Wynne Morrison

Impact of Family Presence During Pediatric Intensive Care Unit Rounds on the Family and Medical Team

OBJECTIVES: Our objectives were to determine the impact of family presence during PICU rounds on family satisfaction, resident teaching, and length of rounds and to assess factors associated with family satisfaction. METHODS: This was an observational study of a convenience sample of morning work rounds in a PICU, followed by surveys of family members of patients in the unit and residents who had been present for rounds. RESULTS: A total of 411 patient encounters were observed, 98 family questionnaires were fully completed, and 33 resident questionnaires were completed. Ninety-eight percent of family members liked to be present for rounds. On the first day of admission, family members were less likely to understand the plan (P = .03), to feel comfortable asking questions (P = .007), or to want bad news during rounds (P = .009). They were more likely to have privacy concerns (P = .02) and to want 1 individual to convey the plan after rounds (P = .01). Higher education level was associated with decreased privacy concerns (P = .002) but did not affect understanding of the plan. Fifty-two percent of residents perceived that teaching was decreased with families present. Time spent with individual patients was not increased by family member presence (P = .12). CONCLUSIONS: Family satisfaction is high, but families of patients on the first day of admission may need special attention. The medical team should conduct rounds in a manner that addresses the privacy concerns of families. Residents often think that teaching is decreased when families are present.

A multi-institutional high-fidelity simulation "boot camp" orientation and training program for first year pediatric critical care fellows.

Objective: Simulation training has been used to integrate didactic knowledge, technical skills, and crisis resource management for effective orientation and patient safety. We hypothesize multi-institutional simulation-based training for first year pediatric critical care (PCC) fellows is feasible and effective. Design: Descriptive, educational intervention study. Setting: The simulation facility at the host institution. Interventions: A multicentered simulation-based orientation training “boot camp” for first year PCC fellows was held at a large simulation center. Immediate posttraining evaluation and 6-month follow-up surveys were distributed to participants. Measurements and Main Results: A novel simulation-based orientation training for first year PCC fellows was facilitated by volunteer faculty from seven institutions. The two and a half day course was organized to cover common PCC crises. High-fidelity simulation was integrated into each session (airway management, vascular access, resuscitation, sepsis, trauma/traumatic brain injury, delivering bad news). Twenty-two first year PCC fellows from nine fellowship programs attended, and 13 faculty facilitated, for a total of 15.5 hours (369 person-hours) of training. This consisted of 2.75 hours for whole group didactic sessions (17.7%), 1.08 hours for a small group interactive session (7.0%), 4.67 hours for task training (30.1%), and 7 hours for training (45.2%) with high-fidelity simulation and crisis resource management. A “train to success” approach with repetitive practice of critical assessment and interventional skills yielded higher scores in training effectiveness in the end-of-course evaluation. A follow-up survey revealed this training was highly effective in improving clinical performance and self-confidence. Conclusions: The first PCC orientation training integrated with simulation was effective and logistically feasible. The train to success concept with repetitive practice was highly valued by participants. Continuation and expansion of this novel multi-institutional training is planned.

Shared Decision Making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement.

Objectives:Shared decision making is endorsed by critical care organizations; however, there remains confusion about what shared decision making is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define shared decision making, recommend when shared decision making should be used, identify the range of ethically acceptable decision-making models, and present important communication skills. Design:The American College of Critical Care Medicine and American Thoracic Society Ethics Committees reviewed empirical research and normative analyses published in peer-reviewed journals to generate recommendations. Recommendations approved by consensus of the full Ethics Committees of American College of Critical Care Medicine and American Thoracic Society were included in the statement. Main Results:Six recommendations were endorsed: 1) Definition: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient’s values, goals, and preferences. 2) Clinicians should engage in a shared decision making process to define overall goals of care (including decisions regarding limiting or withdrawing life-prolonging interventions) and when making major treatment decisions that may be affected by personal values, goals, and preferences. 3) Clinicians should use as their “default” approach a shared decision making process that includes three main elements: information exchange, deliberation, and making a treatment decision. 4) A wide range of decision-making approaches are ethically supportable, including patient- or surrogate-directed and clinician-directed models. Clinicians should tailor the decision-making process based on the preferences of the patient or surrogate. 5) Clinicians should be trained in communication skills. 6) Research is needed to evaluate decision-making strategies. Conclusions:Patient and surrogate preferences for decision-making roles regarding value-laden choices range from preferring to exercise significant authority to ceding such authority to providers. Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate.

Parental decision-making preferences in the pediatric intensive care unit.

Objective: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. Design: Institutional Review Board–approved prospective cohort study conducted between December 2009 and April 2010. Setting: Pediatric intensive care unit at The Children’s Hospital of Philadelphia. Participants: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. Interventions: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. Measurements and Main Results: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. Conclusions: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.

Training in difficult conversations: a national survey of pediatric hematology-oncology and pediatric critical care physicians.

BACKGROUND In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE We surveyed graduates of pediatric hematology/oncology and critical care fellowships regarding communication training to describe teaching methods, assess which were helpful, and determine whether comfort level is related to training experiences. METHODS A 12-question Web survey was sent to physicians completing fellowship in the previous 5 years. RESULTS Of 345 fellows identified, 171 (50%) responded. Prior training included observing senior physicians (100%), being observed (78%), reading (56%), lectures (46%), role-play (20%), workshops (16%), simulation (13%), and videos (13%). Observing senior physicians was thought most helpful. More years since training (p < 0.0005) and frequent difficult conversations (p = 0.009) were predictors of current comfort. Only workshops were associated with feeling better prepared at the end of training (p = 0.019). CONCLUSIONS Training may help physicians feel prepared for difficult conversations, but ongoing experience was strongly associated with comfort level.

Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

BackgroundParents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling.DiscussionRegoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care.SummaryThe psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.

An under-recognized benefit of cardiopulmonary resuscitation: organ transplantation.

Objective:For many patients who suffer cardiac arrest, cardiopulmonary resuscitation does not result in long-term survival. For some of these patients, the evolution to donation of organs becomes an option. Organ transplantation after cardiopulmonary resuscitation is not reported as an outcome of cardiopulmonary resuscitation and is therefore overlooked. We sought to determine the number and proportion of organs transplanted from donors who received cardiopulmonary resuscitation after a cardiac arrest in the United States and to compare survival of organs from donors who had cardiopulmonary resuscitation (cardiopulmonary resuscitation organs) versus donors who did not have resuscitation (noncardiopulmonary resuscitation organs). Data Source:We retrospectively analyzed a nationwide, population-based database of all organ donors and recipients from the United Network for Organ Sharing between July 1999 and June 2011. Study Selection:We queried the database for all organs from deceased donors between July 1999 and June 2011. Organs from living donors (n = 76,015), all organs with missing cardiopulmonary resuscitation data (n = 59), and organs procured following a circulatory determination of death (n = 12,030) were excluded. Data Extraction:We report donor demographic data and organ survival outcomes among organs from donors who received cardiopulmonary resuscitation (cardiopulmonary resuscitation organs) and donors who had not received cardiopulmonary resuscitation (noncardiopulmonary resuscitation organs). Graft survival of cardiopulmonary resuscitation organs versus noncardiopulmonary resuscitation organs was compared using Kaplan-Meier estimates and stratified log-rank test. Data Synthesis:In the United States, among the 224,076 organs donated by donors who were declared dead by neurologic criteria between 1999 and 2011, at least 12,351 organs (5.5%) were recovered from donors who received cardiopulmonary resuscitation. Graft survival of cardiopulmonary resuscitation organs was not significantly different than that of noncardiopulmonary resuscitation organs. Conclusions:At least 1,000 organs transplanted per year in the United States (> 5% of all organs transplanted from patients declared dead by neurologic criteria) are recovered from patients who received cardiopulmonary resuscitation. Organ recovery and successful transplantation is an unreported beneficial outcome of cardiopulmonary resuscitation.

Change in regional (somatic) near-infrared spectroscopy is not a useful indictor of clinically detectable low cardiac output in children after surgery for congenital heart defects

Objective: Near-infrared spectroscopy correlation with low cardiac output has not been validated. Our objective was to determine role of splanchnic and/or renal oxygenation monitoring using near-infrared spectroscopy for detection of low cardiac output in children after surgery for congenital heart defects. Design: Prospective observational study. Setting: Pediatric intensive care unit of a tertiary care teaching hospital. Patients: Children admitted to the pediatric intensive care unit after surgery for congenital heart defects. Interventions: None. Measurements and Main Results: We hypothesized that splanchnic and/or renal hypoxemia detected by near-infrared spectroscopy is a marker of low cardiac output after pediatric cardiac surgery. Patients admitted after cardiac surgery to the pediatric intensive care unit over a 10-month period underwent serial splanchnic and renal near-infrared spectroscopy measurements until extubation. Baseline near-infrared spectroscopy values were recorded in the first postoperative hour. A near-infrared spectroscopy event was a priori defined as ≥20% drop in splanchnic and/or renal oxygen saturation from baseline during any hour of the study. Low cardiac output was defined as metabolic acidosis (pH <7.25, lactate >2 mmol/L, or base excess ⩽−5), oliguria (urine output <1 mL/kg/hr), or escalation of inotropic support. Receiver operating characteristic analysis was performed using near-infrared spectroscopy event as a diagnostic test for low cardiac output. Twenty children were enrolled: median age was 5 months; median Risk Adjustment for Congenital Heart Surgery category was 3 (1–6); median bypass and cross-clamp times were 120 mins (45–300 mins) and 88 mins (17–157 mins), respectively. Thirty-one episodes of low cardiac output and 273 near-infrared spectroscopy events were observed in 17 patients. The sensitivity and specificity of a near-infrared spectroscopy event as an indicator of low cardiac output were 48% (30%–66%) and 67% (64%–70%), respectively. On receiver operating characteristic analysis, neither splanchnic nor renal near-infrared spectroscopy event had a significant area under the curve for prediction of low cardiac output (area under the curve: splanchnic 0.45 [95% confidence interval 0.30–0.60], renal 0.51 [95% confidence interval 0.37–0.65]). Conclusions: Splanchnic and/or renal hypoxemia as detected by near-infrared spectroscopy may not be an accurate indicator of low cardiac output after surgery for congenital heart defects.

The Bereaved Parent Needs Assessment: A new instrument to assess the needs of parents whose children died in the pediatric intensive care unit

Objectives:To evaluate the reliability and validity of the Bereaved Parent Needs Assessment, a new instrument to measure parents’ needs and need fulfillment around the time of their child’s death in the pediatric intensive care unit. We hypothesized that need fulfillment would be negatively related to complicated grief and positively related to quality of life during bereavement. Design:Cross-sectional survey. Setting:Five U.S. children’s hospital pediatric intensive care units. Subjects:Parents (n = 121) bereaved in a pediatric intensive care unit 6 months earlier. Interventions:Surveys included the 68-item Bereaved Parent Needs Assessment, the Inventory of Complicated Grief, and the abbreviated version of the World Health Organization Quality of Life questionnaire. Each Bereaved Parent Needs Assessment item described a potential need and was rated on two scales: 1) a 5-point rating of importance (1 = not at all important, 5 = very important) and 2) a 5-point rating of fulfillment (1 = not at all met, 5 = completely met). Three composite scales were computed: 1) total importance (percentage of all needs rated ≥4 for importance), 2) total fulfillment (percentage of all needs rated ≥4 for fulfillment), and 3) percent fulfillment (percentage of important needs that were fulfilled). Internal consistency reliability was assessed by Cronbach’s &agr; and Spearman-Brown–corrected split-half reliability. Generalized estimating equations were used to test predictions between composite scales and the Inventory of Complicated Grief and World Health Organization Quality of Life questionnaire. Measurements and Main Results:Two items had mean importance ratings <3, and 55 had mean ratings >4. Reliability of composite scores ranged from 0.92 to 0.94. Total fulfillment was negatively correlated with Inventory of Complicated Grief (r = −.29; p < .01) and positively correlated with World Health Organization Quality of Life questionnaire (r = .21; p < .05). Percent fulfillment was also significantly correlated with both outcomes. Adjusting for parent’s age, education, and loss of an only child, percent fulfillment remained significantly correlated with Inventory of Complicated Grief but not with World Health Organization Quality of Life questionnaire. Conclusions:The Bereaved Parent Needs Assessment demonstrated reliability and validity to assess the needs of parents bereaved in the pediatric intensive care unit. Meeting parents’ needs around the time of their child’s death may promote adjustment to loss.

End-of-Life Practices Among Tertiary Care PICUs in the United States: A Multicenter Study

Objective: To describe variability in end-of-life practices among tertiary care PICUs in the United States. Design: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. Setting: Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network. Patients: Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. Interventions: None. Measurements and Main Results: Two hundred and seventy-five (2.7%; range across sites, 1.3–5.0%) patients died during their hospital stay; of these, 252 (92%; 76–100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47–76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12–46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42–59%), failed cardiopulmonary resuscitation for 53 (19%; 12–28%), limitation of support for 46 (17%; 7–24%), and brain death for 35 (13%; 8–20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17–88%; p < 0.001). Of these, 20 donated (20%; 0–64%). Sixty-two deaths (23%; 10–53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17–75%; p < 0.001). Of autopsies requested, 53 (67%; 50–100%) were performed. Conclusions: Most deaths in Collaborative Pediatric Critical Care Research Network–affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.