Caring for gravely ill children.

BACKGROUND: Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill. METHODS: Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making for, children who are gravely ill. RESULTS: The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests. CONCLUSIONS: Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.

Perinatal law and ethics rounds.

Advances in perinatal medicine have increased the complexity of the clinical decision-making process. Medical education curricula have paid little attention to exploring the ethical and legal aspects of these decisions. In response to this perceived need, we initiated a case-oriented teaching program in perinatal law and ethics. The goals of the program included the following: to develop skills in "moral diagnosis" and analysis (the ability to interpret and analyze clinical cases from a moral point of view); to understand the relevant laws; to appreciate the ethical and legal relationships between the pregnant woman, her fetus, and the professionals; and to encourage open and frank discussion of these important issues. The teaching rounds, led by a lawyer and ethicist, were held monthly, and included all professionals who care for pregnant women and their newborns. A patient was presented in lay language, stressing the ethical or legal issue raised by the case. Cases could be separated into five categories: questions concerning abortion, issues of maternal-fetal conflict, labor management in extreme prematurity or fetal abnormality, innovative therapy, and the psychological concerns of difficult decisions. Careful case analysis with an in-depth discussion of the ethical principles and legal precedents on which decisions are based appears to be an effective and useful educational exercise. This approach to perinatal teaching can prepare professionals to deal with exigent situations that may occur in practice.

The physician's moral obligations to the pregnant woman, the fetus, and the child.

The moral obligations and ethical duties of health care professionals responsible for the care of a pregnant woman, a fetus, and a child are complex and evolve with gestation and birth. Well-intentioned physicians and others concerned with the interests of pregnant women and their fetuses may disagree about the moral status of the fetus and ethical duties owed to both the woman and fetus. This article lays out a framework for thinking about these issues from several perspectives.

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 school's 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.

Factors affecting humidity of inspired gas in a neonatal lung model.

OBJECTIVE: The American National Standards Institute recommends an absolute humidity of > or = 30 mg/L of inspired gas in patients receiving mechanical ventilation. This study was designed to assess the absolute humidity of inspired gas in relation to humidifier settings and environmental conditions in a test lung. STUDY DESIGN: Measurements were obtained at the endotracheal tube manifold of an artificial lung in an isolette or radiant warmer with use of a nonheated wired system and two different ventilator circuit lengths. Temperature and relative humidity were measured at three environmental temperatures and various humidifier settings. RESULTS: We achieved adequate absolute humidity levels only at near maximum humidifier settings. When the artificial lung was placed in an isolette with a standard circuit length inside the isolette, adequate absolute humidity was never reached at an environmental temperature of 30 degrees C. Increasing the length of the ventilator circuit situated inside the isolette or using a radiant warmer improved absolute humidity compared with that obtained with use of a standard circuit length. CONCLUSION: Recommended absolute humidity levels may not be reached at the manifold even at high humidifier settings. Thus actual measurements of relative humidity and temperature at the endotracheal tube site are necessary to optimize humidity according to American National Standards Institute recommendations.

Branched-chain amino acids and respiratory pattern and function in the neonate.

Branched-chain amino acids (BCAA) increase respiratory drive in adults and improve diaphragmatic function in vitro. This study was designed to examine the effects of increased amounts of BCAA in intravenous nutrition on respiratory function and episodes of apnea in premature infants. An open cross-over design was used, with each patient serving as his own control. Ten premature infants, 34 weeks' gestation or less, were observed. Mean gestational age was 30.6 weeks (range 27 to 33 weeks), mean birth weight was 1487 gm +/- 300 gm, and the age at study was 5 to 33 days. For three consecutive 24-hour periods, the infants received routine total parenteral nutrition (TPN) (30% BCAA), enriched TPN (53% BCAA), and routine TPN (30% BCAA). Pulmonary function, apnea frequency, blood chemistry, and amino acid pattern were measured. Enriched TPN resulted in significant increases in all infants in dynamic compliance, from 2.41 +/- 1.07 to 4.55 +/- 2.78 ml/cm H2O (p < 0.025), and in specific dynamic compliance from 1.67 +/- 0.64 to 3.1 +/- 1.51 ml/cm H2O/kg (p < 0.005). Total pulmonary resistance decreased from 40.3 +/- 23.3 to 24.0 +/- 20.9 cm H2O/L/sec (p < 0.05), and peak-to-peak pressure decreased from 5.96 +/- 0.93 to 4.09 +/- 2.34 cm H2O (p < 0.05). All values returned to baseline with resumption of the routine TPN. In four infants with significant apnea, the average number of episodes of apnea decreased from 58 during standard TPN to 11 with the enriched solution infusion during matched 12-hour periods (p < 0.01).(ABSTRACT TRUNCATED AT 250 WORDS)

Bioethical review committees in perinatology.

Infant bioethical review committees have been proposed as an option to review decisions for critically ill neonates to ensure the best interests of infants. This approach has evolved out of a concern that there have been some wrong decisions made by physicians and parents in which infants have died after treatments were inappropriately withheld or withdrawn. Infant bioethics committees consisting of multidisciplinary professional and lay members will attempt to assure the best interests of infants while maintaining parental discretion concerning decision making in most cases. It is our belief that these committees not only protect the interests of infants who might have treatment inappropriately withheld but also protect the interests of infants who can no longer be benefited by medical intervention. Furthermore, by increasing discussion and deliberation of these complex moral issues, the professional staff will be better able to deal with exigent situations and to provide thoughtful decision making in difficult cases. Finally, the role of the ethics committee will be to provide ethical comfort for staff and family alike in carrying out these difficult decisions for some of the most critically ill patients in our hospitals.

Rickets of prematurity: controversies in causation and prevention.

Metabolic bone disease in the growing premature infant is an important disorder owing to inadequate intake of calcium or phosphorus over an extended period of time. Prevention of serious bone disease is an important goal in the care of the VLBW infant. Attempts to reproduce intrauterine bone accretion rates in intrauterine life may be unnecessary and may result in potential complications.

Teaching medical ethics in perinatology.

The past 15 years has seen the resurgence of an interest in biomedical ethics and an awareness of the importance of teaching this discipline in medical curricula at varying levels. Physicians and philosophers can work together to achieve an integration of clinical case material and philosophical theory, in order to teach bioethics optimally. This article describes a clinical program of ethics rounds for residents and fellows training in neonatal and perinatal medicine.

An infant bioethical review committee in an urban medical center.

KIE: Expanding on a program of neonatal ethics rounds, four hospitals in New York City developed committees in an infant bioethical review program. A core group of experts from each hospital serve on the interlocking committee, while each hospital maintains its own ethics committee with additional members. Two types of cases require mandatory review: those in which it is proposed to withdraw or withhold life-sustaining treatment from a patient who is not imminently dying, and those in which there is disagreement between health care providers and the family concerning treatment. In its first 26 months, the joint committee was consulted in 24 cases. In one case in which parents and physicians agreed to withhold treatment, they changed their minds subsequent to committee involvement. In a second case, Child Protective Services were asked to override parental refusal of treatment. A third case involved a child whose parents insisted on treatment thought to be inappropriate.^ieng

Parental responsibility and the Infant Bioethics Committee.

KIE: The prognosis is not good for an infant whose entire intestine has been destroyed by necrotizing enterocolitis. An infant bioethics committee is asked to advise whether the parents should be offered the option of total parenteral intravenous nutrition, with its ultimately fatal complications, for their child. Committee members agree that the option of intravenous feeding should be offered, and that it is morally acceptable for the parents to refuse it. Fleischman reviews the issues that an infant bioethics committee must consider when it is asked to help decide what treatment options will be discussed with the family of a seriously ill neonate.^ieng

Ethics committees for infants doe?

KIE: Hospital ethics committees are advocated as the best available alternative to review nontreatment decisions for seriously ill newborns. Other options entail such problems as an inability of physicians and parents to be dispassionate decision makers, the intrusive and inefficient nature of government response, and the disruption of hospital unit operation. Ethics committee functions could include policy development and prospective and retrospective review of treatment decisions. "Infant Doe" cases could be handled in three stages: confirmation of diagnosis, mediation between parents and physicians, and reaching an ethical judgment on the morality of a decision. Committees should consider "grey area" cases in accord with a "best-interest-of-the-infant" standard. An insert to the article provides the text of a proposal for ethics committees prepared by the American Academy of Pediatrics.^ieng