Alan R. Fleischman

New and Lingering Controversies in Pediatric End-of-Life Care

Objectives. Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study’s objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. Methods. Three children’s hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. Results. A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, “At times, I have acted against my conscience in providing treatment to children in my care.” For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, ∼20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, “Sometimes I feel we are saving children who should not be saved,” as agreed with the statement, “Sometimes I feel we give up on children too soon.” However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, “Sometimes I feel the treatments I offer children are overly burdensome.” Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92–98%, depending on specialty) and nurses (range: 83–85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. Conclusions. There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians’ regard for the dead-donor rule.

Disclosure of illness status to children and adolescents with HIV infection

Many children with human immunodeficiency virus (HIV) infection and acquired immunodeficiency syndrome are surviving to middle childhood and adolescence. Studies suggest that children who know their HIV status have higher self-esteem than children who are unaware of their status. Parents who have disclosed the status to their children experience less depression than those who do not. This statement addresses our current knowledge and recommendations for disclosure of HIV infection status to children and adolescents.

Rickets with alopecia: An inborn error of vitaminD metabolism

Rickets with alopecia, an inborn error of vitamin D metabolism, is described in two sisters. The rachitic disorder began during the first year of life and was refractory to 50,000 IU of vitamin D2/day. Surprisingly, both children had marked elevations in serum concentrations of 1,25-(OH)2D. Although the molecular basis for this disorder is not evident to date, intestinal end-organ unresponsiveness to exceedingly high levels of 1,25-(OH)2D was present, in addition to hyporesponsiveness of bone to these high levels of the hormone, since normocalcemia was maintained despite elevated serum levels of PTH. Therapy with oral 1,25-(OH)2D3 failed to reverse the disorder, but oral phosphorus supplements resulted in significant radiographic and clinical improvement.

A simple estimate of glomerular filtration rate in low birth weight infants during the first year of life: Noninvasive assessment of body composition and growth

The management of the preterm infant often requires rapid assessment of glomerular filtration rate (GFR). We sought to develop a screening test using GFR = kL/Pcr, where GFR is expressed as ml/min/1.73 m2, L is body length in centimeters, Pcr is plasma creatinine concentration, and k is a constant that depends on muscle mass. The value for k in 118 appropriate for gestational age preterm infants (0.34 +/- 0.01 SE) was significantly less than that of full-term infants (0.43 +/- 0.02, P less than 0.001). There was no difference between 12- to 24-hour single-injection inulin clearance and either 0.33 L/Pcr or creatinine clearance in preterm infants. We compared the body habitus of preterm and full-term infants using the assessment of muscle mass from urinary creatinine excretion (UcrV) and from upper arm muscle area (AMA) and volume (AMV), and that of fatness from the sum of five skinfold thickness measurements. During the first year of life, premature infants were found to have a lower percentage of muscle mass than term infants did. On the other hand, they took on a relatively greater amount of subcutaneous fat. There was a very good correlation between AMA or AMV and urinary creatinine excretion (r = 0.91 and 0.94, respectively) in 68 infants with heterogeneous body composition during the first year, indicating the validity of the urinary creatinine measurement. Absolute GFR (ml/min) was also well estimated from AMA or AMV factored by Pcr. We conclude that GFR can be well estimated from 0.33 L/Pcr in preterm infants. The lower value for k reflects the smaller percentage of muscle mass in preterm versus term infants. As a screening test, 1.5 X k or 0.05 L/Pcr predicted low values of GFR with an efficiency of 73%, specificity of 67%, and sensitivity of 88%.

Rethinking the Definition of "Term Pregnancy"

Term birth (37–41 weeks of gestation) has previously been considered a homogeneous group to which risks associated with preterm (less than 37 weeks of gestation) and postterm births (42 weeks of gestation and beyond) are compared. An examination of the history behind the definition of term birth reveals that it was determined somewhat arbitrarily. There is a growing body of evidence suggesting that significant differences exist in the outcomes of infants delivered within this 5-week interval. We focus attention on a subcategory of term births called “early term,” from 37 0/7 to 38 6/7 weeks of gestation, because there are increasing data that these births have increased mortality and neonatal morbidity as compared with neonates born later at term. The designation “term” carries with it significant clinical implications with respect to the management of pregnancy complications as well as the timing of both elective and indicated delivery. Management of pregnancies should clearly be guided by data derived from gestational age-specific studies. We suggest adoption of this new subcategory of term births (early term births), and call on epidemiologists, clinicians, and researchers to collect data specific to the varying intervals of term birth to provide new insights and strategies for improving birth outcomes.

Development of a Palliative Education Assessment Tool for Medical Student Education

Studies assessing palliative care education in U.S. medical schools reveal that little attention is paid to this topic. Although core competencies have been defined, few schools have implemented effective means to incorporate formal palliative care education into undergraduate curricula. To promote reform, each school needs to conduct a thorough assessment to identify palliative care content throughout the four-year curriculum. The authors developed an innovative assessment instrument to facilitate curricular mapping of palliative care education. The Palliative Education Assessment Tool (PEAT) comprises seven palliative care domains: palliative medicine, pain, neuropsychologic symptoms, other symptoms, ethics and the law, patient/family/nonclinical caregiver perspectives on end-of-life care, and clinical communication skills. Each domain details specific curricular objectives of knowledge, skills, and attitudes. Designed as a flexible self-assessment tool, PEAT helps determine the existence of palliative care education, which usually is found in various formats throughout a medical schools curriculum and thus sometimes “hidden.” PEAT enables educators to describe a specific, multidimensional aspect of the curriculum and use the information for strategic planning, educational reform, and evaluation. The curricular reform implications of such an instrument are broader than palliative care assessment. A modified version of PEAT can be used to assess systematically other topics that are taught in various formats in the curriculum and to develop collaborative approaches to fulfilling the educational objectives of those topics.

Adverse Reactions Associated With Studying Persons Recently Exposed to Mass Urban Disaster

This study assesses the psychological consequences of participation in a mental health study among people recently exposed to the September 11 attacks. Using cross-sectional telephone surveys, we interviewed random samples of English-speaking or Spanish-speaking adults living in New York City during the attacks 1 year after this event. Altogether, 2,368 people completed the surveys, including a random sample of 1,173 respondents who received mental health services after the attacks. Results indicated that 15% of New Yorkers found some of the survey questions stressful, whereas 28% of those who sought treatment found this to be the case. However, less than 2% reported being upset at survey completion, and among these persons, only four people consented to speak to the studys mental health consultant. Although the majority of those expressing adverse reactions had sought postdisaster treatment, even among these subjects, only 3% were still upset at survey completion, and 2% wanted more information about counseling services. In addition, more than 70% of participants expressed positive sentiments about survey participation. Predictive models indicated that respondents who met study criteria for posttraumatic stress disorder, depression, or anxiety were more likely to find questions stressful, with people having posttraumatic stress disorder or depression the most likely to be upset and to consent to psychiatric consultation at completion. We suggest that, with the proper safeguards, research with persons exposed to a resent mass urban disaster generally can be conducted safely and effectively.

Evaluation and medical treatment of the HIV-exposed infant

As a result of the expanding human immunodeficiency virus (HIV) infection epidemic and recently published recommendations for routine HIV testing with consent for all pregnant women in the United States, pediatricians are becoming increasingly involved in providing care to infants born to HIV-infected women. This article provides guidelines about counseling the parent or care giver of the infant, use of antiretroviral therapy to reduce the risk of infection in the infant, medical treatment of the HIV-exposed infant, laboratory testing to determine the infection status of the infant, laboratory monitoring of hematologic and immunologic parameters, prophylaxis for Pneumocystis carinii pneumonia, and recommendations for immunizations and tuberculosis screening.

A neonatal preventive intervention study: Issues of recruitment and retention.

Intervention to prevent negative mental health outcomes in families of ill and premature newborns is an important part of neonatal care. This study addresses the factors which influence participation in a parent support group for parents of ill and premature newborns. Demographic, social support, and infant health data were examined to determine how support group participants and nonparticipants differed. In addition, efforts at enhancing recruitment and retention into support groups were examined. Results showed participants in the support group to have less healthy infants with longer hospital stays than nonparticipants. Participants reported more favorable financial situations, slightly higher incomes and less social support as measured by fewer contacts with family and friends than nonparticipants. Recommendations for future intervention research are discussed.

Gentamicin interval in newborn infants as determined by renal function and postconceptional age

We evaluated the relationship between gentamicin pharmacokinetics and glomerular filtration rate in newborn infants to estimate the appropriate interval of administration in neonates with renal insufficiency. Gentamicin half-life (Gt 1/2) could be predicted from plasma creatinine concentration (Pcr) (r=0.78); the prediction was minimally but significantly increased (r=0.81) by adding postconceptional age to a multiple regression analysis. Infants with a postconceptional age of 29 weeks or more and a Pcr of 1 mg/dl or more had significantly greater trough and peak gentamicin levels than those with a Pcr less than 1 mg/dl. If gentamicin is indicated in a patient with renal insufficiency, the interval of administration should be 2–3 Gt 1/2, which can be estimated from Pcr (Gt 1/2=2.0+7.7 Pcr). The interval can then be adjusted according to peak and trough gentamicin levels.