Pediatrics, Overview of Ethical Issues in
PEDIATRICS, OVERVIEW OF ETHICAL ISSUES IN•••
Pediatric ethics is a branch of bioethics that analyzes moral aspects of decisions made relating to the healthcare of children. Several matters distinguish pediatric from adult ethics, including issues of consent, confidentiality, genetic testing, end-of-life care, and justice.
Consent: Making Medical Decisions for Children
Decision making for children is a unique and challenging process. Adults generally make their own medical decisions through the process of informed consent, in which a competent adult capable of sufficient understanding is given adequate, clear information about the proposed intervention and granted the autonomy to make choices. Most children have not reached the developmental stage at which they can ethically or legally give informed consent. To further complicate matters, many parties may be involved in the decision-making process, including the patient, parents, family members, nurses, doctors, social workers, clergy, and the courts.
Beneficence is the foundation of decision making for children. This principle encourages identification of the child's best interest through a shared decision-making process involving the clinician, patient, and parents. Each member of this triad brings information that helps identify the child's best interest. The clinician provides a thorough understanding of the available medical evidence regarding the condition along with a repertoire of clinical knowledge and experience. The parents bring their intimate familiarity with the child and the family. As the child's primary caregivers, parents give informed consent by proxy (otherwise known as "informed permission") because they are usually best able to determine the child's best interest. Physicians have the responsibility to ensure that parental motivations are based on the child's needs rather than the parents' wishes. All of the tenets of informed consent apply to informed permission; however, the adult parents are the ones who ultimately make the decision instead of the child patient.
Children gradually develop the ability to understand a diagnosis and treatment plan as they approach adulthood. Hence, the older child's opinions deserve serious consideration and can be quite enlightening in the effort to identify the child's best interest. Although these older children may be legally unable to give informed consent, they may still express assent, which empowers them to the extent of their developmental abilities. Thus, the ideal decision-making scenario is a shared process: The physician provides information and recommendations, the parents give informed permission, and the patient gives assent to interventions in her best interest.
Confidentiality: Adolescent Issues
As part of the process of individuation, adolescents desire more privacy in their personal lives. At the same time, they are encountering increasingly complex and dangerous health issues. Not infrequently, issues of confidentiality arise within the physician/patient/parent triad, and management can be quite delicate in terms of the limits of confidentiality and the circumstances under which disclosure must occur. Although the specifics vary from state to state, the legal community gives adolescents who demonstrate some degree of maturity the discretion to make healthcare decisions for themselves and without the involvement of their parents regarding issues such as substance abuse, sexually transmitted diseases, pregnancy, contraception, and mental health. Variously known as emancipated minors, mature minors, or medically emancipated minors, some subgroups of adolescents are considered capable of providing informed consent for all forms of care by virtue of their life experiences, which may include financial independence, pregnancy, homelessness, or marriage. Because statutes governing adolescents vary, physicians should become familiar with the laws in their communities. In all cases, the primary duty of the physician is to optimize the adolescent's care by advocating for his best interest.
LIMITS OF CONFIDENTIALITY. All clinical interactions are by nature confidential. Because the adolescent is the patient, in most instances he or she must give permission to share information with parents or others. At the outset, the physician should establish an independent relationship with the adolescent, explaining to the patient and the parents both the breadth and the limits of confidentiality. In the event that the life of the patient or anyone else is in peril or the patient is being abused, the physician is mandated both ethically and legally to disclose this information to appropriate authorities. A critical role of the physician is to facilitate communication between the adolescent patient and the parents. Under most circumstances, the adolescent should be encouraged to involve the parents in her healthcare because they can ideally provide support on a continual basis. Conversely, the physician should also encourage the parents to embrace the adolescent's emerging sense of independence. Confidentiality in the physician–adolescent patient relationship must be a priority in the physician's effort to be a confidant and caregiver and to ultimately act in the patient's best interest.
Genetic Testing in Children
Genetic testing in children is generally more complex than other pediatric testing because the results have implications for other family members as well. Patients with certain genetic diagnoses, and their families, may suffer financial, psychological, or interpersonal prejudices that are not easily foreseeable. In spite of the awesome wealth of information the human genome can supply, both nature and nurture influence the health outcomes of any given person; and this form of testing runs the risk of assuming genetic determinism—exaggerating the genetic influences while devaluing the environmental ones. Deciding when to undertake a genetic evaluation in pediatrics can be a challenge. As with other medical decisions for children, physicians should use beneficence as their guide.
NEWBORN GENETIC SCREENING. Every state requires that newborns undergo screening to detect a number of metabolic and inherited conditions that can threaten the health of the child. The screening procedure reflects society's obligation to optimize health by detecting and treating particular infant or early childhood conditions. Theoretically, screening tests are carefully chosen to satisfy a number of criteria. Tests must be sensitive enough to identify cases among masses of screened newborns, specific enough to avoid the anxiety that comes from a multitude of falsely positive tests, and widely available. In addition, effective preventive or treatment interventions must be available that significantly alter the morbidity and mortality of the condition. Perhaps the most important criterion is that the test must provide a clear benefit for the child.
SCREENING CHILDREN FOR GENETIC DISEASES OF ADULTHOOD. Huntington's disease, breast cancer, and polycystic kidney disease are just a few of the exploding number of adult diseases for which genetic tests are available and can be performed in childhood or even in utero. Theoretically, identifying a predilection to such disease may lead to preemptive intervention to decrease the morbidity and mortality of the disease; but this supposition has not been confirmed in practice. Physicians faced with requests for this type of pediatric testing must proceed with great caution. The psychological and social impact of this information can be much greater than anticipated and may lead to discrimination by employers, insurers, and others. Performing these tests while remaining committed to the child's best interests can be troublesome. By definition, these tests detect diseases of adulthood; so if there is no intervention during childhood that can significantly alter the natural history of the disease, the testing may not be in the child's best interest. The testing may best be deferred until the child reaches adulthood and can make his own autonomous choice. Physicians faced with requests for genetic testing should keep all of these issues in mind when determining if testing is in the best interests of the child.
Caring for dying children is one of the most challenging responsibilities in pediatrics. The emotions engendered by anticipation of a child's death have a powerful impact on families and caregivers and may sometimes be an obstacle to the appropriate care of the child. Again, beneficence must guide any decisions at the end of life. Through a shared decision-making process, the clinician should obtain informed permission from the parents as well as patient assent, when possible, to optimize these interests. Careful, continual evaluation is critical so that when the burdens of treatment outweigh the benefits, the treatment plan can be appropriately modified.
WITHHOLDING AND WITHDRAWING SUPPORT. Clinicians and families often struggle at the point when they realize that neither the current interventions nor additional ones will alter the child's progression toward death. The inevitability of death then challenges the family and the healthcare team to change the goals from cure to palliation. Parents often fear that they would be taking an active role in hastening death by withholding or withdrawing support. Physicians must be prepared to help the family understand that palliation is not equivalent to giving up but instead part of the continuum of respect and consideration for the child. Parents and clinicians may feel that withholding support is somehow preferable to withdrawing support already in place. This distinction between not initiating an intervention and removal of an intervention is not ethically meaningful. Viewed in light of the changing goals of treatment and the child's best interest, either can be ethically sound.
Justice: The Example of Childhood Immunizations
The issue of immunizing infants and children highlights the role of justice in pediatric ethics. Parents frequently question the need for the immunizations recommended for their children. To address their concerns, the physician must know the risks and benefits of immunizations in order to identify the best interest of the child. Immunizations are generally intramuscular, painful injections; and the current immunization schedule recommends that the patient receive as many as four or five injections during one visit. Each vaccination has established side effects, and parents need to be aware of these. The list of available immunizations continues to change and grow and so do recent claims about vague associations between these vaccinations and diseases of unclear origin. Such claims have not been substantiated by careful medical research, yet the theories are still widely publicized and accessible.
Parents may be hesitant to immunize their children against diseases such as diphtheria and polio when the child's risk of contracting the disease is exceedingly low in the United States. Because of vaccine effectiveness, these diseases are currently uncommon. In past decades, however, these diseases affected thousands of American children and still overwhelm many in underprivileged societies. Countries such as Russia, whose established immunization programs have been compromised by political strife, are now experiencing epidemics of diseases that were previously under control. These events reinforce the idea that widespread vaccination confers immunity to the population as a whole and is likely the reason for the low prevalence of these devastating diseases in the United States. Nonetheless, humans live in a world community. Travel around the world is fairly easy, and transient and immigrant populations with different histories of disease exposure live throughout the United States.
Still, parents may argue that in a society with relatively low disease prevalence, their child should not be subjected to the pain, side effects, and inconvenience of immunization in order to protect the society at large; therefore, immunization is not in the child's best interest. Yet the American medical community continues to recommend routine vaccine administration. The ethical justification for this position requires a more comprehensive view of a child's best interest and includes consideration of the principle of justice. Just as there are limits to confidentiality, there are limits to pursuing the individual child's best interests. In the case of immunizations, justice imposes such a limitation. Broadly speaking, the principle of justice suggests that all members of a society must bear both the burdens and the benefits of coexistence. By not immunizing their children, parents may put their own children at only a small individual risk. But if the numbers of unimmunized American children grow, the entire population is at increased risk. Justice challenges the absolute sovereignty of the beneficence paradigm by suggesting that the child's best interest may be balanced by the needs of society, particularly when a particular action, or in this case inaction, puts the society in peril. In the case of immunizations, the child has the potential to benefit directly and also contributes to a safer society. These benefits out-weigh the individual risk to the child. Optimal care for children goes beyond addressing the needs and interests of individual patients.
eric d. kodish
SEE ALSO: Autonomy; Beneficence; Care; Children; Competence; Confidentiality; Family and Family Medicine; Infants; Informed Consent; Research Policy: Risk and Vulnerable Groups; Surrogate Decision Making
American Academy of Pediatrics Committee on Bioethics. 1996. "Ethics and the Care of Critically Ill Infants and Children." Pediatrics 98: 149–152.
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Nelson, L. J.; et al. 1992. "Ethics and the Provision of Futile, Harmful or Burdensome Treatment to Children." Critical Care Medicine 20: 427–433.
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