#childsafety | Overmedicalization in Children with Medical Complexity | #parenting | #parenting | #kids

Children with medical complexity (CMC) are a heterogenous patient population, defined as having substantial health care needs, functional limitations, high health care resource utilization, and chronic conditions associated with medical fragility.

CMC represent one-third of all child health care spending, despite comprising only a small percentage of pediatric patients.

Most care received by CMC tends to overmedicalize them and under-support their families.

Specific child, parent/caregiver, provider, and health system characteristics contribute to an increased risk of overmedicalization (OM). This article explores factors contributing to OM and provides strategies for recognizing, confronting, and minimizing OM. Additionally, the authors focus on the diagnostic dilemmas and challenges that arise specifically when medical child abuse (MCA) is suspected, recognizing the ambiguity inherent in many of these cases given overlapping features of CMC and MCA populations,

as well as the devastating consequences of underdiagnosis or overdiagnosis of child abuse.


OM is the delivery of unnecessary and potentially harmful medical care and results from the interactions and reciprocal relationships between the child/patient, parent/caregiver, and provider/health system triad. OM is typically defined in terms of over-use, which includes both overtreatment and over-testing, and over-diagnosis, in which diagnostic labels are applied based solely on abnormal laboratory or imaging findings, rather than on the presence of signs, symptoms, or evidence of functional consequence.4,5 A third form of OM especially pertinent for CMC is overemphasis, in which there is an ever-present focus on the child’s medical conditions and crisis management, to the neglect of considering quality of life, strengths, functionality, and well-being. OM often stems from conceptualizing a patient’s problems strictly within a biomedical model of disease when those problems may be more holistically addressed within a biopsychosocial model of well-being.6 An example of OM in the care of CMC includes the initiation of complicated medication regimens to address vague symptoms often with absent evidence of pathophysiology. If symptoms stabilize or improve on these medication regimens, there may be reluctance or forgetfulness on the part of providers or parents to wean medications to determine which, if any, were helpful. The true incidence of OM in CMC is not known and difficult to determine but is likely high as exemplified by the efforts of a complex care program that successfully weaned medications from many children after the initiation of specified protocols.5

MCA is a specific diagnosis related to OM that is defined as maltreatment that occurs when a child has received unnecessary and harmful—or potentially harmful—medical care because of a caregiver’s exaggeration, fabrication, or induction of symptoms.7 Varying terms and definitions, including Munchausen syndrome by proxy (MSBP), have led to confusion regarding essential features and proper diagnosis of MCA, particularly with respect to whether caregiver intent should factor into diagnosis, as is often emphasized in discussions of MSBP.8 MCA, in contrast to MSBP, focuses on the child’s risk of harm and exposure to abuse, rather than on perpetrator motivation; knowing caretaker motivation, although important for treatment and prognosis, is not necessary to identify the risk or actuality of harm to the child.7 The incidence of MCA, often cited as 1 to 2 per 100,000 children, likely reflects only the most severe cases, as many instances go unrecognized and underreported.9,10 Although most victims are infants and toddlers, 25% are older children, which can prove diagnostically challenging, in that older children may at first be passively harmed but then later move on to actively fabricate their own illness.11 The risk of morbidity and mortality is high10 and harm to the child extends beyond physical trauma to include social isolation, missed education, and psychological trauma.10 Most offenders are mothers; however, other caretakers including grandparents and parental partners have been described.10 Diagnostic delays are common, with an average of approximately 2 years from symptom presentation to diagnosis of MCA, often secondary to MCA not being considered in the differential diagnosis.12 Similar to CMC, children who are victims of MCA frequently see multiple subspecialists, involving multiple organ systems8 and have ongoing relentless symptoms. Up to 30% of patients diagnosed with MCA also have an underlying true diagnosis, underscoring the observation that true illness does not rule out the possibility of MCA.12 The differential diagnosis of MCA includes an undiagnosed medical condition, parental anxiety, vulnerable child syndrome, or psychogenic illness/somatization disorder by the child.7 It is the presence of parental/caregiver exaggeration, fabrication, or induction of symptoms that helps distinguish MCA from other causes of OM.

Risk Factors of Overmedicalization and Medical Child Abuse in CMC

The heightened risk of OM for CMC can broadly be conceptualized as being related to factors intrinsic to the child, related to the parent/caregiver, or related to the provider/health care system. Often a complex interplay between these three factors is a contributor. Culture, social norms, and economic and industry factors also likely contribute to OM but are beyond the scope of this article.13,14

Child-Related Risk Factors

Deficits in communication or behavior, whether associated with developmental stage or developmental impairment, leave providers reliant on caregiver interpretation of nonverbal information and other signs and symptoms to establish both the patient’s functional baseline as well as when illness has resulted in a deviation from that baseline. This reliance on the interpretation of subjective information can lead to uncertainty and the potential for overaction. In children with rare or un-diagnosed disease or for those who have neurological impairments such that they manifest common illnesses or concerns in unusual ways, the absence of established diagnostic and therapeutic modalities can lead to potentially unproductive or even harmful diagnostic procedures or medication trials. Regardless of the underlying diagnosis, the presence of medical technology or polypharmacy can lead to iatrogenesis.6 Finally, the mental health consequences of being a CMC, including anxiety and posttraumatic stress due to medical interventions/interactions, may lead to somatic symptoms or other physical displays of emotional or psychological stress that may be misinterpreted, increasing the risk of further OM.

Parent/Caregiver Risk Factors

Compared to parents of children who are typically developing, parents of CMC have increased roles in medical management and illness triaging.15 However, despite this increased role, parental caregivers of CMC can display the same spectrum of health–care-seeking behaviors from medical neglect, to appropriate care-seeking, to MCA as compared to parents of children who are typically developing.5,16 These health–care-seeking behaviors are influenced by a parent’s unique relationships, past and current experiences, stressors, support systems, and, when present, mental health issues.

Unique Stressors and Burdens Associated with Parental Caregiving for a CMC

For many parents, providing care for a child with medical issues becomes a core tenet of their identity; they learn to cope emotionally and practically and suffer emotional distresses with diagnosis and fluctuations in clinical status.17 Often parents/caregivers join disease or location-specific support groups and use social media as a form of social support. Whereas these support groups can improve family access to services and decrease levels of anxiety, stress, and isolation,15 increased use of advice from nonfamily caregivers has been shown to increase health–care-seeking behaviors18 and place pressure on providers to pursue interventions when they would not have otherwise.19 Social isolation and a feeling of shared traumatic experience may lead some caregivers to form close personal relationships outside the norm with medical providers and staff. Professional boundaries can be blurred leading to enmeshment that can delay recognition of OM and MCA.5 Although most parents adapt and cope with a child with chronic illnesses appropriately,17 some do so inappropriately; prompt recognition and management of parent/care-giver risk factors for OM can improve child and family health and may prevent the occurrence of MCA.9

Parents of CMC report increased family, financial, and personal stressors related to their role as nonprofessional caregivers to their child, assuming responsibilities above and beyond the traditional parenting role.15,20 Despite the vast and growing recognition of these omnipresent stressors and high rates of unmet needs including respite care, in home professional services, and insurance coverage, the current social and health care systems do not provide adequate support, placing parents at risk of burn out and children at risk of harm.20,21 Unresolved parental stress and traumatic experiences are felt to be a motivator for parental OM behaviors22 and have been associated with increased health–care-seeking behaviors, including numerous consultation requests, readmissions, and laboratory screenings.17,23,24

In the authors’ experiences, increased caregiver burden and stress have directly contributed to OM. Families of children with medical technology such as tracheostomies or central lines have relayed feeling the need to delay removal of such devices given the likelihood that they will no longer qualify for the home nursing that had helped offset some of their caregiver burden. Other families expressed reluctance to remove gastrostomy tubes given the relative ease with which medication and hydration may be given. Lack of identified community-based resources for respite care has driven some families to use acute health care facilities solely for respite, risking nosocomial infection and iatrogenic medication errors. Families that have developed a routine or pattern at home have been reluctant to wean medications or treatments, as the prospect of altering a well-defined routine may prove daunting, or daily care requirements may not leave sufficient time to assess and report back on the response to such weans.

Mental Health Issues

Parents of CMC have an increased risk of mental health issues, especially depression, and anxiety.25,26 Symptoms of posttraumatic stress disorder (PTSD), especially arousal symptoms, are also common in some cohorts of parents with rates up to 50% reported.27 Whereas some parents have underlying mental health issues that predate their child, a parent’s entire world is often deeply affected when their child has an acute critical illness or is diagnosed with chronic disease. Parental psychological dysfunction, such as high anxiety and PTSD, has been associated with increased child health care use, worse disease management, perceiving a child to be more ill then they are, difficulty understanding medical guidelines, and inaccurate transformation of information.26,28,29

Other parental mental health issues such as somatic disorders, catastrophizing, and personality disorders can affect risk of OM. Additionally, mothers who perpetrate MCA have increased rates of somatic disorders, factious disorders, personality disorders, and depression (14%).9 A history of pathologic lying, trauma, and abuse is also common among perpetrators of MCA. Determining the impact of parental mental health, especially parental anxiety, on child OM, and specifically whether this does or does not constitute MCA is extremely nuanced.

Provider and Health Care System-Related Risk Factors

Various provider factors may also contribute to the risk of OM.13,30 Several of these factors relate to the diagnostic process, and in particular, diagnostic uncertainty.

Provider response to diagnostic uncertainty is individualized and entails cognitive, emotional, and ethical considerations. When patient presentations are complex, multisystem, or evolving, as is often the case with CMC, commonly used and taught approaches to diagnosis, such as pattern recognition, can fail.31 Cognitive biases that lead providers to accept the first plausible diagnosis (premature closure) or “lock in” (anchoring) on a diagnosis without adjusting when new information arises can result in the perpetuation of incorrect diagnostic labels.31 Such errors can lead to unnecessary therapeutic plans and subsequently to OM. The lack of response to a particular intervention, iatrogenic symptoms, and subjective perception that interventions such as parenteral fluid administration, supplemental oxygen, or medications are beneficial to a patient may further confound diagnosis. Over time, OM may continue as lines blur as to the indication for a particular kind of intervention. Creeping migration in the functional baseline of the patient and in the number and types of interventions used to supposedly maintain that baseline makes evaluating the initial diagnosis even more difficult.

Conversely, in the face of uncertainty and complex symptoms the cognitive biases of some providers may lead to delayed diagnosis and prolonged evaluations,32 resulting from the perception that a patient has a different or additional condition underlying their symptoms than the previously established diagnoses. Under these circumstances, CMC may fail to receive appropriate treatment for their underlying condition or undergo extensive testing because providers continue to entertain the possibility that their patient has an alternate explanation for their symptoms.

Provider personality, experience, training, and workload also contribute to risk of OM including the provider’s individual tolerance for uncertainty and the manner in which the provider conceptualizes disease, either from a biomedical or a psychosocial framework.32 Systems-based factors leading to OM include the siloed nature of health care, social and education services,2 reliance on multiple subspecialty consultations without a designated primary medical provider coordinating care, care that is fragmented among providers and locations, and a system that focuses primarily on diagnosis and treatment.30 These factors often produce a fragmented concept of health and illness in CMC, which compounds diagnostic and therapeutic uncertainty at a system level. Electronic medical records, with easy access to “copy forward” functionality, cumbersome searching and sorting capabilities, generalized (rather than individualized) alerts for testing recommendations, and forced use of specific diagnostic codes can lead to perpetuation of incorrect diagnosis and OM.

Prominent examples in CMC of provider/health system-associated OM include the incorrect subjective diagnoses of mitochondrial disorders, despite the lack of objective findings to support these diagnostic labels, or even in the face of contradictory evidence. In one case of a child with tiredness and distractibility, a diagnosis of mitochondrial disease was perpetuated by family and in the medical charting for several years, leading not only to unnecessary interventions including overnight oxygen, but also to a significantly delayed sleep apnea diagnosis, which was likely the true cause of the child’s fatiguability. An example of siloed care leading to OM includes a toddler with static encephalopathy whose scheduled tracheostomy was able to be canceled after several of his sedating medications, prescribed initially during a critical illness hospitalization and without a plan for adequate outpatient follow-up, were weaned by his outpatient physician.

Presentation and Diagnostic Evaluation

The first step in recognizing all forms of OM in clinical practice is awareness that the issue exists and is likely highly prevalent in CMC. Likewise, as the diversity of presentations for MCA is greater than possibly any other diagnosis in pediatrics MCA should be included in the differential of new or ongoing symptoms, especially for perplexing cases. Sorting through the differential diagnosis is complex, difficult for a single provider to do in isolation, and requires a thoughtful multidisciplinary approach by the multidisciplinary team (MDT) that often includes child abuse, mental health, and disease and complex care experts. Evaluating for OM in CMC is time consuming upfront given long and complicated histories, multiple involved providers and nonmedical supports, and care at potentially numerous institutions. However, once an evaluation has begun, the MDT formed, and a plan initiated, ongoing discussions and care are often streamlined. Recognition and addressing OM in CMC is unlikely to occur in a single visit but rather through multiple interactions with the child and family. However, it is important to remember that if safety is a concern, immediate action is required.3

Evaluating for OM and MCA in CMC

The authors propose the following guide for evaluating and identifying OM and in select cases, MCA, recognizing that each case has unique and specific circumstances. Four main branch points are highlighted, with suggested questions (Tables 1–3) that can be used to foster discussion and offer context when considering OM and MCA in the setting of CMC (Figure 1). The evaluation begins with a clinical encounter, which can be a part of a routine visit, an acute visit, new consultation, change in providers, hospitalization, or concern from another source. This is ideally followed by an MDT meeting, which is the most efficient and comprehensive mechanism for creating a plan for the child, yet logistically can present a challenge. The goal of the meeting is to carefully review the history, including a detailed list of interfaces with the medical team, signs and symptoms reported by the caregiver, objective findings, past diagnoses, testing/radiographic results, prior treatments, and response to treatment. The concern for OM and/or MCA should be transparent to the MDT. Attendees can include but are not limited to the primary provider, complex care team, child abuse team (CAT), involved sub-specialists, psychiatry/psychology, and representatives from nursing staff, social work, and educational staff. The degree of suspicion may also warrant attendance or consultation with risk management or the hospital legal team. Careful attention should be paid to the differential diagnosis and the unique risk factors for OM. Although consensus among providers is the ultimate goal, it is critical to note that some disagreement is common in such evaluations, further warranting a thoughtful and thorough approach.

Table 1.

Is There Potential for a Child Who Is Overmedicalized?

Is There Suspicion for MCA?

Table 2.

Is There Suspicion for MCA?

Is There an Immediate Safety Risk to the Child?a

Table 3.

Is There an Immediate Safety Risk to the Child?

Algorithm for evaluating for suspected overmedicalization and medical child abuse in children with medical complexity. Adapted from Petska et al.,3 Marty et al.,5 and Bass and Galser.9 CMC, children with medical complexity; MCA, medical child abuse; CPS, child protective services; PCP, primary care provider; MDT, multidisciplinary team; RN, registered nurse.

Figure 1.

Algorithm for evaluating for suspected overmedicalization and medical child abuse in children with medical complexity. Adapted from Petska et al.,3 Marty et al.,5 and Bass and Galser.9 CMC, children with medical complexity; MCA, medical child abuse; CPS, child protective services; PCP, primary care provider; MDT, multidisciplinary team; RN, registered nurse.

Whereas the first two decision points in Figure 1 focus on identifying a concern for OM and possibly MCA, the third emphasizes the safety of the child and involvement of child protective services (CPS) if MCA is suspected. Collaboration with the child abuse team is recommended in an effort to best address this question. A report to investigating agencies by providers, including CPS and possibly law enforcement, is mandated in all 50 states when there is “reasonable suspicion” of abuse ( www.childwelfare. gov). A direct report to law enforcement may be required based on severity of abuse, although state laws vary. It is critical that the provider and MDT address the possible need for a report to these investigating agencies in every step. Medical providers often do not have a complete understanding of the child and family functioning in the community (for example on social media or at school), as such information when obtained by CPS and law enforcement can help with the evaluation. Lastly, it can be difficult to predict when perpetrators of MCA will progress along the spectrum of severity from exaggeration, to fabrication, and ultimately induction, making consideration of safety paramount.

Ultimately, potential outcomes of the MDT meeting include the following: (1) no concern for OM, (2) potential evidence for OM without suspicion for MCA, and (3) potential for MCA. Each category leads to a specific action plan and family communication strategy as highlighted in the guide with a focus on the safety of the child and support for the family.

If the clinical history is highly suspicious for MCA, in addition to the urgent reporting responsibility, inpatient evaluation may be necessary, and careful supervision of all contact between the caregiver and child should be strongly considered. Close documentation of caregiver reports and objective findings by team members is critical and can aid in eventual diagnosis. Timing, participants, and location of communication with the family/caregiver requires careful consideration, as caregivers may escalate harmful behaviors toward the patient once confronted with the suspicion of MCA, making this a particularly vulnerable time for the child. Lastly, it is important when reporting to CPS to discuss the harm to the child specifically as not all counties have experience addressing MCA.

If the clinical history is consistent with OM but not suspicious of MCA, a plan should be established to move to de-escalating potentially unnecessary interventions and provide support, particularly mental and behavioral health, to family and the child. This can be extremely important if parental mental health issues, such as anxiety, depression, or PTSD, seem to play a significant role in OM. Clear, concise, and frequent communication among team members and with the family is paramount as medical care is de-escalated. Partnering with the family in the plan of care and addressing caregiver concerns can help improve outcomes. There are several intensive rehabilitation programs at children’s hospitals across the country that may assist in de-escalation of medical interventions. Caregiver/family responses at this time vary and caregiver obstruction to moving forward with medical de-escalation should prompt further discussions regarding concerns for MCA, and taking the time to explore barriers to de-escalation including the need for mental health support for all involved.

Effect on the Medical Team

Confronting OM, especially if MCA is suspected, can take an emotional, intellectual, and professional toll on medical teams. It is often easier to continue with the status quo than raise difficult questions. There is often initially disagreement and discordance among MDT members,7,11 especially regarding MCA. Providers will need to take a diagnostic pause and critically evaluate for cognitive biases, recognizing if decisions are being influenced not by analysis, evidence, or medical opinion, but rather by emotion or perpetuated misinformation. Providers may not feel adequately prepared to discuss psychosocial aspects of health, may feel uncomfortable with confronting a family, and in the setting of suspected MCA unwilling to believe the parent could be a perpetuator. Providers and staff may feel isolated, ashamed of previous treatments, and may benefit from psychological support and mentoring. Reaching out to the CAT and colleagues who have dealt with similar cases can be particularly helpful.

For MCA specifically, providers are often reluctant to report suspected abuse for multiple reasons and report needing to feel at least 90% certain of the diagnosis of MCA diagnosis before reporting to CPS.10 Providers who have increased familiarity with the family may be less likely to report for fear of making the wrong diagnosis or fear of losing the family from their practice. Prior negative interactions with CPS or the legal system as well as no standard definition of “reasonable suspicion” may also decrease the likelihood of making a report.33


CMC are at high risk of OM. A subset of CMC may also be victims of MCA. Providers who care for CMC should feel secure in when to raise the concern for OM and how to proceed with the assistance of an MDT. In efforts to prevent OM, health care teams should deliver coordinated care that focuses on family and child functional goals, move to reduce medically unwarranted testing even if requested by caregivers, consider the long- and short-term harm of a diagnostic test, and create clear-cut guidelines regarding trials of medications when used for vague symptoms.3,5,16 Providers should be aware of their own personal biases and that parental beliefs and behaviors may influence a child’s presenting clinical problems.16 Partnering with behavioral health experts and CAT when available can be beneficial. MCA should be included early in the differential diagnosis, especially of perplexing or relentless symptoms.

The realities of OM or MCA are difficult concepts to rationalize for a health care workforce and parents/caregivers who are culturally dedicated to improve the lives of children in their care. Grappling with the emotions around such suspicion is difficult for all involved. The framework present here is intended to give pediatricians a context for when to consider the potential for OM and MCA, the value of partnering with a multidisciplinary team to help evaluate the potential, and to move to protect the child or de-escalate unwarranted care when indicated.

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