I've now survived two whole weeks on the pediatric wards (one week left). I knew it'd be tough, but I never imagined how frustrating it is to be a pediatrician and have very little control over what parents decide to do. In adult medicine, you can tell someone to take their blood pressure medicine or they'll have a stroke, which would be his or her own doing. Throw in a kid- one who isn't able to make decision regarding their own health or treatment- with that same adult who won't take their blood pressure medications. Who's fault is it when something happens to the child? The adult? Or even the pediatrician?
Imaging that at the extreme, I thought I'd just share a few things I've learned while doing some research on Munchausen Syndrome by Proxy (MBP), as I've found that even the healthcare professionals working with me didn't know much about it either, including how to assess for it or how to handle suspicions.
My first instinctive definition was a parent deliberately hurting or poisoning a child, straight out of the movie
The Sixth Sense when the mom is shown adding floor cleaner to her daughter's food. This is definitely a an example of MBP, but only one small subset. Misconceptions about the definition probably mean a lot of cases will go undetected.
Definition: both circumstances must be present: harm or potential harm to the child involving medical care, and a caregiver who is causing the harm or potential harm to happen. (1)
MBP is absolutely a form of child abuse- and is technically the
most fatal form with the highest mortality rate. MBP should be suspected "when parents misinterpret or exaggerate normal behaviors, and true cases range from apparent fabrication of reported symptoms to outright fabrication of signs of disease." (2). Yep, that's right- as simple as lying about symptoms. The problem is that usually it goes much further than that- the parent starts taking the child to the doctor or hospital frequently, then starts asking for invasive and unnecessary tests or surgeries. It could even just be an exacerbation of an existing medical condition, resulting from the caregiver not adhering to the medical plan or treatment.
In 80-90% of cases, the perpetrator is the child's mother.
When you should be concerned about MBP:
- Clinically undetectable signs/symptoms that only occur when the parent is around, that don't respond well to treatment
- One or more complaint or diagnosis that is difficult to prove or disprove: behavioral disorders (most commonly ADHD), seizures, abdominal pain
- Unexplained or recurrent illnesses requiring many doctor appointments, hospital stays and/or procedures
- Discrepancies between the child's clinical presentation, the child's complaints, labs or other data, and/or the caregiver's story
- Caregiver characteristics: very willing to accept invasive procedures for the child, refuses to accept that the child's illness is not serious, very friendly with medical staff, seems knowledgeable about procedures and diagnoses (they are often healthcare providers themselves), resistant to discharging the patient from the hospital. Caregivers are often found to have mild cognitive delays, despite an eagerness to label the child with cognitive problems.
- Abnormal relationship between caregiver and child: excessively clingy, overprotective or codependency
- Frequent absences from school due to medical appointments or hospitalizations, resulting in social and academic problems
- Family or social history with many stressors: divorce is common, dads who are in and out of the household, problems with providing a stable environment (ie housing)
- Siblings with odd illnesses or unexplained deaths
There are many speculations about caregivers' motives. Sometimes there's a financial reason (they get disability, food stamps, charity, etc), or drug-seeking behavior. (3) In nearly all cases, the caregiver craves positive attention, that she's doing a wonderful job caring for her sick child: "she has an insatiable need for social and emotional gain that must be fulfilled regardless of the harm to her child." (1) Other motives: to gain sympathy/attention/respect for being the only one able to rescue the child, showing off/outwitting important or smart people like doctors or researchers, getting back at a neglectful spouse, for getting family support/attention, having a social life, to escape other responsibilities: "No one expects much else (eg, education, employment, household chores) from the devoted mother with a chronically ill child." (1)
The child's safety should always be the first priority. Without intervention, many children go on to develop Munchausen Syndrome themselves (they fabricate or create their own illnesses even without a caregiver), and even more disturbing,
they often become the perpetrator with their own children.
It is so important to recognize the possibility. While healthcare providers have to be extremely careful about making such drastic accusations with implications, it can't be ignored, and at the least other professions should be consulted, such as social workers, forensic pediatricians or psychologists. Because it's estimated that 70% of perpetrators will continue injurious behaviors during hospitalizations, video surveillance is a tried-and-true way to confirm the diagnosis (while sticky in a legal sense, it's not illegal).
While the caregiver is ultimately responsible for the effects of MSP, healthcare providers need to understand their role.
"MBP is chiefly differentiated from other forms of child maltreatment by the active involvement of the medical profession in the production of morbitiy; MBP is abuse, and the medical system is critical to its genesis." (1)
In fact, some literature places a majority of blame on the physician, including in the definition that it is "a complex transaction among at least three persons- a parent, his or her child and the physician" and some have even reported that "75% of the morbidity to the child 'occurred in hospitals and at the hand of physicians.'"(3) The physician, although unknowingly, collaborates with the caregiver, which further perpetuates the problem. The
physician orders the painful, invasive, unnecessary procedures, not the parent. These parents are often so skilled at their manipulation that the physicians have testified
for the perpetrator during trial.
I understand that not every case will be cut-and-dry, and that there's often no way for a physician to know. But when there's a strong suspicion, we must trust our instincts and dig a bit deeper for the child's sake.
Brief references:
1. Monsters in the Closet: Munchausen Syndrome by Proxy (Pediatric Care)
2. Beyond Munchausen Syndrome by Proxy: Identification and Treatment of Child Abuse in a Medical Setting (American Academy of Pediatrics)
3. Update on Munchasen Syndrome by Proxy (Galvin, et al, Curr Opin Pediatr 2005)
