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Research on the overall effectiveness of single-sex education remains inconclusive; however, some research does indicate that benefits other than academic achievement may be possible with a single-sex format. Advocates argue that when single-sex environments are structured by not only separating boys and girls but also by leveraging gender-specific learning strategies, positive outcomes are more likely. This may be of particular significance for middle-school girls, who often struggle with social anxieties related to adolescence that create barriers in transitioning to and navigating the middle school environment. As issues for middle-school girls are often unique to their gender, single-sex education emerges as a possible remedy to these problems. This study used qualitative data collected over a three-year period at a single-school site. Participant responses consistently showed that 6th grade girls placed in a single-sex classroom found the setting to be more supportive than a traditional mixed-sex classroom. Emerging themes included perceived improvement of academic performance and increased focus and engagement. Overall results indicated that for middle school females, participation in single-sex programs can help in easing social anxieties girls may experience while in middle school.

Background: Active social and spiritual support for persons with cancer and other serious illnesses has been shown to improve psychological adjustment to illness and quality of life. Objective: To evaluate a community-based support team intervention within the African American community using stakeholder interviews. Methods: Support team members were recruited from African American churches, community organizations, and the social network of individuals with serious illness. Support teams provided practical, emotional, and spiritual care for persons with cancer and other serious illness. The intervention was evaluated using semistructured interviews with 47 stakeholders including those with serious illness, support team volunteers, clergy, and medical providers. Results: Stakeholders report multiple benefits to participation in the support team; themes included "provision of emotional and spiritual support," "extension of support to patients' family," and "support complementary to medical care." Reported barriers to participation were grouped thematically as "desiring to maintain a sense of independence" and "normalcy"; "limitations of volunteers" were also discussed as a barrier to this model of supportive care. Conclusions: This qualitative evaluation provides initial evidence that a support team intervention helped meet the emotional and spiritual needs of African American persons with cancer or other serious illness. Volunteer support teams merit further study as a way to improve quality of life for persons facing serious illness.

Background: Community-based peer support may help meet the practical, emotional, and spiritual needs of African Americans with advanced cancer. Support teams are a unique model of peer support for persons facing serious illness, but research is rare. This study sought to (a) implement new volunteer support teams for African Americans with advanced cancer in two distinct regions and (b) evaluate support teams' ability to improve support, awareness of services, and quality of life for these patients. Methods: The study used a pre-post design. Community and academic partners collaborated to implement volunteer support teams and evaluate the intervention using pre-post surveys of volunteers and patients. Patients who declined support teams were also interviewed as a comparison group. Results: Investigators enrolled and trained 130 volunteers who formed 25 support teams in two geographic regions. Volunteers supported 25 African American patients with advanced cancer (72%) or other diseases. After 2 months, patients with support teams reported fewer needs for practical, emotional, and spiritual support on a structured checklist. They more often communicated with someone about their cancer care needs (48% vs. 75%, p = 0.04), and were more aware of Hospice (4% vs. 25%, p = 0.04), but quality of life scores were unchanged. Comparison patients who refused a support team had fewer support needs at baseline and follow-up, suggesting that refusals were based on a lack of need. Conclusion: Coordinated volunteer support teams are a promising new model to provide peer support for African Americans facing cancer and other serious illnesses. Further testing in a pragmatic clinical trial is warranted.

Peer support interventions extend care and health information to underserved populations yet rarely address serious illness. Investigators from a well-defined academic-community partnership developed and evaluated a peer support intervention for African Americans facing advanced cancer. Evaluation methods used the Reach, Efficacy, Adoption, Implementation, Maintenance (RE-AIM) framework. Investigators initially recruited and trained 24 lay health advisors who shared information or support with 210 individuals. However, lay advisors reported barriers of medical privacy and lack of confidence working alone with people with cancer. Training was modified to match the support team model for peer support; training reached 193 volunteers, 104 of whom formed support teams for 47 persons with serious illness. Support teams were adopted by 23 community organizations, including 11 African American churches. Volunteers in teams felt prepared to implement many aspects of supportive care such as practical support (32%) or help with cancer or palliative care resources (43%). People with serious illness requested help with practical, emotional, spiritual, and quality of life needs; however, they rarely wanted advocacy (3%) or cancer or palliative care resources (5%) from support teams. Volunteers had difficulty limiting outreach to people with advanced cancer due to medical privacy concerns and awareness that others could benefit. Support teams are a promising model of peer support for African Americans facing advanced cancer and serious illness, with reach, adoption, and implementation superior to the lay advisor model. This formative initial evaluation provides evidence for feasibility and acceptance. Further research should examine the efficacy and potential for maintenance of this intervention.

Background: Primary care clinicians care for most persons with Alzheimer's disease and related dementias (ADRDs), yet lack dementia-specific skills in advance care planning (ACP). Objectives: To develop and evaluate a training toolkit for primary care clinicians to improve ACP communication for people with ADRD and their families. Design: Clinical practice outcomes assessment and pre–post-training evaluation. Intervention training toolkit addressed ACP skills by dementia stage: (1) advance directives in early dementia, (2) decision-making capacity in moderate dementia, (3) Physician Orders for Life-Sustaining Treatment (POLST) in late-stage dementia, and (4) hospice and hospitalization in advanced dementia. Setting/Subjects: Nonhospitalized clinical care sites, 51 clinicians in North Carolina, USA. Measurements: Data collection utilized structured chart abstractions and pre- and post-training surveys. Results: Of 51 participants trained, 33 had encounters with patients with ADRD in study period. Most participants were women (n = 42), white (n = 37), and physicians (n = 31). Participants increased documentation of surrogates (22.7% vs. 35.5%, p = 0.03), decision-making capacity (13.5% vs.23.2%, p = 0.04), and POLST completion (9.2% vs. 18.8%, p = 0.03). Training increased ACP documentation (6.4% vs. 14.5%, p = 0.031) and goals of care (GOC) decision-making discussions (17.0% vs. 31.9%, p = 0.005). In pre–post-comparisons, participant confidence increased in determining capacity, exploring dementia prognosis, GOC, eliciting surrogates, and leading family meetings (all p < 0.001). Most participants strongly agreed that the training addressed skills used in practice (n = 34), contained clear language (n = 40), took an appropriate amount of time (n = 32), and was designed effectively (n = 35). Conclusion: This video-based training resource increased the use of dementia-specific ACP communication skills and clinician confidence. [ABSTRACT FROM AUTHOR]

In dynamic systems, organisms are faced with variable selective forces that may impose trade-offs. In estuaries, salinity is a strong driver of organismal diversity, while parasites shape species distributions and demography. We tested for trade-offs between low-salinity stress and parasitism in an invasive castrating parasite and its mud crab host along salinity gradients of two North Carolina rivers. We performed field surveys every six to eight weeks over 3 years to determine factors influencing parasite prevalence, host abundance, and associated taxa diversity. We also looked for signatures of low-salinity stress in the host by examining its response (time-to-right and gene expression) to salinity. We found salinity and temperature significantly affected parasite prevalence, with low-salinity sites (less than 10 practical salinity units (PSU)) lacking infection, and populations in moderate salinities at warmer temperatures reaching prevalence as high as 60%. Host abundance was negatively associated with parasite prevalence. Host gene expression was plastic to acclimation salinity, but several osmoregulatory and immune-related genes demonstrated source-dependent salinity response. We identified a genetic marker that was strongly associated with salinity against a backdrop of no neutral genetic structure, suggesting possible selection on standing variation. Our study illuminates how selective trade-offs in naturally dynamic systems may shape host evolutionary ecology. [ABSTRACT FROM AUTHOR]

Background: Although quality-of-care domains for home-based primary and palliative programs have been proposed, they have had limited testing in practice. Our aim was to evaluate the care provision in a community-based serious-illness care program, a combined home-based primary and palliative care model.Methods: Retrospective chart review of patients in an academic community-based serious-illness care program in central North Carolina from August 2014 to March 2016 (n = 159). Chart review included demographics, health status, and operationalized measures of seven quality-of-care domains: medical assessment, care coordination, safety, quality of life, provider competency, goal attainment, and access.Results: Patients were mostly women (56%) with an average age of 70 years. Patients were multi-morbid (53% ≥3 comorbidities), functionally impaired (45% had impairment in ≥2 activities of daily living) and 32% had dementia. During the study period, 31% of patients died. Chart review found high rates assessment of functional status (97%), falls (98%), and medication safety (96%). Rates of pain assessment (70%), advance directive discussions (65%), influenza vaccination (59%), and depression assessment (54% of those with a diagnosis of depression) were lower. Cognitive barriers, spiritual needs, and behavioral issues were assessed infrequently (35, 22, 21%, respectively).Conclusion: This study is one of the first to operationalize and examine quality-of-care measures for a community-based serious-illness care program, an emerging model for vulnerable adults. Our operationalization should not constitute validation of these measures and revealed areas for improvement; however, the community-based serious-illness care program performed well in several key quality-of-care domains. Future work is needed to validate these measures. [ABSTRACT FROM AUTHOR]

BACKGROUND/OBJECTIVES: In late‐stage dementia, families often prioritize quality of life (QoL) and comfort, yet little research examines factors impacting QoL. We sought to (1) describe temporal trends in QoL in late‐stage dementia, and (2) explore associations between patient characteristics, care interventions, and QoL. DESIGN: Secondary analysis of data from the Goals of Care clinical trial. SETTING: Twenty‐two nursing homes (NHs) in North Carolina. PARTICIPANTS: Family decision makers for residents with late‐stage dementia. MEASUREMENTS: Family‐reported QoL at baseline and at 9 months using the Alzheimer's Disease‐Related Quality of Life Instrument (ADRQL) with five subscales scored 0 to 100 (higher scores indicate better quality). Families reported demographics, primary goal of care, and described their perceptions of residents' QoL. Chart reviews provided data on hospital transfers, treatment plans, and hospice enrollment. We ran mixed effects models of hypothesized variables and change in ADRQL over time. RESULTS: The study sample was 241 dyads of residents with late‐stage dementia and family decision makers. Family‐reported ADRQL scores reflected moderately good QoL at baseline and at 9 months (69.1 vs 66.9; p =.106). Subscales for Awareness of Self (62.8; Global Deterioration Scale [GDS] = 5; 30.5; GDS = 7; p >.01) and Enjoyment of Activities (53.4; GDS = 5; 39.4; GDS = 7; p >.01) were lower in later stage disease. Qualitatively, family members associated better QoL for dementia with (1) activities, (2) opportunities to leave NH, (3) NH‐structured activities, (4) attentiveness in NH, and (5) passive interaction. ADRQL at 9 months was associated with later dementia stage and referral to hospice (p <.01). Age (p =.004) and hospice enrollment were significantly associated with a larger decrease in ADRQL over 9 months (p =.019). A primary goal of comfort was associated with a larger increase in ADRQL (p =.022). CONCLUSION: Families judge QoL to be moderately good in late‐stage dementia. They perceive activities, opportunities to leave the NH, and quality of interpersonal care as ways to improve dementia‐specific QoL. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Healthcare organizations are expanding community‐based serious illness care programs to deliver care for homebound patients. Programs typically focus on home‐based primary care or home‐based palliative care, yet this population may require both services. We developed and evaluated a primary and palliative care program serving seriously ill older adults, called the Reaching Out to Enhance the Health of Adults in Their Communities and Homes (REACH) program. Our objective was to determine the impact of the REACH program on healthcare utilization and the patient care experience. DESIGN: Case study using medical record review and telephone interviews. SETTING: Home‐based serious illness care program in central North Carolina. PARTICIPANTS: Patients enrolled in the REACH program from August 2014 to March 2016 (n = 159). INTERVENTION: Home‐based primary and palliative care delivered by an interdisciplinary team for seriously ill older adults. MEASUREMENTS: Structured medical record review including demographics, health and functional status, and acute hospitalization and emergency department (ED) visits in the 12 months preceding and following initiation of the REACH program. A convenience sample of participants completed telephone interviews that measured the quality‐of‐care experience and quality of communication. RESULTS: REACH patients had a 43% reduction in hospital visits and a 25% reduction in ED visits. Participants in telephone interviews reported a high‐quality care experience and very good quality of communication with REACH providers. CONCLUSION: A care model that integrates home‐based primary care and palliative care has the potential to reduce health service utilization and enhance the care experience for older patients with serious illness. J Am Geriatr Soc 67:825–830, 2019. [ABSTRACT FROM AUTHOR]

Background: Nursing home (NH) residents with dementia experience high rates of intensive treatment near the end of life. Limited research examines whether treatment is concordant with goals of care (GOC). Objectives: We analyzed data from the GOC trial to describe family decision makers' preferred GOC and perceptions of goal-concordant care for NH residents with late-stage dementia We compared subsequent treatment orders when families chose a primary goal of comfort versus other goals. Design: We performed a secondary analysis of data from baseline and 9-month family decision-maker interviews and chart reviews. Setting and Participants: A total of 302 dyads of NH residents and family decision makers in 22 North Carolina NHs were enrolled. Measurements: In baseline and follow-up interviews, families reported on their and NH staff's primary GOC, and perceived prognosis and goal-concordant care. Chart reviews provided data on treatment orders, hospital transfers, and hospice, which were compared after selection of a primary goal of comfort versus other goals. Results: Family chose comfort as the primary goal for 66% of residents at baseline, and for nearly 80% by 9 months or death. At baseline, 49% perceived concordance with NH staff on the primary goal, and 69% at follow-up. In multivariate models, choice of comfort as the primary goal, versus other goals, was associated with half as many hospital transfers (0.11 vs. 0.25/90 person-days, confidence interval [−0.2 to −0.01]), but not with hospice or treatment orders. Conclusions: Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov : NCT01565642 (3/26/12). [ABSTRACT FROM AUTHOR]

Background: The implementation science literature has contributed important insights regarding the influence of formal policies and practices on health care innovation implementation, whereas informal implementation policies and practices have garnered little attention. The broader literature suggests that informal implementation policies and practices could also influence innovation use. Purpose: We used the Organizational Theory of Innovation Implementation to further understand the role of formal and informal implementation policies and practices as determinants of implementation effectiveness. We examined their role within the context of initiatives to increase palliative care consultation in inpatient oncology. Methods: We used a case study design in two organizational settings within one academic medical center: medical and gynecologic oncology. We completed semistructured interviews with medical (n = 12) and gynecologic (n = 10) oncology clinicians using questions based on organizational theory. Quantitative data assessed implementation effectiveness, defined as aggregated palliative care consult rates within oncology services from 2010 to 2016. Four palliative care clinicians were interviewed to gain additional implementation context insights. Results: Medical oncology employed multiple formal policies and practices including training and clinician prompting to support palliative care consultation and a top-down approach, yet most clinicianswere unaware of the policies and practices, contributing to a weak implementation climate. In contrast, gynecologic oncology employed one formal policy (written guideline of criteria for initiating a consult) but also relied on informal policies and practices, such as spontaneous feedback and communication; they adopted a bottom-up approach, contributing to broader clinician awareness and strong implementation climate. Both services exhibited variable, increasing consult rates over time. Practice Implications: Informal policies and practices may compensate or substitute for formal policies and practices under certain conditions (e.g., smaller health care organizations). Further research is needed to investigate the role of formal and informal policies and practices in shaping a strong and sustainable implementation climate and subsequent effective innovation implementation. [ABSTRACT FROM AUTHOR]

Background: Although strong evidence supports early palliative care (PC) and consistent advance care planning (ACP) for patients with poor-prognosis Stage IV solid tumors, best practice standards have not been established for hematologic malignancies. Our primary objective was to describe current access to specialty PC consultation and ACP for inpatients with high-risk leukemia. Secondary objectives were to describe components of ACP and PC practices. Methods: We enrolled all patients with high-risk leukemia (acute leukemia ≥65 years or relapsed leukemia >18 years) admitted to the University of North Carolina Cancer Hospital from October 1, 2015, to August 1, 2016. Structured chart reviews provided data on demographics, disease characteristics, PC consultation, frequency and components of documented ACP, and quality measures for PC practices. Results: Of 50 high-risk leukemia patients, 52% were 65 years of age or older with a new diagnosis of acute leukemia and 48% were under the age of 65 with relapsed leukemia. Most patients (64%) reported pain on admission. Twenty-two percent of patients died within 3 months of hospitalization. Sixteen percent of patients received PC consultation and 24% had complete ACP, with an identified surrogate decision-maker documented treatment preferences. Conclusions: In this descriptive study of inpatients with high-risk leukemia, we found that despite a poor prognosis and high symptom burden, the frequency of PC consultation and ACP documentation was low. Findings suggest missed opportunities to provide PC to a high-risk subset of hematologic malignancies, and may help to target future interventions. [ABSTRACT FROM AUTHOR]

Background: Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences. Objective: We evaluated four additional types of consistency, using prospective data on written preferences and active clinical decision making by patients and their surrogates. Methods: Secondary analysis of data was done from a trial of an ACP intervention for patient-surrogate dyads. Forty-five patients died during the trial and comprised the sample for the analysis. Sources of data included patients' preferences in a written goals-of-care tool, medical record reviews, and two-week postbereavement interviews with surrogates to complement medical record reviews. Results: Twenty-four patients (53.3%) received care consistent with written preferences and 11 (24.4%) inconsistent with written preferences. The remaining 10 patients (22.2%) died suddenly with no opportunity for treatment decision making. Eleven (24.4%) were able to participate in decision making with their surrogates; of those, 9 (81.8%) received care consistent with their expressed preferences. Twenty-two patients were incapacitated and thus the surrogate made treatment decisions alone; of those, 18 (81.8%) made decisions consistent with the patient's written preference. Conclusions: Simply comparing documented preferences for end-of-life care and medical records of care delivered does not adequately reflect the process of ACP and treatment decision making at the end of life. To understand consistency between preferences and end-of-life care, investigators need data on written and realtime expressed preferences. [ABSTRACT FROM AUTHOR]

Background: African Americans' beliefs about end-of-life care may differ from those of whites, but racial differences in advance care planning (ACP) outcomes are unknown. Objective: The aim of this study was to compare the efficacy of an ACP intervention on preparation for end-of-life decision making and post-bereavement outcomes for African Americans and whites on dialysis. Method: A secondary analysis of data from a randomized trial comparing an ACP intervention (Sharing Patient's Illness Representations to Increase Trust [SPIRIT]) with usual care was conducted. There were 420 participants, 210 patient-surrogate dyads (67.4% African Americans), recruited from 20 dialysis centers in North Carolina. The outcomes of preparation for end-of-life decision making included dyad congruence on goals of care, surrogate decision-making confidence, a composite of the two, and patient decisional conflict assessed at 2, 6, and 12 months post-intervention. Surrogate bereavement outcomes included anxiety, depression, and post-traumatic distress symptoms assessed at 2 weeks, and at 3 and 6 months after the patient's death. Results: SPIRIT was superior to usual care in improving dyad congruence (odds ration [OR] = 2.31, p = 0.018), surrogate decision-making confidence (β = 0.18, p = 0.021), and the composite (OR = 2.19, p = 0.028) 2 months post-intervention, but only for African Americans. SPIRIT reduced patient decisional conflict at 6 months for whites and at 12 months for African Americans. Finally, SPIRIT was superior to usual care in reducing surrogates' bereavement depressive symptoms for African Americans but not for whites (β = −3.49, p = 0.003). Conclusion: SPIRIT was effective in improving preparation for end-of-life decision-making and post-bereavement outcomes in African Americans. [ABSTRACT FROM AUTHOR]

Objectives To describe quality of care for feeding problems in advanced dementia and probability and predictors of weight loss and mortality. Design Prospective cohort. Setting Twenty-four nursing homes ( NHs). Participants Nursing home residents with advanced dementia and feeding problems and family surrogates (N = 256). Measurements Family reported on quality of feeding care at enrollment and 3 months. Chart reviews at enrollment and 3, 6, and 9 months provided data on feeding problems, treatments, weight loss of more than 5% in 30 days or more than 10% in 6 months, and mortality. Organizational variables were obtained from administrator surveys and publically reported data. Results Residents with advanced dementia and feeding problems had an average age of 85; 80% had chewing and swallowing problems, 11% weight loss, and 48% poor intake. Family reported feeding assistance of moderate quality; 23% felt the resident received less assistance than needed. Mortality risk was significant; 8% died within 3 months, 17% within 6 months, and 27% within 9 months. Residents with advanced dementia who had stable weight over 3 months had a 5.4% rate of significant weight loss and a 2.1% risk of death over the next 3 months. Residents with advanced dementia and weight loss over 3 months had a 38.9% chance of stabilizing weight over the next 3 months but also had a 19.2% chance of dying. Weight loss was the only independent predictor of death. Conclusion Weight loss is a predictor of death in advanced dementia. Treatments can often stabilize weight, but weight loss should be used to trigger discussion of goals of care and treatment options. [ABSTRACT FROM AUTHOR]

Background: Hospice and palliative care (PC) remain underutilized by Medicaid patients. Objective: Our aim was to evaluate an intervention to improve communication about advance care planning (ACP) and symptom distress, and to facilitate referral to PC and hospice. Methods: We conducted a study in a statewide Medicaid primary care network with 510 Medicaid care managers (CMs). PC experts collaborated with leaders in the statewide primary care network on a quality improvement intervention. Training components included education and engagement with local hospice and PC providers. Quality improvement components included feedback of quality measures and a practice toolkit. Evaluation used participant surveys and tracking of key quality measures: 1) percent of at-risk subset of aged, blind, and disabled (ABD) Medicaid patients asked about ACP or symptom distress; 2) cumulative number of ABD Medicaid PC or hospice referrals; and 3) the percent of all nondual ABD Medicaid decedents enrolled in hospice. Results: After training, CMs identified the following areas for expected practice change: ACP (29%), identifying/referring patients for hospice or PC (25%), supporting patients and families (21%), toolkit utilization (10%), and engaging medical providers (10%). Over one-year follow-up the percent of moderate and high-risk ABD Medicaid patients asked about ACP or symptoms increased from 7% to 31% and 8% to 41%, respectively ( p<0.001). The cumulative number of PC or hospice referrals increased from 8 to 155. Hospice enrollment at death was unchanged (29% to 30%, p=NS [nonsignificant]). Conclusions: A statewide intervention targeting CMs in a Medicaid primary care practice network is effective to increase communication and hospice and PC referrals; longer follow-up may be required to determine effect on hospice use. [ABSTRACT FROM AUTHOR]

Objective: Hospice and palliative care providers need ways to measure and improve care processes. We tested feasibility, usability, reliability, and validity of Prepare, Embrace, Attend, Communicate, Empower (PEACE) quality measures for palliative care. Methods: Trained research nurses abstracted data from medical records to generate quality measures for a random sample of 460 seriously ill patients without, and 102 patients with, specialty palliative care (SPC) services. Results: Patient age ranged from 16 to 99 years, 50% were women, and 24% were African American. Of 34 PEACE quality measures, 17 were feasible for hospital palliative care. Inter-rater reliability was high (κ>0.80) for all but two quality measures. Face validity was endorsed by clinical service leaders, and construct validity was established by higher scores for patients receiving SPC. Comprehensive palliative care assessment was completed for only 10% of seriously ill hospitalized patients, compared with 56% of patients with SPC ( p<0.001). Patients with moderate or severe pain were more likely to have a clinical assessment with SPC (67% versus 42%, p=0.002). Patients with SPC more often received attention for their emotional and spiritual needs (64% versus 40%, p<0.001) and documentation of preferences for life-sustaining treatments (91% versus 59%, p>0.001). Usability was endorsed by service leaders, who initiated two practice improvement projects. Conclusion: PEACE quality measures are feasible and reliable, and may be useful to examine and improve the quality of palliative care for seriously ill hospitalized patients as well as for patients in hospice. Research is needed to test measures for actionability and responsiveness to intervention. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to use innovation implementation theory to describe the factors and conditions which facilitate or hamper the enforcement of person-centered care in nursing homes. The study utilizes data which were gathered from the Person-Centered Care Program carried out by the Carolinas Center for Medical Excellence. It recommends that high-quality management communications can be linked with effective implementation of organization-wide change in nursing homes.

Objectives To test whether a decision aid improves quality of decision-making about feeding options in advanced dementia. Design Cluster randomized controlled trial. Setting Twenty-four nursing homes in North Carolina. Participants Residents with advanced dementia and feeding problems and their surrogates. Intervention Intervention surrogates received an audio or print decision aid on feeding options in advanced dementia. Controls received usual care. Measurements Primary outcome was the Decisional Conflict Scale (range: 1-5) measured at 3 months; other main outcomes were surrogate knowledge, frequency of communication with providers, and feeding treatment use. Results Two hundred fifty-six residents and surrogate decision-makers were recruited. Residents' average age was 85; 67% were Caucasian, and 79% were women. Surrogates' average age was 59; 67% were Caucasian, and 70% were residents' children. The intervention improved knowledge scores (16.8 vs 15.1, P < .001). After 3 months, intervention surrogates had lower Decisional Conflict Scale scores than controls (1.65 vs 1.90, P < .001) and more often discussed feeding options with a healthcare provider (46% vs 33%, P = .04). Residents in the intervention group were more likely to receive a dysphagia diet (89% vs 76%, P = .04) and showed a trend toward greater staff eating assistance (20% vs 10%, P = .08). Tube feeding was rare in both groups even after 9 months (1 intervention vs 3 control, P = .34). Conclusion A decision aid about feeding options in advanced dementia reduced decisional conflict for surrogates and increased their knowledge and communication about feeding options with providers. [ABSTRACT FROM AUTHOR]

Context: In 2008, the Centers for Medicare & Medicaid Services (CMS) required U.S. hospices to implement comprehensive quality improvement programs. CMS contracted with the Quality Improvement Organization in North and South Carolina to develop quality measures and instruments to assess hospice and palliative care quality. Objectives: To develop a set of quality measures, with complete specifications, and data collection tools for use by hospice and palliative care providers in quality improvement. Methods: Quality measures were identified from: published literature, the National Quality Forum, CMS measures, the National Quality Measures Clearinghouse, and measures submitted by two national hospice organizations. Available data on the quality measures were gathered and pilot data were collected for measures with no availble data. A Technical Expert Panel (TEP) rated quality measures on: importance, scientific soundness, feasibility and usability, using numeric scores for each dimension. Scores for quality measures were averaged across dimensions and across TEP members to identify measures for further development. Results: Of 174 measures identified, 88 were determined appropriate to the setting and were reviewed and rated by the TEP. Measures with overall scores ≥75th percentile ( n = 23), measures with high importance scores ( n = 7), measures for under-represented domains ( n = 2), and process measures antecedent to TEP identified measures ( n = 2), and were selected. Conclusions: Specifications and data collection tools are available for 34 PEACE quality measures that were highly rated by experts in hospice and palliative care. Future research should assess the scientific soundness and responsiveness of these measures to quality improvement. [ABSTRACT FROM AUTHOR]

Background: Hospice and palliative care organizations are expanding their use of standardized instruments and other approaches to measure quality. We undertook a systematic review and evaluation of published patient-level instruments for potential application in hospice and palliative care clinical quality measurement. Methods: We searched prior reviews and computerized reference databases from 1990 through February 2007 for studies of instruments relevant to physical, psychological, social, cultural, spiritual, or ethical aspects of palliative care, or measuring prognosis, function or continuity of care. Publications were selected for full review if they provided evidence of psychometric properties or practical application of an instrument tested in or appropriate for a hospice or palliative care population. Selected instruments were evaluated and scored for scientific soundness and potential application in clinical quality measurement. Results: The search found 1427 publications, with 229 selected for full manuscript review. Manuscripts provided information on 129 instruments which were evaluated using a structured scoring guide for psychometric properties. Thirty-nine instruments scoring near or above the 75th percentile were recommended. Most instruments covered multiple domains or focused on care for physical symptoms, psychological or social aspects of care. Few instruments were available to measure cultural aspects of care, structure and process of care, and continuity of care. Conclusion: Numerous patient-level instruments are available to measure physical, psychological and social aspects of palliative care with adequate evidence for scientific soundness and practical clinical use for quality improvement and research. Other aspects of palliative care may benefit from further instrument development research. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To describe two versions of a new measure, The Quality of Dying in Long-Term Care, for postdeath administration to surrogate respondents (staff and family caregivers) of all decedents (QOD-LTC) and of cognitively intact decedents (QOD-LTC-C) who die in nursing homes (NHs) and residential care or assisted living (RC/AL) facilities. DESIGN: Using two levels of exploratory factor analysis, 15 candidate items for the QOD-LTC and 36 candidate items for the QOD-LTC-C were tested using multiple criteria to determine factor structure and interpretability of the quality of dying in long-term care (LTC). SETTING: One hundred seventeen RC/AL facilities and 31 NHs in FL, MD, NC, and NJ. PARTICIPANTS: Family (n=439) and staff (n=332) caregivers of 633 decedents from a stratified random sample from RC/AL facilities and NHs in four states. MEASUREMENTS: Trained interviewers asked respondents to rate statements describing potentially important aspects of the quality of dying using a 5-point Likert scale. The scale items were analyzed using exploratory factor analysis with communalities set to unity using a Promax rotation. RESULTS: The 11-item QOD-LTC (α=0.66), appropriate for surrogate respondents for all decedents, consists of three domains (personhood, closure, preparatory tasks). The 23-item instrument for surrogate respondents of cognitively intact decedents, the QOD-LTC-C (α=0.85), consists of five domains (sense of purpose, closure, control, social connection, preparatory tasks). CONCLUSION: The QOD-LTC and QOD-LTC-C are psychometrically acceptable measures of the quality of the dying experience, developed for and tested in LTC settings. Use of these measures can increase understanding of the dying experience in LTC. [ABSTRACT FROM AUTHOR]

Examines the frequency of life-sustaining treatment use by community physicians in North Carolina, who provide terminal care. Factors influencing treatment decisions in community-based practices; Concern about the quality of care for the dying; Telephone interviews with family informants; Decisions on advance care planning. INSET: Subjects and methods..

During an intertroop encounter, an infanticide was observed in a population of ringtailed lemurs (Lemur catta) at Berenty Reserve, Madagascar. The killer was a male that had not been previously observed to mate with any females in the infant's troop. This observation, combined with other observations of infanticidal behavior by males at Berenty Reserve and the Duke University Primate Center, is consistent with the hypothesis that infanticide is a reproductive tactic for some male ringtailed lemurs. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Design: Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Setting: Two NHs in North Carolina. Participants: Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. Intervention: (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Measurements: Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Results: Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001). Conclusions: The decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. [Copyright &y& Elsevier]

Abstract: Objectives: In advanced dementia, feeding problems are nearly universal, and families face difficult decisions about feeding options. Initial interviews for a randomized trial were used to describe surrogates’ perceptions of feeding options, and to determine whether a decision aid on feeding options in advanced dementia would improve knowledge, reduce expectation of benefit from tube feeding, and reduce conflict over treatment choices for persons with advanced dementia. Design: Semistructured interview with prestudy and poststudy design for surrogates in the intervention group. Setting: Twenty-four skilled nursing facilities across North Carolina participating in a cluster randomized trial. Participants: Two hundred and fifty-five surrogate decision makers for nursing home residents with advanced dementia and feeding problems, in control (n = 129) and intervention (n = 126) groups. Intervention: For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions. Measurements: The interview included open-ended items asking surrogates to report advantages and disadvantages of tube feeding and assisted oral feeding. Knowledge of feeding options was measured with 19 true/false items and items measuring expectation of benefit from tube feeding. Surrogates reported which of these two feeding options they preferred for the person with dementia, and how confident they were in this choice; their level of conflict about the choice was measured using the decisional conflict scale. Results: Before the decision aid, surrogates described advantages and disadvantages of assisted oral feeding and tube feeding in practical, ethical, and medical terms. After review of the decision aid, intervention surrogates had improved knowledge scores (15.5 vs 16.8; P < .001), decreased expectation of benefits from tube feeding (2.73 vs 2.32; P = .001), and reduced decisional conflict (2.24 vs 1.91; P < .001). Surrogates preferred assisted oral feeding initially and reported more certainty about this choice after the decision aid. Conclusions: A structured decision aid can be used to improve decision making about feeding options in dementia care. [Copyright &y& Elsevier]

In dynamic systems, organisms are faced with variable selective forces that may impose trade-offs. In estuaries, salinity is a strong driver of organismal diversity, while parasites shape species distributions and demography. We tested for trade-offs between low-salinity stress and parasitism in an invasive castrating parasite and its mud crab host along salinity gradients of two North Carolina rivers. We performed field surveys every six to eight weeks over 3 years to determine factors influencing parasite prevalence, host abundance, and associated taxa diversity. We also looked for signatures of low-salinity stress in the host by examining its response (time-to-right and gene expression) to salinity. We found salinity and temperature significantly affected parasite prevalence, with low-salinity sites (less than 10 practical salinity units (PSU)) lacking infection, and populations in moderate salinities at warmer temperatures reaching prevalence as high as 60%. Host abundance was negatively associated with parasite prevalence. Host gene expression was plastic to acclimation salinity, but several osmoregulatory and immune-related genes demonstrated source-dependent salinity response. We identified a genetic marker that was strongly associated with salinity against a backdrop of no neutral genetic structure, suggesting possible selection on standing variation. Our study illuminates how selective trade-offs in naturally dynamic systems may shape host evolutionary ecology.

Variability in transplant access exists, but barriers to referral and evaluation are underexplored due to lack of national surveillance data. We examined referral for kidney transplantation evaluation and start of the evaluation among 34 857 incident, adult (18-79 years) end-stage kidney disease patients from 690 dialysis facilities in the United States Renal Data System from January 1, 2012 through August 31, 2016, followed through February 2018 and linked data to referral and evaluation data from nine transplant centers in Georgia, North Carolina, and South Carolina. Multivariable-adjusted competing risk analysis examined each outcome. The median within-facility cumulative percentage of patients referred for kidney transplantation within 1 year of dialysis at the 690 dialysis facilities in Network 6 was 33.7% (interquartile range [IQR]: 25.3%-43.1%). Only 48.3% of referred patients started the transplant evaluation within 6 months of referral. In multivariable analyses, factors associated with referral vs evaluation start among those referred at any time differed. For example, black, non-Hispanic patients had a higher rate of referral (hazard ratio [HR]: 1.22; 95% confidence interval [CI]: 1.18-1.27), but lower evaluation start among those referred (HR: 0.93; 95% CI: 0.88-0.98), vs white non-Hispanic patients. Barriers to transplant varied by step, and national surveillance data should be collected on early transplant steps to improve transplant access., (© 2020 The American Society of Transplantation and the American Society of Transplant Surgeons.)

Background: Although community-based serious-illness care (CBSC) is an innovative care model, it is unclear to what extent CBSC addresses palliative care needs, particularly for those patients near death. Objectives: To evaluate palliative care services of a CBSC program. Design: Retrospective chart reviews. Setting/Subjects: Patients enrolled in a CBSC program in central North Carolina. Measurement: Descriptive statistics of palliative care needs and services, such as symptom management, psychosocial support, and advance care planning (ACP), for survivors and decedents. Results: Patients were seen in an 18-month time frame ( n  = 159). Mean enrollment in the program was 261.1 days (standard deviation 180.6). Patients' average age was 70 years, 56% were female, and 33% were black. Patients' most frequent comorbidities were dementia (32%), heart failure (32%), and diabetes (28%). Fifty patients (31%) died during the study period. Clinicians most frequently screened for pain (70%), constipation (57%), and dyspnea (57%). Of those screened positive, clinicians most frequently treated pain (92%), anxiety (84%), and constipation (83%). Among the 54% who screened positive for psychosocial distress, 82% received support. Clinicians screened 22% for spiritual needs; 4% received spiritual care. Among decedents, 66% were enrolled in hospice; 14% died in in-hospital. Decedents were more likely than survivors to have ACP (34% vs. 18%, p  = 0.03) and a primary goal of comfort (40% vs. 12%, p  < 0.01). Conclusions: A CBSC program provided palliative care services comparable with other home-based palliative care programs. Although the CBSC program does not address all domains of palliative care, it provided most with symptom management, psychosocial support, and ACP.

Background: Casarett et al. tested an intervention to improve timeliness of referrals to hospice. Although efficacious in the nursing home setting, it was not tested in other settings of care for seriously ill patients. We, therefore, adapted Casarett's intervention for use in home health (HH). Objective: To assess feasibility, acceptability, and patient outcomes of the adapted intervention. Design: We conducted a nine-week observational pilot test. Setting/Subjects: We conducted our pilot study with two HH agencies. Eligible patients included those who were high risk or frail (identified by the agencies' analytic software as being moderate to high risk for hospitalization or a candidate for hospice referral). Clinical managers identified eligible patients and registered nurses then delivered the intervention, screening patients for hospice appropriateness by asking about care goals, needs, and preferences and initiating appropriate follow-up for patients who screened positive. Measurements: We collected quantitative data on patient enrollment rates and outcomes (election of hospice and/or palliative care). We collected qualitative data on pilot staff experience with the intervention and suggestions for improvement. Results: Pilot HH agencies were able to implement the intervention with high fidelity with minimal restructuring of workflows; 14% of patients who screened positive for hospice appropriateness elected hospice or palliative care. Conclusions: Our findings suggest the adapted intervention was feasible and acceptable to enhance timeliness of hospice and palliative care referral in the HH setting. Additional adaptations suggested by pilot participants could improve impact of the intervention.

Objectives: (1) Compare family decision-makers' perceptions of quality of communication with nursing home (NH) staff (nurses and social workers) and clinicians (physicians and other advanced practitioners) for persons with advanced dementia; (2) determine the extent to which characteristics of NH residents and family decision-makers are associated with those perceptions., Design: Secondary analysis of baseline data from a cluster randomized trial of the Goals of Care intervention., Setting: Twenty-two NHs in North Carolina., Participants: Family decision-makers of NH residents with advanced dementia (n = 302)., Measurements: During the baseline interviews, family decision-makers rated the quality of general communication and communication specific to end-of-life care using the Quality of Communication Questionnaire (QoC). QoC item scores ranged from 0 to 10, with higher scores indicating better quality of communication. Linear models were used to compare QoC by NH provider type, and to test for associations of QoC with resident and family characteristics., Results: Family decision-makers rated the QoC with NH staff higher than NH clinicians, including average overall QoC scores (5.5 [1.7] vs 3.7 [3.0], P < .001), general communication subscale scores (8.4 [1.7] vs 5.6 [4.3], P < .001), and end-of-life communication subscale scores (3.0 [2.3] vs 2.0 [2.5], P < .001). Low scores reflected failure to communicate about many aspects of care, particularly end-of-life care. QoC scores were higher with later-stage dementia, but were not associated with the age, gender, race, relationship to the resident, or educational attainment of family decision-makers., Conclusion: Although family decision-makers for persons with advanced dementia rated quality communication with NH staff higher than that with clinicians, they reported poor quality end-of-life communication for both staff and clinicians. Clinicians simply did not perform many communication behaviors that contribute to high-quality end-of-life communication. These omissions suggest opportunities to clarify and improve interdisciplinary roles in end-of-life communication for residents with advanced dementia., (Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Purpose Racial variation in the financial impact of cancer may contribute to observed differences in the use of guideline-recommended treatments. We describe racial differences with regard to the financial impact of breast cancer in a large population-based prospective cohort study. Methods The Carolina Breast Cancer Study oversampled black women and women younger than age 50 years with incident breast cancer in North Carolina from 2008 to 2013. Participants provided medical records and data regarding demographics, socioeconomic status, and financial impact of cancer at 5 and 25 months postdiagnosis. We report unadjusted and adjusted financial impact at 25 months postdiagnosis by race. Results The sample included 2,494 women who completed follow-up surveys (49% black, 51% white). Since diagnosis, 58% of black women reported any adverse financial impact of cancer ( v 39% of white women; P < .001). In models adjusted for age, stage at diagnosis, and treatment received, black women were more likely to report adverse financial impact attributable to cancer (adjusted risk difference [aRD], +14 percentage points; P < .001), including income loss (aRD, +10 percentage points; P < .001), health care-related financial barriers (aRD, +10 percentage points; P < .001), health care-related transportation barriers (aRD, +10 percentage points; P < .001), job loss (aRD, 6 percentage points; P < .001), and loss of health insurance (aRD, +3 percentage points; P < .001). The effect of race was attenuated when socioeconomic factors were included but remained significant for job loss, transportation barriers, income loss, and overall financial impact. Conclusion Compared with white women, black women with breast cancer experience a significantly worse financial impact. Disproportionate financial strain may contribute to higher stress, lower treatment compliance, and worse outcomes by race. Policies that help to limit the effect of cancer-related financial strain are needed.

Purpose: Although racial disparities in health-related quality of life (HRQOL) among women with breast cancer (BC) are well documented, less is known about HRQOL changes over time among women of different races. Our objective was to assess racial differences in HRQOL during active treatment and survivorship phases of BC care., Methods: We used data from the third phase of the Carolina Breast Cancer Study (CBCS-III). CBCS-III enrolled 3000 women in North Carolina aged 20-74 years diagnosed with BC between 2008 and 2013. HRQOL assessments occurred 5 and 25 months post diagnosis, representing distinct phases of care. HRQOL measures included the Functional Assessment of Cancer Therapy for BC and Functional Assessment of Chronic Illness Therapy for Spiritual Well-Being. Analysis of covariance models were employed to assess racial differences in changes in HRQOL., Results: The cohort included 2142 Non-Hispanic White (n = 1105) and Black women (n = 1037) who completed both HRQOL assessments. During active treatment, Whites reported physical and functional scores 2-2.5 points higher than Blacks (p < 0.0001). Spiritual HRQOL was 2.1 points higher for Blacks (p < 0.0001). During survivorship, differences persisted. After adjusting for demographic, socioeconomic, tumor, and treatment characteristics, physical and functional HRQOL gaps narrowed, but spiritual HRQOL gaps widened., Conclusions: Racial differences in physical and functional HRQOL during active treatment and survivorship may be largely mediated by socioeconomic factors. However, our results suggest that among Black women, spiritual HRQOL is well supported throughout the BC care continuum. These results inform opportunities for improving the quality and equity of supportive services for women with BC.

Context: There are few data on the frequency and current management of clinical ethical issues related to care of seriously ill dialysis patients in free-standing dialysis facilities., Objectives: To examine the extent of clinical ethical challenges experienced by care providers in free-standing facilities and their perceptions about how those issues are managed., Methods: A total of 183 care providers recruited from 15 facilities in North Carolina completed a survey regarding the occurrence and management of ethical issues in the past year. Care plan meetings were observed at four of the facilities for three consecutive months. Also, current policies and procedures at each of the facilities were reviewed., Results: The two most frequently experienced challenges involved dialyzing frail patients with multiple comorbidities and caring for disruptive/difficult patients. The most common ways of managing ethical issues were discussions in care plan meetings (n = 47) or discussions with the clinic manager (n = 47). Although policies were in place to guide management of some of the challenges, respondents were often not aware of those policies. Also, although participants reported that ethical issues related to dialyzing undocumented immigrants were fairly common, no facility had a policy for managing this challenge. Participants suggested that all staff obtain training in clinical ethics and communication skills, facilities develop ethics teams, and there be clear policies to guide management of ethical challenges., Conclusion: The scope of ethical challenges was extensive, how these challenges were managed varied widely, and there were limited resources for assistance. Multifaceted efforts, encompassing endeavors at the individual, facility, organization, and national levels, are needed to support staff in improving the management of ethical challenges in dialysis facilities., (Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Compared with non-Latinos, Latinos in the US have low rates of colorectal cancer (CRC) screening and low rates of knowledge regarding CRC screening tests and guidelines. Spanish speaking Latinos have particularly low CRC screening rates and screening knowledge. Our purpose was twofold: (1) to evaluate the effect of a computer-based, Spanish-language CRC screening decision aid on screening knowledge, intent to obtain screening, and screening self-efficacy in a community sample of Latinos with limited English proficiency (LEP); and (2) to survey these decision aid viewers at four months to determine their rates of CRC discussions with a health care provider as well as their rates of screening test completion., Methods: We recruited 50-75 year old Latinos with LEP who were not current with CRC. Participants screening viewed a 14 minute multimedia decision aid that addresses CRC screening rationale, recommendations, and options. We conducted an uncontrolled (pre-post) study in which we assessed screening knowledge, self-efficacy, and intent at baseline and immediately after decision aid viewing. We also conducted a follow-up telephone survey of participants at four months to examine rates of patient-provider screening discussions and test completion., Results: Among n = 80 participants, knowledge scores increased from 20% (before) to 72% (after) decision aid viewing (absolute difference [95%CI]: 52% [46, 59]). The proportion with high screening self-efficacy increased from 67% to 92% (25% [13, 37]); the proportion with high screening intent increased from 63% to 95% (32% [21, 44]). We reached 68 (85%) of 80 participants eligible for the follow-up survey. Of these 36 (53%) reported discussing screening with a provider and 13 (19%) completed a test., Conclusion: Viewing a Spanish-language decision aid increased CRC screening knowledge, self-efficacy, and intent among Latinos with LEP. Decision aid viewing appeared to promote both CRC screening discussions with health care providers and test completion. The decision aid may be an effective tool for promoting CRC screening and reducing screening disparities in this population.

Background: One in four Americans, and 70% of people who have dementia, will spend their final days in nursing home care. Clinical research, particularly clinical trials, rarely includes this population due to unique challenges in research methods and ethics. Families of advanced dementia patients make choices about tube feeding and other feeding options with limited access to information or communication. The cluster randomized trial, Improving Decision Making about Feeding Options for Dementia Patients, tests a decision aid intervention to improve the quality of decision making for this choice., Purpose: Our objectives are (1) to describe the methods used in this trial; (2) to describe challenges and strategies for effective nursing home and nursing home resident recruitment and retention; and (3) to describe research ethics approaches to minimize harms and maximize benefits for this population., Methods: The study is a cluster randomized trial of a decision aid to inform and support the choice between tube feeding and assisted oral feeding in advanced dementia. Study subjects are paired surrogate decision makers and residents with advanced dementia and feeding problems, enrolled from nursing homes in North Carolina., Results: This trial enrolled 256 paired surrogate decision makers and residents in 24 nursing home sites, and 99% completed participation through the 3-month study period. The research team had prior clinical and investigative experience in this setting, and used multiple strategies to recruit and retain nursing home sites, providers, surrogates, and the residents for whom they spoke. Informed consent and human subjects' protections were designed to address the vulnerability of this population., Limitations: Cluster randomization was necessary to avoid contamination between control and intervention subjects, but may introduce confounding by site and intracluster correlation effects in analyses., Conclusions: Strategies that facilitate nursing home recruitment, participant recruitment and protection of human subjects for a vulnerable population may be used by future investigators to expand the research evidence base for nursing home and dementia care.

Purpose: To explore and identify communication and decision making with health care providers for African Americans living with cancer and for their families., Methods: We used focus group interviews to identify and explore cultural perceptions, expectations, and desires as they relate to quality of life domains., Participants: Of the 42 African American participants, 33 were women. Half of the participants (n = 21) were caregivers of a family member with cancer; the others were cancer survivors and some of them had also cared for a loved one with cancer., Results: Participants focused on effective communication and decision making as fundamental to overall quality of life. Furthermore, physicians were viewed as having the responsibility to establish and monitor effective communication with patients and families. Within the domain of effective communication, participants stressed that health care providers needed to know the person and family and to tailor communication with them based on that knowledge. Within the domain of decision making, participants emphasized having a sense of control over treatment choices. They also expressed concerns for populations made vulnerable by advanced age, poverty, or low levels of formal education., Discussion: Our participants indicated that relationship-centered care, in which one's sense of personhood is sought, acknowledged, and worked with, is foundational for effective communication and decision making.

Objective: One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings., Methods: We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care--advance care planning and pain management--and on residents' demographic and health status variables. Analyses tested for differences by race and age., Results: White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race., Significance of Results: To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

Objectives: (1) To determine surrogates perceptions about who made the decision to place the feeding tube and who they would have preferred to have made the decision. (2) To determine surrogates' perceptions of the information they received to make this decision., Methods: Structured interviews with 246 surrogate decision-makers., Results: Fifty-five percent of surrogates felt that the decision was made primarily by the surrogate, but 75% would prefer that the decision be shared with the physician. Surrogates reported that they discussed the benefits (80%) and the risks (72%) of feeding tube placement and discussed what life would be like with the feeding tube (65%) and without the feeding tube (67%). They also reported being asked if they understood the information (85%) and their thoughts about placement (56%). Despite receiving this information, 28 to 41% reported wanting more information about these aspects., Conclusion: Surrogates would have preferred greater physician participation in decisions about feeding tube placement and many reported that their informational needs were not completely met., Practice Implications: These results suggest that physicians may be justified in taking a more active role in feeding tube decisions with surrogates and that many surrogates desire more information than is required by standards of informed decision making.

Background and Objectives: Hospice improves the quality of end of life care in nursing homes but serves less than 10% of dying residents. For residents to elect hospice, nursing homes must first contract for these services. We surveyed nursing home and hospice administrators to describe facilitators and barriers to hospice in nursing homes, and to test whether nursing home administrators' attitudes correlate with hospice use., Methods: In a mailed survey, all nursing home and hospice administrators in North Carolina responded to items on hospice's effect on quality of care, and on facilitators and barriers to its use in nursing homes. Among nursing home administrators, bivariate analyses were used to test associations of attitudes with use of hospice., Results: After 2 mailings, 241 (62%) nursing home administrators and 74 (85%) hospice administrators responded. Eighty-three percent of nursing homes had a hospice contract, with a median of 3 residents enrolled in the last 3 months. Nursing home administrators were less likely than hospice administrators to believe that hospice improves quality of care for pain, emotional and spiritual needs, and bereavement support. Nursing home administrators were more likely to agree that, "Nursing homes provide good care without using hospice for dying residents and their families," (24% versus 1%, p < 0.001). Among nursing home administrators with a hospice contract (n = 180), those who agreed that hospice improves quality of care had higher rates of hospice use in their facilities., Conclusions: Nursing home administrators' attitudes toward hospice may influence its availability for nursing home residents.

Objective: To describe the palliative care needs of dying nursing home residents during the last 3 months of life., Methods: Nurses, aides, and family members completed structured interviews after all deaths of residents in two nursing homes during a 1-year study period. For each resident who died, family and staff caregivers answered parallel questions on the presence of physical and emotional symptoms, unmet needs for treatment of these symptoms, and the quality of the dying experience., Results: Of 259 eligible respondents 176 completed interviews (68%). Decedents' average age was 82, and 90% died in the nursing home rather than in a hospital. Most deaths were preceded by orders to withhold resuscitation (79%) and other treatments (39%). The most common physical symptoms were pain (86%), problems with personal cleanliness (81%), dyspnea (75%), incontinence (59%), and fatigue (52%). Depressed mood (44%), anxiety (31%), and loneliness (21%) were common emotional symptoms. Respondents believed residents needed more treatment than they received for emotional symptoms (30%), personal cleanliness (23%) and pain (19%). Fifty-eight percent of respondents believed the resident experienced a "good death," as they would have wanted it to be., Conclusions: Dying nursing home residents need improved emotional and spiritual care, help with personal cleanliness, and treatment for pain. Efforts to improve end-of-life care in nursing homes should combine traditional palliative care services with increased attention to emotional symptoms and personal care services.