Culturally Centered Palliative Care: A Framework for Equitable Neurocritical Care.

Health disparities continue to plague racial and ethnic underserved patients in the United States. Disparities extend to the most critically ill patients, including those experiencing neurologic injury and patients at the end of life. Achieving health equity in palliative care in the neurointensive care unit requires clinicians to acknowledge and address structural racism and the social determinants of health. This article highlights racial and ethnic disparities in neurocritical care and palliative care and offers recommendations for an anti-racist approach to palliative care in the neurointensive care unit for clinicians.

Nudging During Pediatric Intensive Care Conferences With Family Members: Retrospective Analysis of Transcripts From a Single-Center, 2015-2019.

OBJECTIVES: Nudging, a behavioral economics concept, subtly influences decision-making without coercion or limiting choice. Despite its frequent use, the specific application of nudging techniques by clinicians in shared decision-making (SDM) is understudied. Our aim was to analyze clinicians' use of nudging in a curated dataset of family care conferences in the PICU. DESIGN: Between 2019 and 2020, we retrospectively studied and coded 70 previously recorded care conference transcripts that involved physicians and families from 2015 to 2019. We focused on decision-making discussions examining instances of nudging, namely salience, framing, options, default, endowment, commission, omission, recommend, expert opinion, certainty, and social norms. Nudging instances were categorized by decision type, including tracheostomy, goals of care, or procedures. SETTING: Single-center quaternary pediatric facility with general and cardiac ICUs. PATIENTS: None. INTERVENTIONS: None. MEASUREMENTS: We assessed the pattern and frequency of nudges in each transcript. MAIN RESULTS: Sixty-three of the 70 transcripts contained SDM episodes. These episodes represented a total of 11 decision categories based on the subject matter of nudging instances, with 308 decision episodes across all transcripts (median [interquartile range] 5 [4-6] per conference). Tracheostomy was the most frequently discussed decision. A total of 1096 nudging instances were identified across the conferences, with 8 (6-10) nudge types per conference. The most frequent nudging strategy used was gain frame (203/1096 [18.5%]), followed by loss frame (150/1096 [13.7%]). CONCLUSIONS: Nudging is routinely employed by clinicians to guide decision-making, primarily through gain or loss framing. This retrospective analysis aids in understanding nudging in care conferences: it offers insight into potential risks and benefits of these techniques; it highlights ways in which their application has been used by caregivers; and it may be a resource for future trainee curriculum development.

Top 10 Tips Palliative Care Clinicians Should Know About Messaging for the Public.

When speaking to public audiences, palliative care advocates often reach for personal experiences of great meaning and significance in their own lives, and often distill those experiences to a key message. However, this approach may not be the most effective way to engage a public audience whose closest experience with palliative care is based on social media or third-hand stories. Research demonstrates that the lay public often starts with inaccurate assumptions about palliative care, including that it is only for people at end of life. These misunderstandings can lead people with serious illness to decline palliative care services that are backed by evidence and demonstrate real benefit. This phenomenon of "declines based on inaccurate assumptions" is widely seen in clinical practice and palliative care demonstration projects. Public messaging is an evidence-based approach to engage more effectively with the public when doing outreach for palliative care. The 10 tips provided are based on a multiyear and multiorganizational project focused on improving the messaging of palliative care for the public. As palliative care services are increasingly expanded and integrated into health systems, public messaging can provide a new approach for building partnerships with the public by offering messages that consistently meet their needs based on their current perceptions. Incorporating public-informed messaging strategies could enable palliative care clinicians and advocates to address the lay public with greater confidence and clarity about how palliative care can serve them, their families, and their communities.

Feasibility and Challenges with Measuring Adverse Childhood Experiences in the Pediatric Intensive Care Unit.

Purpose: The Adverse Childhood Experiences (ACEs) screening tool captures some experiences of childhood adversity, ranging from abuse to parental separation. Research has shown a correlation between ACEs and both adult and childhood disease. This study evaluated the feasibility of conducting ACE screening in the pediatric intensive care unit (PICU) and investigated associations with markers for severity of illness and utilization of resources. Methods: This was a cross sectional study screening for ACEs among children admitted to a single quaternary medical-surgical PICU. Children age 0-18 years old admitted to the PICU over a one-year period were considered for enrollment. A 10-question ACE screen was used to evaluate children for exposure to ACEs. Chart review was used to collect demographic and clinical data. Results: Of the 432 parents approached for enrollment, 400 (92.6%) agreed to participate. Most parents reported an ACE score of zero (68.9%) while 31% of participants experienced at least 1 ACE, of whom 14.8% experienced ≥ 2 ACEs. There was not a statistically significant association between ACE score and length of stay (p-value = 0.26) or level of respiratory support in patients with asthma (p-value = 0.15) or bronchiolitis (p-value = 0.83). The primary reasons for not approaching families were parent availability, non-English speaking parents, and social work concerns. Conclusions: This study demonstrates feasibility to collect sensitive psychosocial data in the PICU and highlights challenges to enrollment. Supplementary Information: The online version contains supplementary material available at 10.1007/s40653-023-00555-9.

Characteristics of Prognostic Statements During Family Conferences of Critically Ill Children.

OBJECTIVES: Discussion of prognosis is an essential component of decision-making family conferences in critical care. We do not know how clinicians convey prognosis to families of critically ill children. We, therefore, aimed to evaluate the frequency of prognostic statements and the message and meaning conveyed through each statement during PICU family conferences. DESIGN: Retrospective, mixed-methods study. SETTING: PICU of a single quaternary medical center. PATIENTS: Critically ill children and their families participating in PICU family conferences of critical medical decision-making. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We analyzed 72 transcripts from audio-recorded PICU family conferences to identify prognostic statements. Descriptive, thematic content analysis was used to elucidate the message and meaning of each prognostic statement. Prognosis was not discussed in 26% (19/72) of family conferences. Of the other (53/72) conferences where prognostic statements were made, 60% (67/112) of statements conveyed a message (i.e., prognostic medical information) and a meaning (i.e., anticipated impact on patient/family). "Messages" of prognostic statements fell within eight themes: uncertain recovery, delayed recovery, progressive decline, escalation of support, attributable complications, no progress, irreversible, and probability of death. "Meanings" of prognostic statements fell within six themes: restoration of health, activities of daily living, additional equipment, prolonged care needs, brain dysfunction, and death. Broadly, clinicians discussed prognostic information in three categories: loss of Time (i.e., prolonged care needs), Function (i.e., additional medical equipment), or Cure (i.e., death). CONCLUSIONS: Nearly in half of discussions (32/72, 44%) where families were asked to make critical medical decisions, clinicians did not provide a prognostic statement including a message and meaning. When discussed, prognostic information was conveyed in three categories: loss of time, function, or cure. Providing families context in this framework, particularly in times of uncertainty, may improve the family's ability to make informed, value-driven medical decisions for their child.

An Antiracism Approach to Conducting, Reporting, and Evaluating Pediatric Critical Care Research.

Reporting race and ethnicity without consideration for the complexity of these variables is unfortunately common in research. This practice exacerbates the systemic racism present in healthcare and research, of which pediatric critical care is not immune. Scientifically, this approach lacks rigor, as people are grouped into socially derived categories that are often not scientifically justified, and the field is denied the opportunity to examine closely the true associations between race/ethnicity and clinical outcomes. In this Special Article for Pediatric Critical Care Medicine, we introduce an antiracism approach to conducting, reporting, and evaluating pediatric critical care research. We propose four recommendations: 1) race and ethnicity are social constructs that should be evaluated as such, with researchers considering the context and relevance of related social determinants of health; 2) race and ethnicity data should be collected with sufficient detail to allow detection of meaningful results and minimize the risk of overgeneralizing findings; 3) as health equity research evolves, the pediatric critical care research field must adapt and proactively strive for inclusivity; and 4) the research community, including investigators, authors, research ethics committees, funding organizations, professional organizations, and journal editorial boards, are all accountable for rigorously conducting and reporting race/ethnicity in research. Taking an antiracism approach to research requires the field to ask the difficult question of why racial/ethnic differences exist to eliminate healthcare disparities and optimize healthcare outcomes for all children.

Putting Prognosis First: Impact of an Intensive Care Unit Team Premeeting Curriculum.

Background: The paradigm of care has shifted in the pediatric intensive care unit (ICU) such that patients are frequently cared for by teams of specialists rather than the ICU attending physician solely managing care. An unintended consequence of care managed by multiple specialists is that families often receive conflicting messages from different team members, with little focus on disclosing prognosis. Objective: To address this gap, we developed and pilot-tested a team communication skills training (CST) program focused on the healthcare team premeeting in which roles, purpose, and prognosis are clarified before meeting with the family. Our aim was to assess whether the team CST program was associated with increased discussion of prognosis during the team premeeting. Methods: We conducted a single-center, observational pilot study to develop and test a team CST program using a before/after design. Pediatric ICU physicians and specialists from pediatric neurology and pediatric oncology who co-led family conferences in the pediatric ICU participated in a 1-day team CST program. Team premeetings were audio-recorded and transcribed. Results: We analyzed seven pre- and 10 post-CST program audio-recorded team premeetings, which each compromised a median of eight healthcare team members. Prognosis was more likely to be discussed in post-CST team premeetings (10/10 vs. 3/7; P = 0.0147). Agreement on prognosis was achieved more frequently in post-CST teams compared with pre-CST teams, although the percentage of agreement did not reach significance (9/10 vs. 3/7; P = 0.1007). Conclusions: A CST program with a structured approach to conducting a team premeeting was associated with an increased discussion of prognosis among team members before convening with the family in the pediatric ICU.

Antiracism in Academic Medicine: Fixing the Leak in the Pipeline of Black Physicians.

Black physicians remain severely underrepresented in academic medicine despite the documented benefits of a diverse medical faculty. Only 3.6% of academic medical faculty self-report as Black or African American. Efforts to improve faculty diversity at academic medical institutions nationwide have not made meaningful impacts. Sustained improvements in faculty diversity cannot be achieved without an actively antiracist approach, including the intentional transformation of policies, practices, and systems that persistently produce worse outcomes for Black medical students, trainees, and faculty.

A Communication Guide for Pediatric Extracorporeal Membrane Oxygenation.

Decision-making surrounding extracorporeal membrane oxygenation initiation and decannulation has become a key challenge in critical care. Nuanced communication skills and transparent discussions about prognosis are imperative during this lifesaving, yet high-risk and burdensome intervention. Serious illness conversation guides are proving beneficial for patients, families and staff to communicate uncertainty and facilitate shared decision-making toward goal-concordant care. While the literature emphasizes the imperative to provide guidance for clinicians, no practical guide exists for communicating serious illness and prognostic uncertainty when managing children supported with extracorporeal membrane oxygenation and their families. To address this gap, we propose a structured conversation guide for critical early timepoints during pediatric extracorporeal membrane oxygenation support relevant for all cannulations and subsequent iterative discussions toward decannulation. The overarching approach defines extracorporeal membrane oxygenation as a bridge or temporary support device, part of a larger therapeutic effort toward a specific goal or goals. The Day 0 talk at extracorporeal membrane oxygenation initiation is brief, disclosing the serious nature of needing this level of support, and sets clear expectations toward a goal. The Day 1 talk provides further details about benefits and burdens of extracorporeal membrane oxygenation, cultivates prognostic awareness about potential outcomes and elicits families' goals of care with iterative discussions about how extracorporeal membrane oxygenation may promote these goals. If extracorporeal membrane oxygenation is no longer effective to achieve the intended goal, recommendations are provided for discontinuation of support. When death is anticipated or possible, end-of-life planning, contingencies, and escalation limits should be discussed. The communication framework presented can be adapted to unique institutional and clinical settings. Future research is required to investigate utility and potential barriers to implementation. We anticipate that structured conversations during extracorporeal membrane oxygenation support will facilitate clear expectations toward a common treatment goal, foster therapeutic relationships, ensure clinician alignment and consistent language, mitigate communication gaps, support bereavement, and minimize conflict.

Decision-Making, Ethics, and End-of-Life Care in Pediatric Extracorporeal Membrane Oxygenation: A Comprehensive Narrative Review.

OBJECTIVES: Pediatric extracorporeal membrane oxygenation is associated with significant morbidity and mortality. We sought to summarize literature on communication and decision-making, end-of-life care, and ethical issues to identify recommended approaches and highlight knowledge gaps. DATA SOURCES: PubMed, Embase, Web of Science, and Cochrane Library. STUDY SELECTION: We reviewed published articles (1972-2020) which examined three pediatric extracorporeal membrane oxygenation domains: 1) decision-making or communication between clinicians and patients/families, 2) ethical issues, or 3) end-of-life care. DATA EXTRACTION: Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology. DATA SYNTHESIS: Of 2,581 publications screened, we identified one systematic review and 35 descriptive studies. No practical guides exist for communication and decision-making in pediatric extracorporeal membrane oxygenation. Conversation principles and parent/clinician perspectives are described. Ethical issues related to consent, initiation, discontinuation, resource allocation, and research. No patient-level synthesis of ethical issues or end-of-life care in pediatric extracorporeal membrane oxygenation was identified. CONCLUSIONS: Despite numerous ethical issues reported surrounding pediatric extracorporeal membrane oxygenation, we found limited patient-level research and no practical guides for communicating with families or managing extracorporeal membrane oxygenation discontinuation.

"You Have Made All the Loving Choices": Good Parent Praise in Pediatric Critical Care Conferences.

BACKGROUND AND OBJECTIVES: Parents' ideas about what it means to be a "good parent" to their seriously ill child influence parental decision-making. Little is known about when, why, and how clinicians offer good-parent praise or how parents react. Our objective was to describe clinicians' spontaneous use of good-parent praise statements to parents during PICU care conferences and how parents respond. METHODS: Single-center, cross-sectional review of 72 transcripts of audio-recorded PICU care conferences in a quaternary medical center. Qualitative analysis was conducted to code triggers for clinician good-parent statements and parent responses. RESULTS: Clinicians made at least one statement of good-parent praise in 32% of family conferences. Triggers for clinician statements of good-parent praise were categorized into 6 themes: decision making, gratitude to the clinical team, defense of parenting, parental body language, parental guilt, and intention to close the meeting. Parental responses to clinician statements of good-parent praise fell into 6 themes: acknowledgment, medical talk, deepening of feelings expressed in conversation, focusing on a decision, redirecting on the patient, and gratitude. CONCLUSIONS: Clinicians spontaneously praised parents for their role in being a good parent in less than one-third of family conferences. Clinician statements were triggered by verbal and nonverbal parental behaviors, a critical decision-making point in the conversation, and an intention to close the meeting. In response, parents frequently responded positively to the praise and often returned the gratitude or reflected on their feelings about caregiving for their child.

Parental Perspectives on the Postpartum Bonding Experience after Neonatal Intensive Care Unit Transfer to a Referral Hospital.

OBJECTIVE: The aim of this study is to describe the postpartum bonding experience of parents whose newborns were transferred to a referral hospital while their mothers remained at the delivery hospital. STUDY DESIGN: A total of 18 semi-structured interviews conducted with mothers within 2 weeks of birth were completed. Thematic analysis was performed. RESULT: In total, 72% of mothers were unable to hold their newborns, and mothers spent a median of 15 minutes with their newborn prior to transfer. Thematic analysis revealed five themes: three barriers to bonding (medical, hospital, and family barriers) and two themes of interventions that helped promote bonding (parent and hospital-initiated interventions). Using technology such as bedside cameras, recording of heart beats, and video chatting on rounds were extremely popular. CONCLUSION: Parents identified multiple barriers to maternal-infant bonding and suggested several parent-focused and hospital-focused interventions to enhance bonding. Strategies that address barriers should be used to help parents promote bonding during separation from their newborns. KEY POINTS: · Transfer to referral neonatal intensive care units interrupts bonding.. · Interviews reveal multiple barriers to bonding.. · Interventions can be parent or hospital initiated.. · Technology is playing a growing role..

Lack of Exposure to Palliative Care Training for Black Residents: A Study of Schools With Highest and Lowest Percentages of Black Enrollment.

CONTEXT: The palliative medicine workforce lacks racial diversity with <5% of specialty Hospice and Palliative Medicine (HPM) fellows identifying as black. Little is known about black trainees' exposure to palliative care during their medical education. OBJECTIVES: To describe palliative care training for black students during medical school, residency, and fellowship training. METHODS: We conducted a cross-sectional descriptive study using Internet searches and phone communication in September 2019. We evaluated 24 medical schools in three predetermined categories: historically black colleges and universities (HBCUs; N = 4) and non-under-represented minority-serving institutions with the highest (N = 10) and lowest (N = 10) percentages of black medical students. Training opportunities were determined based on the presence of a course, clerkship, or rotation in the medical school and residency curricula, a specialty HPM fellowship program, and specialty palliative care consult service at affiliated teaching hospitals. RESULTS: None of the four HBCUs with a medical school offered a palliative care course or clerkship, rotation during residency, or specialty HPM fellowship program. Three of four HBCUs were affiliated with a hospital that had a palliative care consult service. Institutions with the highest black enrollment were less likely to offer palliative care rotations during internal medicine (P = 0.046) or family medicine (P = 0.019) residency training than those with the lowest black enrollment. CONCLUSION: Residents at schools with the highest black medical student enrollment lack access to palliative care training opportunities. Efforts to reduce health disparities and underrepresentation in palliative care must begin with providing palliative-focused training to physicians from under-represented minority backgrounds.

A Quality Improvement Project to Improve Documentation and Awareness of Limitations of Life-Sustaining Therapies.

PURPOSE: Poor documentation and understanding of the limitations of life-sustaining therapies upon admission to the pediatric intensive care unit (PICU) can result in moral distress for both providers and families. Limitations of life-sustaining treatments are often not documented and/or understood by members of the health care team. METHODS: We performed a quality improvement initiative to improve the care teams' understanding and paper documentation of the limitations of life-sustaining therapies in the PICU of a quaternary children's hospital from January 2018 to March 2019. We implemented a series of plan-do-study-act cycles, including initiation of an updated rounding tool that included limitations of interventions, in-person and electronic information sessions, and implementation of a visual bedside tool to remind providers when limitations were present. Pre- and postintervention surveys were administered. RESULTS: Nursing paper documentation of limitations of life-sustaining therapies increased sequentially from 0% to 88% during plan-do-study-act cycles. Creating a specific area to document limitations on the nursing sheet resulted in the most significant increase in documentation (36.6 points). Nurses reported that they "always" document limitations, which increased from 10% to 38%. The percentage of nurses who understood patients' intervention limitations increased from 28% to 33%. CONCLUSIONS: Limitations of life-sustaining therapies in the PICU are nuanced and involve multiple stakeholders. Nursing education and designation of a section of intervention limitations in nursing daily goal paper documentation can increase comfort with therapeutic limitations in the PICU. Future studies should explore impacts on patient care and serve as a framework for the ultimate goal of improving documentation of care limitations and code status in the electronic medical record.