Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population.

CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPTs). More information is needed to inform and optimize collaborative care. OBJECTIVES: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment. METHODS: Single-center retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables. RESULTS: Among 1804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics. CONCLUSION: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.

Thematic Analysis of Interprofessional Provider Perceptions of Pediatric Death.

PURPOSE: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations. DESIGN AND METHODS: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death. RESULTS: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture. CONCLUSIONS: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers. PRACTICE IMPLICATIONS: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.

Empowering Residents to Process Distressing Events: A Debriefing Workshop.

Introduction: Adverse events are common in medical training and practice, which can lead to distress among providers. One method of coping with distress is debriefing, which has been shown to improve participants' ability to manage their grief and has been associated with lower rates of burnout. Methods: We designed this 2-hour workshop to provide senior residents with the knowledge and skills to lead debriefing sessions within their teams. In this curriculum, we have included a workshop facilitator's guide, didactic information reviewing the components of effective debriefing, a video of a sample debriefing, two videos demonstrating potential debriefing challenges, small-group practice cases, a debriefing pocket card resource, and pre- and postworkshop survey evaluations. Results: Twenty second-year pediatric and medicine-pediatric residents were included in the pilot study of this workshop. They reported an average of 2.2 (SD = 2.4) distressing events in the preceding month. None of the residents had received previous training in debriefing, and only 10% had previously led a debriefing session. Pre- and postintervention surveys demonstrated significant increases in resident comfort in and likelihood of leading a debriefing session, as well as in recognition of personal distress. Discussion: This workshop serves as one model to enhance training and education regarding debriefing in residency training programs. The issue of distress is not unique to residents, and although this training was initially designed for that population, it could easily be adapted to reach a broader audience of medical trainees and providers.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children.

Given the limited number of pediatric-specific palliative care programs, palliative care providers of all disciplines may be called on to care for infants, children, and adolescents with serious illness. This article provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, pediatric developmental considerations, use of medical technology and complexities of symptom management in children with serious illness, hospice utilization, as well as pointers for discussions with families regarding a patient's quality of life and goals of care.

Using the LACE Score as a Predictor of Clinical Outcomes in Patients Referred for Inpatient Palliative Care Consultation: A Single-Center Experience.

BACKGROUND: Readmissions and death for palliative care patients are common and costly outcomes for hospitals, patients, and/or caregivers. Predicting which patients are likely to be readmitted or die within 30 days would help allocate resources and aid in patient disposition planning. Few factors have been strongly correlated with predicting which patients will be readmitted or die within 30 days of hospital discharge. The LACE (Length of Stay, Acuity of admission, Charlson comorbidity index, Emergency department use) score has been validated in medical/surgical patients; however, it has not been evaluated in the palliative care population. OBJECTIVE: To evaluate the LACE score in palliative care population. DESIGN: This study was a single-center retrospective cohort design. SETTING/PATIENTS: Patients were identified based on their consultation to an inpatient palliative care service. MEASUREMENTS: Thirty-day readmissions, 30-day mortality, length of stay, acuity of admission, Charlson comorbidity index, emergency department utilization, and demographic information. RESULTS: The LACE score was not an accurate predictor of clinical outcomes in the palliative care population. Patients who were readmitted or died within 30 days tended to be younger. Patients who were readmitted within 30 days tended to have increased emergency department use in the previous 6 months. CONCLUSIONS: Our study demonstrates the LACE score may not be a sensitive predictor of clinical outcomes in our institution's palliative care patients. This may be due to the complexity of the required care in this population; thus, other factors should be investigated to determine accurate predictors of patient outcomes to better allocate resources.

Identifying the Types of Support Needed by Interprofessional Teams Providing Pediatric End-of-Life Care: A Thematic Analysis.

BACKGROUND: Despite the number of interprofessional team members caring for children at the end of life, little evidence exists on how institutions can support their staff in providing care in these situations. OBJECTIVE: We sought to evaluate which aspects of the hospital work environment were most helpful for multidisciplinary team members who care for patients at the end of life and identify areas for improvement to better address staff needs. DESIGN: Qualitative thematic analysis was completed of free-text comments from a survey distributed to interprofessional staff members involved in the care of a recently deceased pediatric patient. A total of 2701 surveys were sent; 890 completed. Free-text responses were provided by 306 interprofessional team members. SETTING/SUBJECTS: Interprofessional team members involved in the care of a child who died at a 348 bed academic children's hospital in the Midwestern United States. MEASUREMENTS: Realist thematic analysis of free-text responses was completed in Dedoose using a deductive and inductive approach with line-by-line coding. Descriptive statistics of demographic information was completed using Excel. RESULTS: Thematic analysis of the 306 free-text responses identified three main support-related themes. Interprofessional team members desire to have (1) support through educational efforts such as workshops, (2) support from colleagues, and (3) support through institutional practices. CONCLUSIONS: Providers who participate in end-of-life work benefit from ongoing support through education, interpersonal relationships, and institutional practices. Addressing these areas from an interprofessional perspective enables staff to provide the optimal care for patients, patients' families, and themselves.

Variability in Threshold for Medication Error Reporting Between Physicians, Nurses, Pharmacists, and Families.

BACKGROUND: Voluntary medication error reporting is an imperfect resource used to improve the quality of medication administration. It requires judgment by front-line staff to determine how to report enough to identify opportunities to improve patients' safety but not jeopardize that safety by creating a culture of "report fatigue." OBJECTIVE: This study aims to provide information on interpretability of medication error and the variability between the subgroups of caregivers in the hospital setting. METHODS: Survey participants included nursing, physician (trainee and graduated), patient/families, pharmacist across a large academic health system, including an attached free-standing pediatric hospital. Demographics and survey questions were collected and analyzed using Fischer's exact testing with SAS v9.3. RESULTS: Statistically significant variability existed between the four groups for a majority of the questions. This included all cases designated as administration errors and many, but not all, cases of prescribing events. Commentary provided in the free-text portion of the survey was sub-analyzed and found to be associated with medication allergy reporting and lack of education surrounding report characteristics. CONCLUSION: There is significant variability in the threshold to report specific medication errors in the hospital setting. More work needs to be done to further improve the education surrounding error reporting in hospitals for all noted subgroups.

Multiorgan eosinophilic infiltration after initiation of clozapine therapy: a case report.

BACKGROUND: The eosinophilic response to clozapine is well described in the literature, causing a variety of responses, from serositis to colitis. However, there are not case reports describing a clozapine-induced marked eosinophilia resulting in multiorgan dysfunction. CASE PRESENTATION: In this case report, we describe a 24 year old Caucasian male who presented with severe systemic eosinophilia resulting in eosinophilic GI tract infiltration, myocarditis, pericardial and pleural effusions with dramatic improvement following drug withdrawal. CONCLUSIONS: Clozapine associated eosinophilia should be suspected in the setting of eosinophilic infiltration of multiple organs.

Single-Center Experience Providing Palliative Care to Pediatric Patients with End-Stage Renal Disease.

BACKGROUND: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. OBJECTIVE: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. DESIGN/SUBJECTS: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team. RESULTS: The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions. CONCLUSIONS: This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.

National Survey on Pediatric Acute Agitation and Behavioral Escalation in Academic Inpatient Pediatric Care Settings.

BACKGROUND: Pediatric acute agitation and behavioral escalation (PAABE) is common and disruptive to pediatric inpatient health care. There is a paucity of literature on PAABE in noncritical care inpatient pediatric care settings with little consensus on its evaluation and management. METHODS: In January 2016, a 34-question survey was e-mailed to pediatric hospitalists and consultation-liaison psychiatrists through their respective professional listservs. Excluded responses included incomplete surveys, and surveys from providers in community care settings. The survey consisted of multiple-choice questions, rating scales, and free-text responses relating to the identification, education, and evaluation and management of PAABE at the respondent's respective hospital. RESULTS: Responses were obtained from 38 North American academic children's hospitals. Of the respondents, 69.3% were pediatric hospitalists and 30.7% were pediatric psychiatry consultants. Most respondents practice in urban areas (84.2%), and in hospitals with ≥100 beds (89.4%). Overall, 84.2% of the respondents encountered PAABE at least once a month and as frequently as every week. Most respondents (70.0%) rated PAABE as an 8 or higher on a 10-point Likert scale. Despite being highly important and common, 53.9% of respondents do not screen for risk factors for PAABE, 63.6% reported no formal process to facilitate caregiver involvement in managing PAABE, and 59.7% indicated no physician training in PAABE evaluation and management. CONCLUSION: Many pediatric hospitals identify PAABE as a great concern, yet there is little training, screening, or standardization of care in PAABE. There is a need to consolidate existing knowledge regarding PAABE, while developing enhanced collaboration, training, and standardized practice in inpatient PAABE.

SAFEST: Use of a Rubric to Teach Safety Reporting to Pediatric House Officers.

BACKGROUND: Among the many modalities of error detection in academic pediatric hospitals, patient safety reporting is an important component, particularly for unexpected events. Residents recognize the importance of reporting but cite some barriers to doing so. A rubric was developed to guide resident reporting and streamline information gathering in patient safety reports. The rubric used the acronym SAFEST as a reminder to include 6 key elements:1. Staff involved in the incident.2. Actual event description.3. Follow-up initiated.4. Effect on patient.5. Standard of care described.6. To-do/suggestions for improvement. OBJECTIVES: This study was designed to determine if the addition of this educational rubric into a standard quality improvement curriculum improves the consistency of information documented in patient safety reports as a subset of a larger quality improvement project aimed at improving safety reporting. METHODS: A team of faculty members analyzed individual resident error reports for adherence to the 6 tenets of the SAFEST mnemonic. RESULTS: From April to October of 2014, 2015, and 2016, a convenience sample of 131, 110, and 132 reports, respectively, were extracted and analyzed. For the rates of reporting "staff involved" and "standard of care," the differences over time were significant, both with P values < 0.001. After training, residents were 2.2 times more likely to report on the "staff involved" in the error and 1.8 times more likely to report the "standard of care." DISCUSSION: These results describe successful education on a rubric designed to improve the content of patient safety reports.

Continuous Lidocaine Infusions to Manage Opioid-Refractory Pain in a Series of Cancer Patients in a Pediatric Hospital.

BACKGROUND: Research on the safety and efficacy of continuous lidocaine infusions (CLIs) for the treatment of pain in the pediatric setting is limited. This article describes a series of pediatric oncology patients who received lidocaine infusions for refractory, longstanding, cancer-related pain. PROCEDURE: This is a retrospective review of patients who underwent lidocaine infusions to manage severe, opioid-refractory, cancer-related pain. Four patients ranging in age from 8 to 18 years were admitted to a pediatric hospital for their medical conditions and/or pain management. Structured chart review established demographic and diagnosis information, infusion rates, side effects, and efficacy of infusions in providing pain relief. Lidocaine bolus doses, infusion rates, serum concentrations, and subjective pain scores were analyzed. RESULTS: Median pain scores prior to lidocaine infusions were 8/10, falling to 2/10 at the infusion termination (P < 0.003), and rising to 3/10 in the first 24 hr after lidocaine (P < 0.029 compared to preinfusion pain). The infusions were generally well tolerated, with few side effects noted. In most cases, the improvement in pain scores persisted beyond termination of the infusion. CONCLUSIONS: CLIs were a helpful adjuvant in the four cases presented and may be an effective therapy for a more diverse array of refractory cancer pain. The majority of patients experienced pain relief well beyond the metabolic elimination of the lidocaine, corroborating a modulation effect on pain windup. Additional research regarding infusion rates, serum concentrations, side effects, and outpatient follow-up in a larger group of patients will provide additional insight into the role and safety of this therapy in children.

Care of the complex chronically ill child by generalist pediatricians: lessons learned from pediatric palliative care.

BACKGROUND AND OBJECTIVE: Parents of children with complex chronic conditions report fragmented care, unmet medical needs, and financial strain from health care costs. The aim of this study was to identify both prevalent themes discussed during pediatric palliative care consultation of patients with complex chronic conditions cared for by pediatric generalists and variation in consultation content by age and timing of consultation in disease course. METHODS: Forty randomly selected initial inpatient or outpatient consultation notes authored by the pediatric palliative care team at an academic, tertiary care children's hospital. Inclusion required that patients were primarily cared for by general pediatricians, pediatric hospitalists, or pediatric intensivists, instead of subspecialists. Qualitative analysis by 5 team members utilizing consensus-based findings was used to develop themes. Descriptive statistics were used to describe variations in themes across age and disease course. RESULTS: Common themes included thorough review of patient baseline functioning, current symptoms, assessment of family's understanding of the prognosis of the patient, coordination of communication with other medical teams and outpatient health care services, consideration of caregiver resources and burdens, and offering a framework for decision-making. Variation in consult themes by age/disease course included more discussion of communication problems and symptom management when patients were at their baseline, but otherwise little variation was found. CONCLUSIONS: Common themes covered in initial consultations correspond with documented unmet needs for chronically ill children. There was no significant variation in consultation themes by age/disease course, suggesting that generalists could broadly apply palliative care techniques to improve family-centered care.

Use of intravenous acetaminophen (paracetamol) in a pediatric patient at the end of life: case report.

BACKGROUND: For the better part of 100 years, acetaminophen (or paracetamol as it is known outside of the United States) has been a common first-line analgesic in pediatrics and is typically well tolerated with minimal side effects. Its use as an anti-pyretic is also well-documented and thus it is used broadly for symptom control in the general pediatric population. DISCUSSION: In pediatric palliative care, acetaminophen is also used as an adjuvant to opioid therapy for pain as well as an anti-pyretic. For many pediatric patients near end-of-life, however, the ability to tolerate oral intake is diminished and rectal suppository administration can be distressing or contraindicated as in the setting of neutropenia, thus limiting use of acetaminophen by its usual routes. In Europe and Australia, an intravenous formulation of acetaminophen has been used for many years and has only recently become available in the United States. CONCLUSION: Here, we describe a case using intravenous acetaminophen in a pediatric patient at the end of life.

Neonatal circumcision: is feeding behavior altered?

BACKGROUND: The effect of circumcision on feeding behavior in the newborn period is unknown. We hypothesized that circumcision would not have a significant effect on newborn feeding. METHODS: This prospective study analyzed the effect of circumcision on neonatal feeding behavior. Inclusion criteria were healthy male infants WHO were exclusively bottle-fed and underwent a circumcision before discharge from the newborn nursery. We collected data (N = 42) on gestational age, birth weight, Apgar scores, maternal age, gravid status, anesthesia used during delivery, analgesia used after circumcision, time of circumcision, and volume and frequency of feeding before and after circumcision. Data were analyzed by using paired t tests, multivariable regression analysis, and analysis of variance (with SPSS version 18). Significance was P < .05 (2-tailed α). RESULTS: Descriptive statistics for the entire group (N = 42) are as follows: mean ± SD gestational age: 38.7 ± 1.2 weeks; mean birth weight: 3.3 ± 0.4 kg; maternal age: 26.7 ± 6.3 years; baseline feeding (mean of first 2 feedings before circumcision): 24.5 ± 9.9 mL; mean first feeding after circumcision: 21.7 ± 11.9 mL; and mean second feeding: 26.7 ± 13.5 mL. Forty-eight percent of patients increased their feeding volume after circumcision compared with baseline, and 52% of patients decreased their feeding volume, which persisted with the second feeding. There was no statistical difference between the baseline and first feeding (P = .11) or second feeding (P = .22). CONCLUSIONS: Our data suggest that circumcision does not alter feeding after circumcision. This information will be useful in counseling families regarding circumcision in the newborn period.

Use of simulated electronic mail (e-mail) to assess medical student knowledge, professionalism, and communication skills.

BACKGROUND: Physicians communicate with patients using electronic mail (e-mail) with increasing frequency. Communication skills specific to e-mail do not appear to be taught explicitly in medical school. Therefore, the effect of an instructive session on effective e-mail communication was examined. METHOD: Four simulated e-mails from a parent were developed. Students responded to an initial e-mail and then participated in a session on effective e-mail communication. Responses to a final e-mail were assessed using a rubric with subscores for medical knowledge, communication, and professionalism. RESULTS: Performance improved from the first to final e-mail response in the overall score and in each subscore. Improvement was sustained over the course of the academic year. Interrater reliability revealed good agreement. CONCLUSIONS: Communicating effectively with patients via e-mail is not intuitive but can be taught. It is feasible to introduce responses to a simulated e-mail case in a clinical clerkship as an assessment tool.