Jennifer B. Seaman

Hospice and Family Involvement With End-of-Life Care: Results From a Population-Based Survey.

Utilization and perceived benefits of hospice may vary across populations. In a population-based survey, we examined the prevalence of hospice utilization, caregiver sociodemographic characteristics, and quality and complexity of end-of-life (EOL) care, as reported by community caregivers to people who died in the prior year. The 2009 to 2010 Allegheny County, PA Behavioral Risk Factor Surveillance System Health Survey, a population-based telephone survey of 5442 adult residents, included an 8-item EOL caregiver module. Overall, 7.8% (95% confidence interval = 7.0-8.6) of respondents reported having arranged or provided care for a close friend/family member who died in the previous 12 months. Caregivers of decedents who utilized hospice reported positive quality outcomes and greater involvement in care. Utilization of hospice services was associated with beneficial outcomes at EOL, but with increased involvement of EOL caregivers.

Psychometric Properties of a Decisional Capacity Screening Tool for Individuals Contemplating Participation in Alzheimer's Disease Research

BACKGROUND With the growing population of individuals affected by Alzheimers disease (AD) and related disorders, there is a pressing demand for research on late-life cognitive disorders. However, this populations high risk for decisional incapacity necessitates evaluation of capacity to consent to research participation, adding cost and complexity to the research process. The University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) was initially validated in a sample of persons with schizophrenia and healthy controls. OBJECTIVE To assess the psychometric properties of the UBACC when used in a sample of individuals contemplating participation in AD research. METHODS The UBACC was administered to a convenience sample (n = 132) consisting of individuals with mild to moderate cognitive impairment (n = 52), their study partners (n = 52), and healthy older adults control subjects (n = 30), as part of a broader study to evaluate perceived burden of research participation. Reliability tests, correlational analyses, and exploratory factor analytic methods were used to examine the psychometric properties of the instrument. RESULTS UBACC scores were significantly associated with both global cognition (rs= 0.564, p <  0.001) and verbal fluency (rs = 0.511, p <  0.001), indicating concurrent validity with related constructs. The resulting factor structure differed from that reported by the developers in their initial testing. Items clustered almost entirely on one factor; items reflecting the construct of understanding accounted for 32.12% of total variance, with no evidence for distinct reasoning or appreciation scales. CONCLUSION The UBACC shows promise when used to screen for decisional capacity among those considering participation in AD research.

Improving Care at End of Life in the ICU: A Proposal for Early Discussion of Goals of Care

Improving care at end of life (EOL) in the intensive care unit (ICU) remains a challenge, especially for older adults, who face a high likelihood of mortality or profound functional impairment with admission to the ICU and use of life-sustaining treatment (LST) such as mechanical ventilation. Multiple factors pose a barrier to high-quality EOL care that is consistent with patient preferences and values. This article outlines key contributory factors to this problem and offers, as a solution, a proposal for earlier engagement with decisional surrogates to clearly define the surrogate role; outline the risks, benefits, and alternatives to LSTs in use; and clarify patient-specific goals of care. Nurses should play a pivotal role in the development of programs to implement early discussion of goals of care, and they are instrumental in identifying patients at risk and facilitating early engagement with surrogates in facilities where such programs exist. Research that systematically evaluates outcomes of such protocols is needed to guide policy for patient-centered EOL care in the ICU.

Patterns of palliative care service consultation in a sample of critically ill ICU patients at high risk of dying

Objective Describe patterns of palliative care service consultation among a sample of ICU patients at high risk of dying. Background Patients receiving mechanical ventilation (MV) face threats to comfort, social connectedness and dignity due to pain, heavy sedation and physical restraint. Palliative care consultation services may mitigate poor outcomes. Methods From a dataset of 1440 ICU patients with ≥2 days of MV and ≥12 h of sustained wakefulness, we identified those at high risk of dying and/or who died and assessed patterns of sub‐specialty palliative care consultation. Results About half (773/1440 [54%]) were at high risk of dying or died, 73 (9.4%) of whom received palliative care consultation. On average, referral occurred after 62% of the ICU stay had elapsed. Primary reason for consult was clarification of goals of care (52/73 [72.2%]). Conclusions Among MV ICU patients at high risk of dying, palliative care service consultation occurs late and infrequently, suggesting a role for earlier palliative care. HighlightsWe described patterns of palliative care consultation among critically ill ICU patients who were at high risk of dying and/or who died.Subspecialty palliative care consultations were late and infrequent.The majority of consultations were made for clarification of goals of care.New paradigms are needed to deliver timely palliative care to more patients.

Overcoming barriers to pain assessment: communicating pain information with intubated older adults.

Case Study Mrs. Jones is a 67-year-old woman admitted to the intensive care unit (ICU) with complications following head and neck cancer surgery. She is mechanically ventilated via tracheotomy tube and was heavily sedated postoperatively for severe agitation. Because Mrs. Jones was unable to respond to queries about pain, the ICU nurses used a behavioral pain scale specifically geared to mechanically ventilated (MV) patients that incorporated ventilator synchrony and behavioral pain indicators in place of breathing and vocalization. This morning, Mrs. Jones is calm and alert, squeezing the doctor’s hand for the first time in response to a question. Her nurse consults the speech language pathologist (SLP) for assistance in assessing and planning communication with Mrs. Jones. The nurse is particularly interested in accurately assessing and managing Mrs. Jones’s pain to disrupt the painagitation-sedation cycle. The SLP finds that Mrs. Jones is awake and oriented to person only. She is able to nod “yes” and “no” slightly and consistently. Mrs. Jones is extremely weak but can follow commands to wiggle her fingers, blink her eyes twice, and look at pictures on a communication board. Her hands are tremulous, and her arms are weak. She is unable to point to a picture, gesture effectively, or hold a pen to write. Mrs. Jones indicates that she is in pain by nodding “yes” in response to a direct question. The SLP and nurse use these communication assessment findings to obtain information about the location and intensity of her pain Using the assisted pointing technique (the nurse systematically points to areas on a drawing of a body), Mrs. Jones endorses pain in her head, neck, and chest, but denies pain in her arms, legs, and back. Mrs. Jones watches intently as the nurse points to each level on the Faces Pain ScaledRevised finally indicating a pain level of 10/10 by nodding “yes.”

Abstracting ICU Nursing Care Quality Data From the Electronic Health Record

The electronic health record is a potentially rich source of data for clinical research in the intensive care unit setting. We describe the iterative, multi-step process used to develop and test a data abstraction tool, used for collection of nursing care quality indicators from the electronic health record, for a pragmatic trial. We computed Cohen’s kappa coefficient (κ) to assess interrater agreement or reliability of data abstracted using preliminary and finalized tools. In assessing the reliability of study data (n = 1,440 cases) using the finalized tool, 108 randomly selected cases (10% of first half sample; 5% of last half sample) were independently abstracted by a second rater. We demonstrated mean κ values ranging from 0.61 to 0.99 for all indicators. Nursing care quality data can be accurately and reliably abstracted from the electronic health records of intensive care unit patients using a well-developed data collection tool and detailed training.

Prevalence of Advance Directives Among Older Adults Admitted to Intensive Care Units and Requiring Mechanical Ventilation.

Because older adults are at high risk for hospitalization and potential decisional incapacity, advance directives are important components of pre-hospital advanced care planning, as they document individual preferences for future medical care. The prevalence of pre-hospital advance directive completion in 450 critically ill older adults requiring mechanical ventilation from two Mid-Atlantic hospitals is described, and demographic and clinical predictors of pre-hospital advance directive completion are explored. The overall advance directive completion rate was 42.4%, with those in older age groups (75 to 84 years and 85 and older) having approximately two times the odds of completion. No significant differences in the likelihood of advance directive completion were noted by sex, race, or admitting diagnosis. The relatively low prevalence of advance directive completion among older adults with critical illness and high mortality rate (24%) suggest a need for greater awareness and education.

Workarounds in the Workplace: A Second Look.

Nursing workarounds have garnered increased attention over the past 15 years, corresponding with an increased focus on patient safety and evidence-based practice and a rise in the use of health information technologies (HITs). Workarounds have typically been viewed as deviations from best practice that put patients at risk for poor outcomes. However, this narrow view fails to take into consideration the multifactorial origins of workarounds. The authors explore the ways in which evidence-based protocols and HIT, designed to improve patient safety and quality, can have an unintended consequence of increasing the likelihood of nurses engaging in workarounds. The article also examines workarounds considering the ethical obligations of both nurses and administrative leaders to optimize patient safety and quality.

False Positives, Outliers, and Other Considerations in Decisional Capacity Screening for Research Consent.

Dear Reviewers, We would like to thank Dr. Rosen and Dr. Weitlauf for their thoughtful commentary on our paper and their timely insights about the importance of assessing capacity to provide informed consent to research participation among potential participants who may have variable levels of decisional capacity. In response to concerns about false positive results among study partners, we would like to emphasize that our study did not include administration of an established measure of capacity to consent (such as the MacArthur Competence Assessment Tool – Clinical Research [MacCAT-CR]) [1]. Hence, we were unable to determine whether these individuals were indeed decisionally intact (truly false positive) or whether the tool was detecting an as yet unidentified question of decisional capacity in these study partners. Interestingly, Jeste et al. reported a significant number of false positives when cross validating the University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) with the MacCAT-CR using a cut score established in the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) study data [2].

Everyday ethics in the care of hospitalized older adults.

As the U.S. population ages, the proportion of hospitalized patients older than 65 years will continue to increase with a significant number likely to have some degree of cognitive impairment. Because of the high rate of falls-related traumatic injury among older adults, many will require orthopaedic services. These patients may have multiple comorbidities and are at increased risk for complications. Varying degrees of cognitive impairment in combination with possible postoperative complications including delirium places these patients at risk for decreased decisional capacity and can create ethical dilemmas during the provision of bedside care. This article explores some everyday ethical dilemmas that nurses face in their care of hospitalized older adults, and offers nurses strategies to preserve patient dignity and self-determination while providing high-quality, evidence-based nursing care.