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.

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.

A systems approach to enable effective team science from the internal research program of the National Center for Advancing Translational Sciences.

The internal research program of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health aims to fundamentally transform the preclinical translational research process to get more treatments to more people more quickly. The program develops and implements innovative scientific and operational approaches that accelerate and enhance translation across many diverse projects. Cross-disciplinary team science is a defining feature of our organization, with scientists at all levels engaged in multiple research teams. Here, we share our systems approach to nurturing cross-disciplinary team science, which leverages organizational policies, structures, and processes. Policies including the organizational mission statement, principles for ethical conduct of research, performance review criteria, and training program objectives and approaches reinforce the value of team science to achieve the program's scientific goals. Structures including an organizational structure designed around solving translational problems, co-location of employees in a single state-of-the-art scientific facility, and shared-use laboratories, expertise and instrumentation facilitate collaboration. Processes including fluid team assembly, specialized project management, cross-agency partnerships, and decision making based on clear screening criteria and milestones enable effective team assembly and functioning. We share evidence of the impact of these approaches on the science and commercialization of findings and discuss pathways to broad adoption of similar approaches.

Informing the gestalt: an ethical framework for allocating scarce federal public health and medical resources to states during disasters.

During catastrophic disasters, government leaders must decide how to efficiently and effectively allocate scarce public health and medical resources. The literature about triage decision making at the individual patient level is substantial, and the National Response Framework provides guidance about the distribution of responsibilities between federal and state governments. However, little has been written about the decision-making process of federal leaders in disaster situations when resources are not sufficient to meet the needs of several states simultaneously. We offer an ethical framework and logic model for decision making in such circumstances. We adapted medical triage and the federalism principle to the decision-making process for allocating scarce federal public health and medical resources. We believe that the logic model provides a values-based framework that can inform the gestalt during the iterative decision process used by federal leaders as they allocate scarce resources to states during catastrophic disasters.

Systematic review of strategies to manage and allocate scarce resources during mass casualty events.

STUDY OBJECTIVE: Efficient management and allocation of scarce medical resources can improve outcomes for victims of mass casualty events. However, the effectiveness of specific strategies has never been systematically reviewed. We analyze published evidence on strategies to optimize the management and allocation of scarce resources across a wide range of mass casualty event contexts and study designs. METHODS: Our literature search included MEDLINE, Scopus, EMBASE, Cumulative Index to Nursing and Allied Health Literature, Global Health, Web of Science, and the Cochrane Database of Systematic Reviews, from 1990 through late 2011. We also searched the gray literature, using the New York Academy of Medicine's Grey Literature Report and key Web sites. We included both English- and foreign-language articles. We included studies that evaluated strategies used in actual mass casualty events or tested through drills, exercises, or computer simulations. We excluded studies that lacked a comparison group or did not report quantitative outcomes. Data extraction, quality assessment, and strength of evidence ratings were conducted by a single researcher and reviewed by a second; discrepancies were reconciled by the 2 reviewers. Because of heterogeneity in outcome measures, we qualitatively synthesized findings within categories of strategies. RESULTS: From 5,716 potentially relevant citations, 74 studies met inclusion criteria. Strategies included reducing demand for health care services (18 studies), optimizing use of existing resources (50), augmenting existing resources (5), implementing crisis standards of care (5), and multiple categories (4). The evidence was sufficient to form conclusions on 2 strategies, although the strength of evidence was rated as low. First, as a strategy to reduce demand for health care services, points of dispensing can be used to efficiently distribute biological countermeasures after a bioterrorism attack or influenza pandemic, and their organization influences speed of distribution. Second, as a strategy to optimize use of existing resources, commonly used field triage systems do not perform consistently during actual mass casualty events. The number of high-quality studies addressing other strategies was insufficient to support conclusions about their effectiveness because of differences in study context, comparison groups, and outcome measures. Our literature search may have missed key resource management and allocation strategies because of their extreme heterogeneity. Interrater reliability was not assessed for quality assessments or strength of evidence ratings. Publication bias is likely, given the large number of studies reporting positive findings. CONCLUSION: The current evidence base is inadequate to inform providers and policymakers about the most effective strategies for managing or allocating scarce resources during mass casualty events. Consensus on methodological standards that encompass a range of study designs is needed to guide future research and strengthen the evidence base. Evidentiary standards should be developed to promote consensus interpretations of the evidence supporting individual strategies.

A blueprint for genomic nursing science.

PURPOSE: This article reports on recommendations arising from an invitational workshop series held at the National Institutes of Health for the purposes of identifying critical genomics problems important to the health of the public that can be addressed through nursing science. The overall purpose of the Genomic Nursing State of the Science Initiative is to establish a nursing research blueprint based on gaps in the evidence and expert evaluation of the current state of the science and through public comment. ORGANIZING CONSTRUCTS: A Genomic Nursing State of the Science Advisory Panel was convened in 2012 to develop the nursing research blueprint. The Advisory Panel, which met via two webinars and two in-person meetings, considered existing evidence from evidence reviews, testimony from key stakeholder groups, presentations from experts in research synthesis, and public comment. FINDINGS: The genomic nursing science blueprint arising from the Genomic Nursing State of Science Advisory Panel focuses on biologic plausibility studies as well as interventions likely to improve a variety of outcomes (e.g., clinical, economic, environmental). It also includes all care settings and diverse populations. The focus is on (a) the client, defined as person, family, community, or population; (b) the context, targeting informatics support systems, capacity building, education, and environmental influences; and (c) cross-cutting themes. It was agreed that building capacity to measure the impact of nursing actions on costs, quality, and outcomes of patient care is a strategic and scientific priority if findings are to be synthesized and aggregated to inform practice and policy. CONCLUSIONS: The genomic nursing science blueprint provides the framework for furthering genomic nursing science to improve health outcomes. This blueprint is an independent recommendation of the Advisory Panel with input from the public and is not a policy statement of the National Institutes of Health or the federal government. CLINICAL RELEVANCE: This genomic nursing science blueprint targets research to build the evidence base to inform integration of genomics into nursing practice and regulation (such as nursing licensure requirements, institutional accreditation, and academic nursing school accreditation).

User-managed inventory: an approach to forward-deployment of urgently needed medical countermeasures for mass-casualty and terrorism incidents.

The user-managed inventory (UMI) is an emerging idea for enhancing the current distribution and maintenance system for emergency medical countermeasures (MCMs). It increases current capabilities for the dispensing and distribution of MCMs and enhances local/regional preparedness and resilience. In the UMI, critical MCMs, especially those in routine medical use ("dual utility") and those that must be administered soon after an incident before outside supplies can arrive, are stored at multiple medical facilities (including medical supply or distribution networks) across the United States. The medical facilities store a sufficient cache to meet part of the surge needs but not so much that the resources expire before they would be used in the normal course of business. In an emergency, these extra supplies can be used locally to treat casualties, including evacuees from incidents in other localities. This system, which is at the interface of local/regional and federal response, provides response capacity before the arrival of supplies from the Strategic National Stockpile (SNS) and thus enhances the local/regional medical responders' ability to provide life-saving MCMs that otherwise would be delayed. The UMI can be more cost-effective than stockpiling by avoiding costs due to drug expiration, disposal of expired stockpiled supplies, and repurchase for replacement.

Nursing leadership in disaster preparedness and response.

Nurses serve as leaders in disaster preparedness and response at multiple levels: within their own homes and neighborhoods, at disaster scenes, and the workplace, which can vary from a health care facility, in the community, or at the state, national, or international level. This chapter provides an overview on theories of leadership with a historical context for nursing leadership; setting the context for nursing leadership in disaster preparedness and response. Although few research studies exist, there are numerous examples of nurses who provide leadership for disaster preparedness and response. To define the current state of the science, the research studies cited in this chapter are supplemented with case studies from particular disasters. The major finding of this review is that nursing leadership in disaster preparedness and response is a field of study that needs to be developed.

Triage and treatment tools for use in a scarce resources-crisis standards of care setting after a nuclear detonation.

Based on background information in this special issue of the journal, possible triage recommendations for the first 4 days following a nuclear detonation, when response resources will be limited, are provided. The series includes: modeling for physical infrastructure damage; severity and number of injuries; expected outcome of triage to immediate, delayed, or expectant management; resources required for treating injuries of varying severity; and how resource scarcity (particularly medical personnel) worsens outcome. Four key underlying considerations are: 1.) resource adequacy will vary greatly across the response areas by time and location; 2.) to achieve fairness in resource allocation, a common triage approach is important; 3.) at some times and locations, it will be necessary to change from "conventional" to "contingency" or "crisis" standards of medical care (with a resulting change in triage approach from treating the "sickest first" to treating those "most likely to survive" first); and 4.) clinical reassessment and repeat triage are critical, as resource scarcity worsens or improves. Changing triage order and conserving and allocating resources for both lifesaving and palliative care can maintain fairness, support symptomatic care, and save more lives. Included in this article are printable triage cards that reflect our recommendations. These are not formal guidelines. With new research, data, and discussion, these recommendations will undoubtedly evolve.

Allocation of scarce resources after a nuclear detonation: setting the context.

The purpose of this article is to set the context for this special issue of Disaster Medicine and Public Health Preparedness on the allocation of scarce resources in an improvised nuclear device incident. A nuclear detonation occurs when a sufficient amount of fissile material is brought suddenly together to reach critical mass and cause an explosion. Although the chance of a nuclear detonation is thought to be small, the consequences are potentially catastrophic, so planning for an effective medical response is necessary, albeit complex. A substantial nuclear detonation will result in physical effects and a great number of casualties that will require an organized medical response to save lives. With this type of incident, the demand for resources to treat casualties will far exceed what is available. To meet the goal of providing medical care (including symptomatic/palliative care) with fairness as the underlying ethical principle, planning for allocation of scarce resources among all involved sectors needs to be integrated and practiced. With thoughtful and realistic planning, the medical response in the chaotic environment may be made more effective and efficient for both victims and medical responders.

Resource allocation after a nuclear detonation incident: unaltered standards of ethical decision making.

This article provides practical ethical guidance for clinicians making decisions after a nuclear detonation, in advance of the full establishment of a coordinated response. We argue that the utilitarian maxim of the greatest good for the greatest number, interpreted only as "the most lives saved," needs refinement. We take the philosophical position that utilitarian efficiency should be tempered by the principle of fairness in making decisions about providing lifesaving interventions and palliation. The most practical way to achieve these goals is to mirror the ethical precepts of routine clinical practice, in which 3 factors govern resource allocation: order of presentation, patient's medical need, and effectiveness of an intervention. Although these basic ethical standards do not change, priority is given in a crisis to those at highest need in whom interventions are expected to be effective. If available resources will not be effective in meeting the need, then it is unfair to expend them and they should be allocated to another patient with high need and greater expectation for survival if treated. As shortage becomes critical, thresholds for intervention become more stringent. Although the focus of providers will be on the victims of the event, the needs of patients already receiving care before the detonation also must be considered. Those not allocated intervention must still be provided as much appropriate comfort, assistance, relief of symptoms, and explanations as possible, given the available resources. Reassessment of patients' clinical status and priority for intervention also should be conducted with regularity.

Health care system planning for and response to a nuclear detonation.

The hallmark of a successful response to a nuclear detonation will be the resilience of the community, region, and nation. An incident of this magnitude will rapidly become a national incident; however, the initial critical steps to reduce lives lost, save the lives that can be saved with the resources available, and understand and apply resources available to a complex and dynamic situation will be the responsibility of the local and regional responders and planners. Expectations of the public health and health care systems will be met to the extent possible by coordination, cooperation, and an effort to produce as consistent a response as possible for the victims. Responders will face extraordinarily stressful situations, and their own physical and psychological health is of great importance to optimizing the response. This article illustrates through vignettes and supporting text how the incident may unfold for the various components of the health and medical systems and provides additional context for the discipline-related actions outlined in the state and local planners' playbook.

Medical response to a nuclear detonation: creating a playbook for state and local planners and responders.

For efficient and effective medical responses to mass casualty events, detailed advanced planning is required. For federal responders, this is an ongoing responsibility. The US Department of Health and Human Services (DHHS) prepares playbooks with formal, written plans that are reviewed, updated, and exercised regularly. Recognizing that state and local responders with fewer resources may be helped in creating their own event-specific response plans, subject matter experts from the range of sectors comprising the Scarce Resources for a Nuclear Detonation Project, provided for this first time a state and local planner's playbook template for responding to a nuclear detonation. The playbook elements are adapted from DHHS playbooks with appropriate modification for state and local planners. Individualization by venue is expected, reflecting specific assets, populations, geography, preferences, and expertise. This playbook template is designed to be a practical tool with sufficient background information and options for step-by-step individualized planning and response.

Ground Zero recollections of US Public Health Service nurses deployed to New York City in September 2001.

The events of September 11, 2001, set in motion the broadest emergency response ever conducted by the US Department of Health and Human Services. In this article, some of the nurses who deployed to New York City in the aftermath of that horrific attack on the United States offer their recollections of the events. Although Public Health Service Commissioned Corps (PHS CC) officers participated in deployments before 9/11, this particular deployment accelerated the transformation of the PHS CC, because people came to realize the tremendous potential of a uniformed service of 6,000 health care professionals. When not responding to emergencies, PHS CC nurses daily serve the mission of the PHS to protect, promote, and advance the health and safety of the nation. In times of crisis, the PHS CC nurses stand ready to deploy in support of those in need of medical assistance.

The "RTR" medical response system for nuclear and radiological mass-casualty incidents: a functional TRiage-TReatment-TRansport medical response model.

Developing a mass-casualty medical response to the detonation of an improvised nuclear device (IND) or large radiological dispersal device (RDD) requires unique advanced planning due to the potential magnitude of the event, lack of warning, and radiation hazards. In order for medical care and resources to be collocated and matched to the requirements, a [US] Federal interagency medical response-planning group has developed a conceptual approach for responding to such nuclear and radiological incidents. The "RTR" system (comprising Radiation-specific TRiage, TReatment, TRansport sites) is designed to support medical care following a nuclear incident. Its purpose is to characterize, organize, and efficiently deploy appropriate materiel and personnel assets as close as physically possible to various categories of victims while preserving the safety of responders. The RTR system is not a medical triage system for individual patients. After an incident is characterized and safe perimeters are established, RTR sites should be determined in real-time that are based on the extent of destruction, environmental factors, residual radiation, available infrastructure, and transportation routes. Such RTR sites are divided into three types depending on their physical/situational relationship to the incident. The RTR1 sites are near the epicenter with residual radiation and include victims with blast injuries and other major traumatic injuries including radiation exposure; RTR2 sites are situated in relationship to the plume with varying amounts of residual radiation present, with most victims being ambulatory; and RTR3 sites are collection and transport sites with minimal or no radiation present or exposure risk and a victim population with a potential variety of injuries or radiation exposures. Medical Care sites are predetermined sites at which definitive medical care is given to those in immediate need of care. They include local/regional hospitals, medical centers, other sites such as nursing homes and outpatient clinics, nationwide expert medical centers (such as cancer or burn centers), and possible alternate care facilities such as Federal Medical Stations. Assembly Centers for displaced or evacuating persons are predetermined and spontaneous sites safely outside of the perimeter of the incident, for use by those who need no immediate medical attention or only minor assistance. Decontamination requirements are important considerations for all RTR, Medical Care, and Assembly Center sites and transport vehicles. The US Department of Health and Human Services is working on a long-term project to generate a database for potential medical care sites and assembly centers so that information is immediately available should an incident occur.

End-of-life issues in genetic disorders: literature and research directions.

Part I of this report summarizes findings from a literature search on end of life in people with genetic disorders. There is a paucity of research on this topic; thus this article includes descriptive studies, clinical reviews, and case presentations. Part II describes the proceedings of a workshop to discuss end-of-life issues in people with genetic disorders. The workshop brought together clinicians, researchers, and people living with genetic disorders to discuss this topic. The purpose of this article is to summarize the literature and workshop proceedings to provide directions for future investigation in this important area.