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Biomedical subjects

Steven R Leuthner

Publications and source records attributed to Steven R Leuthner.

12 recordsLinked to original sources
PubMed2006

Assent for treatment: clinician knowledge, attitudes, and practice.

OBJECTIVES: Our purpose for this work was to explore clinician knowledge, attitudes, and practice regarding assent for medical treatment and to compare current practice with existing American Academy of Pediatrics guidelines. METHODS: One of the investigators administered a questionnaire to clinicians who perform procedures on children at an academic tertiary care pediatric hospital to assess knowledge of assent for medical treatment and familiarity with the American Academy of Pediatrics policy statement on assent and to measure clinician attitudes and approaches to consent/assent in pediatrics. RESULTS: Of 35 clinicians enrolled, 23 (66%) had heard of the term "assent," and 9 (26%) of 35 were aware of the American Academy of Pediatrics policy statement on assent. Twenty five (74%) of 34 thought 1 of the main goals of assent was to educate the child. Only 12 (35%) of 34 included the element of seeking the child's agreement as a goal of assent. In practice, the element of explaining the proposed treatment was "always" included by 26 (74%) of 35. The element of seeking the child's agreement was "always" included by 9 (26%) of 35. CONCLUSIONS: The clinicians in this study had limited explicit knowledge of the concept of assent for medical treatment and were largely unaware of the recommendations from the American Academy of Pediatrics. Their attitudes and practice reflected implicit acceptance of the importance of including children in discussions about their medical care and reluctance to give children decision-making authority. A model of medical decision-making for children that includes education but does not allow children to share decision-making authority may be more applicable to clinical practice than the current American Academy of Pediatrics-supported model of assent.

Adolescent↗
PubMed2006

The National Children's Study and the children of Wisconsin.

Prospective, multi-year epidemiologic studies such as the Framingham Heart Study and the Nurses' Health Study have proven highly effective in identifying risk factors for chronic illness and in guiding disease prevention. Now, in order to identify environmental risk factors for chronic disease in children, the US Congress authorized a National Children's Study as part of the Children's Health Act of 2000. Enrollment of a nationally representative cohort of 100,000 children will begin in 2008, with follow-up to continue through age 21. Environmental assessment and examination of biomarkers collected at specified intervals during pregnancy and childhood will be a major component of the Study. Recruitment at 105 sites across the United States is planned, and will begin at 7 Vanguard Centers in 2008, including Waukesha County, Wis. The National Children's Study will provide information on preventable risk factors for such chronic diseases as asthma, certain birth defects, neurobehavioral syndromes, and obesity. In addition, the National Children's Study will provide training in pediatric environmental health for the next generation of researchers and practitioners.

Child↗
PubMed2006

The National Children's Study Waukesha County, Wisconsin Vanguard Center.

The National Children's Study (NCS) is a large, longterm study designed to detect environmental influences on the health and development of children. Waukesha County, Wisconsin, was selected as 1 of 7 "Vanguard Centers" currently funded to finalize and lead the implementation of the study protocol. The authors provide an overview of key design and planning processes that will be used at all NCS Vanguard locations, the specific approaches to be used in the NCS Waukesha County Vanguard Center, and information about how Wisconsin physicians and other health care professionals can become involved in working with the NCS.

Child↗
PubMed2004

Fetal palliative care.

Efforts in advance palliative care planning for the fetus at risk of dying are as meaningful and should be as clinically and socially acceptable as the provision of continued life-extending endeavors. The diagnosis of a fetus at risk of dying because of a lethal anomaly or prematurity is a monumental moment in a family's life. It requires not only extensive team counseling about complex neonatal and obstetric medical management but also acknowledgment, counseling, and support of complex mental health, ethical, spiritual issues. To participate in the care of these families during a tremendously personal time is sad but also rewarding personally and professionally.

Family↗
PubMed2004

Preparing the neonate for transport.

Evaluation and stabilization of a neonate while arranging for neonatal transport are often stressful undertakings marked by urgency. Available resources may be limited, which further exacerbates anxiety of parents, staff, and physician. Even with limited resources, however, staff should be trained to evaluate and assess newborn babies and notify a physician quickly of any concerns. A preplanned transport algorithm gives a physician time to stabilize and manage the newborn while arranging for transport. Conditions that require neonatal transport are outlined, with a brief description of the subsequent hospital course, as anticipatory information for the parents.

Congenital Abnormalities↗
PubMed2004

Palliative care of the infant with lethal anomalies.

Although many families of infants with prenatally diagnosed lethal anomalies may receive counseling by clinicians with perinatal, neonatal, or genetic expertise and deliver their babies in a tertiary care center, pediatricians may be called on to support and care for these infants. Their involvement may begin prenatally, at the time of delivery, in the newborn nursery, or upon discharge home from a NICU. The goal of this article is to help the general pediatrician gain some comfort in knowing which cases might be considered and provide some tools and ideas for counseling a family from any point of involvement.

Advance Care Planning↗
PubMed2004

Low Apgar scores and the definition of birth asphyxia.

Nonreassuring fetal heart rate patterns, prolonged labor, meconium-stained fluid, a low 1-minute Apgar score, and mild to moderate acidemia have no predictive value for long-term neurologic injury without signs of encephalopathy and seizures. It is important to provide proper resuscitation, support infants, and allow time for evaluation. We have time and the tools to provide fairly predictive information to the families. It is important to use this knowledge wisely in communicating honestly with families, because difficult decisions undoubtedly will arise.

Apgar Score↗
PubMed2004

Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin.

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening condition are dying, (2) agency services available to dying infants and their families, and (3) utilization of these services for infants within the state of Wisconsin. We collected information from death certificates for infants whose cause of death was either congenital anomaly or condition of the perinatal period, such as hypoxic ischemic encephalopathy or prematurity. In addition, we surveyed all hospice and home health agencies in Wisconsin to determine their ability to serve and whether they were utilized for this same population. During 1992-1996 in Wisconsin, state records indicate that 2591 infants died: congenital anomalies or conditions of the perinatal period resulted in 1538 (60%) of these deaths. Of the 508 infant deaths from congenital anomalies, 46 (9%) occurred at home. Of the 1030 deaths from conditions of the perinatal period, 16 (1.5%) occurred at home. Only 36 (40%) of the 91 hospice/home health agencies that responded to our survey provided services to the pediatric population between 1992-1996. During this time, only 11 agencies provided care for 20 infant home deaths, comprising 32% of infant home deaths reported to the state in that same time period. In comparison to adults and older children, we found a low home death rate for infants with a life-threatening condition. To clarify these findings, we discuss barriers to infant home death.

Cause of Death↗
PubMed2003

Genitopatellar syndrome: expanding the phenotype.

Genitopatellar syndrome is a recently described disorder with characteristic facies, genital anomalies, absent patella, flexion contractures, microcephaly, renal anomalies, and mental retardation. The presence of affected siblings in two of the original families suggests autosomal recessive inheritance. We report a new patient that exhibits all of these cardinal features and is also the second case to have additional, more severe findings including a congenital heart defect, anal anomalies, and features of an ectodermal dysplasia, thus expanding the phenotype to include these manifestations.

Facies↗
PubMed2003

The ethics of withholding/withdrawing nutrition in the newborn.

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures such as parenteral nutrition or tube feedings. However, for some newborn infants the provision of medically assisted nutrition may be a more complicated issue. In particular, the goals of nutrition need to be clearly elaborated for newborns with lethal conditions or for whom appropriately administered intensive care is unsuccessful in sustaining life. These infants may benefit from palliative measures of care and a limitation or withdrawal of burdensome or nonbeneficial interventions. This article explores issues pertinent to deciding and communicating the appropriate withdrawal of medically assisted nutrition and implementing palliative comfort measures.

Emotions↗
PubMed2002

Decision making in the NICU--strategies, statistics, and "satisficing".

As science progresses, new issues in bioethics grab the headlines, but in neonatal medicine communication and decision making for sick and premature infants is as important today as it was thirty years ago. Decisions have to be made and made well, despite suboptimal time, data, or knowledge. To this end, the authors propose good communication and a cooperative model as key to interpreting the best interest standard in a way that respects parental rights and responsibility and allows best interest to be decided from an amalgam of medical facts and human values.

Communication↗