were selected to pilot the models. This article describes program implementation and evaluation. We used a survey method and site visit interviews to assess program effectiveness. Students provided positive feedback about the clinical rotation and more than 80% indicated their clinical rotation met "most" or "almost all" of their learning needs. The focus group interviews provided substantive anecdotal examples to validate the survey results.

Home Health Care and Hospice Use Among Medicare Beneficiaries With and Without a Diagnosis of Dementia.

Background: Home health care is a core benefit of Medicare and Medicaid insurance programs and includes services to improve health, maintain health, or slow health decline. Objective: To examine the relationship between home health care use during the last three years of life and hospice use in the last six months of life among Medicare beneficiaries with and without dementia. Design: Nationally representative retrospective cohort study. Setting/Subjects: Medicare beneficiaries with at least three years of continuous enrollment who died in 2019 in the United States (n = 2,169,422). Measurements: The primary outcome was hospice use, and the secondary outcome was hospice duration. The independent variable was a composite of the presence and timing of home health care initiation during the last three years of life. Results: Home health care was used by 46.4% of Medicare beneficiaries and hospice care was used by 53.1% of beneficiaries, with 28.3% using both. Compared with beneficiaries who did not use home health care, those who started home health care before the last year of life (odds ratio [OR] = 1.57, 95% confidence interval [CI] = 1.56-1.58) or during the last year of life (OR = 1.75, 95% CI = 1.74-1.77) were more likely to use hospice. The effects were stronger in those without a diagnosis of dementia (OR = 1.92, 95% CI = 1.90-1.94) compared with those without a dementia diagnosis (OR = 1.34, 95% CI = 1.32-1.35) who started home health in the final year of life. Conclusions: Receiving home health care in the final years of life is associated with increased hospice use at the end-of-life in Medicare beneficiaries with and without a dementia diagnosis.

Mixed-Methods Study of End-of-Life Experiences of Patients With Hematologic Malignancies in Social Hospice Residential Home Care Settings.

Hospice is underutilized by patients with hematologic malignancies (HM), and when patients are referred, they are typically more ill, hospitalized, and with shorter length of stay (LOS) than patients with solid tumors (ST), limiting research about home hospice care experiences of patients with HM. In this mixed-methods study, we examined the hospice experiences of patients with HM who died at residential care homes (RCHs), home-based settings in which volunteer caregivers and hospice staff provide end-of-life (EOL) care under the social hospice model. We queried a registry of 535 hospice patients who died at RCHs between 2005 and 2020 that included quantitative medication administration data as well as qualitative data from hospice intake forms and written volunteer caregiver narratives. Qualitative data were analyzed by collective case study methodology. Quantitative comparisons of LOS and liquid morphine use were performed with matched patients with ST. The registry yielded 29 patients with HM, of whom qualitative data were available for 18 patients. Patients with HM exhibited common EOL symptoms (pain, dyspnea, and agitation). Instances of bleeding were low (22%), and notable HM-specific care concerns were described regarding bone fractures, skin integrity, and delirium. Most (78%) experienced good symptom management and peaceful or comfortable deaths. In only one case were symptoms described as severe and poorly managed. Patients with HM had comparable LOS on hospice and at the RCHs to patients with ST, with no group differences in liquid morphine use. In this registry cohort, most patients with HM achieved good symptom management in home care settings with volunteer caregivers and hospice support. Caregivers may require additional counseling and palliative medications for HM-specific EOL symptoms.

A Structured Home Care and Hospice Clinical Rotation and Onboarding Model to Address the Nursing Shortage.

A Structured Home Care and Hospice Clinical Rotation and Onboarding Model to Address the Nursing Shortage.

Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization

ObjectiveThis hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare utilization. Study designRetrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) home visit through two HBHPC programs in the Midwest from 1/1/2013 through 12/31/2018. Descriptive statistics were calculated for healthcare utilization variables. Paired t-test or Wilcoxon signed-rank test compared the changes in healthcare utilization the year prior to and year after initial provider home visits. ResultsThe cohort included 195 individuals (49% female), with diagnoses comprised of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed reductions in median [IQR] number of ICU days (before HV 12 [4, 37] after HV 0 [0, 8], p<0.001); inpatient admissions (before HV 1 [1, 3] after HV 1 [0, 2], p=0.005); and number of inpatient days (before HV 5 [1, 19] after HV 2 [0, 8], p=0.009). There was an increase in clinically relevant phone calls (CRPC) to the HBHPC team (before HV 1 [0, 4] vs after HV 4 [1, 7], p<0.001) and calls to the HBHPC team before emergency department visits (before HV 0 [0, 0] vs after HV 1 [1, 2], p<0.001). ConclusionHBHPC provider home visits were associated with decreased inpatient admissions, hospital days, and ICU days, and increased CRPC and phone calls prior to emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient utilization and increased utilization of the HBHPC team.