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.

Dyspnea in Patients with Advanced Stage Cancer: A Nurses Guide to Assessment and Treatment.

OBJECTIVE: To provide oncology nurses with education on the specific distressing symptom of dyspnea in patients with advanced cancer, including proper assessment and a hierarchical approach to both nonpharmacologic and pharmacologic dyspnea interventions. DATA SOURCES: Sources include published research findings, literature reviews, and guidelines, as well as professional opinion from practicing nurses and clinicians. CONCLUSION: Individuals with advanced cancer often experience the distressing respiratory symptom, dyspnea. Assessment tools and treatment recommendations and guidelines are available for clinicians to appropriately evaluate and treat dyspnea. Improved awareness of symptom presence and treatment options will assist nurses in advocating for their patients with advanced cancer and obtaining and delivering the necessary treatments for dyspnea relief. IMPLICATIONS FOR NURSING: Published evidence supports the many treatment options available for dyspnea relief at varying levels. Assessment, individualized treatment, education, and reassessment are key and ongoing to assist patients with advanced cancer to achieve respiratory comfort.

B-cell intrinsic and extrinsic signals that regulate central tolerance of mouse and human B cells.

The random recombination of immunoglobulin V(D)J gene segments produces unique IgM antibodies that serve as the antigen receptor for each developing B cell. Hence, the newly formed B cell repertoire is comprised of a variety of specificities that display a range of reactivity with self-antigens. Newly generated IgM+ immature B cells that are non-autoreactive or that bind self-antigen with low avidity are licensed to leave the bone marrow with their intact antigen receptor and to travel via the blood to the peripheral lymphoid tissue for further selection and maturation. In contrast, clones with medium to high avidity for self-antigen remain within the marrow and undergo central tolerance, a process that revises their antigen receptor or eliminates the autoreactive B cell altogether. Thus, central B cell tolerance is critical for reducing the autoreactive capacity and avidity for self-antigen of our circulating B cell repertoire. Bone marrow cultures and mouse models have been instrumental for understanding the mechanisms that regulate the selection of bone marrow B cells. Here, we review recent studies that have shed new light on the contribution of the ERK, PI3K, and CXCR4 signaling pathways in the selection of mouse and human immature B cells that either bind or do not bind self-antigen.

Management of Dyspnea in Advanced Cancer: ASCO Guideline.

PURPOSE: To provide guidance on the clinical management of dyspnea in adult patients with advanced cancer. METHODS: ASCO convened an Expert Panel to review the evidence and formulate recommendations. An Agency for Healthcare Research and Quality (AHRQ) systematic review provided the evidence base for nonpharmacologic and pharmacologic interventions to alleviate dyspnea. The review included randomized controlled trials (RCTs) and observational studies with a concurrent comparison group published through early May 2020. The ASCO Expert Panel also wished to address dyspnea assessment, management of underlying conditions, and palliative care referrals, and for these questions, an additional systematic review identified RCTs, systematic reviews, and guidelines published through July 2020. RESULTS: The AHRQ systematic review included 48 RCTs and two retrospective cohort studies. Lung cancer and mesothelioma were the most commonly addressed types of cancer. Nonpharmacologic interventions such as fans provided some relief from breathlessness. Support for pharmacologic interventions was limited. A meta-analysis of specialty breathlessness services reported improvements in distress because of dyspnea. RECOMMENDATIONS: A hierarchical approach to dyspnea management is recommended, beginning with dyspnea assessment, ascertainment and management of potentially reversible causes, and referral to an interdisciplinary palliative care team. Nonpharmacologic interventions that may be offered to relieve dyspnea include airflow interventions (eg, a fan directed at the cheek), standard supplemental oxygen for patients with hypoxemia, and other psychoeducational, self-management, or complementary approaches. For patients who derive inadequate relief from nonpharmacologic interventions, systemic opioids should be offered. Other pharmacologic interventions, such as corticosteroids and benzodiazepines, are also discussed.Additional information is available at www.asco.org/supportive-care-guidelines.

Trajectory of Dyspnea and Respiratory Distress among Patients in the Last Month of Life.

BACKGROUND: The trajectory of dyspnea has been reported among patients approaching the end of life. However, patients near death have been dropped from longitudinal studies or excluded altogether because of an inability to self-report; proxy estimates have been reported. It is not known whether dyspnea or respiratory distress remains stable, escalates, or abates as patients reach last days. OBJECTIVE: Determine trajectory of dyspnea (self-reported) and respiratory distress (observed) among patients who were approaching death. DESIGN: A prospective, repeated-measures study of dyspnea/respiratory distress among a sample of hospice patients was done. Measures were collected at each patient encounter from hospice enrollment until patient death. MEASUREMENTS: Dyspnea was measured in response to "Are you short of breath?" and using the numeric rating scale anchored at 0 and 10. Nurses measured respiratory distress with the Respiratory Distress Observation Scale (RDOS). Patient consciousness (Reaction Level Scale), nearness to death (Palliative Performance Scale), diagnoses, and demographics were recorded. Data for the 30-day interval before death were analyzed. RESULTS: The sample was 91 patients who were female (58%) and Caucasian (83%) with dementia (32%), heart failure (26%), and cancer (13%). RDOS increased significantly from mild distress 30 days before death to moderate/severe distress on the day of death (F = 10.8, p < 0.0001). Distress was strongly correlated with nearness to death (r = -0.97, p < 0.0001) and consciousness (r = 0.97, p < 0.0001). CONCLUSIONS: Respiratory distress escalated in the last days. Inability to self-report raises care concerns about under-recognition and under-treatment of respiratory distress.

Caring for dying patients in the intensive care unit: managing pain, dyspnea, anxiety, delirium, and death rattle.

Critically ill patients receiving palliative care at the end of life are at high risk for experiencing pain, dyspnea, and death rattle. Nearly all these patients are at risk for the development of delirium. Patients who are alert may experience anxiety. Advanced practice nurses and staff nurses are integral to detecting and treating these symptoms. Pain, dyspnea, and anxiety should be routinely assessed by patient self-report when possible. Routine behavioral screening for delirium is recommended. Behavioral observation tools to detect pain and dyspnea and proxy assessments guide symptom identification when the patient cannot provide a self-report. Evidence-based interventions are offered for both prevention and treatment of pain, dyspnea, anxiety, and delirium. Death rattle does not produce patient distress, and current pharmacological treatment lacks an evidence base. Pain management has a robust evidence base compared to management of dyspnea, anxiety, and delirium among this population; well-designed, adequately powered studies are needed.

Intensity cut-points for the Respiratory Distress Observation Scale.

BACKGROUND: The Respiratory Distress Observation Scale(©) is an innovative solution to assessment when a dyspnea report cannot be elicited. The Respiratory Distress Observation Scale has acceptable reliability and validity psychometrics. AIM: To identify distress-intensity cut-points of the Respiratory Distress Observation Scale. DESIGN: Receiver operating characteristic curve analysis was conducted with inpatients stratified by four levels of respiratory distress-none, mild, moderate, or severe. Patients provided three self-report measures of dyspnea: dichotomous (yes/no); a ranking of none, mild, moderate, or severe; and a numerical rating scale. Respiratory distress was assessed using the Respiratory Distress Observation Scale instrument. SETTING/PARTICIPANTS: Participants were 136 adult inpatients, mean age 61.8 years (standard deviation = 13.18 years), 89.7% African American, and 56.6% female, who were recruited from an urban, tertiary care hospital in the Midwest of the United States. RESULTS: In all, 47% (n = 64) self-reported dyspnea (yes/no). Ranking was distributed as follows: none = 36, mild = 35, moderate = 40, and severe = 25. Numerical rating scale scores ranged from 0 to 10, mean = 4.99 (standard deviation = 2.9). Respiratory Distress Observation Scale scores ranged from 0 to 7, median (interquartile range) = 2 (1-3). Receiver operating characteristic curve analysis-determined Respiratory Distress Observation Scale score of 0-2 suggests little or no respiratory distress; score ≥3 signified moderate to severe distress. CONCLUSION: A Respiratory Distress Observation Scale score ≥3 signifies a patient's need for palliation of respiratory distress. An end-point for identifying responsiveness to treatment, in other words, respiratory comfort, is Respiratory Distress Observation Scale <3. Because patients with imminent respiratory failure, as typified by dying patients, were not represented yielding lower than expected Respiratory Distress Observation Scale scores, further substantiation is needed to determine moderate or severe cut-points.

An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis.

In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.

Death rattle is not associated with patient respiratory distress: is pharmacologic treatment indicated?

BACKGROUND: Studies examining the effectiveness of treatment in reducing the noises of death rattle have been conducted; however, the physical impact of death rattle on the patient experiencing the phenomenon has not been investigated. Treatments may be undertaken to appease family and staff but these treatments may be more burdensome than beneficial to the patient. Further, nonbeneficial treatments increase the cost of care. OBJECTIVE: To determine if patients with naturally occurring death rattle experience respiratory distress. DESIGN: A prospective, two-group observation study was conducted. Patients who were near death were stratified into those with and without death rattle. SETTING/SUBJECTS: Seventy-one dying patients were recruited from three palliative care and hospice settings. Patients were excluded if they had an artificial airway or if their clinical condition caused a secondary source of death rattle, identified as pseudo-death rattle. MEASUREMENTS: Daily observations were made for death rattle intensity and respiratory distress along with use of antisecretory medications. RESULTS: About half of the sample had no death rattle (55%).There were no differences in respiratory distress when patients with and without death rattle were compared (t=1.48, p=0.143). Death rattle intensity and respiratory distress were not correlated (r=-0.13, p=0.477). Few patients (17%) were medicated with antisecretory agents. Many (58%) patients receiving an antisecretory agent did not experience a reduction in death rattle. CONCLUSIONS: Respiratory distress was not associated with death rattle among patients who were near death. In many cases, antisecretory agents did not produce quiet breathing.

Oxygen is nonbeneficial for most patients who are near death.

CONTEXT: Clinicians prescribe and administer oxygen in response to reports of dyspnea, in the face of dropping oxygen saturation, as a "routine" comfort intervention, or to support anxious family members. Oxygen may produce nasal irritation and increase the cost of care. OBJECTIVES: To determine the benefit of administering oxygen to patients who are near death. METHODS: A double-blind, repeated-measure observation with the patient as his/her own control was conducted. The Respiratory Distress Observation Scale(©) measured presence and intensity of distress at baseline and at every gas or flow change. Medical air, oxygen, and no flow were randomly alternated every 10 minutes via nasal cannula with patients who were near death, at risk for respiratory distress, with no distress at the baseline of testing. Each patient had two encounters under each condition, yielding six encounters per patient. RESULTS: Patients were 66% female, 34% white, and 66% African American, and ages 56-97 years. Patients had heart failure (25%), chronic obstructive pulmonary disease (34%), pneumonia (41%), or lung cancer (9%). Most (91%) patients tolerated the protocol with no change in respiratory comfort. Three patients (9%) displayed distress and were restored to baseline oxygen; one patient died during the protocol while displaying no distress. Repeated-measure analysis of variance revealed no differences in the Respiratory Distress Observation Scale under changing gas and flow conditions. CONCLUSION: The routine application of oxygen to patients who are near death is not supported. The n-of-1 trial of oxygen in clinical practice is appropriate in the face of hypoxemic respiratory distress.

Palliative care consultation in the ICU #253.

Specialist palliative care consultations, together with integration of palliative care principles into the care of all ICU patients, can improve the patient/family experience, reduce length of stay, improve ICU throughput without increasing mortality, and lower health care costs.

Dyspnea prevalence, trajectories, and measurement in critical care and at life's end.

PURPOSE OF REVIEW: Dyspnea is a multidimensional response to an asphyxial threat that heralds respiratory failure. A clinician's ability to treat dyspnea warrants understanding the prevalence, burden, trajectories, and measurement across chronic conditions and exacerbations. This review focuses on two contexts: the intensive care unit and the near death stage of illness. RECENT FINDINGS: Dyspnea is the most distressing symptom experienced by critically ill patients at risk for dying. New longitudinal studies reveal varying dyspnea trajectories over time and by diagnosis. Patients with noncancer diagnoses, particularly chronic obstructive pulmonary disease, experience severe dyspnea for months before death, whereas patients with cancer even without apparent cardiorespiratory disease have an escalation of dyspnea near death. The sickest patients and those who are cognitively impaired or unconscious are not represented because self-report measures are used. Thus, dyspnea is underrepresented in most end-of-life cohorts. In most data, the Numeric Rating Scale for the intensity of breathlessness, while unidimensional, is the most valid measure for palliative care because of its simplicity. Use of the Respiratory Distress Observation Scale in future studies will permit the inclusion of patients who are unable to self-report dyspnea. SUMMARY: In summary, new evidence is demonstrating the high prevalence and distress associated with dyspnea among critically ill patients and patients near death.

Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes.

The impact of a multidisciplinary educational intervention to reduce PEG tube placement in patients with terminal-stage dementia: a translation of research into practice.

The purpose of this translation of research into practice (TRIP) project was to to determine the impact of a multidisciplinary education-consultation intervention to reduce percutaneous endoscopic gastrostomy (PEG) tube placement in patients with terminal-stage dementia at a single urban hospital in a city characterized by numerous health care transitions. We attempted a "just-in-time" approach to educate busy clinicians through explicit recommendations offered during routine and requested consultation. The project results showed that the intervention had a modest positive clinical impact.

Assessing respiratory distress when the patient cannot report dyspnea.

Ensuring patient comfort begins with a comprehensive assessment for symptom distress. The dying patient poses unique challenges for assessment because of the high prevalence of declining and impaired cognition that typifies this population. The focus of this paper is on the practical clinical question: How can we recognize respiratory distress when the patient cannot provide a report about dyspnea?

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU).

OBJECTIVE: To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. DATA SOURCES: We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms "intensive care," "critical care," or "ICU" and "palliative care"; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report. DATA EXTRACTION AND SYNTHESIS: We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families. CONCLUSIONS: There are two main models for intensive care unit-palliative care integration: 1) the "consultative model," which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the "integrative model," which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit-palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit-palliative care initiative can provide important benefits for patients, families, and providers.

A review of quality of care evaluation for the palliation of dyspnea.

Assessment and management of dyspnea has emerged as a priority topic for quality evaluation and improvement. Evaluating dyspnea quality of care requires valid, reliable, and responsive measures of the care provided to patients across settings and diseases. As part of an Agency for Healthcare Research and Quality Symposium, we reviewed quality of care measures for dyspnea by compiling quality measures identified in systematic searches and reviews. Systematic reviews identified only three existing quality measurement sets that included quality measures for dyspnea care. The existing dyspnea quality measures reported by retrospective evaluations of care assess only four aspects: dyspnea assessment within 48 hours of hospital admission, use of objective scales to rate dyspnea severity, identification of management plans, and evidence of dyspnea reduction. To begin to improve care, clinicians need to assess and regularly document patient's experiences of dyspnea. There is no consensus on how dyspnea should be characterized for quality measurement, and although over 40 tools exist to assess dyspnea, no rating scale or instrument is ideal for palliative care. The panel recommended that dyspnea assessment should include a measure of intensity and some inquiry into the associated bother or distress experienced by the patient. A simple question into the presence or absence of dyspnea would be unlikely to help guide therapy, as complete relief of dyspnea in advanced disease would not be anticipated. Additional knowledge gaps include standards for clinical dyspnea care, assessment in the cognitively impaired, and evaluation of effectiveness of dyspnea care for patients with advanced disease.

A Respiratory Distress Observation Scale for patients unable to self-report dyspnea.

BACKGROUND: Standard measures of dyspnea rely on self-report. Cognitive impairment and nearness to death may interfere with symptom distress reporting leading to underrecognition and overtreatment or undertreatment. Previous psychometric testing of the Respiratory Distress Observation Scale (RDOS) demonstrated internal consistency and convergent validity with dyspnea self-report and discriminant validity with pain and no dyspnea. Additional testing was needed with patients unable to self-report. The aim of this study was to establish further the reliability and construct validity of a revised RDOS. METHODS: An observational design was used with 89 consecutive patients referred for inpatient palliative care consultation and at risk for dyspnea who had one or more of lung cancer, chronic obstructive pulmonary disease (COPD), heart failure, or pneumonia. Patients were observed and the RDOS scored once each day for up to three days after the initial consultation. Other measures included: dyspnea self-report, neurologic diagnoses, opioid or benzodiazepine use, peripheral oxygen saturation, end-tidal carbon dioxide level, consciousness, cognitive state, nearness to death, and patient demographics. RESULTS: Perfect interrater reliability across data collectors was achieved. No differences in RDOS scoring were found by patient demographics. RDOS was associated with use of oxygen (p < 0.01), oxygen saturation (p < 0.01) and nearness to death (p < 0.01). A significant decrease in RDOS was found over time corresponding with treatment (p < 0.01). The reliability of this 8-item scale using Cronbach alpha is 0.64. CONCLUSIONS: Declining consciousness and/or cognition are expected when patients are near death. The RDOS performed well when tested with terminally ill patients who were at risk for respiratory distress, most of whom could not self-report dyspnea. The tool is sensitive to detect changes over time and measure response to treatment. The RDOS is simple to use; scoring takes less than 5 minutes. The RDOS has clinical and research utility to measure and trend respiratory distress and response to treatment.