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

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

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

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

Interventions for behavioral health comorbidities in the hospice setting: a scoping review.

BACKGROUND: Behavioral health (BH) comorbidities in hospice patients are widespread and impact important outcomes, including symptom burden, quality of life, and caregiver wellbeing. However, evidence-based BH interventions tailored for the hospice setting remain understudied. METHODS: We conducted a scoping review with the objective of mapping studies of interventions for BH comorbidities in the hospice setting. We included empirical studies among hospice patients of interventions with BH outcomes. We abstracted data on study design, intervention type, and patient characteristics. RESULTS: Our search generated 7,672 unique results, of which 37 were ultimately included in our analysis. Studies represented 16 regions, with the United Kingdom (n=13) most represented. The most frequent intervention type was complementary and alternative interventions (n=13), followed by psychotherapeutic interventions (n=12). Most of the studies were either pilot or feasibility investigations. Fifteen studies employed a randomized controlled trial design. The most frequently utilized measurement tools for BH outcomes included the Hospital Anxiety and Depression Scale and the Edmonton Symptom Assessment Scale. Seventeen studies demonstrated statistically significant results in a BH outcome measure. BH conditions prevalent among hospice patients that were the focus of intervention efforts included depression symptoms, anxiety symptoms, and general psychological distress. No study focused on trauma-related disorders or substance use disorders. CONCLUSIONS: This scoping review reveals a concerning gap in research regarding evidence-based BH interventions in hospice settings, especially in the U.S. Despite extensive utilization of hospice care services and the high prevalence of BH conditions among hospice patients, randomized controlled trials focused on improving BH outcomes remain scant. The current BH practices, like the widespread use of benzodiazepines and antipsychotics, may not be rooted in robust evidence, underscoring an urgent need for investment in hospice research infrastructure and tailored clinical trials to test behavioral approaches to mitigate mental health outcomes at the end of life.

Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.

BACKGROUND: Terminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don't receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention. METHODS: The I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient's family caregiver. One hundred caregivers will be randomized to hospice care with (n = 50) or without (n = 50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers' comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction). CONCLUSION: The trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.

Black Caregivers' Symptom Management, Cultural, and Religious Experiences With Home Hospice Care.

CONTEXT: Informal Black or African American (Black/AA) caregivers are at high risk for caregiver burden due to both greater caregiving responsibilities and unmet needs. However, there has been minimal research on the challenges Black/AA caregivers face after hospice enrollment. OBJECTIVES: This study seeks to address this knowledge gap by applying qualitative methods to understand Black/AA caregivers' experiences around symptom management, cultural, and religious challenges during home hospice care. METHODS: Data from small group discussions with 11 bereaved Black/AA caregivers of patients who received home hospice care were qualitatively analyzed. RESULTS: Caregivers struggled most with managing patients' pain, lack of appetite, and decline near end of life (EoL). Cultural needs (e.g., knowing their language, having familiarity with foods) were perceived as not on top of mind for many Black/AA caregivers. However, there was a concern of stigma around mental health preventing care recipients from sharing their mental health concerns and seeking resources. Many caregivers relied on their personal religious networks rather than services provided by hospice chaplains. Lastly, caregivers reported increased burden during this phase of caregiving but were satisfied with the overall hospice experience. CONCLUSION: Our results suggest that tailored approaches that target mental health stigma in the Black/AA community and reduce caregiver distress around end of life symptoms may improve hospice outcomes among Black/AA hospice caregivers. Hospice spiritual services should consider offering services complementary to caregivers' existing religious networks. Future qualitative and quantitative studies should examine the clinical implications of these results in terms of patient, caregiver, and hospice outcomes.

The relationship of caregiver self-efficacy to caregiver outcomes: a correlation and mediation analysis.

OBJECTIVES: 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. METHODS: Data from caregivers (N = 243) were collected from the Caring for the Caregiver Network study. Participants' level of self-efficacy, depression, burden, and positive aspects of caregiving was assessed using validated measures. RESULTS: 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. CONCLUSION: 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.

Choices and Outcomes of the Oldest Old Admitted During the First Wave of COVID-19 in New York City.

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 = <0.001). Conclusions: Adults 85 and above admitted with COVID-19 were more likely to forego intubation and die with comfort-based care. Irrespective of intubation choice, patients 85 and older had a markedly poorer prognosis than other cohorts over 65.

Hospice Composition Based on Diagnosis is Associated with Caregiver-Reported Quality Measures.

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; ß = -.094; 95% CI = -.147, -.038), reported they always received help for pain and symptoms (ß = -.106, CI = -.156, -.056), and reported definitely having received the training they needed (ß = -.151, CI = -.207, -.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (ß = -.184, CI = .252, -.115), reported they always received help for pain and symptoms (ß = -.188, CI = -.251, -.126), reported definitely having received the training they needed (ß = -.254, CI = -.324, -.184), and reported that the hospice offered the right amount of emotional/spiritual support (ß = -.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.

Objective Scoring of Physiologically Induced Dyspnea by Non-Invasive RF Sensors.

OBJECTIVE: Dyspnea, also known as the patient's feeling of difficult or labored breathing, is one of the most common symptoms for respiratory disorders. Dyspnea is usually self-reported by patients using, for example, the Borg scale from 0 - 10, which is however subjective and problematic for those who refuse to cooperate or cannot communicate. The objective of this paper was to develop a learning-based model that can evaluate the correlation between the self-report Borg score and the respiratory metrics for dyspnea induced by exertion and increased airway resistance. METHODS: A non-invasive wearable radio-frequency sensor by near-field coherent sensing was employed to retrieve continuous respiratory data with user comfort and convenience. Self-report dyspnea scores and respiratory features were collected on 32 healthy participants going through various physical and breathing exercises. A machine learning model based on the decision tree and random forest then produced an objective dyspnea score. RESULTS: For unseen data as well as unseen participants, the objective dyspnea score can be in reasonable agreement with the self-report score, and the importance factor of each respiratory metrics can be assessed. CONCLUSION: An objective dyspnea score can potentially complement or substitute the self-report for physiologically induced dyspnea. SIGNIFICANCE: The method can potentially formulate a baseline for clinical dyspnea assessment and help caregivers track dyspnea continuously, especially for patients who cannot report themselves.

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors.

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.

Building Strong Clinician-Researcher Collaborations for Successful Hospice and Palliative Care Research.

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.

Associations Between Hospice Care and Scary Family Caregiver Experiences.

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.

Caregiver-Reported Quality Measures and Their Correlates in Home Hospice Care.

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.

Identifying the Prevalence and Correlates of Caregiver-Reported Symptoms in Home Hospice Patients at the End of Life.

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 < 0.001), younger caregiver age (p < 0.001), having a cancer diagnosis (p = 0.006), and lower caregiver comfort level managing symptoms (p < 0.001). Regression model analyses showed that younger patient age (p = 0.0009, p = 0.0036) and lower caregiver comfort level managing symptoms (p = 0.0047, p < 0.0001) were associated uniquely with higher symptom scores. Conclusions: Multiple symptoms of high severity were perceived by caregivers in the last week on home hospice. Patient age and caregiver comfort level in managing symptoms were associated with higher symptom scores. Further work is needed to improve management and treatment of symptoms in this care setting.

Prevalence, Severity, and Correlates of Symptoms of Anxiety and Depression at the Very End of Life.

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.

Perceptions of a Home Hospice Crisis: An Exploratory Study of Family Caregivers.

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.

Communication involving special populations: older adults with cancer.

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.

Home Hospice Caregivers' Perceived Information Needs.

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.