Palliative care utilization and racial and ethnic disparities among women with de novo metastatic breast cancer in the United States.

PURPOSE: The potential disparities in palliative care delivery for underrepresented minorities with breast cancer are not well known. We sought to determine whether race and ethnicity impact the receipt of palliative care for patients with metastatic breast cancer (MBC). METHODS: We retrospectively reviewed the National Cancer Database for female patients diagnosed with stage IV breast cancer between 2010 and 2017 who received palliative care following diagnosis of MBC to assess the proportion of patients who received palliative care, including non-curative-intent local-regional or systemic therapy. Multivariable logistic regression analysis was performed to identify variables associated with receiving palliative care. RESULTS: 60,685 patients were diagnosed with de novo MBC. Of these, only 21.4% (n = 12,963) received a palliative care service. Overall, there was a positive trend in palliative care receipt from 18.2% in 2010 to 23.0% in 2017 (P < 0.001), which persisted when stratified by race and ethnicity. Relative to non-Hispanic White women, Asian/Pacific Islander women (aOR 0.80, 95% CI 0.71-0.90, P < 0.001), Hispanic women (adjusted odds ratio [aOR] 0.69, 95% CI 0.63-0.76, P < 0.001), and non-Hispanic Black women (aOR 0.94, 95% CI 0.88-0.99, P = 0.03) were less likely to receive palliative care. CONCLUSIONS: Fewer than 25% of women with MBC received palliative care between 2010 and 2017. While palliative care has significantly increased for all racial/ethnic groups, Hispanic White, Black, and Asian/Pacific Islander women with MBC still receive significantly less palliative care than non-Hispanic White women. Further research is needed to identify the socioeconomic and cultural barriers to palliative care utilization.

The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals' and patient and family carers' perspectives.

BACKGROUND: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. AIM: To establish expert consensus on the most important components of out-of-hours community palliative care services. DESIGN: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project's patient and public involvement advisory group. The components deemed 'essential' by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. PARTICIPANTS: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. RESULTS: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. CONCLUSIONS: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

Nurses' knowledge, attitudes, and willingness to practice hospice care: An analysis of influencing factors.

BACKGROUND: Hospice care is a multidisciplinary approach that focused on patients' quality of life, and nurses allocate more of their time with patients and patients' families than those nurses working in other disciplines. Nurses' knowledge of and attitudes toward hospice care can affect the quality of hospice care. At present, China's hospice care institutions are suffering from an obvious shortage of nursing staff. Since clinical nurses are the main force behind the future provision of hospice care, their knowledge of, attitudes and willingness to practice can greatly promoted the growth of hospice care, however, available data on clinical nurses' willingness to practice hospice care are limited. METHODS: A cross-sectional descriptive study design was employed to collect data from 1833 nurses working in tertiary or secondary general hospitals in Guangxi, China. We examined nurses' demographic characteristics and scores on the Chinese version of the hospice care knowledge scale, the Chinese version of the Bradley Attitude Assessment Questionnaire, and a brief quiz concerning their willingness to practice hospice care in the future. Descriptive, single factor, multiple regression analyses and logistic regression analyses were used for data analysis. RESULTS: Nurses displayed moderate mean scores for both knowledge of and attitudes, and only 505 (27.5%) nurses expressed their willingness to practice hospice care, 1329 (72.5%) of nurses sampled expressed their unwillingness or uncertainty. Multivariate regression analyses showed that education, professional qualification, monthly income, whether they had been trained in hospice care, and willingness to practice hospice care were the main influencing factors of knowledge; education, whether they lived with someone aged >60 years, and whether they had been trained in hospice care were main factors influencing attitudes. Additionally, logistic regression analyses showed that hospice care knowledge, whether they had been trained in hospice care, and whether they had clinical experience affected the nurses' willingness to practice hospice care. CONCLUSION: This study highlighted a knowledge gap and moderate attitudes toward hospice care among nurses, and most nurses did not prefer to practice hospice care. Having been trained in hospice care was the main common factor of nurses' knowledge of, attitudes toward, and willingness to practice hospice care in the future, indicating the necessity to provide nurses with more targeted hospice care training.

Use of Theoretical Frameworks in the Development and Testing of Palliative Care Interventions.

CONTEXT: Palliative care (PC) research has grown over the last 20 years. Yet, the causal components and pathways of PC interventions remain unclear. OBJECTIVES: To document the prevalence and application of theoretical frameworks in developing and testing PC interventions. METHODS: We conducted a secondary analysis of previously published systematic reviews of PC randomized clinical trials. Trials were evaluated for explicit mention of a theoretical framework, process or delivery model, or clinical practice guideline that supported the development of the intervention. We used a structured data extraction form to document study population, outcomes, and whether and how authors used a theoretical framework, process/delivery model, or clinical practice guideline. We applied an adapted coding scheme to evaluate use of theoretical frameworks. RESULTS: We reviewed 85 PC trials conducted between 1984 and 2021. Thirty-eight percent (n = 32) of trials explicitly mentioned a theoretical framework, process or delivery model, or clinical practice guideline as a foundation for the intervention design. Only nine trials included a theoretical framework, while the remaining 23 cited a process/delivery model or clinical practice guideline. CONCLUSION: Most PC trials do not cite a theoretical foundation for their intervention design. Future work should focus on developing and validating new theoretical frameworks and modifying existing theories and models to better explain the mechanisms of the variety of PC interventions.

Care of older people and people requiring palliative care with COVID-19: guidance from the Australian National COVID-19 Clinical Evidence Taskforce.

INTRODUCTION: Older people living with frailty and/or cognitive impairment who have coronavirus disease 2019 (COVID-19) experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People and Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care from across Australia. MAIN RECOMMENDATIONS: The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are i) older and living with frailty and/or cognitive impairment, and ii) receiving palliative care for COVID-19 or other underlying illnesses. The flow charts focus on goals of care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring palliative care. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINE: The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring palliative care. The adult recommendations contain additional considerations for the care of older people and those requiring palliative care.

Improving Serious Illness Care for Surgical Patients: Quality Indicators for Surgical Palliative Care.

OBJECTIVE: Develop quality indicators that measure access to and the quality of primary PC delivered to seriously ill surgical patients. SUMMARY OF BACKGROUND DATA: PC for seriously ill surgical patients, including aligning treatments with patients' goals and managing symptoms, is associated with improved patient-oriented outcomes and decreased healthcare utilization. However, efforts to integrate PC alongside restorative surgical care are limited by a lack of surgical quality indicators to evaluate primary PC delivery. METHODS: We developed a set of 27 preliminary indicators that measured palliative processes of care across the surgical episode, including goals of care, decision-making, symptom assessment, and issues related to palliative surgery. Then using the RAND-UCLA Appropriateness method, a 12-member expert advisory panel rated the validity (primary outcome) and feasibility of each indicator twice: (1) remotely and (2) after an in-person moderated discussion. RESULTS: After 2 rounds of rating, 24 indicators were rated as valid, covering the preoperative evaluation (9 indicators), immediate preoperative readiness (2 indicators), intraoperative (1 indicator), postoperative (8 indicators), and end of life (4 indicators) phases of surgical care. CONCLUSIONS: This set of quality indicators provides a comprehensive set of process measures that possess the potential to measure high quality PC for seriously ill surgical patients throughout the surgical episode.

International consensus-based policy recommendations to advance universal palliative care access from the American Academy of Nursing Expert Panels.

The purpose of this consensus paper was to convene leaders and scholars from eight Expert Panels of the American Academy of Nursing and provide recommendations to advance nursing's roles and responsibility to ensure universal access to palliative care. On behalf of the Academy, these evidence-based recommendations will guide nurses, policy makers, government representatives, professional associations, and interdisciplinary and community partners to integrate palliative nursing services across health and social care settings. Through improved palliative nursing education, nurse-led research, nurse engagement in policy making, enhanced intersectoral partnerships with nursing, and an increased profile and visibility of palliative care nurses worldwide, nurses can assume leading roles in delivering high-quality palliative care globally, particularly for minoritized, marginalized, and other at-risk populations. Part II herein provides a summary of international responses and policy options that have sought to enhance universal palliative care and palliative nursing access to date. Additionally, we provide ten policy, education, research, and clinical practice recommendations based on the rationale and background information found in Part I. The consensus paper's 43 authors represent eight countries (Australia, Canada, England, Kenya, Lebanon, Liberia, South Africa, United States of America) and extensive international health experience, thus providing a global context for the subject matter.

Effect of an Oncology Nurse-Led Primary Palliative Care Intervention on Patients With Advanced Cancer: The CONNECT Cluster Randomized Clinical Trial.

Importance: Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services. Objective: To assess the effect of CONNECT (Care Management by Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes. Design, Setting, and Participants: This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle. Interventions: The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care. Main Outcomes and Measures: The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale [HADS]: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted. Results: A total of 672 patients were enrolled (mean [SD] age, 69.3 [10.2] years; 360 women [53.6%]). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 [28.2] vs 134.1 [28.1]; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 [16.6] vs 24.0 [16.1]; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 [3.4] vs 4.8 [3.7], adjusted mean difference, -0.08 [95% CI, -0.71 to 0.57], P = .82; HADS anxiety subscale score: 5.7 [3.9] vs 5.4 [4.2], adjusted mean difference, -0.31 [95% CI, -0.96 to 0.33], P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention. Conclusions and Relevance: This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists. Trial Registration: ClinicalTrials.gov Identifier: NCT02712229.

The outcomes of severe COVID-19 pneumonia managed with supportive care in Palestine: an experience from a developing country.

INTRODUCTION: About 14% of COVID-19 patients experience severe symptoms and require hospitalization. Managing these patients could be challenging for limited-resource countries, such as Palestine. This study aimed to evaluate hospitalized severe COVID-19 patients' treatment outcomes managed with supportive care and steroids. METHODOLOGY: This was a single-center observational retrospective cohort study that enrolled COVID-19 patients admitted to the "Martyrs medical military complex- COVID Hospital" in Palestine. The managing physicians manually collected data through chart reviews, including patients' characteristics, complications, outcomes, and different management modalities. Continuous and categorical variables between those who were discharged alive and who died were compared using t-test and Chi-squares test, respectively. RESULTS: Overall, 334 patients were included in this study. Median (IQR) age was 62(11) years, 49.1% were males, and 29.6% were ICU status patients. The median (IQR) PaO2/FiO2 ratio was 76 (67), and 67.6% of these patients had moderate to severe acute respiratory distress syndrome, and 4.8% of the patients received invasive mechanical ventilation. Most of the patients (78.7%) had at least one comorbidity, and 18.3% developed at least one complication. The overall mortality was 12.3% (95% CI 8.9-16.2%), and the median (IQR) length of hospital stay was 11 (8) days. Age (aOR 1.05, p = 0.08), smoking (aOR 4.12, p = 0.019), IMV (aOR 27.4, p < 0.001) and PaO2/FiO2 ratio (aOR 1.03, p < 0.001) were found to predict higher mortality. CONCLUSIONS: Supportive care for patients with severe COVID-19 pneumonia in a Palestinian hospital with limited resources was associated with in-hospital mortality of 12.3%.

United States Best Practice Guidelines for Primary Palliative Care in the Emergency Department.

The growing palliative care needs of emergency department (ED) patients in the United States have motivated the development of ED primary palliative care principles. An expert panel convened to develop best practice guidelines for ED primary palliative care to help guide frontline ED clinicians based on available evidence and consensus opinion of the panel. Results include recommendations for screening and assessment of palliative care needs, ED management of palliative care needs, goals of care conversations, ED palliative care and hospice consults, and transitions of care.

Evaluation of automated specialty palliative care in the intensive care unit: A retrospective cohort study.

INTRODUCTION: Automated specialty palliative care consultation (SPC) has been proposed as an intervention to improve patient-centered care in the intensive care unit (ICU). Existing automated SPC trigger criteria are designed to identify patients at highest risk of in-hospital death. We sought to evaluate common mortality-based SPC triggers and determine whether these triggers reflect actual use of SPC consultation. We additionally aimed to characterize the population of patients who receive SPC without meeting mortality-based triggers. METHODS: We conducted a retrospective cohort study of all adult ICU admissions from 2012-2017 at an academic medical center with five subspecialty ICUs to determine the sensitivity and specificity of the five most common SPC triggers for predicting receipt of SPC. Among ICU admissions receiving SPC, we assessed differences in patients who met any SPC trigger compared to those who met none. RESULTS: Of 48,744 eligible admissions, 1,965 (4.03%) received SPC; 979 (49.82%) of consultations met at least 1 trigger. The sensitivity and specificity for any trigger predicting SPC was 49.82% and 79.61%, respectively. Patients who met no triggers but received SPC were younger (62.71 years vs 66.58 years, mean difference (MD) 3.87 years (95% confidence interval (CI) 2.44-5.30) p<0.001), had longer ICU length of stay (11.43 days vs 8.42 days, MD -3.01 days (95% CI -4.30 --1.72) p<0.001), and had a lower rate of in-hospital death (48.68% vs 58.12%, p<0.001). CONCLUSION: Mortality-based triggers for specialty palliative care poorly reflect actual use of SPC in the ICU. Reliance on such triggers may unintentionally overlook an important population of patients with clinician-identified palliative care needs.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

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.

Feasibility and Acceptability of a Reiki Intervention With Very Young Children Receiving Palliative Care.

BACKGROUND: Very little research has been reported examining nonpharmacological symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: The aim of this study was to determine if completing a Reiki intervention with hospitalized 1- to 5-year-old children with chronic, life-limiting conditions receiving palliative care was feasible and acceptable. METHODS: Children ages 1-5 years receiving palliative care who were expected to be hospitalized for at least 3 weeks were recruited for a single-arm, mixed-methods, quasi-experimental pre- and poststudy. Six protocolized Reiki sessions were conducted over 3 weeks. We calculated feasibility by the percentage of families enrolled in the study and acceptability by the percentage of families who completed all measures and five out of six Reiki sessions. Measures were collected at baseline, at the end of the intervention period, and 3 weeks later. At the final follow-up visit, parents were verbally asked questions relating to the acceptability of the intervention in a short structured interview. RESULTS: We screened 90 families, approached 31 families, and recruited 16 families, whereas 15 families declined. Reasons for not participating included that the child had "a lot going on," would be discharged soon, and families were overwhelmed. Of those enrolled, most completed all measures at three time points and five out of six Reiki sessions. We completed nearly all scheduled Reiki sessions for families that finished the study. All parents reported that they would continue the Reiki if they could, and almost all said they would participate in the study again; only one parent was unsure. DISCUSSION: Young children and their parents found Reiki acceptable; these results are comparable to an earlier study of children 7-16 years of age receiving palliative care at home and a study of massage for symptom management for hospitalized children with cancer. These findings add to the literature and support further investigation of Reiki's efficacy as a nonpharmacological symptom management intervention.

Oncology Medical Home: ASCO and COA Standards.

PURPOSE: To provide Standards on the basis of evidence and expert consensus for a pilot of the Oncology Medical Home (OMH) certification program. The OMH model is a system of care delivery that features coordinated, efficient, accessible, and evidence-based care and includes a process for measurement of outcomes to facilitate continuous quality improvement. The OMH pilot is intended to inform further refinement of Standards for OMH model implementation. METHODS: An Expert Panel was formed, and a systematic review of the literature on the topics of OMH, clinical pathways, and survivorship care plans was performed using PubMed and Google Scholar. Using this evidence base and an informal consensus process, the Expert Panel developed a set of OMH Standards. Public comments were solicited and considered in preparation of the final manuscript. RESULTS: Three comparative peer-reviewed studies of OMH met the inclusion criteria. In addition, the results from 16 studies of clinical pathways and one systematic review of survivorship care plans informed the evidence review. Limitations of the evidence base included the small number of studies of OMH and lack of longer-term outcomes data. More data were available to inform the specific Standards for pathways and survivorship care; however, outcomes were mixed for the latter intervention. The Expert Panel concluded that in the future, practices should be encouraged to publish the results of OMH interventions in peer-reviewed journals to improve the evidence base. STANDARDS: Standards are provided for OMH in the areas of patient engagement, availability and access to care, evidence-based medicine, equitable and comprehensive team-based care, quality improvement, goals of care, palliative and end-of-life care discussions, and chemotherapy safety. Additional information, including a Standards implementation manual, is available at www.asco.org/standards.

Early Palliative Care Consultation in the Burn Unit: A Quality Improvement Initiative to Increase Utilization.

Despite significant morbidity and mortality for major burns, palliative care consultation (PCC) is underutilized in this population. The purpose of this study is to examine the impact of a protocol using recommended "triggers" for PCC at a single academic burn center. This is a retrospective review of patient deaths over a 4-year period. The use of life-sustaining treatments, comfort care (de-escalation of one or more life-sustaining treatments), and do not attempt resuscitation (DNAR) orders were determined. The use of PCC was compared during periods before and after a protocol establishing recommended triggers for early (<72 hours of admission) PCC was instituted in 2019. A total of 33 patient deaths were reviewed. Most patients were male (n = 28, 85%) and median age was 62 years [IQR: 42-72]. Median-revised Baux score was 112 [IQR: 81-133]. Many patients had life-sustaining interventions such as intubation, dialysis, or cardiopulmonary resuscitation, often prior to admission. Amongst patients who survived >24 hours, 67% (n = 14/21) had PCC. Frequency of PCC increased after protocol development, with 100% vs 36% of these patients having PCC before death (P = .004). However, even during the later period, less than half of patients had early PCC despite meeting criteria at admission. In conclusion, initiation of life-sustaining measures in severely injured burn patients occurs prior to or early during hospitalization. Thus, value-based early goals of care discussions are valuable to prevent interventions that do not align with patient values and assist with de-escalation of life-sustaining treatment. In this small sample, we found that while there was increasing use of PCC overall after developing a protocol of recommended triggers for consultation, many patients who met criteria at admission did not receive early PCC. Further research is needed to elucidate reasons why providers may be resistant to PCC.

Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results.

Fidelity (consistency of intervention implementation) is essential to rigorous research. Intervention fidelity maintains study internal validity, intervention reproducibility, and transparency in the research conduct. The purpose of this manuscript is to describe intervention fidelity strategies/procedures developed for a pilot study testing a new palliative care nursing intervention (FamPALcare) for families managing advanced lung disease. The procedures described herein are based on the fidelity best practices recommendations from the NIH Consortium. An evidence-based checklist guided observational ratings of the fidelity procedures used and the intervention content implemented in each intervention session. Descriptive data on how participants understood (received), enacted, or used the intervention information were summarized. The fidelity checklist observational scores found ≥93% of the planned intervention content was implemented, and the fidelity strategies were adhered to consistently during each intervention session. The small variation (7%) in implementation was expected and related to participants' varying experiences, input, and/or questions. The helpfulness scale items include participants' ability to use home care resources, to anticipate and manage end-of-life symptoms, and to use Advance Directive forms. The high ratings (M = 4.4) on the 1-5 (very helpful) Likert Helpfulness Scale verified participants utilized the information from the intervention. Furthermore, there was an improvement in patients' breathlessness scores and completion of Advance Directive forms at 3 months after baseline. It is essential to plan intervention fidelity strategies to use throughout a study and to report fidelity results.

Pediatric Palliative Care Programs in US Hospitals.

BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.

Teaching supportive care: what is the core curriculum?

PURPOSE OF REVIEW: Cancer treatment options have developed rapidly in the past years. Targeted- and immune therapy have resulted in additional supportive care needs. This review describes a teaching program in supportive care. RECENT FINDINGS: Supportive care begins at the time of cancer diagnosis and continues until the patient has died or is cured and late toxicities and other survivorship issues have been properly addressed. Supportive care is divided into four phases. In the curative phase, competences regarding prevention and management of acute treatment and subacute treatment side effects are important. In the survivorship phase, competences related to late toxicity and chronic toxicity are warranted. In the palliative phase, focus will be on competences concerning cancer complications, and specific end-of-life competences are needed as well. Obviously some competences are needed in all phases, for example, communication skills. SUMMARY: Competences concerning symptoms and complications are summarized for each phase in table format. General competences are listed in the text body of the manuscript. Regular update and implementation is crucial. The future cancer population will consist of a higher number of older cancer patients and survivors. This should reflect curriculum updates as should the increasing possibilities for multigene sequencing enabling personal medicine (including supportive care) to a larger extent than today.

Development of Care Curves Following the Stage 1 Palliation: A Comparison of Intensive Care Among 5 Centers.

Background Comparison of care among centers is currently limited to major end points, such as mortality, length of stay, or complication rates. Creating "care curves" and comparing individual elements of care over time may highlight modifiable differences in intensive care among centers. Methods and Results We performed an observational retrospective study at 5 centers in the United States to describe key elements of postoperative care following the stage 1 palliation. A consecutive sample of 502 infants undergoing stage 1 palliation between January 2009 and December 2018 were included. All electronic health record entries relating to mandatory mechanical ventilator rate, opioid administration, and fluid intake/outputs between postoperative days (POD) 0 to 28 were extracted from each institution's data warehouse. During the study period, 502 patients underwent stage 1 palliation among the 5 centers. Patients were weaned to a median mandatory mechanical ventilator rate of 10 breaths/minute by POD 4 at Center 5 but not until POD 7 to 8 at Centers 1 and 2. Opioid administration peaked on POD 2 with extreme variance (median 6.9 versus 1.6 mg/kg per day at Center 3 versus Center 2). Daily fluid balance trends were variable: on POD 3 Center 1 had a median fluid balance of -51 mL/kg per day, ranging between -34 to 19 mL/kg per day among remaining centers. Intercenter differences persist after adjusting for patient and surgical characteristics (P<0.001 for each end point). Conclusions It is possible to detail and compare individual elements of care over time that represent modifiable differences among centers, which persist even after adjusting for patient factors. Care curves may be used to guide collaborative quality improvement initiatives.