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Innovation is needed to improve care of the seriously ill, and there are important opportunities as we transition from a volume- to value-based payment system. Not all seriously ill are dying; some recover, while others are persistently functionally impaired. While we innovate in service delivery and payment models for the seriously ill, it is important that we concurrently develop accountability that ensures a focus on high-quality care rather than narrowly focusing on cost containment. The Gordon and Betty Moore Foundation convened a meeting of 45 experts to arrive at guiding principles for measurement, create a starter measurement set, specify a proposed definition of the denominator and its refinement, and identify research priorities for future implementation of the accountability system. A series of articles written by experts provided the basis for debate and guidance in formulating a path forward to develop an accountability system for community-based programs for the seriously ill, outlined in this article. As we innovate in existing population-based payment programs such as Medicare Advantage and develop new alternative payment models, it is important and urgent that we develop the foundation for accountability along with actionable measures so that the healthcare system ensures high-quality person- and family-centered care for persons who are seriously ill.

As our population ages and the burden of chronic illness rises, there is increasing need to implement quality metrics that measure and benchmark care of the seriously ill, including the delivery of both primary care and specialty palliative care. Such metrics can be used to drive quality improvement, value-based payment, and accountability for population-based outcomes.In this article, we examine use of the electronic health record (EHR) as a tool to assess quality of serious illness care through narrative review and description of a palliative care quality metrics program in a large healthcare system.In the search for feasible, reliable, and valid palliative care quality metrics, the EHR is an attractive option for collecting quality data on large numbers of seriously ill patients. However, important challenges to using EHR data for quality improvement and accountability exist, including understanding the validity, reliability, and completeness of the data, as well as acknowledging the difference between care documented and care delivered. Challenges also include developing achievable metrics that are clearly linked to patient and family outcomes and addressing data interoperability across sites as well as EHR platforms and vendors. This article summarizes the strengths and weakness of the EHR as a data source for accountability of community- and population-based programs for serious illness, describes the implementation of EHR data in the palliative care quality metrics program at the University of Washington, and, based on that experience, discusses opportunities and challenges. Our palliative care metrics program was designed to serve as a resource for other healthcare systems.Although the EHR offers great promise for enhancing quality of care provided for the seriously ill, significant challenges remain to operationalizing this promise on a national scale and using EHR data for population-based quality and accountability.

The past 2 decades have seen remarkable advances in our abilities to treat and prevent stroke. Better vascular risk factor control has led to a decrease in stroke incidence by 50% since the early 90s.1 Improvements in acute stroke care, especially at specialized centers, have led to a decline in overall stroke mortality. Over the past decade, stroke death rate in the United States decreased by one third, and stroke has moved from the third to the fifth leading cause of mortality.2 If a patient with an acute ischemic stroke presents early enough to the hospital, systems should be in place to appropriately administer tissue-type plasminogen activator within less than an hour of arrival, thereby often doubling their chances of achieving future independence.3,4 Some patients may continue on to the angio-suite for mechanical clot retrieval; those who do are twice more likely to be independent at 3 months.5–7 Despite these remarkable advances, only around 5% to 7% of patients with acute ischemic stroke receive tissue-type plasminogen activator.8,9 Mechanical thrombectomy is reserved for an even smaller proportion. Although community education may increase the proportion of patients calling for help sooner10 and mobile CT scanners and prehospital treatment may shorten the time and increase the proportion of patients receiving tissue-type plasminogen activator,11 for most patients, stroke remains disabling and often deadly. For these reasons, palliative care remains an important part of the stroke care that we deliver, especially for patients with severe stroke. Here we provide a contemporary review of the literature and offer some recommendations on how stroke providers may integrate palliative care into the care of their patients with severe ischemic or hemorrhagic stroke, focusing on early interactions. Stroke palliative care is fundamental to high-quality stroke care …

Patients admitted to the neurological or neurosurgical ICU are likely to have palliative care needs. The goals of this project are to encourage the ICU team to identify palliative care needs for patients and their families and potential ways to meet those needs.Quality improvement project using a parallel-group prospective cohort design.Single neuro-ICU at a large, academic medical center.All patients admitted to the neuro-ICU from September 1, 2013, to November 30, 2013.We developed a palliative care needs screening tool consisting of four questions: 1) Does the patient have distressing physical or psychological symptoms? 2) Are there specific support needs for patient or family? 3) Are treatment options matched with patient-centered goals? 4) Are there disagreements among teams and family? We implemented this daily screening tool on morning rounds for one of two neurocritical care services that alternate admitting days to a single neuro-ICU. We examined prevalence and nature of palliative care needs and actions to address those needs, comparing the services with and without screening.Over the 3-month period, 130 patients were admitted to the service with screening and 132 patients to the service without screening. The two groups did not differ with regard to age, gender, Glasgow Coma Scale, or diagnosis. Palliative care needs were identified in 62% of screened patients (80/130). Needs were mainly social support (53%) and establishing goals of care (28%). Screening was associated with more documented family conferences (p = 0.019) and a trend toward more palliative care consultations (p = 0.056).We developed a brief palliative care needs screening tool that identified palliative care needs for 62% neuro-ICU patients. This tool was associated with actions to meet these needs, potentially improving care for patients and their families.

Background— A growing number of hospitals have begun to implement policies allowing for family presence during resuscitation (FPDR). However, the overall safety of these policies and their effect on resuscitation care is unknown. Methods and Results— We conducted an observational cohort study of 252 hospitals in the United States with 41 568 adults with cardiac arrest. Multivariable hierarchical regression models were used to evaluate patterns of care at hospitals with and without an FPDR policy. Primary outcomes included return of spontaneous circulation and survival to discharge. Secondary outcomes included resuscitation quality, interventions, and facility-reported potential resuscitation systems errors. There were no significant differences in facility characteristics between hospitals with and without an FPDR policy, nor were there significant differences in return of spontaneous circulation (adjusted risk ratio, 1.02; 95% confidence interval, 0.95–1.06) or survival to discharge (adjusted risk ratio, 1.05; 95% confidence interval, 0.95–1.15). There was a small, borderline significant decrease in the mean time to defibrillation at hospitals with an FPDR policy compared with hospitals without the policy (mean difference, 0.32 minutes; 95% confidence interval, −0.01 to 0.64). Resuscitation quality, interventions, and facility-reported potential resuscitation systems errors did not meaningfully differ between hospitals with and without an FPDR policy. Conclusions— Hospitals with an FPDR policy generally have no statistically significant differences in outcomes and processes of care as hospitals without this policy, suggesting such policies may not negatively affect resuscitation care. Further study is warranted about the direct effect of FPDR attempts on adult patients with an in-hospital cardiac arrest and their families.

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

Intensive Care Medicine is changing. New types of pa pers, such as “What’s New in Intensive Care?”, “Understanding the Disease” and “My Paper 20 Years Later”, form a stable proportion of the articles published in the 2014 issues. This diversification has been received with an extraordinary enthusiasm and appreciation by the worldwide readership, as evidenced by the massive number of hits and downloads. In this first of three 2014 “Year in Review” articles, we cover those papers published in Intensive Care Medicine during the past year which focus on cardiac arrest, ultrasonography in critically ill patients, neurocritical care, ICU-acquired weakness, nutrition, acute kidney injury, as well as a number of miscellaneous topics.

Purpose of review Advance care planning and palliative care interventions can improve the quality of end-of-life care by reducing unwanted high intensity care at the end of life. This may have important economic implications and may reduce the financial burden of patients' families. We review the literature to examine the impact advance care planning and palliative care has on ICU utilization, specifically ICU admissions and ICU length of stay (LOS), and to provide insight into ways to reduce costs and financial burden of care while simultaneously improving quality of care. Recent findings We identified three studies assessing the impact of palliative care consultation on ICU admissions for patients with life-limiting illness; all three demonstrate reduced ICU admissions for patients receiving palliative care consultation. Among 16 studies evaluating ICU LOS as an outcome, five report no change and 11 report decrease in LOS for patients receiving advance care planning or palliative care. These studies are heterogeneous in design and target population; however, a trend toward reduced ICU utilization exists. Summary Advance care planning and palliative care can reduce ICU utilization at the end of life. The degree to which reducing ICU utilization decreases emotional and financial burden of end-of-life care for patients and families is unknown.

OBJECTIVE Although end-of-life care in the ICU accounts for a large proportion of health-care costs, few studies have examined the association between costs and satisfaction with care. The objective of this study was to investigate the association of ICU costs with family- and nurse-assessed quality of dying and family satisfaction. METHODS: This was an observational study surveying families and nurses for patients who died in the ICU or within 30 h of transfer from the ICU. A total of 607 patients from two Seattle hospitals were included in the study. Survey data were linked with administrative records to obtain ICU and hospital costs. Regression analyses assessed the association between costs and outcomes assessing satisfaction with care: nurse- and family-assessed Quality of Death and Dying (QODD-1) and Family Satisfaction in the ICU (FS-ICU). RESULTS: For family-reported outcomes, patient insurance status was an important modifier of results. For underinsured patients, higher daily ICU costs were significantly associated with higher FS-ICU and QODD-1 ( P P = .01, respectively); this association was absent for privately insured or Medicare patients ( P = .50 and P = .85, QODD-1 and FS-ICU, respectively). However, higher nurse-assessed QODD-1 was significantly associated with lower average daily ICU cost and total hospital cost ( P P = .05, respectively). CONCLUSIONS: Family-rated satisfaction with care and quality of dying varied depending on insurance status, with underinsured families rating satisfaction with care and quality of dying higher when average daily ICU costs were higher. However, patients with higher costs were assessed by nurses as having a poorer quality of dying. These findings highlight important differences between family and clinician perspectives and the important role of insurance status.

Rationale: The goal of shared decision making is to match patient preferences, including evaluation of potential future outcomes, with available management options. Yet, it is unknown how patients with smoking-related thoracic diseases or their surrogates display future-oriented thinking.

Background Families’ perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the “Family Satisfaction in the ICU” (euroFS-ICU). The aim of the study was to examine assessments of satisfaction with care in a large cohort of Danish and Dutch family members and to examine the measurement characteristics of the euroFS-ICU. Methods Data were from 11 Danish and 10 Dutch ICUs and included family members of patients admitted to the ICU for 48 hours or more. Surveys were mailed 3 weeks after patient discharge from the ICU. Selected patient characteristics were retrieved from hospital records. Results A total of 1077 family members of 920 ICU patients participated. The response rate among family members who were approached was 72%. “Excellent” or “Very good” ratings on all items ranged from 58% to 96%. Items with the highest ratings were concern toward patients, ICU atmosphere, opportunities to be present at the bedside, and ease of getting information. Items with room for improvement were management of patient agitation, emotional support of the family, consistency of information, and inclusion in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators. Conclusions Most family members were moderately or very satisfied with patient care, family care, information and decision-making, but areas with room for improvement were also identified. Psychometric assessments suggest that composite scores constructed from these items as representations of either overall satisfaction or satisfaction with specific sub-domains do not meet rigorous measurement standards. The euroFS-ICU and other similar instruments may benefit from adding reflective indicators. Electronic supplementary material The online version of this article (doi:10.1186/s13054-017-1826-7) contains supplementary material, which is available to authorized users.

Examine the association of a daily palliative care needs checklist on outcomes for family members of patients discharged from the neurosciences intensive care unit (neuro-ICU). We conducted a prospective, longitudinal cohort study in a single, thirty-bed neuro-ICU in a regional comprehensive stroke and level 1 trauma center. One of two neuro-ICU services that admit patients to the same ICU on alternating days used a palliative care needs checklist during morning work rounds. Between March and October, 2015, surveys were mailed to family members of patients discharged from the neuro-ICU. Nearly half of surveys (n = 91, 48.1%) were returned at a median of 4.7 months. At the time of survey completion, mean Modified rankin scale score (mRS) of neuro-ICU patients was 3.1 (SD 2). Overall ratings of quality of care were relatively high (82.2 on a 0–100 scale) with 32% of family members meeting screening criteria for depressive syndrome. The primary outcome measuring family satisfaction, consisting of eight items from the Family Satisfaction in the ICU questionnaire, did not differ significantly between families of patients from either ICU service nor did family ratings of depression (PHQ-8) and post-traumatic stress (PCL-17). Among families of patients discharged from the neuro-ICU, the daily use of a palliative care needs checklist had no measurable effect on family satisfaction scores or long-term psychological outcomes. Further research is needed to identify optimal interventions to meet the palliative care needs specific to family members of patients treated in the neuro-ICU.

To explore the importance, challenges, and opportunities using qualitative research to enhance development of clinical practice guidelines, using recent guidelines for family-centered care in the ICU as an example.In developing the Society of Critical Care Medicine guidelines for family-centered care in the neonatal ICU, PICU, and adult ICU, we developed an innovative adaptation of the Grading of Recommendations, Assessments, Development and Evaluations approach to explicitly incorporate qualitative research. Using Grading of Recommendations, Assessments, Development and Evaluations and the Council of Medical Specialty Societies principles, we conducted a systematic review of qualitative research to establish family-centered domains and outcomes. Thematic analyses were undertaken on study findings and used to support Population, Intervention, Comparison, Outcome question development.We identified and employed three approaches using qualitative research in these guidelines. First, previously published qualitative research was used to identify important domains for the Population, Intervention, Comparison, Outcome questions. Second, this qualitative research was used to identify and prioritize key outcomes to be evaluated. Finally, we used qualitative methods, member checking with patients and families, to validate the process and outcome of the guideline development.In this, a novel report, we provide direction for standardizing the use of qualitative evidence in future guidelines. Recommendations are made to incorporate qualitative literature review and appraisal, include qualitative methodologists in guideline taskforce teams, and develop training for evaluation of qualitative research into guideline development procedures. Effective methods of involving patients and families as members of guideline development represent opportunities for future work.

Burn specialists have long recognized the need for and have role modeled a comprehensive approach incorporating relief of distress as part of care during critical illness. More recently, palliative care specialists have become part of the healthcare team in many U.S. hospitals, especially larger academic institutions that are more likely to have designated burn centers. No current literature describes the intersection of palliative care and burn care or integration of primary and specialist palliative care in this unique context. This Perspective gives an overview of burn care; focuses on pain and other symptoms in burn intensive care unit settings; addresses special needs of critically ill burned patients, their families, and clinicians for high-quality palliative care; and highlights potential benefits of integrating primary and specialist palliative care in burn critical care. MEDLINE and the Cumulative Index to Nursing and Allied Health Literature were searched, and an e-mail survey was used to obtain information from U.S. Burn Fellowship Program directors about palliative medicine training. The Improving Palliative Care in the Intensive Care Unit Project Advisory Board synthesized published evidence with their own research and clinical experience in preparing this article. Mortality and severe morbidity for critically ill burned patients remains high. American Burn Association guidelines lay the foundation for a robust system of palliative care delivery, embedding palliative care principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and the culture of the particular burn unit, can optimize quality and integration of primary and specialist palliative care in this distinctive setting.

Aim The purpose of this paper is to describe the conceptual framework for a goals of care (GoC) intervention, elements, and findings of intervention feasibility, acceptability, and benefits from both patients with heart failure (HF) and their providers. Background Receiving care at a mechanical circulatory support center for advanced HF offers new opportunities for treatment, making the implementation of a GoC intervention timely and crucial in helping patients determine next steps in HF treatment. Methods The GoC intervention was designed using a self-management framework, incorporating the concepts of self-efficacy, patient activation, and patient motivation. At the conclusion of the study, open-ended exit interviews were conducted with patients and providers. Content analysis was used to derive the feasibility, acceptability, and benefits of the intervention. Results Forty-one patients with HF, with average age 58.2 ± 11.3 years, LVEF = 30.3 ± 9.7%, and New York Heart Association Functional Class (NYHA FC) = 2.4 ± 0.8, and nine HF providers participated in the study. Patient benefits from the intervention included enhanced communication with their provider and family members, increased confidence to have a conversation with the provider, and refreshed HF knowledge. Provider benefits from the intervention were facilitating a conversation with the patient and learning new information about the patient's goals and values. Conclusion The GoC intervention provides an avenue to align patient goals and values with treatment choices in the context of advanced heart failure, so that patient quality of life is enhanced and costs of care can be reduced.

Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members.The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps.We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future.We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions.The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.

BACKGROUND: The Quality of Dying and Death (QODD) questionnaire is used as a selfreported measure to allow families and clinicians to assess patients' quality of dying and death. We evaluated end-of-life (EOL) experiences as measured by the QODD completed by families and nurses in the United States and the Netherlands to explore similarities and differences in these experiences and identify opportunities for improving EOL care.METHODS: Questionnaire data were gathered from family members of patients dying in the ICU and nurses caring for these patients. In The Netherlands, data were gathered in three teaching hospitals, and data was gathered from 12 sites participating in a randomized trial in the United States. The QODD consists of 25 items and has been validated in the United States.RESULTS: Data from 446 patients were analyzed (346 in the United States and 100 in the Netherlands). Dutch patients were older than those in the United States (72 + 10.2 years vs 65 + 16.0 years; P CONCLUSIONS: The QODD was rated similarly by family members in the United States and the Netherlands but varied when assessed by nurses. These differences may be due to organizational or cultural differences between the two countries or to expectations of respondents.

The increasing use of ECMO ensures that we, our patients, and their surrogates will increasingly face difficult decisions regarding the most appropriate use and limitations of this technology. We must make every effort to assess the values and goals of the patient, to communicate prognosis for survival and quality of life, to involve patients, families, and our multidisciplinary teams, and to provide emotional and spiritual support for all involved. We must approach individual clinical scenarios with great deliberation, yet it is clear that the advent of new technologies should not fundamentally change our ethical approach to our patients

Great differences in end-of-life practices in treating the critically ill around the world warrant agreement regarding the major ethical principles. This analysis determines the extent of worldwide consensus for end-of-life practices, delineates where there is and is not consensus, and analyzes reasons for lack of consensus. Critical care societies worldwide were invited to participate. Country coordinators were identified and draft statements were developed for major end-of-life issues and translated into six languages. Multidisciplinary responses using a web-based survey assessed agreement or disagreement with definitions and statements linked to anonymous demographic information. Consensus was prospectively defined as80% agreement. Definitions and statements not obtaining consensus were revised based on comments of respondents, and then translated and redistributed. Of the initial 1,283 responses from 32 countries, consensus was found for 66 (81%) of the 81 definitions and statements; 26 (32%) had90% agreement. With 83 additional responses to the original questionnaire (1,366 total) and 604 responses to the revised statements, consensus could be obtained for another 11 of the 15 statements. Consensus was obtained for informed consent, withholding and withdrawing life-sustaining treatment, legal requirements, intensive care unit therapies, cardiopulmonary resuscitation, shared decision making, medical and nursing consensus, brain death, and palliative care. Consensus was obtained for 77 of 81 (95%) statements. Worldwide consensus could be developed for the majority of definitions and statements about end-of-life practices. Statements achieving consensus provide standards of practice for end-of-life care; statements without consensus identify important areas for future research.

To evaluate the effect of 1) patient values as expressed by family members and 2) a requirement to document patients' functional prognosis on intensivists' intention to discuss withdrawal of life support in a hypothetical family meeting.A three-armed, randomized trial.One hundred seventy-nine U.S. hospitals with training programs in critical care accredited by the Accreditation Council for Graduate Medical Education.Six hundred thirty intensivists recruited via e-mail invitation from a database of 1,850 eligible academic intensivists.Each intensivist was randomized to review 10, online, clinical scenarios with a range of illness severities involving a hypothetical patient (Mrs. X). In control-group scenarios, the patient did not want continued life support without a reasonable chance of independent living. In the first experimental arm, the patient wanted life support regardless of functional outcome. In the second experimental arm, patient values were identical to the control group, but intensivists were required to record the patient's estimated 3-month functional prognosis.Response to the question: "Would you bring up the possibility of withdrawing life support with Mrs. X's family?" answered using a five-point Likert scale. There was no effect of patient values on whether intensivists intended to discuss withdrawal of life support (p = 0.81), but intensivists randomized to record functional prognosis were 49% more likely (95% CI, 20-85%) to discuss withdrawal.In this national, scenario-based, randomized trial, patient values had no effect on intensivists' decisions to discuss withdrawal of life support with family. However, requiring intensivists to record patients' estimated 3-month functional outcome substantially increased their intention to discuss withdrawal.

Quality of life is frequently impaired among survivors of critical illness, and psychiatric morbidity is an important element contributing to poor quality of life in these patients. Among potential manifestations of psychiatric morbidity following critical illness, symptoms of posttraumatic stress are prevalent and intricately linked to the significant stressors present in the intensive care unit (ICU). As our understanding of the epidemiology of post-ICU posttraumatic stress disorder improves, so must our ability to identify those at highest risk for symptoms in the period of time following critical illness and our ability to implement strategies to prevent symptom development. In addition, a focus on strategies to address clinically apparent psychiatric morbidity will be essential. Much remains to be understood about the identification, prevention, and management of this significant public health problem. This article addresses the importance of uniformity in future epidemiologic studies, proposes framing of risk factors into those likely to be modifiable versus non-modifiable, and provides an assessment of modifiable risk factors in the context of a novel conceptual model that offers insight into potential strategies to attenuate symptoms of posttraumatic stress among survivors of critical illness.

Objectives Multiple training pathways are recognized by the Accreditation Council for Graduate Medical Education (ACGME) for internal medicine (IM) physicians to certify in critical care medicine (CCM) via the American Board of Internal Medicine. While each involves 1 year of clinical fellowship training in CCM, substantive differences in training requirements exist among the various pathways. The Critical Care Societies Collaborative convened a task force to review these CCM pathways and to provide recommendations for unified and coordinated training requirements for IM-based physicians.

Effective physician communication at the end-of-life is a cornerstone to providing patient-centered palliative care. Educational programs in physician communication often rely on self-assessments of physician knowledge and attitudes and seldom provide patients' reports. Thus, it is unclear whether physician self-assessments are associated with patient perspectives.To determine whether physician trainees' self-assessments of their communication skills in religious/spiritual discussions were associated with assessments obtained from patients under their care.Prospective, observational, survey-based study of internal medicine trainees' self-assessments matched with their patients' reports. Data were obtained from preintervention surveys prior to the trainees participating in a communication educational intervention.The study took place at two internal medicine training programs, one in the southeastern United States and one in the northwestern United States. Our subjects were 181 physician trainees in internal medicine and 541 patients with advanced medical illnesses under their care.The outcomes were patient reports of the occurrence of religious/spiritual communication and patient ratings of the quality of this communication. The primary predictor of interest was trainees' preintervention self-assessments of their competency in religious/spiritual communication.Using multiple variable and path analysis we found that trainees' self-assessments of their communication skills in religious/spiritual communication was significantly and positively associated with their patients' reports of the occurrence and ratings of religious/spiritual communication.Physician trainee self-assessments may be a valid surrogate for patient ratings of quality with respect to religious/spiritual communication. This specific domain of physician-patient communication should receive further investigation as our finding contrasts with reports of more general measures of physician-patient end-of-life communication.

The authors evaluated associations of patient and clinician characteristics with high-quality communication among patients with chronic obstructive pulmonary disease. Using a cross-sectional analysis from patients with chronic obstructive pulmonary disease enrolled in a clinical trial, the authors evaluated the association of patient and clinician characteristics with patient-reported communication quality. The authors measured these associations using general estimating equations and adjusted odds ratios for best imagined communication quality. Most patient and clinician characteristics, including age, race/ethnicity, mental health attributes, and clinician specialty, were not associated with communication quality. Patient-reported clinician expertise (OR = 2.10, 95% CI [1.52, 2.88], p.001) was associated with increased communication quality, while the patient not being married was associated with decreased quality (OR = 0.52, 95% CI [0.27, 0.99], p = .047). Only one modifiable characteristic, patient-reported clinician expertise, was associated with best imagined communication quality. This characteristic may be important to include as a potential intermediate outcome in future communication intervention studies. Predictors and outcomes of communication quality are not uniform across patient populations and settings. To maximize the effectiveness of communication interventions, it is important to have a thorough understanding of which patient, clinician, and system factors are associated with communication quality.

Background: Communication with patients and families is an essential component of high-quality care in serious illness. Small-group skills training can result in new communication behaviors, but past studies have used facilitators with extensive experience, raising concerns this is not scalable. Objective: The objective was to investigate the effect of an experiential communication skills building workshop (Codetalk), led by newly trained facilitators, on internal medicine trainees' and nurse practitioner students' ability to communicate bad news and express empathy. Design: Trainees participated in Codetalk; skill improvement was evaluated through pre- and post- standardized patient (SP) encounters. Setting and subjects: The subjects were internal medicine residents and nurse practitioner students at two universities. Intervention and measurements: The study was carried out in anywhere from five to eight half-day sessions over a month. The first and last sessions included audiotaped trainee SP encounters coded for effective communication behaviors. The primary outcome was change in communication scores from pre-intervention to post-intervention. We also measured trainee characteristics to identify predictors of performance and change in performance over time. Results: We enrolled 145 trainees who completed pre- and post-intervention SP interviews—with participation rates of 52% for physicians and 14% for nurse practitioners. Trainees' scores improved in 8 of 11 coded behaviors (p

Some of the challenges in the delivery of high-quality end-of-life care in the ICU include the variability in the characteristics of patients with certain illnesses and the practice of critical care by different specialties.We examined whether ICU attending specialty was associated with quality of end-of-life care by using data from a clustered randomized trial of 14 hospitals. Patients died in the ICU or within 30 h of transfer and were categorized by specialty of the attending physician at time of death (medicine, surgery, neurology, or neurosurgery). Outcomes included family ratings of satisfaction, family and nurse ratings of quality of dying, and documentation of palliative care in medical records. Associations were tested using multipredictor regression models adjusted for hospital site and for patient, family, or nurse characteristics.Of 3,124 patients, the majority were cared for by an attending physician specializing in medicine (78%), with fewer from surgery (12%), neurology (3%), and neurosurgery (6%). Family satisfaction did not vary by attending specialty. Patients with neurology or neurosurgery attending physicians had higher family and nurse ratings of quality of dying than patients of attending physicians specializing in medicine (Plt; .05). Patients with surgery attending physicians had lower nurse ratings of quality of dying than patients with medicine attending physicians (Plt; .05). Chart documentation of indicators of palliative care differed by attending specialty.Patients cared for by neurology and neurosurgery attending physicians have higher family and nurse ratings of quality of dying than patients cared for by medicine attending physicians and have a different pattern of indicators of palliative care. Patients with surgery attending physicians had fewer documented indicators of palliative care. These findings may provide insights into potential ways to improve the quality of dying for all patients.ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.

Mechanical ventilation may be lifesaving, but in certain persons, such as those with advanced dementia, it may prolong patient suffering without a clear survival benefit.To describe the use and outcomes of mechanical ventilation and its association with the increasing numbers of intensive care unit (ICU) beds in the United States for patients with advanced dementia residing in a nursing home 120 days before that hospital admission.This retrospective cohort study evaluated Medicare beneficiaries with advanced dementia hospitalized from January 1, 2000, to December 31, 2013, using the Minimum Data Set assessments linked with Medicare part A claims. A hospital fixed-effect, multivariable logistic regression model examined the effect of changes in ICU beds within individual hospitals and the likelihood of receiving mechanical ventilation, controlling for patients' demographic characteristics, function, and comorbidities.Mechanical ventilation.From 2000 to 2013, a total of 635 008 hospitalizations of 380 060 eligible patients occurred (30.5% male and 69.5% female; mean [SD] age, 84.4 [7.4] years). Use of mechanical ventilation increased from 39 per 1000 hospitalizations in 2000 to 78 per 1000 hospitalizations in 2013 (P .001, test of linear trend). As the number of ICU beds in a hospital increased over time, patients with advanced dementia were more likely to receive mechanical ventilation (ie, adjusted odds ratio per 10 ICU bed increase, 1.06; 95% CI, 1.05-1.07). In 2013, hospitals in the top decile in the number of ICU beds were reimbursed $9611.89 per hospitalization compared with $8050.24 per hospitalization in the lower decile (P .001) without an improvement in 1-year mortality (65.2% vs 64.6%; P = 54).Among hospitalized nursing home residents with advanced dementia, we found an increase in the use of mechanical ventilation over time without substantial improvement in survival. This increase in the use of mechanical ventilation was associated with an increase in the number of ICU beds within a hospital.

Little is known about psychiatric illness and utilization of end-of-life care.We hypothesized that preexisting psychiatric illness would increase hospital utilization at end of life among patients with chronic medical illness due to increased severity of illness and care fragmentation.We reviewed electronic health records to identify decedents with one or more of eight chronic medical conditions based on International Classification of Diseases-9 codes. We used International Classification of Diseases-9 codes and prescription information to identify preexisting psychiatric illness. Regression models compared hospital utilization among patients with and without psychiatric illness. Path analyses examined the effect of severity of illness and care fragmentation.Eleven percent of 16,214 patients with medical illness had preexisting psychiatric illness, which was associated with increased risk of death in nursing homes (P = 0.002) and decreased risk of death in hospitals (P 0.001). In the last 30 days of life, psychiatric illness was associated with reduced inpatient and intensive care unit utilization but increased emergency department utilization. Path analyses confirmed an association between psychiatric illness and increased hospital utilization mediated by severity of illness and care fragmentation, but a stronger direct effect of psychiatric illness decreasing hospitalizations.Our findings differ from the increased hospital utilization for patients with psychiatric illness in circumstances other than end-of-life care. Path analyses confirmed hypothesized associations between psychiatric illness and increased utilization mediated by severity of illness and care fragmentation but identified more powerful direct effects decreasing hospital use. Further investigation should examine whether this effect represents a disparity in access to preferred care.

Family-centered outcomes during and after critical illness assess issues that are most important to family members. An understanding of family-centered outcomes is necessary to support the provision of family-centered care and to foster development of interventions to improve care and communication in the ICU.Current family-centered outcomes in critical care include satisfaction with care, including end-of-life care, symptoms of psychological distress, and health-related quality of life. Novel measures include assessments of decisional conflict, decision regret, therapeutic alliance, and caregiver burden, as well as positive adaptations and resilience.Critical illness places a significant burden on family members. A wide variety of family-centered outcomes are available to guide improvements in care and communication. Future research should focus on developing sensitive and responsive measures that capture key elements of the family member experience during and after critical illness.

Importance Parents of children with serious illness, such as cancer, experience high stress and distress. Few parent-specific psychosocial interventions have been evaluated in randomized trials. Objective To determine if individual- or group-based delivery of a novel intervention called Promoting Resilience in Stress Management for Parents (PRISM-P) improves parent-reported resilience compared with usual care. Design, Setting, and Participants This parallel, phase 2 randomized clinical trial with enrollment from December 2016 through December 2018 and 3-month follow-up was conducted at Seattle Children’s Hospital. English-speaking parents or guardians of children who were 2 to 24 years old, who had received a diagnosis of a new malignant neoplasm 1 to 10 weeks prior to enrollment, and who were receiving cancer-directed therapy at Seattle Children’s Hospital were included. Parents were randomized 1:1:1 to the one-on-one or group PRISM-P intervention or to usual care. Data were analyzed in 2019 (primary analyses from January to March 2019; final analyses in July 2019). Interventions The PRISM-P is a manualized, brief intervention targeting 4 skills: stress management, goal setting, cognitive reframing, and meaning making. For one-on-one delivery, skills were taught privately and in person for 30 to 60 minutes approximately every other week. For group delivery, the same skills were taught in a single session with at least 2 parents present. Main Outcomes and Measures Participants completed patient-reported outcome surveys at enrollment and at 3 months. Linear regression modeling evaluated associations in the intention-to-treat population between each delivery format and the primary outcome (Connor-Davidson Resilience Scale scores, ranging from 0 to 40, with higher scores reflecting greater resilience) and secondary outcomes (benefit finding, social support, health-related quality of life, stress, and distress) at 3 months. Results In total, 94 parents enrolled, were randomized to 1 of the 3 groups, and completed baseline surveys (32 parents in one-on-one sessions, 32 in group sessions, and 30 in usual care). Their median (interquartile range) ages were 35 to 38 (31-44) years across the 3 groups, and they were predominantly white, college-educated mothers. Their children had median (interquartile range) ages of 5 to 8 (3-14) years; slightly more than half of the children were boys, and the most common cancer type was leukemia or lymphoma. One-on-one PRISM-P delivery was significantly associated with improvement compared with usual care in parent-reported outcomes for resilience (β, 2.3; 95% CI, 0.1-4.6;P = .04) and for benefit finding (β, 0.5; 95% CI, 0.2-0.8;P = .001). No significant associations were detected between either platform and other parent-reported outcomes. Conclusions and Relevance When delivered individually, PRISM-P was associated with improved parent-reported resilience and benefit finding. This scalable psychosocial intervention may help parents cope and find meaning after their child receives a diagnosis of a serious illness. Trial Registration ClinicalTrials.gov identifier:NCT02998086

10029 Background: Parents of children with cancer experience significant levels of distress, which may negatively impact surviving patients and family members. Positive psychology interventions have shown promise, but few address the well-being of parents. The objective of this study was to test the efficacy of a resilience intervention, Promoting Resilience in Stress Management-Parent (PRISM-P), among parents of children with cancer. Methods: This study was a phase 2, 1:1:1 RCT. Eligible participants were English-speaking parents of children 2-24 years-old receiving cancer-directed therapy at Seattle Children’s Hospital. PRISM-P is a skills-based program targeting resilience resources. Parents were randomized to usual care (UC), UC plus individual PRISM-P (1:1), or UC plus group PRISM-P (group). Parents completed surveys at baseline and 3 months measuring resilience (primary outcome, 10-item Connor Davidson Resilience Scale (CDRISC)) and other secondary outcomes including stress, social support, and benefit-finding. We performed an intention-to-treat analysis using unadjusted linear mixed-effects modeling to estimate PRISM effects on score change. With n = 25 per arm, we achieved 80% power to detect an effect size (CDRISC change) of 5.1 (Cohen’s d = 0.8) with a type 1 error rate of 0.05. Results: 107 parents enrolled. Of these, 94 (88%) completed baseline surveys and 77 (72%) completed 3 month surveys. Mean (SD) resilience score change in UC, 1:1 and group arms was -2 (3.5), 1 (5.3) and -1 (5.0), respectively. In mixed models, the estimated 1:1 PRISM benefit for resilience score change vs. UC was +2.8 (95% CI: 0.5,5.2, p = 0.02) while there was no evidence of a group benefit (beta 0.4, 95% CI: -2.1, 2.8, p = 0.76.). Models for secondary outcome score change found a PRISM advantage for benefit finding, where the 1:1 vs. UC difference was +0.5 (95% CI: 0.2, 0.8, p < 0.01) and the group vs. UC difference was +0.4 (0.0, 0.7, p = 0.05). Conclusions: Compared to UC, 1:1 PRISM-P was associated with improved resilience change, and both PRISM-P intervention arms were associated with greater benefit-finding. Future studies will explore larger scale efficacy and alternative delivery design. Clinical trial information: NCT02998086.

There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it.

Background The psychosocial function of parents of children with cancer can impact the well-being of the entire family. Resilience resources are likely related to psychosocial outcomes and may be amenable to intervention. We hypothesized that parents with lower resources would report worse outcomes. Methods In the “Understanding Resilience in Parents of Children with Cancer” study, comprehensive surveys were mailed to consecutive, English-speaking parents of children with cancer who were treated at Seattle Children's Hospital and completed therapy between January 1, 2009 and December 31, 2010. Resilience resources were measured by the Connor-Davidson Resilience Scale; outcome measures included psychological distress, health-related behaviors, social and family function, and perceived communication with the medical team. Results Ninety-six parents (86% of contactable) completed the survey. Compared to population norms, enrolled parents had lower resilience resources, higher psychological distress, and more commonly reported binge drinking. Conversely, they reported higher social support and family adaptability (P

14 Background: Studies have described financial burden during and after cancer treatment, but little data are available on financial burden to patients and caregivers at end of life. We conducted a qualitative study with bereaved caregivers and discussed the impact of cancer-associated medical and nonmedical costs on family finances. Methods: From October-December 2017, we audio-recorded semi-structured phone interviews with 35 adults who were primary caregivers for a family member who died with cancer (July-December 2016). We asked about ability to meet costs of care. Drawing from previous studies, we defined substantial financial burden as incurring debt, selling assets or draining savings to meet health care costs. Two analysts coded transcripts using qualitative content analysis and summarized results as major themes. Results: Patients ranged from 30-88 years old, caregivers 34-85. Most caregivers were white (91%), female (63%) and spouses (89%). Ten patients (29%) were insured commercially, 24 (69%) had Medicare, and one (2%) had Medicaid. Ten caregivers (29%) reported substantial financial burden, irrespective of patients’ insurance coverage. Issues associated with substantial financial burden were: 1) insurance hurdles: “my husband’s dying and…I have to run interference with insurance companies, which is frustrating;” 2) limited financial resources: “It is hard when…you really don't have a lot of savings because…you never really made a lot of money” and 3) financial burden that continues after the patient’s death : “I went broke, basically, looking after my parents.” “We lost two incomes and we had to live on our savings.” Three other caregivers noted their family did not experience financial burden because they switched health insurance plans or had a supplemental insurance plan. Conclusions: In this pilot study of caregivers of advanced cancer patients, a substantial portion of commercially insured patients and Medicare enrollees with limited savings and income reported financial burden associated with cancer treatment and end-of-life care that persisted after the patient’s death. Future research is needed to determine best ways to mitigate financial burden among patients and their survivors.

65 Background: Polypharmacy, or the concurrent use of multiple medications, may expose patients to drug-drug interactions and excessive costs. There are limited data on polypharmacy for commercially insured older adults, primarily Medicare Advantage patients, that may have better access to medication management services than Medicare fee-for-service patients. We characterized medication use and out-of-pocket (OOP) medication costs in the last month of life among patients age 65+ who did not enroll in hospice to examine medication use in this population. Methods: We linked enrollment and claims records from two regional commercial insurers to Surveillance, Epidemiology, and End Results (SEER) Cancer Surveillance System and Washington State Cancer Registry records for patients diagnosed with a stage IV malignancy in Washington State between January 1, 2007-December 31, 2016. We calculated OOP costs as the difference between allowed and paid claim amounts and adjusted OOP costs (aOOP) for inflation to 2017 dollars. Results: Among 345 patients with medication claims in their last month, 156 (45%) had a chemotherapy claim. Average age was 74 years (range 65-95), 55% (n = 190) were male, and 150 had lung cancer (44%). Patients averaged 7.7 medication claims (range 1-50); 151 (44%) had 1-4, 99 (29%) had 5-9, and 95 (27%) had 10+. Common symptom-related medications were opioids, benzodiazepines, anti-emetics. Chemotherapy was associated with higher odds of 10+ prescriptions (OR 1.38, 95% CI 1.26-1.51). Excluding four patients with aOOP chemotherapy costs > $14,000, average aOOP costs were $101 for chemotherapy claims (range $0-$8957) and $33 for non-chemotherapy claims ($0-$1993). Costs for those in the highest quartile ranged from $320-$8957 for chemotherapy claims and $100-1993 for non-chemotherapy claims. Conclusions: Most subjects had at least five medication claims in their last 30 days. One-quarter had 10+ claims, which was associated with chemotherapy receipt. Hospice enrollment could reduce OOP costs, as hospice provides symptom-related medications. Interventions facilitating hospice enrollment and reducing chemotherapy use may minimize polypharmacy and cost burden for patients and families.

The need for palliative care in COPD is under-recognised and unaddressed at hospital discharge http://ow.ly/P1YbQ

Rationale: Although expert communication between intensive care unit clinicians with patients or surrogates improves patient- and family-centered outcomes, fellows in critical care medicine do not feel adequately trained to conduct family meetings.

Cost savings associated with palliative care (PC) consultation have been demonstrated for total hospital costs and daily costs after PC involvement. This analysis adds another approach by examining costs stratified by hospital length of stay (LOS).To examine cost savings for patients who receive PC consultations during short, medium, and long hospitalizations.Data were analyzed for 1815 PC patients and 1790 comparison patients from two academic medical centers between 2005 and 2008, matched on discharge disposition, LOS category, and propensity for a PC consultation. We used generalized linear models and regression analysis to compare cost differences for LOS of 1 to 7 days (38% of consults), 8 to 30 days (48%), and30 days (14%). Comparisons were done for all patients in both hospitals (n=3605) and by discharge disposition: survivors (n=2226) and decedents (n=1379); analyses were repeated for each hospital.Significant savings per admission were associated with shorter LOS: For stays of 1 to 7 days, costs were lower for all PC patients by 13% ($2141), and for survivors by 19.1% ($2946). For stays of 8 to 30 days, costs were lower for all PC patients by 4.9% ($2870), and for survivors by 6% ($2487). Extrapolating the per admission cost across the PC patient groups with lower costs, these programs saved about $1.46 million for LOS under a week and about $2.5 million for LOS of 8 to 30 days. Patients with stays30 days showed no differences in costs, perhaps due to preferences for more aggressive care for those who stay in the hospital more than a month.Cost savings due to PC are realized for short and medium LOS but not stays30 days. These findings suggest savings can be achieved by earlier involvement of palliative care, and support screening efforts to identify patients who can benefit from PC services early in an admission.

BACKGROUND Blood transfusions are common during hematopoietic stem cell transplantation (HSCT) and may contribute to lung injury.

Better clinician understanding of patients' end-of-life treatment preferences has the potential for reducing unwanted treatment, decreasing health care costs, and improving end-of-life care.To investigate patient preferences for life-sustaining therapies, clinicians' accuracy in understanding those preferences, and predictors of patient preference and clinician error.This was an observational study of 196 male veterans with chronic obstructive pulmonary disease who participated in a randomized trial. Measures included patients' preferences for mechanical ventilation (MV) and cardiopulmonary resuscitation (CPR) if needed in their current state of health, and outpatient clinicians' beliefs about those preferences.Analyses were based on 54% of participants in the trial who had complete patient/clinician data on treatment preferences. Patients were more receptive to CPR than MV (76% vs. 61%; P0.001). Preferences for both treatments were significantly associated with the importance patients assigned to avoiding life-sustaining therapies during the final week of life (MV: b=-0.11, P0.001; CPR: b=-0.09, P=0.001). When responses were dichotomized (would/would not want treatment), clinicians' perceptions matched patient preferences in 75% of CPR cases and 61% of MV cases. Clinician errors increased as patients preferred less aggressive treatment (MV: b=-0.28, P0.001; CPR: b=-0.32, P0.001).Clinicians erred more often about patients' wishes when patients did not want treatment than when they wanted it. Treatment decisions based on clinicians' perceptions could result in costly and unwanted treatments. End-of-life care could benefit from increased clinician-patient discussion about end-of-life care, particularly if discussions included patient education about risks of treatment and allowed clinicians to form and maintain accurate impressions of patients' preferences.

Extracorporeal life support (ECLS) is an advanced form of life-sustaining therapy that creates stressful dilemmas for families. In May 2009, Seattle Children's Hospital (SCH) implemented a policy to involve the Pediatric Advanced Care Team (PACT) in all ECLS cases through automatic referral.Our aim was to describe PACT involvement in the context of automatic consultations for ECLS patients and their family members.We retrospectively examined chart notes for 59 consecutive cases and used content analysis to identify themes and patterns.The degree of PACT involvement was related to three domains: prognostic uncertainty, medical complexity, and need for coordination of care with other services. Low PACT involvement was associated with cases with little prognostic uncertainty, little medical complexity, and minimal need for coordination of care. Medium PACT involvement was associated with two categories of cases: 1) those with a degree of medical complexity but little prognostic uncertainty; and 2) those that had a degree of prognostic uncertainty but little medical complexity. High PACT involvement had the greatest medical complexity and prognostic uncertainty, and also had those cases with a high need for coordination of care.We describe a framework for understanding the potential involvement of palliative care among patients receiving ECLS that explains how PACT organizes its efforts toward patients and families with the highest degree of need. Future studies should examine whether this approach is associated with improved patient and family outcomes.

The burden of post-traumatic stress disorder (PTSD) symptoms may be associated with worse outcomes after transplantation. Little is known about the prevalence and correlates of PTSD symptoms in lung transplant recipients.We conducted a cross-sectional study of lung transplant recipients between April 2008 and February 2010 at a single center. The PTSD Checklist was used to determine the burden of PTSD symptomatology (total score) and percent of subjects with a provisional PTSD diagnosis (validated algorithms). We assessed the relationship between PTSD symptom burden and patient characteristics with multivariable logistic modeling.We enrolled 210 subjects (response rate 91%). Most patients were female (50%), and Caucasian (89%). The median age was 59 (interquartile range [IQR] 48 to 63) years and the median time between transplant and follow-up was 2.4 (IQR 0.7 to 5.3) years. Clinically significant PTSD symptomatology was observed in 12.6% (8.4% to 17.9%) of subjects. Subjects were more likely to endorse symptoms of re-experiencing (29.5%) and arousal (33.8%) than avoidant symptoms (18.4%). Multivariable linear regression showed higher PTSD symptom scores among recipients who were: younger (p0.001); without private insurance (p = 0.001); exposed to trauma (p0.001); or diagnosed with bronchiolitis obliterans syndrome (p = 0.005).Overall prevalence of PTSD (12.6%) in our study was two times higher than the general population. Patient characteristics found to be associated with an increased burden of PTSD symptoms may be useful to consider in future interventions designed to reduce this comorbidity.

Background The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods An e-mail questionnaire was sent to members of the American College of Chest Physicians' Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and families. Conclusions Physicians providing care to lung transplant candidates reported considerable barriers to the delivery and acceptance of palliative care and identified specific strategies to improve palliative care for lung transplant candidates.