Therapeutic effort adequacy directives. Experience of a Pediatric Palliative Care Unit

A couple presents to maternal fetal medicine clinic 3 days after a routine prenatal ultrasound at 19 weeks revealed a brain malformation consistent with severe holoprosencephaly in an otherwise normal appearing fetus. Clinicians share with the parents that many families decide to terminate their pregnancy in this situation on the basis of the likelihood that their child will have lifelong severe neurologic impairment (SNI) and require frequent hospital and medicalized home care. Without much further discussion, the couple immediately responds that they will continue their pregnancy. They express hope that their infant's health will be better than doctors anticipate.Presenting at term in labor with brain abnormalities confirmed on ultrasound, the obstetric clinicians ask the parents about their goals of care. The couple again shares that they remain hopeful and that they would like every intervention done to help their child survive. The infant emerges lethargic and without respiratory effort requiring intubation in the delivery room and admission to the NICU. At the time of birth, the parents share that they are feeling a mix of surprise, anger, joy, and sadness. Over the subsequent months, the infant continues to show signs of SNI, grows well after a gastrostomy tube is placed, and remains intubated for intermittent apnea and airway obstruction. After discussions with the neonatology and surgery teams, the parents agree to a tracheostomy in hopes that this will enable them to eventually reach their goal of bringing their infant home.This case is rife with the types of decisions parents and clinicians face in the care of infants and children with congenital and anatomic brain abnormalities resulting in SNI.1,2 These decisions can be challenging. They are high stakes, have no single correct choice, and are dependent on parent values and preferences.2 Parents and clinicians may experience heightened stress and strong emotions in these difficult situations, making disagreements likely.3,4 Despite this, clinicians must work with families to select the best course of action for their particular child among several preference-sensitive options.2A complicated and often underappreciated aspect of the process of aligning parental values and preferences with treatment options is the use of cognitive shortcuts. Cognitive shortcuts are the automatic thought patterns that people use to make decision-making more efficient.5 They are frequently used in response to stress and complex time-limited decision-making.5 At times, the use of cognitive shortcuts can be beneficial and even necessary. In other situations, however, cognitive shortcuts can be misapplied and result in biased decision-making.Biased decision-making through the misapplication of cognitive shortcuts has particular relevance in decision-making for children with SNI because uncertainty, strong emotions, value judgements, and preference-sensitive options are the norm.6 Parents of children with SNI who misapply a cognitive shortcut may choose a course of action in the moment without fully considering why they prefer that option and how it aligns with their values. Similarly, clinicians who misapply cognitive shortcuts may recommend a specific treatment option without deeply considering and understanding the parents' values and preferences.In the case presented, for instance, the couple may be employing the representativeness cognitive shortcut to estimate the likelihood of their child's prognosis. This may ultimately lead to a biased estimation, optimism bias, in which the parents underestimate the probability of a bad outcome. Similarly, clinicians may recommend comfort care in these situations because of their tendency to underestimate a family's resilience to adapt to an unanticipated outcome or overestimate the impact of a negative outcome (ie, impact bias). As another example, parents may choose more action-oriented interventions, such as proceeding with resuscitation, as opposed to less action-oriented options, such as comfort care for their child, resulting in commission bias (Table 1). We think greater recognition of the cognitive shortcuts used by both parents and clinicians can help signal the opportunity to provide better support by (1) slowing down the decision-making process to ensure adequate elicitation of parental values and time for emotional processing, and (2) perspective taking.When medical decision-making for children with SNI is time-sensitive, it may increase the likelihood that cognitive shortcuts are not only used during the decision-making process but, also, misapplied.7 To the extent possible, slowing down the decision-making process may therefore have many potential benefits. Slowing down may allow parents time to further consider medical information and how it relates to their values, allowing them to be more deliberative in their decision-making. These deliberations may yield deeper insight into what different decisions mean for their child and family. This does not necessarily mean that parents will make different decisions but, rather, that there will be space to explore options more fully. Similarly, slowing down may allow more time for clinicians to elicit family values and explore how they may impact medical recommendations. Although uncertainty and preferences will remain, slowing down may provide an opportunity for parents and clinicians to further evaluate different treatment options together.Time may also give space for parents and clinicians to process their emotions.7 Clinicians can acknowledge emotions by empathizing and aligning with parents. In the case presented, a clinician might say, "I am sorry to share this hard news. I can't imagine how you both might be feeling." By slowing down, clinicians can also reflect on their own emotions and how they may result in the use of cognitive shortcuts that may, ultimately, be influencing their medical recommendations. The act of slowing down may enable the emotional processing necessary to understand how cognitive shortcuts are impacting decision-making, particularly when emotions result in biased decisions that do not reflect values.Through an appreciation of cognitive shortcuts and how their misapplication can result in bias, clinicians may also be better able to understand parent perspectives during the decision-making process. Recognition of cognitive shortcuts may indicate the need for engaged curiosity, a key component of empathy toward the experiences and perspectives of other people.8 This curiosity can be facilitated by questions like "what worries you most right now?" and "what are you most hoping for?": answers to which may generate a better understanding of parental decisions, even when those decisions differ from clinician recommendations.It is important to consider the use of cognitive shortcuts and the biases that can result with their use by parents and clinicians in decision-making for infants and children. Recognizing their use can improve decision-making in stressful, emotionally charged, preference-sensitive situations. We have highlighted how cognitive shortcuts and biases can manifest in the context of an infant with SNI. In clinical practice, clinicians should recognize the use of cognitive shortcuts not only by parents but, also, in their own deliberations. This requires an open attitude, sense of self-awareness, and humility toward the values and preferences of others. In these instances, clinicians can slow down the decision-making process to elicit values and preferences and support the emotional processing that enables perspective taking. This can be accomplished by presenting future decisions well in advance with families, sharing information in a separate conversation then when decisions need to be made, and listening with curiosity to emotions and values. By examining the use of cognitive shortcuts and bias, we may be able to diminish stress during decision-making and provide the empathetic support essential to the care of children, their parents, and their clinicians.

Breast cancer patients wish to participate in the treatment decision-making, but the perceived participation was inconsistent with the willingness, leading to poor patient outcomes. The aims of this study were to explore the perceived participation in the primary surgery decision-making among Chinese patients with early-stage breast cancer (BCa) and to analyze the relationships of demographic and clinical factors, participation competence, self-efficacy, social support, and doctors' promotion of participation with the guidance of the capability, opportunity, motivation-behavior system (the COM-B system). Paper surveys were used to collect data from 218 participants. The participation competence, self-efficacy, social support, and the doctor facilitation of involvement were evaluated to measure factors related to perceived participation among early-stage BCa. Perceived participation was low, and participants with a high level of participation competence, self-efficacy, and social support and who were employed and had a higher education level and higher family income perceived higher participation in primary surgery decision-making. Perceived participation was low and may be facilitated by patients' internal and external factors during the decision-making process. Health professionals should be aware that patient participation in decision-making is a type of self-care health behavior, and targeted decision support interventions should be provided to facilitate participation. Patient-perceived participation may be evaluated from the perspective of self-care management behaviors among BCa patients. Nurse practitioners should emphasize their important roles in providing information, patient education, and psychological support to better contribute to the course of the treatment decision-making process for BCa patients who faced primary surgery.

Patient participation in decision-making has produced many debates among health care professionals. The research evidence concerning patient participation in decision-making is not clear, and shows conflicting results. To identify to what extent cancer patients participate in decision-making and to what extent background characteristics, information obtained and relationships with staff explain cancer patients' participation in decision-making. A structured questionnaire based on earlier research and qualitative interviews was designed. The questionnaire was completed by 273 cancer patients who were inpatients or outpatients in haematology, oncology clinics and other clinics at two university hospitals in Finland. The questionnaire consisted of five areas: (1) demographic data; (2) mood; (3) information obtained; (4) relationships with staff; and (5) decision-making. The scale used was ordinal. The data were analysed using descriptive statistics and nonparametric tests such as Mann-Whitney U-test, Kruskall-Wallis, and Wilcoxon matched-pairs signed-rank tests. The majority of the respondents perceived that they had participated in making treatment decisions at least to some extent, together with the physician. In decision-making about nursing care, respondents felt that they had participated most in decisions about personal hygiene, rest and sleep. Respondents' physical condition, marital status, age and time since diagnosis, as well as information obtained and relationships with staff, were associated with participation in decision-making. This study provided evidence that some cancer patients participated in decision-making and felt participation to be important. Staff played a crucial role in patient participation in decision-making. In future, staff should work to improve cancer patients' opportunities to participate in decision-making in order that those who wish to be involved can do so.

This thesis explores the power of people with dementia who live alone to participate in decision-making processes with advocacy support. Although the benefits of consumer participation in healthcare decisions include improvements in health outcomes, greater emotional well-being and long-term cost savings, people with dementia who live alone are frequently marginalised in the decision-making process. This is significant given that this group is increasing in number and is overrepresented in statistics on early admission to institutional care. This study specifically examined how dementia affected the agency of people living alone, and how a dementia advocacy service influenced their participation in decision-making. The study employed multiple methods to collect qualitative data from nine people with dementia living alone who have used advocacy services, four dementia advocates and twenty-one healthcare professionals involved in meeting careassessment needs and in referring clients to the advocacy service. A critical realist theoretical framework and a process of retroduction were used to develop an explanatory theory. This study found that dementia significantly constrained agency and led to a narrowing of the social world of participants with dementia. Orientations of agency towards the present and future improved power of agency as did a person’s belief in their ability to take action, and advocacy was shown to positively influence these factors. Participation in decision-making was found to be extremely important to participants with dementia but sociocultural factors restricted their participation. Lack of understanding of the variation in decision-making capacity associated with dementia and a strong cultural focus on risk avoidance resulted in low prioritisation of decision-making involvement by healthcare professionals. In contrast, advocacy facilitated participation through trusting relationships, spending time to understand the person’s wishes and promoting the rights of the person with dementia living alone. These findings suggest the need for healthcare services to focus on enhancing agency, to encourage supportive decision-making, and to balance safety and emotional consequences of decisions when working with people with dementia living alone. Further, although advocacy provided benefits in protecting and facilitating participation, future success is contingent upon the establishment of a common understanding of advocacy and the advocate role and a universal approach to capacity and risk assessments.

Parents' attitudes and psychological adjustment during their child's hospitalization in a pediatric neurorehabilitation care unit are key aspects for the child's adherence to care and the impact of the disease. The aim of this study was to examine the relationship between parenting stress, coping style, and negative psychological outcomes in families of children admitted for the first time to a pediatric neurorehabilitation care unit. This is an observational study. Pediatric neurorehabilitation care unit. One hundred twenty-four parents of children diagnosed with neurodevelopmental or neurological conditions. Parents completed standardized questionnaires assessing parenting stress, coping style, anxiety and depressive symptoms. We found that parents of children with neurodevelopmental conditions showed more emotion-focused coping strategies (P=0.016) and depressive symptoms (P=0.01) compared with parents of children with neurological conditions. Hierarchical regression analyses showed that emotion- and avoidance-oriented coping style and socioeconomic status are crucial factors in the adjustment process of parents of children with neurodevelopmental conditions. By contrast, parenting stress and child difficulties were the most significant predictors of negative psychological outcomes in parents with neurological conditions. This study sought to develop more understanding of the relationship among parenting stress, coping, and anxiety or depressive symptoms in parent of children hospitalized in a pediatric neurorehabilitation care unit. We suggest that examining parents may increase our understanding of the interplay between child and parent functioning in families with children admitted for the first time to a pediatric neurorehabilitation care unit. Identify these predictors might help professionals to develop screening procedures to identify parent at high risk for anxiety or depression, and to conduct early interventions to reduce uncertainty and maladaptive coping strategies that may influences rehabilitation process.

Corresponding Author: Lee Morris, 1000 Blythe Blvd, PO Box 32861, Charlotte NC 28203, 919-260-8623, Lee.morris@atriumhealth.org Alternative Corresponding Author: Jennifer Schwieger, 1000 Blythe Blvd, Charlotte, NC 28203, 704-381-6331, Jennifer.schwieger@atriumhealth.org Funding Source: Heineman-Robicsek Foundation No conflicts of interest. Background Latin America has high rates of antimicrobial resistance among hospitalized patients, including neonates and children, and many barriers to antimicrobial stewardship implementation. Understanding local patterns of antimicrobial utilization is an essential component of antimicrobial stewardship efforts. Inappropriate antimicrobial prescribing is described in some low-resource settings, but data are lacking in Central America, particularly Guatemala. This study evaluated antimicrobial utilization at a tertiary hospital in Guatemala to identify targets for antimicrobial stewardship interventions. Methods This single-center point prevalence study evaluated antimicrobial utilization for all patients admitted to the Hospital of Escuintla, Guatemala. Demographic, microbiologic, and antimicrobial use data were assessed for all hospitalized patients from 1/23/2023 to 1/25/2023. Overall prevalence of antimicrobial use, indications and appropriateness of antimicrobials prescribed, and rate of appropriate culture attainment were analyzed for all patients and by patient care unit. Results Over the 3-day period, a total of 178 patients and 169 antimicrobial prescriptions were evaluated. Seventy-two percent of pediatric (N=41/57) and 60% of adult patients (N=73/121) were administered at least one antimicrobial (overall 64% of patients received antimicrobials). Antimicrobial utilization differed between adult and pediatric units (Figure 1). The most frequently utilized antimicrobials in pediatric patients were piperacillin-tazobactam (67%), amikacin (39%), ampicillin-sulbactam (28%) and metronidazole (28%). Broad spectrum antimicrobial use in pediatric units was largely driven by the neonatal intensive care unit (NICU) in which piperacillin-tazobactam accounted for 44% of antimicrobial prescriptions. The most frequent antimicrobial indications in pediatric units were pulmonary (30%), sepsis (20%) and abdominal (15%). In contrast, musculoskeletal (17%) and surgical prophylaxis (15%) were the most frequent indications in adults. Approximately half of all antimicrobial use was deemed inappropriate by reviewers. Rates of inappropriateness were similar between pediatric (53%) and adult (52%) patients (Table 1). The most common reasons an antimicrobial was classified as inappropriate were incorrect dose (41%), spectrum too narrow (22%), spectrum too broad (17%), prolonged duration (17%), and antibiotic not indicated (17%). More specifically, among patients in the pediatric intensive care unit (PICU) and pediatric progressive care unit, antibiotic not indicated was the most common reason for inappropriate use (41%). NICU inappropriate use was most often due to spectrum being too broad (80%), while spectrum too narrow was most common in non-ICU pediatric patients (50%). Finally, 60% of patients had cultures obtained appropriately (74% of pediatric and 42% of adult patients). Conclusion Rates of overall antimicrobial prescribing and inappropriate antimicrobial use were high amongst hospitalized adult and pediatric patients. These findings will be used to inform development of targeted antimicrobial stewardship interventions, such as dissemination of dosing information, treatment algorithms for common infections and surgical prophylaxis guidance, that may improve prescribing. Application of this point prevalence approach should be considered for other Guatemalan healthcare institutions to identify opportunities to optimize the use of antimicrobials. Figure 1. Inpatient Antimicrobial Utilization at a Tertiary Hospital in Guatemala (N=169) AMK, amikacin; AMX, amoxicillin; AMP, ampicillin; SAM, ampicillin/sulbactam; AZM, azithromycin; CFR, cefadroxil; CFZ, cefazolin; CFM, cefixime; CTX, cefotaxime; CAZ, ceftazidime; CRO, ceftriaxone; CIP, ciprofloxacin; CLI, clindamycin; DCX, dicloxacillin; FLC, fluconazole; FOF, fosfomycin; GEN, gentamicin; LVX, levofloxacin; MEM, meropenem; MTZ, metronidazole; PEN, penicillin; TZP, piperacillin/tazobactam; RIF, rifampin; SXT, sulfamethoxazole/trimethoprim; TGC, tigecycline; VAN, vancomycin Table 1. Antimicrobial Evaluation

Factors associated with trial recruitment, preferences, and treatments received were elucidated in a comprehensive cohort study

It is almost five years since the previous Coalition government embarked on an agenda for the radical reform of the family law system, with parents the target of the reform agenda and children the espoused beneficiaries. In this article, we argue that little is known about the experience of children in relation to their participation in such decision-making, or about how the amendments are working from their perspective. We look critically at what we mean by children’s ‘participation’ in the context of family law and examine recent, if still limited, research evidence that draws on children’s perspectives. We focus particularly on the tension between children’s need and desire to participate in decision-making processes and the limited opportunity for most to do so, positing a number of reasons why such a gap might exist when children have been foregrounded within the reform agenda. We conclude with some issues that beg further attention if we are to realise a family law system that ‘works better’ for children and young people.

Background and Aims Acute kidney injury (AKI) is a frequent complication in neonates and infants after congenital heart disease surgery, with great impact on morbidity and mortality. Peritoneal dialysis (PD) is the renal replacement therapy of choice, as it allows continuous gentle ultrafiltration with minimal impact on hemodynamic status. However, there is no standardized prescription. The present study aimed to describe our experience of using PD in the management of AKI after cardiac surgery in pediatric patients and the postoperative outcomes. Method Single-center cross-sectional study including 21 children undergoing cardiac surgery between 2017 and 2022, in a congenital heart disease reference center. Demographic and clinical data were collected from the electronic records. Results Of the 21 patients treated with PD, 11 were female. Mean age was 32 ± 45 days and median weight was 3.4 kg (IQR 0.5). All pregnancies had been full-term with a mean birth weight of 3.2 ± 0.3 kg. No congenital urinary tract anomalies had been previously documented. Previous history of AKI was present in 2 patients. Transposition of the great arteries was the most common surgical indication (52%). RACHS-1 score was ≥4 in 12 patients and median PRISM-IV score was 6.5% (IQR 6). Cardiopulmonary bypass was performed in 19 patients with a mean time of 181 ± 72 minutes and a mean aortic clamping time of 94 ± 29 minutes. All patients required inotropic support after cardiac surgery with ≥2 drugs, for 197 ± 136 hours. Median time with mechanical ventilation support was 126 hours (IQR 288) and median length of stay at the intensive care unit (ICU) was 9 days (IQR 15.3).The indications for PD initiation were anuria (66.7%), oliguria (23.8%) and fluid overload (9.5%). Median time between cardiac surgery and AKI diagnosis was 2.5 hours (IQR 8.8) and between AKI diagnosis and PD initiation was 1.8 hours (IQR 4.3). Median duration under dialysis was 2 days (IQR 3.5). Exchange volume of dialysate varied between 6 and 15 mL/kg at the beginning of PD. In 11 patients, this volume was progressively increased to a maximum of 60 mL/kg (minimum: 30 mL; maximum: 120 mL). Continuous veno-venous hemodiafiltration was required in 3 patients, mainly due to mechanical catheter dysfunction. Complications related to PD occurred in 5 patients: 1 patient developed peritonitis, 1 patient had mechanical catheter dysfunction and 3 patients had peri-catheter leak. Complete recovery of renal function was achieved in 14 patients. Longer time on PD was associated with lower weight before surgery (p = 0.04), longer time on mechanical ventilation and inotropic support (p < 0.001), and longer stay at the ICU (p < 0.001). Time on inotropic support could predict time on PD using a multiple regression model (adjusted R2 = 59%, p = 0.003), adjusted to cardiopulmonary bypass time, time on mechanical ventilation support and weight before surgery (adjusted ß = 0.7, p = 0.005). Eight patients died during hospitalization, due to multiorgan failure (38%), cardiogenic shock (38%), disseminated intravascular coagulation (13%) and septic shock (13%). Longer cardiopulmonary bypass time was associated with in-hospital mortality (149 ± 53 vs 235 ± 46, p = 0.004). Both the time between AKI diagnosis and PD initiation and the time on PD were not associated with in-hospital mortality. Conclusion Our study suggests that PD is a safe and effective dialysis modality in the management of post-cardiac surgery AKI in pediatric population. Early identification of high-risk infants is important to implement preventive measures.

Older people's reasoning for resuscitation preferences and their role in the decision-making process

PMS103 - Patients’ Preferences for Rheumatoid Arthritis Treatments and their Participation in the Treatment Decision-Making Process. A Systematic Review of the Literature

The purpose of this quality improvement project was to develop an evidence-based protocol designed for pressure injury prevention for neonates and children in a pediatric cardiac care unit located in the Midwestern United States. The ultimate goal of the project was dissemination across all pediatric critical care and acute care inpatient arenas, but the focus of this initial iteration was neonates and children requiring cardiac surgery, extracorporeal support in the form of extracorporeal membranous oxygenation and ventricular assist devices in the cardiac care unit, or cardiac transplantation. A protocol based upon the National Pressure Ulcer Advisory Panel guidelines was developed and implemented in the pediatric cardiac care unit. Pediatric patients were monitored for pressure injury development for 6 months following protocol implementation. During the 40-month preintervention period, 60 hospital-acquired pressure injuries (HAPIs) were observed, 13 of which higher than stage 3. In the 6-month postintervention period, we observed zero HAPI greater than stage 2. We found that development and use of a standardized pressure injury prevention protocol reduced the incidence, prevalence, and severity of HAPIs among patients in our pediatric cardiac care unit.

While gender and professional status influence how decisions are made, the role played by health care professionals’ informational role self-efficacy appears as a central construct fostering participation in decision-making. The goal of this study is to contribute to a better understanding of how gender and profession affect the role of self-efficacy in sharing expertise and decision-making. Validated questionnaires were answered by a cross-sectional sample of 108 physicians and nurses working in mental health care teams. A moderated mediation analysis was performed. Results reveal that the impact of sharing knowledge on informational role self-efficacy is negative for nurses. Being a nurse negatively affects the relation between informational role self-efficacy and participating in decision-making. Informational role self-efficacy is also a strong positive predictor of participation in decision-making for male physicians but less so for female physicians.

Performance of chest compressions with the use of a new audio–visual feedback device: A randomized manikin study in health care professionals

In-hospital cardiac arrest: characteristics and outcome after implementation of systematic practice-oriented training