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

Modified from Campbell AT: Consent, competence and confidentiality related to psychiatric conditions in adolescent medicine practice. Adolesc Med 17: 25-47, 2006.

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.

Age of Consent: The Mature Minor in Law

State legislation increasingly recognizes that a “light-switch” (“bright line,” or purely age-related) rule regarding who is an adult may not be appropriate (see Table 24-1).^17,82 Greater flexibility is emerging in legal interpretations that allow adolescents, although they are not legal adults, to make certain healthcare decisions. One path leading to adolescent consent authority follows case (common) law, in which courts have given specific meaning and scope to adolescents being sufficiently mature (i.e., the mature minor) to provide consent to treatment.¹⁷ This determination is subjective and is based on a case-sensitive analysis, dependent not only on the adolescent involved but also on the adolescent’s condition and the risks of treatment versus no treatment.

Perhaps the clearest guideline for the mature minor doctrine came in a Tennessee Supreme Court case that established the “Rule of Sevens”: (1) a minor under the age of 7   years lacks capacity; (2) a minor between 7 and 14   years of age is presumed not to have capacity, but that assumption can be rebutted (the burden is on the minor to show capacity); and (3) a minor 14   years of age or older is presumed to have capacity (the burden is on the one arguing against capacity).¹⁸ This rule was acknowledged to be case-sensitive and not a strict standard. As reiterated by a prominent legal authority, a minor’s consent should be effective if he or she is “capable of appreciating the nature, extent and probable consequences of the conduct consented to (e.g., medical treatment),” even if parental consent is “not obtained or is expressly refused.”¹⁷

States have codified a range of situations in which sufficiently mature minors can make their own healthcare decisions, providing exceptions to the rule of parental permission for certain healthcare conditions or based on the status of the minor.¹⁷ These statutes respond to clinician and patient concerns that a desire to seek care of a more sensitive nature (e.g., mental health or family planning services) might be impeded by a requirement for parental permission.³⁰

The distinction between a mature minor and an emancipated minor has become blurred over time. Generally, mature minor consent authority relates to context-sensitive and specific situations, or conditions in which an adolescent demonstrates capacity to make decisions related to healthcare (Box 24-4), whereas emancipation represents a progression into adulthood linked with certain events that are viewed as conferring adult status. However, clinicians with specific questions are urged to consult local legal authorities for guidance.

Advance Directives and Substituted Judgment

Advance directives are used in framing healthcare decisions when the person has become incapacitated. These directives are statements made by the person who has decision-making capacity, stating how decisions should be made when they are unable to make decisions. Adults and some older children may have such directives in order to extend their control over events. Competent adults can use living wills or powers of attorney for healthcare to make known their views about how decisions should be guided and who should make decisions for them. In rare cases, minors can decide that they wish to make their views known.⁴⁰ Although such decisions are not as controlling as those of legally competent adults, they can be morally binding. “Sometimes parents and children disagree about the sort of treatment that is appropriate at the end of life, with each making what the other regards as an inappropriate request. Whenever possible, clinicians should give the requests of the older minor serious consideration and seek a consensus among the family.”⁴⁰

Substituted judgment is another rarely used standard for minors in making medical decisions, because the standard applies to those who were once able to express their views, when no advance directives were created. The standard instructs others to use their understanding of the person’s views to select the option that they think the individual would have selected. Minors who are extremely sick may have expressed preferences that they hope will guide people, and such requests should receive deference if possible.

Informed Refusal of Care

Families who decline medical care for a child present the pediatric critical care unit team with an ethical dilemma: respect for the autonomy and privacy rights of the family and the importance of familial support for any therapeutic endeavor are in conflict with the duty to provide the best available care for the pediatric patient.⁶⁹ The validity of parental consent for children has been taken for granted, although the presumption that parents invariably choose in their child’s best interests may at times be inaccurate. Rights are virtually never absolute and parents are not at liberty to destroy, maim, or neglect their children. The parents’ authority can be contested if the parents place their children at serious risk, such as by refusing to permit the critical care team to provide life-saving interventions to a child. The pediatric critical care unit team’s response to the parents’ refusal of treatment will depend on the clinical circumstances, the benefits and the burdens of treatment, and the child’s wishes in some cases.²⁴

Parents may refuse interventions that have limited effectiveness, impose significant side effects, require chronic treatment, or are controversial. In such situations the parents’ informed refusals should be decisive.⁵¹ Refusal of such interventions might be ethically permissible even if the patient’s life expectancy might be shortened.

Parents sometimes refuse treatments for life-threatening conditions, although these treatments are highly effective in restoring the child to previous health, are short term, and have few side effects.⁷ It has been suggested that parents might refuse a medical recommendation for at least three categories of reasons: neglect, disagreement based on religions or other values, or inability to comply.⁴⁶ Jehovah’s Witnesses commonly refuse blood transfusions for their children even when the child has suffered life-threatening hemorrhage or anemia. Similarly, Christian Scientist parents often refuse antibiotics for bacterial meningitis. Physicians who are unable to persuade parents to accept such interventions should seek a court order to administer the treatment.^52,70 A court order is important because it signifies that society believes that the parent’s refusal is unacceptable.⁵¹ As one court declared, although “parents may be free to become martyrs themselves,” they are not free to “make martyrs of their children.”⁶⁷

The American Academy of Pediatrics recognizes the “important role of religion in the personal, spiritual, and social lives of many individuals and cautions physicians and other healthcare professionals to avoid unnecessary polarization when conflict over religious practices arise. Nevertheless, professionals who believe that the parental religious convictions interfere with appropriate medical care that is likely to prevent substantial harm, suffering or death should request court authorization to override parental authority or, under circumstances involving imminent threat to a child’s life, intervene over parental objections.”³

Frequently, the most difficult dilemmas arise when parents refuse interventions that are highly effective in serious illness but also highly burdensome, such as bone marrow transplantation in acute lymphocytic leukemia or combination chemotherapy in advanced cancers such as testicular carcinoma. In these situations, the child’s preferences might be important. If an older child or adolescent makes an informed decision to undergo such treatment, the pediatric critical care unit team should support that decision.

If parents continue to refuse such therapy after repeated attempts at persuasion, some physicians seek court orders to compel treatment. In doing so, physicians need to account for the effects on long-term parental cooperation with the child’s care. At the least, physicians should listen to the parents’ objections and show respect for the parents’ opinions and the ongoing responsibility of the parents for the child.

Child’s Refusal of Care

In some cases children might refuse effective treatments. The physician’s response should be determined by the seriousness of the clinical situation, the effectiveness and side effects of treatment, the reasons for the child’s refusal, the parents’ preferences regarding treatment, and the burdens of insisting on treatment. It is difficult to force adolescents to take ongoing therapies, such as insulin shots for diabetes or inhalers for asthma. The most constructive approach is to try to understand the patient’s reasons for refusal, address them, and provide psychosocial support. In several cases adolescents have run away from home rather than accept cancer chemotherapy, which has significant side effects.⁸² Because it is physically difficult and morally troubling to force such treatment on adolescents, these refusals have been accepted, particularly when the parents have supported the child’s refusal. Sound ethical practice requires pediatric critical care unit professionals to respect the dignity of each adolescent patient by hearing and understanding the patient’s discussion of values and expressed concerns about medical treatment.⁸²

Baby Doe Rules

The Federal Child Abuse Amendments of 1984 and subsequent regulations, commonly called Baby Doe Regulations, apply to decisions to withhold medical treatment from disabled infants younger than 1   year⁶⁰; they limit the circumstances in which interventions may be withheld.

Under these regulations, treatment other than “appropriate nutrition, hydration, or medication”⁶⁰ need not be provided if (1) the infant is chronically and irreversibly comatose; (2) the provision of such treatment would merely prolong dying, not be effective in ameliorating or correcting all of the infant’s life-threatening conditions, or otherwise be futile in terms of the survival of the infant; or (3) the provision of such treatment would be virtually futile in terms of the survival of the infant, and the treatment itself under such circumstances would be inhumane. The regulations note that decisions to withhold medically indicated treatment might not be based on subjective opinions about the child’s future quality of life. In addition, hospitals are encouraged to establish ethics committees, specifically infant care review committees, to advise physicians in difficult cases.

The Baby Doe Regulations have been sharply criticized.^42,43 Many terms, such as appropriate and futile, are subject to conflicting interpretations. Most importantly, parents are not included in decision making despite their customary role as surrogates. The pediatric critical care unit team should appreciate that these regulations do not require them to provide treatment that, in their judgment, is inappropriate or futile.⁴²

Inappropriate Care Requests

At times, parents may request the pediatric critical care unit team to provide care that is useless or inappropriate. The pediatric critical care unit team has a duty to refuse requests that are illegal or that can cause harm, based on the moral principles of nonmaleficence. In addition, the team has a social duty to conserve resources and not provide costly, futile, or excessively burdensome interventions. The question of when treatments are futile may be disputed among families or among healthcare professionals.

Parents may request inappropriate treatment for a number of reasons (Box 24-5). Many requests for inappropriate interventions are the result of miscommunications.⁴⁰ Some of these miscommunications are embedded in social, ethnic, or religious differences. In some cases, families have unrealistic expectations, believe “everything must be done,” or are “waiting for a miracle.” Guilt and denial also may play a role in these irrational and unreasonable requests.⁴⁰ Clinicians should show great sensitivity and patience in helping families come to terms with a diagnosis or prognosis.

In some cases, families have a general mistrust of the healthcare system; this mistrust may appear to be vindicated by an unexpected and bleak prognosis.⁴⁰ The family’s request for inappropriate treatment may be an expression of this mistrust. It is sometimes helpful to include someone whom the family can trust, such as a minister or family member with a healthcare background, who can help the family understand. In rare cases, the disagreement is truly a value disagreement in which family members may, for example, see maintaining someone in a persistent vegetative state as a positive value, whereas the clinicians do not. In these and other cases, healthcare professionals should maintain professional integrity and personal morality, but may find other clinicians willing to accept the families’ decisions. Substantial literature^15,29,69,40 exists on how to respond to such situations, when to override parental requests, and the dangers of using decisions about what treatments are futile as mechanisms for rationing healthcare.

In general, it is important for the pediatric critical care unit professional to remember that most demands for inappropriate interventions are likely to be the result of poor communication and inadequate understanding. The pediatric critical care unit team must spend the time necessary to approach the specific ethical dilemma (see Box 24-1). Discussion with an ethics committee or an ethics consultant may help clarify the facts and points at issue and return the child to the central role, a role sometimes lost during heated disagreements.

Truth-Telling

Codes of medical ethics have traditionally ignored the obligations and virtues of veracity. The Hippocratic oath does not address veracity, nor does the Declaration of Geneva of the World Medical Association. As recently as 1980, the Code of Medical Ethics of the American Medical Association made no mention of veracity or truth-telling as either an obligation or a virtue, giving physicians unrestricted discretion about what to disclose to their patients; this changed in the 1997 edition of the code.⁶

In medicine, there is a long and distinguished tradition of providing less than the whole (unvarnished) truth.^36,47,48 In The Silent World of Doctor and Patient, Katz shows that, from the time of Hippocrates until the late twentieth century, doctors routinely withheld the truth from patients and vigorously defended the morality of their decisions to do so.³⁶ The arguments for withholding the truth varied. Some of the arguments were centered on the patient, arguing that the truth might be too difficult to bear. “Reassure the patient and declare his safety, even though you may not be certain of it,” wrote Isaac Israeli, a ninth-century physician, “for by this you will strengthen his Nature.”³⁶ Other arguments focused on the physician and his moral obligation to foster hope. Thomas Percival, writing in the late eighteenth century, counseled doctors, “The physician should be the minister of hope and comfort to the sick.”³⁶ Some of the arguments were economic, contending that doctors who admitted uncertainty would frighten and discourage patients and would soon go out of business. None of the arguments were apologetic.⁴⁷

Following this ancient moral tradition, doctors learned to withhold potentially stressful information, to conceal bleak diagnoses, and not to discuss the risk of treatments or procedures. In doing so, doctors were following the moral maxim of either saying nice things or saying nothing at all.

In light of this history, recent moral sentiment that the physician should tell the patient the truth—the whole truth, no matter how horrible it might be or how ill-prepared the patient might be—represents one of those mysterious changes in morality that occur from time to time, whereby something that was once thought morally intolerable is suddenly thought of as morally obligatory.⁴⁷ When noting such a moral watershed, it is important to ask why the change occurred. Generally, it is not that morality itself changes. Instead, historical circumstances change so that people must react differently to new situations and reevaluate conventional moral wisdom.⁴⁷

There are many reasons for the changes in attitude toward truth telling among physicians.³¹ Such reasons may include the availability of more treatment options, improved rates of survival, fear of malpractice suits, involvement of multiple team members in hospitals, altered societal attitudes about medicine in general, greater attention to patients’ rights, and increased recognition by physicians that communication is an effective means of enhancing patient understanding and compliance with healthcare.³¹

The obligation of veracity is based on the respect owed to others and is therefore rooted deeply in the principle of respect for patient autonomy.^2,31,48 This obligation is the primary justification and basis for rules of disclosure in informed consent. The obligation of veracity exists even when consent is not an issue, and it is the guiding precept of the duty of respect toward others. Veracity is closely related to the obligations of fidelity and promise keeping.

When any two parties communicate, there is an implicit promise that both will speak truthfully and that they will not deceive each other.³¹ A patient becomes part of a contract, or a covenant, by entering into the therapeutic relationship. Although children may not legally be allowed to enter into formal contracts independent from their parents or guardians, the implied promise remains important. Such a contract includes the patient’s right to have his or her wishes respected regarding diagnosis, prognosis, and treatment procedures. Cultural beliefs may affect the patient’s wishes, as might limitations on a family’s desire for full disclosure and informed consent.

Discerning the patient’s and family’s wishes can require experience, skill, listening, and time. In this truth-telling process, the health professional also expects to gain the right to truthful disclosures from the patient. Relationships between healthcare professionals and the patients and their parents ultimately depend on communication and trust. With respect to children, such dependence can be frustrating; although children are generally more honest and forthright than adults, they may act to protect their parents.³¹

There are certain culture-specific situations in which adult patients prefer not to receive complete information about their diagnosis and prognosis. Whether these feelings hold true for the children from these cultures has not been formally studied. Respect for autonomy suggests that cultural factors must be represented when considering disclosure to patients. Pellegrino warns against the use of assaultive truthfulness, suggesting that to “thrust the truth on a patient who expects to be buffered against news of impending death is a gratuitous and harmful misinterpretation of the moral foundations for respect for autonomy.”⁶²

Parents of children and adolescents occasionally request that the physician not disclose a diagnosis or prognosis to the young patient. Such a request creates an ethical dilemma for the practitioner; the conflict between a duty to respect the parents’ wishes and a duty to tell the truth to the child.⁷⁸

The authority of parents to direct the flow of information to the child and to organize and provide appropriate systems of emotional support is well recognized in pediatric care. Parents are regarded as moral agents for their children; pediatricians perceive that the integrity of the patient’s family is necessary to sustain and nurture the child. Still, parental authority cannot be absolute. A “best interest” standard that extends beyond parents’ wishes is recognized in nontreatment decisions for severely ill neonates and children, in the treatment of children whose parents have religious objection to usual care, and in the confidential care of adolescents.⁷⁸

If there is a moral justification for lying to the patient or willfully hiding the truth, it must have a strength that overrides the principle of veracity derived from basic human respect. People deserve to be told the truth, and circumstances must be morally persuasive when considering deviating from this basic moral duty.³¹ One must ask whether concealing the diagnosis, not using the name of the disease, and not speaking to the child about prognosis will do more harm than good.

A related subject to truth-telling is the disclosure of medical error. This discussion is included in the Chapter 24 Supplement on the Evolve Website.

Confidentiality

The importance of confidentiality in medical practice has been acknowledged since ancient times.⁴¹ Respecting patients’ confidentiality usually promotes the moral principle of beneficence or the patients’ best interest. If patients are assured of confidentiality, they are more likely to be candid. Moreover, because privacy is what each of us wants for ourselves, it is only just to extend it to others. In addition, it is fair to adopt this policy of respecting confidentiality because, in a sense, patients own the information about themselves, and confidentiality honors their privacy and rights to control this information. If some information about the patient is released, such as a genotype for a late-onset genetic disease, it has the potential to cause harm through discrimination, labeling, or loss of self-esteem.

The social utility of respecting patients’ confidentiality is also acknowledged in policies allowing physicians to avoid testifying about patients’ revelations to them in healthcare settings. Confidentiality can be as important for minors as it is for adults. Minors, for example, may seek medical care as a safe haven to express how they have been intentionally injured or exploited.

Concerns about confidentiality create a major barrier to effective healthcare for many adolescents.¹³ Adolescents are more likely to seek healthcare and to disclose personal information when they believe that the information will be kept confidential.

The clinician’s duty to maintain confidentiality, however, is not absolute. The presumption in favor of confidentiality can be overruled if there is a greater duty at stake or if there is a recognized exception.⁴¹ For example, an exception to the duty to maintain confidentiality is to protect a third party, as in intentional injury to children. If clinicians suspect that someone is abusing a child, they have a legal and moral duty to override confidentiality because a greater duty—the duty to protect the child—is present. In addition, there may be a duty to override confidentiality if there is a need to protect a patient from himself or herself; there may be such a duty if the minor is suicidal. There also may be a duty to protect the community that is greater than the duty to maintain someone’s confidentiality, such as a duty to report communicable diseases or gunshot wounds, regardless of the patient’s wishes.⁴¹

Breaking Bad News

Although breaking bad news is difficult and stressful for everyone, being uninformed is even more stressful for patients and families.^14,31 One of the most common complaints of patients and families is the lack of accuracy, clarity, and consistency in the information provided.³¹ Family members indicate a willingness and desire to receive bad news as long as it is empathetically communicated.³¹

The diagnosis and prognosis associated with chronic conditions often provide confirmation of what was already suspected, so confirmation of the diagnosis frequently provides relief and reduction of anxiety. Reactions to bad news in the setting of an acute event are much more dramatic. In either case, accurate information allows a shifting of the goals of medical intervention and allows the patient, family and friends the support and opportunity to adjust to the new information. Effective and compassionate communication may even allow a child to be discharged from the critical care unit to die at home, or to die in a more private area of the hospital.

Sometimes, in response to their own pain, medical caregivers communicate the news of a bad prognosis in a brief encounter and may use technical terms to soften the blow, avoid the conversation altogether, or wait until the child is unconscious. Research on breaking bad news does not support the use of these techniques. Further discussion of this important topic is covered in Chapter 3.

The Do-Not-Attempt-Resuscitation (DNAR) Order

The do-not-attempt-resuscitation (DNAR) order is often the focal point for controversy surrounding limitations in life-sustaining treatments. DNAR orders are unique. They are the only physician’s order that is focused exclusively upon what will not be done, rather than what will be done.

The concept of doing less than everything possible to preserve the life of the patient is not new. The Hippocratic corpus advises physicians “to refuse to treat those who are overmastered by their diseases, realizing that in such cases medicine is powerless.”¹⁵ Even the earliest researchers in the field of resuscitation recognized that CPR should be used only in circumstances of reversible cardiac arrest. Unfortunately, no clear criteria exist for determining when cardiac arrest is irreversible.

In the absence of any clear guidelines for withholding CPR, by the early 1970s CPR was widely regarded as a mandatory procedure for any patient experiencing a cardiorespiratory arrest. Physicians practicing in hospitals therefore faced a dilemma; clearly it was wrong to perform CPR on patients who were imminently dying of a terminal disease, yet there was little precedent in medicine for allowing patients to die when procedures were available that might prolong life, even if only for a brief period of time.

Over the past 30   years, DNAR orders have become increasingly accepted, such that the Joint Commission requires healthcare institutions to have DNAR policies. More recently, however, it has become evident that a simple DNAR order fails to address the complexity of decision making for terminally ill patients.

In most hospitals, DNAR orders are written by the attending physician in the doctor’s orders sheets. These orders are often vague and can leave substantial opportunity for miscommunication and error. Does “attempted resuscitation” refer to treatment of an acute cardiac arrest (intubation and ventilation, chest compressions, cardioversion, and medications), or does it also include “do not intubate” conditions such as respiratory failure from a pneumonia? Should patients with DNAR orders receive hand ventilation and suctioning for airway secretions, be treated with antibiotics, or given tube feedings? Should they be excluded from admission to the critical care unit, or denied palliative surgery? The answers to these questions are almost never clear in the interpretation of a simple DNAR order.

In response to these concerns, many institutions have adopted procedure-specific DNAR orders. This approach is intended to reduce much of the ambiguity surrounding DNAR orders. The greatest advantage of the procedure-directed DNAR order is its clarity. This type of order must be supplemented with a detailed note in the chart explaining the justifications for the order and documenting the discussions between the clinicians and the patient or surrogate. By focusing on procedures, the form addresses in concrete terms exactly what will or will not be done in the event of a cardiorespiratory arrest. For example, Mittelberger and others⁵⁶ found that the number of ambiguous DNAR orders was decreased from 88% to 7% after implementation of a procedure-specific DNAR order form. Two other studies have also documented improved communication among physicians and nurses after adopting procedure-specific DNAR order forms.^32,61

DNAR replaced the older term do not resuscitate (DNR).⁵⁷ DNAR presupposes that there is no guarantee that resuscitation attempts are going to be successful. This shift in terminology arose partly in response to the realization that the general public had a falsely optimistic perception of the success of resuscitation. The term DNAR is not, however, specific enough to stand alone; it also requires specific orders.⁵⁷

Another controversy concerns whether it is necessary for physicians to obtain the consent for DNAR orders from the patient or the patient’s family.^11,79 Many hospitals address this issue in internal hospital policies.⁵⁴ Some hospitals, however, have adopted policies that permit physicians to write DNAR orders without the permission, or sometimes without the knowledge, of the patient or family. The presumption behind this approach is the view that CPR is a medical therapy and that physicians are uniquely qualified to determine whether and when a medical therapy is indicated. These policies are often referred to as CPR-not-indicated policies.⁸⁴

However, this development in DNAR orders should be viewed with caution. Physicians have a long history of seeing complex situations from a uniquely medical perspective, ignoring important factors related to the patient’s values and preferences. Rarely is the question of whether to perform CPR purely a medical issue. Often the patient’s or family’s denial of impending death can be overcome by proper counseling, whereas simply using the physician’s authority to overrule the family’s wishes can be profoundly destructive to the patient-physician relationship.

There has been a recent call to modify the standard terminology further and replace the term DNAR with the term allow natural death (AND).^38,57 Rather than emphasizing that something is being withheld, AND focuses on the benefits of allowing a natural process to take place. Although it initially seems to be a mere semantic issue, medial centers that have changed the terminology report easier conversations with patients and families about response to the end of life.⁵⁷ It must be acknowledged that in the highly technologic environment, such as the pediatric critical care unit, the concept of “natural” death is rendered virtually meaningless.²⁰

Not surprisingly, patients with DNAR orders often believe they have been abandoned by their caregivers. Indeed, it is often the case that physicians do in fact spend less time caring for patients who have DNAR orders. This is not appropriate, as patients with DNAR orders often need more attention in terms of aggressive palliative care than patients who are not imminently dying (see Chapter 3).

In addition, DNAR orders tend to be concerned with only a small fraction of the issues that arise with dying patients. Often the question of whether resuscitation should be attempted is actually peripheral to the more important questions surrounding the use of less dramatic interventions.

In discussing resuscitation, the pediatric critical care unit professional must remember that DNAR does not connote do not respect. By empathetic and compassionate communication, resuscitation decisions can be made that are right for the patient and the patient’s quality of life.

Withdrawal of Medically Provided Nutrition and Hydration

During the last two decades there has been a gradual consensus emerging in both law and ethics that medical nutrition and hydration can be withheld or withdrawn by the same standards that apply to other life-sustaining treatments. Specifically, it can be withheld or withdrawn after an analysis of the balance between the benefits and burdens of providing the therapy.^{22,34,49,53,58,66,77}

Whereas this consensus has achieved wide acceptance among healthcare professionals caring for adult patients, professionals who care for children have been more reluctant to accept this approach.^34,44,49 Decisions about the technologic administration or withdrawal of nutrition and hydration from a terminally ill child are among the most ethically troublesome that pediatric healthcare professionals face. Part of the reason for this difficulty may be the view that nutrition and feeding is such a basic and fundamental aspect of the care provided to children.

Providing food is deeply symbolic of nurturing, caring, and commitment in the human experience.⁴⁴ The dilemma centers on whether food and fluids, provided by gastric and enteral tubes or parenteral administration, preserves life or prolongs death. Expert opinions range across the spectrum: from the belief that withholding or withdrawing food and fluids is active euthanasia to a perspective that administered nutrition and hydration will increase the dying persons’ discomfort and only delay the inevitable. Despite the fact that artificial nutrition and hydration is viewed by a majority of the U.S. Supreme Court⁴⁴ as medical therapy that may be withheld, it is administered to a significant number of terminally ill patients.

During the course of an illness, a patient often loses the ability to receive, desire, or require nutrition or hydration by natural means. When a patient can no longer receive food and fluids normally, artificial nutrition or hydration are medical treatments that can benefit the patient by helping the patient to maintain proper nutrition and fluid and electrolyte balance. Because inadequate nutrition and hydration can result in death, artificial nutrition and hydration can also benefit the patient by supporting life. On the other hand, artificial nutrition or hydration can sometimes cause harm to the patient. Although healthy people feel hunger when they are deprived of food and thirst when they are deprived of fluids, patients who are dying may no longer feel hunger and thirst. During the body’s natural dying process, the body starts to shut down and the patient may lose the desire for food or fluids. Because artificial hydration and nutrition may cause harm to the patient, feeding a dying patient can sometimes do more harm than good.

Clinical experience, validated by research, has demonstrated that imminently dying persons experience loss of appetite and a natural process of dehydration. Organ systems function less efficiently until they fail, and the desire to eat and drink is lost.⁴⁴ Clinical observations of hospice patients’ final stages indicate that most terminally ill patients do not experience hunger and often exhibit isotonic dehydration. Benefits from end-stage dehydration include the release of endogenous opioids and the analgesic affect of ketosis.⁴⁴ There is decreased urine output, diminishing incontinence; lessened edema, decreasing the risk of pressure ulcers; and reduced pulmonary and gastric secretions, relieving congestion, coughing, and vomiting.⁴⁴ With total parenteral nutrition, the adverse effects of fluid overload, local bleeding and infection, and sepsis may be significant and shorten life while diminishing its quality.

Oral feedings by mouth, to the extent possible, are a part of comfort care for the imminently dying patient, but in most cases the aggressive use of parenteral nutrition or feeding tubes is not. The benefits are outweighed by undue burdens and complications when measured against quality of life.

Some healthcare providers may be concerned that withholding or withdrawing artificial nutrition or hydration is the same as starving a patient, but this is usually not the case in a patient who is dying. When a dying patient, or his or her surrogate decision maker, decides to forgo artificial nutrition or hydration, the patient’s disease is the cause of death. From a medical perspective, withholding or withdrawing artificial nutrition or hydration from a dying patient is no different from the decision to forgo any other medical treatment, such as mechanical ventilation, which may prolong death.

Artificial nutrition and hydration are medical treatments that have no necessary connection to caring. Patients who are not receiving artificial nutrition or hydration may still be provided with adequate care. The medical and nursing staff can still provide a great deal of palliative care for the dying patient that does not involve the administration of artificial nutrition and hydration.

The American Academy of Pediatrics has recently concluded that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances.²² As always, when particularly difficult or controversial decisions are being considered, consultation with experts in ethics is strongly recommended.