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Early identification of kidney dysfunction in patients with advanced heart failure is crucial for timely interventions. In addition to elevations in serum creatinine, kidney dysfunction encompasses inadequate maintenance of sodium and volume homeostasis, retention of uremic solutes, and disrupted endocrine functions. Hemodynamic derangements and maladaptive neurohormonal upregulations contribute to fluctuations in kidney indices and electrolytes that may recover with guideline-directed medical therapy. Quantifying the extent of underlying irreversible intrinsic kidney disease is crucial in predicting whether optimization of congestion and guideline-directed medical therapy can stabilize kidney function. This scientific statement focuses on clinical management of patients experiencing kidney dysfunction through the trajectory of advanced heart failure, with specific focus on (1) the conceptual framework for appropriate evaluation of kidney dysfunction within the context of clinical trajectories in advanced heart failure, including in the consideration of advanced heart failure therapies; (2) preoperative, perioperative, and postoperative approaches to evaluation and management of kidney disease for advanced surgical therapies (durable left ventricular assist device/heart transplantation) and kidney replacement therapies; and (3) the key concepts in palliative care and decision-making processes unique to individuals with concomitant advanced heart failure and kidney disease.

Background: Celiac plexus block has been commonly utilized for the treatment of chronic pancreatitis-associated abdominal pain. Prospective studies suggest efficacy in 30 to 50% of patients, although no randomized sham-controlled trials have been performed. The objective of this study is to assess the effect of endoscopic ultrasound (EUS)-guided celiac plexus block on abdominal pain in patients with documented chronic pancreatitis., Methods: This is a two-arm randomized sham-controlled trial with blinded evaluators. The study will be conducted at multiple academic sites in the United States who are members of the United States Pancreatic Disease Study Group (USPG). Patients referred for EUS to exclude chronic pancreatitis as a cause of abdominal pain as well as those with established painful chronic pancreatitis undergoing EUS for another indication will be eligible. At the time of EUS with confirmation of chronic pancreatitis by standard EUS diagnostic criteria, patients will be randomized to either celiac plexus block or sham whereby an anesthetic and steroid combination will be injected into the celiac plexus or saline will be injected into the gastric lumen with the same type of needle as used for celiac plexus block, respectively. The main outcome measure will be a 50% reduction in abdominal pain using the Brief Pain Inventory Short Form (BPI-SF) at 1 month post-intervention. A number of secondary outcomes will be measured including visual analog scale (VAS), Comprehensive Pain Assessment Tool Short Form (COMPAT-SF) pain scores, and quality of life using a pancreas-specific validated measure (PANQOLI)., Discussion: In this study, the effect of celiac plexus block on abdominal pain in patients with chronic pancreatitis will be compared to a sham intervention. This randomized trial will offer a definitive assessment of the role of celiac plexus block for the treatment of abdominal pain in this setting. TRIAL REGISTRATION {2}: ClinicalTrials.gov NCT06178315. Registered on December 21, 2023., (© 2024. The Author(s).)

Community-based palliative care (CBPC) models address the growing needs of patients and caregivers with chronic and serious illnesses. From pediatrics to geriatrics, individuals prefer to receive care within their local community and at home. Delivering care at the community level and within the home improves health outcomes, reduces disparities, and supports local economic activity. Various models of CBPC have developed through partnerships with existing services, such as home health agencies, but ongoing challenges and barriers exist for further expansion of specialty palliative care. Advanced practice registered nurses increasingly manage chronic and serious illnesses and are essential for all health care teams, particularly for CBPC. As trusted providers within the community, advanced practice registered nurses create lasting relationships that allow for meaningful exchanges with patients and caregivers. This article reviewed the concept and features of CBPC offered within the United States and describes an advanced practice registered nurse-led embedded palliative care program for advanced lung disease., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Fundamental to the quality of life is assisting patients in relieving pain including at the end of life. Compassionate, effective, evidence-based pain care for the dying improves the quality of life for patients and may reduce distress and complicated bereavement in the loved ones witnessing this death. However, efforts designed to mitigate the consequences of the opioid epidemic have seriously compromised pain care at the end of life. This has created an urgent need to focus on the barriers to relief, and solutions necessary to provide safe and effective pain and symptom management in this population. To that end, a committee of experts was convened by the American Society for Pain Management Nursing and the Hospice and Palliative Nursing Association. These experts reviewed the current literature, developed a draft position statement which underwent consecutive revisions. This statement was then endorsed by the respective organizations. Elucidation of barriers to effective pain control in advanced disease allows targeted interventions; including those related to clinical care, education, accessibility, and research. As nurses, we must continuously advocate for humane and dignified care, promoting ethical, effective pain and symptom management at the end of life for all., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

Background: Little is known about the burden of illness experienced by people with cystic fibrosis (pwCF) since the advent of CF transmembrane conductance regulator (CFTR) modulator therapies. Studies that characterize the nature of illness burden are needed to inform the development and implementation of palliative care programs that can serve this population and address quality of life concerns., Methods: Adults with CF treated at five U.S. CF centers were surveyed to obtain baseline data for the Improving Life with CF primary palliative care implementation trial. Consenting patients completed the Integrated Palliative Care Outcome Scale (IPOS), a multidimensional measure of unmet needs for palliative care. Sociodemographic and clinical information was also obtained. The associations among these variables were examined through bivariate and multivariable analyses., Results: Among 256 adults, the most distressing symptoms included not feeling "at peace", communication difficulties with family/friends, anxiety over illness or its treatment, and a lack of energy. In the multivariable analyses, CFTR modulator use was associated with lower IPOS total and physical symptoms scores; female sex and increased hospitalizations were associated with higher scores. Increased age and history of distal intestinal obstructive syndrome were associated with higher IPOS physical symptoms scores., Conclusions: These findings illuminate the nature of illness burden for pwCF in the era of CFTR modulator therapies. Although illness burden is positively affected by modulator therapy, there is a continuing need for palliative care to address physical, emotional, and spiritual distress, and the communication and practical needs experienced by adults with CF., Competing Interests: Declaration of Competing Interest AMG reports personal fees from the Belgian Cystic Fibrosis Foundation/King Baudouin Foundation; grants, personal fees, and travel reimbursement from the Cystic Fibrosis Foundation; grants from the Dutch Cystic Fibrosis Foundation; travel reimbursement from the European Cystic Fibrosis Society; travel reimbursement from the French Cystic Fibrosis Society; personal fees from the Italian Cystic Fibrosis Research Foundation; grants from the National Heart, Lung, and Blood Institute; personal fees from the Saudi Pediatric Pulmonology Association; grants and personal fees from Vertex Pharmaceuticals; and personal fees from Virginia Commonwealth University. RP reports royalties from Oxford University Press and UpToDate, honorarium from the 2023 Sapporo Conference on Palliative and Supportive Care, and travel reimbursement from the 2023 Sapporo Conference on Palliative and Supportive Care. JW reports support from Cystic Fibrosis Foundation Data Safety Monitoring Board and a Cystic Fibrosis Foundation Center grant. DF reports grant funding and travel reimbursement from the Cystic Fibrosis Foundation outside the submitted work. ES reports research funding from the National Institutes of Health (NIH, National Center for Complementary and Integrative Health, National Institute of Neurological Disorders and Stroke), Veterans Health Administration (Headache Centers of Excellence), and the American Heart Association, as well as fees for consulting from GlaxoSmithKline, Theranica, Abbvie, and Click Therapeutics. RWL reports grants to institution, consultant fees, advisory board participation, and travel reimbursement from Vertex Pharmaceuticals and grants to the institution from the Cystic Fibrosis Foundation. PW reports grant funding and travel reimbursement from the Cystic Fibrosis Foundation. BMO reports grant funding and fees as a consultant from the Cystic Fibrosis Foundation and fees as a consultant from Vertex Pharmaceuticals. LD reports royalties from UpToDate and research funding from NIH (National Institute of Nursing Research). No other authors have declarations of interest., (Copyright © 2023 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.)

Cancer-related pain affects a large proportion of all patients with cancer yet remains inadequately managed, particularly among patients from certain racialized backgrounds. Recently, there has been increased research and clinical interest in the use of medical cannabis for cancer pain management, including its potential to ameliorate race-based disparities in cancer pain control. Although medical cannabis is not currently a US Food and Drug Administration-approved treatment option for cancer-related pain, many oncologists discuss and recommend its use with their patients, underscoring the need for researchers and clinicians to proactively identify barriers to cannabis for cancer pain management that may disproportionately affect patients from certain racial groups. In this commentary, we highlight challenges that patients from racialized backgrounds may face when incorporating cannabis into their palliative care regimens and discuss opportunities for researchers and clinicians to address these challenges should medical cannabis become a recommended treatment option for cancer pain management. In particular, we identify challenges at the structural (eg, lack of insurance coverage), clinician (eg, racialized stereotypes regarding addiction and pain), and individual (eg, internalized stigma) levels and emphasize the importance of multilevel approaches in combating these challenges as the evidence base regarding medical cannabis and its potential harms and therapeutic benefits continues to accumulate., (Published by Oxford University Press 2024.)

Background: The Fontan operation is used to palliate single ventricle congenital heart defects (CHD) but poses significant morbidity and mortality risks. We present the design, planned analyses, and rationale for a long-term Fontan cohort study aiming to examine the association of patient characteristics at the time of Fontan with post-Fontan morbidity and mortality., Methods and Results: We used the Pediatric Cardiac Care Consortium (PCCC), a US-based, multicenter registry of pediatric cardiac surgeries to identify patients who underwent the Fontan procedure for single ventricle CHD between 1 and 21 years of age. The primary outcomes are in-hospital Fontan failure (death or takedown) and post-discharge mortality through 2022. A total of 1461 (males 62.1%) patients met eligibility criteria and were included in the analytical cohort. The median age at Fontan evaluation was 3.1 years (IQR: 2.4-4.3). While 95 patients experienced in-hospital Fontan failure (78 deaths and 17 Fontan takedown), 1366 (93.5%) survived to discharge with Fontan physiology and formed the long-term analysis cohort. Over a median follow-up of 21.2 years (IQR: 18.4-24.5) 184 post-discharge deaths occurred. Thirty-year post Fontan survival was 75.0% (95% CI: 72.3%-77.8%) for all Fontan types with higher rates for current techniques such as lateral tunnel and extracardiac conduit 77.1% (95% CI: 73.5-80.8)., Conclusion: The PCCC Fontan study aims to identify predictors for post-Fontan morbidity and mortality, enabling risk- stratification and informing surveillance practices. Additionally, the study may guide therapeutic interventions aiming to optimize hemodynamics and enhance Fontan longevity for individual patients., Competing Interests: Disclosure The authors have no relevant financial relationships or conflicts of interest to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: We sought to measure frequency of achieving an optimal outcome after stage 1 palliation (S1P) for hypoplastic left heart syndrome and variants, determine factors associated with optimal outcomes, and compare outcomes after stage 2 palliation (S2P) using the National Pediatric Cardiology Quality Improvement Collaborative database (2008-2016)., Methods and Results: This is a retrospective cohort study with optimal outcome defined a priori as meeting all of the following: (1) discharge after S1P in <19 days (top quartile), (2) no red flag or major event readmissions before S2P, and (3) performing S2P between 90 and 240 days of age. Optimal outcome was achieved in 256 of 2182 patients (11.7%). Frequency varied among centers from 0% to 25%. Factors independently associated with an optimal outcome after S1P were higher gestational age (odds ratio [OR], 1.1 per week [95% CI, 1.0-1.2]; P =0.02); absence of a genetic syndrome (OR, 2.5 [95% CI, 1.2-5]; P =0.02); not requiring a post-S1P catheterization (OR, 2.7 [95% CI, 1.5-4.8]; P =0.01), intervention (OR, 1.5 [95% CI, 1.1-2]; P =0.006), or a procedure (OR, 4.5 [95% CI, 2.8-7.1]; P <0.001) before discharge; and not having a post-S1P complication (OR, 2.7 [95% CI, 1.9-3.7]; P <0.001). Those with an optimal outcome after S1P had improved S2P outcomes including shorter length of stay, less ventilator days, shorter bypass time, and fewer postoperative complications., Conclusions: Identifying patients at lowest risk for poor outcomes during the home interstage period could shift necessary resources to those at higher risk, alter S2P postoperative expectations, and improve quality of life for families at lower risk.

Context: Medical cannabis is increasingly considered for palliation of pain, nausea/vomiting, anorexia, and other symptoms., Objectives: We aimed to determine whether training in hospice and palliative medicine (HPM) adequately prepares fellows to counsel patients about medical cannabis., Methods: A previously validated questionnaire was adapted for HPM fellows. Domains included fellows' practices recommending cannabis and their knowledge of its effectiveness and risks compared with standard treatments. U.S. HPM fellowships were sent surveys in 2022 and 2023., Results: Forty six programs participated, 123 fellows responded (response rate of 42%) including 69% female; 55% White, and 28% Asian. Of respondents, 65% reported receiving formal training regarding medical cannabis; 57% reported discussing medical cannabis with over five patients; 23% recommended medical cannabis to more than five patients in the preceding year. Only 19%, however, felt sufficiently informed to issue cannabis-related recommendations. HPM fellows with prior training were not more likely to feel sufficiently informed to discuss cannabis (RR: 1.17; 95% CI: 0.82-1.66) or to recommend cannabis to patients (RR: 2.05, 95% CI: 0.89-4.71). Fellows rate cannabis as equally or more effective than conventional treatments for the following symptoms: anorexia/cachexia (63%), nausea/vomiting (43%), pain (25%), and neuropathic pain (21%)., Conclusion: Most HPM fellows report formal training in the use of medical cannabis. Over half of trainees reported discussing medical cannabis with patients, but few considered themselves sufficiently informed to make cannabis-related clinical recommendations. These results suggest both a need for expanded high-quality evidence for medical cannabis in palliative care and for improved formal education for HPM fellows., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: The objective of this study was to compare the attitudes and beliefs of PCU physicians leaders in the United States versus Canada regarding the subcutaneous method in the administration of medications and hydration in order to gain a better understanding as to why variations in practice exist., Methods: This survey trial took place from November 2022 to May 2023. The MD Anderson Cancer Center institutional review board in Houston, Texas, approved this study. The participants were the physician leaders of the acute palliative care units (PCUs) in the United States and Canada. The survey comprised questions formulated by the study investigators regarding the perceived comfort, efficiency, and preference of using the subcutaneous versus the intravenous method. The consent form and survey links were emailed to the participants., Results: Sixteen PCUs were identified in the United States and 15 PCUs in Canada. Nine US and 8 Canadian physicians completed the survey. Physicians in Canada were more likely to use the subcutaneous route for administering opioids, antiemetics, neuroleptics, and hydration. They preferred subcutaneous over intravenous or intramuscular routes ( p = 0.017). Canadian physicians felt their nursing staff was more comfortable with subcutaneous administration ( p = 0.022) and that it was easier to administer ( p = 0.02). US physicians felt the intravenous route was more efficient ( p = 0.013)., Significance of Results: The study results suggest that exposure to the subcutaneous route influences a physician's perception. Further research is needed to explore ways to incorporate its use to a greater degree in the US healthcare system.

Persons with heart failure (HF) often suffer from poor symptom control, decreased quality of life, and poor communication with their health care providers. These needs are particularly acute in advanced HF, a leading cause of death in the United States. Palliative care, when offered alongside HF disease management, offers improved symptom control, quality of life, communication, and caregiver satisfaction as well as reduced caregiver anxiety. The dynamic nature of the clinical trajectory of HF presents distinct symptom patterns, changing functional status, and uncertainty, which requires an adaptive, dynamic model of palliative care delivery. Due to a limited specialty-trained palliative care workforce, patients and their caregivers often cannot access these benefits, especially in the community. To meet these needs, new models are required that are better informed by high-quality data, engage a range of health care providers in primary palliative care principles, and have clear triggers for specialty palliative care engagement, with specific palliative interventions tailored to patient's illness trajectory and changing needs., Competing Interests: Funding Support and Author Disclosures Dr Gelfman has received support from the Claude D. Pepper Older Americans Independence Center at the Icahn School of Medicine at Mount Sinai (5P30AG028741) and the Sojourns Scholars Leadership Award from the Cambia Health Foundation. Dr Ogunniyi has received institutional research support grants from AstraZeneca, Boehringer Ingelheim, Cardurion Pharmaceuticals, and Pfizer, outside of the submitted work. Dr Kavalieratos has served as a member of the Board of Directors of the American Academy of Hospice and Palliative Medicine. Dr Allen has received research funding from the National Institutes of Health and Patient-Centered Outcomes Research Institute; and has received consulting fees from ACI Clinical, American Heart Association, Boston Scientific, Cytokinetics, Medscape, Novartis, Quidel, and UpToDate. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose., (Published by Elsevier Inc.)

Rationale & Objective: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population., Study Design: National explanatory sequential mixed methods study including an online survey and semistructured interviews., Setting & Participants: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022., Analytical Approach: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data., Results: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care., Limitations: Potential selection bias., Conclusions: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them., Plain-Language Summary: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population., (Copyright © 2023 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

Objectives: Older adults with psychiatric illnesses often have medical comorbidities that require symptom management and impact prognosis. Geriatric psychiatrists are uniquely positioned to meet the palliative care needs of such patients. This study aims to characterize palliative care needs of geriatric psychiatry patients and utilization of primary palliative care skills and subspecialty referral among geriatric psychiatrists., Methods: National, cross-sectional survey study of geriatrics psychiatrists in the United States., Results: Respondents (n = 397) reported high palliative care needs among their patients (46-73% of patients). Respondents reported using all domains of palliative care in their clinical practice with varied comfort. In multivariate modeling, only frequency of skill use predicted comfort with skills. Respondents identified that a third of patients would benefit from referral to specialty palliative care., Conclusions: Geriatric psychiatrists identify high palliative care needs in their patients. They meet these needs by utilizing primary palliative care skills and when available referral to subspecialty palliative care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.

Context/objectives: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations., Methods: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions., Results: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase., Conclusion: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Palliative care is an effective way to alleviate suffering and improve quality of life in older adults with end stage kidney disease (ESKD). The purpose of this scoping review was to identify gaps in available evidence about current and future needs for palliative care in community-residing older adults living in Thailand with advanced chronic kidney disease. Four essential elements (community, education, research, and nursing practice) were found related to older adults with ESKD, their families, and limited graduate palliative care education. Results support the need for graduate nursing education to meet the needs of a growing ESKD population in Thailand and other countries, including the United States., Competing Interests: The authors reported no actual or potential conflict of interest in relation to this nursing continuing professional development (NCPD) activity., (Copyright© by the American Nephrology Nurses Association.)

Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Main Outcomes and Measures: Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Results: Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p  = 0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p  < 0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p  = 0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Conclusions and Relevance: Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.

Context: Written Crisis Standards of Care guidelines have been published federally in the United States for several decades to assisted in planning for a variety of disasters, and planning documents exist in most states. Federal and state crisis planning guidelines, both before and during the early COVID pandemic, focused on saving the most lives. Palliative care (PC) and hospice shortages were exacerbated by the COVID pandemic but recognized late and incompletely., Objectives: 1) Quantify the number of state crisis standard planning documents that include recognition of potential PC and hospice crisis needs in a pandemic. 2) Assess the range of practical plans in existing state Crisis Standards of Care plans. 3) Outline elements of recommendations from existing guidelines and literature., Methods: Internet searches for state-based "crisis standards of care" completed and results categorized regarding PC and hospice planning as: 1) absent, 2) mentioned only in relation to critical care triage, 3) described only in general principles, 4) describing potential concrete plans to address PC and hospice needs., Results: Of the 50 states and Washington, DC, 45 states have electronically available "crisis standards of care" or emergency preparedness documents; 35 of these were written or updated since 2020. Only 20 states mention any concrete aspects of planning for potential palliative care or hospice service shortages. Guidelines most often involved alternate care sites, protective equipment, and specialist resources. Visitation policy was rarely mentioned., Conclusions: Concrete planning for PC and hospice needs in state crisis planning occurs in less than half of state documents, even three years after the start of this pandemic. Failure to address these needs will result in avoidable suffering for patients in a wide range of settings. It is important to identify and address gaps before the next disaster., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

There is a lack of research focused on understanding the different characteristics and healthcare utilization of metastatic breast cancer patients by palliative care use. This study aims to investigate trend of in-patient palliative care and its association with healthcare utilization among hospitalized metastatic breast cancer patients in the US. National Inpatient Sample (NIS) was used to identify nationwide metastatic breast cancer patients (n = 5209, weighted n = 25,961) from 2010 to 2014. We examined the characteristics of the study sample by palliative care and its association with healthcare utilization, measured by discounted hospital charges and length of stay. Multivariable survey regression models were used to identify predictors. Among 26,961 breast cancer patients, 19.0% had palliative care. Percentage of receiving palliative care during the period were gradually increased. Social factors including race, insurance types were also associated with a receipt of palliative care. Survey linear regression results showed that patients with palliative care were associated with 31% lower hospital charges, however, length of stays were not significantly associated. This study found evidence of who was associated with the receipt of palliative care and its relationship with healthcare utilization. This study also emphasizes the importance of receiving palliative care in patients with breast cancer, paving the way for future research into ways to improve palliative care in cancer patients. This study also found social differences and gave evidence of programs that could be used to help vulnerable groups in future health policy decisions., (© 2023. The Author(s).)

Background: The COVID-19 pandemic has harmed the provision of palliative care (PC) services for women with breast cancer due to all the restrictions that came along with the virus., Objective: To map the available evidence on the situation of PC in breast cancer during the COVID-19 pandemic., Methods: A scoping review was carried out based on the methodology proposed by the Joanna Briggs Institute. The search was conducted in nine databases, one electronic repository, and one library, using controlled vocabularies., Results: Twenty-nine articles and seven documents were included. The majority (11.4% each) were published in the United Kingdom, Italy, and the United States, 38.9% addressed palliative radiotherapy (RT), and 47.2% consisted of recommendations. From the content analysis, five categories were obtained focused on the recommendations on changes in palliative treatment guidelines and the response of PC teams to the evolving crisis., Conclusions: The evidence pointed to the management of general PC, palliative RT, palliative chemotherapy, management of metastatic breast cancer, and use of technologies in palliative care. No recommendations were found to manage frequent symptoms in PC, indicating the need to develop primary studies that investigate these aspects in detail in this vulnerable group., Implications: The results contained in this document can provide professionals working in this field of care with a global view of how other teams have dealt with the pandemic, thereby identifying the best guidelines to apply in their reality, taking into account the clinical and social situation of each patient.

Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Setting/Subjects: Patients receiving outpatient palliative care ( n  = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. Measurements: We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Results: Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p  = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p  = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p  = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.

Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define neonatal serious illness as a foundational concept for neonatal palliative care. Design: Survey study. Setting/Subjects: Practitioners in the United States with expertise in neonatal serious illness. Measurements: Participants ranked 15 components according to how important each would be to include in a conceptual definition of neonatal serious illness. Based on rankings and free text responses, a working definition was created and a follow-up survey was circulated. Participants then ranked the extent to which the proposed definition comprehensively defines neonatal serious illness. The definition was further refined based on responses to the second survey. Results: Eighty experts responded to our first survey. Definition components ranked as most important included "high risk of short term mortality" and "results in shortened lifespan." Analysis of free text responses revealed additional components viewed as important. We developed the following conceptual definition: "Neonatal serious illness 1) carries a high risk of short term mortality OR lifelong medical complexity with probable shortened lifespan, 2) may involve substantial prognostic uncertainty (especially in regard to neurodevelopment) that complicates medical decision-making, and 3) significantly impacts the patient and family's life now or in the future with strain related to treatments and care." Conclusion: We believe our definition of neonatal serious illness will facilitate future study essential to the advancement of care for this population.

Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limiting conditions. There is very limited research on utilization of an inpatient hospice facility for end-of-life care if a pediatric-specific facility is available. We examined changes in family utilization of inpatient hospice services with the availability of an inpatient pediatric hospice facility (PHF). Methods: We conducted a retrospective cohort study with data collected on location of end-of-life care and death five years prior to and five years following the opening of a PHF that receives referrals from a large children s hospital in United States. Two data sources from the hospice organization were used: (1) a dataset on origins and outcomes of referrals to pediatric inpatient hospice care and (2) a dataset on location of death for all pediatric patients who had any contact with the hospice system. Chi-square analyses were conducted to assess the associations between the PHF opening and referral outcomes and location of death. Results: Significant results were found with respect to both referral outcomes and location of death. Engagement in inpatient hospice care increased between 2- and 10-fold following the opening of the inpatient PHF. The percent of patients who died in an inpatient hospice unit also increased significantly with the opening of the pediatric facility. Discussion: Results of this study show that providers are more likely to refer, and families are more likely to use inpatient hospice services when pediatric facilities are available. These results are important for establishing an evidence base in support for increasing access to PHFs.

Background: Interstitial lung disease (ILD) results in profound symptom burden and carries high mortality. Palliative care (PC) is dedicated to improving quality of life in patients with serious illness. Early PC provision improves rates of advance care planning and symptom management in patients with ILD., Research Question: What are the current perspectives on PC among ILD providers, and what are the barriers to PC in ILD specialty centers?, Study Design and Methods: A 24-question electronic survey was disseminated to providers at the 68 Pulmonary Fibrosis Foundation Care Centers across the United States from October 2020 to December 2020., Results: The survey was completed by 128 participants representing all 68 Pulmonary Fibrosis Foundation Care Center Network sites. Most respondents were physicians. Most providers exhibit good knowledge of, feel comfortable assessing a patient's readiness for, and agree with the need for PC for patients with ILD. Providers are most likely to refer to PC at objective disease and/or symptomatic progression rather than at initial diagnosis. In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack local PC availability (P < .01) and less likely to feel comfortable discussing prognosis/disease trajectory (P = .03) or feel it is important to address advance directives in ILD clinic (P = .02). There is a lack of standardized measures used to assess specific symptoms, overall symptom burden, or health-related quality of life across institutions. Discordance exists between self-reported and actual access to local inpatient and outpatient PC services., Interpretation: Most ILD providers use PC and are comfortable discussing PC. Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of systematic tools to assess symptom burden, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery., (Copyright © 2022 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Context: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management., Objective: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies., Methods: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment., Conclusions: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Telehealth was expanded worldwide during the COVID-19 pandemic to deliver essential care remotely to patients, including those receiving palliative care. Bipartisan groups of politicians in the United States call for continuing the expanded Medicare coverage of telehealth services beyond the pandemic period. The aim was to understand telehealth's benefits and risks to hospice and palliative care patients and their families., Methods: We conducted a cross-sectional survey of 595 caregivers of seriously ill patients and interviewed 25 hospice leaders across the United States. We used multiple linear regression to analyze the survey data and qualitative methods to determine themes from the interview data., Results: Our survey showed that a good internet connection, better access to video, and the patient being younger than 65 years old were associated with greater satisfaction with telehealth. The hospice leader interviews highlighted that telehealth can enhance or detract from quality care, depending on the function; confusion over telehealth policies and concern for abuse exists; and telehealth during the pandemic has spurred on technology-enabled innovation and improvements, especially for resource-constrained hospice and palliative care organizations., Conclusions: Telehealth used during the pandemic showed that it may work for certain hospice and palliative care services. As telehealth coverage expands, it is important to address its risks and shortcomings upfront. When designed and implemented with the patient and equity in mind, telehealth has the potential to improve access to hospice and palliative care for all.

The need for palliative care (PC) has gained increased attention during the COVID-19 pandemic. Palliative care adds an extra layer of support and care for patients with advanced chronic illnesses and their families. Because of pandemic restrictions, access and provision of PC services were challenging and resulted in huge suffering and caregiving burden among patients with advanced chronic illnesses and their families, especially those living in smaller towns and rural communities. The study aimed to describe the impact of COVID-19 on PC services and examine various ethical, moral, and practice issues and challenges experienced by rural providers. Using a community-based participatory research approach, a purposive sample of health care providers (n = 15) was obtained from smaller towns and rural communities in Indiana, United States. Online individual interviews were used for data collection. Thematic analysis showed several concerns including restricted visitation, communication challenges, "hard to say goodbye over iPad", moral distress among providers, and preference for home hospice services. Findings call for strategies to implement best PC practices and programs to support providers and families in smaller towns and rural communities., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.)

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% ( n  = 140) completed the survey and 16% ( n  = 47) answered an open-ended question. Benefits included support in decision-making ( n  = 98; 70%) and identification of goals of care ( n  = 89; 64%). Barriers included perception of giving up on families ( n  = 59; 42%) and poor acceptability by other team members ( n  = 58; 41%). Respondents endorsed communication with the primary ICU team before ( n  = 122; 87%) and after ( n  = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.

Context: Despite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context., Objectives: As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice., Methods: We conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options., Results: Participants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants., Conclusion: In general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care., (Copyright © 2021. Published by Elsevier Inc.)

Background: Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation. Objective: Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives. Design: Qualitative study using patient interviews and two methods of triangulation. Setting/Subjects: Between July 2014 and September 2015, we interviewed 45 patients who participated in the intervention in a Veterans Affairs (VA) (primary site), academic, and urban safety-net health system in the United States. Main Measures: Participants were asked about what was most and least helpful, how the intervention affected participants' lives, and what should be changed about the intervention. Data were analyzed using a general inductive approach. To enhance validity of the results, we triangulated the findings from patient interviews, reviews of care coordinator documentation, and interprofessional palliative care providers. Results: The six themes identified that primary care intervention: (1) Cared for My Psychosocial Needs, (2) Encouraged Self-Management, (3) Medication Recommendations Worked, (4) Facilitated Goal Attainment, (5) Team was Beneficial, and (6) Good Visit Timing. Conclusions: Participants experienced benefits from the primary palliative care intervention and attributed these benefits to individualized assessment and support, facilitation of skill building and self-management, and oversight from an interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Context: The prevalence of venous thromboembolism (VTE) in patients with cancer is particularly high at disease progression and during relapse. Patients cared for in specialized palliative care units (SPCU) are rarely included in VTE studies. Objective: We sought to study the prevalence, clinical characteristics, and survival of individuals with VTE in an SPCU setting., Methods: We retrospectively included 2707 consecutive individuals with active cancer managed at a SPCU. Data were summarized using descriptive statistics and frequency for categorical variables. Overall survival was estimated by Kaplan-Meier and comparisons by log-rank test. Thrombotic events were confirmed by imaging., Results: We studied 1984(73.3%) women and 723 (26.7%) men. The overall prevalence of thrombosis was 22.2% with only 6.2% occurring after initiating SPCU care, and was higher in women (24.6% vs 15.8%), particularly with gynecological tumors (cervical: 30.5%, ovarian: 29.2%). Median survival was slightly longer for patients without VTE (80 days [IQR21-334] and 69 days [IQR 25-235]; p = 0.03)., Conclusions: Prevalence of VTE was high and varied by tumor origin. VTE may impact survival. Though median survival is short, some patients are followed over months, suggesting that in the absence of high bleeding risk, treatment for thrombosis in an attempt to decrease the morbidity of re-thrombosis should be considered. On the other hand, few patients developed symptomatic VTE during SPCU care, making generalized primary prophylaxis probably unwarranted. Customizing anticoagulation for the risk of hemorrhage and physical performance is essential.

Background: The impact of palliative gastrectomy for metastatic gastric adenocarcinoma, especially by site of metastasis remains unclear., Methods: The National Cancer Database, 2010-2015, was used to identify patients with clinical metastatic (cM1) gastric adenocarcinoma (n = 19,411) at diagnosis. The main variable was index management for cM1 gastric adenocarcinoma (ie, no treatment, palliative chemotherapy, or palliative gastrectomy). Cox multivariable analyses were used to account for treatment selection bias and reported as hazard ratio (HR) and 95% confidence interval., Results: Of 19,411 patients, 10,893 (56%) received palliative chemotherapy, and only 1,101 (6%) received palliative gastrectomy only. The median survival was 6.1 months, and 5-year survival was 4% in the entire cohort. Patients receiving palliative gastrectomy had a significantly longer survival than patients without any treatment or palliative chemotherapy (median: 12.8 vs 1.8 vs 9.5 months, P < .001), which remained after multivariable adjustment (HR: 0.76, 95% confidence interval: 0.71-0.81, P < .001) compared with palliative chemotherapy. Stratified analyses by clinical nodal stage (cN) demonstrated survival benefit with palliative gastrectomy: cN0 (HR: 0.71, 95% confidence interval: 0.62-0.82), cN1 (HR: 0.68, 95% confidence interval: 0.59-0.79), cN2 (HR: 0.86, 95% confidence interval: 0.70-0.94), and cN3 (HR: 0.82, 95% confidence interval: 0.70-0.92) over palliative chemotherapy. Stratified analyses by metastasis site demonstrated that palliative gastrectomy remained superior compared with palliative chemotherapy for metastatic disease limited to liver, bone, and peritoneum, but equivalent to lung metastasis and inferior to brain metastasis., Conclusion: Palliative gastrectomy appears to have a modest survival benefit over palliative chemotherapy alone. Differences in outcomes by site of metastasis warrant further research to understand tumor biology and identify specific subgroups which may benefit from palliative gastrectomy., (Copyright © 2021. Published by Elsevier Inc.)

Background: Individuals with cystic fibrosis (CF) experience symptoms affecting quality of life and may benefit from palliative care (PC). Objectives: To present results of content analysis from open-ended survey questions assessing knowledge and experiences with PC among CF stakeholders. Design, Setting, Subjects: Online surveys were sent to CF stakeholders through CF-specific listservs predominantly in the United States. Measurements: Responses to five open-ended questions about CF PC-delivery, health care provider training, and lung transplant-underwent content analysis. Responses were coded using NVivo12 Software™. Results: Forty-eight CF adults, 59 caregivers, and 229 providers responded to the open-ended survey questions. Analysis showed 5 primary categories related to CF PC: (1) stakeholder perceptions of PC for CF, (2) delivering PC to people with CF, (3) conversations about PC for CF, (4) perceptions that PC services are underutilized for people with CF, and (5) beliefs that PC services are critical for people with CF considering or pursuing lung transplant. Analysis showed variation among and within groups in defining PC for CF, when, and how to deliver it. Many respondents felt PC was underutilized in CF. Most saw PC as particularly important when considering lung transplant, managing anxiety around transplant, and for goals of care discussions. Some believed PC and lung transplant were mutually exclusive. Conclusion: Respondents felt PC is underutilized for CF, and that people with CF may miss out on the benefits of PC. Among stakeholders, respondents felt people with CF would benefit from access to primary and secondary PC services.

Objectives: To quantify the proportion of patients receiving high-intensity end-of-life care, identify associated risk factors, and assess how receipt of palliative care impact end-of-life care; as the delivery of such care, and how it relates to palliative care, has not been reported in bladder cancer SUBJECTS AND METHODS: We conducted a retrospective cohort study of patients with bladder cancer who died within 1 year of diagnosis using Surveillance, Epidemiology, and End Results linked Medicare data. The primary outcome was a composite measure of high-intensity end-of-life care (>1 hospital admission, >1 ED visit, or ≥1 ICU admission within the last month of life; receipt of chemotherapy within the last 2 weeks of life; or acute care in-hospital death). Secondary outcomes included the use of such care over time and any association with the use of palliative care. A generalized linear mixed model assessed for independent determinants., Results: Overall, 45% of patients received high-intensity end-of-life care. This proportion decreased over time. Patients receiving high-intensity care had higher rates of comorbidities, advanced bladder cancer, and nonbladder cancer cause of death. These patients more often received palliative care but, compared to those not receiving high-intensity care, this occurred farther removed from bladder cancer diagnosis and closer to death., Conclusions: Nearly half of Medicare beneficiaries with bladder cancer who die within 1 year of diagnosis receive high-intensity care at the end of life. Palliative care was seldom used and only very near the time of death., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Objective: The objective of this study was to describe the profiles and outcomes of a cohort of advanced heart failure patients on ambulatory inotropic therapy (AIT)., Background: With the growing burden of patients with end-stage heart failure, AIT is an increasingly common short or long-term option, for use as bridge to heart transplant (BTT), bridge to ventricular assist device (BTVAD), bridge to decision regarding advanced therapies (BTD) or as palliative care. AIT may be preferred by some patients and physicians to facilitate hospital discharge. However, counseling patients on risks and benefits is critically important in the modern era of defibrillators, durable mechanical support and palliative care., Methods: We retrospectively studied a cohort of 241 patients on AIT. End points included transplant, VAD implantation, weaning of inotropes, or death. The primary outcomes were survival on AIT and ability to reach intended goal if planned as BTT or BTVAD. We also evaluated recurrent heart failure hospitalizations, incidence of ventricular arrhythmias (VT/VF) and indwelling line infections. Unintended consequences of AIT, such reaching unintended end point (e.g. VAD implantation in BTT patient) or worse than expected outcome after LVAD or HT, were recorded., Results: Mean age of the cohort was 60.7 ± 13.2 years, 71% male, with Class III-IV heart failure (56% non-ischemic). Average ejection fraction was 19.4 ± 10.2%, pre-AIT cardiac index was 1.5 ± 0.4 L/min/m 2 and 24% had prior ventricular arrhythmias. Overall on-AIT 1-year survival was 83%. Hospitalizations occurred in 51.9% (125) of patients a total of 174 times for worsening heart failure, line complication or ventricular arrhythmia. In the BTT cohort, only 42% were transplanted by the end of follow-up, with a 14.8% risk of death or delisting for clinical deterioration. For the patients who were transplanted, 1-year post HT survival was 96.7%. In the BTVAD cohort, 1-year survival after LVAD was 90%, but with 61.7% of patients undergoing LVAD as INTERMACS 1-2. In the palliative care cohort, only 24.5% of patients had a formal palliative care consult prior to AIT., Conclusions: AIT is a strategy to discharge advanced heart failure patients from the hospital. It may be useful as bridge to transplant or ventricular assist device, but may be limited by complications such as hospitalizations, infections, and ventricular arrhythmias. Of particular note, it appears more challenging to bridge to transplant on AIT in the new allocation system. It is important to clarify the goals of AIT therapy upfront and continue to counsel patients on risks and benefits of the therapy itself and potential unintended consequences. Formalized, multi-disciplinary care planning is essential to clearly define individualized patient, as well as programmatic goals of AIT., (Copyright © 2021. Published by Elsevier Inc.)

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Background: Interstage mortality (IM) remains high for patients with single-ventricle congenital heart disease (SVCHD) in the period between Stage 1 Palliation (S1P) and Glenn operation. We sought to characterize IM., Methods: This was a descriptive analysis of 2184 patients with SVCHD discharged home after S1P from 60 National Pediatric Cardiology Quality Improvement Collaborative sites between 2008 and 2015. Patients underwent S1P with right ventricle-pulmonary artery conduit (RVPAC), modified Blalock-Taussig-Thomas shunt (BTT), or Hybrid; transplants were excluded., Results: IM occurred in 153 (7%) patients (median gestational age 38 weeks, 54% male, 77% white), at 88 (IQR 60,136) days of life, and 39 (IQR 17,84) days after hospital discharge; 13 (8.6%) occurred ≤ 30 days after S1P. The mortality rate for RVPAC was lower (5.2%; 59/1138) than BTT (9.1%; 65/712) and Hybrid (20.1%; 27/134). More than half of deaths occurred at home (20%) or in the emergency department (33%). The remainder occurred while inpatient at center of S1P (cardiac intensive care unit 36%, inpatient ward 5%) or at a different center (5%). Fussiness and breathing problems were most often cited as harbingers of death; distance to surgical center was the biggest barrier cited to seeking care. Cause of death was unknown in 44% of cases overall; in the subset of patients who underwent post-mortem autopsy, the cause of death remained unknown in 30% of patients, with the most common diagnosis being low cardiac output., Conclusions: Most IM occurred in the outpatient setting, with non-specific preceding symptoms and unknown cause of death. These data indicate the need for research to identify occult causes of death, including arrhythmia., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Birth weight, preterm delivery, and size for gestational age are surrogate markers for development that are commonly used in congenital heart surgery. Understanding the associations of these variables with patient outcomes is of great importance., Methods: This study included all patients with hypoplastic left heart syndrome who underwent a Norwood procedure at a single institution from 1995 to 2018. Low birth weight was defined as weight less than 2.5 kg, and preterm delivery occurred at less than 37 weeks' gestation. Overall and conditional analyses were performed to evaluate for association with outcomes after the Norwood procedure. Secondary analyses evaluated the association of development measures with postoperative length of stay and ventilator duration., Results: In total, 303 neonates (60% male) underwent the Norwood procedure and were followed for a median of 3.9 years (interquartile range, 0.5 to 10.4 years). Median birth weight was 3.1 kg (interquartile range, 2.8 to 3.4 kg). Patients with low birth weight had decreased transplant-free survival compared with patients with a normal birth weight (hazard ratio, 1.7; 95% confidence interval, 1.03 to 2.82; P = .039). When conditioning on survival to second-stage palliation, patients born small for gestational age had decreased transplant-free survival compared with patients born at appropriate size for gestational age (hazard ratio, 2.8; 95% confidence interval, 1.31 to 6.09; P = .008). Patients delivered preterm had a longer hospital length of stay (median, 55 days vs 31 days; P = .02) and more ventilator days compared with patients delivered at term (median, 7 days vs 4 days; P = .004)., Conclusions: Various developmental markers have differing prognostic importance for patients undergoing the Norwood procedure. Understanding these differences can help guide preoperative decision making and patient selection., (Copyright © 2021 The Society of Thoracic Surgeons. Published by Elsevier Inc. All rights reserved.)

Background: Palliative care (PC) education for fellows in hematology/oncology (H/O) training programs is widely accepted, but no studies to date have assessed PC education practices and values among program leadership., Methods: Program Directors and Associate Program Directors of active H/O fellowship programs in the U.S.A. were surveyed., Results: Of 149 programs contacted, 84 completed the survey (56% response rate), of which 100% offered some form of PC education. The most frequently utilized methods of PC education were didactic lectures/conferences (93%), required PC rotations (68%), and simulation/role-playing (42%). Required PC rotations were ranked highest, and formal didactic seminars/conferences were ranked fifth in terms of perceived effectiveness. The majority felt either somewhat (60%) or extremely satisfied (30%) with the PC education at their program. Among specific PC domains, communication ranked highest, addressing spiritual distress ranked lowest, and care for the imminently dying ranked second lowest in importance and competency. Solid tumor oncologists reported more personal comfort with pain management (p = 0.042), non-pain symptom management (p = 0.014), ethical/legal issues (p = 0.029), reported their fellows were less competent in pain assessment/management (p = 0.006), and communication (p = 0.011), and were more satisfied with their program's PC education (p = 0.035) as compared with hematologists., Conclusions: Significant disparities exist between those modalities rated most effective for PC education and those currently in use. Clinical orientation of program leadership can affect both personal comfort with PC skills and estimations of PC curriculum effectiveness and fellows' competency. H/O fellowship programs would benefit from greater standardization and prioritization of active PC education modalities and content.

Background: Endoscopic stenting has demonstrated value over emergent surgery as a palliative intervention for patients with acute large bowel obstruction due to advanced colorectal cancer. However, concerns regarding high reintervention rates and the risk of perforation have brought into question its cost-effectiveness., Methods: A decision tree analysis was performed to analyze costs and survival in patients with unresectable or metastatic colorectal cancer who present with acute large bowel obstruction. The model was designed with two treatment arms: self-expanding metallic stent (SEMS) placement and emergent surgery. Costs were derived from medicare reimbursement rates (US$), while effectiveness was represented by quality-adjusted life years (QALYs). The primary outcome measure was the incremental cost-effectiveness ratio (ICER). The model was tested for validation using one-way, two-way, and probabilistic sensitivity analyses., Results: Endoscopic stenting resulted in an average cost of $43,798.06 and 0.68 QALYs. Emergent surgery cost $5865.30 more, while only yielding 0.58 QALYs. This resulted in an ICER of - $58,653.00, indicating that SEMS placement is the dominant strategy. One-way and two-way sensitivity analyses demonstrated that emergent surgery would require an improved survival rate in comparison to endoscopic stenting to become the favored treatment modality. In 100,000 probabilistic simulations, endoscopic stenting was favored 96.3% of the time., Conclusions: In patients with acute colonic obstruction in the presence of unresectable or metastatic disease, endoscopic stenting is a more cost-effective palliative intervention than emergent surgery. This recommendation would favor surgery over SEMS placement with improved surgical survival, or if the majority of patients undergoing stenting required reintervention.

National and international nephrology organizations have identified substantial unmet supportive care needs of patients with kidney disease and issued recommendations. In the United States, the most recent comprehensive effort to change kidney care, the Advancing American Kidney Health Initiative, does not explicitly address supportive care needs, although it attempts to implement more patient-centered care. This Perspective from the leaders of the Coalition for Supportive Care of Kidney Patients advocates for urgent policy changes to improve patient-centered care and the quality of life of seriously ill patients with kidney disease. It argues for the provision of supportive care by an interdisciplinary team led by nephrology clinicians to improve shared decision-making, advance care planning, pain and symptom management, the explicit offering of active medical management without dialysis as an option for patients who may not benefit from dialysis, and the removal by the Centers for Medicare & Medicaid Services and all other payors of financial and regulatory disincentives to quality supportive care, including hospice, for patients with or approaching kidney failure. It also emphasizes that all educational and accreditation programs for nephrology clinicians include kidney supportive care and its essential role in the care of patients with kidney disease., (Copyright © 2020 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)

The COVID-19 pandemic is expected to surpass the healthcare system's capacity to provide intensive care to all patients who deteriorate as a result of the disease. This poses a unique challenge to healthcare teams of rationing care during pandemic when resources are scarce. Healthcare providers will need to acquire new skills in care decision making and effective symptom control for patients who do not receive life-saving measures. In this review, we describe some of the important palliative care considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of palliative care services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved one at the moment of death., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Frailty, which is a geriatric syndrome that affects 5% to 17% of older adults, is a state of increased vulnerability across multiple health domains that leads to adverse health outcomes. Frail older adults are at increased risk of falls, disability, hospitalizations, and death. Frailty may initially be overlooked or incorrectly identified as part of the normal aging process because of the variable nature of the presentation and diagnosis. Symptoms include generalized weakness, exhaustion, slow gait, poor balance, decreased physical activity, cognitive impairment, and weight loss. There is no current recommendation for routine screening. A comprehensive geriatric assessment can identify risk factors and symptoms that suggest frailty. Several validated frailty assessment tools can evaluate a patient for frailty. Patients are diagnosed as not-frail, prefrail, or frail. Patients with a larger number of frail attributes are at higher risk of poor outcomes. The management of frail patients must be individualized and tailored to each patient's goals of care and life expectancy. Physical activity and balance exercises may be suitable for patients who are less frail. Palliative care and symptom control may be appropriate for those who are more frail.

Purpose: The USA has observed a significant increase in the use of palliative care for patients diagnosed with advanced cancer. However, it is unknown how geographic variation affects patients' use of palliative care services. We examined temporal and demographic trends in receipt of and timing of palliative care by state and region., Methods: A retrospective cohort study of the Surveillance, Epidemiology, and End Results (SEER)-Medicare database. Study sample included community-dwelling patients aged ≥ 65 years with metastatic lung cancer who were diagnosed between 2001 and 2015. Cochran-Armitage trend test was used to evaluate temporal trends in receipt of and timing of palliative care by states and census region., Results: The proportion of metastatic lung cancer patients who received palliative care ranged from 16.4% in Washington and 16.3% in Connecticut to 6.4% in Louisiana. From 2001 to 2015, use of palliative care increased from 3.2 to 29.8% in the West region, from 3.3 to 31.9% in the Northeast region, from 3.8 to 36.2% in the Midwest region, and from 0.9 to 23.3% in the South region (all P < 0.001). The median time from the date of cancer diagnosis to the date of first palliative care visit varied geographically, from 44 days in Utah to 66 days in California. Hospital-based palliative care was most common in these states., Conclusion: The substantial geographic variation in the use of palliative care suggesting a need for additional research on geographic disparities in palliative care and strategies that might improve state-level palliative care delivery.

Objectives: To describe changes in the occurrence of restricting symptoms at the end of life from 1998 to 2019 and compare these changes according to the condition leading to death., Design: Prospective longitudinal study., Setting: Greater New Haven, CT., Participants: A total of 665 decedents from a cohort of 754 community-living persons, 70 years or older., Measurements: The occurrence of 16 restricting symptoms was ascertained during monthly interviews. Information on the conditions leading to death was obtained from death certificates and comprehensive assessments that were completed every 18-months. For each restricting symptom, adjusted rates (per 100 person-months) were calculated separately for six multiyear time intervals., Results: From 1998 to 2019, rates decreased for five (31.3%) restricting symptoms (difficulty sleeping; chest pain or tightness; shortness of breath; cold or flu symptoms; and nausea, vomiting, or diarrhea), increased for three (18.8%: arm or leg weakness; urinary incontinence; and memory or thinking problem), and changed little for the other eight (50.0%: poor eyesight; anxiety; depression; musculoskeletal pain; fatigue; dizziness or unsteadiness; frequent or painful urination; and swelling in feet or ankles). The decrease in rates was most pronounced for shortness of breath, with a reduction from 15.0 (95% credible interval = 11.7-18.6) in 1998 to 2001 to 8.2 (95% credible interval = 5.9-10.5) in 2014 to 2019, yielding a rate ratio (95% credible interval) of 0.92 (0.86-0.98). When evaluated according to the condition leading to death, the results were similar, with 10 of the 13 statistically significant rate ratios representing decreases in rates over time and only 3 representing increases., Conclusion: The occurrence of most restricting symptoms at the end of life has been decreasing or stable over the past two decades. These results suggest that end-of-life care has been improving, although additional efforts will be needed to further reduce symptom burden at the end of life., (© 2020 The American Geriatrics Society.)

Background: Many studies report on the patient-caregiver relationship during palliative care (PC); however, this relationship has yet to be examined following traumatic injury., Methods: This prospective cohort study included trauma patients (≥55 years) and their primary caregivers admitted at two level I trauma centers for 2 years (November 2016 to November 2018), who received PC and who completed satisfaction surveys before discharge; surveys were analyzed by four domains: information giving, availability of care, physical care, and psychosocial care, and by PC assessments: consultations, prognostications, formal family meetings (FFMs), and advanced goals of care discussions. The primary outcome was the percentage of patients and caregivers who were satisfied (defined as ≥80%) and was analyzed using McNemar's test. Adjusted mixed models identified PC assessments that were associated with satisfaction scores ≥80% for patients and caregivers., Results: Of the 441-patient and 441-caregiver pairs, caregivers were significantly less satisfied than patients during prognostications (information giving, physical care), FFMs (information giving, physical care), and consultations (physical care), while caregivers were significantly more satisfied than patients during advanced goals of care discussions (availability of care, psychosocial care). After adjustment, significant predictors of caregiver satisfaction (≥80%) included longer patient hospital length of stay (>4 days), caring for a male patient (physical care, availability of care), higher caregiver age (≥55 years; availability of care), and higher patient age (≥65 years; psychosocial care). Conversely, all PC assessments decreased odds of satisfaction for caregivers in every domain except physical care. Significant predictors of higher patient satisfaction included FFMs (for every domain) and PC consultations (psychosocial care), and decreased odds included advanced goals of care discussions and prognostication assessments (information giving, psychosocial care)., Conclusions: Palliative care increased satisfaction of patients, especially family meetings and consultations, while assessments were predictive of lower caregiver satisfaction, suggesting that caregivers may be experiencing some of the patient burden., Level of Evidence: Therapeutic/Care Management, level IV., (Copyright © 2020 American Association for the Surgery of Trauma.)

Objective: The aim of this study was to determine if magnetic resonance-guided focused ultrasound (MRgFUS) is cost-effective compared with medication, for refractory pain from bone metastases in the United States., Methods: We constructed a Markov state transition model using TreeAge Pro software (TreeAge Software, Inc., Williamstown, MA, USA) to model costs, outcomes, and the cost-effectiveness of a treatment strategy using MRgFUS for palliative treatment of painful bone metastases compared with a Medication Only strategy (Figure 1). Model transition state probabilities, costs (in 2018 US$), and effectiveness data (quality-adjusted life-years [QALYs]) were derived from available literature, local expert opinion, and reimbursement patterns at two U.S. tertiary academic medical centers actively performing MRgFUS. Costs and QALYs, discounted at three percent per year, were accumulated each month over a 24-month time horizon. One-way and probabilistic sensitivity analyses were performed., Results: In the base-case analysis, the MRgFUS treatment strategy costs an additional $11,863 over the 2-year time horizon to accumulate additional 0.22 QALYs, equal to a $54,160/QALY ICER, thus making MRgFUS the preferred strategy. One-way sensitivity analyses demonstrate that for the base-case analysis, the crossover point at which Medication Only would instead become the preferred strategy is $23,341 per treatment. Probabilistic sensitivity analyses demonstrate that 67 percent of model iterations supported the conclusion of the base case., Conclusions: Our model demonstrates that MRgFUS is cost-effective compared with Medication Only for palliation of painful bone metastases for patients with medically refractory metastatic bone pain across a range of sensitivity analyses.