Black women's perspectives on bladder health: Social-ecological and life course contexts.

AIMS: This paper explores Black women's perspectives on bladder health using a social-ecological conceptual framework and life course perspective. METHODS: We conducted a directed content analysis of data from the Study of Habits, Attitudes, Realities, and Experiences (SHARE), a focus group study by the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium. Analysis was conducted on data from five focus groups and a member-checking session where all participants self-identified as Black or African American. RESULTS: Forty-two participants aged 11-14 or 45+ years reported life course experiences with their bladder. The intersection of race and gender was the lens through which participants viewed bladder health. Participants' accounts of their perspectives on bladder health explicitly and implicitly revealed structural racism as an explanatory overarching theme. Participants described (a) historically-rooted and still pervasive practices of discrimination and segregation, engendering inequitable access to quality medical care and public facilities, (b) institutional barriers to toileting autonomy in educational and occupational settings, promoting unhealthy voiding habits, (c) internalized expectations of Black women's stereotyped role as family caregiver, compromising caregiver health, (d) lack of reliable information on bladder health, leading to unhealthy bladder behaviors, and (e) potentially stress-related comorbid chronic conditions and associated medication use, causing or exacerbating bladder problems. CONCLUSIONS: Bladder health promotion interventions should address social-ecological and life course factors shaping Black women's bladder health, including social and structural barriers to accessing equitable health information and medical care.

The brain, gut, and bladder health nexus: A conceptual model linking stress and mental health disorders to overactive bladder in women.

OBJECTIVE: A small, but growing literature links stressors and mental health disorders (MHDs) across the life course to overactive bladder (OAB) and urinary incontinence symptoms. Mechanisms by which stressors and MHDs may impact bladder health are not fully understood, limiting novel prevention and treatment efforts. Moreover, potential biopsychosocial mechanisms involving the brain and gut have not been considered in an integrated, comprehensive fashion. METHODS: Members of the prevention of lower urinary tract symptoms Research Consortium developed conceptual models to inform research on biopsychosocial mechanisms through which stress and MDHs may impact bladder health among girls and women, focusing on brain and gut physiology. RESULTS: Two conceptual models were developed-one to explain central (brain-based) and peripheral (gut-based) mechanisms linking stressors and MHDs to OAB and bladder health, and one to highlight bidirectional communication between the brain, gut, and bladder. Traumatic events, chronic stressors, and MHDs may lead to a maladaptive stress response, including dysregulated communication and signaling between the brain, gut, and bladder. Gut bacteria produce molecules and metabolites that alter production of neurotransmitters, amino acids, short-chain fatty acids, and inflammatory immune response molecules that mediate communication between the gut and brain. Microbiota signal neurogenesis, microglia maturation, and synaptic pruning; they also calibrate brain-gut-bladder axis communication through neurotransmission and synaptogenesis, potentially influencing bladder symptom development. Life course trajectories of risk may be prevented or interrupted by central and peripheral resources for neuropsychological resilience. CONCLUSIONS: Depicted pathways, including brain-gut-bladder communication, have implications for research and development of novel prevention and treatment approaches.

A longitudinal study of social, religious, and spiritual capital and physical and emotional functioning in a national sample of African-Americans.

The present study builds on prior research by examining the moderating relationships between different types of capital on physical functioning, emotional functioning, and depressive symptoms using a 2.5-year longitudinal design with a national sample of African-American adults. Results indicated a significant T1 social capital × T1 religious capital interaction such that among low T1 religious capital participants, those with high T1 social capital had lower T2 physical functioning than those with lower T1 social capital. There was also a marginally significant T1 social capital × T1 spiritual capital interaction suggesting that among low T1 spiritual capital participants, those with higher T1 social capital reported a decline in depressive symptoms compared to those with lower T1 social capital. Future research and implications for intervention and policy development are discussed.

Disability and Health in African Americans: Population Research and Implications for Occupational Therapy Community-Based Practice.

Background: Population-based research and community-based interventions are integral to occupational therapy's scope of practice, yet they are underdeveloped in actual implementation. Therefore, this paper focuses on some health challenges facing the African American population, guided by the Person-Environment-Occupation-Performance Model. Method: Using data from an observational cross-sectional nationwide telephone survey of African American adults, we examined differences between African Americans who are receiving disability payments (RDP) and those who are employed full time (FTE) on several physical health behaviors and psychosocial health indicators. We further compared the differences between African Americans RDP versus those FTE on those physical health behaviors and psychosocial health indicators across five US regions. Results: Findings suggest that African Americans RDP are engaging in fewer positive physical health behaviors and experiencing worse psychosocial health compared to their counterparts FTE. There are also nuanced regional variations in the differences between African Americans RDP and FTE in physical health behaviors and psychosocial health indicators. Conclusion: This research highlighted some health challenges of African Americans RDP and FTE using a regional lens, demonstrating the value of OT population-based research. There is a need for OT population-specific community-based practice to address the health disparities of underserved and minority populations, such as African Americans.

Comparison of Two Methods for Implementing Comfort Care Order Sets in the Inpatient Setting: a Cluster Randomized Trial.

BACKGROUND: There is an ongoing need for interventions to improve quality of end-of-life care for patients in inpatient settings. OBJECTIVE: To compare two methods for implementing a Comfort Care Education Intervention for Palliative Care Consultation Teams (PCCT) in Veterans Affairs Medical Centers (VAMCs). DESIGN: Cluster randomized implementation trial conducted March 2015-April 2019. PCCTs were assigned to a traditional implementation approach using a teleconference or to an in-person, train-the-champion workshop to prepare PCCTs to be clinical champions at their home sites. PARTICIPANTS: One hundred thirty-two providers from PCCTs at 47 VAMCs. INTERVENTIONS: Both training modalities involved review of educational materials, instruction on using an electronic Comfort Care Order Set, and coaching to deliver the intervention to other providers. MAIN MEASUREMENTS: Several processes of care were identified a priori as quality endpoints for end-of-life care (last 7 days) and abstracted from medical records of veterans who died within 9 months before or after implementation (n = 6,491). The primary endpoint was the presence of an active order for opioid medication at time of death. Secondary endpoints were orders/administration of antipsychotics, benzodiazepines, and scopolamine, do-not-resuscitate orders, advance directives, locations of death, palliative care consultations, nasogastric tubes, intravenous lines, physical restraints, pastoral care visits, and family presence at/near time of death. Generalized estimating equations were conducted adjusting for potential covariates. KEY RESULTS: Eighty-eight providers from 23 VAMCs received teleconference training; 44 providers from 23 VAMCs received in-person workshop training. Analyses found no significant differences between intervention groups in any process-of-care endpoints (primary endpoint AOR (CI) = 1.18 (0.74, 1.89). Furthermore, pre-post changes were not significant for any endpoints (primary endpoint AOR (CI) = 1.16 (0.92, 1.46). Analyses may have been limited by high baseline values on key endpoints with little room for improvement. CONCLUSION: Findings suggest the clinical effectiveness of palliative care educational intervention was not dependent on which of the two implementation methods was used. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02383173.

"It's important to me": A qualitative analysis on shared decision-making and patient preferences in older adults with early-stage breast cancer.

OBJECTIVE: Shared decision-making (SDM) occurs when physicians and patients jointly select treatment that aligns with patient care goals. Incorporating patient preferences into the decision-making process is integral to successful decision-making. This study explores factors influencing treatment selection in older patients with early-stage breast cancer (EBC). METHODS: This qualitative study included women age ≥65 years with EBC. To understand role preferences, patients completed the Control Preferences Scale. Semi-structured interviews were conducted to explore patients' treatment selection rationale. Interview transcripts were analyzed using a constant comparative method identifying major themes related to treatment selection. RESULTS: Of 33 patients, the majority (48%) desired shared responsibility in treatment decision-making. Interviews revealed that EBC treatment incorporated three domains: Intrinsic and extrinsic influences, clinical characteristics, and patient values. Patients considered 19 treatment selection themes, the most prioritized including physician trust and physical side effects. CONCLUSIONS: Because preferences and approach to treatment selection varied widely in this sample of older, EBC patients, more research is needed to determine best practices for preference incorporation to optimize SDM at the time of treatment decisions.

Should we be talking about guidelines with patients? A qualitative analysis in metastatic breast cancer.

BACKGROUND: Little data exist on perceptions of guideline-based care in oncology. This qualitative analysis describes patients' and oncologists' views on the value of guideline-based care as well as discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. PATIENTS AND METHODS: In-person interviews completed with MBC patients and community oncologists and focus groups with academic oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. Most patients were unfamiliar with the term "guidelines." All patients desired to know if they were receiving guideline-discordant treatment but were often willing to accept this treatment. Five themes emerged explaining this including trusting the oncologist, relying on the oncologist's experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions regarding the importance of guidelines revealed three themes: consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified three major limitations in using guidelines: lack of consensus, inability to "think outside the box" to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, it was often not considered a priority. CONCLUSIONS: Patients expressed a desire to know whether they were receiving guideline-based care but were amenable to guideline-discordant treatment if the rationale was made clear. Providers' preference to limit discussions of guidelines is discordant with patients' desire for this information and may limit shared decision-making.

Applying concepts of life course theory and life course epidemiology to the study of bladder health and lower urinary tract symptoms among girls and women.

AIMS: Although lower urinary tract symptoms (LUTS) may occur at different periods during the life course of women, a little research on LUTS has adopted a life course perspective. The purpose of this conceptual paper is to demonstrate how life course theory and life course epidemiology can be applied to study bladder health and LUTS trajectories. We highlight conceptual work from the Prevention of Lower Urinary Tract Symptoms Research Consortium to enhance the understanding of life course concepts. METHODS: Consortium members worked in transdisciplinary teams to generate examples of how life course concepts may be applied to research on bladder health and LUTS in eight prioritized areas: (a) biopsychosocial ecology of stress and brain health; (b) toileting environment, access, habits, and techniques; (c) pregnancy and childbirth; (d) physical health and medical conditions; (e) musculoskeletal health; (f) lifestyle behaviors; (g) infections and microbiome; and (h) hormonal status across the life span. RESULTS: Life course concepts guided consortium members' conceptualization of how potential risk and protective factors may influence women's health. For example, intrapartum interventions across multiple pregnancies may influence trajectories of bladder health and LUTS, illustrating the principle of life span development. Consortium members also identified and summarized methodologic and practical considerations in designing life course research. CONCLUSIONS: This paper may assist researchers from a variety of disciplines to design and implement research identifying key risk and protective factors for LUTS and bladder health across the life course of women. Results from life course research may inform health promotion programs, policies, and practices.

"I'd Want to Know, Because a Year's Not a Long Time to Prepare for a Death": Role of Prognostic Information in Shared Decision Making among Women with Metastatic Breast Cancer.

Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes. Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.

A longitudinal examination of social support as a mediator of the personality-health relationship in a national sample of African Americans.

The present study investigates whether social support mediates the relationship between personality traits and health among African Americans over a five-year period, filling a gap in the literature on longitudinal tests of the personality-health association. Data were collected from a national probability sample of African American adults (N = 200). Personality was assessed at Time 1 (T1), social support was assessed 2.5 years later (T2), and physical functioning was examined 5 years (T3) after T1. Telephone surveys included measures of the Five Factor Model personality traits (T1), social support (T2), and physical functioning (T3). Results suggested that relationships between the T1 personality traits and T3 physical functioning were not mediated by T2 social support. Secondary analyses found that among all T1 personality traits, higher openness and lower neuroticism uniquely predicted higher T2 social support. Further, among T1 personality traits, higher conscientiousness uniquely predicted better T3 physical functioning. This information may be useful to healthcare providers and community members in developing prevention and intervention strategies for African Americans.

Trust but Verify: Exploring the Role of Treatment-Related Information and Patient-Physician Trust in Shared Decision Making Among Patients with Metastatic Breast Cancer.

An ideal model for decision making in cancer is shared decision-making (SDM). Primary facilitators in this model are information-seeking about treatment options and patient-physician trust. Previous studies have investigated the role of each of these parameters individually. However, little is known about their convergent role in treatment decision-making. Therefore, we explored perspectives of metastatic breast cancer (MBC) patients and healthcare professionals about the influence of health information-seeking and physician trust in the SDM process. Qualitative interviews with 20 MBC patients and 6 community oncologists, as well as 3 separate focus groups involving lay navigators, nurses, and academic oncologists, were conducted, recorded, and transcribed. Qualitative data analysis employed a content analysis approach, which included a constant comparative method to generate themes from the transcribed textual data. Five emergent themes were identified (1) physicians considered themselves as the patients' primary source of treatment information; (2) patients trusted their physician's treatment recommendations; (3) patients varied in their approach to seeking further health information regarding the discussed treatment options (e.g., internet websites, family and friends, support groups); (4) other healthcare professionals were cognizant of their fundamental role in facilitating further information-seeking; and (5) patient and physician discordant perspectives on shared decision making were present. Patient procurement of treatment information and the capacity to use it effectively in conjunction with patient trust in physicians play an important role in the shared decision-making process.

U.S. Adolescent and Adult Women's Experiences Accessing and Using Toilets in Schools, Workplaces, and Public Spaces: A Multi-Site Focus Group Study to Inform Future Research in Bladder Health.

The World Health Organization recognizes access to clean and safe toilets as crucial for public health. This study explored U.S. adolescent and adult cisgender women's lived experiences accessing toilets in schools, workplaces, and public spaces. As part of the Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium, we conducted 44 focus groups with female participants (n = 360; ages 11-93). Focus groups were stratified by age (11-14, 15-17, 18-25, 26-44, 45-64, 65+) and conducted across 7 geographically diverse U.S. sites from July 2017-April 2018. Using a transdisciplinary approach, we conducted conventional qualitative coding informed by our PLUS conceptual framework and used content analysis processes to identify salient themes. Across settings, toilet access was restricted by "gatekeepers" (i.e., individuals who control access to toilets). In contrast, self-restricting toilet use (deciding not to use the toilet despite biologic need to urinate) was based on internalized norms to prioritize school and job responsibilities over urination. In public spaces, self-restricting use was largely in response to lack of cleanliness. Across the life course, participants perceived gender disparities in the ability to easily access public toilets. Further research is needed to determine if and how these factors impact bladder health across the life course.

What Is Important When Making Treatment Decisions in Metastatic Breast Cancer? A Qualitative Analysis of Decision-Making in Patients and Oncologists.

BACKGROUND: Metastatic breast cancer (MBC) is an ideal environment for shared decision-making because of the large number of guideline-based treatment options with similar efficacy but different toxicity profiles. This qualitative analysis describes patient and provider factors that influence decision-making in treatment of MBC. MATERIALS AND METHODS: Patients and community oncologists completed in-person interviews. Academic medical oncologists participated in focus groups. Interviews and focus groups were audio-recorded, transcribed, and analyzed using NVivo. Using an a priori model based on the Ottawa Framework, two independent coders analyzed transcripts using a constant comparative method. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 patients with MBC, 6 community oncologists, and 5 academic oncologists. Analysis of patient interviews revealed a decision-making process characterized by the following themes: decision-making style, contextual factors, and preferences. Patient preference subthemes include treatment efficacy, physical side effects of treatment, emotional side effects of treatment, cognitive side effects of treatment, cost and financial toxicity, salience of cutting-edge treatment options (clinical trial or newly approved medication), treatment logistics and convenience, personal and family responsibilities, treatment impact on daily activities, participation in self-defining endeavors, attending important events, and pursuing important goals. Physician decisions emphasized drug-specific characteristics (treatment efficacy, side effects, cost) rather than patient preferences, which might impact treatment choice. CONCLUSION: Although both patients with MBC and oncologists considered treatment characteristics when making decisions, patients' considerations were broader than oncologists', incorporating contextual factors such as the innovative value of the treatment and life responsibilities. Differences in perspectives between patients and oncologists suggests the value of tools to facilitate systematic communication of preferences in the setting of MBC. IMPLICATIONS FOR PRACTICE: Both patients with metastatic breast cancer (MBC) and oncologists emphasized importance of efficacy and physical side effects when making treatment decisions. However, other patient considerations for making treatment decisions were broader, incorporating contextual factors such as the logistics of treatments, personal and family responsibilities, and ability to attend important events. Furthermore, individual patients varied substantially in priorities that they want considered in treatment decisions. Differences in perspectives between patients and oncologists suggest the value of tools to facilitate systematic elicitation of preferences and communication of those preferences to oncologists for integration into decision-making in MBC.

Racial Differences in Processes of Care at End of Life in VA Medical Centers: Planned Secondary Analysis of Data from the BEACON Trial.

BACKGROUND: Racial differences exist for a number of health conditions, services, and outcomes, including end-of-life (EOL) care. OBJECTIVE: The aim of the study was to examine differences in processes of care in the last 7 days of life between African American and white inpatients. METHODS: Secondary analysis was conducted of data collected in the Best Practices for End-of-Life Care for Our Nation's Veterans (BEACON) trial (conducted 2005-2011). Subjects were 4891 inpatient decedents in six Veterans Administration Medical Centers. Data were abstracted from decedents' medical records. Multi-variable analyses were conducted to examine the relationship between race and each of 18 EOL processes of care controlling for patient characteristics, study site, year of death, and whether the observation was pre- or post-intervention. RESULTS: The sample consisted of 1690 African American patients (34.6%) and 3201 white patients (65.4%). African Americans were less likely to have: do not resuscitate (DNR) orders (odds ratio [OR]: 0.67; p = 0.004), advance directives (OR: 0.71; p = 0.023), active opioid orders (OR: 0.64, p = 0.0008), opioid medications administered (OR: 0.61, p = 0.004), benzodiazepine orders (OR: 0.68, p < 0.0001), benzodiazepines administered (OR: 0.61, p < 0.0001), antipsychotics administered (OR: 0.73, p = 0.004), and steroids administered (OR: 0.76, p = 0.020). Racial differences were not found for other processes of care, including palliative care consultation, pastoral care, antipsychotic and steroid orders, and location of death. CONCLUSIONS: Racial differences exist in some but not all aspects of EOL care. Further study is needed to understand the extent to which racial differences reflect different patient needs and preferences and whether interventions are needed to reduce disparities in patient/family education or access to quality EOL care.

Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians.

BACKGROUND: End-of-life discussions in critically-ill patients with acute surgical conditions may be rushed and occur earlier during hospitalization. This study explores the concept of sudden advanced illness (SAI) and its relevance to patients requiring Palliative and Surgical Critical Care. METHODS: Semi-structured interviews were completed with 16 physicians, querying each about (1) definitional components, (2) illustrative cases, and (3) comfort with SAI. Analysis was done by grounded theory. RESULTS: SAI was characterized as unforeseen, emerging abruptly and producing devastating injury, often in healthy, younger patients. There is (1) prognostic uncertainty, (2) loss of capacity, and (3) unprepared surrogate decision-making. Cases are emotionally-charged and often personal. CONCLUSION: The emerging concept of SAI is important for understanding how Palliative Care can enhance care for this subset of patients.

"He's on his dying bed": Next-of-kin's experiences of the dying body.

For family members of dying patients who have grown accustomed to providing daily body care, the transition from home to hospital is stressful. The authors used the experiences surrounding death for 78 U.S. veterans who died in a Veterans Affairs hospital. The research is based on interviews conducted with the decedent's next-of-kin. Secondary qualitative analysis of previously-coded transcribed interviews was used. Themes of social disorganization and a loss of control over the body emerged. Next-of-kin experienced the physical and functional breakdown of their loved one's body. Understanding the nature of the loss of control may help alleviate the loss of control may help alleviate the strain on families.

Qualitative assessment of self-identity in people with advanced dementia.

This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer's disease. A semi-structured interview was developed to explore the narrative self among residents with dementia in a residential care facility, and residents without dementia in an independent living setting. The interviews were transcribed verbatim from audio recordings and analyzed for common themes, while being sensitive to possible differences between the groups. The participants with dementia showed evidence of self-reference even though losses in explicit memory were evident. The most noticeable difference between the two groups was time frame reference. Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of "self."

Predictors of Physical Restraint Use in Hospitalized Veterans at End of Life: An Analysis of Data from the BEACON Trial.

BACKGROUND: The use of physical restraints in dying patients may be a source of suffering and loss of dignity. Little is known about the prevalence or predictors for restraint use at end of life in the hospital setting. OBJECTIVE: The objective was to determine the prevalence and predictors of physical restraint use at the time of death in hospitalized adults. METHODS: Secondary analysis was performed on data from the "Best Practices for End-of-Life Care for Our Nation's Veterans" (BEACON) trial conducted between 2005 and 2011. Medical record data were abstracted from six Veterans Administration Medical Centers (VAMCs). Data on processes of care in the last seven days of life were abstracted from the medical records of 5476 who died in the six VAMCs. We prospectively identified potential risk factors for restraint use at the time of death from among the variables measured in the parent trial, including location of death, medications administered, nasogastric tube, intravenous (IV) fluids, family presence, and receipt of a palliative care consultation. RESULTS: Physical restraint use at time of death was documented in 890 decedents (16.3%). Restraint use varied by location of death, with patients in intensive settings being at higher risk. Restraint use was significantly more likely in patients with a nasogastric tube and those receiving IV fluids, benzodiazepines, or antipsychotics. CONCLUSIONS: This is the first study to document that one in six hospitalized veterans were restrained at the time of death and to identify predictors of restraint use. Further research is needed to identify intervention opportunities.

Team-based volunteerism with the seriously ill: a qualitative analysis from 10 volunteers' perspectives.

Volunteers offer means through which social workers may extend their ability to support individuals with serious illnesses near the end of life. This study explored the experience of volunteers on teams organized initially as a grassroots movement in response to stigmatized and often socially isolated people with HIV/AIDS dying in the community. Volunteer care teams later expanded to individuals with other serious illnesses. This model spread as a means of meeting the growing need for practical support for seriously ill homebound individuals. Yet, little has been reported in the scientific literature about the interworkings of these teams and their optimal level of functioning. Qualitative inquiry, in the form of semi-structured interviews, explored perspectives of 10 volunteers with experience in volunteer team caring and identified the social processes that shaped their work. The volunteers discussed balance between positive life meaning gained from volunteer work, lessons learned, and negative aspects of a volunteer team approach to caring for the seriously ill in the community. Further investigation is warranted to validate the volunteer care team approach as a cost-effective tool to help seriously ill individuals and caregivers.

Impact of a hospice emergency kit for veterans and their caregivers: a prospective cohort study.

BACKGROUND: Although hospice emergency kits (HEKs) are provided by many home hospice agencies, little is known about their use, side effects, and perceived impact. OBJECTIVE: To evaluate HEK medication utilization, side effects, and impact as perceived by home hospice patients and their caregivers. METHODS: We conducted a prospective longitudinal cohort study. Participants included 43 veterans and their family/caregivers referred to community home hospices with a Veterans Affairs (VA)-provided HEK. Measurements included patient/family reports based on weekly telephone interviews, electronic medical record (EMR) review, and after-death caregiver interviews. RESULTS: The HEK was used by 27 of 43 patients/caregivers (62.8%). In 11 cases, they reported using the kit on more than one occasion. The most commonly used medications were morphine concentrate (30.2% of patients), lorazepam (20.9%), and levofloxacin (16.3%). In 15 cases (34.9%), the family thought the HEK may have helped the patient stay at home. Nineteen of the 43 patients made at least one visit to the emergency department (ED) and 22 were hospitalized. Most admissions through the ED were due to uncontrolled pain and/or gastrointestinal problems, such as nausea or bowel obstruction. In after-death interviews, opinions of the HEK were uniformly positive. Respondents described the HEK's usefulness and felt supported and empowered by its presence in the home. Minor side effects were reported in four cases. CONCLUSIONS: Findings provide promising evidence that HEKs are a feasible and well-tolerated method for achieving timely relief of emergent symptoms in home hospice patients and possibly avoiding unwanted ED visits and hospitalizations.