Ethics

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Chapter 6 Ethics

Pediatric ethics analyzes the moral aspects of decisions made in the health care of children. An ethical problem exists when there is a difference in values among the people who are involved with a medical decision. Traditional medical training emphasizes the pathophysiology of disease and answers the clinician’s question, “What can I do?” Ethics addresses the equally important question, “What should I do?” Ethics is different from the law. Legal decision analysis is based on written legislation and legal precedent. The law answers the questions: “What must I do?” or “What may I do?” Ethics, on the other hand, involves breaking down a problem into its fundamental parts, examining the values and assumptions at hand, and determining the best course of action. Every decision in pediatrics has an ethical component, and attention to these issues is essential for optimal patient care.

CONSENT

Who Should Make Medical Decisions for Children?

Decision making for children is a unique and challenging process. Adult patients 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. The ultimate goal should be to identify the child’s best interest through a shared decision-making process that involves the clinician, patient, and parents. This process invokes the ethical principle of beneficence, which urges caregivers to identify and act according to the best interest of that particular child. The clinician provides a thorough understanding of the available medical evidence and can make recommendations based on clinical knowledge and experience. The parents bring their intimate knowledge of the child and the family. The child is represented by the parents who, as the primary caregivers, 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 the tenets of informed consent apply to informed permission, except that parents ultimately make the decision instead of the child patient. Children gradually develop the ability to understand a diagnosis and treatment plan as they approach adolescence. Hence, the older child’s ideas and opinions deserve serious consideration and can be quite enlightening in the effort to identify the child’s best interest. Although older children are legally unable to give informed consent, they may still express assent and dissent that empower 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 child patient gives assent to interventions in his or her best interest.

CONFIDENTIALITY

What Does the Duty of Confidentiality Require in Pediatrics?

As adolescents mature from childhood to adulthood, the physician can be a unique and important advocate. 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 challenging health issues. Physicians should respect and encourage a mature approach to health by adolescents but must be careful not to construct additional barriers for this patient population that historically has not appropriately accessed health care. Issues of confidentiality arise often within the physician/patient/parent triad, and management can be quite delicate in terms of the limits of confidentiality and the circumstances in which disclosure must occur. Although the specifics vary from state to state, the law sometimes gives an adolescent who demonstrates some degree of maturity the discretion to make healthcare decisions without the involvement of parents. This decision making relates to issues such as substance abuse, sexually transmitted diseases, pregnancy, contraception, and mental health. In some states, subgroups of adolescents, variously known as emancipated minors, mature minors, or medically emancipated minors, are considered capable of providing informed consent (based on their developmental capacity but usually 14 years or older) for all forms of care by virtue of their life experiences, which may include financial independence, being in the armed services, being declared independent by the court, pregnancy, homelessness, or marriage. Because statutes governing adolescents vary from state to state, physicians should research the laws in their practice communities. In all cases, the primary duty of the physician is to optimize the adolescent patient’s care by advocating for his or her best interest.

What Are the Limits of Confidentiality in the Adolescent-Physician Relationship?

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. Through a confidential relationship, the physician demonstrates respect for the patient’s privacy while facilitating care. 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. Serious concerns that threaten the life and health of the adolescent, including suicidal ideation, significant substance use that impairs the adolescent’s functioning, the potential for community violence, and sexual or physical abuse, will limit confidentiality. If the life of the patient or anyone else is in peril or the patient is being abused by parents or caretakers, the physician is mandated both ethically and legally to disclose this information to the appropriate authorities. Perhaps one of the most important roles of the physician is to facilitate communication between the adolescent and the parents, who can be important sources of support and advocacy. Under most circumstances, the adolescent should be encouraged to involve the parents in his or her health care because they ideally can provide support and help the adolescent identify his or her best interest. The physician should also encourage the parents to appreciate and embrace the adolescent’s emerging maturity and independence. Confidentiality in the physician-adolescent patient relationship is key to the physician’s effort to be a confidante and caregiver, ultimately acting in the best interest of the patient.

GENETIC TESTING IN CHILDREN

Under What Circumstances Should Genetic Testing of Children Be Performed?

The decision to use genetic testing for children is generally more complex than for other tests because the results have implications for family members as well as the child. Certain genetic diagnoses may subject children and their families to financial, psychological, or interpersonal prejudices that are not easily foreseeable. Genetic testing offers the possibility of great information, but it runs the risk of assuming genetic determinism—exaggerating the genetic influences on disease while devaluing the environmental ones. The decision to undertake a genetic evaluation should be based on the principle of beneficence with the best interest of the child as the guide.

Isn’t Newborn Screening a Form of Genetic Testing? Why Is It So Widely Accepted?

Every state requires that newborn infants undergo screening to detect a number of metabolic and inherited conditions that can threaten the health and well-being of the child. The screening procedure reflects society’s obligation to optimize the health of children by detecting and treating particular infant or early childhood conditions. Theoretically, each of these screening tests is carefully chosen to satisfy a number of criteria. First, the test must be highly sensitive so that cases are adequately identified among the masses of screened newborns. At the same time, the specificity should be as high as possible to avoid the anxiety that comes from a false-positive test. The screening tests must be carried out for the entire population of newborns to ensure detection of all cases. Effective preventive or treatment interventions must be available and must 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.

What about Screening Tests for Genetic Diseases of Adulthood?

Huntington’s disease, breast cancer, and polycystic kidney disease are just a few of the adult diseases for which genetic tests are available and can be performed in childhood or even in utero. The list of diseases now known to have a genetic link is rapidly increasing in number and variety. Theoretically, identifying a predilection to such disease may lead to preemptive intervention to decrease the morbidity and mortality of the disease, but knowledge of a genetic predilection has not proved to have an impact on the future health of the patient. Physicians faced with requests for this type of 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 challenging. By definition, these tests detect diseases of adulthood; therefore if intervention during childhood cannot successfully and significantly alter the natural history of the disease, the testing will not be in the best interest of the child. Testing should be deferred until the child reaches late adolescence or adulthood and can make his or her own autonomous choice. Physicians faced with requests for genetic testing should keep all of these issues in mind when determining if genetic testing is in the best interest of the child.

END-OF-LIFE ISSUES

IMMUNIZATION AS A BENEFIT TO SOCIETY

How Should I Explain to Parents the Recommendation to Immunize Children?

Parents often question the need for immunizations. To address their concerns, you must know the risks and benefits of immunizations so that you can identify the best interest of the child. Immunizations are generally intramuscular injections and are always painful, and the current immunization schedule recommends that an infant or child receive as many as four or five injections at one visit. Each immunization has established side effects, and parents need to be aware of them. The list of available immunizations continues to change and grow and so do recent claims about vague associations between them and diseases of unclear etiology. Such claims have not been substantiated by careful medical research, yet the theories are still widely publicized and accessible. Providing parents with reliable information sources can help.

Parents may be hesitant to immunize their children against diseases such as measles and polio when the child’s risk of contracting the disease is exceedingly low in the United States. These diseases are currently uncommon because of the effectiveness of immunizations. In past decades, however, these diseases affected thousands of American children and still today overwhelm many in underprivileged societies. Some countries, 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 immunization protects the population as a whole and is likely the reason for the low prevalence of these devastating diseases in the United States.

We live in a world in which travel is fairly easy. Transient and immigrant individuals from countries with different disease risks and immunization practices enter the United States and potentially may expose others to disease. Despite this, parents may argue that immunization is not in the child’s best interest because our society has a relatively low prevalence of disease. They argue that their child should not be subjected to the pain, side effects, and inconvenience of immunization to protect the society at large. Some parents may claim a religious/spiritual or philosophical exemption to immunization. Whereas all states allow certain medical exemptions approved by a physician, the laws regarding exemptions based on parental philosophical and religious/spiritual beliefs vary by state. Physicians should familiarize themselves with state laws.

The American medical profession continues to recommend routine immunization. The ethical justification for this position is based on a comprehensive view of the child’s best interest that includes consideration of the principle of justice for all members of society. Just as there are limits to confidentiality, there are limits to pursuing the best interests of the individual. 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 refusing immunizations, parents put their own children at only a small individual risk of disease but potentially increase the risk to the entire population if the number of unimmunized children grows. Justice challenges the absolute sovereignty of the best-interest paradigm by suggesting that the best interest of the child must be balanced by the needs of society, particularly when an action, or in this case inaction, carries little risk to the child but puts the society in peril. The child has the potential to benefit directly from the immunization, which also contributes to a safer society. These benefits outweigh the individual risk to the child.

Optimal care for children goes beyond addressing the needs and interests of individual patients. Through political advocacy and increased public awareness, healthcare providers can address the welfare of all children. In a disease epidemic, the public health departments of some states have the legal power to mandate immunization administration to all susceptible children as a protection of the public health.

KEY POINTS

♦ Every decision in the care of children has an ethical component.

♦ Most pediatric patients cannot give informed consent; parents and legal guardians give informed permission.

♦ Children should contribute to their own medical decision making to the extent they are developmentally capable as part of the process of assent/dissent.

♦ Confidentiality is key to all clinical encounters, but it is especially important with adolescents.

♦ Genetic testing in pediatrics requires careful consideration.

♦ The child’s best interest must guide decisions at the end of life.

Case 6-1 Grandparents bring a 6-year-old child to the office for pre-kindergarten immunizations and a routine health supervision visit. The child is staying with them while the parents are undergoing a divorce. They do not have a signed release (healthcare power of attorney) from the parents.

A Can you examine this child and give immunizations?

B What if this visit were for an emergent medical condition? Would you be able to manage the child?

Case 6-2 A 16-year-old adolescent requested to speak with you in private about health issues. He has a sexually transmitted disease. You discuss this health issue with him and determine that he has the developmental capacity to understand the nature of his condition, the recommended treatment, and alternatives. After the appointment, his parents demand that you tell them what you have just discussed with their son.

A How would you reply to the parents’ request?

B Does the adolescent have a legal right to seek confidential health care?

Case 6-3 The mother of a 2-month-old infant refuses immunizations because she is afraid that immunizations will “overload” her baby’s immune system.

A Does this mother have the legal right to refuse immunizations? What is the ethical (and medical) concern?

B What is the most reasonable approach on your part to this issue?

Case 6-4 The maternal grandmother of a 3-year-old girl was recently diagnosed with Huntington’s disease. The mother of the child is currently undergoing genetic testing for this disease and would like you to test her daughter for the disease as well.

How do ethical principles guide your decision in this case?

Case 6-5 Despite intensive medical efforts, a 12-year-old boy is dying of cancer. His parents and care providers meet and determine that his goals of care should change from aggressive attempts to cure to providing palliative care. His parents state that they do not want anyone to tell the child that he is dying.

A Is it acceptable to provide palliative care instead of cure-oriented care to this boy without his knowledge?

B How would you manage this situation?

Case Answers

6-1 A Learning objective:

Understand the legal and ethical basics of consent.

The ethical question in this case would be whether well-child care and immunizations are in the best interest of the child, which is not apparently a point of significant controversy in this situation. This case largely addresses the legal issues regarding consent to treat children. Strictly speaking, you may not even examine the child because the child’s legal caregiver (the child’s parent) has not given consent to your care. More importantly, you may not perform invasive procedures such as immunizations because the grandparents do not have the legal right to make the decision in place of the parents. If you can contact the parents and obtain a witnessed authorization by telephone or fax, then immunizations may be given.

6-1 B Learning objective:

Recognize that in an emergency situation a physician may provide care without consent of parents or legal guardians.

Yes, in an emergency, a physician may treat a child without parental consent.

6-2 A Learning objective:

Discuss the issue of confidentiality as applied to adolescents.

Inform the parents that their son is your patient and that you are guided and bound by rules of confidentiality except when the adolescent or another is at imminent risk of serious harm, such as cases of suicidality or homicidality. Encourage them to speak with their son, and encourage the boy to speak with his parents.

6-2 B Learning objective:

Recognize the medical conditions for which a minor may seek confidential health care.

Yes, federal and state laws exist that offer specific provisions for adolescents seeking confidential care for some medical conditions. Sexually transmitted diseases are among the conditions for which a minor may seek confidential care. Others include substance abuse, pregnancy, contraception, and certain mental health conditions. Physicians must be aware of the confidentiality laws in the area in which they practice.

6-3 A Learning objective:

Understand the conflict between personal choice and justice as applied to medical decisions.

Yes, the mother has the legal right to refuse immunizations. She puts her infant at risk and also increases the risk to society. In addition, her choice may conflict with laws regarding immunization status for children in school.

6-3 B Learning objective:

Counsel families about the benefits of immunizations, both for the individual child and the larger society.

Withhold immunizations at this visit. Discuss the mother’s concerns, and provide her with information from reliable sources. Continue to offer immunizations, and discuss the facts about immunizations at each visit. Also provide guidance about illness prevention for this unimmunized infant. Remind the mother that public school systems and most day-care programs require immunizations or evidence of an exemption in accordance with state laws.

6-4 Learning objective:

Understand the role of beneficence in making all medical decisions for children.

Beneficence instructs you to think carefully about the best interest of the child in this circumstance and not be influenced by her mother’s interest. No clear evidence exists to support the assertion that the child benefits now from the knowledge that she has a disease of adult-onset for which there is currently no treatment during the latent phase. In fact, some evidence suggests that this information may make her more vulnerable to discrimination, bias, and psychological injury. Adults who are faced with the decision of whether to be tested for such diseases decide variably—some wish to have the information; others prefer not to know. Beyond satisfying her mother’s desire to know, there is no reason to test the child at this time. Such testing is better left until the time at which the girl reaches the age at which she has the developmental capacity to understand the complex implications of the testing and can decide for herself whether she wants to know.

6-5 A Learning objective:

Allow children to provide assent to their care and be involved to the extent that they are developmentally capable.

Although this child may not have reached an age at which he is ethically or legally able to consent to his care, his physicians have a duty to include him in discussions and decisions about his medical care to the extent he is able. Most 12-year-olds have a very good understanding of treatment goals and are able to provide meaningful assent or dissent. Not including him in this fundamental change of plans does not respect the important role he plays in his own life and risks not being truthful. Chances are this child would sense the change in plan even if no one told him. He may have worries, questions, or concerns he is reluctant to share but could be easily addressed. In addition, failing to tell him that he is dying deprives him of potential opportunities to shape the end of his life.

6-5 B Learning objective:

Use multidisciplinary services at the end of life to enhance the experience of the patient and family.

Identifying the motivations for the parents’ secrecy can be helpful in deciding how to approach this delicate situation. Most often, the parents are overwhelmed by sadness and do not wish to burden the child further with additional bad news. Furthermore, they may not know how to talk to their child about these issues or what hope or choices they can offer him. At these critical times, physicians must use the services of others who are specifically trained to address the needs of patients and families at the end of life. These include social workers, child-life therapists, art and music therapists, clergy, and hospice specialists.

BIBLIOGRAPHY

American Academy of Pediatrics, Committee of Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95:314.

American Academy of Pediatrics, Committee on Bioethics. Responding to parental refusals of immunization of children. Pediatrics. 2005;115:1428.

American Academy of Pediatrics, Committee on Bioethics. Ethical issues with genetic testing in pediatrics. Pediatrics. 2001;107:1451.

American Academy of Pediatrics, Committee on Medical Liability. Consent by proxy for nonurgent pediatric care. Pediatrics. 2003;112:1185.

Himelstein BP, et al. Pediatric palliative care. N Engl J Med. 2004;350:1752.

Society for Adolescent Medicine. Confidential health care for adolescents: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2004;35:150.

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