Published on 10/06/2015 by admin
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Last modified 10/06/2015
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Chapter 6 Ethics
Anne Lyren, Benjamin S. Siegel
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.
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.
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.
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.
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.
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.
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