Asthma deaths in children in New South Wales 2004-2013: Could we have done more?

AIMS: The aim of this study was to characterise the deaths of children from asthma in New South Wales (NSW) over the last 10 years and ascertain whether there were modifiable factors that could have prevented the deaths. METHODS: The hospital medical records, coronial reports, immunisation records and all relevant correspondence from general practitioners, medical specialists and hospitals were reviewed for children who died with asthma in the 10 years (2004-2013). RESULTS: In 10 years, there were 20 deaths (0-7 per year) with a male predominance (70%) occurring in children aged 4-17 years. Sixteen (80%) had persistent asthma and 4 (20%) had intermittent asthma. The majority (55%) had been hospitalised for asthma in the preceding 12 months, 25% in the preceding 6 weeks. The majority (55%) was aged 10-14 years. Ninety percent were atopic. Psychosocial issues were identified in the majority (55%) of families. Forty percent had a child protection history. Seventy-five percent had consulted a general practitioner in the year before their death, 45% had a current written asthma action plan and 50% had not seen a paediatrician ever in relation to their asthma. Of the 16 children at school, the schools were aware of the asthma in 14 (88%) cases, but only half had copies of written asthma plans. CONCLUSIONS: Improved communication and oversight between health-care providers, education and community protection agencies could reduce mortality from asthma in children.

How certain are you, doctor?

OBJECTIVE: To argue that pediatric intensive care physicians have difficulties in responding to parental questions about prognostic certainty, and that this constitutes a failure in their professional responsibility to parents. CONCLUSIONS: These difficulties arise from three sources: 1) the structure and organization of contemporary intensive care, 2) the neglect of prognostication, and 3) the failure to distinguish scientific certainty from practical certainty. It is proposed that an understanding of these issues will enable physicians to respond to the parental question "How certain are you, doctor?" with more authenticity and sincerity.

Intercontinental differences in end-of-life attitudes in the pediatric intensive care unit: results of a worldwide survey.

OBJECTIVE: To examine intercontinental differences in end-of-life practices in pediatric intensive care units. DESIGN: An international survey. The on-line questionnaire consisted of two case scenarios with five questions each. The scenarios described the management of children in pediatric intensive care units and the questions dealt with the decision-making process and the modalities of forgoing life support. SETTING: The participants at the 5th World Congress on Pediatric Critical Care Medicine organized by the World Federation of Pediatric Intensive and Critical Care Societies (June 2007, Geneva, Switzerland) were invited to participate. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Six hundred sixty seven complete questionnaires were received from 71 countries, which were grouped into six continents: Europe (52.7%), North America (17.9%) and South America (9.5%), Asia (7.6%), Australia (6%), and Middle East (4.3%). In both scenarios, physicians played the major role in decision making in all of the continents. However, parents from North America, Australia, the Middle East, and Asia seem to be more involved in the decision-making process, compared with those from Europe and South America. In cases of septic shock, caregivers from Europe and South America are more prone to forego life support despite parents' wishes. In North America and Australia, parents' presence during cardiopulmonary resuscitation is usually accepted (89.7% and 92.3%, respectively), whereas their presence is less accepted in Asia (54%) and Europe (54.8%), or much less accepted in South America (25.8%) and the Middle East (7.1%). In both scenarios, the option to withhold rather than withdraw life supports was more commonly chosen among all continents, except South America, where the withdrawal of life support was more often proposed (51.6% vs. 45.2%). CONCLUSIONS: This study confirms that important intercontinental differences exist toward end-of-life issues in pediatric intensive care. Although the legal and ethical situation is rapidly evolving, a certain degree of paternalism seems to persist among European and South-American caregivers. This study suggests that ethical principles depend on the cultural roots of countries or continents, emphasizing the need to foster dialogue on end-of-life issues around the world to learn from each other and improve end-of-life care in pediatric intensive care units.

Withdrawal and limitation of life-sustaining treatments in a paediatric intensive care unit and review of the literature.

OBJECTIVES: To examine withdrawal and limitation of life-sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. DESIGN: Retrospective chart review and literature review. SOURCE OF DATA: Review of 12 months of patient records from a tertiary Australian children's teaching hospital. Medline search using relevant key words focusing on death and PICU. RESULTS: Twenty of 27 deaths (74%) followed either WLST (n = 16) or Do Not Resuscitate (DNR) orders (n = 4); five children failed cardiopulmonary resuscitation (CPR); and two children were brain-dead. Meetings between the medical team and family were documented for 15 of 16 children (93.8%) before treatment was withdrawn. The average time between withdrawal of life support and death was 13 min. A review of the English-language literature revealed that 18-65% occurring in PICUs worldwide follow WLST and/or institution of DNR orders. Rates were higher (30-65%) in North America and Europe than elsewhere. Most PICU deaths occurred within 3 days of admission. North American and British parents appear to be involved in decisions regarding withdrawal and limitation of treatment more often than parents in other countries. CONCLUSIONS: Withdrawal and limitation of life-sustaining treatment was more common in an Australian children's hospital ICU than has been reported from other countries. Details of discussion with parents, including the basis for any decision to WLST, were almost always documented in the patient's medical record.

Intensive care experience with sclerotherapy for cervicofacial lymphatic malformations.

OBJECTIVE: To describe a cohort of patients needing intensive care support after sclerotherapy for cervicofacial lymphatic malformations. DESIGN: Retrospective review of case records of patients undergoing sclerotherapy between January 2004 and November 2006. SETTING: A tertiary, university-affiliated, pediatric teaching hospital. PATIENTS: Five patients needing admission to a pediatric intensive care unit (PICU) following sclerotherapy with OK432. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Five patients needed a total of 13 PICU admissions. Ages ranged from 4 months to 19 months. All patients had extensive lesions that involved the airways, mediastinum, or floor of the mouth, documented by magnetic resonance imaging. Nine admissions involved elective intubation and ventilation following sclerotherapy due to the extent of lesions. There were four urgent admissions to the PICU with respiratory distress ranging from 3 to 18 days after sclerotherapy. The mean duration of admission was 7 days (total 93 days, range 2-22 days). Total ventilated hours were 1656 hrs with a range of 16.5-370 hrs per admission. Multiple procedures, such as drainage of cysts and further sclerotherapy procedures, were performed before extubation on the PICU. CONCLUSIONS: Children with extensive disease and airway involvement need multiple PICU admissions. The potential for life-threatening respiratory embarrassment is unpredictable following sclerotherapy. Consideration should be given to performing further sclerotherapy while the patients are intubated in the PICU. The PICU provides a safe and secure environment for such procedures.

Deletion 22q11.2 syndrome--implications for the intensive care physician.

OBJECTIVE: To report on the experience of a pediatric intensive care unit (PICU) with patients with deletion 22q11.2 syndrome: 1) to delineate the clinical characteristics and management of these patients; 2) to assess whether these patients were managed appropriately, especially in terms of blood transfusion; and 3) to make recommendations for PICU management. DESIGN: Retrospective assessment of medical records of patients with fluorescent in situ hybridization-proven 22q11 deletion admitted to the PICU at the Children's Hospital at Westmead, Sydney. SETTING: PICU in a tertiary university-affiliated children's hospital. PATIENTS: Sixty-five consecutive admissions in 40 patients with diagnosis of 22q11 deletion over a 4-yr period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Thirty-seven (57%) of 65 admissions were postoperative cardiac surgical and accounted for the most common reason for admission to the PICU. Thirteen (20%) admissions were for velopharyngeal/laryngeal problems. Four (6%) admissions were associated with hypocalcemia, with two being first presentations. Five (12.5%) of 40 patients had immune dysfunction, one of whom developed cytomegalovirus pneumonitis. Twenty-nine (72.5%) patients received blood products either immediately before PICU admission or in the PICU. Of these, 16 received nonirradiated cellular blood products. There were two deaths from complications of congenital heart disease. CONCLUSIONS: PICUs need to be familiar with deletion 22q11.2 syndrome, especially the recommended use of irradiated and cytomegalovirus-seronegative blood components in these immunocompromised patients. The guidelines were inconsistently followed in the cohort of patients reported here. The extent of this problem may be more widespread in PICUs, and we recommend that individual units review their practice in this regard. Hypocalcemia may manifest at any time, and a regular survey of the calcium status is required in the intensive care setting. Admission to PICU should afford the opportunity to invite subspecialty referral and optimize extended care.

Critical illness polyneuropathy and myopathy in pediatric intensive care: A review.

OBJECTIVE: To review the medical literature on critical illness polyneuropathy and myopathy in childhood. DATA SOURCE: Medline and EMBASE were searched using the following terms: critical illness (neuropathy, polyneuropathy, and myopathy), critical care (neuropathy, polyneuropathy, and myopathy), acute myopathy, acute necrotizing myopathy, children, and pediatric. The references listed in publications thus identified were also reviewed. STUDY SELECTION AND DATA EXTRACTION: All studies relating to pediatric critical illness polyneuropathy and myopathy were included. The adult literature was also reviewed as to the current understanding of critical illness polyneuropathy and myopathy. DATA SYNTHESIS: Critical illness polyneuropathy and critical illness myopathy are well recognized in adults, in whom they commonly cause generalized weakness and muscle wasting, with failure to wean from mechanical ventilation. Critical illness polyneuropathy and critical illness myopathy are reported in 32-100% of critically ill adult patients ventilated for >3 days. There is significant clinical and neurophysiologic overlap between the two conditions, such that the term critical illness polyneuropathy and myopathy (CIPNM) is often used. Critical illness polyneuropathy and critical illness myopathy have only occasionally been reported in childhood, and little is known of their prevalence or clinical significance in this population. This article summarizes the pediatric literature on critical illness polyneuropathy and critical illness myopathy and highlights areas for future research in critically ill children. CONCLUSIONS: Critical illness polyneuropathy and myopathy may cause significant morbidity in critically ill children. These conditions seem to be clinically and electrophysiologically similar in children and adults, but prospective studies of these entities are required to better characterize their frequency, natural history, and clinical significance in pediatric practice.

The history of the patient history since 1850.

For the ordinary doctor the taking of a medical patient history is and has been one of the fundamental procedures. This article looks at instructions on the taking of a history in medical texts, to delineate what happened to the position of the patient history in clinical assessment with the increased emphasis on physical examination that began around the middle of the nineteenth century. The analysis reveals that the taking of a history remained important, with a consistent approach from 1850 to the end of the twentieth century. The patient history became incorporated into the physician's examination as another set of observations and signs, thus producing two histories: a superficial, chaotic story presented by the patient, and a deep, "true" history revealed by the skill of the physician. Within pediatrics, the primacy of the physical examination appears to have been asserted well before the introduction of history-taking.

Affirming parental love in the pediatric intensive care unit.

OBJECTIVE: To argue that that there has been a remarkable absence of discussion of the importance of parental love in the pediatric intensive care literature, and that this silence has been to the detriment of both medical and nursing pediatric intensive care practice. CONCLUSIONS: Research and anecdotal literature to date have focused on the negative changes that occur in the parental role during a child's pediatric intensive care unit admission. In contrast, the love that a parent holds for his or her child is profoundly positive and stable; it is not a "role" that can be taken away or threatened. It is proposed that the recognition and acknowledgment of this love will alter the critical care encounter for parents, physicians, and nurses and result in a better understanding by the staff of parental attitudes and behaviors. This may be particularly effective in situations where it is perceived that unreasonable demands are being made for futile therapy.

Taking a medical history in childhood illness: representations of parents in pediatric texts since 1850.

The pediatric clinical encounter is initiated when a sick child is presented to a physician and the physician takes a history from the parent. This article casts the physician's construction of that encounter in a central role in the history of the theory and practice of children's medicine. The focus is on what physicians have written about the conduct of such encounters, and specifically on their attitudes to and instructions for the taking of a history. This analysis reveals that medical writings on the taking of a medical history provide a window into how pediatric writers wanted their discipline to be conducted, what they identified as the normative principles of pediatric practice, and how they portrayed parents. The texts show a striking continuity in the ambivalence expressed by practitioner authors about the parental role in the clinical assessment of sick children. What emerges is both a regret that the physician must be dependent on parental history for clinical assessment, and a message that any doctor dealing with children should both value the parental history and distrust it. Because history taking is a fundamental, core medical activity, these normative principles and representations of parents were dispersed easily, widely, and unconsciously within pediatric practice. They also provide a link to the wider contexts of physicians' involvement in child rearing, the influence of psychiatry, and the fundamental gender structure of the clinical encounter.

Clinical assessment of cardiac performance in infants and children following cardiac surgery.

OBJECTIVE: To compare clinical assessment of cardiac performance with an invasive method of haemodynamic monitoring. DESIGN AND SETTING: Prospective observational study in a 16-bed tertiary paediatric intensive care unit. PATIENTS AND PARTICIPANTS: Infants and children undergoing cardiopulmonary bypass and surgical repair of congenital heart lesions. INTERVENTIONS: Based on physical examination and routinely available haemodynamic monitoring in the paediatric intensive care unit, medical and nursing staff assessed cardiac index, systemic vascular resistance index and volume status. Clinical assessment was compared with cardiac index, systemic vascular resistance index and global end diastolic volume index, obtained by femoral artery thermodilution. MEASUREMENTS AND RESULTS: A total of 76 clinical estimations of the three parameters were made in 16 infants and children undergoing biventricular repair of congenital heart lesions. Agreement was poor between clinical and invasive methods of determining all three studied parameters of cardiac performance. Cardiac index was significantly underestimated clinically; mean difference was 0.71 l min(-1) m(-2) (95% range of agreement +/-2.7). Clinical estimates of systemic vascular resistance (weighted kappa=0.15) and volume status (weighted kappa=0.04) showed poor levels of agreement with measured values and were overestimated clinically. There was one complication related to a femoral arterial catheter and one device failure. CONCLUSIONS: Routine clinical assessment of parameters of cardiac performance agreed poorly with invasive determinations of these indices. Management decisions based on inaccurate clinical assessments may be detrimental to patients. Invasive haemodynamic monitoring using femoral artery thermodilution warrants cautious further evaluation as there is little agreement with clinical assessment which is presently standard accepted care in this patient population.

Recombinant activated factor VII in paediatric cardiac surgery.

OBJECTIVE: To review the use of recombinant activated factor VII in paediatric cardiac surgery. DESIGN: Retrospective chart review. SETTING: Paediatric intensive care unit in a stand-alone university-affiliated children's hospital. PATIENTS AND PARTICIPANTS: Cardiac surgical patients who received recombinant activated factor VII (rFVIIa, NovoSeven; NovoNordisk, Copenhagen, Denmark) between June 2002 and June 2003 at The Children's Hospital at Westmead. RESULTS: Six children undergoing cardiac surgery received rFVIIa. Recombinant activated factor VII was administered if bleeding was excessive and persisted despite appropriate investigation and attention to haemostasis by surgical and medical staff. An intravenous dose of 180 microg/kg was given and repeated 2 h later. All of the six patients responded well to rFVIIa with achievement of haemostasis. No adverse events were noted. CONCLUSIONS: Recombinant activated factor VII achieved haemostasis in six paediatric cardiac surgical patients. Good outcomes and no adverse events were noted in these children.

Influenza A associated morbidity and mortality in a Paediatric Intensive Care Unit.

This paper reports the clinical features and outcome of all children with a laboratory proven diagnosis of influenza A virus infection admitted to a major Paediatric Intensive Care Unit (PICU) in 2003. Eight of the 22 patients with influenza A virus infection (A/Fujian/411/2002-like type) presented with encephalopathy and three of the 22 patients died. This can be compared with 44 admissions and seven (16%) deaths of patients with influenza virus admitted in the same PICU in the preceding 15 years. In the present cohort, four (18%) of the 22 patients, including one child who died, should have received influenza vaccine according to the current Australian immunisation recommendations. We have no documented evidence that any of the 22 children received influenza vaccination. During the 2003 influenza season there was an increased number of children admitted to our PICU with influenza A infection and an increased number of deaths compared with previous years. Influenza infection causes significant morbidity and mortality in young children, most of whom are not currently recommended for annual influenza vaccination.

Quality of life of survivors of pediatric intensive care.

OBJECTIVE: Measuring outcome in pediatric intensive care is necessary to equate the high cost of treatment with benefits to the patient. Although mortality rates and morbidity are relatively insensitive measures of the benefits of treatment, quality of life measurement gives insight into the long-term outcomes. The aim of this study was to investigate the long-term quality of life outcome of children admitted to a pediatric intensive care unit. DESIGN: Prospective survey. SETTING: A 13-bed pediatric intensive care unit in a university-affiliated, tertiary referral children's hospital. PATIENTS: Patients were 432 children discharged from the pediatric intensive care unit between May 1992 and April 1994. INTERVENTIONS: Quality of life was measured by using the Royal Alexandra Hospital for Children Measure of Function. The scale has two components, the first part completed by the clinician after parent interview and the second part completed separately by the parent. MEASUREMENTS AND MAIN RESULTS: Parents of 432 children were contacted between 3 and 24 months after discharge. Twenty-seven children (6.3%) had died after discharge from the pediatric intensive care unit; 59.3% (256) had scores indicating a normal quality of life, and 32.4% (140) had a fair quality of life with ongoing health, social, or cognitive problems requiring some intervention. Two percent of survivors (nine children) had scores indicating a poor quality of life as they had continued to experience significant or disabling health problems requiring hospitalization or the equivalent. Predictors of poor quality of life included presence of comorbidities, increased length of stay, and a diagnostic category of malignancy. Diagnostic categories of respiratory, trauma, and cardiac dysfunction were associated with a better outcome. CONCLUSIONS: Our results indicate that the long-term outcome in terms of quality of life after admission to a pediatric intensive care unit is good or normal for the majority of surviving children. Those children with a poor outcome are likely to have significant comorbidities or a diagnosis of malignancy.