Chapter 151: Ethical Considerations

• Physicians, parents, patients, and guardians share a common goal to protect the health and well-being of the child. In the event of a disagreement, every effort must be made to resolve conflicts to assure the best possible outcome for the child.

• Informed consent is the appropriate term for the process of reaching an agreement about medical care between a physician and a patient with full decision-making capacity and legal empowerment.

• Informed permission is the preferred term when a parent makes decisions for a patient lacking decision-making capacity or legal majority.

• Assent (or permission) of the patient is very important and should be sought whenever possible.

• Treatment for an emergency medical condition should never be delayed if a patient is unable to provide informed consent or a parent or guardian is not present to provide permission.

• Despite a long history in medical education, practicing procedures on the newly dead is problematic. It should only be done with fully informed permission from a parent or guardian.

Medical ethics is a philosophical discipline that guides medical practitioners to act in the best interests of patients. Ethical conflicts may arise if there are differences of opinion about what those best interests might be. Many different approaches have been explored in detail, and many emergency medicine practitioners approach the discipline from different philosophical, moral, or religious viewpoints.^1,2

Emergency physicians (EPs) are responsible for providing medical care in an increasing fiscally and ethically challenging environment. Emergency care is provided to anyone in need, regardless of immigration status or ability to pay. Emergency departments (EDs) are the only places in the United States where all patients are guaranteed medical care, serving as an essential medical safety net.³ This fundamental dedication to provide care to those most in need or with no other healthcare options is a core ethical value of emergency medicine.^2,4

In the practice of pediatric emergency medicine, patients, parents, guardians, and physicians generally have a common goal: to act in the best interests of the child. The physician has an obligation to diagnose and treat illness, alleviate discomfort, and provide for the quickest and most complete recovery possible. With effective communication, an agreement can usually be reached between the physician, patient and family and a diagnostic, therapeutic, and follow-up plan can be implemented. Rarely, conflicts arise that if unresolved could jeopardize the health and well-being of the child. Significant effort may be required for resolution to provide for the best possible outcome for the child from each party's perspective.

An EP needs to be familiar with current recommendations, policy statements, principles, and controversies that guide the practice of emergency medicine, as well as the same concepts as they apply to the care of children. This section will focus on the ethical considerations at the intersection of emergency and pediatric medicine.

Triage and Overcrowding

Pediatric patients make about 30 million visits to EDs in the United States each year, accounting for about 25% of all ED visits.³ Ninety-two percent of these visits are to general community EDs. Although overcrowding of EDs is difficult to define, a reasonable definition is when the need for medical services exceeds available resources. More than 90% of academic EDs are overcrowded and 30% to 40% of emergency medicine directors report daily overcrowding.⁵

When resources are limited, a compelling policy might be to triage less severely ill patients away from the ED to other healthcare resources in the community. In one trial of adult patients, 19% of patients met low-acuity criteria and were referred to a “help desk” for information about community resources. Unfortunately, the majority of the patients in the study either did not go to the “help desk” or did not seek further care. Application of the same low-acuity criteria to other sets of patients presenting for care have shown that a large proportion meeting low-risk criteria were actually thought to be appropriate for an ED visit, and a fair number were hospitalized.⁶ Pediatric-specific triage protocols should be utilized at all EDs, but no triage protocol has been demonstrated to be ideal. Since differences do exist between medical professionals' assessment of illness severity,⁷ every effort must be made to provide care to all children presenting to an ED. It is a good practice to develop systems within the department and institution to provide care for lower-acuity patients and to triage such patients to this area. In the event of an inappropriate triage, the patient can be retriaged to the area providing a higher level of care. It might be appropriate to arrange an immediate appointment and transportation to another off-site clinical area, but only if it were in the child's best interests and if it would provide equal or better care than available in the ED.⁶ As no triage system or protocol has demonstrated adequate sensitivity to identify all children requiring treatment, no child should be turned away or denied care based on an initial low-acuity triage assessment.⁸

Medically Underserved Children

Poor children often do not have access to outpatient medical care. Many of the challenges they face make consistent and comprehensive medical care difficult if not impossible.⁹ They have higher rates of under-immunization, acute illnesses, asthma, injury, malnutrition, and mental health issues than the general population.¹⁰ In addition to the problems associated with poverty, there may be significant cultural and linguistic barriers to obtaining effective care.⁹ The Emergency Medicaid program was established in 1986 and provides coverage for uninsured documented and undocumented children with an emergency medical condition. Eligibility and benefits are set by the individual states.¹¹ These vulnerable children require not only excellent medical care, but need to be connected to any federal, state, and community resources to help them access the Emergency Medicaid program and other services to support their overall health and well-being.⁹ Care should be provided for the presenting complaints and whenever possible a referral should be made to an accessible source of ongoing primary care in the community.¹⁰ Policies requiring reporting of undocumented immigrants may deter them from seeking health care.¹¹ The American College of Emergency Physicians opposes federal and state initiatives which would require refusal of care to undocumented persons or reporting suspected undocumented persons to authorities.¹²

Child Abuse

When treating a patient who may have been abused, the physician must hold the best interests of the patient as the primary focus of the evaluation. The treating physician needs to explain the process of investigation to the parent, assuring that they are dedicated to the child's well-being, but also explaining the legal mandate to report a suspected abusive situation to the local child protection agency for investigation and protection of the child. In the event that a parent does not seem to be acting in the child's best interests, a court proceeding to establish a guardian for medical decision making should be pursued.¹³

Informed Consent, Parental Permission, and Assent

The informed consent process is an ethical cornerstone of providing care to patients as it balances the physician's desire to do what is best from a medical and scientific perspective with the patient's right to comprehensive information to decide what is best from their personal perspective. Informed consent is the appropriate term used for patients with full decision-making capacity and legal empowerment, and is the term commonly used when parents make decisions for their children. The American Academy of Pediatrics recommends the use of different terminology to clarify the unique interrelationships in the process of providing care to children. Informed permission is the preferred term when a parent or other surrogate makes decisions for a patient lacking decision-making capacity. Assent (or agreement) of a patient lacking legal decision-making capacity is also very important and should be sought whenever possible and appropriate.¹⁴ Professional interpreters should be used whenever a language barrier exists to assure that the informed consent process is thorough and legitimate.¹⁵

In an emergency, a societal standard of presumed or implied consent exists that allows medical treatment to prevent harm based on the assumption that a person in danger would want to be saved. This standard applies if a patient is unconscious or seems to consent by cooperating with treatment. This same implied consent applies to the provision of care to a child in an emergency. Treatment for an emergency medical condition should never be delayed if a patient or parent/guardian is unable to provide consent/permission.^2,8

The process of obtaining parental permission and patient assent for nonemergent care is more complicated than the process of obtaining informed consent from an adult. The child's perspective needs to be considered and balanced with the perspective of the parent, the child's physicians, and societal standards of child welfare.^1,8,14 We struggle with these issues as we recognize that usually (but not always) parents are strong and loving advocates for what they believe to be best for their children. But children also have rights,¹⁶ independent of their parents, and physicians must try to do anything they can to assure the best outcome for the child. In addition, children have a developing and evolving decision-making capacity that is dependent on psychological, emotional, and intellectual development and maturity. Children should therefore participate in decision making as appropriate for their developmental status.¹⁴

An adult patient with appropriate decision-making capacity can provide consent for care, and the generally accepted legal age of majority is 18 years.¹⁷ Adolescents have a unique status, more like an adult than a child. State statues reflect this and define the conditions for which adolescents may seek confidential and independent health care, including sexually transmitted infections, pregnancy, psychiatric complaints, and substance abuse problems. Minors may also be legally “emancipated” or “mature” and able to consent for their own health care if they meet one of several conditions defined by the state indicating independence; including marriage, pregnancy, parenthood, military service, or living with financial independence.^17,18 Adolescents 14 years and older have been shown to be able to make informed healthcare decisions as well as adults; ¹⁴ so for conditions not covered by statute, a “mature minor” approach allows low-risk, high-benefit treatments to be provided if the physician believes that the minor is as capable to consent for the treatment as an adult.^14,18,19

Parental and Patient Refusal

An adult patient with decision-making capacity may refuse medical treatment.^2,14 Refusal of recommended diagnostic testing and treatment for children is more problematic. In almost every circumstance, the child, the child's parents, and the child's physicians have an aligned goal in assuring the child's best interests, but there may be disagreement about what those interests might be.^14,15,19 A parent refusing an invasive painful diagnostic procedure may believe that they are acting in the best interests of the child (and the child may very well agree.) Such a conflict can arise during the evaluation of a common complaint in a well-appearing child with a symptom that suggests the possibility of a very serious disease, such as a fever in a neonate. Physicians consider painful and invasive tests to be routine, but they are often anything but routine from the perspective of the child and the parent. It is unusual for parents to refuse any testing at all, but sometimes they are more concerned about a particular test, such as a lumbar puncture or a urethral catheterization. In the event that a parent refuses a diagnostic test, the physician needs to review the remaining options and make therapeutic decisions based on the available data in a similar manner to what must be done if a test is attempted but not successful. Therapy for a potentially dangerous or progressive condition should not be delayed or forgone for lack of a complete diagnostic evaluation.¹⁴

Providing emergency care to children requires a delicate balance of obtaining parental permission and the assent of the patient for care, while at the same time acknowledging the societal mandate that in a life-threatening situation the parent and patient cannot refuse life-saving therapy.^14,15 Language barriers as well as cultural and spiritual beliefs and practices may complicate the process.¹⁵ The most commonly discussed example is a child of the Jehovah's Witness faith needing a blood transfusion. The child's physical health and welfare should supercede the family's religious and spiritual concerns. Courts have consistently ruled to allow transfusion over the objections of the family.^15,20–22 In the case of an exsanguinating injury, the child should be transfused. If the child can be stabilized but is likely to need a transfusion in the near future, the local child protection agency should be involved and a judicial order mandating transfusion should be obtained. Only as a last resort should the child be taken from the parents' custody.¹⁵ Adolescent refusal of care is more complicated. It is reasonable to respect an adolescent's refusal of care that would not subject them to a great risk of harm.²³

Practicing Procedures on the Newly Dead

Teaching and practicing procedures on the newly dead has a long history in medicine. It is practiced in about half of emergency medicine training programs. The most common procedure practiced is endotracheal intubation. More invasive procedures are practiced, but less frequently. The consent or permission of a family member is rarely obtained.^13,24,25

Compelling justifications can be made. It is argued that practicing the procedure is an invaluable learning experience for the trainee and no harm can be inflicted on a corpse. A novice could practice an invasive but not disfiguring procedure a few times on a newly dead body to be better at the procedure and to better serve the next living patient.²⁵ A more problematic practice is to adopt a pretense of therapeutic intent before pronouncing a patient dead to practice more invasive procedures that have no hope of benefiting the patient.²⁶

Even if practicing procedures on the newly dead is an excellent way for a medical trainee to learn and many others will benefit from the physician's procedural skill in the future, it should only be done with permission from a parent. Such a conversation would be extremely difficult to have in such an emotionally charged situation, similar to the other difficult discussions that must occur near the end of life, including withdrawal of life support and organ donation. If teaching procedures on the newly dead is to be done, the teaching institution and program should have a policy covering this practice. Only those trainees requiring the skill should practice, and only after mastering the procedure on artificial models or donated cadavers. Only nonmutilating procedures should be performed and permission must be obtained in keeping with our standards of parental permission. Most families will agree to allow procedures to be practiced, but they want to be asked.^25–27

Chaperones and Physical Examination

A problem-focused physical examination of an adolescent may often be performed without discomfort or embarrassment of the patient. When a breast, anorectal, genital, or pelvic examination is indicated, the examination should be clearly explained. The patient, parent, or physician may want to have a chaperone present for the more sensitive parts of the examination. The presence of the third party may protect the interests of both the patient and physician.²⁸

Although teen birth rates have been on the decline, 74% to 95% of adolescent pregnancies are unintended. Emergency contraception, the use of hormonal therapy up to 120 hours after unprotected sexual intercourse, may decrease the rate of unintended adolescent pregnancies. Education about and access to emergency contraception does not increase the frequency of intercourse and unprotected intercourse and should be offered to all adolescent women when sexuality issues are discussed. The American Academy of Pediatrics supports improved availability of emergency contraception, including full support of over-the-counter access.²⁹

All adolescents need and deserve confidential care. Perhaps one of the most ethically challenging and controversial issues is providing confidential care to the pregnant adolescent considering an abortion. Minors have the legal right to obtain an abortion without parental involvement or consent unless state law requires such involvement. If parental involvement is required, there must be a process to provide for judicial bypass. Most adolescents considering abortion actively involve their parents or other trusted adults in their decision-making process. Parental involvement in an adolescent's important life-changing decision might be desirable or even ideal, but legally required involvement may cause a delay in seeking care. The American Academy of Pediatrics recommends that an adolescent should involve a parent or other trusted adult in the decision-making process, but the adolescent's right to confidential care must be respected.³⁰

Drug Use and Drug Screening

Drug testing may need to be done as part of a diagnostic evaluation of a patient with an altered level of consciousness. As such a patient would not be able to consent, testing with a clear medical indication would be covered by the community standard of presumed consent for emergency medical care.^18,31 Drug testing may also be required if a patient is in need of mental health services and needs to be aligned with the most appropriate treatment program or facility. Such testing should only be done with the consent of the patient, but might be permissible without consent if the patient is under an involuntary psychiatric hold. Sometimes drug testing may be required by law enforcement, but physicians should only participate in criminal investigations as required by law or court order.³²

A parent may request drug testing if they suspect their child has been using drugs. There may be a conflict between the interests of the patient from the patient's and parent's perspective. It might be appropriate to test a young child without their assent but with a parent's permission, but an older adolescent should only be tested with full informed consent.^17,18

Drug screening at home or as a condition of participation in sports or other school-related activities is also problematic. All tests have false positives and false negatives, and issues related to sensitivity, specificity, and pretest probability require careful interpretation of a test result that might lead to misinterpretation of reality.³¹ The cross-reactivity of prescription and over-the-counter medications and food products can cause additional problems with interpretation. A physician participating in a screening program would face conflicts regarding confidentiality, the therapeutic relationship, and the punitive result of such testing.³² The American Academy of Pediatrics opposes involuntary screening of older adolescents by parental request. Until research demonstrates safety and efficacy, the Academy also opposes commercially available home drug testing or testing as a condition for participation in sports or any other school function.^32,33

Providing emergency medical care to children embodies many of the core ethical values of medicine, including providing care to anyone in need; despite their perceived need at presentation, immigration status, insurance, or ability to pay. Ethical challenges unique to pediatric emergency medicine present an opportunity and need for ongoing exploration and discussion with emergency medicine physicians and pediatricians. Children have an evolving capacity to take part in healthcare decisions, and by adolescence they may be able to make decisions as well as adults. Keeping the best interests of the child as the central focus should help guide physicians through the most challenging cases.