The ethical and moral dimensions of health and medicine pervade all aspects of clinical care. Providers of hospital care for children constantly encounter situations in which ethical considerations are vital, ranging from the routine task of obtaining parental permission for medical care to more rare quandaries regarding care deemed necessary (yet is refused) or futile (yet is requested). Competence in handling ethically problematic situations can be enhanced by expanding one’s perspective on ethical thinking, knowing what institutional resources are available to help resolve ethical problems, and learning how to approach specific common problems.

RULES AND POLICIES

There are many ways to approach ethical decision-making. An important practical starting point is the hospital’s rule or policy providing specific instructions regarding the issue at hand. For instance, hospitals typically provide guidance about when the general consent for care granted by a parent at the time of admission is inadequate and specific parental permission to perform certain diagnostic or therapeutic procedures must be obtained and documented. Such rules and policies can often be found in the medical staff bylaws or in national guidelines published by the American Academy of Pediatrics (AAP), American Medical Association, or other organizations. Ethically problematic situations are addressed by asking, “What rules and policies [or pertinent state or federal laws] govern our conduct and guide our choices?”

DUTIES, RESPONSIBILITIES, AND COMMITMENTS

Consideration of professionally defined duties and responsibilities can help guide decisions. A growing movement within medicine emphasizes the importance of professional duties, responsibilities, and commitments toward such ends as professional competence, just distribution of finite resources, the integrity and advancement of scientific knowledge, honesty with patients, patient confidentiality, maintenance of appropriate relations and boundaries with patients, improvements in quality of care and access to it, and maintenance of trust by managing conflicts of interest.¹ To the degree that such commitments reflect professional consensus, they function as informal policies and guide our actions by telling us (less explicitly than policies) how to behave.

VIRTUES OR PERSONAL TRAITS

An allied approach to ethics focuses on individual character traits such as honesty, compassion, competence, fortitude, temperance, fidelity, integrity, self-effacement, and wise and prudent decision-making. Here, however, the emphasis shifts away from what constitutes good behavior (which is the focus of policies or duties) and toward what constitutes a good person who will behave virtuously.² When confronting ethically problematic situations, personal traits can be used to evaluate a proposed course of action: if I behave in this manner, will I be acting with honesty, fidelity, and fortitude? If not, why would I pursue this course of action? Can I chart another course with greater integrity and wisdom?

BIOETHICS PRINCIPLES

To analyze what would be the “right” course of action, it may also be useful to consider the frequently cited core principles of bioethics as presented by Beauchamp and Childress (beneficence, non-maleficence, autonomy, and justice).³ These principles are described so that many different moral theories would endorse them. They offer a framework for how to approach an ethical dilemma that speaks across different backgrounds because they are valued by many different moral traditions. Beneficence seeks to maximize the benefits caused by our actions, whereas nonmaleficence seeks to minimize the harm that our actions cause. Many therapeutic decisions involve some tradeoff between beneficence and nonmaleficence; simply making a list of the good and bad things that might happen, and how likely they are to happen, can help clarify some dilemmas. Autonomy seeks to enable an individual’s values to guide his or her medical care; respecting a patient’s autonomy is a central way we respect their dignity. Considerations of justice involve how the care of one person fits into the larger system of the care of all persons and can bring up issues of resource allocation and fair procedures to determine who gets what type of care. Understanding how these core principles may be in conflict with one another in specific situations can help elucidate why different individuals may view ethical dilemmas in different ways and may serve as a starting point for discussion and resolution of conflict.

MEDIATION OF HUMAN SOCIAL INTERACTIONS

A final set of concepts focuses less on ethical theory and more on people’s understanding of a situation and their interactive behavior. Poor communication and misunderstandings lie at the heart of many conflicts that are perceived as ethical dilemmas. Patterns of interacting—ranging from hurried attempts to communicate complex information or bad news to vocal or body language expressions of anger or arrogance—can worsen misunderstanding and intensify noncooperation.⁴ If misunderstanding and mistrust are allowed to persist, the lines of the dispute can ossify into entrenched positions (e.g. “I will not permit such-and-such to be done under any circumstances”). Making progress in such cases takes time, patience, and a willingness to share control over the decision-making process. A mediation or negotiation model emphasizes, first and foremost, building mutual understanding and trust; only after these prerequisites have been created can one move on to problem solving.⁵

When confronting ethically problematic situations, most pediatric physicians can draw on valuable resources within their hospitals.

KEY PEOPLE

To improve communication, build shared understanding, clarify goals, generate novel solutions, or mediate disputes, physicians may turn to professional translators or cultural mediators, social workers, nurses, pastoral care workers such as chaplains or rabbis, palliative care team members, legal counsel, or other physicians with particular skills in these areas.

ETHICS COMMITTEES

Institutional ethics committees can develop or review hospital policies, perform clinical ethics consultations, mediate disputes or controversies, and educate healthcare professionals and patients.^6,7 Seven principles guide the process of ethics consultation (Table 12-1).⁶ Overall, the quality of an ethics consultation rests on the committee’s preparation, including interviewing key stakeholders, gathering pertinent data, and reviewing pertinent literature,⁸ and its ability to provide an open forum for honest and confidential discussion.

RESEARCH AND INSTITUTIONAL REVIEW BOARDS

Children are allowed to participate in research only when the institutional review board determines that the risks are minimal, a minor increase over minimal risk, or that the pediatric subjects may benefit directly from participation in the research study.⁹ As always, fully informed permission or consent is a prerequisite for research conducted on human subjects (yet only a third of published pediatric studies include proper documentation of institutional review board approval and informed permission or consent).¹⁰