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 far different philosophical, moral, or religious viewpoints.1–3
Emergency medicine physicians are responsible for providing medical care in an increasingly fiscally and ethically challenging environment. Emergency care is provided to anyone in need, regardless of immigration status or ability to pay. Emergency departments are the only places in the United States where all patients are guaranteed medical care, serving as an essential medical safety net.4 This fundamental dedication to provide care to those most in need or with no other health care options is a core ethical value of emergency medicine.2,3
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 in order to provide for the best possible outcome for the child from each party’s perspective.
An emergency medicine physician 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 focuses on the ethical considerations at the intersection of emergency and pediatric medicine.
Pediatric patients make about 30 million visits to emergency departments in the United States each year, accounting for about 25% of all emergency department visits.4 Ninety-two percent of these visits are to general community emergency departments. Although overcrowding of emergency departments is difficult to define, a reasonable definition is when the need for medical services exceeds available resources. More than 90% of academic emergency departments 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 emergency department to other health care 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 emergency department visit, and a fair number were hospitalized.6 Pediatric-specific triage protocols should be utilized at all emergency departments, 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 emergency department. 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 re-triaged 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 emergency department.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 triage assessment that the complaint is low-acuity.8
Poor, immigrant, homeless, uninsured, and migrant 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. Poor children have higher rates of under-immunization, acute illnesses, asthma, injury, malnutrition, and mental health issues than the general population. In addition to the problems associated with poverty, there may be significant cultural and language barriers to obtaining effective care.9,10 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 federal, state, and community resources to help them access the Emergency Medicaid program and other services to support their overall health and well-being.9,10
As emergency departments serve as the crucial safety net for those lacking another source of healthcare, barriers to care would place this vulnerable population at risk. 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.12 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.13
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. A parent or caretaker may have conflicting interests, including wanting what is best for the child as well as their own interest in avoiding investigation and prosecution. 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. Even when a child is in protective custody, the parent may still remain in charge of medical decision-making for 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.14
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 in order 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 consent remains the appropriate term for an adult or adolescent with decision-making capacity. 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 decision-making capacity is also very important and should be sought whenever possible and appropriate.15,16 Professional interpreters should be used whenever a language barrier exists to assure that the informed consent process is thorough and legitimate.17
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 is unable to provide informed consent due to incapacity or if a parent is not present to provide permission.2,7,16
The process of obtaining parental permission and patient assent for non-emergent 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.1,7,15,16 We struggle with these issues as we recognize that usually (but not always) parents are concerned and loving advocates for what they believe to be best for their children. But children also have rights,18 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.15,16