Legal Issues Affecting Children with Preexisting Conditions During Public Health Emergencies

Abstract

Among the millions of children in the United States exposed to public health emergencies in recent years, those with preexisting health conditions face particular challenges. A public health emergency may, for example, disrupt treatment regimens or cause children to be separated from caregivers. Ongoing shortages of pediatricians and pediatric subspecialists may further exacerbate the risks that children with preexisting conditions face in disaster circumstances. The US Department of Homeland Security recently called for better integration of children's needs into all preparedness activities. To aid in this process, multiple legal concerns relevant to pediatricians and pediatric policymakers must be identified and addressed. Obtaining informed consent from children and parents may be particularly challenging during certain public health emergencies. States may need to invoke legal protections for children who are separated from caregivers during emergencies. Maintaining access to prescription medications may also require pediatricians to use specific legal mechanisms. In addition to practitioners, recommendations are given for policymakers to promote effective pediatric response to public health emergencies.

Children with preexisting health conditions face particular challenges during public health emergencies. Their treatment regimens may be disrupted or they may be separated from caregivers, and a shortage of pediatricians may further exacerbate the situation. Obtaining informed consent from children and parents may be particularly challenging at these times. The authors make recommendations for policymakers to promote effective pediatric response to public health emergencies.

In recent years, millions of children in the United States have been exposed to natural disasters, mass infectious disease outbreaks, and other public health emergencies.^1,2 Compared to adults, children face a greater risk of physical injury in these circumstances.³ Coping skills also are generally less developed in children than adults, making them susceptible to posttraumatic stress and other mental health disorders.⁴

The needs of children with preexisting health conditions are a particular concern during public health emergencies. Children with preexisting conditions often have specific medication or treatment needs and may depend on a caregiver;⁵ a public health emergency can cause treatment disruptions, with important ramifications. For example, among children affected by Hurricane Katrina, those with preexisting conditions, such as diabetes or sickle cell disease, were significantly more likely to face interruptions in care and the manifestation of at least 1 new symptom.⁶ Other studies have confirmed that preexisting health conditions are associated with the development of certain adverse mental health consequences in children following a public health emergency.^7,8 Many children with preexisting, chronic health conditions—both physical and mental—rely on their pediatricians for ongoing care, making pediatricians vital participants in emergency preparedness and response activities.

In March 2012, the US Department of Homeland Security (DHS) released its National Preparedness Report and underscored potential risks by noting that children's needs must be better integrated into preparedness activities.⁹ This recommendation may be difficult to heed in light of shortages of pediatricians and pediatric subspecialists in areas such as emergency medicine, critical care medicine, and psychiatry.^10,11 Disasters have the potential to exacerbate pediatric workforce deficiencies, leading to unmet healthcare needs among children.

Multiple legal concerns of relevance to pediatricians, policymakers, and emergency planners arise in the treatment of children with preexisting health conditions during and shortly after public health emergencies. This article considers laws at the federal and state levels that may influence pediatricians' ability to provide care to individual children, and it addresses the broader policy implications of relevant laws intended to promote children's health during public health emergencies. We identify possible solutions to challenges posed by certain laws during disasters and explain how policymakers and emergency planners, as well as pediatricians themselves, can ensure that children with preexisting conditions receive the best possible care should a public health emergency occur.

Legal Issues for Practitioners

In emergency and nonemergency contexts, pediatricians are required to adhere to certain legal duties. Although public health emergencies, such as infectious disease outbreaks or natural disasters, may cause pediatricians to provide care in exigent or otherwise challenging circumstances, their legal duties must still be fulfilled. These duties include, for example, the requirement to report child abuse and maintain the confidentiality of patients' healthcare information. Depending on the nature and duration of a public health emergency, pediatricians may find that treating children with preexisting conditions raises specific legal concerns in areas such as obtaining informed consent and ensuring a supply of necessary prescription medications.

Obtaining Informed Consent

The legal requirement to obtain an individual's informed consent before providing most treatment remains a critical aspect of the physician-patient relationship for children and adults.¹² The primary exceptions occur when a patient is unconscious or faces a medical emergency and a provider determines that immediate action is required. Pediatricians routinely engage in complex determinations about children's and adolescents' capacity, or ability to understand relevant information, as part of the informed consent process. For children with preexisting conditions like autism and other developmental delays, which may interfere with verbal facility and cognitive functioning,¹³ such determinations may be especially complex even in nonemergency situations.¹⁴

Clinical decisions about a child's mental capacity must be reconciled with a state's legal age of consent. Each state has established an age at which adolescents are deemed legally capable of providing informed consent for health care without parental involvement—typically at ages 15 to 18.¹⁵ States also recognize emancipated minors and mature minors who, though younger than the state's legal age of consent, have been deemed capable of understanding and therefore consenting for their health care. While there is some variation among the states, emancipated minors typically fall into one of several categories, such as minors who are married or who are parents.¹⁶ Finally, many states have identified certain conditions, including substance abuse and mental health issues, for which minors may seek care without first obtaining parental consent. Importantly, a minor's legal ability to give informed consent does not necessarily guarantee the confidentiality of medical records from inquiries by parents or guardians.

For unaccompanied minors who do not fit a state-defined exception, parental consent is necessary before medical treatment commences, unless the minor is unconscious or needs immediate care to address a medical emergency. The American Academy of Pediatrics' (AAP) Committee on Bioethics recommends that, as children age, decisions about medical care should involve the child, the parent, and the healthcare provider. This means, for example, that a healthcare provider should, to the extent possible, help a child to understand the nature of a medical condition and what is likely to happen with a particular treatment.¹⁷ The child can then assent to the treatment as the parent provides the legally required informed consent.

Public health emergencies may challenge pediatricians' ability to comply with informed consent requirements. For a pediatrician who is treating a child with a preexisting condition for the first time, emergency circumstances create a lack of context that may interfere with certain legally mandated determinations. In addition, pediatricians may have little time to assess children's capacity to consent or to engage in the AAP's suggested assent process. They also may not be able to ascertain whether a minor legally should be treated as “emancipated” or “mature.” This determination becomes particularly complex for minors who are displaced and may have difficulty proving their legal status. Because the legal categorization of emancipated and mature minors varies by state, pediatricians who participate in emergency responses outside of their home state will likely not be familiar with relevant laws in the state experiencing the emergency. Ideally, pediatricians who intend to take part in response efforts should receive advance training about informed consent processes during emergencies, and the law of the state they will be practicing in, to anticipate and address these issues. This information could be provided by the health system with which they are affiliated, through continuing medical education courses, or by volunteer registration programs, such as the Emergency System for Advance Registration of Volunteer Health Professionals (ESAR-VHP).

Addressing Separation from Caregivers

During a disaster, children may be separated from their parent or guardian because of displacement, serious injury, or challenges related to communication and transportation. These separations may last for several hours, as occurred for some children in New York City after the September 11, 2001, terrorist attacks,¹⁸ or they may continue for weeks or months. After Hurricanes Katrina and Rita, the National Center for Missing & Exploited Children received reports of more than 5,000 children who were separated from their families.¹⁹ One month after Hurricane Katrina, approximately 2,000 children were still separated from their families; the last reported separated child was reunited with her family 6 months after the hurricane.

Separation from caregivers may be an even greater problem for children with preexisting health conditions. Compared to children without preexisting conditions, children with preexisting conditions may be less well able to cope with even brief separations and may find it more difficult to cooperate with healthcare providers and engage in the informed consent process. In addition to these concerns, without the presence of a parent, pediatricians may have difficulty ascertaining the nature of the child's preexisting condition and his or her preferred and most effective treatment regimen.

To protect the interests of children who are separated from their families and caregivers, states can utilize their parens patriae power. Through this power, states can step into the “parental” role to safeguard the welfare of individuals, such as children, who lack legal capacity and may be unable to understand the nature of their decisions and circumstances.²⁰ This may include the appointment of a temporary guardian, to ensure that an adult who can legally consent to the child's mental or physical health care is available should such care be needed.²¹ Once family reunification occurs, the temporary guardianship terminates, and the parent resumes responsibility for the child's health and welfare. Therefore, during and shortly after a disaster, pediatricians should be especially aware that the adult accompanying a child may not have the legal authority to provide consent for the child's health care. They should take care to determine which adult (eg, legally appointed temporary guardian, permanent guardian, parent) has the authority to consent to the child's care during a public health emergency.

Because familial separation following an emergency may last for prolonged periods, pediatricians may want to discuss this possibility with parents, particularly for children with preexisting health conditions or those living in emergency-prone areas (eg, regions with a high incidence of tornados or hurricanes). Children who depend on medication to maintain their mental or physical health may not know, or be able to memorize, a drug's correct name and dosage. While a state-appointed temporary guardian could provide informed consent for a child, this individual would probably not have immediate access to information about the child's preexisting condition or medications. Therefore, in advance of an emergency, pediatricians may want to raise certain options with parents, such as having children routinely carry medication information. The benefits of this approach, however, must be balanced with the risks posed by inadvertent disclosure of a child's confidential health information.

Prescribing Medications

In nonemergency situations, pediatricians' medication prescribing authority is regulated at the federal and state levels. These laws remain in effect unless they are explicitly waived during an emergency.²² Children with preexisting conditions, such as diabetes, epilepsy, or asthma, may rely on prescription maintenance medications. Some of the medications prescribed to children with preexisting conditions, such as opioid medications for management of severe pain, are classified as Schedule II drugs, placing them among the most strictly regulated prescription medications.

In general, Schedule II drugs require a written prescription that cannot be refilled without a wholly new prescription. However, federal law provides a mechanism that allows healthcare providers to issue additional prescriptions for these drugs, which may be especially useful as part of an emergency response. According to federal regulations, a healthcare provider can write multiple prescriptions—totaling a maximum 90-day supply—for a person who uses a Schedule II drug to treat a health condition.²³ The provider can determine when multiple prescriptions should be issued, as long as this also complies with state law. Many states, including Illinois,²⁴ New Jersey,²⁵ and Texas,²⁶ have amended their laws to legalize this practice.

When a disaster can be anticipated, such as some weather-related events, pediatricians can work with parents and children in their practice to ensure that a child's medication supply will not be interrupted. In these situations, pediatricians may elect to issue multiple prescriptions for a Schedule II drug. Of course, the ability to prescribe a 90-day medication supply is useful only if children and their families have access to a functioning pharmacy or other emergency dispensary, such as a mobile pharmacy trailer.²⁷ Assuming that maintenance medications are available to be dispensed, pediatricians would benefit from state-based registries that capture prescription information for children with preexisting conditions. This would allow pediatricians to rapidly understand a child's current medication needs and, ideally, avoid mistakenly issuing multiple prescriptions.

Policies to Promote Effective Pediatric Response

Many federal and state policies have the potential to facilitate pediatricians' emergency response efforts for children with preexisting conditions. All 50 states and US territories have developed their own patchwork of laws to allow out-of-state physicians, including pediatricians and other specialists, to temporarily practice in-state should a disaster occur. While these policies may not directly affect the response activities of every participating pediatrician, their implementation serves an overall goal of promoting children's health during an affected community's response and recovery. Policymakers, emergency planners, and professional organizations that work directly with pediatricians should develop an understanding of certain key preparedness policies to support relevant government efforts, disseminate pertinent information to their constituents, and, when appropriate, provide continuing education opportunities in emergency preparedness for pediatricians.

Healthcare Coverage

Approximately 36 million children in the United States receive healthcare coverage through Medicaid and the State Children's Health Insurance Program (CHIP).²⁸ For qualifying children, these government programs cover screening and treatment for new and preexisting mental and physical health conditions. Both programs are heavily regulated at the state and federal levels regarding eligibility for coverage and reimbursement processes for providers. Emergencies can make it difficult or impossible for pediatricians to adhere to program requirements, leading to difficulties in ensuring continuity of care for children with preexisting health conditions.

Fortunately, the federal government has established a mechanism to modify certain aspects of the Medicaid and CHIP programs during emergencies. Section 1135 of the Social Security Act allows the Secretary of the Department of Health and Human Services (HHS) to temporarily waive some requirements to ensure that individuals enrolled in these programs continue to receive healthcare services and that providers are reimbursed. In general, the waivers limit sanctions that providers may face for failing to comply with federal requirements. An 1135 waiver can be invoked when the president has officially declared a “disaster” or “emergency” under either the National Emergencies Act²⁹ or the Robert T. Stafford Disaster Relief and Emergency Assistance Act³⁰ and, simultaneously, the HHS secretary has declared a “public health emergency” under the Public Health Service Act.³¹ The waiver applies only to the geographic area specified in the emergency declaration, and its effect ends when the emergency declaration is terminated. It may be renewed by the HHS secretary in 60-day increments.

The federal government has used section 1135 waivers to facilitate healthcare responses to emergencies, such as Hurricane Katrina in 2005 and the H1N1 flu pandemic in 2009, by altering requirements associated with CHIP.³² Once the federal waiver is issued, healthcare facilities apply to a regional office of the Centers for Medicare & Medicaid Services and request permission to operate under the conditions established by the waiver. Importantly, an 1135 waiver does not alter state or local laws or regulations; it only temporarily affects requirements that the federal government establishes for Medicaid and CHIP. This can temporarily ameliorate billing and reimbursement concerns for pediatricians who provide care outside of their home state during an emergency as well as for pediatricians treating individuals who have been displaced from their home states due to the emergency.

By understanding the general terms of the 1135 waiver process, pediatric professional organizations can better respond to parents' inquiries about their children's healthcare coverage during public health emergencies and pediatricians' concerns about potential disruptions to Medicaid and CHIP billing and reimbursement processes. Children's hospitals and other pediatric healthcare delivery organizations can improve emergency response by taking full advantage of these waivers when they become available.

Short-Term Crisis Counseling

Even if children do not experience physical harm, witnessing a disaster and its aftermath can be associated with subsequent depression or anxiety,³³ which sometimes emerges long after the disaster has subsided. A study of more than 150 elementary school students in the New Orleans area found that, 33 months after Hurricane Katrina, nearly half of the children (46%) reported symptoms of posttraumatic stress disorder, categorized as moderate to severe.³⁴

The shortage of pediatric mental health specialists leaves many children's preexisting or newly emergent mental health conditions to be identified and addressed by pediatric primary care providers.^35,36 However, a survey conducted by the AAP after the terrorist attacks on September 11, 2001, found that, even when pediatricians identified postdisaster mental health conditions in children, many were not comfortable treating these disorders, as they fell outside their traditional areas of expertise.³⁷ Given these concerns, pediatric professional organizations should be knowledgeable about the ways in which the law can facilitate responses to children's mental health needs following a disaster. They can then help their members to understand when these additional resources become available and the scope of their services.

After the president makes a declaration of a “major disaster” under the Stafford Act, the federal government can implement the Crisis Counseling Assistance and Training Program (CCP), which provides services to children and adults.³⁸ CCP funds are available through the Immediate Services Program and the Regular Services Program. The Immediate Services Program, which is overseen by the Federal Emergency Management Agency (FEMA), funds crisis counseling services for up to 60 days in the immediate aftermath of a presidential declaration of disaster. The Regular Services Program, administered by the Substance Abuse and Mental Health Services Administration (SAMHSA), provides up to 9 months of funding for the provision of crisis counseling services in an affected community after a disaster declaration. An additional 90-day extension may be granted to an affected state in “extraordinary circumstances.”³⁹ For example, shortly after a tornado leveled much of Joplin, Missouri, in 2011, CCP teams with relevant expertise were dispatched to all area schools and licensed daycare centers to offer crisis counseling services to children.⁴⁰

The federal government requires CCP funds to be used to support short-term needs for crisis counseling and related services, such as individual and group counseling sessions. These services may provide auxiliary support to meet the postdisaster surge in demand for children's mental health care. In light of the program's short-term services, CCP providers are trained to give referrals to individuals in need of ongoing mental health support. In the days and months after a disaster, pediatric professional organizations can encourage pediatricians to work together with CCP providers, share information about CCP services with parents, and explain the potential benefits of the program for children and their families.

Participation in Emergency Responses

The Institute of Medicine (IOM) has recommended that, when receiving emergency healthcare services, children should be treated by “providers with formal training and experience in pediatric emergency care.”^41(p7) This is especially true for children with preexisting conditions, as their conditions may add a layer of complexity to an emergency assessment, in contrast to children with no preexisting conditions. In accordance with the IOM recommendation, in some circumstances pediatricians may be asked to provide mental and physical health care in a state affected by an emergency where they are not licensed to practice. States, emergency planners, and pediatric organizations can work together to enact and, importantly, implement laws to facilitate licensure portability between states for pediatricians.

Several laws have already been passed to allow specialist healthcare providers to participate in emergency response efforts. All 50 states have enacted legislation to join the Emergency Management Assistance Compact (EMAC).⁴² Under EMAC, a state facing a disaster can receive aid from member states, including personnel and equipment. EMAC facilitates licensure portability by allowing a state facing a disaster to recognize the licenses of healthcare providers who are validly licensed in another member state. EMAC's provisions are limited to “state agents,” defined as individuals who work for government agencies or those who have been recognized as “state agents”—legislatively or through other means—for purposes of an emergency response. For example, pediatricians working for a state or local health department would qualify.

Other legislative options are available for states to engage in credentialing processes for pediatricians who volunteer to participate in a response. Thirteen states have enacted the Uniform Emergency Volunteer Health Practitioners Act (UEVHPA), which allows participating states to recognize the licenses of out-of-state volunteer healthcare professionals during a disaster response.⁴³ In participating states, UEVHPA may facilitate licensure portability for pediatricians who have previously registered with an aid organization before participating in a disaster response. ESAR-VHP supports a network of state-level initiatives that assist with this type of advance registration.⁴⁴ By registering with a volunteer network before an emergency occurs, pediatricians can ensure that their licensure and credentials are verified in advance of an emergency. Some states have enacted their own emergency preparedness laws, often based on language in the Model State Emergency Health Powers Act, to facilitate licensure portability for healthcare professionals and, thus, ensure potentially more effective responses. In many states, this can be similarly accomplished by the governor or other designated official with authority to temporarily waive certain laws during emergencies.

When participating in an emergency response in their home state or elsewhere, pediatricians may be asked to engage in activities outside their primary area of expertise, including providing mental or behavioral health care. In addition, during an emergency response, pediatricians may provide care in nontraditional settings, such as temporary shelters. Professional organizations such as the AAP have produced numerous publications to assist pediatricians as they care for children during disasters and adjust their typical clinical practices.⁴⁵ The IOM's 2012 report and recommendations about crisis standards of care during emergencies provide helpful guidance as well.⁴⁶ Also, entities including the AAP Committee on Pediatric Emergency Medicine have highlighted the importance of liability protections for individuals who participate in a disaster response.⁴⁷ Because traditional malpractice insurance may not cover the types of scenarios that occur during emergency responses, many emergency laws include their own liability protections for healthcare providers. For example, both EMAC and UEVHPA contain provisions to limit liability for individuals who participate in a response under their auspices.

Conclusion

Millions of children with preexisting conditions are exposed to public health emergencies each year in the United States, placing their mental and physical health in jeopardy. In the days and weeks after a disaster, these children should receive care from pediatricians familiar with disaster response protocols. These pediatricians are tasked with the twin responsibilities of complying with traditional legal duties (eg, securing informed consent, adhering to prescribing requirements) and capitalizing on opportunities provided by the government's emergency legal powers (eg, temporary waivers of CHIP requirements, availability of CCP services). To help pediatricians understand these policies, state-level pediatric professional organizations should be prepared to explain their practical application in disaster circumstances.

For children to benefit from pediatricians' knowledge and expertise after a disaster, the law must grant pediatricians the flexibility to participate in responses, within and outside of their home states. Although the law already anticipates some legal issues in emergencies—such as licensure portability—others still require attention. For example, recognizing the exigent circumstances a disaster may create, states could consider slight modifications to their informed consent laws during declared emergencies, perhaps relying on the IOM's recent report about crisis standards of care. Policymakers at the local, state, regional, and national levels should ensure that pediatricians' expertise and perspectives are represented at all stages of the planning process, with the ultimate goal of anticipating and addressing legal challenges before a disaster occurs. By actively participating in this process, pediatricians and their professional organizations can join emergency planners and policymakers to help communities improve their responses to children's mental and physical health needs—both preexisting and newly emergent—during and after disasters.

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