Redemption of Frequent Flier Miles: Excessive Use of Health Care?

Pediatric Pathways

Redemption of Frequent Flier Miles: Excessive Use of Health Care?

Author

American Family Children's Hospital Pediatric Pathways: Paul Neary, MD

Paul Neary, MD

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Child Protection

After reading this article and answering the review questions, the reader will be able to:

  1. Understand the difficulties of defining psychosocial phenomena and how those difficulties impact research, diagnosis and management of a condition
  2. Describe the circumstances that might suggest to the provider that a parent considers his or her child to be unusually vulnerable to illness or injury
  3. Describe communication techniques that might help parents to understand their child’s health condition more accurately and effectively

Case

A 4-year-old girl presents to a primary care provider’s office with a chief complaint of an “itchy bottom.” The provider notes that this is the fourth such appointment for the same complaint during the past six months.

The provider reviews the interim history with the patient’s mother. There has been no fever or other symptoms of systemic illness. The child does not complain of dysuria and the urine has not been discolored. The child does not strain to defecate. There has been no nausea, vomiting or respiratory symptoms.

The parents divorced one year ago. The provider does not know the circumstances of the divorce as the patient’s mother has not felt comfortable discussing this. Parents have joint custody of the child. The child spends an equal amount of time at the home of each parent with a consistent schedule that is adapted to changing circumstances when necessary. The child has her own bedroom at each parent’s home. There are no other siblings or pets in the home. There are no weapons in either home. Mother reports that neither parent smokes nor consumes alcohol. Neither parent uses other substances.

The child attends the same pre-school three days per week. Mother has no concerns about the pre-school and both parents have complete trust and faith in the day care provider. The child is continuously supervised by adults known to at least one of the parents. Mother reports that she has no concerns about inappropriate contact. Mother also reports that she asked father if he had any concerns about inappropriate contact and he has not. Mother reports that father was aware that mother was bringing the child to the appointment today, and that father was aware of the purpose of the appointment. The child has not made any spontaneous comments that would raise suspicion of inappropriate contact.

On exam, the vital signs, height and weight are normal. The child is not distressed nor otherwise fearful of the provider. The general physical exam is normal. Exam of the perianal area shows no excoriations (that might have resulted from scratching), fissures, erythema, nor abnormalities of anal sphincter tone. Exam of the genital area shows very mild erythema of the contacting surfaces of the labia minora and majora, normal hymen with no evidence of injury, vaginal discharge, nor other evidence of disease or injury.

The provider considers the differential diagnosis, which includes nonspecific vaginitis, Group A Streptococcal vaginitis, pinworm infestation, vaginal foreign body, irritation from soaps, perfumes or bubble bath and masturbation. The provider also considers the possibilities of inappropriate sexual contact including digital or foreign body fondling with or without clothing, vaginal penetration by a body part or a foreign object, or a sexually transmitted infection that might have complicated inappropriate contact.

The provider explains to mother that the exam is most consistent with nonspecific vaginitis, a common condition in prepubertal girls. The provider explains that incorrect hygiene might contribute to the development of this condition. The provider reviews hygiene guidelines in detail with mother. Mother reports that she still has the written hygiene guidelines that the provider gave to her several months ago and that father also has the guidelines.

At this point, the child spontaneously informs the provider that her father is getting married on Saturday. The child will be the flower girl at the wedding and the mother begins to weep. The provider gently asks mother why she is crying and she informs the provider that she was sexually assaulted as a child. Mother does not know why this is bothering her at this time. Mother informs the provider that she did not receive any treatment for trauma after the assault.

This case presents the difficulties of determining at what point the use of health care becomes excessive. In addition, this case raises questions about the point at which the parent’s concerns about the child’s vulnerability to illness or injury are not consistent with objective assessments of the child’s health status. Also, this case demonstrates the difficulty in knowing the background experiences that might be contributing to a family’s current emotional state.

Definitions

Psychosocial phenomena are especially difficult to define in a way that assures an optimum level of inter-observer reliability and low levels of prejudice. The absence of such definitions hinders research in these areas. The definition of vulnerable child syndrome is an example, as one observer’s over-protective parent may be another observer’s appropriately vigilant parent. Refinement and revision continue for this definition.

Current definitions focus upon the distorted perception of the parent regarding the susceptibility of the child to illness or injury. The parent perceives and believes that the child is unusually susceptible to adverse health events. This perception persists despite objective evidence of the well-being of the child. Reassurance regarding the child’s well-being from health care providers in whom the parent trusts does not seem to diminish this parental anxiety. The definition applies to clinical situations wherein the child is known to be well and not to be suffering from chronic illness.

Causes

Given the above definition, there are no factors intrinsic to the child’s personality or development that are known to consistently contribute to the distorted perception of the parent regarding the child’s vulnerability. There are concerns that certain health conditions (e.g., premature birth) are consistently associated with parental perceptions of vulnerability. Whether vulnerable child syndrome will occur varies from situation to situation. A parent might believe that one child is unusually vulnerable while the sibling is not despite similar health status. Different parents exposed to similar clinical situations might have very different perceptions of the vulnerability of the child subsequent to the child’s complete recovery. Other factors intrinsic to the parent (such as whether the parent is suffering from a mental health disorder) might contribute to the risk of vulnerable child syndrome.

Proposed causes focus upon the experiences of the parent. After enduring a child’s serious illness, injury or other potentially life-threatening event, the parent comes to believe that the child is vulnerable to recurrences of the affliction. In addition, the parent might believe that the child is at risk of sudden death. The misperceptions might result from a misinterpretation of instructions for caring for the child. The parent might underestimate his or her ability to carry out the instructions. The parent might misunderstand the health care providers’ description of the illness or injury, especially if the descriptions included jargon, were above the parent’s literacy, were unusually complicated, were not reviewed with sufficient time and detail or were not translated by an experienced interpreter if a language barrier was present. The parent might misunderstand the descriptions of the severity of the illness or injury.

Consequences

Vulnerable child syndrome is suspected to contribute to behavioral responses of the parent that negatively impact the child’s quality of life. These responses are typically maladaptive.

The parent might restrict the child’s physical exertion or restrict the child to indoor activities only. Healthy children need exercise and physical activity to remain healthy. Such restrictions, when not required by the child’s condition, increase the risk of adverse health consequences for the child. The parent might experience distorted expectations of the child’s development.

The parent might assess the child’s development to be at an earlier stage than as it is assessed by objective observers. The parent might experience reduced confidence in the child’s abilities.

The parent might become over-protective. Again, this term is difficult to define, especially in the context of the dangerous world in which we live. Protecting the child becomes maladaptive when it causes the parent to restrict the child from activities that many parents consider safe and reasonable when conducted with appropriate equipment and supervision. For example, learning to ride a bike with a helmet and adult assistance or participating in a swim team. Health care providers must be cautious when assessing whether a parent is being over-protective when the parent restricts the child from activities that many other parents might consider to be unreasonably dangerous. Football is one controversial example. One parent’s risky concussion-laden sport is another parent’s character-building adventure in teamwork.

The parent who views the child as unusually vulnerable might seek more health care for the child than is typically required for a child of the same age and health status. It is difficult to quantify this objectively. Although it might try the patience of health care providers, these encounters in which the parent is seeking reassurance do not necessarily harm the child. Potential or actual harm to the child might occur if the parent seeks or demands more medical examination and intervention than the health care provider deems reasonable. However, the assessment of what is reasonable can be affected by the experience and perspective of the health care provider. When we remember that we endeavor to educate parents about the variable presentation of illnesses in children and that we encourage parents to seek medical evaluation for their children when parents are uncertain about the condition of their ill child, then we can understand why parents might feel compelled to take the child to a health care provider to be examined for concerns that health care providers typically deem to be minor. “Fever phobia” is an example of this phenomenon. In addition, parents who have been chastised in the past for delays in seeking medical evaluation for their ill child might subsequently seek very prompt evaluation of their child for future illnesses. The parent fears both the illness and the health care provider’s judgment. The assessment of what constitutes excessive health care is fraught with subjectivity. Frequent encounters, however, may contribute to high health care costs.

The parent who considers the child to be at high risk of illness and injury might be afraid to discipline the child appropriately. Without the guidance of discipline, the child might exhibit oppositional behaviors. Some authors have observed that the child might begin to physically and verbally abuse the parent. The parent is unable to respond to such abuse for fear of exacerbating the perceived health condition. Data regarding the frequency of occurrence of this type of behavioral response in children is lacking, however.

There are concerns that these maladaptive responses might be transferred to the child. Under these circumstances, the child begins to accept and believe that she is much less healthy and able than her peers. The child begins to refrain from participation in physical activities, outdoor activities or competitive activities. The child might complain of vague symptoms that cannot be corroborated objectively (e.g., fatigue, headache, abdominal pain, dizziness). Difficulties with school avoidance might occur. The frequency of such complaints from the child in the context of vulnerable child syndrome is not known. Also unknown is whether this situation can progress to factitious complaints from the child.

Serious Consequences

There has not been sufficient research in this area to understand whether the vulnerable child syndrome progresses to Munchausen syndrome by proxy (also known as factitious disorder by proxy). In this condition, a parent or other caregiver fabricates symptoms of illness in the child. Typically the falsification of symptoms of illness is conducted in such a way so as to deceive the health care providers into believing that the child requires intensive medical interventions. In addition, the parent conducts the fabrication in a manner that obscures the deception from detection by the health care providers. The illness events typically occur only during times when the parent is alone with the child. Such events do not typically occur when health care providers are present. In the case of vulnerable child syndrome, the parent is suffering from anxiety regarding the child’s health status that is not consistent with objective assessments of the child’s health status. In the case of Munchausen syndrome by proxy, the parent is actively fabricating the illness. This may include actual harm to the child (e.g., tampering with an intravenous infusion when a child is hospitalized) or the potential for actual harm to the child (e.g., deceiving health care providers into ordering unnecessary tests or performing unnecessary procedures on the child). The two situations are very different.

Diagnosis

At present, there is no formal diagnosis of vulnerable child syndrome. There is no ICD-9 or ICD-10 code assigned to this disorder. One difficulty in assigning this diagnosis is that it applies more to the parent’s responses to the child’s health status than it does to the child or the child’s health condition.

The diagnosis may be considered under the following circumstances:

  1. The parent expresses concern repeatedly that the child is ill despite objective evidence that the child is healthy.
  2. These concerns persist despite careful examinations that confirm that the child is not ill and despite reassurance by the health care provider.
  3. The frequency of visits seems excessive to the health care provider. Remember the subjective component of this assessment.
  4. The parent expresses fears that something bad might happen to the child.
  5. The parent is restricting the child’s physical activities without just cause or recommendation from a health care provider.

Management

Upon detecting that a parent might be exhibiting behaviors consistent with vulnerable child syndrome, it might be best for the health care provider to initiate an open and honest discussion. The discussion may begin with an observation: “I’ve noticed that you have brought your daughter to the clinic several times recently with the same complaint.” This observation is presented along with objective evidence of the child’s well-being and reassurance. When presented in a non-confrontational manner, this may help the parent to disclose the anxiety that he or she is experiencing. The parent is more likely to share information regarding his or her own emotional state when it is safe and secure to do so.

Frequent visits with the health care provider may be necessary until the anxiety that the parent is experiencing begins to diminish. It might be helpful to ask the parent how frequently he or she wants the child to be examined. This might help to restore the parent’s confidence in his or her decision-making authority. This might also help to diminish the frequency of more expensive emergency department visits.

If the health care provider deems it to be appropriate, a discussion with the parent regarding the potential harmful effects of protracted exaggerated concerns about vulnerability might be helpful. It is possible that the parent is not aware that he or she is being perceived as exhibiting this distorted perception. The parent might not be aware that such distorted perceptions might begin to affect how the parent interacts with the child and that this change in interaction might have lasting effects upon the child. Understanding the effects of the behavior might help the parent to overcome the behavior.

The health care provider may screen the parents for symptoms of anxiety and depression. If there are concerns that the parent may be experiencing mental health problems, the health care provider may offer to refer the parent for counseling and evaluation by a psychiatrist. Family therapy may be indicated if conflict between the parents or other family members is contributing to the exaggerated perception of vulnerability for the child.

Prevention

Because the proposed causes of vulnerable child syndrome have not been confirmed sufficiently, it is unknown whether attempts to prevent the development of this condition can succeed. For some parents, the emotional response to enduring a child’s serious illness or injury is difficult to control. Other parents who possess great resiliency may endure the traumatic exposure with no apparent lasting effects. Proposed prevention measures have focused upon enhancing the communication between health care providers and parents, observing for cues to misinterpretation of information by parents and attentiveness to understanding the background emotional condition of the parents.

It is best for health care providers to refrain from using dramatic language to describe a child’s health condition. Dramatic descriptions might heighten parental anxiety and may interfere with a parent’s ability to receive and comprehend complex medical explanations. The best information that is available regarding a child’s condition may be presented to parents calmly in a quiet environment free from distraction. Information provided to parents during a tense situation (e.g., during a newborn resuscitation) should be succinct but sufficient so that the parents understand the reasons for the interventions that are being undertaken. When the crisis has ended, the situation and the interventions that occurred may be reviewed again with parents. To do so in a quiet environment free from the tension of the situation allows parents to ask questions regarding information that they did not understand. The calm environment also facilitates the ability of the health care provider to detect when parents are struggling to understand the sequence of events and the medical explanations. The provider is then able to more effectively correct misunderstandings before they become deeply entrenched.

If a language barrier exists, a skilled interpreter is necessary to assure proper communication. A telephone interpretation service may be used when an interpreter cannot be present. Federal law requires that health care systems that accept federal funds provide interpreters for patients and families at no cost to the family.

Because cultural differences may impede understanding of complex explanations, a person who has knowledge of both the family’s culture and the culture of the principal health care providers may help to assure good communication. In many cases, a skilled interpreter can function in this capacity.

Health care providers must refrain from the use of jargon. Explain all terms in language that the parents can understand (and that an interpreter can interpret). Medical terminology can overwhelm parents. Through advance preparation for the discussion, the health care provider can provide parents with written descriptions, pictures, diagrams and other information to facilitate comprehension.

A communication facilitator might help to assure good comprehension of complex medical explanations. A concerned family member who is skilled at remaining objective during difficult circumstances, or a colleague who is not involved in the medical care of the child and who has experience with mediation can assist with assuring the effectiveness of communication. The facilitator can take notes for the parents when they may have difficulty concentrating upon the discussion. These notes may be reviewed with the parents at a later time when parents have had an opportunity to consider what questions they might have about the child’s condition.

It is important to identify the common circumstances in which the delivery of health care information can become very complicated. Through advance preparation, parents may then be better able to receive and comprehend complex explanations should that become necessary. One example is the communication of the results of newborn screening blood tests. Newborn screening is performed every day. The tests screen for rare disorders that respond well to early diagnosis and prompt treatment. Initial positive results do not confirm that a newborn has a disorder. Confirmation is required. The disorders are all very complicated. It can be difficult for health care providers to remember all of the physiologic processes involved in these disorders. The initial preparation for parents to receive the results of this screening panel need not be overwhelming. Parents may be advised of the reasons for performing the newborn screen, when the test will be performed, how the test will be performed and when to expect the results to arrive. The most important information to convey to parents is that an initial positive result is not cause for alarm. The provider must assure that parents understand that an initial positive result requires further testing to confirm whether a newborn has a disorder. It is much easier for parents to accept and cope with the news about an initial positive newborn screening test result if they know in advance the significance of the test result and the next step in the process. Another example is the anticipated premature birth of a newborn. It is often difficult, if not impossible, to provide information regarding premature birth to parents at the time that a mother is suffering from preterm labor and the side effects of tocolytic medications. If there is an opportunity to speak with the parents during a relatively quiet time, an informative discussion regarding premature birth can help the parents know what to expect as the newborn recovers. Becoming informed can help the parents cope with the events that are likely to occur.

When a child has recovered completely from an illness or injury, it is helpful to inform the parents when no further complications or recurrences are expected. This may be incorporated into the discussion of the signs and symptoms of illness that parents should report to the provider. It is equally important to inform parents about that which should no longer cause concern as it is to inform about that which should cause concern.

When to Refer

Great caution is necessary when confronted with a possible case of Munchausen syndrome by proxy. There is great potential for error when attempting to make this diagnosis. Also, there are many legal complications to this diagnosis. When this diagnosis is suspected, consultation with a colleague with experience in the assessment for this diagnosis is recommended.

The assistance of an experienced colleague for communications that might be misunderstood can help to prevent such problems.

Areas for Further Research

  1. Whether there are factors intrinsic to the child (such as the child’s personality, specific behaviors or other factors) that consistently contribute to the parent’s distorted perception of the child’s health condition.
  2. Whether vulnerable child syndrome progresses to become Munchausen syndrome by proxy and the factors that might increase the risk of that progression.
  3. Confirmation of the effectiveness of communication techniques intended to prevent vulnerable child syndrome.

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References

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