I have been the clinical coordinator of a busy pediatric pain management clinic for the past five years. My tenure in this capacity has allowed me to witness some of the most profound marvels of human endurance, and has introduced me to some of the most heartbreakingly devastating medical conditions. One of the most difficult medical phenomena I have encountered in my career is a psychiatric condition called Munchausen Syndrome by Proxy.
Munchausen Syndrome by Proxy is a rare psychiatric disorder in which parents fabricate illnesses in their children, sometimes even going so far as to cause them physical harm and even death. It is believed that, in most cases, perpetrators of Munchausen Syndrome by Proxy are addicted to attention, particularly the sympathetic attention that the parent of a chronically ill child can garner. Far more common in mothers than in fathers, Munchausen Syndrome by Proxy can have devastating affects on the health of the afflicted child. In many cases, a perfectly healthy child may become legitimately fragile, medically, due to invasive and irreversible procedures performed to address medical problems that never existed in the first place.
Munchausen Syndrome by Proxy is child abuse, perpetrated by a parent with a psychiatric condition that has not been detected. Often, a parent with Munchausen Syndrome by Proxy is educated, well spoken, and appears to be a strong, passionate, well-researched advocate for the health of her child. A surprisingly high percentage of parents afflicted with Munchausen Syndrome by Proxy work in healthcare.
Sadly, Munchausen Syndrome by Proxy can be extremely difficult to detect, and even in cases where it is suspected, it can sometimes prove nearly impossible to substantiate. As healthcare professionals, much of what we treat, particularly in the pediatric setting, is based on the reporting of symptoms. For children, the most reliable reporter of those symptoms is usually thought to be the parents. Most physicians, nurses, social workers, and other healthcare personnel charged with the care of sick children will balk at accusing a parent of deliberately causing their child harm under potentially ambiguous circumstances. Often there is nothing more than a nontraditional path followed by the parents of a sick child or a gut feeling by a healthcare provider to suggest Munchausen Syndrome by Proxy.
However, despite the difficulty of identifying and substantiating Munchausen Syndrome by Proxy, parents are sometimes falsely accused of causing their children medical harm. As with any form of child abuse, the belief by a healthcare professional that a parent is exhibiting signs of Munchausen Syndrome by Proxy presents a concern for the welfare of the child involved that cannot be ignored. When the interpretation of those signs proves to be off base, the fall out can be devastating to the entire family.
A nine-year-old boy was treated in my clinic for myriad pain and illness conditions. I will call him Brian. Brian was an upbeat kid, the youngest of three children. His mother was his sole caretaker, and was not on good terms with Brian’s father. Brian and his mother displayed a close and loving relationship, and appeared at ease with one another. They appeared to be closer, and more dependent on each other for social validation, than most parent-child relationships.
By the time he began treatment in my clinic, Brian was a very medically involved little boy. He had several problems that kept him from being able to attend school with his classmates, which was a great disappointment to him; he was home-schooled by his mother. He had undergone a number of surgical procedures, some diagnostic and some therapeutic, in the attempt to address some of his medical problems and to ease the suffering caused by his illness. He spent a lot of time at the hospital, seeing specialist after specialist, and his mother was a frequent, although reasonable and non-demanding, caller to physician offices.
The concern that Brian was a victim of a mother with Munchausen Syndrome by Proxy was raised by one of his specialists. He wanted to place Brian on a medication that he felt could address some of Brian’s medical problems. Brian’s mother balked at the addition of this new medication to her son’s medical regime.
Over a period of several months, the specialist continued to re-approach the topic of this medication with Brian and his mother, and his mother continued to resist. Visit after visit, she would agree to consider the medication, but would never actually agree to place her son on it.
The same specialist also requested permission to contact a therapist who had worked with Brian in the past, although not for the treatment of Brian’s concerns. The therapist had been working with the entire family, while trying to address some emotional problems experienced another family member. Brian’s mother refused to allow the specialist access to the records of those sessions, or to grant permission for him to speak with that therapist. She stated that she felt that the request was an infringement on the privacies of every member of the family, particularly that of Brian and of the member whose problems were being addressed during the counseling sessions.
After approximately six months, with Brian seen by the specialist monthly, he went on record that he suspected Brian’s mother of Munchausen Syndrome by Proxy. He considered her avoidance of the topic of the medication regime to be evidence that she did not want Brian to get better, and that her refusal to grant access to Brian’s tangential therapy records was an indicator that she was hiding psychological problems significant to Brian or to herself.
Munchausen Syndrome by Proxy is child abuse, plain and simple. It is anything but a plain and simple process, however, to determine whether or not an accusation of the disorder has merit. As in all cases of suspected child abuse, social service was contacted, who contacted the Department of Social Services. Brian’s family was now in the system while state workers tried to get to the bottom of the accusations.
I will state, here, that I do not believe that Brian’s mother is suffering from Munchausen Syndrome by Proxy. Can I be sure? No. However, I cannot really be sure that any of my chronically ill patients are not the victims of this horrific disorder. I can only go where the evidence points me. Fortunately (and I must qualify that, as in this sort of case you can only pray that your assessment is correct), in Brian’s case, there were enough people of like mind questioned in the early stages of the DSS investigation that there was no disruption to the family structure.
What could have been done differently to ensure Brian’s safety while avoiding the dangerous misdiagnosis of Munchausen Syndrome by Proxy? Better communication with the mother would be an important start. Once the specialist realized that Brian’s mother was hesitant to explore his intended interventions, he should have asked more specific questions about her concerns than he did. Repeating his wishes visit after visit, without opening a more detailed dialogue with the mother, only served to make her feel defensive and nervous, which increased the suspiciousness of her demeanor.
In Brian’s case, there were some pertinent details that may have been considered in light of his mother’s hesitancies. One piece of information, which the specialist should have had full access to, is the fact that Brian had experienced several harmful reactions to medications that had been tried previously to treat his condition, some of which had been serious enough to alter his care. Another relevant detail to consider is the precariousness of the relationship between Brian’s parents. As mentioned earlier, Brian’s mother was not on good terms with his father. In fact, there was a long running court case between them. In the matter of the access to the therapy records, her protectiveness of her family’s privacy may have been grounded in some very real concerns for the outcome of that case.
Furthermore, if the specialist really felt that a psychological component was important to assess the bigger picture of Brian’s care at home, he might have considered referring Brian for those services himself. If that referral was rebuffed, he could certainly have set up a joint meeting with Brian’s mother and a hospital social worker, employing the use of someone more experienced with delicate family dynamics to help communicate with the mother, and to help him to determine whether his suspicions were shared by another professional examining the situation.
Munchausen Syndrome by Proxy is a devastating disorder. It is so destructive to the child or children of the parent who is afflicted with it that it is hard to write an article advocating more information be gathered before a report of the disorder is made. However, it is because this condition is so destructive that it is imperative that a physician or other healthcare professional never report a parent for this subtler, more ambiguous, yet often more insidious form of child abuse until they have examined whether there is evidence that the child is being caused harm, or whether they are experiencing frustration over a lack of communication with the parent, or over disagreement about the child’s treatment plan. As devastating as Munchausen Syndrome by Proxy is, it is important to be cognizant of the alternate devastation of having a medically sensitive child removed from a parent’s care over a miscommunication that might have been avoided through the use of better communication skills on the part of the healthcare professional, or by the assistance of outside intervention to help to assess the safety of the child in question.