Medical Ethics in Neonatal Care

Principles in Medical Ethics

Ethical reasoning requires an understanding of the fundamental principles that define a domain ( Box 3.1 ). Beauchamp and Childress have described four core bioethical principles: autonomy, beneficence, nonmaleficence, and justice. Consideration of a real time ethical conflict or dilemma in the context of these principles can be a useful starting point and can be particularly helpful in articulating the ethical questions, uniting a struggling team by use of commonly held, noninflammatory language. However, a principles-based approach is of limited value when the problem revolves around a conflict between the principles themselves, as is often the case in the NICU. In many cases, a “principalis” paradigm may not do justice to the nature or complexity of the moral problem. In addition, in a purely principle-based approach, the role of the neonatal health care provider as moral agent (i.e., someone with personal virtues and values and the opportunity to take action that comports with that judgment of morality) is de-emphasized. This chapter does not prescribe adherence to any particular ethical theory but aims to enhance appreciation of the language of ethical discourse to enable nuanced reflection, reasoning, and ethical decision making, and to underline the role of the health care provider in these situations.

Autonomy

The principle of autonomy supports the right of competent patients to make their own health care choices. An individual who makes an autonomous choice acts intentionally, with understanding and without external controlling influences. An idealized expression of autonomy occurs when a competent adult chooses voluntarily and intelligently from among various options whose relative risks and benefits have been fully explained to him or her by the physicians (i.e., via a truly informed consent process).

The term parental autonomy is often used interchangeably with parental authority , although most argue that autonomy can strictly be used only when making decisions for oneself. Parental authority is the more correct term when referring to the role of parents in decision making for their newborn infants.

Neonatal health care professionals should show respect for parental authority/autonomy: (1) because of the presumption that parents will make decisions that are in their child's best interests (parents are often described as the “natural surrogate decision makers” for children) and (2) as a means of promoting shared decision making with physicians. Parents are not uniform in their desire to direct or even participate in medical decision making for their children. However, physicians must be conscious of the impact of their authority, the power that derives from expertise and confidence, as well as limitations in their own ability to determine how directive parents wish for them to be in preference-sensitive decisions.

In the second half of the 20th century, there was a shift away from a paternalistic approach to information sharing and medical decision making toward empowerment of the patient to make autonomous choices. This condemnation of paternalism has more recently been viewed as excessively burdening some patients with weighty decisions that they do not wish to make alone. There is a body of evidence that the prevailing bioethics emphasis on autonomy and self-determination can be overwhelming to parents, and numerous studies show that respect for parental authority does not require physician adherence to a strict informed consent interaction. A more nuanced application of this respect can be satisfactorily achieved by including parents in decision making within a trusting parent–physician relationship. Parental insistence on their right and role as final decision maker should be addressed carefully and viewed as a warning signal that there has been a degradation of the quality of communication with the medical team, or a sense that their authority as parents has been denigrated.

Too rigid or simplistic an interpretation and application of respect for parental autonomy by physicians is also problematic, such as when agreeing to a parental statement that “we want everything done.” Without exploring what underlies this declaration, physicians may neglect the complexity of the situation and the underlying parental fear of “abandonment.” Finding the right balance between respect for parental autonomy and the physician's role and responsibility in any decision-making process requires insight, empathy, and great analytical and communication skills.

Beneficence

Beneficence is the obligation to “do good,” that is, to promote the best interests of their patients. In newborns, this obligation is embodied in the concept of the “best interests of the newborn.” This is a moral and legal standard of judgment that helps to establish the primacy of duties to infants, ensuring they be regarded as fully human individuals with interests, even when clearly unable to express their own value system. Pursuing a course of action in the best interests of an infant implies determining what treatment course has a more favorable benefit-to-harm ratio than other possible options. Interpretation of the meaning of “benefit” can vary between infants and between stakeholders (parents, relatives, health care providers) for the same infant. Interpretations of what it means for a treatment to be beneficial include improvement in the infant's condition, stabilization of the infant's condition, or delaying the onset of clinical deterioration. Amelioration of clinical symptoms, or avoidance of complications of treatment, might also be construed as benefit. Benefit can also be achieved by identifying a less restrictive or intrusive treatment.

Determination of best interests requires an assessment of the child's potential quality of life . Quality-of-life considerations encompass the predicted cognitive and neurodevelopmental outcome, the potential for motor disability or other physical handicap (e.g., vision, hearing), and longer-term concerns such as behavioral and learning difficulties or school problems. It also considers the requirements for repeated or prolonged hospitalization, surgery, or medication; technology dependence; and the potential for pain and suffering to be endured. Quality-of-life considerations may also include less concrete medical states, such as the capacity for meaningful and potentially enjoyable interaction with other people and the environment. Some of the most ferocious disagreements between and within NICU teams relate to the inherently subjective nature of quality of life. Contemporary clinical ethicists have moved away from seemingly quantifiable assessments of quality of life, related to measurable outcomes, toward a more subjective interpretation, informed largely by the parents’ expressed values. Physicians and other care providers in the NICU must exercise caution not to misidentify expressions of hope, such as descriptions of future milestones and achievements, as manifestations of maladaptive denial of likely outcomes, particularly given that parents have been shown to identify with providers who express hope and compassion in their communication. Although well-intentioned providers might seek to “correct” parents’ interpretation of the quality of an anticipated outcome, recognition that some families might see more value in survival with neurodevelopmental disability or technology dependence than others is crucial to family-centered care and shared decision making.

The standard of best interests of the newborn acts as a threshold for judgment, yet the subjective nature of this assessment and the fact that the assessment is being done by surrogate decision makers must always be recognized. Additionally, it is imperative for clinicians to be aware of their limited powers of prognostication. Repeated studies by Meadow and colleagues have shown that when health care professionals predict that an infant will not survive to discharge, they are incorrect relatively frequently. However, there are circumstances in which the best interest standard can be very helpful to medical teams, such as when urgent decisions must be made in the absence of parental input or when parents refuse clearly life-saving interventions. For the latter, best interest serves as a standard for overriding parental decisions.

Diekema has suggested that the more conservative “harm” principle be applied in overriding parental wishes. By this principle, rather than determine the “best interests,” a harm threshold will be determined below which the parents’ decision will be overruled. Although invocation of the harm principle can be quite helpful, stakeholders for sick neonates must be careful to apply it in the context of illness severity, urgency, and maintenance of professional standards and integrity.

Despite these definitional difficulties and suggested alternative standards such as the “harm” principle, “best interests of the newborn” is accepted as a guiding principle for decision makers because it unites different meanings under one standard and exhibits reasonableness, given the prevailing conditions. Properly understood, the concept can serve as a powerful tool in settling disputes about how to make good decisions for individuals who cannot decide for themselves.

Nonmaleficence

The principle of nonmaleficence implies an obligation not to inflict harm on others. It has been closely associated with the maxim primum non nocere (first do no harm). Although beneficence incorporates preventing and removing harm as part of promoting “the good” of a patient, the injunction not to inflict harm remains a distinct principle and requires intentionally refraining from actions that cause harm. Such harm is generally interpreted as physical harm , especially pain, disability, or death. Nonmaleficence requires that no initiation or continuation of treatment be considered without consideration of whether the treatment is overly burdensome or harmful. This is especially relevant given a historical context in which attention to pain in neonates has been sorely disregarded, to the degree in which surgeries were performed without anesthesia. However, as for benefit, defining events and interventions that are harmful to the event can be subjective. For some, harm is narrowly defined as pain or anxiety related to the condition or its treatment; assessment of this kind of harm can be aided by the use of bedside pain scores and other objective measures. For others, any intervention that does not change the ultimate outcome for the infant imparts undue burden. Providers and parents may differ about whether hospitalization in an intensive care unit, without the promise of recovery or discharge home, is harmful to the infant.

Justice

Justice is the dominant principle relating to social cooperation . Justice is the framework by which we determine how social benefits, such as health care, and burdens, such as research risks, are distributed. Although justice is regarded as a guiding principle for any health care system, no single, simple, ideal implementation adequately addresses the priorities of all relevant stakeholders. Generally, concepts of justice range from the broader utilitarian calculus to promote the greatest good for the greatest number in underwriting the distribution of resources ( macroallocation ) to a more narrowly focused equality of opportunity for each individual ( microallocation ). Justice in the distribution of resources requires that (1) patients in similar situations have access to the same health care, and (2) the level of health care available for one set of patients takes into account the effect of such a use of resources on other patients. Contemporary interpretations of resource allocation have focused on disparities, both on equality in access to care, upstream from provision of the medical intervention itself, and emphasized the principle of equity over equality . This distinction is important in emphasizing the equality of health outcome rather than equality in provision of any specific resource.

Reasoning in the context of allocation of resources for the individual patient allows that fairness is an important consideration but is not the fundamental standard in this interaction. Microallocation issues are very rarely appropriate at the bedside; individual providers caring for individual patients are poorly suited to make decisions about whether one patient, or another, is more deserving of a limited resource, or to make ad hoc institutional-level decisions about how limited resources will be distributed. First, there is an inherent conflict of interest, in which the provider might rightly prioritize the immediate needs of the patient she is caring for over larger, systems-level considerations. Second, rationing and allocation schemes depend on economic and public health expertise beyond that possessed by most providers. However, individual providers do have a moral obligation to judiciously use medical resources for individual patients and ought not use unnecessarily expensive treatments or treatments that will not effectively promote the patient's health. The conventional ethical prohibition of bedside rationing is also complicated by daily realities of medical care in which time, ICU beds, and limited-quantity equipment are tacitly managed as a matter of routine.

In every system, the provision of neonatal services requires guidelines to be developed for determining appropriate use of these costly and often limited resources. Priorities must be set and justified by organizational leaders. Any changes in the way neonatal care is delivered also need to be fair and accessible, as well as open and challengeable. Disputes should be addressed based on the acceptance of objective measures and trust in the integrity and fairness of the process and the individuals responsible for management of the process. With greater attention being paid to escalating health care costs, there is little question that how resources for sick newborns are used and justified may become more critically and ethically questioned. However, neonatal intensive care has been shown via a number of approaches to be remarkably cost effective, particularly relative to the care of other patient populations.

Key Terms and Concepts