Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

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.

Operational Recommendations for Scarce Resource Allocation in a Public Health Crisis.

The coronavirus disease 2019 pandemic may require rationing of various medical resources if demand exceeds supply. Theoretical frameworks for resource allocation have provided much needed ethical guidance, but hospitals still need to address objective practicalities and legal vetting to operationalize scarce resource allocation schemata. To develop operational scarce resource allocation processes for public health catastrophes, including the coronavirus disease 2019 pandemic, five health systems in Maryland formed a consortium-with diverse expertise and representation-representing more than half of all hospitals in the state. Our efforts built on a prior statewide community engagement process that determined the values and moral reference points of citizens and health-care professionals regarding the allocation of ventilators during a public health catastrophe. Through a partnership of health systems, we developed a scarce resource allocation framework informed by citizens' values and by general expert consensus. Allocation schema for mechanical ventilators, ICU resources, blood components, novel therapeutics, extracorporeal membrane oxygenation, and renal replacement therapies were developed. Creating operational algorithms for each resource posed unique challenges; each resource's varying nature and underlying data on benefit prevented any single algorithm from being universally applicable. The development of scarce resource allocation processes must be iterative, legally vetted, and tested. We offer our processes to assist other regions that may be faced with the challenge of rationing health-care resources during public health catastrophes.

Social, financial and psychological stress during an emerging pandemic: observations from a population survey in the acute phase of COVID-19.

INTRODUCTION: The negative impacts of COVID-19 have rippled through every facet of society. Understanding the multidimensional impacts of this pandemic is crucial to identify the most critical needs and to inform targeted interventions. This population survey study aimed to investigate the acute phase of the COVID-19 outbreak in terms of perceived threats and concerns, occupational and financial impacts, social impacts and stress between 3 April and 15 May 2020. METHODS: 6040 participants are included in this report. A multivariate linear regression model was used to identify factors associated with stress changes (as measured by the Cohen's Perceived Stress Scale (PSS)) relative to pre-outbreak retrospective estimates. RESULTS: On average, PSS scores increased from low stress levels before the outbreak to moderate stress levels during the outbreak (p<0.001). The independent factors associated with stress worsening were: having a mental disorder, female sex, having underage children, heavier alcohol consumption, working with the general public, shorter sleep duration, younger age, less time elapsed since the start of the outbreak, lower stress before the outbreak, worse symptoms that could be linked to COVID-19, lower coping skills, worse obsessive-compulsive symptoms related to germs and contamination, personalities loading on extraversion, conscientiousness and neuroticism, left wing political views, worse family relationships and spending less time exercising and doing artistic activities. CONCLUSION: Cross-sectional analyses showed a significant increase from low to moderate stress during the COVID-19 outbreak. Identified modifiable factors associated with increased stress may be informative for intervention development. TRIAL REGISTRATION NUMBER: NCT04369690; Results.

Just and Realistic Expectations for Persons with Disabilities Practicing Nursing.

The Americans with Disabilities Act prohibits discrimination on the basis of disability and requires schools to provide reasonable accommodations for persons with disabilities. The profession of nursing is striving for diversity and inclusion, but barriers still exist to realizing accommodations for people with disabilities. Promoting disclosure, a supportive and enabling environment, resilience, and realistic expectations are important considerations if we are to include among our ranks health professionals who can understand, based on similar life experiences of disability, a fuller range of perspectives of the patients we care for.

An official American Thoracic Society policy statement: managing conscientious objections in intensive care medicine.

RATIONALE: Intensive care unit (ICU) clinicians sometimes have a conscientious objection (CO) to providing or disclosing information about a legal, professionally accepted, and otherwise available medical service. There is little guidance about how to manage COs in ICUs. OBJECTIVES: To provide clinicians, hospital administrators, and policymakers with recommendations for managing COs in the critical care setting. METHODS: This policy statement was developed by a multidisciplinary expert committee using an iterative process with a diverse working group representing adult medicine, pediatrics, nursing, patient advocacy, bioethics, philosophy, and law. MAIN RESULTS: The policy recommendations are based on the dual goals of protecting patients' access to medical services and protecting the moral integrity of clinicians. Conceptually, accommodating COs should be considered a "shield" to protect individual clinicians' moral integrity rather than as a "sword" to impose clinicians' judgments on patients. The committee recommends that: (1) COs in ICUs be managed through institutional mechanisms, (2) institutions accommodate COs, provided doing so will not impede a patient's or surrogate's timely access to medical services or information or create excessive hardships for other clinicians or the institution, (3) a clinician's CO to providing potentially inappropriate or futile medical services should not be considered sufficient justification to forgo the treatment against the objections of the patient or surrogate, and (4) institutions promote open moral dialogue and foster a culture that respects diverse values in the critical care setting. CONCLUSIONS: This American Thoracic Society statement provides guidance for clinicians, hospital administrators, and policymakers to address clinicians' COs in the critical care setting.

Trisomy 18 and complex congenital heart disease: seeking the threshold benefit.

A prenatal diagnosis of ductal-dependent, complex congenital heart disease was made in a fetus with trisomy 18. The parents requested that the genetic diagnosis be excluded from all medical and surgical decision-making and that all life-prolonging therapies be made available to their infant. There was conflict among the medical team about what threshold of neonatal benefit could outweigh maternal and neonatal treatment burdens. A prenatal ethics consultation was requested.

A legislatively mandated council: a model for palliative care policy integration.

Mechanisms are needed to foster discussion of policy choices about end-of-life care, identify areas of general agreement, and clarify possible areas of disagreement. The Maryland State Advisory Council on Quality Care at the End of Life (MSAC), created by legislation as a permanent part of Maryland government, is one such mechanism. We describe the rationale for creating the MSAC, its operational features, and some of its successes and challenges. Given state-to-state variation in many aspects of health care organization and financing, we do not present the MSAC as a model to be adopted in every state. The MSAC's body of work over 8 years indicates that the model can be an effective catalyst for positive change in end-of-life policy making. Reformers elsewhere should consider this model, with an eye to both the MSAC's accomplishments and areas in which a different approach might be more fruitful.

Building trustworthy relationships with critically ill patients and families.

A difficult case study involving repeated health crises and irreversible organ dysfunction illustrates the challenges critical care professionals face in caring for patients and their families. In such cases, trust is especially fragile, and coexists with its counterpart, betrayal. The Reina Trust & Betrayal Model defines 3 types of Transactional Trust. The first, Competence Trust, or the Trust of Capability, requires that clinicians practice humility, engage in inquiry, honor the patient's choices, and express compassion. The second, Contractual Trust, or the Trust of Character, demands that clinicians keep agreements, manage expectations, establish boundaries, and encourage mutually serving expectations. The third, Communication Trust, or the Trust of Disclosure, must be rooted in respect and based on truth-telling. Particularly in life-and-death situations, communication requires honesty and clarity. Each type of trust involves specific behaviors that build trust and can guide critical care professionals as they interact with patients and their families.