Introduction
Medical child abuse (MCA) is defined as, “A child receiving unnecessary and harmful or potentially harmful medical care at the instigation of a caretaker.” MCA stands alongside physical abuse, psychological abuse, and sexual abuse within the landscape of child maltreatment. MCA shares many attributes with other forms of child maltreatment and has only a few distinguishing characteristics.
Traditionally child abuse is defined as an act of commission whereas child neglect results from acts of omission. The definition of medical neglect is a child under the care of an adult not being provided with needed medical care, whereas medical child abuse is a child receiving too much medical care. Knowing why the caretaker provides either too little or too much medical care, although important, is not required to determine that the child is being harmed. The relationship between the two types of maltreatment is comparable to the relationship between physical abuse and physical neglect, or psychological abuse and psychological neglect.
Similarities and Differences between Medical Child Abuse and Other Types of Child Abuse
Similar to physical, sexual, or psychological abuse, children can experience medical abuse in many different ways. For example, in physical abuse, a child can be struck with an object, thrown across the room, burned, or forced to stand in an uncomfortable position for an extended period. Similarly, a child can be sexually abused in a variety of ways. A child can be medically abused by being subjected to medical interventions, including unnecessary diagnostic tests and blood draws, repeated examinations, minor or major surgeries, or unnecessary medications, when medical indications do not exist to justify these treatments.
Also, in common with other forms of child abuse, MCA ranges from mild to severe. For example, at the mild end of the sexual abuse spectrum a child can be harmed by being exposed to unnecessary parental nudity. More severe abuse consists of exposure to pornography, or even more significantly, being forced to take part in pornography. A similar continuum exists for physical and psychological abuse. It is easy to understand that being subjected to unnecessary trips to the pediatrician falls on the mild end of the spectrum of medically abusive experiences—but having part of one’s pancreas removed based on false information provided by a caretaker represents a severe presentation.
With all forms of child abuse, at some point along the continuum there is a threshold beyond which the child is felt to be in need of protection from his or her caretaker. The threshold is determined by society, and varies over time as well as from community to community. For example, in the United States 50 years ago, disciplining a child with a stick or a belt was considered to be within the normal range of parental behavior, even if it resulted in damage to the skin. Today in most U.S. jurisdictions the production of skin lesions constitutes behavior that rises to the level of child abuse. In much of Europe today, laws prohibit any form of corporal punishment even if no physical damage to the skin is detected. In each of these situations the threshold for protection is different.
Because the child protection community has less experience in evaluating MCA, the threshold that constitutes a need for protection has not been clearly established. A child exposed to unnecessary major surgery would meet the standard for MCA, but less severe presentations might not. Nonetheless, MCA shares this important criterion with other forms of abuse.
Continuing the comparison with other abuse experiences, MCA victims have been found to have similar long-term psychological effects from their abuse. The most common psychological effects of sexual abuse are increased risk of depression, anxiety, relationship difficulties, and higher prevalence of drug and alcohol abuse. Preliminary evidence from victims of MCA shows a similar picture.
Perpetrators of the various forms of child abuse also share many characteristics. They typically disavow knowledge of how the child came to he harmed. They give many different explanations for the manifestations of the abuse in the child. For example, a caretaker of a child seen in the hospital with subdural hematomas, severe retinal hemorrhages, and encephalopathy might explain that the child rolled off a sofa onto a carpeted floor. And if that same parent had been observed by a third party violently shaking the infant, he might explain that he was afraid the child had choked and was performing the Heimlich maneuver. Perpetrators of sexual abuse notoriously deny any participation in the abuse or any ill intent if caught in the act. Similarly, parents who medically abuse their children typically deny any intent to harm their children by getting unnecessary medical care and state that their motivation was only to get their child help for a presumed illness. Another common characteristic is that perpetrators of physical, psychological, sexual, and medical abuse share is an unhappy childhood. ,
The primary difference between victims of medical abuse and the other types of abuse is the type of maltreatment they received. Physical abuse victims suffer physical consequences, including cuts, bruises, burns, broken bones, or death. Victims of psychological abuse experience humiliation, threats of abandonment, or blows to self-esteem. Medical abuse victims experience medical care that is damaging or potentially damaging to their health. While the prevalence of sexual abuse seems to be fairly constant between communities and across national borders, there is at least some evidence that medical abuse is more prevalent in developed countries with more medical resources.
Perpetrators of various types of abuse (physical, sexual, or medical) share many characteristics, but there is one difference. The literature notes a tendency for the perpetrator of MCA to express emotions in medical ways. They tend to have exposed themselves as well as their children to unnecessary medical care and to have multiple somatic complaints. They also are almost universally female as opposed to perpetrators of sexual abuse, who are almost all male.
Issues of Terminology
This definition of MCA replaces what has been referred to as Munchausen syndrome by proxy (MSBP). Although there has been difficulty with the MSBP concept for years, it is only recently that consensus has been building that we abandon the term in favor of a straightforward definition of abuse. The reason it has taken so long to clarify this question—over 30 years—is found in the involvement of the medical community in the expression of the abuse. The involvement of medical care providers as the instruments of abuse used by the parents to knowingly or unknowingly hurt the child puts the medical community in an uncomfortable position.
One of the two original case reports used to define MSBP was a child poisoned by his mother with salt. At the time the paper was published, the medical community’s understanding of physical abuse was quite unsophisticated. Still, there were a number of people writing about nonaccidental poisoning as a form of child abuse. For example, Dine and McGovern collected a series of 48 cases from their own experiences and from examples published in the literature. It stands to reason that parents who could severely beat their children might also poison them, and in doing so expose their children to unnecessary medical care. Yet, for the early proponents of MSBP, as with physicians today, the sticking point—the obstacle that prevented them from realizing what was happening and taking the necessary steps to protect the child—was the need to deal emotionally with their involvement in the production of morbidity.
Even today when a new audience hears a description of MCA, physicians invariably ask, “So why do the mothers do this?” Inducing an illness in a child, such as causing seizures by obstructing the airway, is an act of physical abuse. The same is true for poisoning a child with salt. However, the subsequent medical care given to a child with an induced seizure represents MCA—the child receives medical care that would have been unnecessary if the parent had not obstructed the airway and then given a false history about what happened to the child. If a child is treated for seemingly unexplained apnea with a bronchoscopy, that treatment is abusive. It is unnecessary and harmful or potentially harmful medical care perpetrated by the parent who induced the apnea (or gave a false history of seizure activity).
What the physicians are really asking is, “Why did this parent get me to give unnecessary medical care?” They do not ask this question about the perpetrators of sexual abuse because they are not the vectors through which the abuse is perpetrated. Being involved in bringing harm to a child is an emotionally painful experience that carries with it feelings of shame, guilt, sadness, and anger. The physician asking why the perpetrator did this is trying to understand his or her own unwitting complicity in exposing a child to potentially harmful medical care.
Unfortunately, the MSBP hypothesis has focused on the reasons why the parent put doctors in this painful position, rather than focusing on what the child is experiencing and on the need to put a halt to the unnecessary maltreatment. The other formulations offered in an attempt to deal with the shortcomings of MSBP such as pediatric condition falsification or induced illness in a child by a caretaker, although improvements over MSBP, suffer from the same loss of focus on the child. As some authors have written, we do not describe a child who is the victim of neglect as someone who has a parent with a syndrome known as “child neglect.” Physicians, rather than asking, “Why?” should be asking, “What?” or “How?” They should explore what happened to the child and how they ended up giving care that was not indicated. Although several reasons surely exist, one that seems to be frequently present is that the physician proceeded with medical treatment based on false information provided by the caretaker. In one study of victims of MCA, parents exaggerated existing symptoms in 89.7% of the cases and fabricated nonexistent symptoms in 73.6%.
When false information is inserted into the medical decision-making process, the decisions that result are contaminated and potentially harmful. Numerous anecdotal accounts exist in the literature of disastrous outcomes following a caretaker providing false information. As an example, a child received an unnecessary small bowel transplant based on parent report of symptoms that in retrospect turned out not to be accurate.
The discussion in the literature regarding MSBP has focused on these extreme cases. As we reconceptualize a child receiving unnecessary and harmful or potentially harmful medical care as a victim of MCA, diagnosing and responding to this form of child maltreatment can be consistent with our thinking about other forms of child abuse. With this new approach, we will see examples that are not so extreme (compared with, say, a child getting an unnecessary bowel transplant) but might still be far enough along on the spectrum of clinical presentations that protection from a caretaker’s behavior is indicated.
Treatment of Medical Child Abuse
As with other forms of child abuse, management of MCA proceeds in five steps. The steps are: (1) identify the abuse, (2) stop the abuse, (3) make sure the abuse does not recur, (4) repair the physical and psychological damage experienced by the child, and (5) do all this in the least restrictive manner that ensures the safety of the child.
Identifying the Abuse
The first and most important step is to identify that abuse is occurring. Because most child abuse takes place in private, it can take considerable time for maltreatment to come to the attention of the broader community. Incest, or intrafamilial sexual abuse, can continue for many years before it comes to the attention of someone in a position to bring it to a halt. A child can be the victim of psychological, physical, or medical abuse for years as well.
With medical abuse the process of identification involves a careful examination of the medical care the child has received. Although family members or school personnel might question whether a child has been receiving inappropriate medical care, medical caregivers are in the best position to notice a child getting too much treatment. In the past when working within the framework of MSBP (or one of its other names), there was a tendency to examine the emotional makeup of the caregiver to see if she might “fit the profile.” However, because receiving too much medical care constitutes MCA, the way to identify it is to determine if the medical care received was appropriate. Are there signs and symptoms of illness, independent of the possibly inaccurate history received from the parent, that supported the need for care?
In other forms of child abuse, the diagnosis is made by carefully comparing the history provided by the caretaker with the examination of the child. The same is true for MCA. A child reported to have vomited constantly over the past 24 hours would be expected to look quite ill, to be dehydrated, and would be expected to continue vomiting in the emergency department or in the hospital. If, instead, the child does not look ill, is well hydrated, and is not seen to vomit by medical personnel, a physician would be advised to question the history given and withhold aggressive treatment until objective signs and symptoms indicate a need.
This example represents a description of good medical practice. However, children who have been medically abused have caretakers who manage to persuade good physicians to give treatment in just such circumstances. Good medical practice represents primary prevention of MCA. Nevertheless, characteristics of good physicians, such as empathy, dedication to patients and their parents, and a trusting nature, can render them vulnerable to parents who, for whatever reason, insist that their child is ill and requires medical care. Often the only source of information about the child’s symptoms and status is from the primary caretaker and a life-or-death decision must be made based on the information the caretaker provides.
In extreme cases of MCA, a child might have been receiving unnecessary, harmful medical care for years, including receiving surgery for which there was little justification. In these situations the identification of the abuse might be the result of an intense medical record review by a child abuse pediatrician. Sanders and Bursch give an excellent description of the process. There has been discussion in the literature about whether MCA can be identified by nonmedical personnel. Little debate should exist about this as long as it is understood that the diagnosis is made based on the appropriateness of the medical care received. Anyone with sufficient medical knowledge to determine if the care received was indicated based on the signs and symptoms available to the treating physician is qualified to make the diagnosis of MCA.
The role of covert video surveillance (CVS) in the identification of MCA has been the subject of considerable controversy as well. In order to conduct CVS an individual or a hospital must position video cameras to observe a mother taking care of her child in a controlled setting without her knowledge. The resulting evidence, if it shows a parent smothering or otherwise physically abusing her child, can be quite convincing in a court proceeding and can aide in successful prosecution of the parent. Critics have argued that subjecting a parent to video taping without knowledge or consent violates informed consent stipulations regarding research, is tantamount to entrapment, or violates the parent’s right to privacy. , Supporters of CVS say that the right of the child to be safe and healthy takes precedence over the rights of the parent, and that CVS is a tested diagnostic procedure and entirely ethical. Hall has suggested that every children’s hospital should be capable of CVS because of its ability to prove or disprove abuse.
Although the usefulness of CVS as a diagnostic technique is clear in identifying physical abuse, and it is relatively easy to defend its ethical use, in no other form of child abuse would one expect such overwhelming evidence before proceeding to put in place protective measures. One would not send a child thought to be sexually abused to the perpetrator’s apartment with a tape recorder in her pocket.
In summary, to accomplish the first step in the management of MCA (i.e., to identify that it is occurring), one must perceive that the medical care received by the child might not be indicated. This realization usually proceeds from the observation that the history given does not match the clinical picture.
Stopping the Abuse
The second step in the treatment of child abuse is to stop the caretaker’s abusive behavior once it has been identified. The unique feature involved in stopping MCA is the cessation of the harmful medical care. The previous care plan for the child must be reevaluated. Unnecessary care must be eliminated and needed care reinstituted. This is easier said than done. The medical care might be the result of one physician’s actions based on false information provided by the caretaker. The more common situation involves care given by a system of caregivers that might include dozens of doctors, nurses, and ancillary treatment personnel. Bringing care to a halt requires the treatment team to call a “time out” in the care, just as a surgical team might do before undertaking a procedure, to make sure that moving forward is appropriate. The medical care team then needs to review the available information, obtain whatever additional tests might inform the new course of treatment, and then institute the new care plan. Some would argue that getting all the medical care providers to reach consensus on changing the plan of care is the most difficult aspect of MCA treatment.
Putting the new plan in place requires informing the caregiver and other family members of the plan, its reasons, and why the previous treatment was inappropriate. Many times this can be done expeditiously, particularly if the abuse is of the mild variety that might not even require community-based intervention. It is at this point, however, when the abuse is called to a halt, that the caregiver who has initiated the harmful medical care might act in such a way as to require legal intervention to stop the unnecessary care.
Identifying the abuse can be done without the cooperation of the abuser. Stopping it and providing for the ongoing safety of the child requires either the cooperation of the perpetrator or an intervention by community resources that ensure the abuse will not continue or be reintroduced. This is the case with MCA as it is with any other form of child maltreatment.
The motivation of the perpetrator also becomes paramount at this point. When determining if a child can remain or be returned to an environment in which he or she was previously harmed, one would like to know what the perpetrator was thinking when the harm was occurring. The motivation of the perpetrator of MCA is just as important as the motivation of someone harming their child by beating them, emotionally excoriating them, or exposing them to sexual abuse. The motivation in each case may be different, but understanding what the person was thinking is essential to making decisions about the ongoing safety of the child victim.
Making Sure the Abuse Does Not Recur
Providing for the ongoing safety of a victim of MCA requires that the child live in a family environment dedicated to the new medical treatment plan that does not allow for harmful, unnecessary treatment. This might mean excluding the parent, usually a mother, from making medical decisions, or in some cases, from even having contact with the child. However, if she can see the advantge of working with the medical team for the benefit of her child, and safeguards are in place that keep old patterns of health care abuse from reemerging, then as with other forms of abuse, one might opt for asserting family preservation as a unifying concept in ongoing family health. The determining factors include the severity of the MCA experienced by the child as well as the ability of the perpetrator to admit her contribution in the harm and her work to prevent it in the future. This may turn out to be relatively easy or completely impossible, and steps need to be taken by the child welfare community as would occur with other children when safety cannot be ensured in any other way.
Repair the Physical and Psychological Damage Experienced by the Child
Treatment of the physical effects of MCA is dependent on the types of medical care received. A child who has received intravenous immunoglobulin (IVIG) unnecessarily can simply have it stopped and the central line through which it was administered surgically removed. Similarly, children who have received a colostomy can sometimes have it surgically repaired. For some, however, the damage is permanent. In general, stopping the most invasive and dangerous treatments should be done first, followed by less worrisome treatment. For example, if a child has an unnecessary implanted venous access port or gastric tube, removing these would be urgent. After this is done, less intrusive treatments and less dangerous medications can be stopped.
Psychological treatment of MCA victims parallels treatment offered to victims of other forms of child abuse. Common symptom presentations include posttraumatic stress disorder and the associated symptoms of depression and anxiety. A central feature of child abuse treatment is the need to restore trust in caregivers and others expected to keep children safe from harm. Bryk gives a first-hand account about the psychological tasks facing a long-term victim of MCA.
A special feature of MCA treatment is the need to identify cognitive distortions associated with having been told for many years that one is ill and in need of medical treatment when this is not, in fact, the case. Libow interviewed 10 adults victimized in childhood and described their social adaptation and attitudes to getting medical care as adults. Others have documented that being a victim of MCA might presage patterns of factitious medical utilization in adulthood as teenagers incorporate inappropriate health care–seeking behaviors into their lives.
Preserve the Family if the Safety of the Child Can Be Ensured
Preserving the family is a worthwhile goal. However, as with other forms of child abuse, it is never appropriate to sacrifice the safety of a child simply to allow family members to continue to live under one roof. Having said this, Berg and Jones described a series of families where children had experienced severe medical abuse and were subsequently reintegrated into their families of origin. They concluded that, in carefully selected situations, families undergoing intense treatment could experience successful family reunification.
The Multidisciplinary Team
As with other forms of child abuse, the availability of a trained child abuse pediatrician and a hospital-based multidisciplinary child protection team (MDT) is an enormous advantage. Physicians attempting to treat MCA without assistance can find themselves struggling to deal with their own emotional issues while attempting to negotiate a new treatment contract with the family. It is useful to consult with someone with prior experience with child abuse recognition and treatment in general and MCA in particular.
The MDT will find it helpful to familiarize itself with the diagnosis and treatment of MCA in the same way it diagnoses and treats other forms of child abuse. Because most jurisdictions have experience only with extreme cases and possibly not even one of these, team members should be encouraged to discuss situations that might not meet criteria for protection. Most pediatricians have a small percentage of patients and their parents where MCA is a possibility. In this way the MDT can be prepared when the situation arises in which a child might surpass the threshold of concern and need protection.
Legal Issues
The MCA formulation has been used successfully in the prosecution of several mothers in criminal court. By avoiding discussion of the motivation of the perpetrator, judges and juries are left with the facts of the case and make their decision about whether the child was harmed by the unnecessary medical care brought about by the parent. Trent describes in detail the process of bringing a parent to justice for precipitating unnecessary surgery in her children.
Even though “medical neglect” carries no implication that the medical care team is neglecting the needs of the child, some have objected that “medical abuse” might refer to physicians abusing children. Having the definition of MCA include the specific stipulation that the unnecessary care is delivered “at the instigation of the caretaker” has not prevented physicians from feeling they are being singled out for criticism. There is a term for harmful medical care instigated by a physician: malpractice . The medical care involved in MCA is care offered in good faith, by well-meaning, competent physicians who are giving treatment that is consistent with the community standard of care. Other physicians in the community, given the same set of circumstances, would do essentially the same thing. The medical care offered that is determined to be harmful is inappropriate because the information upon which it was based is false and the person providing that false information carries the responsibility.
Prevention of Medical Child Abuse
Physicians have a responsibility to work to minimize unnecessary medical treatment. They provide medical care in partnership with the patient and the patient’s caretakers. That partnership operates with some basic assumptions that include trust between the parties. One of the responsibilities of the physician is to make a judgment about whether the trust is justified. The physician, in addition to paying attention to the nature of medical information provided by parents, and practicing good medicine, is also charged with providing only necessary care.
A number of forces promote excessive medical care use, all of which drive up the cost of medical care and decrease the availability of services. The fear of being sued for malpractice is one such force. According to one estimate, the cost of defensive medicine (ordering tests that might not otherwise be indicated, primarily to guard against future consideration that every possibility was explored) is 5% to 9% of the total health care cost in the United States.
Another factor in overutilization of medical treatment is the availability of ever-increasing technical advances in diagnostic procedures and treatments. Although conventional wisdom is that more advanced medical care is better, there is growing evidence that new treatments might in some cases make things worse. , A third consideration in the growth in medical care utilization is the tendency to involve patients in choosing the course of treatment to a degree not typical several decades ago. Drug manufacturers advertise prescription medications directly to the public with an admonition to “Ask your doctor!” Doctors involve patients in more choices. Experts in medical ethics debate whether it is ethical to allow a patient to demand a medical test that has little chance in enhancing a course of treatment.
Against this backdrop a small percentage of parents demand treatment for their children and provide justification for that treatment in the form of false information that can persuade a physician to prescribe unnecessary and harmful or potentially harmful medical care. It is important that physicians recognize this possibility and take steps to prevent it from occurring. No other form of child maltreatment is as preventable as MCA. As the medical care community grows more sophisticated in recognizing when children are receiving unnecessary and harmful or potentially harmful medical care, and responds to this awareness appropriately, one can only hope that fewer parents will be able to mistreat their children in the medical environment.
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