I. BACKGROUND. The practice of neonatology necessitates decision making in all aspects of care. Most neonatologists feel comfortable making routine clinical decisions regarding management of pulmonary or cardiac function, infection, nutrition, and neurodevelopment care. On the other hand, clinical situations with ethical implications are often more difficult for professionals and families. These include decisions regarding instituting, withholding, or withdrawing lifesustaining therapy in patients with irreversible or terminal conditions such as extreme immaturity, severe hypoxic-ischemic encephalopathy, certain congenital anomalies, or other conditions that are refractory to the best available treatments.

A. The ethical principles that must be considered in the decision-making process in the neonatal intensive unit (NICU) care include beneficence, nonmaleficence, respect for autonomy, justice, and other principles and ethical frameworks associated with the physician-patient relationship, such as narrative ethics, feminist ethics, or care ethics.¹,² Other principles that must be considered include the following:

1. Treatment decisions must be based on the infant’s best interests, free from considerations of race, ethnicity, ability to pay, or other influences. The American Academy of Pediatrics (AAP), the judicial system, and
various bioethicists have all embraced some form of this standard, although their interpretations have differed.

2. The infant’s parents generally serve as the legal and moral fiduciaries (or advocates) for their child. The relationship of parents to children is that of responsibility, not rights. Because infants are incapable of making decisions for themselves, the parents become their surrogate decision makers. Therefore, the parents are owed respect for autonomy in making decisions for their infants as long as their decisions do not conflict with the best interests of their child.

3. The physician serves as a fiduciary who acts in the best interest of the patient using the most current evidence-based medical information. In this role as infant advocate, the physician oversees the responses (decisions) of his or her patient’s parents. It is the responsibility of the physician to involve the court system when he or she perceives that the infant’s interests are inappropriately threatened by the parents’ decision.

B. There is considerable debate on how to define the “best interests” of the infant. The most controversial issue is whether the primary focus should be the preservation of life (the vitalist approach) or the maintenance of a particular quality of life (the nonvitalist approach). This debate enters into difficult decisions more frequently as it becomes technically possible to sustain smaller and sicker infants. Staff and parents often struggle with identifying the medical and moral choices and with making decisions based on those choices. These choices, including the understanding of what defines a fulfilling or adequate quality of life, vary substantially among families and professionals.

C. Informed consent versus parental permission. The 1995 AAP Committee on Bioethics policy statement “Informed Consent, Parental Permission, and Assent in Pediatric Practice” embraced the concept of parental permission. Parental permission, such as informed consent, requires that parents be informed of the various treatment options, as well as their risks and benefits, and allows them to make decisions in cooperation with the physician. It differs from informed consent in that it is derived from the obligation shared by the parents and physicians to make decisions in the best interest of the infant, thereby enabling the physician to proceed with a treatment plan without parental permission (or even against parental wishes) if doing so is clearly in the best interests of the infant.

II. DEVELOPING A PROCESS FOR ETHICAL DECISION MAKING. An ethically sound, well-defined, and rigorous process for making decisions in ethically challenging cases is key to avoiding unwanted outcomes or intervention by a state agency or court. A NICU should define the decision-making process and identify the individuals (primary medical team, nursing staff, subspecialists, social services, ethicists, hospital legal counsel) that may need to participate in that process. Developing this process in advance allows for healthy discussions among NICU personnel that incorporate ethical knowledge and values at a time and place separate from a specific patient. Ideally, this preparation will ease the stress when an actual decision needs to be made.

A. Develop an educational program to prepare NICU caregivers to address difficult decisions regarding patient care. Focus on process (who, when, where) as well as on substance (how). Identifying areas of frequent consensus
and disagreement within a NICU and outlining a general approach to those situations can provide helpful guidance. The educational program should be available for NICU staff and discussed during the orientation of new personnel. The hospital ethics committee can serve as an educational resource for personnel regarding how to approach ethical decision making.

B. Identify common ethical situations (e.g., extreme prematurity, multiple congenital anomalies, severe asphyxia) that might produce conflict and have a series of multidisciplinary discussions about these models as part of an educational program. These conversations should include a review of updated evidence and the common underlying ethical principles likely to be in conflict and illuminate common areas of agreement or disagreement. These discussions help develop a consensus on group values, promote a tolerance for individual differences, and establish trust and respect among professionals. The overall goal is to better prepare caregivers when actual situations arise, while recognizing that each situation will be unique.