Author: Ronald M. Perkin, MD, MA, Professor and Chairman, Department of Pediatrics, Brody School of Medicine, East Carolina University, Greenville, NC.
Peer Reviewer: William A. Woods, MD, FAAP, Assistant Professor of Emergency Medicine and Pediatrics, University of Virginia Health System, Charlottesville.
The Convention on the Rights of the Child ("the Convention"), adopted by the General Assembly of the United Nations in 1989, places a clear obligation on health authorities and practitioners to evolve policy and practice in accordance with the human rights of children.1,2 Making a commitment to respect the rights of children has profound implications for the status of children in our society. Nowhere is this more evident than in the field of health care, where the decisions and actions of professionals impact on children’s lives in profound, intimate, and powerful ways. Children’s rights generate obligations and responsibilities that must be honored.
Examination of two important principles in the Convention highlights the implications of taking a rights-based approach to children. Article 12 of the Convention states that all children capable of expressing a view have the right to do so freely in all matters of concern to them, and that their views shall be given due weight in accordance with their age and maturity. Respecting children’s rights to be heard does not mean that their views must always prevail. However, it does mean that those views should inform decision-making processes on matters that concern them. This has significant implications for practice. It involves giving children the necessary information with which to participate fully in decision making. It must be emphasized that such information must be given clearly, sensitively, and at an appropriate pace for the individual child. Promoting children’s active participation is important as a matter of principle—children, like adults, have a right to services that take account of their concerns, experiences, and views. But their participation is also valuable as a means of improving quality, raising standards, and ensuring the development of relevant and appropriate services.
An equally central principle is Article 3 of the Convention, which states that in all actions affecting the child, the best interests of the child must be a primary consideration. Giving primary consideration to the best interests of the child does have significant implications. It applies to decisions that affect the individual children—the nature of treatment, the decision to treat, and how that treatment is applied—but also requires giving consideration to children’s best interests within the services as a whole.
If children’s interests are to be a primary consideration in the broad provision of health services, then explicit consideration must be given to children in the allocation of budgets, the organization of services, and their inclusion in research programs. Children do not have access to the powerful lobbies that influence public policy. They cannot vote, and they rarely can advocate on their own behalf. It is too easy, therefore, for children’s rights, needs, and interests to be swamped by more vociferous and influential voices. Without the vote and access to the arenas where decisions are made, children’s rights have and will consistently be disregarded, unless adults are prepared to advocate on their behalf and create avenues through which children can be heard in their own right. Investment in children now is probably the most effective strategy for ensuring a stable, humane, democratic, and economically sound society of the future. The challenge rests with those who are committed to respecting children’s rights and have the information and power to make a difference.
Informed consent has become a widely accepted ethical and legal doctrine during the past half-century.3 Requiring physicians to seek the voluntary and informed consent of the patient (or from the patient’s surrogate or guardian) before testing and treatment has become the ethical cornerstone of contemporary medical practice.3,4
The ethical and legal justification for requiring informed consent is respect for the autonomy and self-determination of patients. As free, autonomous human beings, patients have an ethical and legal right to consent to tests and therapies they wish to undergo and to refuse tests and therapies they do not want.3
A patient’s consent becomes valid when three conditions are fulfilled: 1) adequate information has been provided to the patient by the physician to permit a rational treatment consent or refusal; 2) the patient possesses the capacity to make medical decisions; and 3) the treatment consent or refusal is made freely without coercion by persons or agencies.
Adequate information is that information which a reasonable person would require to make a treatment decision. Reasonable people need to know their choices; the general risks, benefits, and probable outcomes of their choices; and reasons for the physician’s recommendation of the favored choice. Side effects of treatment should be discussed to the extent that they are common or serious.
The ability to participate in care decisions is called decision-making capacity.4 This is distinct from the legal concept of competency, which only a judge has the authority to determine.4 Decision-making capacity can and should be assessed by clinicians. In clinical settings, the capacity to consent to treatment frequently is referred to as "competence." In this nonlegal usage, competent means simply that the patient has the capacity to understand the context of the decision, the choices available, and the likely outcomes of the choices, and can process this information rationally to reach a decision about consent. Patients who are incompetent require a surrogate decision maker.
Lack of coercion means the absence of threats or other reasonable and irresistible external pressure to reach a particular decision. It is not coercive for a physician to make a strong treatment recommendation as long as the reasons for that recommendation are stated fairly and the facts are not exaggerated.3
The way in which physicians convey information to patients influences how the patients will respond. The effect of how the patient is presented information is called the framing effect.3,5 There are numerous studies showing the importance of framing on patients’ decisions. It is essential that physicians frame the information they convey to patients in the most honest and unbiased way. Afterward, they can provide their opinion about the treatment recommendation, but fact and opinion should be kept separate so a patient can agree with the physician about the facts but disagree about the opinion. As with many guidelines, one can fulfill the "letter of the law" without fulfilling the ethical spirit of obtaining informed consent. The best way to fulfill both senses is to be vigilant in pursuing the spirit of informed consent. Establishing the patient-physician relationship, providing disclosure of risks, and making the patient a full partner in decision making will improve the quality of the informed consent process and decrease the likelihood of litigation.4
A patient’s signature on a written consent form is not the consent; it is merely the legal formalization of a preceding consent process of communication. Informed consent is a process, not an event.3 It is an ongoing dialogue between physician and patient in which the physician explains and the patient asks questions and receives answers. Comprehension of medical data by patients is an ongoing process that requires continuous explanation. Ideally, the physician and the patient form a dyad that practices "shared decision-making." The physician brings facts about diagnosis, prognosis, treatment options and outcomes, and a treatment recommendation. The patient brings a unique set of personal values and preferences with which to interpret the medical data and recommendation, and then consents or refuses.
The patient who lacks decision-making capacity does not lose the right to consent or refuse therapy. Rather, the right is transferred to a surrogate decision maker to consent or refuse on behalf of the patient. Thus, the physician must initiate the same dialogue of consent with the surrogate of an incompetent patient as with the competent patient, and obtain consent for treatment from the surrogate on behalf of the incompetent patient.
In adult medicine, the surrogate may have been appointed formally or informally. Formal, legal surrogacy appointments include those performed under advance directives, such as the durable power of attorney for health care or health care agent statutes present in most states.3 Citizens of these states have the right to formally appoint a legal surrogate whose authority becomes activated by the incapacity of the patient. Many states also have enacted health care proxy laws that automatically name a legally authorized surrogate from a statutory priority list of close relatives, in the absence of a prior directive.6 Chronically incapacitated persons also may have been granted guardians by state agencies, who have legal authority to make medical decisions on behalf of the patient.
Informal surrogate decision-making is practiced widely in circumstances in which there has not been a previous formal legal appointment. In these situations, the nuclear family is permitted to consent or refuse on behalf of the patient. Although this process lacks strict legal authority, it is conducted successfully in practice so long as the family is united in opinion and the physician believes they are representing the patient’s best interest. If there is a disagreement among family members or evidence of nonaltruistic decision-making, the physician should consider asking a court to appoint a legally authorized surrogate.
The process of medical surrogate decision-making follows established standards. The standards were enumerated first as legal doctrines, but clearly they were based implicitly on ethical grounds. The highest standard is the standard of expressed wishes. Surrogates should strive to follow any specific previously expressed wishes that pertain to a particular clinical situation because doing so maximally respects the self-determination of the patient whom they represent. However, experienced clinicians are aware that this standard rarely can be applied in practice because most patients could not have anticipated the exact clinical circumstances in which they would later find themselves.
When the standard of expressed wishes cannot be followed, surrogates should follow the standard of substituted judgment. By this standard, the surrogate should attempt to reproduce the decision that the patient would have made in this situation by applying the patient’s value system to the specific clinical circumstance. The surrogate should be told that the decision to consent or refuse is not solely his or hers; the surrogate’s task is simply to make the decision that the patient would have made. Successfully deciding by a standard of substituted judgment satisfies respecting patient self-determination.3
Successfully executing substituted judgment requires knowledge of the patient’s value system and the courage to uphold it. But many surrogates appointed by courts or state agencies cannot know the wishes of the patients whom they represent and thus are forced to decide on the basis of their perception of the best interests of the patient. The best interest standard ethically is weaker than the above two standards because it does not follow the patient’s expressed or presumed wishes. Rather, it requires the surrogate to perform a value judgment on the surrogate’s perceived benefits of treatment compared with the perceived burdens to the patient. The ethical weakness stems from a third party making such a value judgment.3
Informed Consent in Pediatrics
In pediatric practice, society grants parents the authority to serve as surrogates to make medical decisions on behalf of their children. This role is part of the broader authority society grants parents to raise children in the way they believe is best for their children and that best represents their interests.7 The details of parental surrogate authority show how the analogy of a child to an incompetent patient is an incorrect basis for this appointment.
A uniform standard for consent in pediatric practice is impossible because the age range of the patients varies from obviously incompetent infants to obvious competent late adolescents, encompassing all variations in between. Infants and preschool children comprise the class of "never-competent" patients. Not only are they incapable of making decisions, but their wishes cannot be known by their parents to permit a substituted judgment determination. Therefore, the best interest standard must be applied routinely to this group. Parents decide what is in the best interest of their children by conducting an analysis of benefits vs. burdens. They consider if the pain, suffering, and other evils imposed on the child by the treatment are justified by the expected benefits to the child. Their decision is made in conjunction with the child’s physician, who provides information, recommendations, and guidance.
The school-aged child begins the development of cognitive capacities necessary to understand health issues, medical care, and the implication of decisions made now about future events. These capacities include abstract reasoning, inductive and deductive logical processes, and cognitive complexity. In their study of cognitive development in children, one group concluded that independent consent by minors younger than age 11 was not feasible, that consent by minors older than age 15 was feasible, and that ages 11-15 years represented an intermediate zone.8 Similar findings were reported by other authors.9,10 Thus, by age 14 or 15 years, most patients have achieved the requisite cognitive capacity to make independent, rational medical decisions.
Faced with a consent issue in an adolescent, the essential question is the clinical assessment of capacity to make health care decisions. Clearly age alone is an inadequate criterion because of the great variation in cognitive development at any given age. One group provided guidelines for assessing decision-making capacity in adolescents.11 They suggested that physicians should individualize each determination and consider four interrelated factors: reasoning, understanding, voluntariness, and the nature of the decision to be made. They suggested a graduated program of involvement of children and adolescents in decision-making about their medical care as a consequence of the capacities they demonstrate in each of these four categories.
Assent and Dissent
The most sweeping policy of organized pediatrics regulating consent in minors was the 1995 report of the American Academy of Pediatrics (AAP) Committee on Bioethics entitled "Informed consent, parental permission, and assent in pediatric practice."12 This report explained the new concepts of "assent" and "dissent" of minors and clarified their distinction with consent and refusal in adults. The AAP stated that, to the greatest extent feasible, decision-making involving older children and adolescents should include the assent of the patient in addition to participation by the parents and physician. A minor’s assent for testing or treatment should include at least the following elements:
1. Helping the patient achieve a developmentally appropriate awareness of the nature of his or her condition;
2. Telling the patient what he or she can expect with tests and treatment(s);
3. Making a clinical assessment of the patient’s understanding of the situation and the factors influencing how he or she is responding (including whether there is appropriate pressure to accept testing or therapy); and
4. Soliciting an expression of the patient’s willingness to accept the proposed care.
Regarding the final point, no one should solicit a patient’s views without intending to weigh them seriously. In situations in which the patient will have to receive medical care despite his or her objection, the patient should be told that fact and should not be deceived.
The document clarified that assent of the "developmentally appropriate" child or adolescent was a necessary but insufficient condition for valid consent; the permission of the parents also was legally and ethically necessary. They were clear to use the term "parental permission" and not "parental consent" to underscore that parental permission alone was insufficient for valid consent. The document also defined the term "dissent" as the refusal of assent by the older child or adolescent. They stated that, despite permission of the family, when faced with a dissent from the older child or adolescent, medical personnel should withhold the treatment in question until interventions convince the patient to assent. Coercion should be reserved only as a last resort because it diminishes the moral status of children.12
Consent for Emergency Treatment
The principal exception to informed consent requirements surrounds treatment in medical emergencies when, because of time and availability, it may not be feasible for physicians to obtain consent. In these cases, if physicians plan to provide the generally accepted therapy for the emergency condition in question, the emergency treatment doctrine permits physicians to provide treatment on the basis of presumed consent.13 In a review of 30 years of emergency medical treatment, the absence of consent did not constitute the basis for any legal judgment against a physician.14
The law always implies consent for treatment of a child in the event of an emergency. A child’s life and health should never be compromised by a delay in an attempt to obtain consent. Parental consent is not needed; it is assumed. When time permits, attempts can and should be made to obtain consent by telephone. The medical record should reflect all attempts, including those that are unsuccessful.
This notion of implied consent in an emergency is an exception to the general consent requirement. Two criteria must be met before it applies. First, the patient must lack competence to make decisions independently. The minor child is deemed incompetent as a matter of law; thus, the first criterion is established.
Second, an emergency must exist. The definition of "emergency" has not been determined or agreed upon by all courts. Clearly, an emergency exists when immediate treatment is necessary to preserve a patient’s life or to prevent permanent disability. Similarly, immediate treatment to alleviate pain and suffering has been deemed an emergency.13 When both criteria are met, care may be provided.
Recently, many states have broadened the definition of "emergency." Most states have case law or legislation providing a basis for treatment without parental consent when "prompt" treatment is necessary. The harm resulting from an "emergency" may be severe or slight. The physician need not be certain as to the actual eventuality of harm, but only that harm or injury is a reasonable possibility.13 Thus, the emergency physician has broad discretion in this area. Generally, if the delay for the purpose of obtaining consent could adversely affect the child, the physician should initiate evaluation and management under the emergency exception to the consent requirement.
The AAP Committee on Pediatric Emergency Medicine, in a position paper on consent for emergency services for children and adolescents, has made a number of further practical recommendations regarding consent in emergency situations.15
These recommendations admonish pediatricians to become familiar with applicable laws, urge emergency departments (EDs) to develop policies regarding presumed consent, recommend good documentation, and suggest that schools and other caretakers maintain health records and signed consents for emergency treatment. Furthermore, they urge schools to follow the AAP policy statement "Guidelines for Urgent Care in Schools," to remove all barriers to effective and timely treatment in emergencies, such as consent or payment issues, and suggest that other surrogates such as foster care families and state guardians develop policies for consenting to emergency medical care.15,16
Consent by Minors
The legal age defining a minor in most states in the United States has been lowered over the past three decades as a result of the passage of the 26th Amendment to the Constitution in 1971, which lowered the voting age from 21 years to 18 years. Most states have changed their statutory definition of majority to 18 years for most rights, with the exception of the right to purchase alcoholic beverages.3,17 Additionally, most states also have created special legal categories for minors who fulfill certain criteria of independence from their parents that permit them rights in excess of their more dependent peers. Legal categories, such as "emancipated minors" and "mature minors," have been so designated by many states.17,18
Emancipated minors are designated in many jurisdictions as minors viewed by law to be independent because of marriage, pregnancy, parenthood, military service, attending college, financial independence, disownment, or a judicial writ of emancipation. A number of states have enacted specific statutes granting emancipated minors the full right of consent for medical care. Most states recognize mature minors as those with the capacity to make health care decisions, whether or not they are emancipated. In these jurisdictions, adolescents of at least 14 years of age, who have the capacity to understand the nature of the proposed treatment and its risks, are permitted independent authority to consent if the medical treatment is of low risk.
Many states have enacted minor treatment statutes to clarify those situations in which parental consent is necessary and those in which it is not. Most minor treatment statutes permit adolescents older than age 14 to consent independently for treatment of pregnancy, birth control, sexually transmitted diseases, drug abuse, and alcohol abuse.18 Some states include abortion and treatment of psychiatric disorders in their minor treatment statutes. Obviously, it is essential for practicing physicians to be familiar with the relevant provisions of the statutes in the states in which they practice.
Although many states have enacted statutes for consent by minors for medical treatment, most do not have specific provisions for terminally ill minors independently to refuse life-sustaining therapy that they do not wish to receive. Despite the fact that nearly all jurisdictions have statutory provisions for the living will and durable power of attorney for health care (or other equivalent surrogate legislation), most do not address end-of-life issues by mature minors.19,20 Similarly, only a few high courts have ruled in cases permitting terminally ill mature minors the right to terminate life-sustaining therapy. One group advocates for a change in the law permitting mature minors to execute legal advance directives.19
A major unresolved issue is how to handle conflicts of consent and refusal of treatment between parents and children. The most common, serious conflict arises between the parents of a chronically ill or terminally ill older child or adolescent who wish continued treatment but the minor patient does not. Poignant reports have been published of terminally ill adolescents who chose to run away from home rather than face continued heroic treatment that they had unsuccessfully tried to refuse.21
Advance Directives in Pediatrics
Many adolescents with chronic medical conditions want to participate in the treatment decisions, especially decisions about life-sustaining medical interventions. Such chronic medical conditions often worsen over time (e.g., certain kinds to cancer, neuromuscular diseases, cystic fibrosis, acquired immunodeficiency syndrome, complicated types of heart disease). Having experienced years of physical and psychological suffering, multiple hospitalizations and numerous treatments, probably depression, and likely the deaths of several hospitalized friends with similar medical problems, these adolescent patients frequently are mature beyond their chronological years. They have had, at the very least, multiple opportunities to think about the inescapable anguish that characterizes their lives, the features of life that make it worth continuing, the benefits and challenges that accompany medical treatment, and prospect of death. At least some of these adolescents want to give voice to their values; provide directions for parents, physicians, and nurses regarding end-of-life care; and be assured that their wishes and preferences will be respected and carried out should their medical conditions deteriorate to the point that they will no longer be able to communicate their deeply felt views.
Advance directives, which were developed for this very purpose in adults, can help meet this goal for pediatric patients with chronic conditions. Enabling adolescent patients to communicate their wishes about treatment options through oral or written advance directives can provide ethical justification for such decisions, which should then provide a measure of legal protection of physicians.20 Pediatricians, family physicians, and others caring for such patients would be able to document the specific end-of-life treatment wishes of these patients and their conversations about the use or nonuse of life-sustaining treatment that had taken place with the patients and their parents. Though no jurisdiction gives statutory authority for minors to complete written advance directives, the unique situation of chronic care makes them important ethical tools to be considered by professional caregivers.
Overriding Parental Refusal of Treatment
Cases arise occasionally in which the patient is clearly too young to consent or refuse treatment but whose parents refuse life-sustaining therapies or curative therapies against strong recommendations of the physician. Some parents are motivated by compassion and strive to minimize any pain or suffering of their children. Other parents have unconventional ideas about treatment and insist on alternative treatments rather than scientific treatments, because they believe the alternative treatments are safer, more natural, and even more effective.3 Finally, some parents claim their religious beliefs preclude permitting appropriate medical treatment of their children. The religious issues are most difficult and often require judicial review or other external intervention.22,23
Parents or guardians who place their children at serious risks, for example, by refusing to permit a clinician to provide life-saving interventions to a child, may have their authority contested.13,23 Guardians have the authority to give consent because it is presumed they will promote the opportunities and well-being of their children. If they harm or endanger their minor children or do not take adequate means to prevent or minimize harms to them, however, clinicians should challenge parental authority. Guardians may lose custody of their children temporarily or permanently if they neglect, abuse, or exploit their children. Courts can order interventions if the child is assessed to be in danger in their care. It is not only health care professionals who have a responsibility to protect children from abuse and neglect, but also teachers, neighbors, or others in the community. Clinicians, however, often have special insights into how children are being treated, and thus, special responsibilities to notify the authorities when parental acts or omissions endanger their minor children.
Some older children refuse important interventions because they object to the results. Clinicians and parents may have a duty to override their wishes, although, as noted, their inappropriate requests should initiate support for the minor and discussions about why their wishes cannot be controlling.
Inappropriate Care Requests
Parents sometimes ask clinicians to provide treatments, which the physicians regard as entirely unreasonable, such as herbal medicines for the treatment of cancer, antibiotics for viral illnesses, or highly invasive procedures for minor illnesses. In some case, parents and others confuse their right to refuse treatment they do not regard as beneficial with a belief they have a right to demand certain treatments. Clinicians have a duty to refuse such requests that may harm based on the moral principle of nonmaleficence. In addition, they have a social duty to conserve resources and not provide costly, futile or burdensome interventions. Simply put, futile treatments are not useful or useful enough to justify the expense, potential harms, time, or energy.25-27
As a matter of professional integrity and personal morality, clinicians should refuse to provide costly, burdensome or useless interventions. The question of when treatments are futile may of course be disputed among families or among clinicians.
Minors also sometimes may make demands that are not appropriate. If an adolescent demands genetic testing for a late-onset illness such as Alzheimer’s disease, his preference should not prevail as it might for an adult since he may not have the maturity to consider his well-being and opportunities. Clinicians may have to override such inappropriate requests. They do not have a duty to provide medical interventions they regard to be wrong, ill-considered, or inappropriate.
Most, but not all, requests for futile interventions may be the result of miscommunication. Some of these are embedded in social, ethnic, or religious differences. In some cases, families have unrealistic expectations, believe "everything" must be done, or are waiting for a miracle. Guilt and denial also may play a role in these irrational or unreasonable requests. Clinicians should show great sensitivity and patience in helping families come to terms with a diagnosis or a prognosis. In some cases, families have a general mistrust of the health care system, which seems vindicated by an unexpected and bleak prognosis. Their request for futile treatment may be an expression of this mistrust. It is sometimes helpful to include someone whom they trust and can help them understand, such as a minister or family member with a health care background. In rare cases, the disagreement is truly a value disagreement where family members may, for example, see maintaining someone in a persistent vegetative state as a positive value while the clinicians do not. In these and other cases, doctors should maintain professional integrity and personal morality, but may find other clinicians willing to accept the families’ decisions. Substantial literature exists on how to respond to futile situations, when to override parental requests, and the dangers of using decisions about what treatments are futile as a mechanism for rationing health care.26-28 In general, however, for the practicing clinician, it is important to remember that most demands for futile interventions are likely to be the result of poor communication and inadequate understanding.
ED Utilization by Adolescents
Although EDs are used mostly for the treatment of illness or injury, they are used by many adolescents as a source of primary care.29-33 Nationally, as many as 1.5 million adolescents ages 10-18 years reported having no usual source of health care other than the ED.29,33 These adolescents were more likely to live in rural areas, be African American or male, and have fewer financial resources.29,31 Most troubling, these adolescents were much more likely to report engaging in risky behaviors such as alcohol and drug use, and almost twice as likely to report a history of abuse.29,31
Although increased use of drugs and alcohol puts adolescents at risk for serious injury and illness, ED visits rarely allow for the comprehensive counseling or follow-up necessary to effectively address these behaviors. In addition, the higher rate of sexual and physical abuse reported by adolescents who use the ED as their usual source of care suggests that many ED users have serious physical and psychological health needs that have not otherwise been met. Without intervention, these high-risk adolescents are more likely to become adults with poor health, addictions, and psychological distress.29
Study of adolescent ED utilization suggests that many ED visits are for non-urgent complaints.30-33 The National Hospital Ambulatory Medical Care Survey of adolescent ED utilization found that approximately one-half of ED visits were non-urgent.31 Unfortunately, a high percentage of these adolescent patients are not referred for follow-up care upon discharge from the ED.30 Follow-up with a primary care provider may help these patients establish a source of routine health care and define guidelines for health care access. Data suggest that a high percentage (up to 76%) of patients comply with the follow-up recommendations.34
Many of the discharge categories for adolescents using the ED and a high percentage of hospitalized patients included adolescents with chronic conditions.30,31 More than 30% of children in the United States younger than 18 years have one or more chronic health conditions.35 During emergency situations, these children and their families need access to health care providers with knowledge of the child’s condition, and they need collaboration among providers to manage the situation effectively.36 Unfortunately, children with chronic conditions may have unmet health care needs and their care frequently is fragmented and poorly coordinated.36-39
It is necessary for emergency medicine physicians to question adolescents about their usual source of care and provide referrals to health centers, physicians’ offices, or clinics that are more likely to provide longitudinal care, which is less costly.29 The American College of Emergency Physicians (ACEP) recommends that an appropriate health care professional be identified to provide follow-up care to patients after they are discharged.40 A system for integrating disenfranchised youth into the current system of primary care must be a priority. Only then will adolescents and health care providers shift from a model of crisis intervention to one of anticipatory guidance, screening, and primary prevention. Many guidelines for providing care to adolescents recommend that every adolescent should have an annual preventive care visit, including counseling and screening about risky and healthy behaviors.29,41 The AAP believes that the medical care of infants, children, and adolescents ideally should be accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. It should be delivered or directed by well-trained physicians who provide primary care and help to manage and facilitate essentially all aspects of pediatric care. The physician should be known to the child and family and should be able to develop a partnership of mutual responsibility and trust with them. These characteristics define the "medical home."42
The importance of confidentiality in medical practice has been acknowledged since ancient times.25,43 One reason for this is that respecting patients’ confidentiality generally promotes the moral principle of beneficence or their best interests. If patients are assured of confidentiality, they are more likely to be candid. Moreover, since privacy is what each of us wants for ourselves, then it is only just to extend it to others. In addition, it is fair to adopt this policy of respecting confidentiality since, in some sense, patients "own" the information about themselves and confidentiality honors their privacy and rights to control this information. If some information about the individual is released, such as a genotype for a late onset genetic disease, it has the potential to cause great harm through discrimination, labeling, or loss of self-esteem.25 The social utility of respecting patients’ confidentiality also is acknowledged in policies allowing physicians to avoid testifying about patients’ revelations to them in health care settings. Confidentiality may be important for minors as well as adults. Minors, for example, may seek medical care as a safe haven to express how they have been abused or exploited. Adolescents are more likely to seek health care and to disclose personal information when they believe that the information will be kept confidential.17,44
The clinician’s duty to maintain confidentiality, however, is not absolute. The resumption in favor of confidentiality can be overruled if there is greater value at stake or if there is a recognized exception. For example, an exception to the duty to maintain confidentiality is to protect a third party, as in child abuse. If clinicians suspect that someone is abusing a child, they have a legal and moral duty to override confidentiality because a greater value is at stake. In addition, there may be a duty to override confidentiality if there is a need to protect the patient from himself or herself; there may be such a duty if the minor is suicidal. In addition, there may be a duty to protect the community that is greater than the duty to maintain someone’s confidentiality, such as a duty to report communicable diseases or gunshot wounds, whether or not the patient wants them to be reported.
When trying to decide whether the duty to maintain confidentiality is the greater duty or not, certain features must be considered. The first is that in making the judgment about whether to overrule confidentiality one must consider the severity of the harm to be avoided and the probability of its occurrence. If there were a very small risk of a minor harm, the duty to maintain confidentiality would be secure. As the harm is greater and the likelihood higher, the duty to override confidentiality increases. Second, the most justifiable cases of overriding the duty of confidentiality for adults who are competent generally are to prevent harms, especially to third parties; this honors the principle of nonmaleficence. The duty to prevent harm generally is recognized as stronger than the duty of beneficence, since our notion of what we think benefits competent adults may be wrong, and acting on such impulses may be disrespectful of their autonomy. Clinicians would have, for example, a strong duty to override a competent parents’ confidentiality to prevent harm to a child who is endangered in the parents’ care.
Respect for children’s rights of confidentiality cannot be approached in the same way of those of fully competent adults. While their wishes and values are important, the best interest standard of the child shapes decision-making for children and thus is the primary consideration. Yet older children may have rights to privacy independent of their parents. In some cases clinicians may have a legal right to refuse to discuss with guardians intervention for the minor’s substance abuse, sexually transmitted disease, abortion, or contraception. In addition, it may be in the best interest of children or adolescents who are abused, neglected, or exploited, to be able to seek help without parental consent or involvement. Clinicians, of course, should explore the minor’s reasons for not wishing to involve parents. Sometimes the child’s concerns are not realistic, but in other cases the minor knows that parents would refuse to permit some interventions, such as allowing the provision of contraception. Since only one view can prevail where parents and children disagree, it is sometimes morally and legally justifiable to respect the child’s preference not to involve his or her parents.
Family Presence During Invasive Procedures and Resuscitation
The concept of allowing families in the treatment area during invasive procedures and resuscitation is rapidly growing and receiving more attention and acceptance.45-47 Health care organizations that traditionally have been bound by the practice of family exclusion are now being challenged by the increasing volume of research and public attention surrounding the family presence movement. Allowing family members to be present validates the unique personhood of the patient while recognizing his integral position within a larger family unit. The documented benefits have exceeded the perceived risks for families permitted to be present during resuscitation.45 Families and patients view family presence during resuscitation as a right. In addition, health care providers who initially resisted permitting families to attend resuscitation now are conceding to families this opportunity which, not surprisingly, is one that they would choose for themselves.
The family presence program will continue to evolve as new research is conducted and variables are examined to assess their impact on patients, families and health care providers. With increased knowledge and awareness of the benefits and limitations of family presence, the practice of allowing families in to comfort and support loved ones at the end of life can only enhance and strengthen the bond between patients and health care providers. Parents or family members often fail to ask if they can be present, but health care providers should offer the opportunity.45,48 When family members are present during an in-hospital resuscitation, one health care provider should remain with the family to answer questions, clarify information, and offer comfort.45
Termination of Resuscitation Efforts
Most children who experience a cardiac arrest will not survive. If a child fails to respond to at least two doses of epinephrine with a return of spontaneous circulation, the child is unlikely to survive.49,50 Current literature suggests that ED physicians often prolong resuscitation in a child much longer than they would in an adult and often beyond all hope of survival.51-55 Fear of breaking the news of the child’s death to the family is a common reason for prolonging resuscitation efforts in hopeless situations. This is a difficult and stressful task for physicians and, unfortunately, physicians receive little training for it.51 Several authors have described methods for teaching this skill to students and residents.51,54,55
Recommendations include breaking the news in a private room (if family members were not present for the resuscitation), briefly preparing oneself prior to entering the room (know the child’s name and what happened), and do not keep the family waiting. Once one enters the room, identify oneself, address both parents, use the patient’s name, and give a brief chronology of what has happened. Let them know everything was done, and if possible, that the child felt no pain. Many experts advise issuing a "warning shot," such as "I’m afraid I have bad news," prior to stating that the child has died.51 It is important to use the word "died" and not a euphemism. Reassure the family that it is not their fault and that they acted correctly. After telling the parents that their child has died, one should allow for an initial grief response. Things not to do include standing when delivering the news, referring to "the baby" or "it," using euphemisms or jargon, implying blame, sealing off the grief response, or forgetting other family members. Parents remember how the news was delivered better than any details of the treatment.51 They want to know that their child was cared for by someone both competent and caring.
After one has broken the news of a child’s death, giving the family the opportunity to view the child’s body (if they were not present for the resuscitation) is suggested by all experts. Follow-up contact should include giving the family the name and number of a staff member to contact with questions, contacting the patient’s primary care doctor and providing information on support groups. A follow-up phone call or letter from an ED staff member also can be helpful. The formation of a team in the ED to assist in handling these difficult events has been advocated by experts and found to be helpful to families.51,56
Relief of Pain and Suffering
Patients present to the ED with pain from a wide range of causes. Procedures that can cause pain and significant anxiety often are necessary during emergency care of children. These procedures are stressful for children, their parents, and their health care providers. Furthermore, inadequately treated pain produces physiologic and psychologic reactions that have acute and long-term consequences.57 The duty of physicians to relieve pain and suffering should be considered one of the highest obligations.58
Advantages of safe and effective management of pain and anxiety in the ED include facilitation of controlled accomplishment of evaluations and procedures, reduction of psychological trauma and its sequelae, reduction of stress for the health care provider and parents, improvement of parental acceptance of rendered care, and possibly, improvement of accurate evaluation of causes of pain. Unfortunately, it is well recognized that many patients do not receive adequate analgesia while in the ED.59 The Agency for Health Care Policy and Research has noted the inadequate treatment of pain by physicians and advocates for physicians to relieve pain and suffering in patients.60 ACEP also has advocated for the adequate use of sedation and analgesia in pediatric patients undergoing ED procedures.61 The 2001 Joint Commission on Accreditation of Healthcare Organizations emphasizes the assessment and management of a patient’s pain from the moment the patient enters the health care system through discharge.62,63
Although myths and barriers still exist regarding pediatric pain and pain management, there have been numerous research efforts to eradicate those misconceptions. It is now the responsibility of health care providers to educate themselves and their peers regarding the facts of pediatric pain management. It is encouraging to see health care organizations lead the effort to ensure that every pediatric patient has appropriate assessment and treatment of their pain. It is the health care community’s obligation to ensure we are meeting and exceeding these standards. Organizations must assess their ability to meet these standards and develop a multidisciplinary approach to pediatric pain management.
As the art and science of pediatric pain management continues to develop, there are some guidelines for current practice.62 They are as follows:
• All infants and children have the physiologic pathways necessary to experience pain.
• Health care providers must be knowledgeable of the behaviors infants and children exhibit to express pain.
• If parents are present, their opinion should be sought regarding their assessment of their child’s pain.
• Pain should be assessed and documented at regular intervals using valid and reliable measurement tools.
• A variety of nonpharmacologic and pharmacologic treatments should be utilized to achieve maximum pain relief.
• Parents and, when developmentally appropriate, the child must be educated on the pain management plan.
• The health care provider must be aware of his or her own perceptions, beliefs, and values concerning pain and the influence these exert on his or her practice.
Considerable literature exists about the use of sedation and analgesia for procedures performed in the acute setting.64,65 The goal of procedural sedation and analgesia is to match the patient and procedure with the most appropriate technique and agent that can provide the patient with the most humane and compassionate environment safely possible.58 The ability to provide safe, effective procedural sedation and analgesia is a necessary skill for physicians caring for the acutely ill or injured pediatric patient.
Emergency medicine has made great strides in managing acute pain and anxiety. The goal should always be to minimize the pain and emotional distress experienced by children present in the ED. The fulfillment of this goal will be a lasting contribution to the health and well-being of children.
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Physician CME Questions
1. Article 12 of the 1989 United Nations Convention on the Rights of the Child states that:
A. all children capable of expressing views have the right to do so freely in all matters of concern to them.
B. children’s views on matters of concern to them must prevail.
C. children have the right to express their views in all areas except in matters of medical care.
D. children have the right to designate guardians to act on their behalf.
2. A patient’s consent to a treatment or procedure becomes valid when:
A. adequate information has been provided to the patient by the practitioner to permit a rational consent or refusal.
B. the patient possesses the capacity to make medical decisions.
C. the treatment consent or refusal is made freely, without coercion by persons or agencies.
D. All of the above
3. When a minor is in immediate need of emergency medical treatment, the practitioner must wait to obtain parental consent before administering treatment.
4. When asked by parents to provide a pediatric patient with medical interventions the clinician regards to be wrong, ill-considered, or inappropriate, clinicians have a duty to comply.
5. In which example(s) is/are a patient’s right to confidentiality outweighed by a clinician’s duty to report?
A. When the clinician suspects child abuse
B. When the patient is suicidal
C. When the patient has suffered a gunshot wound
D. All of the above
6. A patient’s signature on a written consent form constitutes informed consent.
7. The process of medical surrogate decision-making includes which of the following standards?
A. The standard of expressed wishes
B. The standard of substituted judgment
C. The best interest standard
D. All of the above
8. How many adolescents, ages 10-18, are believed to use the ED as their usual source of health care?
A. as many as 1.5 million
B. more than 3 million
C. as many as 6 million
D. more than 8 million
9. According to the National Hospital Ambulatory Medical Care Survey of adolescent ED utilization, three-quarters of adolescents’ ED visits were urgent.
10. If a child in cardiac arrest fails to respond to at least two doses of epinephrine with a return of spontaneous circulation, he or she is unlikely to survive.