Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.

Operationalizing the role of the nurse ethicist: More than a job.

The idea of a role in nursing that includes expertise in ethics has been around for more than 30 years. Whether or not one subscribes to the idea that nursing ethics is separate and distinct from bioethics, nursing practice has much to contribute to the ethical practice of healthcare, and with the strong grounding in ethics and aspiration for social justice considerations in nursing, there is no wonder that the specific role of the nurse ethicist has emerged. Nurse ethicists, expert in nursing practice and the application of ethical theories and concepts, are well positioned to guide nurses through complex ethical challenges. However, there is limited discussion within the field regarding the specific job responsibilities that the nurse ethicist ought to have. The recent appearance of job postings with the title "nurse ethicist" suggest that some healthcare institutions have identified the value of a nurse in the practice of ethics and are actively recruiting. Discomfort about the possibility of others defining the role of the nurse ethicist inspired this paper (and special issue). If the nurse ethicist is to be seen as an integral part of addressing ethical dilemmas and ethical conflicts that arise in healthcare, then nurse ethicists ought to be at the forefront of defining this role. In this paper, we draw upon our own experiences as nurse ethicists in large academic healthcare systems to describe the essential elements that ought to be addressed in a job description for a nurse ethicist practicing in a clinical setting linked to academic programs. Drawing upon our experience and the literature, we describe how we perceive the nurse ethicist adds value to healthcare organizations and teams of professional ethicists.

Professional responsibility, nurses, and conscientious objection: A framework for ethical evaluation.

Conscientious objections (CO) can be disruptive in a variety of ways and may disadvantage patients and colleagues who must step-in to assume care. Nevertheless, nurses have a right and responsibility to object to participation in interventions that would seriously harm their sense of integrity. This is an ethical problem of balancing risks and responsibilities related to patient care. Here we explore the problem and propose a nonlinear framework for exploring the authenticity of a claim of CO from the perspective of the nurse and of those who must evaluate such claims. We synthesized the framework using Rest's Four Component Model of moral reasoning along with tenets of the International Council of Nursing's (ICN) Code of Ethics for Nurses and insights from relevant ethics and nursing ethics literature. The resulting framework facilitates evaluating potential consequences of a given CO for all involved. We propose that the framework can also serve as an aid for nurse educators as they prepare students for practice. Gaining clarity about the sense in which the concept of conscience provides a defensible foundation for objecting to legally, or otherwise ethically, permissible actions, in any given case is critical to arriving at an ethical and reasonable plan of action.

Evaluation of Interventions to Address Moral Distress: A Multi-method Approach.

Moral distress is a well-documented phenomenon for health care providers (HCPs). Exploring HCPs' perceptions of participation in moral distress interventions using qualitative and quantitative methods enhances understanding of intervention effectiveness. The purpose of this study was to measure and describe the impact of a two-phased intervention on participants' moral distress. Using a cross-over design, the project aimed to determine if the intervention would decrease moral distress, enhance moral agency, and improve perceptions about the work environment. We used quantitative instruments and explored participants' perceptions of the intervention using semi-structured interviews. Participants were from inpatient settings, within three major hospitals of a large, urban healthcare system in the Midwest, United States. Participants included nurses (80.6%) and other clinical care providers. Using generalized linear mixed modeling we assessed the change in each of the outcome variables over time controlling for groups. Interviews were audiotaped and professionally transcribed. The written narratives were coded into themes. The change in scores on study instruments trended in the desired direction however did not meet statistical significance. Qualitative interviews revealed that intervention effectiveness was derived from a combination of learning benefits, psychological benefits, and building community that promoted moral agency. Findings demonstrate a clear link between moral distress and moral agency and suggest that Facilitated Ethics Conversations can enhance the work environment. Findings provide insight for developing evidenced-based approaches to address moral distress of hospital nurses.

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

Mitigating ethical conflict and moral distress in the care of patients on ECMO: impact of an automatic ethics consultation protocol.

AIMS: This study evaluates a protocol for early, routine ethics consultation (EC) for patients on extracorporeal membrane oxygenation (ECMO) to support decision-making in the context of clinical uncertainty with the aim of mitigating ethical conflict and moral distress. METHODS: We conducted a single-site qualitative analysis of EC documentation for all patients receiving ECMO support from 15 August 2018 to 15 May 2019 (n=68). Detailed analysis of 20 ethically complex cases with protracted ethics involvement identifies four key ethical domains: limits of prognostication, bridge to nowhere, burden of treatment and system-level concerns. There are three subthemes: relevant contextual factors, the role of EC and observed outcomes. Content analysis of transcripts from interviews with 20 members of the multidisciplinary ECMO team yields supplemental data on providers' perceptions of the impact of the early intervention protocol. RESULTS: Limited outcome data for ECMO, unclear indications for withdrawal, adverse effects of treatment and an obligation to attend to programme metrics present significant ethical challenges in the care of this patient population. Upstream EC mitigates ethical conflict by setting clear expectations about ECMO as a time limited trial, promoting consistent messaging among multiple services and supporting surrogate decision-makers. When ECMO becomes a 'bridge to nowhere', EC facilitates decision-making that respects patient values yet successfully sets limits on non-beneficial use of this novel therapy. CONCLUSION: Data from this study support the conclusion that ECMO poses unique ethical challenges that necessitate a standardised protocol for early, routine EC-at least while this medical technology is in its nascent stages.

American Academy of Nursing Expert Panel consensus statement on nursing's roles in ensuring universal palliative care access.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. Part I of this consensus paper herein provides the rationale and background to support the policy, education, research, and clinical practice recommendations put forward in Part II. On behalf of the Academy, the evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter. The authors recommend greater investments in palliative nursing education and nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative nurses worldwide. By enacting these recommendations, nurses working in all settings can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations.

Factors Associated with Physician Moral Distress Caring for Hospitalized Elderly Patients Needing a Surrogate Decision-maker: a Prospective Study.

BACKGROUND: When working with surrogate decision-makers, physicians often encounter ethical challenges that may cause moral distress which can have negative consequences for physicians. OBJECTIVE: To determine frequency of and factors associated with physicians' moral distress caring for patients requiring a surrogate. DESIGN: Prospective survey. PARTICIPANTS: Physicians (n = 154) caring for patients aged 65 years and older and their surrogate decision-makers (n = 362 patient/surrogate dyads). Patients were admitted to medicine or medical intensive care services, lacked decisional capacity and had an identified surrogate. MAIN MEASURES: Moral distress thermometer. KEY RESULTS: Physicians experienced moral distress in the care of 152 of 362 patients (42.0%). In analyses adjusted for physician, patient, and surrogate characteristics, physician/surrogate discordance in preferences for the plan of care was not significantly associated with moral distress. Physicians were more likely to experience moral distress when caring for older patients (1.06, 1.02-1.10), and facing a decision about life-sustaining treatment (3.58, 1.54-8.32). Physicians were less likely to experience moral distress when caring for patients residing in a nursing home (0.40, 0.23-0.69), patients who previously discussed care preferences (0.56, 0.35-0.90), and higher surrogate ratings of emotional support from clinicians (0.94, 0.89-0.99). Physicians' internal discordance when they prefer a more comfort-focused plan than the patient is receiving was associated with significantly higher moral distress (2.22, 1.33-3.70) after adjusting for patient, surrogate, and physician characteristics. CONCLUSIONS: Physician moral distress occurs more frequently when the physician is male, the patient is older or requires decisions about life-sustaining treatments. These findings may help target interventions to support physicians. Prior discussions about patient wishes is associated with lower distress and may be a target for patient-centered interventions.

Development and Retrospective Review of a Pediatric Ethics Consultation Service at a Large Academic Center.

The primary objective was to review pediatric ethics consultations (PECs) at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach.

Communication Quality Predicts Psychological Well-Being and Satisfaction in Family Surrogates of Hospitalized Older Adults: An Observational Study.

BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization. OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults. DESIGN: Observational study at three hospitals in a Midwest metropolitan area. PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study. MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems). KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate-severe anxiety); 29% reported depression, (14.0% moderate-severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001). CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.

Futility Disputes: A Review of the Literature and Proposed Model for Dispute Navigation Through Trust Building.

Futility disputes in the intensive care unit setting have received significant attention in the literature over the past several years. Although the idea of improving communication in an attempt to resolve these challenging situations has been regularly discussed, the concept and role of trust building as the means by which communication improves and disputes are best navigated is largely absent. We take this opportunity to review the current literature on futility disputes and argue the important role of broken trust in these encounters, highlighting current evidence establishing the necessity and utility of trust in both medical decision-making and effective communication. Finally, we propose a futility dispute navigation model built upon improved communication through trust building.

A code of ethics for health care ethics consultants: journey to the present and implications for the field.

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, the American Society for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here.

Image is more than a uniform: the promise of assurance.

OBJECTIVE: The purpose of this qualitative study was to explore the meaning of the phrase "image of the nurse" in the context of the desired brand experience of assurance. BACKGROUND: A brand is a promise that lives in the minds of consumers. Nurses play a key role in delivering on the brand promise of a hospital. METHODS: Using focus groups, the authors applied a deductive approach to generate data. Discussion transcripts were analyzed by establishing codes and identifying themes. RESULTS: The most frequent comment from participants was that for nurses to communicate assurance, they must 1st be clean, well groomed, and understated in overall appearance. Nurse behaviors that reassure patients include being present with patients, helping patients know what to expect, and demonstrating a consistent team approach. CONCLUSIONS: Overall appearance and behaviors define the image of nurses and contribute significantly to the brand of assurance.

Transforming the image of nursing: the evidence for assurance.

A nurse's uniform influences perceptions about nursing practice and thus contributes significantly to the overall image of a nurse. A nurse's uniform also can represent the brand of an organization, the tangible and intangible attributes that distinguish an organization from its competitors. The rebranding of a major health care system provided a unique opportunity to refine the "image of nurses" within the organization. This article describes the planning, evidence gathering, and implementation of a major initiative to promote professional nursing practice.

Embedding Nursing Ethics Within Teaching Strategies in Nurse Residency Programs.

Exposing new nurses to theoretical teaching strategies that help them to navigate the ethical challenges in clinical practice is essential for retention and long-term job satisfaction. This article explores the rationale for teaching ethics content in nurse residency programs and ways to navigate ethical decision-making in the clinical setting. Examples of evidence-informed teaching strategies that enhance knowledge retention and reduce the gap between ethical theory and practice are included.