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Bioethics in Pediatric Practice

Author: Linda Grossman, MD, Associate Professor, Division Head, Department of Pediatrics, Division of Behavioral and Developmental Pediatrics, University of Maryland School of Medicine
Coauthor(s): Daniel A Beals, MD, Associate Professor, Department of Surgery, Section of Pediatric Surgery, University of Kentucky
Contributor Information and Disclosures

Updated: Aug 18, 2006

Introduction

Ethics and Medicine

Even before Hippocrates, ethical behavior and medical practice have been linked. The Mesopotamian Empire's Code of Hammurabi outlined the physician's dual responsibility to the patient and to society. The Hippocratic Oath, still pledged in many medical schools, defines physician character and patient care responsibilities. Although bioethics as a separate field of study has branched out and become mature in its own right, ethical behavior remains fundamental to the practice of medicine and defines medicine as a profession. This special or additional obligation to patients (or clients), with its inherent responsibilities and limitations (eg, confidentiality) exists in few other professions (eg, the clergy, law).

Ethical decision-making can be especially challenging for pediatricians. The patients themselves have limited life experiences and are developmentally unprepared to make decisions about their care. Instead, pediatric patients depend on their parents or another authority figure because young children often cannot understand what is best for them or the ramifications of their actions. Their immaturity and vulnerability create a different decision-making context than that of adult patients.

Specific Pediatric Issues in Bioethics

The problem of informed consent

With adults, the principle of autonomy is the focus of consent, meaning that patients have the right to make their own decisions. The physician's responsibility is to inform the adult patient about the disorder. The physician is expected to describe the proposed treatment, including its likelihood of success, risks, benefits, and costs. The physician should also discuss other treatment options, including the option of no treatment, again in terms of risks, benefits, and costs. This discussion should occur in a manner such that the patient can understand what is being discussed and, if appropriate, have an opportunity to review the information in a printed format, as well. The patient is then asked to give specific consent for the treatment or intervention planned. Key elements include providing adequate information, assessing patients' understanding of the information, and then assuring that patients have the freedom to choose the treatment that they feel is best for them.

In child or adolescent patients, the circumstances are more complicated. Legally, parents or legal guardians have the right and responsibility to give (or withhold) consent for procedures or treatments. This, of course, assumes that parents or legal guardians will act in the best interests of the child because of their close relationship with the child. In children, the principle of "best interests of the child" is more central than the one of autonomy. In addition, involvement of the child in a developmentally appropriate fashion in the decision-making process is also considered the ethical responsibility of the physician.

Best protection for the child

Hippocrates wrote to his fellow physicians that, in working with patients, physicians should "First, do no harm." This time-tested maxim continues to hold true. However, defining benefit or harm is sometimes difficult. The problem in pediatrics is even more pronounced because, in many instances, patients cannot speak for themselves and/or do not have the developmental maturity to balance short-term discomfort against possible long-term positive outcomes. Because children are not free agents, their welfare should be protected to a greater-than-usual degree.

The process of determining the best course of therapy involves setting both short- and long-term goals, recognizing the specific values of the child's family and cultural groups, and maximizing opportunities for the child to grow, develop, and realize his or her fullest potential. Ideally, both the parents or legal guardians and the physician should approach the issue of consent from this perspective. However, sometimes, the legal guardians or even the physician has competing interests. In those situations, special care should be taken to keep in mind at all times what is in the best interests of the child. Examples of this kind of problem are when a family is strained financially because of the costs of the child's medical care or feels that siblings have been neglected because of the time required by the sick child.

Similarly, in the case of physicians, the doctor who asks a family to give consent for organ harvesting and donation if life support is turned off for their child should not be the physician who will be transplanting those organs into someone else.

Physicians as advocates

Decisions about the best course of therapy for a child often involve issues beyond medicine. A child's social structure, environment, and parental involvement all affect these decisions. The physician is placed in the role of an advocate for the child. Although this advocacy role is somewhat uncomfortable at times, it is one of the features of medicine as a profession, rather than the merely technical exercise of human body repair and maintenance.

The potential adult

Children should always be treated with an eye toward their eventual adulthood. As they mature, children naturally gain increasing responsibilities for decision-making and self-expression. Medical decisions are no different. Clearly, by age 13 years, most patients should be able to understand the basic aspects of their disease process, participate in discussions about therapeutic options, and express their preferences about treatments. Although older children remain emotionally and financially dependent on their parents, physicians should respect their increasing autonomy by involving them more in the decision-making process.

Standards in Making Decisions for Children

The best interest of the child

The concept of best interest is probably better suited to legal analysis than to medicine. Its 2 components are (1) to determine the optimal therapy, considering both the strictly medical aspects (eg, effectiveness, risk, severity, likelihood of possible complications) and other aspects, such as the child's social and cultural environment, and (2) to determine what the child's preferences would be if he or she could comprehend the issues in a mature fashion and express an opinion about the proposed therapy.

Both aspects of this analysis can be problematic because both involve some degree of subjectivity. Decisions about quality of life and issues of duration versus quality of life are influenced by myriad factors. Healthy adults sometimes have difficulty empathizing with chronically ill children or their parents. In many instances, healthy people underestimate the quality of life of persons who are chronically ill.

Parental capacities to deal with the special needs of a chronically ill child may also differ; some parents derive great reward and satisfaction from rearing a child with a severe disability, while others feel that the child would be better off dead than living with such severe impairment. These diverse opinions have led to many legal discussions about the proper treatment for children with disabilities.

Despite its subjectivity, the best-interest standard has been effectively used to recognize the interests and rights of the child as individuals separate from their parents. The foundation of this standard is an overarching social morality, a set of values that are shared by different cultures. The pluralistic nature of modern society may strain this common set of virtues, but these values retain an important role in determining the treatment of children.

The child's preferences

Autonomy is not an all-or-nothing principle. Children gradually become more autonomous as they mature and better comprehend the world around them. Young children cannot fully understand the long-term ramifications and goals of treatment and, for this reason, often reject immediate- or short-term discomfort. Children cannot provide informed consent because they lack the capacity to become fully informed.

As a result, the surrogate decision maker is asked to fully evaluate the proposed treatment and to render consent or refusal. Assent of the child—simple agreement to the treatment—is important but not decisive. The importance afforded this assent relates to the age and capacity of the child. A toddler does not usually assent to an immunization shot, yet the child's objection is clearly overruled by the long-term benefit. The case of a 15-year-old with cystic fibrosis who refuses further pulmonary treatment would require more scrutiny.

In all cases, physicians should explain the proposed intervention in age-appropriate language and seek assent from the pediatric patient. The physician should listen and respond to patients' concerns. Expressions of empathy and appropriate efforts to lessen discomfort are all key parts of ethical and compassionate care. Offering an apology for intervention performed without the child's assent is often appropriate. Such an apology is not an admission of wrongdoing but one of empathy.

Parental and family interests

Dependent children are subject to the authority and discipline of their parents or other responsible figures. Physicians should respect the aptitude, resources, and cultural values of these individuals. The decision about what is best for the individual child must be balanced against decisions about what is best for the family, collectively, or what extraordinary burden might be placed on another family member. Understanding the wide range of factors that go into an individual family's decisions has become more challenging in today's diverse society.

The physician may disagree with the ethical decision-making of the family. Often, further discussions help both parties arrive at a consensus. However, the medical care staff may not be comfortable with the decision. The Bioethics Committee of the American Academy of Pediatrics (AAP) discusses this in terms of when a surgeon or an anesthesiologist is not comfortable agreeing to follow a Do Not Resuscitate (DNR) order in a child who is scheduled for surgery. The Bioethics Committee recommends that the doctor who does not feel comfortable following the agreed-upon plan find someone else to take his place. In other cases, consulting with the institutional ethics committee may be useful to get help in finding a plan that all can agree to follow.

Participants in Medical Decisions for Children

Presumptive parental decision-making

In the United States and worldwide, parents have wide latitude and discretion in childrearing. Based upon the genetic bond and social aspect of family, parents are presumed to be the most appropriate decision-makers for children. Parents embody the characteristics required to be a surrogate proxy for consent and treatment; they have affection for the child, they have a long-term relationship with the child, and they have a legal obligation to care for the child.

Because most parents desire treatment to prolong their child's length and quality of life, they usually accept physician recommendations for these treatments. However, difficulty may arise when parents and physicians disagree about treatment. These situations require careful analysis of the wishes of the child, parents, and physician to determine if this presumptive parental privilege should be countermanded.

Exceptions to parental decision-making

In some circumstances, the best interests of the child are not served by parental decision-making. A parent may abdicate responsibility for the child and voluntarily withdraw from decision-making. Substance abuse, mental disability, or immaturity may make a parent incapable of providing informed consent. In these cases, clinicians should seek a court-appointed guardian. In other cases, parents disagree with one another. While only one parent is usually required to sign in agreement for a medical procedure or treatment, turning to the other parent for consent and then automatically proceeding ahead when one parent has already refused is not considered ethical. This is true whether the parents with legal decision-making authority are married to each other or not. The physician might talk with the other parent about the issue but would need to involve both in any change of decision.

Emergencies

Situations when the child's life is in imminent danger and the parent cannot be informed should be treated with bias toward preserving life and limb at all cost. To ensure that the child's best interests are served, erring on the side of treatment rather than foregoing treatment is appropriate. A typical example is trauma surgery for a child injured in an automobile crash in which the parents are also injured and unable to respond. Few children have advanced directives concerning care; if the physician later learns from the parent that the extent of treatment exceeds the parent's wishes, treatment can then be discontinued.

Physician and parental disagreement

Physicians and parents sometimes disagree about which course of action constitutes the best interests for a child. This conflict may arise from several factors. Parents may be poorly informed about a disease process and its treatment, or they may distrust the physician providing information. In these cases, open communication is essential. Physician efforts to defuse mistrust and correct misinformation from sources such as relatives or folklore help the parents make a more informed judgment. Opinions contrary to the physician's should not be dismissed without consideration. Careful consideration and respect of all parties involved create a better relationship for communication. Often, modifying the proposed intervention to take into account the parent's concerns or encouraging him or her to seek a second opinion from another respected authority allows them to then give consent.

Certain situations occur in which physicians should oppose parental actions or decisions. The clinician must always report suspected child abuse or neglect to proper authorities, regardless of parental wishes. In these situations, the possible harm to the child overrides the traditional physician virtues of trust and confidentiality. Proper evaluation also ensures a more unbiased opinion about the reality of abuse or neglect.

Adolescent patients

As children mature, they become more able to make informed decisions about their health care. In the United States, persons aged 18 years are legally considered adults and can generally provide informed consent without parental approval. The AAP recommends that physicians obtain assent for health care decisions from children aged 13 years and older. Between age 13 years and legal adulthood, pediatricians should evaluate the child's ability to understand and provide informed consent. Important factors in assessing the child's capacity include their understanding of the proposed intervention, the risks, indications and alternatives, and the short- and long-term consequences of the decision.

Emancipated minor

Adolescents who clearly live without parental support can be classified as emancipated minors. Evidence of emancipation includes living apart from parents, managing one's own finances, marriage, bearing and raising children, or serving in the armed forces.

Specific exceptions

Most states allow a minor to consent to treatment without parental involvement for sexually transmitted diseases (STDs), contraception, and pregnancy. The assumption in these instances is that requiring parental involvement deters the child from seeking treatment. Some states also allow diagnosis and treatment of substance abuse and mental health disorders for older adolescents without parental consent.

The Pediatrician-Patient Relationship

Disclosure of information to children

Children should be provided information that is presented in an age-appropriate manner to help them participate in decision-making. Parents sometimes hesitate to share information about a serious diagnosis such as cancer or HIV infection. The pediatrician should anticipate parental fears and concerns and help them understand that their child can better cope with the illness when truthfulness and trust are maintained. Helping them plan what they will tell their child or even role-playing the telling is often helpful.

Sometimes reminding parents that the child will eventually learn about his or her condition, whether that disclosure is intentional or accidental by another health care worker, is helpful. Being told by parents in an age-appropriate fashion earlier rather than later helps prevent accidental disclosure and helps prevent children from feeling that they cannot trust their parents or physician. In addition, not having been told gets in the way of children being able to ask about the things that

concern them.

Confidentiality

Physicians should maintain the confidentiality of pediatric patients as they would any other patient. In cases that involve pediatric patients, the surrogate decision maker or guardian is the person to decide with whom the information may be shared. Adolescents can request confidentiality, even from parents or guardians, in specific cases, such as pregnancy or STDs. In these cases, the physician should encourage the patient to discuss the situation with a responsible adult friend or family member.

When family rights and public health needs conflict: Parental refusal of immunization of children

Parental refusal to vaccinate a child is a special challenge. In this case, the gains and risks for the individual child need to be weighed, as well as the public health risk an unvaccinated child poses to other children. The prevention of mortality and morbidity caused by the diseases depends both on the vaccination of a particular child and the effects of herd immunity, limiting the number of unvaccinated children to spread the disease. As a result, key considerations include whether the parent withholding immunizations from their child harms that child enough that their decision constitutes medical neglect. Equally important is whether their failure to immunize their child puts others at risk enough to constitute a significant public health issue.

The situation surrounding decisions about immunizations highlights the important role that the physician plays in educating parents about the true benefits and risks of immunizing their child versus the risks in not immunizing him or her. In the vast majority of cases, the risks to an individual child from not being vaccinated far outweigh the risks associated with the vaccine. However, by finding out more about the parents' concerns, the physician may be able to propose a solution that addresses their main concerns but still results in the child being vaccinated. For instance, some parents may feel more comfortable about their child being vaccinated if they do not receive multiple vaccines at the same visit.

At other times, allowing the parents the right to decide not to vaccinate their child is best, assuming that their child has not been put in a situation with dramatically increased risk, such as having just gotten a deep, dirty puncture wound, putting them at increased risk of tetanus or having been directly exposed to a child with meningococcal meningitis. In those situations, persistent parental refusal to vaccinate their child, given the increased risk, may constitute medical neglect.

The public health issues are also important, given that each unvaccinated child decreases the percentage of the vaccinated population and puts all at risk by decreasing the herd immunity effect. This may be especially important in the instance of an epidemic. This may constitute a situation in which the parental objections should be overridden in the interests of public health and safety. The recent measles outbreak in the upper Midwest is one example of this, especially given the high rates of morbidity from measles. Fortunately, most cases of refusal to vaccinate do not arise in the face of a high public health risk, so the issue can be revisited at subsequent visits and further information can be shared with the families. The mutual trust required for optimal care suggests not only that physicians should respect the family's decision but also that families should respect their doctor's need to discuss this issue again at subsequent visits.

The role of institutional ethics committees

On occasion, complex ethical issues arise regarding the care of a child. Obtaining consultation from an institutional ethics committee is one way to allow parties who are uncomfortable with making the decisions that need to be made or parties who are involved in a dispute about decisions regarding the care of a child to get a second hearing from a noninvolved party. The disputes may occur between health professionals, between parents or adults involved in the child's care, or between the health professionals and the parents or legal guardians. The institutional ethics committee can also take on the roles of drafting and reviewing institutional policies regarding ethical care of patients and educating health care professionals, patients, and their families about various ethical issues involved in health care. Details about these committees and guidelines for their operation are described in detail in an AAP policy statement on this topic published in 2001 and reaffirmed in 2004.

Ethics of consent and assent in child involvement in clinical research

The issue of consent from adults on behalf of a child's participation in research and of assent by the child is under renewed discussion. This re-examination comes partially from the new push to evaluate drug treatments specifically in children and to not assume that children respond to pharmacological interventions like miniature adults. In 1977, The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research recommended that active assent be required for research in all children older than 7 years. This report also stated that the child's objection to the research could be overridden in cases of likely direct benefit to the child if the benefits were available only through the research and that children need not automatically be excluded from research if they were not capable of assent.

However, many authors and researchers feel that age 7 years is too young to require assent because of the developmental limitations of a young child's understanding of research and the complex factors involved in giving assent. What information the child must be given in order to give assent is not clear. Does the information need to include the same degree of detail as the information provided for the informed consent required from the parents or legal guardians? Most agree that, at minimum, children should be given a basic overview, should be told that participation is voluntary, and should understand that they are participating in a research project, not just standard care.

Similarly, several groups have proposed that any rewards or compensation for participation in research should go directly to the child and not be given to the parents. This recommendation is designed to prevent parents from having to balance gains to themselves versus risks to their child in agreeing to their child's participation in the research.

Finally, a new focus has been made on defining more clearly when children should be asked to participate in research that does not offer them a direct benefit. Currently, the thinking is that this should occur only when the risks are very low because of the inability of children to give informed consent. Defining exactly what constitutes a low risk varies among observers. Particularly, whether some research procedures constitute a minimal risk, are clearly acceptable, or constitute a minor risk, which may not be acceptable in terms of child involvement in research, is being debated.

According to US federal regulations, a minimal risk is defined as risks that are "not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests." Some authors suggest examining risks of familiar daily activities to determine what is an acceptable minimal risk. Examples might be the risk of dying in a car accident or of getting injured playing usual childhood sports. Other options would be the risks to a child within the community in which he lives, which would vary from one community to another, or the risks of participating in typical charitable activities, since research without the likelihood of personal gain is another form of charitable activity. However, for the time being, the current standard is left at the level of minimal risk, with judgment about what minimal risk is left to the discretion of individual institutional research review boards.

Keywords

bioethics, medical ethics, parental consent, informed consent, confidentiality, Hippocratic oath, ethical behavior

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