A Survey of State Correctional Health Care Providers on Advance Care Planning: Opportunity for Collaboration With Corrections.

Prison populations are rapidly aging. Persons in prison age quicker and suffer more chronic illness and disability than their nonincarcerated peers, posing challenges to caring for prisoners who are chronically ill and dying. The goal of our study was to describe state prisons' practices and policies addressing persons in prison with advanced chronic and life limiting illness through a national web-based survey of state-level prison health care professionals. In particular, we focused on advanced care planning, use of health care directives, decision-making about goals of care, including life sustaining treatments, The response rate was 22% for a sample size 152 completed surveys. The average age of respondent was 52 years; majority were female and Caucasian, and had worked in corrections more than 8 years. Nearly half were registered nurses. Most reported their prison did not have a dedicated end-of-life care program and only 11% offered a peer-care program. However, two-thirds indicated their facility provided the opportunity to designate a health care agent with physicians most likely responsible for facilitating completion of a health care directive. It is evident the care of persons aging and dying in prison is complex and requires further investigation addressing staff and prison population education, ethics guidelines for care, compassionate release, and advance care planning. This study suggests that hospice and palliative care professionals could collaborate with corrections professionals and national organizations to provide innovative education and support to enhance the humane care of this vulnerable population.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Technology-Assisted mHealth Caregiver Support to Manage Cancer Patient Symptoms: A Randomized Controlled Trial.

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.

Mistrust Reported by US Mexicans With Cancer at End of Life and Hospice Enrollment.

Hospice research with Hispanics mostly focuses on cultural barriers. Mindful of social justice and structural violence, we used critical grounded theory in a postcolonial theory framework to develop a grounded theory of hospice decision making in US Mexicans with terminal cancer. Findings suggest that hospice avoidance is predicted by mistrust, rather than culture, whereas hospice enrollers felt a sense of belonging. Cultural accommodation may do little to mitigate hospice avoidance rooted in discrimination-fueled mistrust. Future research with nondominant populations should employ research designs mitigating Eurocentric biases. Policy makers should consider concurrent therapy for nondominant populations with low trust in the health care system.

Dissemination and Implementation of Patient-centered Indicators of Pain Care Quality and Outcomes.

BACKGROUND: Previous approaches to measuring and improving nursing-sensitive, patient-centered metrics of pain quality and outcomes in hospitalized patients have been limited. METHODS: In this translational research study, we disseminated and implemented pain quality indicators in 1611 medical and/or surgical, step-down, rehabilitation, critical access, and obstetrical (postpartum) units from 326 US hospitals participating in the National Database of Nursing Quality Indicators. Eligible patients were English-speaking adults in pain. Trained nurses collected patients' perceptions via structured interview including 9 pain quality indicators, demographic, and clinical variables; these patient experience data were merged with unit and hospital level data. Analyses included geographic mapping; summary statistics and 3-level mixed effects modeling. RESULTS: Hospitals in 45 states and District of Columbia participated. Of 22,293 screened patients, 15,012 were eligible; 82% verbally consented and participated. Pain prevalence was 72%. Participants were 59.4% female; ages ranged from 19 to 90+ (median: 59 y); 27.3% were nonwhite and 6.5% were Hispanic. Pain intensity on average over the past 24 hours was 6.03 (SD=2.45) on a 0-10 scale. 28.5% of patients were in severe pain frequently or constantly. Race (nonwhite), younger age, being female and nonsurgical were associated (P<0.001) with greater pain. Care quality indicators ranking lowest related to discussion of analgesic side effects and use of nonpharmacologic approaches. CONCLUSIONS: Unrelieved pain remains a high-volume problem. Individual factors and unit type were significantly associated with pain outcomes. Hospitals can employ these quality indicators to direct continuous quality improvement targeting pain care quality.

Context Matters for Nurses Leading Pain Improvement in U.S. Hospitals.

BACKGROUND: Pain continues to be a problem in hospitalized patients. Contextual factors contribute to the success of pain quality improvement efforts. AIMS: This paper describes nurse team leaders' perceptions of organizational context and factors perceived to help and hinder the process of leading a unit-based improvement effort focused on pain. DESIGN: Qualitative descriptive design. SETTING: Interviews took place over the telephone. PARTICIPANTS: Nurses from 106 hospitals across the United States. METHODS: Investigators interviewed 125 nurses leading a unit-based pain quality improvement project in partnership with the National Database of Nursing Quality Indicators. Lewin's Field Theory guided a thematic analysis. RESULTS: Key contextual factors related to the amount of change in the health care environment and characteristics of the organization and providers. Helping forces included characteristics of nurses, teamwork, a culture of quality, opportunities for learning, pain management resources, and accountability for pain management. Hindering forces included: barriers to involvement, attitudes and relationships, lack of knowledge, and types of patients. CONCLUSIONS: Overcoming the pervasive barriers of constant change and lack of staff involvement while also capitalizing on the culture of quality and characteristics of the health care team may further enhance and sustain improvement efforts related to pain management of hospitalized patients. New models for influencing quality improvement could be strengthened with involving frontline staff in both planning and implementation of improvement efforts. CLINICAL IMPLICATIONS: Because of the diverse responses, it is recommended that each unit conduct a force-field analysis to guide successful implementation of improvement efforts.

Care in Nursing Facilities after Palliative Consult.

Despite hospital palliative care consultations during which goals of care are discussed in the context of poor prognoses, older adults are admitted to nursing homes for post-acute care where the focus is on rehabilitation. The purpose of this qualitative descriptive study was to describe factors that influence discontinuity between a palliative care consult and nursing home care and explore the potential consequences of this discontinuity. Twelve adults (mean age of 80 years) were enrolled from one community hospital and nursing home in the mid-Atlantic United States. Semi-structured interviews and medical record reviews were used to elicit information about clinical course, care processes, and patient/family preferences at hospital discharge and up to four times after nursing home admission. Data were analyzed using inductive content analysis techniques. Analysis revealed two themes: Inadequate Communication characterized by the lack of information about the palliative care consult after hospital discharge and Prognosis Incongruence evidenced by data demonstrating a discrepancy between hospital prognosis and nursing home care. Ongoing communication between settings to re-address goals of care, prognosis, and symptoms-the central tenets of palliative care-is lacking. Efforts to improve access to comprehensive palliative care delivery after hospitalization and during nursing home transitions are greatly needed.

Supporting home hospice family caregivers: Insights from different perspectives.

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. METHOD: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. RESULTS: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05). SIGNIFICANCE OF RESULTS: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Obstetrical Brachial Plexus Palsy.

Obstetrical brachial plexus palsy is a disorder of the peripheral nervous system and occurs in as many as 0.4% of infants born. It is associated with shoulder dystocia, use of mechanical extraction, and macrosomia; it occurs more frequently in infants born by vaginal delivery. The unilateral injury to the brachial plexus complex occurs during the delivery phase as lateral traction is applied to the head to permit shoulder clearance. The infant typically presents in the delivery room with decreased active movements of the affected arm and asymmetrical primitive reflex responses. The severity of nerve involvement can range from a stretch injury to complete avulsion. While full recovery is possible, prognosis is variable and up to 35% of children may have some degree of life-long functional impairment of the affected limb.

Nursing home care trajectories for older adults following in-hospital palliative care consultation.

Palliative care consultation (PCC) during hospitalization is increasingly common for older adults with life-limiting illness discharged to nursing homes. The objective of this qualitative descriptive study was to describe the care trajectories and experiences of older adults admitted to a nursing home following a PCC during hospitalization. Twelve English-speaking adults, mean age 80 years, who received a hospital PCC and discharge to a nursing home without hospice. Data were collected from medical records at five time points from hospital discharge to 100 days after nursing home admission and care trajectories were mapped. Interviews (n = 15) with participants and surrogates were combined with each participant's medical record data. Content analysis was employed on the combined dataset. All PCC referrals were for goals of care conversations during which the PCC team discussed poor prognosis. All participants were admitted to a nursing home under the Medicare skilled nursing facility benefit. Seven were rehospitalized; six of the 12 died within 6 weeks of initial nursing home admission. The two care trajectories were Focus on Rehabilitative Care and Comfort Care Continuity. There was a heavy emphasis on recovering functional status through rehabilitation and skilled nursing care, despite considerable symptom burden and poor prognosis. Regardless of PCC with recommendations for palliative interventions, frail older adults with limited life expectancy and their family caregivers often perceive that rehabilitation will improve physical function. This perception may contribute to inappropriate, ineffective care. More emphasis is needed to coordinate care between PCC recommendations and post-acute care.

Caring to Learn and Learning to Care.

The increasing numbers of aging and chronically ill prisoners incarcerated in Western nations is well-documented, as is the growing need for prison-based palliative and end-of-life care. Less often discussed is specifically how end-of-life care can and should be provided, by whom, and with what resources. One strategy incorporates prisoner volunteers into end-of-life services within a peer-care program. This article reports on one such program based on focused ethnographic study including in-depth interviews with inmate hospice volunteers, nursing staff, and corrections officers working in the hospice program. We describe how inmate volunteers learn hospice care through formal education and training, supervised practice, guidance from more experienced inmates, and support from correctional staff. We discuss how emergent values of mentorship and stewardship are seen by volunteers and staff as integral to prison hospice sustainability and discuss implications of this volunteer-centric model for response-ability for the end-of-life care of prisoners.

The Symptom Experience in Rectal Cancer Survivors.

CONTEXT: As the number of rectal cancer survivors grows, it is important to understand the symptom experience after treatment. Although data show that rectal cancer survivors experience a variety of symptoms after diagnosis, little has been done to study the way these symptoms are grouped and associated. OBJECTIVES: To determine symptom prevalence and intensity in rectal cancer survivors and if clusters of survivors exist, who share similar symptom-defined survivor subgroups that may vary based on antecedent variables. METHODS: A secondary analysis of the Cancer Care and Outcomes Research and Surveillance database was undertaken. Cluster analysis was performed on 15-month postdiagnosis data to form post-treatment survivor subgroups, and these were examined for differences in demographic and clinical characteristics. Data were analyzed using cluster analysis, chi-square, and analysis of variance. RESULTS: A total of 275 rectal cancer survivors were included who had undergone chemotherapy, radiation therapy, and surgery. Most frequently reported symptoms included feeling "worn out" (87%), feeling "tired" (85%), and "trouble sleeping" (66%). Four symptom-defined survivor subgroups (minimally symptomatic n = 40, tired and trouble sleeping n = 138, moderate symptoms n = 42, and highly symptomatic n = 55) were identified with symptom differences existing among each subgroup. Age and being married/partnered were the only two antecedents found to differ across subgroups. CONCLUSION: This study documents differences in the symptom experience after treatment. The identification of survivor subgroups allows researchers to further investigate tailored, supportive care strategies to minimize ongoing symptoms in those with the greatest symptom burden.

Oncology Nursing Certification: Relation to Nurses' Knowledge and Attitudes About Pain, Patient-Reported Pain Care Quality, and Pain Outcomes.

PURPOSE/OBJECTIVES: To (a) compare pain knowledge and attitudes between nurses with oncology certified nurse (OCN®) status, non-OCN®-certified nurses, and nurses ineligible for certification and (b) examine the relationships among OCN® status, nurses' knowledge and attitudes about pain, patient-reported quality of nursing pain care, and pain outcomes. 
. DESIGN: Prospective, correlational survey design. Patients were nested within nurses. 
. SETTING: Six inpatient oncology units in three hospitals. SAMPLE: 91 nurses in three states (28 OCN®-certified nurses, 37 noncertified nurses, and 26 not eligible for certification). Certification status was validated for 105 nurses who were matched with a sample of 320 patients. 
. METHODS: Nurses completed a survey, and matched adult patients who were experiencing pain rated their pain care quality and pain experience during the past shift. 
. MAIN RESEARCH VARIABLES: Demographic characteristics, certification status, and responses to the Nurse Knowledge and Attitudes Survey Regarding Pain (NKASRP), Pain Care Quality Survey-Nursing, and modified Brief Pain Inventory (Short Form). 
. FINDINGS: OCN®-certified nurses scored significantly higher on the NKASRP (82% correct) compared to non-OCN® eligible nurses (76%) and non-OCN® ineligible nurses (74%) (p < 0.001). Only 43% overall achieved a benchmark of 80% correct. No statistically significant relationships existed between (a) certification status and pain care quality or pain outcomes or (b) NKASRP and care quality or outcomes (p > 0.05).
. CONCLUSIONS: OCN®-certified nurses' knowledge and attitudes related to pain management were superior to noncertified nurses. Neither knowledge and attitudes nor OCN® status were associated with pain care quality or pain outcomes. 
. IMPLICATIONS FOR NURSING: Knowledge is necessary but insufficient to improve patient outcomes; providing optimal pain care requires action. Sustained efforts to improve cancer pain management are indicated.

Essential Elements of an Effective Prison Hospice Program.

As the number of prison inmates facing end-stage chronic illness grows, more prisons across the U.S. must address the need for end-of-life care. Many will likely need to develop a plan with potentially limited resources and external support. This case study presents one long-running model of care, the Louisiana State Penitentiary Prison Hospice Program. Based on field observations and in-depth interviews with hospice staff, inmate volunteers and corrections officers, we identify five essential elements that have contributed to the long-term operation of this program: patient-centered care, an inmate volunteer model, safety and security, shared values, and teamwork. We describe key characteristics of each of these elements, discuss how they align with earlier recommendations and research, and show how their integration supports a sustained model of prison end-of-life care.

The Meanings African American Caregivers Ascribe to Dementia-Related Changes: The Paradox of Hanging on to Loss.

PURPOSE OF THE STUDY: Using an interpretive phenomenological approach, this study explored the meaning African American (AA) caregivers ascribed to the dementia-related changes in their care-recipients. DESIGN AND METHODS: Data were gathered in this qualitative study with 22 in-depth interviews. Eleven AA caregivers for persons with dementia, living in the Pacific Northwestern United States, were interviewed twice. Four caregivers participated in an optional observation session. RESULTS: Analysis based on the hermeneutic circle revealed that, for these caregivers, the dementia-related changes meant that they had to hang on to the care-recipients for as long as possible. Caregivers recognized that the valued care-recipients were changed, but still here and worthy of respect and compassion. Ancestral family values, shaped by historical oppression, appeared to influence these meanings. IMPLICATIONS: The results from this study suggest that AA caregivers tend to focus on the aspects of the care-recipients' personalities that remain, rather than grieve the dementia-related losses. These findings have the potential to deepen gerontologists' understanding of the AA caregiver experience. This, in turn, can facilitate effective caregiver decision making and coping.

Characteristics of Prison Hospice Patients: Medical History, Hospice Care, and End-of-Life Symptom Prevalence.

Increasing numbers of prisoners in the United States are dying from age-related and chronic illnesses while incarcerated. This study is among the first to document characteristics of a population of prison hospice patients. Retrospective review of medical records for all patients admitted to the Louisiana State Penitentiary prison hospice program between January 1, 2004, and May 31, 2012 (N = 79) examined demographics, medical history, hospice diagnosis, length of stay, and end-of-life symptom prevalence on admission and during final 72 hours before death. Resulting data were contrasted with community-based end-of-life care study data, demonstrating a unique clinical profile of this group. As prisons consider adopting programs to meet the growing need for inmate end-of-life care, more research concerning the particular characteristics and unique needs of prison hospice patients will inform these efforts.

Antipsychotic medication prescribing in children enrolled in Medicaid.

BACKGROUND: Although the increase in treatment of children and adolescents with antipsychotic medications has been well documented, much less is known about the factors related to the use of these agents and how closely the treatment follows best practice recommendations. METHODS: Prescribers of each antipsychotic medication prescription issued for a Medicaid-insured child in Vermont aged <18 years were sent a prior authorization survey that assessed several domains including the clinical indication, other treatments, metabolic monitoring, prescriber specialty, and prescription origin. These variables were combined to categorize prescriptions as following indications approved by the US Food and Drug Administration (FDA) and best practice guidelines. RESULTS: The response rate of the survey was 80%, with 677 surveys from 147 prescribers available for analysis; more than one-half of the respondents were primary care clinicians. Overall, the clinical indication for an antipsychotic prescription followed best practice guidelines 91.7% of the time, with overall best practice guidelines followed at a rate of 50.1%. An FDA indication was followed in 27.2% of cases. Psychiatrists were significantly more likely to follow best practice guidelines than nonpsychiatrists. Antipsychotic medications were typically used only after other pharmacologic and nonpharmacologic treatments were ineffective, although previous treatment with cognitive-behavioral therapy was uncommon (15.5%). Metabolic monitoring that included serial laboratory tests was reported in 57.2% of cases. CONCLUSIONS: Current prescribing patterns of antipsychotic medications for children and adolescents follow best practice guidelines approximately one-half of the time, with nonadherence often related to lack of metabolic monitoring.

High-fat diets and seizure control in myoclonic-astatic epilepsy: a single center's experience.

PURPOSE: To determine the efficacy of the Modified Atkins Diet (MAD) and Ketogenic Diet (KD) in seizure control within a population of myoclonic-astatic epilepsy (MAE) patients. METHODS: This was a retrospective, single center study evaluating the seizure control by high fat diets. Seizure diaries kept by the parents performed seizure counts. All patients met the clinical criteria for MAE. RESULTS: Nine patients met the clinical criteria. We found that both the MAD and KD were efficacious in complete seizure control and allowed other medications to be stopped in seven patients. Two patients had greater than 90% seizure control without medications, one on the KD and the other on the MAD. Seizure freedom has ranged from 13 to 36 months, and during this time four patients have been fully weaned off of diet management. One patient was found to have a mutation in SLC2A1. CONCLUSION: Our results suggest that strictly defined MAE patients respond to the MAD with prolonged seizure control. Some patients may require the KD for seizure freedom, suggesting a common pathway of increased requirement for fats. Once controlled, those fully responsive to the Diet(s) could be weaned off traditional seizure medications and in many, subsequently off the MAD or KD.