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This qualitative study examined the influence of hospice photography on patients' end-of-life experiences, families' experiences with hospice and grief, and hospice social work practice. Hospice photography was defined in this study as photographs of hospice patients taken by social workers in the service of legacy construction. Six social workers were interviewed about the photographs they had previously taken of patients. The themes revealed were categorized as hospice photography's perceived and potential effects on patients, families, and practice and the role of smartphone technology. The data suggested that hospice photography may positively affect patients, families, and practice due to its reported ability to build and enhance rapport, facilitate therapeutic discussion, affirm patients' dignity, worth, and self-esteem, provide opportunities for bearing witness, and increase social workers' job satisfaction. Potential effects of the use of hospice photography in social work practice included the ability to tangibly contextualize the end-of-life experience; improve termination and closure; and provide comfort during the grieving process.

Diverse strategies of analgesic adjustment are often, respectively, used to sustain analgesic efficiency for opioid-tolerant patients with different refractory factors of pain. In order to select effective analgesic adjustment strategy for hospice patient without knowing explicit causes of diminishing analgesic efficiency, a retrospective data of 743 patients among 3760 hospice patients were analyzed. The efficacy and adverse effects were not significantly different among analgesic adjustment strategies at each adjustment. Opioid duration was not associated with clinical characteristics. For opioid-tolerant hospice patients, the analgesic adjustment strategy can be selected for individual patient. After repeated analgesic adjustments, opioid tapering may also occur.

ABSTRACT Background Aim Design Methods Results Conclusion Patient or Public Contribution Hospice care for patients with advanced cancer mainly takes the family members and healthcare professionals as the main body and the patients as the object. There is a lack of relevant research on reflexive hospice care that considers patients as subjects.To explore the experience of reflexive hospice care for patients with advanced cancer.An empirical phenomenological approach to research was conducted.Data were collected using face‐to‐face semi‐structured interviews between April 3, 2024 and May 27, 2024 in the oncology wards of two comprehensive hospitals. Purposive sampling was used to recruit 18 patients with advanced cancer receiving hospice care. Colaizzi's phenomenological analysis method was used to analyse the data. We followed the consolidated criteria for reporting qualitative research (COREQ).Four themes were identified as being relevant to the experience of reflexive hospice care for patients with advanced cancer: the absence of prior awareness, reconciling with self and others, care and concern for others, and pursuing the meaning of life.This study provides new insights into hospice care for patients with advanced cancer. It emphasises the importance of patients' participation as subjects in hospice care. In reflexive hospice care, patients can actively participate and express their care for others and their understanding of life, thus gaining more respect and care in the end‐of‐life stage. Therefore, placing patients as the subjects of hospice care and fully respecting and listening to their wishes and needs is one of the most important ways to promote the development of hospice care quality.No patient or public contribution. [ABSTRACT FROM AUTHOR]

Introduction: Patients with terminal‐stage cancer frequently experience multiple symptoms simultaneously. Little is known about how core symptom clusters differ in advanced‐cancer patients with different survival expectancies receiving hospice care. To identify the core symptom clusters of hospice‐care cancer patients with different survival expectancies and compare the features of their symptom networks. Methods: In this retrospective study, secondary data analysis was conducted. Records of 6946 patients with advanced cancer who received home‐based hospice care service in a hospice center from April 2001 to December 2020 were collected and analyzed using network analysis. Results: This analysis included 6946 patients with advanced cancer receiving hospice care. In patients with survival expectancies of 0–6 months, loss of appetite was identified as the core symptom (rs = 4.03, rb = 5.21, rc = 2.63), and five symptom clusters were identified. Malnutrition was the core symptom in patients with survival expectancies of 6–12 months (rs = 2.83, rb = 2.43, rc = 0.93), and nine symptom clusters were identified. Wasting syndrome was the core symptom cluster in two groups. The network density of symptoms in patients with < 6 months of survival expectancy (91.99) was higher than in patients with 6–12 months (28.39). Conclusions: Nutrition impact symptoms are the core symptoms for home‐hospice care cancer patients with a survival period of 1 year or below. Moreover, hospice cancer patients with short survival expectancies have greater inter‐symptom impact. [ABSTRACT FROM AUTHOR]

Background: Risk perception with respect to death is a prerequisite for patients with advanced cancer when the time comes to make medical decisions. However, the nature of death risk perception remains unclear. Method: In-depth interviews were conducted with 28 patients with advanced cancer who were recruited from two hospitals and one home-based hospice in Fujian, China. Interviews were transcribed and directed content analysis applied. The Tripartite Model of Risk Perception was used as a theoretical framework. Results: Patients with advanced cancer perceived their risk of death in different ways. Professional communication about death risk and data-driven risk perception were common in clinical settings. Affective influences, inherent cognition, and comparisons to others or oneself also contributed to the subjects' self-perceived death risk. Conclusion: This theory-informed qualitative study clarifies the nature of the perceived risk of death among patients with advanced cancer. The study findings offer healthcare providers a more nuanced understanding of the perceived risk of death among patients with advanced cancer. [ABSTRACT FROM AUTHOR]

Objective Methods Results Conclusion To explore the clinical effect of a nurse‐centred multidisciplinary collaborative hospice care model in patients with advanced malignant tumours.A total of 30 patients with advanced malignant tumours were hospitalised and randomly divided into a study group and a control group, each consisting of 15 cases. The study group received nurse‐led multidisciplinary collaborative hospice care, whereas the control group underwent high‐quality nursing intervention. Variables such as the self‐rating anxiety scale (SAS) score, self‐rating depression scale (SDS) score, quality of life scale (EORTC QLQ‐C30) score, patient happiness, and nursing satisfaction were compared between the two groups.Post‐intervention, the SAS and SDS scores in the study group were lower than those in the control group (p < 0.01). The overall quality of life score of the study group was higher than that of the control group (p < 0.01). The Memorial University of Newfoundland Scale of Happiness scores in the study group also surpassed those of the control group (p < 0.01). Additionally, nursing satisfaction in the study group exceeded that of the control group (p = 0.027).The nurse‐led multidisciplinary collaborative hospice care model substantially alleviated negative emotions among patients, effectively improved their quality of life and happiness, and garnered positive evaluations of nursing satisfaction. [ABSTRACT FROM AUTHOR]

Background: Hospice care frequently includes hands-on care from hospice aides, but the need for hospice aide care may vary in residential settings (e.g., assisted livings and nursing homes). Objectives: The objective of this study is to compare hospice aide use and factors associated with use across residential settings. Design: This longitudinal cohort study used data from Medicare beneficiaries in the United States enrolled in the Medicare Current Beneficiary Survey (MCBS) who died between 2010 and 2019 and had hospice claims and available residential setting data in MCBS (n = 1,915). Analysis: Decedent hospice aide use was compared by residential settings; multivariable models controlling for sociodemographic, clinical/functional, and hospice characteristics examined factors associated with hospice aide care in different residential settings. Results: Hospice aide visits were least common in the community setting (64.4% vs. 76.6% vs. 72.6% with any hospice aide visits in community, assisted living, and nursing home, respectively, p = 0.001). In adjusted models, factors associated with hospice aide visits did not significantly differ by residential settings. Conclusions: Despite staff providing hands-on support in assisted livings and nursing homes, hospice aide visits were more common in residential as opposed to community settings, and factors associated with hospice aide visits were similar among settings. To maximize the potentially positive impact of hospice aides on overall care, additional work is needed to understand when hospice aides are used and how hospice aides collaborate with families and care teams. This will help to ensure that hospice care is appropriately tailored to individual care needs in all residential settings. [ABSTRACT FROM AUTHOR]

Copyright of Nővér is the property of Chamber of Hungarian Health Care Professionals and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Patients' spiritual needs are often marginalized by medical staff, who identify them with religious practice, faith, and God. Illness and related human suffering are not just physical ailments alone. The loss of health entails several changes in a patient's life and requires reorganization of the family, professional, social, and spiritual aspects of it. The purpose of this article is to analyze the medical personnel's sense of readiness to provide spiritual care to patients of oncology units and hospice facilities. Methods: The study was carried out with the use of the Spiritual Supporter Scale whose psychometric values were determined on a high level of reliability with Cronbach's a = 0.88. Results: The results of the Spiritual Supporter Scale showed that oncology professionals got significantly lower scores [median (Me) = 5; mean (M) = 5.11; standard deviation (SD) = 1.89] in the overall scale score than those who work in hospices (Me = 7; M = 6.9; SD = 1.5). The analysis also showed that oncology unit employees (54%), declared that providing spiritual care to patients is an integral part of their work (p < 0.02) significantly less often than those employed in hospices (88%). They were also less likely to declare (77%) that spiritual support is necessary in their workplace than persons who provide care in hospices (95%; p < 0.01). Conclusions: The study showed the differences in the sense of preparedness as well as competencies to provide spiritual care among medical workers in hospices and oncology units. [ABSTRACT FROM AUTHOR]

Copyright of Environmental & Social Management Journal / Revista de Gestão Social e Ambiental is the property of Environmental & Social Management Journal and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. Patients with blood cancers in a home care hospice setting have unique end-of-life experiences. [ABSTRACT FROM AUTHOR]

A home is a preferred place of death by most people. Nurses play a key role in supporting end-of-life home care, yet less is known about the factors that determine home as a place of death. This scoping review describes the percentage of actual places of death and determines social factors related to home as the place of death among noncancer patients with end-stage chronic health conditions. Inclusion criteria included (1) noncancer chronic illness conditions, (2) outcomes of place of death, and (3) factors that determine home as a place of death. Sources of evidence included PubMed, CINAHL, and Web of Science databases, which were searched in May 2022, and additional searches from May 2022 to November 2023.The JBI scoping review guide (2020) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review extension were used. Twenty-eight studies were included in this analysis. The range of percentages is varied within the same place of death among the sample. Two major constructs that determine a home as a place of death were identified: preceding factors and social capital. The results suggest that the place of death among noncancer patients with end-stage chronic health conditions should be continued to be understood. Two constructs determined home as a place of death and are considered as a fundamental to increasing equal accessibility in the initiation of palliative care services to promote home death and meet end-of-life care goals. [ABSTRACT FROM AUTHOR]

Background: Opioid misuse and substance use disorders (SUDs) including opioid use disorder (OUD) are common and negatively impact quality of life. Hospice clinicians' experiences with these conditions have not been well described. Objectives: We sought to explore hospice clinicians' knowledge, practices, and comfort caring for patients with opioid misuse (e.g., a pattern of unsanctioned opioid use escalation, or concurrent illicit substance use) and SUDs. Design: We recruited hospice clinicians in the United States via national hospice and palliative care organizations to complete an online survey designed by the study authors and pilot tested with an interdisciplinary group of current/former hospice clinicians. Results: One hundred seventy-five clinicians (40% nurses, 40% physicians, 16% nurse practitioners) responded to the survey; most had cared for two or more hospice patients with opioid misuse or SUD in the past month. The majority felt confident identifying opioid misuse (94%) and taking SUD histories (79%). Most (62%) felt it is their role to treat hospice patients for SUD, though 56% lacked comfort in using buprenorphine for OUD treatment. While the majority felt it is their role to treat pain in hospice patients with SUDs (94%) and that hospice can help patients with SUDs (94%), many were not comfortable managing pain in patients taking buprenorphine (45%) or naltrexone (49%) for SUDs. Most felt comfortable managing pain in patients taking methadone for SUD (73%). Conclusions: Opioid misuse and SUD are common in hospice. Though clinicians are comfortable taking relevant histories, they feel less comfortable managing patients' opioid misuse or SUD, or these patients' pain. [ABSTRACT FROM AUTHOR]

Background: Terminally ill patients can benefit from hospice care, which specifically addresses the needs of patients and families affected by terminal illness. However, there is a lack of standardized evaluation criteria to assess the quality of hospice care for terminally ill patients in the ICU, and it is impossible to evaluate the service quality of hospice care. To use the Delphi method to construct a hospice care system for terminally ill patients in ICU that meets clinical needs, and to provide theoretical support for nursing decision-making of terminally ill patients in clinical ICU.Methods: Obtain relevant literatures by entering specific key words into the database, the hospice care nursing system for terminally ill patients in ICU was preliminarily drawn up by literature analysis, and 24 experts in this field were consulted for 3 rounds by Delphi method to discuss the development status of hospice care and finally establish the hospice care nursing system.Results: In the three rounds of letter inquiries, the positive coefficients of experts were all high, the expert authority coefficient (Cr) were 0.864, 0.849, 0.832, and the expert opinion coordination coefficient(W) were 0.186, 0.319, 0.224; The system includes 8 first-level indicators, 27 second-level indicators and 9 third-level indicators.Conclusion: In this study, three rounds of Delphi consultation methods were used to construct an evaluation index system for the nursing quality of hospice care for ICU patients. The evaluation indicators formulated closely focus on the physiological and psychological characteristics of ICU patients, which can provide a better reference for ICU patients with advanced life in the future. [ABSTRACT FROM AUTHOR]

Volunteers provide important social support for homeless people. While motivations of the volunteer population for homeless people have been studied, little is known about volunteers for a hospice targeting the homeless population. The purpose of this study is to describe volunteer experiences and motivation at a hospice for homeless people during the COVID-19 pandemic. This study was conducted at a hospice for homeless individuals in Fall 2021. Data were collected by six virtual focus groups in November and December 2021. There were 21 participants. The recordings of the focus groups were automatically transcribed via ZOOM. The data were analyzed based on themes. This study has highlighted three main findings. First, honoring a loved one and being engaged in the community were two main reasons individuals began volunteering at the hospice center. Second, volunteers faced many challenges during the COVID-19 pandemic, including a slow start, increased use of technology, and constant change in volunteers' responsibilities due to safety reasons. During this time however, volunteers felt much support from the program staff. Third, interactions with staff, other volunteers and residents were the main reasons driving volunteer motivation. This project examined the under-studied subject of volunteers' experiences at a hospice for homeless people and provided insight in this topic. While the COVID-19 pandemic affected volunteering at a hospice for homeless people, support from the program staff and leadership helped sustain volunteer motivation. [ABSTRACT FROM AUTHOR]

Hospice care is to improve the quality of life and help patients die comfortably, peacefully and dignified by controlling pain and discomfort symptoms and providing physical, psychological and spiritual care and humanistic care in the final stage of the patient's life. Hospice care clients were primarily cancer patients at first and then slowly extended to other critically patients. Hospice care can alleviate the physical, psychosocial and mental problems of patients with advanced cancer, meet the diversified and multi-level health service needs of patients, improve the quality of life of patients and their families, and also save medical expenditure and improve the efficiency of medical resources. At present, there were few studies on hospice care for Chinese patients with advanced cancer. In this study, the needs of hospice care for patients with advanced cancer were reviewed from physical comfort and pain reduction, dignity maintenance, social support, and help calm death, and specific screening and evaluation tools for hospice care for patients with advanced cancer. And this study was summarized to review the influencing factors of hospice care in order to provide a reference for clinical hospice care practice for patients with advanced cancer in China. [ABSTRACT FROM AUTHOR]

Background: Oral anticoagulants (OACs) are effective in reducing the risk of cardioembolic stroke due to atrial fibrillation. While most nursing home residents with atrial fibrillation qualify for anticoagulation based on clinical guidelines, the net clinical benefits of OACs may diminish as residents approach the end of life. Methods: We conducted a cross‐sectional study of 30,503 US nursing home residents with atrial fibrillation (based on Minimum Data Set 3.0 and Medicare Part A records) who used OACs in the year before enrolling in hospice care during 2012–2016. Whether residents discontinued OACs before hospice enrollment was determined using Part D claims and date of hospice enrollment. Modified Poisson models estimated adjusted prevalence ratios (aPR). Results: Almost half (45.7%) of residents who had recent OAC use discontinued prior to hospice enrollment. Residents who were underweight (aPR: 1.02; 95% confidence interval [CI]: 1.01–1.03), those with high bleeding risk (aPR: 1.04, 95% CI: 1.03–1.05), and those with moderate or severe cognitive impairment (aPR: 1.02, 95% CI: 1.02–1.03) had a higher prevalence of OAC discontinuation before entering hospice. Residents with venous thromboembolism (aPR: 0.94, 95% CI: 0.93–0.96), statin users (aPR: 0.88, 95% CI: 0.87–0.89), and those on polypharmacy (≥10 medications, aPR: 0.72; 95% CI: 0.71–0.73) were less likely to discontinue OACs before enrollment in hospice. Conclusion: Anticoagulants are often discontinued among older nursing home residents with atrial fibrillation before hospice enrollment; it is not clear that these decisions are driven solely by net clinical benefit considerations. Further research is needed on comparative outcomes to inform resident‐centered decisions regarding OAC use in older adults entering hospice. [ABSTRACT FROM AUTHOR]

Pancreatic ductal adenocarcinoma has the lowest 5-y relative survival of all solid tumor malignancies. Palliative care can improve the quality of life of both patients and their caregivers. However, the utilization patterns of palliative care in patients with pancreatic cancer are unclear. Pancreatic cancer patients who were diagnosed between October 2014 and December 2020 at the Ohio State University were identified. Palliative care and hospice utilization and referral patterns were assessed. Of the 1458 pancreatic cancer patients, 55% (n = 799) were male, median age at diagnosis was 65 y (interquartile range [IQR]: 58, 73), and most were Caucasian (n = 1302, 89%). Palliative care was utilized by 29% (n = 424) of the cohort, with the initial consultation obtained after an average of 6 ± 9 mo from diagnosis. Patients who received palliative care were younger (62 y, IQR: 55, 70 versus 67 y, IQR: 59, 73; P < 0.001) and more frequently members of racial and ethnic minorities (15% versus 9%; P < 0.001) versus those who did not receive palliative care. Among the 344 (24%) patients who received hospice care, 153 (44%) had no prior palliative care consultation. Patients referred to hospice care survived a median of 14 d (95% CI, 12-16) after hospice referral. Only 3 out of 10 patients with pancreatic cancer received palliative care at an average of 6 mo from initial diagnosis. More than two out of every five patients referred to hospice had no previous palliative care consultation. Efforts to understand the impact of improved integration of palliative care into pancreatic cancer programs are needed. [ABSTRACT FROM AUTHOR]

Introduction. A handful of reports detail efforts to redesign traditional hospital gowns to address common concerns related to patient comfort and privacy for big bodied patients. Results suggest that improving gown design has the potential to improve both the patient and carer experience and satisfaction of care. Aim. This study aimed to ascertain the utility of gowns purposely designed for big bodied patients (named Xcellent Gowns) from a staff perspective. Methods. Qualitative semi-structured interviews were conducted in 2022 with 14 hospice staff members. Interview transcripts were uploaded to DedooseTM. Data were analysed utilising reflexive thematic analysis according to a six-phase process including data familiarisation, iterative data coding, and theme development and refinement. Results. The qualitative analysis of the interview data identified four main themes: (1) the gown experience, (2) fit-for-purpose, (3) love and dignity, (4) design principles. Each theme is presented and discussed with illustrative quotes from participants’ interview transcripts. Discussion. The perspectives of the staff participants in this study confirm research findings from other healthcare settings, that the patient and carer experience may be improved through focused redesign of this vital item of patient clothing. [ABSTRACT FROM AUTHOR]

Background: Racial and ethnic minoritized people with dementia (PWD) are at high risk of disenrollment from hospice, yet little is known about the relationship between hospice quality and racial disparities in disenrollment among PWD. Objective: To assess the association between race and disenrollment between and within hospice quality categories in PWD. Design/Setting/Subjects: Retrospective cohort study of 100% Medicare beneficiaries 65+ enrolled in hospice with a principal diagnosis of dementia, July 2012–December 2017. Race and ethnicity (White/Black/Hispanic/Asian and Pacific Islander [AAPI]) was assessed with the Research Triangle Institute (RTI) algorithm. Hospice quality was assessed with the publicly-available Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey item on overall hospice rating, including a category for hospices exempt from public reporting (unrated). Results: The sample included 673,102 PWD (mean age 86, 66% female, 85% White, 7.3% Black, 6.3% Hispanic, 1.6% AAPI) enrolled in 4371 hospices nationwide. Likelihood of disenrollment was higher in hospices in the lowest quartile of quality ratings (vs. highest quartile) for both White (adjusted odds ratio [AOR] 1.12 [95% confidence interval 1.06–1.19]) and minoritized PWD (AOR range 1.2–1.3) and was substantially higher in unrated hospices (AOR range 1.8–2.0). Within both low- and high-quality hospices, minoritized PWD were more likely to be disenrolled compared with White PWD (AOR range 1.18–1.45). Conclusions: Hospice quality predicts disenrollment, but does not fully explain disparities in disenrollment for minoritized PWD. Efforts to improve racial equity in hospice should focus both on increasing equity in access to high-quality hospices and improving care for racial minoritized PWD in all hospices. [ABSTRACT FROM AUTHOR]

Emergency medical services (EMS) systems are designed to provide care in the field and while transporting patients to a hospital; however, patients enrolled in hospice may not want invasive therapies nor benefit from hospitalization. For many reasons, encounters with hospice patients can be challenging for EMS systems, EMS clinicians, hospice clinicians, hospice patients, and their families. EMS clinicians should receive hospice-focused education that fosters a basic understanding of hospice, palliative therapies, and advance care planning documents (e.g., Physician Orders for Life Sustaining Treatment). This education should emphasize the ongoing development of end-of-life communication skills. EMS medical directors and local hospice organizations should collaborate to develop hospice patient-centered EMS protocols that address symptom management and delineate appropriate and goal concordant clinical interventions, and that are within the agency-level scope of practice for local EMS clinicians. Partnerships between EMS and hospice organizations can facilitate access to hospice teams who can provide clear guidance on whether to treat-in-place with follow-up care or to transport hospice patients to the hospital. EMS medical directors and local hospice organizations should collaborate to perform needs assessments of hospice patient EMS utilization. EMS medical directors should consider including a focus on EMS care of hospice patients as part of their overall quality management program(s). Ideally these efforts should be collaborative with local hospice agencies in order to facilitate meaningful process improvement strategies that include both EMS and hospice stakeholders. Reimbursement programs should reasonably compensate EMS agencies for scene treatment in place, as well as transport to alternative destinations such as in-patient hospice facilities. [ABSTRACT FROM AUTHOR]

Most people wish to die at home yet significant barriers exist in accessing care in one's home, especially for individuals with caregiver and/or housing instability. Across the U.S., residential homes for the dying are opening to address gaps in end-of-life care by recruiting community members to serve as caregivers to hospice patients during their final days. This paper describes a blended-experiential training program, informed by both an evidence-based educational framework and transformative learning theory, that trains undergraduate students to serve as surrogate family members to hospice patients in residential care homes. This study analyzed data from a sample of undergraduate students (n = 35) who participated in an 8-week program. Applying Kirkpatrick's evaluation model, study results indicate the program provided essential knowledge and skills in end-of-life care, benefiting both student learning outcomes and resident care. [ABSTRACT FROM AUTHOR]

Background: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community‐dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges. Methods: Semi‐structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes. Results: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well‐being: self‐care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end‐of‐life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression. Conclusions: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end‐of‐life issues. [ABSTRACT FROM AUTHOR]

Higher level of functional incapacity and invalidity is noted in palliative patients, as a result of disease progression, which is the reason for a significant decrease in the quality of life not only of these patients, but also of the family members who care for them. Physical therapy and occupational therapy are aimed at improving the patient's quality of life through rehabilitation measures to restore body function, ensure physical independence and activity, optimal physical condition and well-being, and patient adaptation in the environment. Aim: to review modern literary sources regarding the relevance of physical therapy and occupational therapy in palliative and hospice care. The search for literary sources was carried out in international scientometric databases: PubMed, Scopus, Web of Science, Google Scholar. The search depth is 13 years (from 2010 to 2022). The review indicates that physical therapy and occupational therapy in palliative and hospice medicine around the world are not used enough today. These two specialties of interdisciplinary treatment in palliative and hospice medicine play an important integral role, which is manifested in improving the quality of life of both patients and their family members who care for them through the use of a wide variety of methods. Hospice physical therapists not only help patients to support/keep functional abilities as long as possible, but also to reduce the burden on persons who care for terminally ill patients. Physical and occupational therapy have numerous benefits for patients with progressive life-threatening illnesses in palliative and hospice care. Physical therapy in palliative and hospice care can have a preventive, educational, and/or supportive function depending on the patient's situation. There is especially large deficiency in palliative physical therapy and occupational therapy among adolescents and young people, which requires wide implementation with high-quality training of relevant specialists. Physical therapy and occupational therapy play an important role in palliative and hospice care; all patients in palliative and hospice care, regardless of illness or severity, should have access to physical and occupational therapy based on individual needs. [ABSTRACT FROM AUTHOR]

Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. Design: Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program. Setting/Subjects: Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020. Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies. [ABSTRACT FROM AUTHOR]

To document how dementia diagnoses appear in hospice claims, and how these different presentations reflect different hospice utilization. The reliance in the hospice literature on primary diagnosis, in addition to the focus on decedents, may underestimate the true presence of dementia in hospice, and little is known about the health care utilization of hospice patients with dementia as a secondary or not present diagnosis. Secondary data analysis of Medicare claims. Medicare beneficiaries with 2 or more dementia diagnoses from 2016 to 2018 electing hospice in 2018. Beneficiaries were classified based on the presence and position of dementia on their subset of hospice claims: primary diagnosis, secondary diagnosis, and not present. We then compared the demographics and utilization of the 3 claim-based categories of dementia beneficiaries in hospice in 2018. Fewer than half of beneficiaries with a dementia diagnosis in all of their Medicare claims have dementia indicated as the primary diagnosis associated with their hospice claims, and 30% of beneficiaries did not have their diagnosed dementia appear at all on their hospice claims. Hospice length of stay and other utilization characteristics varied markedly across the 3 claim-based categories of dementia beneficiaries in hospice in 2018. Collectively, International Classification of Diseases, Tenth Revision (ICD-10) coding and sequencing conventions, coding practices, and research methods related to hospice claim diagnoses may unintentionally underestimate and oversimplify how dementia manifests in hospice utilization. [ABSTRACT FROM AUTHOR]

1. Identify structural factors associated with GIP utilization. 2. Apply knowledge regarding GIP utilization patterns to reflect on barriers and facilitators to GIP use in one's own practice. The Medicare hospice benefit includes general inpatient care to provide patients with access to aggressive symptom management. Rather than symptom burden alone determining its use, differential patterns in regional utilization suggest structural factors play an important role in access to this level of care. Nearly one in five persons experience severe pain while dying (1). Under the Medicare hospice benefit, general inpatient care (GIP) provides intensive symptom management in a hospital, freestanding hospice inpatient unit, or nursing home. The extent to which social and structural factors impact GIP access is unknown. To examine access to GIP based on patient and hospice characteristics. We conducted a retrospective cohort study of Medicare decedents who enrolled in hospice prior to death, using the National Health and Aging Trends Study (NHATS; 2011-2018). We identified hospice enrollment and GIP utilization through linked Medicare claims data. We collected data on hospice agencies from Medicare public use files and data on decedent characteristics from the NHATS survey. Using a multivariable model that accounted for the survey design of NHATS, we compared characteristics of participants who did and did not use GIP while enrolled in hospice. Among 1,080 decedents who received hospice services, 36.5% received GIP. In adjusted analyses, the two groups did not differ by age, sex, race, income, informal caregivers or location prior to hospice enrollment. Hospice age, profit status, census, average length of stay, and CAHPS recommend and rating top box values did not affect GIP utilization. Decedents located in the west of the United States were less likely to receive GIP (OR: 0.51, CI 0.27-0.96). Even after adjustment for patient and hospice characteristics, use of GIP varied by region of the United States. Regional differences exist in access to GIP level of care. Further research is needed to examine whether limited access impacts symptom amelioration among dying hospice patients. Hospice/Models of palliative/hospice care delivery [ABSTRACT FROM AUTHOR]

1. Through this case study, participants will find that patient care advocacy, even at the very end of life, can yield collaborative and creative approaches in providing patient-centered care. 2. This case study demonstrates that concurrent hospice care may be the most appropriate model of end-of-life care for patients with terminal anorexia. A case study from a Midwestern academic medical center shows that advocating for concurrent hospice care for a patient with terminal anorexia may help mitigate the challenges and controversy in defining and diagnosing the condition while still acknowledging a patient's poor prognosis and patient and family need for supportive services. Severe Enduring Anorexia Nervosa (SE-AN), also known as "terminal anorexia," is a rare, but life-threatening progression of restrictive and other eating-disordered behaviors. Recently clinical characteristics of SE-AN have been proposed with ongoing debate about the appropriateness and utilization of such guidelines. Those who work in palliative care and end of life are tasked with attenuating the suffering of patients with life-limiting or terminal illnesses. That challenge is heightened when the patient's condition is uncommon or when the care team has little experience with a particular clinical context. Given the relative youth of those with SE-AN coupled with the supposition of a terminal psychiatric disorder can bring discomfort to those charged with caring for patients with SE-AN. A case report from a Midwestern academic medical center about a 20-year-old woman with SE-AN provides an example of end-of-life care for this vulnerable population that is not guideline-focused, but patient-centered. When she enrolled in hospice, the hospice organization offered to cover ongoing treatment while simultaneously providing supportive care services to her and her family. She ultimately died on hospice, but the concurrent care model offers a pathway that acknowledges the care team's concern about poor prognosis while supporting any pivot toward life-prolonging treatment and simultaneously supporting the patient and family through this difficult scenario. Models of Palliative Care Delivery / Advocacy / Policy/ Regulations [ABSTRACT FROM AUTHOR]

1. Identify principles for determining what diagnoses and interventions are related to the terminal prognosis. 2. Describe an approach to working with emergency department clinicians to ensure their patients receive goal concordant care. Hospices are challenged to meet the needs of their patients, maintain financial viability of the hospice, and navigate the increasingly complex maze of regulations. This presentation will focus on guidelines for determining what diagnoses are related to the terminal prognosis, what interventions are the financial responsibility of the hospice, and when a patient might revoke the hospice benefit. The regulatory environment has become increasingly challenging for hospices. Programs are scrutinized for length of stay and levels of care, and Medicare has now reported concerns with care they believe should have been covered by the hospice but was paid for by Medicare outside the Medicare Hospice Benefit. This presentation will focus on guidelines for determining what diagnoses are related to the terminal prognosis, what interventions are the financial responsibility of the hospice, and when a patient might revoke the hospice benefit. The presentation will be relevant to any clinicians who provide hospice care or hospice off-hours call coverage. This will be a case-based presentation using patient scenarios to highlight the concept of a terminal prognosis, related diagnoses, and what interventions are the financial responsibility of a hospice organization. Included will be a review of the reasons for a live discharge from hospice. Situations where patients or families might consider revocation will also be discussed, as well as an approach to working with emergency department clinicians to appropriately triage and manage patients who may have called 911 to be sure that they receive goal-concordant care in coordination with the hospice team. At the conclusion of the session, attendees should be able to identify principles for determining what diagnoses and interventions are related to a patient's terminal prognosis, utilize a framework to approach questions regarding hospice coverage of medical interventions and revocation, and describe an approach to working with emergency department clinicians to ensure hospice patients receive goal-concordant care. Ethical / Legal Aspects of Care / Advocacy / Policy/ Regulations [ABSTRACT FROM AUTHOR]

1. Describe the signs and symptoms of terminal lucidity. 2. Integrate knowledge of terminal lucidity to guide prognostic expectations and advance care planning counseling. Terminal lucidity is the phenomenon wherein dying patients have a brief hyperactive period right before their passing. It is an unpredictable end of life experience predominantly researched in the dementia and neurologically impaired population. We present 3 cases of non-dementia patients with end stage cancer or advanced illness demonstrating this "last hurrah" period of clarity imminently before their death. "Terminal lucidity" describes a period of sudden mental clarity in the terminally-ill that is often fleeting. Also referred to as the "end of life rally" - it is a phenomenon wherein dying patients who have been encephalopathic or non-communicative unexpectedly regain neurobehavioral capabilities in the form of improved wakefulness, cognition, and even physical activities. While loved ones and even providers may consider this as a sign of clinical recovery, patients often die soon after the terminal lucidity event. Despite the term dating back to more than 250 years, there has been little research on the subject in the hospice and palliative care field, as it has typically been studied within the geriatric field in patients with dementia and other neurological conditions. We present a case series within the hospice and palliative care field among patients with non-dementia related advanced illnesses, such as malignancy, who experienced terminal lucidity. Not all patients experience terminal lucidity; moreover, it cannot be predicted which patients will. However, by recognizing this phenomenon, we hope to better identify potential shared risk factors as well as approaches for coping and managing prognostic expectations among caregivers/family and medical teams. Models of Palliative Care DeliveryManagement of Medical Interventions [ABSTRACT FROM AUTHOR]

Context: EMS providers frequently encounter patients in end-of-life situations. These situations can become ethically challenging depending on the nature of the event, availability of advance directives, and overall understanding of the situation by the patient and caregivers. This is particularly true for patients who are enrolled in Hospice, a specific form of end-of-life care available to patients with a terminal illness and expected lifespan of less than six months.Objectives: This study aimed to survey the state of Michigan's EMS providers regarding encounters with hospice patients to better understand challenges caring for this population and to identify any need for additional education.Methods: An anonymous electronic survey was distributed via agency medical directors and a statewide listserv to all licensed EMS providers. Responses were collected via RedCap. Descriptive statistics were calculated.Results: A total of 706 responses were received. Most responses were from paramedics (55%) or EMTs (34%). 96% indicated having at least one encounter with a hospice patient and 66% had greater than 10 encounters. Only 24% had received formal education on the care of hospice patients. A high percentage (86%) indicated interest in additional training in this area. Challenges identified among providers were inaccessible advance directives (72%), pressure from family for more aggressive treatment (61%), and difficulty contacting hospice personnel (48%).Conclusion: Educational gaps may be narrowed with additional end-of-life specific curricular components, with EMS providers expressing a strong desire for such training. [ABSTRACT FROM AUTHOR]

Context: Hospice aides provide essential direct care to hospice patients, yet there is minimal research examining hospice aide visits.Objectives: describe the prevalence and frequency of hospice aide visits, and 2) evaluate patient, community, and hospice characteristics associated with these visits.Methods: Longitudinal cohort study of Medicare Current Beneficiary Survey (MCBS) participants who died between 2010-2018 and received routine hospice care in the 6 months prior to death (n = 674). We characterized prevalence and frequency of hospice aide visits over time and used generalized linear modelling to identify factors associated with visits.Results: 64% of hospice enrollees received hospice aide visits and average visit frequency (1.3 per week) remained stable throughout enrollment. The only patient characteristic associated with receipt of hospice aide visits was primary hospice diagnosis (respiratory diagnosis vs. dementia: OR 0.372, P = 0.040). Those living in community-based residential housing and those cared for by hospices with aides employed as staff were more likely to receive any hospice aide visits (OR 2.331, P = 0.047 and OR 4.612, P = 0.002, respectively.) CONCLUSION: Hospice aide visits are a common component of hospice care, but visit frequency does not increase as death approaches. Receipt of hospice aide visits was primarily associated with community and hospice agency (rather than patient) characteristics. Future work is needed to ensure that hospice aides are integrated in the hospice interdisciplinary team and that access to hospice aide visits is meaningfully driven by patient and family needs, rather than the practice norms and business models of individual hospice agencies. [ABSTRACT FROM AUTHOR]

Objectives: The prevalence of end-stage renal disease (ESRD) and the number of patients undergoing dialysis in Taiwan are high. Since September 2009, the National Health Insurance has started to provide hospice care to patients with renal failure in Taiwan. Therefore, it is necessary to understand the use of hospice and nonhospice care in patients with ESRD on dialysis. We aim to understand trends in patients with ESRD receiving hospice and nonhospice care as well as medical care efforts during the last month of their lives (2009–2013). Materials and Methods: The cohort study was conducted using 1 million randomly selected samples from the Taiwan Health Insurance Research Database for millions of people in Taiwan in 2009–2013. Descriptive statistics were presented to summarize the characteristics of data. To compare differences between cohorts, Chi-square tests and Student's t-tests were used. Mann–Whitney U-tests were performed for nonnormally distributed data. Mantel–Haenszel test was test for trend. Results: We recruited 770 ESRD patients who underwent hemodialysis; among them, 154 patients received hospice care. Patients who received hospice care had a significantly longer survival time after removal of mechanical ventilator (20 vs. 0 days) and after discontinuation of dialysis (2 vs. 0 days) compared with those who did not receive hospice care. Patients who received hospice care had more pain control (61.04% vs. 17.37%, P < 0.0001) and other symptomatic control (55.84% vs. 43.18% with diuretics, P < 0.05; 64.29% and 48.21% with laxatives, P = 0.0004) medications than those who did not. Nevertheless, the overall medical cost in the hospice group was significantly lower (90 USD and 280 USD, P < 0.0001). Conclusion: Our results suggest that the addition of hospice care may permit patients a longer life-support-free survival time. In addition, despite a more frequent symptomatic controlling agent use, hospice care significantly reduced the overall medical expenditure. [ABSTRACT FROM AUTHOR]

Evidence for massage therapy (MT) in hospice patients remains limited. We conducted a prospective pilot study on MTs impact on quality of life of hospice patients and caregivers. Patient-caregiver dyads were enrolled if patients scored ≥5 on pain, depression, anxiety, or well-being using the revised Edmonton Symptom Assessment System Revised (ESAS-r). The patient received MT weekly for up to 3 massages with assessments completed at baseline, after each massage, and 1 week after the final massage for patients and at baseline and 1 week after final massage for caregivers. A satisfaction survey was completed at study completion. A pro-rated area under the curve (AUC) was utilized to assess the primary endpoints of change in ESAS-r for patient ratings of pain, depression and anxiety as well as the Linear Analogue Self-Assessment (LASA). Median difference scores (end of study value)-(baseline value) for each participant and caregiver were calculated. Of 27 patients and caregivers enrolled, 25 patients received MT. Fifteen patients completed all 3 MT sessions and were given the final symptom assessment and satisfaction survey and their caregivers completed final assessments. The proportion of patients considered success (AUC > baseline) in the primary endpoints were the following: pain 40.9%, depression 40.9%, anxiety 54.5%, LASA 54.5%. Median difference scores were largely zero indicating no significant temporal change in symptoms. Patients were highly satisfied with MT. This pilot study indicated that MT was a feasible and well-received intervention in our population of patients with inadequately controlled symptoms. [ABSTRACT FROM AUTHOR]

Context: There are concerns that policies aimed to prevent opioid misuse may unintentionally reduce access to opioids for patients at end-of-life.Objective: We assessed trends in opioid prescribing among patients on discharge from the hospital to hospice care.Methods: This was a retrospective cohort study among adult (age ≥18 years) patients discharged from a 544-576 bed, academic medical center to hospice care between January 1, 2010 to December 31, 2018. Study data were collected from a repository of patients' electronic health record data. Our primary outcome was the frequency of opioid prescribing on discharge to hospice care. Our primary exposure was the calendar year of discharge. We also investigated non-opioid analgesic prescribing and stratified opioid prescribing trends by patient characteristics (e.g., demographics, cancer diagnosis, and location of hospice care).Results: Among 2,648 discharges to hospice care, mean (standard deviation) age was 65.8 (16.0) years, 46.3% were female, and 58.7% had a cancer diagnosis. Opioid prescribing on discharge to hospice care decreased significantly from 91.2% (95% confidence interval (CI) = 87.1%-94.1%) in 2010 to 79.3% (95% CI = 74.3%-83.5%) in 2018 adjusting for age, sex, cancer diagnosis, and location of hospice care. Prescribing of non-opioid analgesic medications increased over the same time period.Conclusions: We observed a statistically significant decreasing trend in opioid prescribing on discharge to hospice care. Further research should aim to confirm these findings and to identify opportunities to ensure optimal pain management among patients transitioning to hospice care. [ABSTRACT FROM AUTHOR]

Context: Cardiopulmonary resuscitation is one of the most important end-of-life care decisions. However, the experience of bereaved families during code status discussions is not well documented.Objective: The aims of this study were to describe the degree of emotional distress of bereaved families when discussing code status, identify their perceived areas for improvement and determine associated factors.Methods: This study is part of a nationwide post-bereavement survey, the Japan Hospice and Palliative care Evaluation 3 (J-HOPE3) study. Questionnaires were sent to the relatives of cancer patients who had died in palliative care units in Japan in 2014.Results: From an analysis of 338 questionnaires, 37% of families reported high emotional distress during code status discussions and 32% reported a need for improvement. Multiple logistic regression analyses revealed the following were associated with high-level distress: the family had hoped for the miraculous and spontaneous recovery of the patient (odds ratio [OR] 2.4, 95% confidence interval [CI] 1.31-4.43, P = 0.0049), the family felt they could not voice their opinion about Cardiopulmonary resuscitation (OR 2.07, CI 1.12-3.81, P = 0.02), or the physician failed to adapt the explanation to the family's preparation level (OR 0.36, CI 0.18-0.68, P = 0.0015). Factors identified for improvement were: holding discussions in a relaxing atmosphere conducive to questioning (OR 0.36, CI 0.16-0.80, P = 0.012), and ensuring the physician adapted the explanation to the family's preparation level (OR 0.47, CI 0.23-0.96, P = 0.037).Conclusion: We recommend the development of educational programs for code status discussions to improve the experience of bereaved family members. [ABSTRACT FROM AUTHOR]

Background/Objectives: Psychotropic and opioid medications are routinely prescribed for symptom management in hospice, but national estimates of prescribing are lacking. Changes in Medicare hospice payment in 2014 provide the first opportunity to examine psychotropic and opioid prescribing among hospice beneficiaries, and the factors associated with use of specific medication classes. Design: Cross‐sectional analysis of a 20% sample of traditional and managed Medicare with Part D enrolled in hospice, 2014–2016. Setting: Beneficiaries enrolled in the Medicare hospice benefit. Participants: Medicare beneficiaries ≥65 newly enrolled in hospice between July 1, 2014 and December 31, 2016 (N = 554,022). Main outcome: Prevalence of psychotropic and opioid medication prescribing by class and factors associated with prescribing. Results: 70.3% of hospice beneficiaries were prescribed a psychotropic and 63.3% were prescribed an opioid. The most common psychotropic classes prescribed were: benzodiazepines (60.6%), antipsychotics (38.3%), antidepressants (18.4%), and antiepileptics (10.2%). Lorazepam (56.4%), morphine (52.8%), and haloperidol (28.6%) were received by the most beneficiaries. Prevalence of any psychotropic and opioid prescription was highest among beneficiaries who were female (76.7%), non‐Hispanic white (76.6%), and those with cancer (78.9%). Compared to white beneficiaries, non‐Hispanic black beneficiaries were less likely to receive nearly every class of medication, with significantly lower odds of receiving opioids (64.1% vs 57.9%; AOR 0.75, 95% CI 0.72–0.77) and benzodiazepines (61.6% vs 52.2%; AOR 0.66, 95% CI 0.64–0.68). Differences were seen across hospice diagnosis; those with cancer were more likely to receive opioids, benzodiazepines, and antipsychotics but less likely to receive antidepressants and antiepileptics. Conclusions: Psychotropic and opioid medications are frequently prescribed in hospice. Observed variations in prescribing across race and ethnicity may reflect disparities in prescribing as well as patient preferences for care. Further work is important to understand factors driving prescribing given limited studies surrounding medication prescribing in hospice. [ABSTRACT FROM AUTHOR]

Background: 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. Objective: Examine how home hospice and nurse visit frequency relate to dying in hospice within the Medicare‐intended 6‐month period. Design: Retrospective cohort study. Setting: Non‐profit hospice agency. Participants: Three thousand eight hundred and thirty seven patients with dementia who received hospice services from 2013 to 2017. Methods: 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. Results: 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). Conclusion: 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. See related editorial by Hunt et al. in this issue. [ABSTRACT FROM AUTHOR]

Context: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting.Objectives: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials?Methods: The characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial.Results: Overall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P < 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving.Conclusion: The benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process. [ABSTRACT FROM AUTHOR]

1. Using a think-pair-share approach, participants will compare and contast non-pharmacological and pharmacological approaches for various difficult to treat symptoms in both hospice and palliative care patients. 2. Upon completion of this activity, partcipants will be able to analyze difficult to treat symptoms in hospice and palliative care for the possible use of interventional approaches. This half-day workshop is designed for intermittent to advanced palliative and hospice providers looking to develop individualized treatment plans for difficult to manage symptoms within hospice and palliative care. Interdisciplinary faculty will present both non-pharmacological and pharmacological approaches to common and uncommon symptoms. The expert panel will prepare five patient cases to discuss with the audience. Possible topics include, but are not limited to, pain, nausea, dyspnea, delirium, cough, hiccoughs, secretions, anxiety, and depression. A pre-conference survey will be sent to "crowd-source" the audience to guide development of focused cases and discussion that are of most interest. Each symptom will be discussed in the context of prognosis, differentiating treatment for patients with months to years remaining versus days to weeks. A key point of emphasis is to provide participants with ample opportunity to actively engage with the expert panel and each other. Participants will be broken down into smaller groups to facilitate active discussion. A case will be presented, groups will think-pair-share, and then the conference faculty will provide concluding thoughts including available evidence/data. After these five cases have concluded, the audience will be given an opportunity to bring cases to discuss following a similar format described above albeit a shorter timeframe to maximize participant cases. Faculty will have additional cases prepared as for continued discussion as needed. [ABSTRACT FROM AUTHOR]

1. Outline the key benefits, challenges, and policy implications of concurrent care. 2. Compare concurrent care for children and new opportunities to provide it for adults through innovative hospice and palliative care models. 3. Increase their skill in using clear and consistent language to describe and advocate for concurrent care. 4. Synthesize the findings of a recent national convening and consider what they can do to advocate for supportive policies. When patients must quit disease-directed treatments to get palliative care, they suffer if they're not ready to make the tradeoff. Concurrent care for children and veterans should be expanded and guide efforts in other populations. National stakeholders recently gathered to find common language to promote concurrent care for all. Payment rules that make patients quit disease-directed treatments to get palliative care, such as dialysis restrictions for hospice patients, put those who aren't ready for the tradeoff in a bind and may extend their suffering. Lack of concurrent care options contributes to disparities in hospice care1. Concurrent care is now mandated for children and supported in the Veteran's Administration system. New alternative payment models may allow concurrent care, but access is limited. Lack of clarity in terminology used to describe concurrent care poses a policy challenge. A recent convening of national stakeholders focused on finding common language. 1. Introduce concurrent care and outline its policy implications, 2. Illustrate benefits and challenges of current and potential new models of concurrent care, 3. Highlight the need for clear and consistent language and 4. Consider how we can work together to promote broader access. In this panel discussion, hospice, pediatric, and public policy experts from AAHPM, the National Coalition for Hospice and Palliative Care (Coalition), and the National Hospice and Palliative Care Organization (NHPCO) will discuss the benefits, challenges, and policy implications of concurrent care, illustrate how it works for children, highlight opportunities for adults in innovative hospice and palliative care programs, and report on the proceedings of a national stakeholder convening to define concurrent care hosted by the Coalition and NHPCO on February 6, 2024. To ensure that people with serious illness always receive the right care at the right time, we need policies that support concurrent disease-directed and palliative care. Advocacy/Policy/Regulations/Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Participants will self-report the ability to define concurrent care in Veterans admitted to hospice with a diagnosis of heart failure. 2. Participants will better understand the prevalence of advanced heart failure therapies utilized by Veterans admitted to hospice with heart failure. We aim to explore the utilization and prevalence of concurrent hospice care in VA patients with heart failure to create a standardized definition of concurrent care in this hospice population. Concurrent hospice care may one day become an option for all Medicare-eligible citizens, however it has been available to VA patients since 2009. Prior studies in the VA population have shown that concurrent care in hospice patients with cancer has allowed for Veterans to continue active, disease-modifying cancer treatment (radiation, chemotherapy) and have also shown a reduction in aggressive medical treatments, ICU stays, and costs. Limited data exist regarding the use of concurrent care in heart failure patients. Using a national VA data set, we will identify Veteran patients admitted to the hospital with complications of severe heart failure between 2010 and 2020. Patients will be excluded if they were previously on hospice prior to the index hospital admission. For the purposes of this study, concurrent care will be defined as a patient who was enrolled in hospice (VA or Medicare) following a random hospital admission and later received advanced heart failure therapies. Receipt of concurrent care will be determined by confirmation of receipt of advanced heart failure therapies via specific CPT codes following enrollment in hospice. Additionally we plan to collect data regarding burdensome transitions to analyze whether there are differences between hospice patients who did and did not receive concurrent care. 1) Define concurrent care in Veterans admitted to hospice with a diagnosis of heart failure. 2) Determine the prevalence of advanced heart failure therapies in Veterans admitted to hospice with heart failure. 3) Explore whether heart failure patients receiving concurrent hospice care experience fewer burdensome transitions. Disease specific management; Patient Outcomes [ABSTRACT FROM AUTHOR]

Context: Episodic breathlessness is a distressing and difficult to treat symptom because of its short duration. Fast actioned intranasal fentanyl (INF) is potentially more suitable than oral opioids.Objectives: To examine the feasibility, preliminary efficacy, and safety of INF for the treatment of episodic breathlessness from advanced nonmalignant conditions in hospice patients.Methods: Phase IIB, double-blind, randomized controlled, multisite, INF citrate solution vs. placebo crossover feasibility study. Opioid-tolerant patients were to treat six episodes of breathlessness using INF spray. The primary outcome was change in the Visual Analogue Scale for dyspnea (VAS-D) score from baseline to 15 minutes after study drug's administration (VAS-D15). Other outcomes were to collect demographic data and determine the use of rescue medications, safety, and feasibility of the study design.Results: Twenty-one of 49 eligible patients were enrolled, and 19 (90%) patients completed the study. The mean difference in VAS-D15 between fentanyl and placebo was -3.37 mm (95% CI = -10.35 to 3.61 mm; P = 0.337). There was no statistically significant or clinically meaningful difference between INF and placebo in relieving the sensation of discomfort in episodic breathlessness. No significant drug-related adverse event or detrimental effect on vital signs was observed.Conclusion: We found no difference between INF and placebo in relieving episodic breathlessness in nonmalignant conditions. INF was well tolerated, and the study design proved to be feasible in hospice patients with advanced diseases. Future study using higher concentration of fentanyl solution may be warranted. [ABSTRACT FROM AUTHOR]