Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses.

OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to contextualize patterns in quality of dying and death (QODD) scoring. DESIGN: This mixed methods study reports on a cross-sectional survey of PCICU staff involved in patient deaths. SETTING: Single, quaternary PCICU from 2019-2021. PARTICIPANTS: Multidisciplinary staff (bedside nurses, allied health professionals, and medical practitioners) rated QODD and voluntarily added free-text responses. We derived descriptive categories of free-text responses using content analysis. Response sentiment was classified as positive, negative or both positive and negative. We compared category and sentiment frequency by discipline, EOL medical intensity, years of experience and QODD score quartiles. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 60 deaths and 713 completed staff surveys, 269 (38%) contained free-text responses, including 103 of 269 (38%) from nurses. Of six qualitative categories (i.e., relational dynamics, clinical circumstances, family experiences, emotional expressions, temporal conditions, and structural/situational factors), relational dynamics was most frequent (173 responses). When compared by discipline, family experiences were more common in nursing responses than medical practitioners or allied health. High intensity was associated with infrequent discussion of family experience and greater focus on temporal conditions and clinical circumstances. Emotional expressions and temporal conditions were more common in lowest QODD quartile surveys. Although 45% staff responses contained both sentiments, relational dynamics and family experiences were more likely positive. Negative sentiments were more common in the lowest QODD quartile surveys and responses containing temporal conditions or structural/situational factors. CONCLUSIONS: Synergistic relationships between the multidisciplinary team and family shaped clinician's positive responses. Attention to team dynamics may be a crucial ingredient in interventions to improve EOL care. Our data support that team-based education initiatives should consider differential foci between disciplines and EOL characteristics.

Development of an Institution-Wide Pediatric End-of-Life Summit.

End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized education, a small group of bereavement coordinators created an institution-wide pediatric EOL summit at a large urban pediatric teaching hospital. One hundred forty-five clinicians from 14 diverse disciplines attended the first annual pediatric EOL summit. A survey was sent to the participants for feedback. The survey results suggested an overwhelmingly positive response to the summit. Continuing to provide this educational conference is critical to improving care for patients and families, particularly at the end of life.

Staff Perceptions of Dying and Death in a Pediatric Cardiac Intensive Care Unit During COVID-19.

BACKGROUND: Strict visitor restrictions during the COVID-19 pandemic have been associated with staff moral distress in numerous clinical settings, yet little is known about effects on perceptions of pediatric end-of-life care. OBJECTIVE: To determine the effect of COVID-19 visitor restrictions on perceptions of quality of dying and death. METHODS: This was a cross-sectional survey of interdisciplinary staff caring for dying children in a cardiac intensive care unit with flexible visitation allowances compared with published policies reported in the literature at the time. RESULTS: No significant difference in perceptions of quality of dying and death was found between the prepandemic and pandemic periods despite similar clinical care provision. The relatively less stringent allowances at end of life did not adversely affect staff risk for infection. CONCLUSIONS: The findings support affording some flexibility to visitation at end of life, which may mitigate negative staff perceptions of quality of dying and death. With the profound effects of COVID-19 on end-of-life care provision, these results may have implications for future global challenges.

A Multimodal Approach to Training Coronavirus Disease (COVID-19) Processes Across Four Intensive Care Units.

Background: Coronavirus disease (COVID-19) required innovative training strategies for emergent aerosol generating procedures in intensive care units. This manuscript summarizes institutional operationalization of COVID-specific training, standardized across four intensive care units. Methods & Results: An interdisciplinary team collaborated with the Simulator Program and OpenPediatrics refining logistics using process maps, walkthroughs and simulation. A multimodal approach to information dissemination, high-volume team training in modified resuscitation practices and technical skill acquisition included instructional videos, training superusers, small-group simulation using a flipped classroom approach with rapid cycle deliberate practice, interactive webinars, and cognitive aids. Institutional data on application of this model are presented. Conclusion: Success was founded in interdisciplinary collaboration, resource availability and institutional buy in.

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit.

Importance: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. Objectives: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. Design, Setting, and Participants: This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. Exposures: Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. Main Outcomes and Measures: PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. Results: Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). Conclusions and Relevance: In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.

Palliative Care Referrals in Cardiac Disease.

OBJECTIVES: With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD). METHODS: In this retrospective cohort study, we compared inpatient pediatric (<21 years) deaths due to AHD in 2 separate 3-year epochs: 2007-2009 (early) and 2015-2018 (late). Demographics, disease burden, medical interventions, mode of death, and hospital charges were evaluated for temporal changes and PPC influence. RESULTS: Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [P = .02] and $25 634 [P = .02]). CONCLUSIONS: Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care.

Education and Training in Pediatric Cardiac Critical Care: International Perspectives.

Pediatric cardiac intensive care is an evolving and maturing field. There have been advances in education and training in recent years, specifically progress toward standardization of curricula, competencies, and certifications. International partnerships have fostered similar advancements in less resourced countries. For all disciplines and levels of expertise, simulation remains a versatile and effective modality in education. Although there is improved standardization for the training of physicians and nurses, the certification process remains undetermined.

Education and Training in Pediatric Cardiac Critical Care.

Pediatric cardiac critical care is a new and emerging field. There is no standardization to the current education provided, and high-quality patient outcomes require such standardization. For physicians, this includes fellowship training, specific competencies, and a certification process. For advanced practice providers, a standardized curriculum as well as a certification process is needed. There is evidence that supports a finding that critical care nursing experience may have a positive impact on outcomes from pediatric cardiac surgery. A rigorous orientation and meaningful continuing education may augment that. For all disciplines and levels of expertise, simulation is a useful modality in the education in pediatric cardiac critical care.

Norwood Procedure for Palliation of Hypoplastic Left Heart Syndrome: Right Ventricle to Pulmonary Artery Conduit vs Modified Blalock-Taussig Shunt.

Patients with hypoplastic left heart syndrome undergo a series of operations to separate the pulmonary and systemic circulations. The first of at least 3 operations occurs in the newborn period, with a stage I palliation. The goal of stage I palliation is to provide pulmonary blood flow and create an unobstructed systemic outflow tract. Advances in surgical techniques and intraoperative and postoperative care have helped decrease morbidity and mortality for patients with hypoplastic left heart syndrome who have the stage I Norwood operation, but the patients continue to be at increased risk for hemodynamic collapse and adverse outcomes. This article discusses risk factors, surgical approach, postoperative nursing and medical management strategies, differences between and outcomes for the Norwood operation with the right ventricle to pulmonary artery conduit and the Norwood operation with a modified Blalock-Taussig shunt.

Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact. INTERVENTION: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites. MEASUREMENTS AND MAIN RESULTS: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0-30 d). According to parents, 47% of children suffered "a great deal," "a lot," or "somewhat" during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as "poor" or "fair." Most parents (84%) described the quality of care delivered as "very good" or "excellent." CONCLUSIONS: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.

Physical therapy and rehabilitation issues for patients supported with extracorporeal membrane oxygenation.

Extracorporeal Membrane Oxygenation (ECMO) is widely used to support patients who have failed conventional therapies for cardio-respiratory failure. Patient immobility during management of critical illness and ECMO support can result in physical impairment that can lead to prolonged hospitalization and poor functional outcomes for ECMO survivors. Although little information regarding the role of physical therapy in improving functional outcomes for ECMO patients is available, early intervention with physical therapy may decrease duration of hospitalization and improve functional outcomes for patients supported with ECMO.

Patterns of care at end of life in children with advanced heart disease.

OBJECTIVE: To describe patterns of care for pediatric patients with advanced heart disease who experience in-hospital death. DESIGN: Retrospective single-institution medical record review. SETTING: A tertiary care pediatric hospital. PARTICIPANTS: All patients younger than 21 years who died in the inpatient setting between January 1, 2007, and December 31, 2009, with primary cardiac diagnoses or who had ever received a cardiology consult (N=468). After excluding patients with significant noncardiac primary diagnoses, 111 children formed the analytic sample. MAIN OUTCOME MEASURE: In-hospital deaths of children with heart disease during a 3-year period. RESULTS: Median age at death was 4.8 months (age range,1 day to 20.5 years), with 84 deaths (75.7%) occurring before age 1 year. Median length of terminal hospital stay was 22 days (range, 1-199 days). Diagnoses included 84 patients (75.7%) with congenital heart disease, 10 (9.0%)with cardiomyopathy/myocarditis, 9 (8.1%) with pulmonary hypertension, and 8 (7.2%) with heart transplants.Sixty-two patients (55.9%) had received cardio-pulmonary resuscitation during their last hospital admission. At the end of life, 21 children (18.9%) had gastrostomy tubes and 26 (23.4%) had peritoneal drains.Most patients (91.9%) received ventilation, with half also receiving mechanical circulatory support. Eighty-three patients (74.8%) experienced additional end-organ failure. Classified by mode of death, 76 patients (68.5%) had disease-directed support withdrawn, 28 (25.2%) died during resuscitation, and 7 (6.3%) died while receiving comfort care after birth. Eighty-three percent of parents were present at the time of death. CONCLUSION: Infants and children who die of advanced heart disease frequently succumb in the intensive care setting with multisystem organ failure and exposure to highly technical care.

Simulation-based training delivered directly to the pediatric cardiac intensive care unit engenders preparedness, comfort, and decreased anxiety among multidisciplinary resuscitation teams.

OBJECTIVES: Resuscitation of pediatric cardiac patients involves unique and complex physiology, requiring multidisciplinary collaboration and teamwork. To optimize team performance, we created a multidisciplinary Crisis Resource Management training course that addressed both teamwork and technical skill needs for the pediatric cardiac intensive care unit. We sought to determine whether participation improved caregiver comfort and confidence levels regarding future resuscitation events. METHODS: We developed a simulation-based, in situ Crisis Resource Management curriculum using pediatric cardiac intensive care unit scenarios and unit-specific resuscitation equipment, including an extracorporeal membrane oxygenation circuit. Participants replicated the composition of a clinical team. Extensive video-based debriefing followed each scenario, focusing on teamwork principles and technical resuscitation skills. Pre- and postparticipation questionnaires were used to determine the effects on participants' comfort and confidence regarding participation in future resuscitations. RESULTS: A total of 182 providers (127 nurses, 50 physicians, 2 respiratory therapists, 3 nurse practitioners) participated in the course. All participants scored the usefulness of the program and scenarios as 4 of 5 or higher (5 = most useful). There was significant improvement in participants' perceived ability to function as a code team member and confidence in a code (P < .001). Participants reported they were significantly more likely to raise concerns about inappropriate management to the code leader (P < .001). CONCLUSIONS: We developed a Crisis Resource Management training program in a pediatric cardiac intensive care unit to teach technical resuscitation skills and improve team function. Participants found the experience useful and reported improved ability to function in a code. Further work is needed to determine whether participation in the Crisis Resource Management program objectively improves team function during real resuscitations.

Management of the pediatric postoperative cardiac surgery patient.

Optimal management of the postoperative pediatric cardiac surgical patient requires a thorough understanding of patient anatomy, physiology, surgical repair or palliation, and clinical condition. This necessitates a dedicated team of clinicians including skilled nurses, physicians, and respiratory therapists specialized in the care of patients who have complex congenital heart disease. This article provides an overview of the multisystemic risk factors and consequences associated with cadiopulmonary bypass and cardiac surgery. An evaluation of cardiac hemodynamics and a review of major organ systems are included. Essential assessment information and interventional strategies for managing the pediatric postoperative cardiac surgery patient are detailed.