Sources of Moral Guidance

Everyone draws on multiple sources of moral guidance, including parental and family values, cultural traditions, and religious beliefs. These sources are the roots of moral values, and they create a disposition to do the right thing. However, for many reasons these values and beliefs do not provide sufficient guidance for addressing dilemmas in clinical ethics.⁵⁰

First, personal moral values might not address important issues in clinical ethics. Often nurses are first confronted by difficult ethical issues during education or clinical practice. Personal moral values might also offer conflicting advice on a particular situation; nurses may hold several fundamental beliefs that are in conflict. A nurse may want to alleviate the suffering of a dying infant while also respecting the sanctity of life. When nurses or other healthcare providers encounter a dilemma in clinical ethics, it is not a reflection of character or background.

The nurse’s personal values and beliefs may not be sufficient to guide a dilemma in clinical ethics, because nurses have role-specific ethical obligations that go beyond their obligations as a good person. Finally, to resolve ethical dilemmas in patient care, nurses need to persuade others of their plan or recommendations, and this may require generating a consensus or compromise. Healthcare workers, patients, and family members may have different religious or cultural backgrounds than those of the patient. Clinical ethics analyze the reasons that justify a particular course of action. People can be persuaded by cogent arguments, and people with different world views can reach agreement in specific cases.

Occasionally, individuals may explain their actions as a matter of conscience: to act otherwise would make them feel guilty or ashamed or violate their sense of wholeness or integrity. Conscience involves self-reflection and judgment about whether an action is right or wrong.⁹ Conscience thus arises from a fundamental commitment or intention to be moral. It unites the cognitive, conative, and emotional aspect of the moral life by a commitment to integrity or moral wholeness.⁸⁰ It is a commitment to uphold one’s deepest self-identifying moral beliefs; a commitment to discern the moral features of a particular case as best one can, and to reason morally to the best of one’s ability; a commitment to emotional balance in one’s moral decision-making; and a commitment to make decisions according to one’s moral ability and to act upon what one discerns to be the morally right course of action.⁸⁰

In general, deeply held claims of conscience should be honored; it would strip persons of their moral agency to compel them to act in ways that violate their sense of integrity and responsibility. Claims of conscience, however, might not always resolve a dispute. Other people might cite their own conscience as a countervailing argument. Occasionally, one can believe that an act is morally wrong when it is actually permissible and vice versa.

Individuals often appeal to rights, such as a right to healthcare, to explain positions on ethical issues. To philosophers, rights are justified claims that a person can make on others or on society.⁹ The language of rights is widespread, but an appeal to rights is often controversial. Other people might deny that the right exists or assert conflicting rights. Claims of rights are often used to end debates; however, the crucial issue is whether persuasive arguments support the existence of the right.⁵⁰

Moral principles offer general values to guide us in making practical choices; several have become important focal points for discussions in medical ethics. The principle of beneficence instructs the promotion of people’s well-being and nonmaleficence—to avoid harming people. The principle of distributing justice directs a fair allocation of goods, benefits, and services among those in a group, whereas the principle of social utility guides the promotion of the greatest good for the greatest number of people in a society. The principle of autonomy or self-determination prescribes that a person act to foster personal responsibility and plan his or her life to develop abilities and opportunities to flourish.

It is a mistake to suppose that moral principles simply prescribe what to do or require uniform action and conformity. First, because they are stated abstractly, they must be interpreted or specified³⁵; this is done by making practical moral judgments, leaving considerable room for interpretation and disagreement from person to person or from culture to culture, even among those who agree on the importance of these principles. Second, because principles can conflict in a given situation, they sometimes have to be ranked, and people can reasonably disagree about how to do this justifiably.

Medical ethics then involve deliberation and explicit arguments to justify particular actions in specific situations. Ethics focus on the reasons why an action is considered right or wrong and asks individuals to justify their positions and beliefs by rational arguments that can persuade others.

Clinical Ethics and the Law

Through statutes, regulations, and decisions in specific cases, the law can provide guidance about what healthcare professionals can or cannot do. Therefore physicians and nurses should be familiar with the law regarding issues in clinical ethics; however, the law cannot provide definitive answers to specific ethical dilemmas. Law and ethics may conflict, and many people might regard some actions that are prohibited by law to be ethical. Similarly, some actions that are legally acceptable may not be seen as ethically permissible. In such conflicts, most healthcare professionals feel uncomfortable about simply following the letter of the law.

Children Are Different

Children are smaller than adults. This fact is obvious, but the practical and ethical implications are substantial. “The child’s small size can contribute to the child’s feeling intimidated by adults, even if unintentionally. Adults must physically look down at children, and children unavoidably must look up at adults. The world is largely designed for adults; so although adults sit down, children must climb up. These simple physical facts both establish and illustrate the relative imbalance of power, influence, and authority between children and adults.”¹⁰

The relatively greater dependence and relatively lower autonomy of children present complex ethical challenges when clinical care is provided to children. Customary ethical principles of autonomy and informed consent can be different in pediatric applications. Common ethical principles such as beneficence and “do no harm” often are more multifaceted and less straightforward. Treatment objectives expressed by parents or other child caretakers can be different from the child’s goals.

Healthcare professionals are ethically compelled to respect and integrate the child’s expressed wishes, the parents’ expressed outcomes, the child’s maturational needs, and the family’s cultured beliefs about family roles and child-rearing practices. Such considerations bring new ethical considerations and challenges to treatment (Box 24-3).

Children are inherently more vulnerable than most adults. Healthcare professionals have even more responsibility for ensuring ethical action than they would have with adult patients. Nurses are in a unique position to identify situations in which parental decisions or a child’s actions jeopardize a child’s health and well-being. Healthcare professionals are given special responsibilities in these situations because if they do not intervene, children might suffer serious, long-lasting harm.

Because children cannot weigh risks and benefits, compare alternatives, or appreciate the long-term consequences of decisions, they are incapable of making informed decisions. As a result, autonomy is less important in pediatrics than in adult medicine. A child’s objections to beneficial medical interventions do not have the same ethical force as an adult’s informed refusals. Because children are immature and vulnerable, they need an adult to make decisions for them and to protect their best interests. Parents are presumed to be the appropriate decision makers.²

Children must be protected from the consequences of their own unwise decisions or those of others. Indeed, it is tragic if a child dies or undergoes serious harm because a simple, effective medical treatment was not provided.

Although young children are not autonomous, their potential autonomy as future adults deserves respect. Parents influence children and shape their behavior and values, and parental values deserve great deference. However, when children reach maturity they might choose values that differ from those of their parents. Healthcare professionals may need to help ensure that parental decisions are not contrary to those of the developing young adult.

As children mature, they become capable of making informed decisions, and their involvement in care should increase. Pediatric critical care unit professionals need to provide the child with information about his or her condition and opportunities to participate in decisions about healthcare, to the extent that it is developmentally appropriate.²

Children also differ from one another. In a very real way, there is no such category as “children.”¹⁰ Infants differ from toddlers, who differ from preschoolers, who differ from school-aged children and adolescents. Furthermore, within any group of children there is wide variability in size, ability, psychosocial development, cognitive development, and maturity. Many children develop inconsistently in physical, cognitive, emotional, social, and moral abilities and characteristics. The individual child may progress and regress in the face of various challenges and traumas, being “childish” one day and a “young lady” or “young man” the next. Children manifest much broader developmental and individual variability than do adults. Consequently, pediatric critical care unit professionals must tailor their approaches and care to the individual state and abilities of each pediatric patient. The child’s ability to engage in particular aspects of care, including its ethical aspects, or to move toward particular goals of treatment can vary with the child’s immediate developmental abilities, themes, challenges, and tasks.¹⁰

The Family Is the Patient

Care for the critically ill child must be family-centered.⁷⁶ Family-centered care is an approach to healthcare that shapes healthcare policies, programs, facility design, and day-to-day interactions among patients, families, physicians, and other healthcare professionals. Healthcare professionals who practice family-centered care recognize the vital role that families play in ensuring the health and well-being of children and family members of all ages. These practitioners acknowledge that emotional, social, and developmental support are integral components of healthcare. They respect each child’s and family’s innate strengths and view the healthcare experience as an opportunity to build on these strengths, and the providers support families in their caregiving and decision-making roles. Family-centered approaches lead to better health outcomes and wiser allocation of resources as well as greater patient and family satisfaction.⁴

Family-centered care in pediatrics is based on the understanding that the family is the child’s primary source of strength and support and that both the child’s and the family’s perspectives and information are important in clinical decision making. Family-centered practitioners are keenly aware that healthcare experiences can enhance parents’ confidence in their roles and, over time, increase the competence of children and young adults to take responsibility for their own healthcare, particularly in anticipation of transition to adult service systems.

Given that the family is the child’s primary source of strength and that the family’s perspectives are important in clinical decision making, the pediatric critical care unit team has a moral obligation to the patient’s family and a duty to increase family access to the pediatric critical care unit. Increased access to the pediatric critical care unit has also resulted in more reports of parental presence during bedside pediatric critical care unit rounds, complex procedures, and cardiopulmonary resuscitation.^16,23,63,68 All patient care units should develop written documentation for presenting the option of family presence during cardiopulmonary resuscitation (CPR) and invasive procedures. Education programs should be developed for healthcare staff to include: the benefits of the family’s presence for the patient and the family, criteria for assessing the family, the role of the professional assigned as the family support person, family support methods, and contraindications for family presence.

Family meetings—when pediatric critical care unit professionals and family members join together to engage in a dialogue and devise a plan of action—are a mainstay of pediatric critical care unit clinical practice. Often the focus of these meetings is developing a consensus regarding the goals and plan of care, and they can help everyone assess the situation and participate in the development of that plan. Collaborative communication builds the foundation on which pediatric care of the highest possible quality can be created. It serves as the key factor in the solution of most ethical dilemmas.

Consent or Permission from Parents or Guardians

“Parents or guardians usually have the authority to give consent or permission for their child’s healthcare and participation in research. Reasons for this social policy include, first, that parents in general have the greatest knowledge about, and interest in, the well-being of their own minor children.”⁴⁰ Another well-recognized reason that parents have legal authority to make these and many other decisions for their minor children is that parents or guardians must address the consequences of the choices being made. Clinicians should generally try to respect the parents’ preferences because of the importance parents play in fostering the child’s well-being and shaping the child’s values.⁴⁰

Parental consent, like other consents obtained in a medical setting, must be adequately informed. That is, the parent giving consent must be provided with sufficient information to understand and authorize the treatment that has been recommended. Clinicians need to reveal all information they know or should know that would be regarded as important to the parents making the decisions. Those seeking consent, for example, should provide parents with information about the diagnosis and prognosis, so that the parents understand the disease process. Reasonable alternative treatment options should also be explained, along with the nature, duration, side effects, or potential harms or benefits of the alternative options. Parents also should be told the likely consequences of no treatment. Clinicians should then test for understanding of the information, for example, by asking the parents questions about what was discussed or asking the parents to explain the procedure or treatment in general terms.

The person who gives consent must have the capacity to make decisions. The terms competent and incompetent are often reserved for legal contexts. Courts can make a determination about whether someone is competent. The presumption is that adults are legally competent and minors are not. Minors—in most parts of the United States this includes those younger than 18   years—are regarded as incompetent to make decisions about their own healthcare, especially if the decisions are momentous.⁴⁰ The reality is that many adults lack decision-making capacity, but have not been declared legally incompetent in the courts, and many legally incompetent minors have good decision-making capacity. Thus, the legal notion of competence and that of decision-making capacity should be distinguished.⁴⁰

For the purposes of healthcare, the term decision-making capacity refers to an individual’s ability to understand information needed to make informed consent, evaluate this information in terms of stable personal values, and use and manipulate the information in a reasonable manner.⁴⁰ For important decisions, clinicians should assess how well those giving the consent can understand the information, deliberate, and make and defend choices. It also is important that those giving consent communicate choices appropriately. These details should help clinicians decide whether parents or older minors have the capacity to make important healthcare decisions.

Consent, assent, or permission also must be given freely (i.e., voluntarily), meaning that it must not be coerced or manipulated. The fact that the parents may be distraught does not make them legally incompetent or unable to give consent. If parents are not competent or are making an inappropriate decision, clinicians may have a legal and moral duty to seek a court order so that the courts can authorize the needed intervention.

Informed consent or permission should have the following elements⁴⁰:

In some cases informed consent can be waived, as in medical emergencies, public health emergencies, or when parents cannot be contacted.

Parents giving consent or permission should be guided by what is in the best interest of their child. Their decisions can be challenged, for example, if they endanger the child. The best interest of the child standard is one of four important standards for medical decision making; the other three are self-determination, advance directive, and presumed consent.⁴⁰ Although the best interest of the child standard is of special importance in pediatrics, each of the four standards has a role in making healthcare decisions for minors.

Assent and Self-determination

Self-determination, as a standard for healthcare decision making, applies to competent adults and to many older or emancipated minors (Table 24-1). This standard of self-determination presupposes that the person is autonomous or capable of self-determination, has informed understanding, and makes the choices voluntarily. The standard honors the basic moral principles mentioned previously; it flows from the moral principle of autonomy or self-determination and honors individual liberty; and it enables people to make choices about themselves, assess their own best interest, and develop their own capacities and life plans as they wish, as long as they do not harm others.⁴⁰

Table 24-1 Glossary of Terms Related to Adolescent Medical Care

Although the law grants full competence on the occasion of a specific birthday (e.g., 18   years of age), this practical and useful legal practice fits poorly with medical decision making. In medicine, it is more useful to view capacity as a matter of degree, and less like the “light-switch” concept found in the law.⁴⁰ In both law and medicine, young children are the paradigm of persons unable to make decisions for themselves. Infants are among the many incompetent and vulnerable, but minors just before the age of majority are as competent as many adults. Most young children lack the capacity, maturity, experience, or foresight to make important decisions for themselves and to determine which decisions promote their well-being and opportunities. As children gain maturity, many seek to understand important healthcare decisions being made for them, and older children may have strong opinions about their care.^{12,25,82,85,87}

To acknowledge the child’s emerging capacities and point of view, and to promote the child’s well-being, clinicians seek the child’s assent in addition to parental permission when possible.^2,40 Healthcare providers may seek the assent or agreement of children as young as 7   years. As minors become increasingly mature and competent, they should be accorded more self-determination. Children with life-threatening or chronic illnesses, for example, may want to participate in discussions and decisions about their care and find that it is a way to gain control and respect.⁸² Ignoring their desires to participate can cause pain, isolation, misunderstanding, and frustration.

Assent is different from consent, because the minor’s preferences need not be honored in the same way as those of adults.⁴⁰ Whether a minor’s preference should be honored can depend on the probability and magnitude of the harms involved and the irreversibility of the consequences. When children cannot enhance their own well-being and opportunities, adults may have to override their decisions and not grant self-determination. The obligation to honor their wishes is not as binding as it would be for an adult.

“In many parts of the world, adults who face serious illness or death are not privy to conversations about their care, because family and clinicians believe that it is kinder to exclude them.”⁴⁰ Such cultural conflicts about how to apply the principles of beneficence and nonmaleficence have the potential to cause serious problems when people travel from one country to another seeking medical care, or when patients or families from other countries receive healthcare in the United States. For example, older adolescents with serious illness may indicate a desire to discuss their prognosis and options with the medical team, while family members strongly object to telling the adolescent. Clinicians can help family members understand the importance of including the child, explaining to the family members that children understand a good deal about their diseases and even imminent death and that excluding them increases their suffering.⁴⁰ Of course, some guardians remain adamant, and clinicians may have to choose between doing what they believe is best for the patients (by informing them) and honoring parental wishes. Other clinicians find that consultations with an ethics committee can help to resolve such conflicts.

The recognition that older children can understand a great deal and be competent to participate in many decisions has been recognized recently in the literature and in social policy.^17,40 As children grow older, they are increasingly able to discuss and participate in health decisions relating to them. Some adolescents have gained authority to make healthcare decisions independently of their parents. Depending on state law, adolescents can get medical care such as contraceptives, contraceptive information and devices, abortions, and treatment for substance abuse without parental permission (i.e., legal emancipation by condition).¹⁷

The ideal situation is to have shared decision making and agreement among clinicians, family, and the child about what course to take. In the ordinary situation, however, parents or guardians have the authority to make decisions for the child’s medical care, just as for religion and schooling, unless they endanger the child. The child’s assent has been found to be increasingly important based on evidence that children with serious, chronic, or life-threatening illnesses understand a great deal and benefit from participating.² In addition, the importance of their assent stems from understanding that they have the competence to make important contributions to these discussions.