Investigating A Family Physician's Ethical Role in Pediatric Care
A family physician's pediatric ethical challenges are examined.
By Robert H. Brandon, II, BS, CPH
Led by 1960s and 1970s consumer movements, family-centered care advocates have promoted philosophies, principles, and practices focused on informing patients about treatment options while improving access to appropriate medical information.1 Today, family-centered care continues to address the importance of the family in clinical decision making and the developmental needs of children.1
However, ethical decision-making remains difficult for pediatric providers based on the concepts of assent, informed consent by proxy, and parental permission.2,3,4 Parents and physicians should include children, adolescents, and emancipated minors when making medical decisions commensurate with their level of development.6
Child’s Role in Decision Making
Over the last 30 years, a child’s role in decision-making has changed.1,6 Traditionally, parents and physicians have shared the authority to make all treatment decisions for children as social health policy and practice evolved.1,6 As such, the American Academy of Pediatrics (AAP) suggest that clinicians should solicit a child’s assent in treatment decisions, careful not to deny their fundamental rights of individuality or diminish moral status.6
Although not all pediatric patients are able to fully comprehend all aspects of care, some are interested about their clinical situations, diagnostic testing, and treatment options.6 As such, disclosure should be culturally sensitive with suitable language and equal to a pediatric patient’s level of maturity to foster cognition, psychological, and moral development.3,5,6 While considering family-centered perspectives, family practitioners share a principal obligation as pediatric patient advocates, regardless of society or the current health care system.1,6
Health care providers are bound in seeking informed consent prior to any recommended medical intervention.1,6 However, the appropriate age of informed consent remains controversial.10 The AAP adapts this concept to pediatric cases by giving parents the authority of informed consent by proxy.4,6
Legal Considerations
This poses problems for family physicians because of ethical and legal responsibilities to pediatric patients based on medical necessity, independent of parental desires or proxy consent.6 In these cases, practitioners should seek informed consent from parents prior to medical interventions, except when parents cannot be contacted in emergencies.6 0
Whereas cultural, philosophical, and social positions regarding medical treatments are quite variable, the law grants parents discretionary authority in child rearing and welfare.2,6 Although parents and physicians will make final decisions, practitioners should seek parental permission and solicit patient assent when developmentally appropriate.4 Assent may increase patient compliance, reduce anxiety, and strengthen patient-physician relationships.
Ethic Consideration
Ethical dilemmas between parents and physicians arise when perceptions about treatment options differ.7 Decision-making can be subjective in nature when the child’s best interests are unclear.6,7 Clarification and reassurance helps patients and families understand that physicians are promoting ethical principles of beneficence and nonmaleficence at all times.7
Documenting, listening to all perspectives, and restating the issues at hand are extremely important and relevant. On occasion, delaying an acute treatment may be the best option until all of the issues have been clarified.7
Further, end-of-life care should reflect the best interests of children, respecting individuality, quality of life, and wishes.6 However, physicians should take notice when parents strongly disagree about the medical facts, risks and benefits of treatment, and harm to a child is imminent; parents should be provided with the opportunity for second opinions.6
Also, physicians should seek the assistance of an institutional ethics committee, ethics consultants, or the involvement of local child protection services as alternatives for resolution in cases where parental decisions are clearly not in a child’s best interests.6 Active and passive elements of persuasion should be used as final measures by physicians.4
Permission
The AAP recommends that physicians seek informed permission from parents of infants and young children prior to immunizations, invasive diagnostic procedures, lumbar punctures, or surgical interventions.4 These individuals do not have cognitive skills or decision making capacities and parents make decisions on their behalf.
When dealing with pre-adolescents, both patient assent and parental informed permission should be sought and based on their level of experience prior to routine venipuncture, prescribing medications, or corrective surgery.4 Strong signs of dissent should be noted and child psychologists can be sought to increase cooperation and establish trust.6
Next, family physicians should obtain informed consent from adolescents and young adults, whereas parental involvement should be encouraged. Given issues of confidentiality and privacy (ethical and legal obligations), physicians can involve parents only when given permission by adolescents age 15 and older seeking treatment for drug or alcohol abuse, pregnancy, or sexually transmitted diseases.4,8 However, disclosing the problem to the parents is ethically justified when a minor faces serious health threats.6
Other cases require parental permission or parental notification when minors have no legal entitlement to authorize life-sustaining treatment.4 However, emancipated minors can legally accept or reject interventions without parental permission. Further, a surrogate guardian can be legally appointed in cases of child abuse or diminished decision-making capacities in parents themselves.4,6
The Family Structure
Given decades of shifting family dynamics, the classic idea of the family unit has changed from traditional framework and roles.10 Given this model, the AAP reports that less than 33 percent of children live in stable two-parent families where the father only works.2
Further, 61 percent have both parents working outside of the home and another 60 percent of mothers begin working before children reach six years.2 An estimated 19.3 million families of children less than 14 years are being supervised outside of the home.2 From an ethical standpoint, these individuals may have a more mature decision-making capacity than their peers or as previously thought.
While trends indicate disintegration of the traditional family structure, it remains paramount that children should be involved in decision-making processes, since it is the child who must undergo treatment options.10 Family physicians should take into account children’s feelings and document their views in medical records when appropriate.
Children and their parents have the right to be informed and seek answers relevant to their concerns or questions.9 Clinicians must continue effectively communicating with families, providing a framework for proper decision-making, and soliciting assent that fosters emotional, physical, and social development in their pediatric patients.
Robert H. Brandon, II BS, CPH is a third year medical student at the New York College of Osteopathic Medicine and a student member of the ACOFP Ethics Committee.
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