Sally A. Webb

Ethical and policy issues in genetic testing and screening of children

The genetic testing and genetic screening of children are commonplace. Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child. The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best practices. This policy statement represents recommendations developed collaboratively by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics with respect to many of the scenarios in which genetic testing and screening can occur.

Informed Consent in Decision-Making in Pediatric Practice.

Informed consent should be seen as an essential part of health care practice; parental permission and childhood assent is an active process that engages patients, both adults and children, in their health care. Pediatric practice is unique in that developmental maturation allows, over time, for increasing inclusion of the child’s and adolescent’s opinion in medical decision-making in clinical practice and research. This technical report, which accompanies the policy statement “Informed Consent in Decision-Making in Pediatric Practice” was written to provide a broader background on the nature of informed consent, surrogate decision-making in pediatric practice, information on child and adolescent decision-making, and special issues in adolescent informed consent, assent, and refusal. It is anticipated that this information will help provide support for the recommendations included in the policy statement.

Clinical report - Maternal-fetal intervention and fetal care centers

The past 2 decades have yielded profound advances in the fields of prenatal diagnosis and fetal intervention. Although fetal interventions are driven by a beneficence-based motivation to improve fetal and neonatal outcomes, advancement in fetal therapies raises ethical issues surrounding maternal autonomy and decision-making, concepts of innovation versus research, and organizational aspects within institutions in the development of fetal care centers. To safeguard the interests of both the pregnant woman and the fetus, the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics make recommendations regarding informed consent, the role of research subject advocates and other independent advocates, the availability of support services, the multidisciplinary nature of fetal intervention teams, the oversight of centers, and the need to accumulate maternal and fetal outcome data.

Policy statement - Consent for emergency medical services for children and adolescents

Parental consent generally is required for the medical evaluation and treatment of minor children. However, children and adolescents might require evaluation of and treatment for emergency medical conditions in situations in which a parent or legal guardian is not available to provide consent or conditions under which an adolescent patient might possess the legal authority to provide consent. In general, a medical screening examination and any medical care necessary and likely to prevent imminent and significant harm to the pediatric patient with an emergency medical condition should not be withheld or delayed because of problems obtaining consent. The purpose of this policy statement is to provide guidance in those situations in which parental consent is not readily available, in which parental consent is not necessary, or in which parental refusal of consent places a child at risk of significant harm.

Pediatric ECMO for severe quinidine cardiotoxicity.

We report the use of extracorporeal membrane oxygenation (ECMO) to establish and maintain cardiovascular stability in a 16 month old with refractory bradydysrrhythmias and hypotension after an acute overdose of quinidine. He underwent an 11-day course of ECMO and was discharged with normal neurologic function. This case illustrates the role ECMO can play in the treatment of profound cardiovascular collapse caused by toxic ingestions. To be optimally effective, management of such patients must be anticipatory.

Policy statement - Physician refusal to provide information or treatment on the basis of claims of conscience

Health care professionals may have moral objections to particular medical interventions. They may refuse to provide or cooperate in the provision of these interventions. Such objections are referred to as conscientious objections. Although it may be difficult to characterize or validate claims of conscience, respecting the individual physicians moral integrity is important. Conflicts arise when claims of conscience impede a patients access to medical information or care. A physicians conscientious objection to certain interventions or treatments may be constrained in some situations. Physicians have a duty to disclose to prospective patients treatments they refuse to perform. As part of informed consent, physicians also have a duty to inform their patients of all relevant and legally available treatment options, including options to which they object. They have a moral obligation to refer patients to other health care professionals who are willing to provide those services when failing to do so would cause harm to the patient, and they have a duty to treat patients in emergencies when referral would significantly increase the probability of mortality or serious morbidity. Conversely, the health care system should make reasonable accommodations for physicians with conscientious objections.

Ethical controversies in organ donation after circulatory death

The persistent mismatch between the supply of and need for transplantable organs has led to efforts to increase the supply, including controlled donation after circulatory death (DCD). Controlled DCD involves organ recovery after the planned withdrawal of life-sustaining treatment and the declaration of death according to the cardiorespiratory criteria. Two central ethical issues in DCD are when organ recovery can begin and how to manage conflicts of interests. The “dead donor rule” should be maintained, and donors in cases of DCD should only be declared dead after the permanent cessation of circulatory function. Permanence is generally established by a 2- to 5-minute waiting period. Given ongoing controversy over whether the cessation must also be irreversible, physicians should not be required to participate in DCD. Because the preparation for organ recovery in DCD begins before the declaration of death, there are potential conflicts between the donor’s and recipient’s interests. These conflicts can be managed in a variety of ways, including informed consent and separating the various participants’ roles. For example, informed consent should be sought for premortem interventions to improve organ viability, and organ procurement organization personnel and members of the transplant team should not be involved in the discontinuation of life-sustaining treatment or the declaration of death. It is also important to emphasize that potential donors in cases of DCD should receive integrated interdisciplinary palliative care, including sedation and analgesia.

Prediction of childhood drowning and near-drowning morbidity and mortality

Objectives (a) Evaluate the presenting hemodynamic status and neurologic function of a series of warm water submersion injuries. (b) To ascertain the importance of the timing of the neurologic examination. (c) To identify risk factors that predict which patients will not return to presubmersion status. Design Retrospective review of all patients with a diagnosis of drowning/near-drowning responded to by the Childrens Hospital pediatric transport service. Data were collected over a 24-month period regarding patient characteristics, submersion medium, rescue efforts, time out of sight, elapsed times to emergency department (ED) and pediatric intensive care unit (PICU) arrival, neurologic and hemodynamic status on arrival at the ED and PICU, reconstructed Conn-Modell category, and neurologic outcome. Setting EDs of the referring hospitals and PICU of the Childrens Hospital of Orange County (CHOC), California. Patients Ninety-three submersion victims at an average age of 31 months. All patients were provided intensive care support. Interventions None. Measurements and main results Twenty-three percent (21/93) of patients died or survived vegetative. No patient arriving comatose and asystolic in the ED survived neurologically intact (n = 21, three patients expired in the ED). This group of patients had a mean duration of documented asystole = 41 minutes, range of 18 to 107 minutes, and time to ED arrival = 21 minutes. All patients with a detectable pulse and blood pressure (n = 72) on arrival to the ED, regardless of their neurologic status, recovered to their presubmersion status. Patients arriving comatose (decorticate, decerebrate, or flaccid posture) in the PICU (n = 18, mean arrival = 192 minutes) all died or were vegetative. All patients with non-coma (n = 72, Conn-Modell category A or B) on arrival to the PICU recovered normally. Conclusions Hemodynamic status in the ED and neurologic status in the PICU are highly predictive of outcome. On arrival to the ED, the cardiovascular status is more predictive of abnormal outcome than neurologic status. Poor neurologic outcome appears inevitable for warm water submersion victims who are asystolic at ED arrival and remain comatose for more than 200 minutes.

Venous thromboembolism prophylaxis in the pediatric trauma population

BACKGROUND/PURPOSE The aim of this study was to review evidence-based literature addressing pertinent questions about venous thromboembolism (VTE) after traumatic injury in children. METHODS Data were obtained from English-language articles identified through Pubmed published from 1995 until November 2012, and from bibliographies of relevant articles. Studies were included if they contributed evidence to one of the following questions. In the pediatric traumatic injury population: (1) What is the overall incidence of VTE? (2) Is age (adolescence versus pre-adolescence) associated with higher VTE incidence? (3) Which risk factors are associated with higher VTE incidence? (4) Does mechanical and/or pharmacological prophylaxis impact outcomes? RESULTS Eighteen articles were included in this systematic review. The evidence regarding each question was evaluated, graded by author consensus, and summarized. CONCLUSIONS The overall incidence of VTE is low. Older (>13years) and more severely injured patients are at higher VTE risk. Additional factors including injury type or presence of a central venous catheter also place a patient at higher VTE risk. Implementation of a risk-based clinical practice guideline for VTE prophylaxis has been associated with reduced symptomatic VTE at one institution. Randomized, prospective trials analyzing outcomes of VTE prophylaxis in pediatric trauma victims are needed.

Policy statement - Pediatrician-family-patient relationships: Managing the boundaries

All professionals are concerned about maintaining the appropriate limits in their relationships with those they serve. Pediatricians should be aware that, under normal circumstances, caring for ones own children presents significant ethical issues. Pediatricians also must strive to maintain appropriate professional boundaries in their relationships with the family members of their patients. Pediatricians should avoid behavior that patients and parents might misunderstand as having sexual or inappropriate social meaning. Romantic and sexual involvement between physicians and patients is unacceptable. The acceptance of gifts or nonmonetary compensation for medical services has the potential to affect the professional relationship adversely.