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Context: Given that the composition of hospice patients’ terminal diagnoses has become increasingly diverse, understanding whether hospices provide quality care to patients, regardless of disease, is important. However, data comparing diagnosis and caregiver-reported outcomes remain scarce. Objectives: To analyze the association between the composition of patients’ terminal diagnoses and caregiver-reported quality measures. Methods: Using cross-sectional, publicly available data from the Centers for Medicare & Medicare Services (CMS), we analyzed data collected from 2015–2019. We conducted general linear model analyses to identify associations between hospice characteristics/practices and caregiver-reported outcomes. Results: Of the 2810 hospices, those that cared for a greater percentage of dementia patients had fewer caregivers, on average, who rated hospice a 9 or 10 (where 0 = low, 10 = high; β = −.094; 95% CI = −.147, −.038), reported they always received help for pain and symptoms (β = −.106, CI = −.156, −.056), and reported definitely having received the training they needed (β = −.151, CI = −.207, −.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (β = −.184, CI = .252, −.115), reported they always received help for pain and symptoms (β = −.188, CI = −.251, −.126), reported definitely having received the training they needed (β = −.254, CI = −.324, −.184), and reported that the hospice offered the right amount of emotional/spiritual support (β = −.056, CI = −.093, −.019). Conclusion: Hospices that cared for a greater proportion of dementia and stroke patients had poorer scores on caregiver-reported quality measures. These findings support efforts to identify mechanisms underlying these differences and to design strategies to ensure optimal outcomes for hospice patients regardless of diagnosis.

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Caregivers of individuals with Alzheimer's disease and related dementias experience significant burden and adverse outcomes. Enhancing caregiver self-efficacy has the potential to mitigate these negative impacts, yet little is known about its relationship with other aspects of caregiving. This study examined the relationship between self-efficacy and outcomes; identified factors associated with self-efficacy; examined the mediating role of self-efficacy; and analyzed whether there were racial/ethnic differences.Data from caregivers (Two self-efficacy subscales predicted caregiver depression, burden, and positive aspects of caregiving. Being White, a spouse, or having a larger social network predicted lower self-efficacy for obtaining respite. Higher income and lower preparedness predicted lower self-efficacy for controlling upsetting thoughts and responding to disruptive behaviors. Self-efficacy for controlling upsetting thoughts mediated the relationship between preparedness and depression along with the relationship between preparedness and burden. Race/ethnicity did not improve model fit.Self-efficacy plays an important role in caregiver outcomes. These findings indicate that strategies to improve caregiver self-efficacy should be an integral component of caregiver interventions.

With the growth of palliative and hospice care, patients with a terminal illness and their family caregivers have opportunities to pursue care focusing on alleviation of symptoms and optimizing quality of life in the home setting. However, caregivers are often overburdened with caregiving responsibilities leading to poor physical and mental health. Given the importance of family caregivers for patients who elect to receive hospice/palliative care at home along with the negative outcomes associated with caregiving, conducting a review of caregiver interventions is critical to understand what has been studied and identify gaps in the field. A scoping review was conducted to describe interventions focused on family caregivers providing care to terminally ill patients who receive palliative/hospice care in the home setting. Variables collected included intervention delivery details, study population, participant demographics, and measured outcomes. Our search yielded 14,527 articles, of which 70 articles on 54 unique interventions were included in the final analysis. Over three-quarters (77.8%) of the interventions were conducted in North America and Europe. Interventions commonly aimed to reduce the physical burden of caregiving (53.7%), educate the caregiver (53.7%), and improve psychological well-being (48.1%). The majority (58.6%) of the articles evaluated interventions for feasibility outcomes. The lack of studies in non-Western countries points to a cultural disparity in this field. Secondly, despite the variety of interventions, religious and spiritual needs in palliative care need to be further addressed. As palliative and hospice care is an emerging area of research, most studies are still implementing interventions and assessing feasibility.

Objectives: Morbidity and mortality are higher in older adults with COVID-19, but their decisions about aggressive care, severity of disease, and outcomes during the first surge in New York City are not well characterized. We sought to determine if the oldest patients chose intubation and comfort care at different rates compared to younger geriatric patients. We also studied outcomes among patients admitted with severe disease and those who chose aggressive versus comfort care. Methods: This retrospective analysis used electronic health record data from patients 65 years and older at two medical centers in New York City admitted between 3/5/2020 and 5/15/2020. The primary outcome was comfort care orders, and secondary outcomes included death, palliative care consultation, goals of care discussion, code status, and ventilator weaning. Results: Of the 854 patients, 214 were in the oldest old (OO, age > = 85) group, 269 middle old (MO, age 75-84), and 371 young old (YO, age 65-74). Among those with serious disease, the OO were more likely to choose comfort care (45% vs. 21% MO and 6.8% YO), less likely to be intubated (17% vs. 37% MO and 44% YO), more likely to have a palliative care consult, more likely to be DNR/DNI on admission (60% vs. 17% MO and 9.3%% YO), and more likely to die during admission (65% vs. 42% MO and 21% YO) (all p-values < 0.001). Of all 216 intubated patients, 78% of the OO died, versus 66% of the MO and 36% of the YO (p =

Hospice and palliative care research aim to build a knowledge base to guide high-quality care for people with serious illness and improve their quality of life. Considering its focus on patient and family caregiver's experiences, hospice and palliative care research activities primarily take place in real-world clinical settings where seriously ill patients and their family caregivers receive care (eg, nursing homes, clinics, inpatient units). Conducting research in these settings poses many challenges because researchers, clinicians, and administrators may have different priorities-and scientific control is difficult. Therefore, clinician-researcher-administrator collaboration in planning and conducting studies is critical for successful hospice and palliative care research. For an effective collaboration, clinicians, researchers, and site administrators must be considered equal partners. Each collaborator brings their unique expertise, knowledge, and skills that when combined can strengthen scientific rigor, feasibility, and success of the project, as well as have study outcomes that are more translatable to real-world practice. However, little guidance exists to give actionable steps to build collaborative partnerships for hospice and palliative care researchers. The purpose of this article is to describe the process of forming successful clinician-researcher-administrator collaborations through five phases of the research life cycle: idea generation, partnership, proposal writing, research process, and dissemination. Exemplars are drawn from the authors' experiences conducting collaborative research and highlight strategies and resources for successful hospice and palliative care collaborations.

Background: A majority of hospice care is delivered at home, with significant caregiver involvement. Identifying factors associated with caregiver-reported quality measures could help improve hospice care in the United States. Objectives: To identify correlates of caregiver-reported quality measures: burden, satisfaction, and quality of end-of-life (EoL) care in home hospice care. Design: A cross-sectional study was conducted from April 2017 through February 2018. Setting/Subjects: A nonprofit, urban hospice organization. We recruited caregivers whose patients were discharged from home hospice care. Eligible caregiver participants had to be 18 years or older, English-speaking, and listed as a primary caregiver at the time the patient was admitted to hospice. Measures: The (1) short version of the Burden Scale for Family Caregivers; (2) Family Satisfaction with Care; and (3) Caregiver Evaluation of the Quality of End-Of-Life Care. Results: Caregivers (n = 391) had a mean age of 59 years and most were female (n = 297, 76.0%), children of the patient (n = 233, 59.7%), and non-Hispanic White (n = 180, 46.0%). The mean age of home hospice patients was 83 years; a majority had a non-cancer diagnosis (n = 235, 60.1%), were female (n = 250, 63.9%), and were non-Hispanic White (n = 210, 53.7%). Higher symptom scores were significantly associated with greater caregiver burden and lower satisfaction with care; but not lower quality of EoL care. Caregivers who were less comfortable managing patient symptoms during the last week on hospice had higher caregiver burden, lower caregiver satisfaction, and lower ratings of quality of EoL care. Conclusion: Potentially modifiable symptom-related variables were correlated with caregiver-reported quality measures. Our study reinforces the important relationship between the perceived suffering/symptoms of patients and caregivers' hospice experiences.

Context Rates of psychological symptoms for patients with serious illness are high, but there has been limited research investigating psychological symptoms at the very end of life (EOL). Objectives To better understand the prevalence, severity, and correlates of psychological distress at the very EOL. Methods This retrospective cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their care recipient recently died while receiving home hospice care and invited to participate in a brief interview with a trained research assistant. Patient, caregiver, and hospice utilization data were also abstracted from electronic medical records, and caregiver burden scores were assessed via interview. Results A total of 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate-to-severe anxiety, as assessed with a score of ≥4 on the Edmonton Symptom Assessment Scale and 43% had moderate-to-severe symptoms (Edmonton Symptom Assessment Scale score ≥ 4) of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with patient age. Conclusion Psychological symptom management at the very EOL is essential to providing comprehensive hospice care. Our study revealed that nearly half of all home hospice patients experience moderate-to-severe symptoms of anxiety and/or depression in the last week of life. Future research is needed to improve psychological symptom management at the very EOL to improve the quality of life for both patients and their families.

Purpose of review Cancer has a high incidence and death rate among older adults. The objective of this article is to summarize current literature about communication between older adults and medical professionals in cancer care. Our article addresses four categories related to communication: first, ageism; second, screening; third, treatment; and fourth, end of life (EoL) care. Recent findings Current literature suggests that cancer treatment for older patients may be influenced by ageist biases. Older patients prefer that clinicians incorporate health status to individualize screening decisions although some patients don't consider life expectancy to be an important factor in screening. Patients often agree with the oncologists' treatment recommendations but want to be involved in the decision-making process. Lastly, work is being conducted to associate quality communication of EoL issues with hospital performance measures. Summary Patients are at risk of age-based disparities in cancer screening, treatment, and EoL care. Older adults are not a homogenous group and all elderly cancer patients need to have an individualized approach to care. Medical professionals must understand patients' goals and values and involve them in shared decision-making and preparation for EoL.

Context Hospice deaths in the U.S. are increasing. Dying hospice patients may have rapidly emerging needs the hospice team cannot immediately meet, exposing family caregivers to fright-inducing (i.e., scary) situations. Objectives To examine relationships between hospice care and family caregiver exposures and psychological responses to witnessing common and distressing patient symptoms near the end of life. Methods Secondary analysis of prospective cohort study of 169 patients with advanced cancer and their family caregivers was analyzed. Multivariable regression analyses modeled associations between hospice use and caregiver exposures and psychological responses (fear and helplessness) to witnessing distressing symptoms common near death, adjusting for potential confounding influences (e.g., home death, patient characteristics, and suffering). Caregiver self-reported exposures and responses to observing patient symptoms during the last month of life were assessed using the validated Stressful Caregiving Response to Experiences of Dying (SCARED) scale. Results Hospice care was significantly positively associated with more exposures and negative psychological responses to distressing patient symptoms, adjusting for home death, patient characteristics, and physical and mental suffering. On average, hospice patients' caregivers scored 1.6 points higher on the SCARED exposure scale and 6.2 points higher on the SCARED psychological response scale than caregivers of patients without hospice (exposure: 10.53 vs. 8.96; psychological responses: 29.85 vs. 23.67). Patient pain/discomfort, delirium, and difficulty swallowing/choking were reported by three-fourths of caregivers and associated with the most fear and helplessness among caregivers. Conclusion Hospice care is associated with more exposures to and caregiver fear and helplessness in response to scary patient experiences. Research is needed to understand how better to support family caregivers of hospice patients to enable them to cope with common distressing symptoms of dying cancer patients. Hospice clinicians providing additional education and training about these symptoms might enable caregivers to better care for dying loved ones and reduce the stresses of end-of-life caregiving.

Background: Symptoms (e.g., pain, shortness of breath, and fatigue) at the end of life (EoL) are common. Although symptoms can contribute to poor quality of life at the EoL, much remains unknown regarding their prevalence and correlates in home hospice care. Objectives: To determine the prevalence and correlates of caregiver-reported symptoms in home hospice patients during the last week before discharge using the Edmonton Symptom Assessment Scale (ESAS). Design: This is a cross-sectional study measuring perceived patient symptoms using caregiver proxy data. Bivariate and multivariate analyses were conducted to examine patient and caregiver characteristics associated with ESAS scores. Setting/Subjects: Subjects were from an urban nonprofit home hospice organization. Measurements: Symptoms were measured using the ESAS. Results: The mean ESAS score was 51.2 (SD ±17.4). In bivariate analyses, higher perceived symptom score was associated with younger patient age (p

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care. Meeting the information needs of this group is critical in improving their experience in hospice. Objectives: To identify the information needs of informal home hospice caregivers. Design: One hundred five semi-structured phone interviews with informal caregivers were conducted. Study data were analyzed using a standard qualitative method (ie, content analysis). Participants: Informal home hospice caregivers whose loved ones have been discharged (death or live discharge) from an urban, nonprofit hospice organization. Measured: Participants’ information needs were ascertained by assessing whether information regarding hospice was or was not fully explained or whether there was information they wished they knew prior to the hospice transition. Results: Among study participants, 48.6% had unmet information needs related to (1) general information about hospice (n = 17, 16.2%), (2) what to expect at the EoL (n = 19, 18.1%), and (3) support provided by hospice (n = 30, 28.6%). Specifically, caregivers expressed the need for more information on what hospice is, caring for a dying patient, and the day-to-day care hospice provides. Conclusion: Our study indicates that approximately half of the informal caregivers had unmet information needs. Further research is needed to identify efficacious strategies to best meet the information needs of this group. Specific topics that need emphasis include what hospice care is, what to expect at the EoL, and what level of support hospice offers.

Introduction: We sought to determine the prevalence and risk factors associated with fecal incontinence (FI) in the home hospice setting. Methods: We conducted a retrospective cohort study of patients served by a hospice agency. Data on patient characteristics were extracted from hospice medical records. The primary outcome, FI, was assessed routinely during clinical visits to the patient’s home. Descriptive statistics were used to summarize patient characteristics. A Cox proportional hazards regression model was estimated for FI to examine associations with sociodemographic and clinical characteristics of patients. Results: A total of 15 432 patients were eligible. Patients were female (59.0%) and 75 years or older (23.5% were 75-84; 39.9% were 85+). Most patients with FI indicated incontinence at the time of hospice admission (64.5%; n = 4314), with the average onset period being approximately 18 days from admission (mean = 17.9, standard deviation = 50.6). Increasing age represented a risk factor for FI (hazard ratio [HR] = 1.01 [confidence interval, CI = 1.01-1.01]). The absence of a health-care proxy was associated with an increased risk of FI (HR = 1.11 [CI = 1.04-1.19]). Greater risk of FI was observed among patients with dementia (HR = 1.34 [1.24-1.46]) and stroke (HR = 1.42 [1.26-1.60]) compared to patients with cancer. Patients referred to hospice from settings other than the hospital also had a greater risk of FI compared to those referred from the hospital (HR = 1.17 [1.11-1.23]). Conclusion: Fecal incontinence is a highly prevalent condition among home hospice patients and most patients indicated FI upon admission (median time to detection = 18 days). Further studies are needed to identify modifiable risk factors for FI detection and its symptom management in this patient population.

With the increasing use of mobile devices (e.g., smart phones, tablets) in our everyday lives, people have the ability to communicate and share information faster than ever before. This has led to the development of promising applications aimed at improving health and healthcare delivery for those with limited access. Hospice care, which is commonly provided at home, may particularly benefit from the use of this technology platform. This commentary outlines several potential benefits and pitfalls of incorporating mobile health (mHealth) applications into existing home hospice care while highlighting some of the relevant telemedicine work being done in the palliative and End-of-Life care fields.

Background: Over 10% of hospice patients experience a transition out of hospice care during the last months of life. Hospice transitions from home to hospital (ie, hospital-related hospice disenrollment) result in fragmented care, which can be burdensome for patients and caregivers. Nurses play a major role in delivering home hospice care, yet little is known about the association between nursing visits and disenrollment. Objectives: The study’s purpose is to examine the association between the average number of nursing visits per week and hospital-related disenrollment in the home hospice population. We hypothesize that more nursing visits per week will be associated with reduced odds for disenrollment. Design: A retrospective cohort study using Medicare data. Participants: Medicare hospice beneficiaries who were ≥18 years old in 2012. Outcome measured: Hospitalization within 2 days of hospice disenrollment. Results: The sample included 115 103 home hospice patients, 6450 (5.6%) of whom experienced a hospital-related disenrollment. The median number of nursing visits per week was 2 (interquartile range 1.3-3.2), with a mean of 2.5 (standard deviation ±1.6). There was a decreased likelihood of a hospital-related disenrollment when comparing enrollments that had Conclusions: More nursing visits per week was associated with a decreased likelihood of a hospital-related hospice disenrollment. Further research is needed to understand what components of nursing care influence care transitions in the home hospice setting.

Background: Many patients live with serious chronic or terminal illnesses. Multicomponent palliative care interventions have been increasingly utilized in patient care; however, it is unclear what is being implemented and who is delivering these interventions. Objectives: To (1) describe the delivery of multicomponent palliative care interventions, (2) characterize the disciplines delivering care, (3) identify the components being implemented, and (4) analyze whether the number of disciplines or components being implemented are associated with positive outcomes. Design: Systematic review. Study Selection: English-language articles analyzing multicomponent palliative care interventions. Outcomes Measured: Delivery of palliative interventions by discipline, components of palliative care implemented, and number of positive outcomes (eg, pain, quality of life). Results: Our search strategy yielded 71 articles, which detailed 64 unique multicomponent palliative care interventions. Nurses (n = 64, 88%) were most often involved in delivering care, followed by physicians (n = 43, 67%), social workers (n = 33, 52%), and chaplains (n = 19, 30%). The most common palliative care components patients received were symptom management (n = 56, 88%), psychological support/counseling (n = 52, 81%), and disease education (n = 48, 75%). Statistical analysis did not uncover an association between number of disciplines or components and positive outcomes. Conclusions: While there has been growth in multicomponent palliative care interventions over the past 3 decades, important aspects require additional study such as better inclusion of key groups (eg, chronic obstructive pulmonary disease, end-stage renal disease, minorities, older adults); incorporating core components of palliative care (eg, interdisciplinary team, integrating caregivers, providing spiritual support); and developing ways to evaluate the effectiveness of interventions that can be readily replicated and disseminated.

Background: Crises that occur in home hospice care affect family caregivers’ satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined. Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization. Measurements: Participants were asked to identify any crisis—defined as a time of intense distress due to a physical, psychological, and/or spiritual cause—they or the patient experienced, while receiving home hospice care. Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis. Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.

Rates of psychological symptoms for patients with serious illness is high, but there has been limited research investigating psychological symptoms at the very end of life. The aim of this study was to better understand the prevalence, intensity and correlates of psychological distress at the very end of life. This cross-sectional study utilized caregiver proxy interviews. Caregivers were contacted after their loved one recently died after being on home hospice and invited to participate in a brief interview with a trained research assistant. Patient, caregiver and hospice utilization data were also abstracted from electronic medical records. N = 351 caregivers were included in the study. According to caregivers, 46.4% of patients had moderate to severe anxiety, as assessed with a score of ≥4 on the Edmonton Symptom Assessment Scale (ESAS) and 43% had moderate to severe symptoms of depression in the last week of life. Symptoms of anxiety and depression were significantly associated with caregiver burden scores and inversely associated with the age of the patient. Psychological symptom management at the very end of life is essential to providing comprehensive hospice care. Our study revealed that nearly half of patients die with moderate to severe symptoms of anxiety and/or depression. Future research is needed to improve psychological symptom management at the very end of life in order to improve the quality of life for both patients and their families.

Background: Mobile health applications (mHealth apps) represent a rapidly emerging technology that is being used to improve health-care delivery. In home hospice, informal caregivers play an essential role in attending to the day-to-day needs of their terminally ill loved ones. Using mHealth apps by caregivers in this setting could potentially improve the support provided to both patients and caregivers at the end of life (EoL). Objectives: To explore informal caregivers’ receptivity and concerns in using mHealth apps along with app features, caregivers perceived to be most useful in home hospice care. Design: Eighty semistructured phone interviews were conducted with informal caregivers who received care from a nonprofit hospice organization. Study data were analyzed using content analysis, coding for themes of receptivity and interest. Results: Sixty-two (78%) participants were receptive to using an mHealth app in home hospice care. Informal caregivers were interested in features that addressed: (1) communication to improve patient care (n = 44, 70%), (2) access to patient care information (n = 30, 48%), (3) education (n = 24, 39%), and (4) updates from health-care personnel and scheduling services (n = 10, 16%). Conclusions: A substantial majority of informal caregivers voiced receptivity to using mHealth apps and expressed interest in features that enhance communication and provide information to improve patient care. Although more research is needed to examine how to incorporate this technology into existing home hospice care, our study suggests that informal caregivers are likely to use this technology they feel will help enhance home-based EoL care delivery.

BACKGROUND: The transition into home hospice care is often a critical time in a patient’s medical care. Studies have shown patients and caregivers desire continuity with their physicians at the end of life (EoL). However, it is unclear what roles primary care physicians (PCPs) play and what challenges they face caring for patients transitioning into home hospice care. OBJECTIVES: To understand PCPs’ experiences, challenges, and preferences when their patients transition to home hospice care. DESIGN: Nineteen semi-structured phone interviews with PCPs were conducted. Study data were analyzed using standard qualitative methods. PARTICIPANTS: Participants included PCPs from 3 academic group practices in New York City. MEASURED: Physician recordings were transcribed and analyzed using content analysis. RESULTS: Most PCPs noted that there was a discrepancy between their actual role and ideal role when their patients transitioned to home hospice care. Primary care physicians expressed a desire to maintain continuity, provide psychosocial support, and collaborate actively with the hospice team. Better establishment of roles, more frequent communication with the hospice team, and use of technology to communicate with patients were mentioned as possible ways to help PCPs achieve their ideal role caring for their patients receiving home hospice care. CONCLUSIONS: Primary care physicians expressed varying degrees of involvement during a patient’s transition to home hospice care, but many desired to be more involved in their patient’s care. As with patients, physicians desire to maintain continuity with their patients at the EoL and solutions to improve communication between PCPs, hospice providers, and patients need to be explored.

Background: Despite the documented benefits of palliative and hospice care on improving patients’ quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients’ and caregivers’ lack of knowledge and misperceptions. Objectives: To examine palliative and hospice care awareness, misperceptions, and receptivity among community-dwelling adults. Design: Cross-sectional study. Subjects: New York State residents ≥18 years old who participated in the 2016 Empire State Poll. Outcomes Measured: Palliative and hospice care awareness, misperceptions, and receptivity. Results: Of the 800 participants, 664 (83%) and 216 (27%) provided a definition of hospice care and palliative care, respectively. Of those who defined hospice care, 399 (60%) associated it with end-of-life care, 89 (13.4%) mentioned it was comfort care, and 35 (5.3%) reported hospice care provides care to patients and families. Of those who defined palliative care (n = 216), 57 (26.4%) mentioned it provided symptom management to patients, 47 (21.9%) stated it was comfort care, and 19 (8.8%) reported it was applicable in any course of an illness. Of those who defined hospice or palliative care, 248 (37.3%) had a misperception about hospice care and 115 (53.2%) had a misperception about palliative care. Conclusions: Most community-dwelling adults did not mention the major components of palliative and hospice care in their definitions, implying a low level of awareness of these services, and misinformation is common among community-dwelling adults. Palliative and hospice care education initiatives are needed to both increase awareness of and reduce misperceptions about these services.

Approximately 25% of hospice disenrollments in the United States occur as the result of hospitalization, which can lead to burdensome transitions and undesired care. Informal caregivers (e.g., spouses, children) play a critical role in caring for patients on home hospice. Research examining hospital-related disenrollment among these patients is limited.To understand the events surrounding the hospitalization of patients discharged from home hospice through the perspective of their informal caregivers.Thirty-eight semistructured phone interviews with caregivers were conducted, and data regarding the events leading to hospitalization and hospice disenrollment were collected. Study data were analyzed by using qualitative methods.Subjects included caregivers of 38 patients who received services from one not-for-profit home hospice organization in New York City. Participants were English speaking only.Caregiver recordings were transcribed and analyzed by using content analysis.Content analysis revealed four major themes contributing to hospitalization: (1) distressing/difficult-to-witness signs and symptoms, (2) needing palliative interventions not deliverable in the home setting, (3) preference to be cared for by nonhospice physicians or at a local hospital, and (4) caregivers not comfortable with the death of their care recipient at home. Over half of all caregivers called 911 before calling hospice.Our study provides insight into the events leading to hospitalization of home hospice patients from the caregivers' perspective. Further research is needed to quantify the drivers of hospitalization and to develop interventions that reduce utilization, while improving care for home hospice patients and their caregivers.

The World Health Organization, one of the leading authorities on pain management, stressed the need for further guidelines to help manage pain in patients with chronic disease. In light of the impact of pain on morbidity and quality of life, this article summarizes current knowledge about pain experienced by older adults in 3 advanced non-cancer-related chronic diseases (ie, congestive heart failure, end-stage renal disease, and stroke) in which pain is common but not typically a primary focus of disease management. This article examines the data on the prevalence of pain, co-occurring symptoms, and challenges in managing pain in these conditions.

Background: Over 10% of hospice patients experience at least 1 care transition 6 months prior to death. Transitions at the end of life, particularly from hospice to hospital, result in burdensome and fragmented care for patients and families. Little is known about factors that predict hospitalization in this population. Objectives: To develop and validate a model predictive of hospitalization after enrollment into home hospice using prehospice admission risk factors. Design: Retrospective cohort study using Medicare fee-for-service claims. Participants: Patients enrolled into the Medicare hospice benefit were ≥18 years old in 2012. Outcome Measured: Hospitalization within 2 days from a hospice discharge. Results: We developed a predictive model using 61 947 hospice enrollments, of which 3347 (5.4%) underwent a hospitalization. Seven variables were associated with hospitalization: age 18 to 55 years old (adjusted odds ratio [95% confidence interval]: 2.94 [2.41-3.59]), black race (2.13 [1.93-2.34]), east region (1.97 [1.73-2.24]), a noncancer diagnosis (1.32 [1.21-1.45]), 4 or more chronic conditions (8.11 [7.19-9.14]), 2 or more prior hospice enrollments (1.75 [1.35-2.26]), and enrollment in a not-for-profit hospice (2.01 [1.86-2.18]). A risk scoring tool ranging from 0 to 29 was developed, and a cutoff score of 18 identified hospitalized patients with a positive predictive value of 22%. Conclusions: Reasons for hospitalization among home hospice patients are complex. Patients who are younger, belong to a minority group, and have a greater number of chronic conditions are at increased odds of hospitalization. Our newly developed predictive tool identifies patients at risk for hospitalization and can serve as a benchmark for future model development.

Transcatheter aortic valve replacement offers patients with severe aortic stenosis an opportunity to live longer and better lives. Although this procedure allows clinicians to treat sicker and frailer patients who cannot undergo open heart surgery, age-related comorbidities, specifically cognitive impairment, must factor into the evaluation process.

Little is known about HIV-infected patients with serum testosterone levels in high normal to elevated ranges. An HIV-infected patient with hepatitis C and unexplained high serum testosterone levels prompted a retrospective chart review into the association of hepatitis C and serum testosterone levels greater than 1000 ng/mL in our clinic. The charts of 1419 male HIV patients were reviewed. Out of 1419 patients, 159 (11%) met the criteria for data analysis. A total of 8 patients had serum testosterone levels greater than 1000 ng/mL. There was no significant correlation between hepatitis C antibody positivity or presence of hepatitis C viremia as measured by viral load, nor was there any significant correlation with CD4+ cell counts. We found a weak positive association between years since reported diagnosis of HIV and high testosterone levels.