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.

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.

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.

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.

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..

Parental Conflict, Regret, and Short-term Impact on Quality of Life in Tracheostomy Decision-Making.

OBJECTIVES: The prevalence of tracheostomy-dependence in critically ill children is increasing in the United States. We do not know the impact of this decision on parental outcomes. We aimed to determine the prevalence of decisional conflict and regret and explore the impact on quality of life among parents considering tracheostomy placement for their child. SUBJECTS: Parents facing tracheostomy decision for their child. DESIGN: Prospective, mixed-methods longitudinal study. SETTING: PICU, cardiac ICU, and neonatal ICU of a single quaternary medical center. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents completed a decisional conflict survey at the time of tracheostomy decision and decisional regret and quality of life surveys at 2 weeks and 3 months after the decision regarding tracheostomy placement was made. We enrolled 39 parents, of which 25 completed surveys at all three time points. Thirty-five of 39 (89.7%) reported at least some decisional conflict, most commonly from feeling uninformed and pressured to make a decision. At 2 weeks, 13 of 25 parents (52%) reported regret, which increased to 18 of 25 participants (72%) at 3 months. Regret stemmed from feeling uninformed, ill-chosen timing of placement, and perceptions of inadequate medical care. At 2 weeks, the quality of life score was in the mid-range, 78.8 (SD 13.8) and decreased to 75.5 (SD 14.2) at 3 months. Quality of life was impacted by the overwhelming medical care and complexity of caring for a child with a tracheostomy, financial burden, and effect on parent's psychosocial health. CONCLUSIONS: The decision to pursue tracheostomy among parents of critically ill children is fraught with conflict with worsening regret and quality of life over time. Strategies to reduce contributing factors may improve parental outcomes after this life-changing decision.

Crowdsourced analysis of factors and misconceptions associated with parental willingness to donate their child's organs.

We evaluated factors associated with a parental willingness to donate their child's organs. A twenty-one-question survey was administered to US parents with at least one child to measure organ donation acceptability and brain death beliefs using an online crowdsourcing medium, Amazon's Mechanical Turk Prime. We collected 425 surveys; 76% were willing to donate their own and 65% willing to donate their child's organs. Parents who agreed brain death was synonymous with death (47%) were 2.37 times more willing to donate. Compared with White respondents, Black (OR 5.27, CI 2.81, 9.88) and Hispanic (OR 2.24, CI 1.06-4.75) participants were more likely to believe doctors "steal organs from patients" and "declare someone dead based on their skin color" (OR 4.97, CI 2.65-9.32; OR 2.19, CI 1.01-4.72, respectively). Lower income participants were also more likely to believe doctors "steal organs from patients," OR 0.81 (95% CI 0.68-0.96 for increasing income) and "declare someone dead based on how much money they have," OR 0.80 (95% CI 0.67-0.96 for increasing income). Confusion surrounding brain death and skepticism (particularly among racial and ethnic minorities and lower socioeconomic groups) toward doctors' motivations for donation contribute to lack of parental willingness to donate.

Caring for Parents After the Death of a Child.

OBJECTIVES: To describe the health outcomes of bereaved parents and identify practical strategies for critical care providers as they support and provide anticipatory guidance to bereaved parents. DATA SOURCES: PubMed and PsycInfo databases with search terms of bereavement, grief, with parent and pediatric or child complimented by personal experience and knowledge. STUDY SELECTION: We sought studies describing parental health outcomes and needs of bereaved parents after the death of their child. DATA SYNTHESIS: A narrative literature review was performed and framed from the perspective of PICU providers who care for bereaved parents. We aimed to describe experiences of grief and short- and long-term consequences and approaches to the care of parents and families in the immediate period and in the months after the death of a child. CONCLUSIONS: The death of a child is a traumatic experience that can put parents at risk for adverse mental and physical health during bereavement. Health professionals working in PICUs can benefit from knowing these risks to best support bereaved parents, both during their child's hospitalization and in the early postdeath period. The bereavement experience of parents is an adaptive process, and ongoing professional support may be required for vulnerable families. After the child's hospitalization and death, a bereavement follow-up meeting with PICU physician(s) and staff may allow parents to gain additional information, emotional support, and provide an opportunity for parents to give feedback on their experiences.

Discussing Benefits and Risks of Tracheostomy: What Physicians Actually Say.

OBJECTIVES: When contemplating tracheostomy placement in a pediatric patient, a family-physician conference is often the setting for the disclosure of risks and benefits of the procedure. Our objective was to compare benefits and risks of tracheostomy presented during family-physician conferences to an expert panel's recommendations for what should be presented. DESIGN: We conducted a retrospective review of 19 transcripts of audio-recorded family-physician conferences regarding tracheostomy placement in children. A multicenter, multidisciplinary expert panel of clinicians was surveyed to generate a list of recommended benefits and risks for comparison. Primary analysis of statements by clinicians was qualitative. SETTING: Single-center PICU of a tertiary medical center. SUBJECTS: Family members who participated in family-physician conferences regarding tracheostomy placement for a critically ill child from April 2012 to August 2014. MEASUREMENTS AND MAIN RESULTS: We identified 300 physician statements describing benefits and risks of tracheostomy. Physicians were more likely to discuss benefits than risks (72% vs 28%). Three broad categories of benefits were identified: 1) tracheostomy would limit the impact of being in the PICU (46%); 2) perceived obstacles of tracheostomy can be overcome (34%); and 3) tracheostomy optimizes respiratory health (20%). Risks fell into two categories: tracheostomy involves a big commitment (71%), and it has complications (29%). The expert panel's recommendations were similar to risks and benefits discussed during family conferences; however, they suggested physicians present an equal balance of discussion of risks and benefits. CONCLUSIONS: When discussing tracheostomy placement, physicians emphasized benefits that are shared by physicians and families while minimizing the risks. The expert panel recommended a balanced approach by equally weighing risks and benefits. To facilitate educated decision making, physicians should present a more extensive range of risks and benefits to families making this critical decision.

Parent Satisfaction With Communication Is Associated With Physician's Patient-Centered Communication Patterns During Family Conferences.

OBJECTIVES: To evaluate the association between physician's patient-centered communication patterns and parental satisfaction during decision-making family conferences in the PICU. DESIGN: Single-site, cross-sectional study. SETTING: Forty-four-bed PICUs in a free-standing children's hospital. PARTICIPANTS: Sixty-seven English-speaking parents of 39 children who participated in an audiorecorded family conference with 11 critical care attending physicians. MEASUREMENTS AND MAIN RESULTS: Thirty-nine family conferences were audiorecorded. Sixty-seven of 77 (92%) eligible parents were enrolled. The conference recordings were coded using the Roter Interaction Analysis System and a Roter Interaction Analysis System-based patient-centeredness score, which quantitatively evaluates the conversations for physician verbal dominance and discussion of psychosocial elements, such as a family's goals and preferences. Higher patient-centeredness scores reflect higher proportionate dialogue focused on psychosocial, lifestyle, and socioemotional topics relative to medically focused talk. Parents completed satisfaction surveys within 24 hours of the conference. Conferences averaged 45 minutes in length (SD, 19 min), during which the medical team contributed 73% of the dialogue compared with parental contribution of 27%. Physicians dominated the medical team, contributing 89% of the team contribution to the dialogue. The majority of physician speech was medically focused (79%). A patient-centeredness score more than 0.75 predicted parental satisfaction (ß = 12.05; p < 0.0001), controlling for the length of conference, child severity of illness, parent race, and socioeconomic status. Parent satisfaction was negatively influenced by severity of illness of the patient (ß = -4.34; p = 0.0003), controlling for previously mentioned factors in the model. CONCLUSIONS: Parent-physician interactions with more patient-centered elements, such as increased proportions of empathetic statements, question asking, and emotional talk, positively influence parent satisfaction despite the child's severity of illness.

An Evaluation of Family-Centered Rounds in the PICU: Room for Improvement Suggested by Families and Providers.

OBJECTIVE: To identify areas for improvement in family-centered rounds from both the family and provider perspectives. DESIGN: Prospective, cross-sectional mixed-methods study, including an objective measure (direct observation of family-centered rounds) and subjective measures (surveys of English-speaking families and providers) of family-centered rounds. SETTING: PICU in a single, tertiary children's hospital. SUBJECTS: Families of children admitted to the PICU, physicians, and nurses. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Two hundred thirty-two family-centered round encounters were observed over a 10-week period. Family-centered round encounters averaged 10.5 minutes per child. Multivariable regression analysis revealed that family presence was independently associated with length of family-centered rounds (p < 0.002) despite family talk time accounting for an average of 25 seconds (4%) of the encounter. Non-English-speaking families were less likely to attend family-centered rounds compared with English-speaking families even when physically present at the patient's bedside (p < 0.001). Most commonly families and providers agreed that family-centered rounds keep the family informed and reported positive statements about family presence on family-centered rounds; however, PICU fellows did not agree that families provided pertinent information and nurses reported that family presence limited patient discussions. The primary advice families offered providers to improve family-centered rounds was to be more considerate and courteous, including accommodating family schedules, minimizing distractions, and limiting computer viewing. CONCLUSIONS: Family presence increased the length of family-centered rounds despite a small percentage of time spoken by families, suggesting longer rounds are due to changes in provider behavior when families are present. Also, non-English-speaking families may need more support to be able to attend and benefit from family-centered rounds. Lastly, in an era of full family-centered rounds acceptance, families and most providers, except fellows, report benefit from family presence during family-centered rounds. However, providers should be aware of the perception of their behaviors to optimize the experience for families.

The parent perspective: "being a good parent" when making critical decisions in the PICU.

OBJECTIVE: To identify factors important to parents making decisions for their critically ill child. DESIGN: Prospective cross-sectional study. SETTING: Single center, tertiary care PICU. SUBJECTS: Parents making critical treatment decisions for their child. INTERVENTION: One-on-one interviews that used the Good Parent Tool-2 open-ended question that asks parents to describe factors important for parenting their ill child and how clinicians could help them achieve their definition of "being a good parent" to their child. Parent responses were analyzed thematically. Parents also ranked themes in order of importance to them using the Good Parent Ranking Exercise. MEASUREMENT AND MAIN RESULTS: Of 53 eligible parents, 43 (81%) participated. We identified nine themes through content analysis of the parent's narrative statements from the Good Parent Tool. Most commonly (60% of quotes) components of being a good parent described by parents included focusing on their child's quality of life, advocating for their child with the medical team, and putting their child's needs above their own. Themes key to parental decision making were similar regardless of parent race and socioeconomic status or child's clinical status. We identified nine clinician strategies identified by parents as helping them fulfill their parenting role, most commonly, parents wanted to be kept informed (32% of quotes). Using the Good Parent Ranking Exercise, fathers ranked making informed medical decisions as most important, whereas mothers ranked focusing on the child's health and putting their child's needs above their own as most important. However, mothers who were not part of a couple ranked making informed medical decisions as most important. CONCLUSION: These findings suggest a range of themes important for parents to "be a good parent" to their child while making critical decisions. Further studies need to explore whether clinician's knowledge of the parent's most valued factor can improve family-centered care.

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.