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Dying to Be Sick – Part 2

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Earlier this week I posted about a patient who was malingering. This post is similar, but more disturbing.  As with all the stories I post here, I changed enough of the details to keep identities private.

I took care of an 18 year old boy named Tom.  His mother, Martha, brought him in for his ongoing chronic condition.  She claimed that he had been sick since birth.  He had several implanted tubes to manage his condition including two types of feeding tubes and a central line.  He had not taken oral nutrition in years. Instead he received all of his nutrition through his central intravenous line, a dangerous, expensive treatment.  He also seemed to be developmentally delayed.  He had volumes of medical records that were scanned into our e-chart system and Martha also kept a binder of medical records at the bedside.

As our physicians got to know Tom, Martha, and the tome of medical records, they began to find inconsistencies in the chart.  Soon, all the tests they ran on Tom came back saying that Tom was fine.  The physician continued to dig. The chart included a letter from a physician stating that Tom was on a transplant list in a neighboring state.  The shrewd physician dug a little deeper.  He eventually discovered that the letter was a complete forgery.  Our physician contacted the out of state physician who had never heard of Tom or Martha.

While I’d seen patients play up their symptoms, what was going on here was much more disturbing.  This condition is called Munchausen Syndrome by Proxy.  It is a serious psychological disorder and form of child abuse.  Caregivers fabricate symptoms and episodes for secondary gain, perhaps attention or other perceived benefit. Tom had gone through endless tests and procedures, any one of which could have harmed or killed him.  The fact that he was young and developmentally delayed made him very vulnerable.  The physician referred the patient to psychiatric services and I really hope they both got the help they needed.  It unknown how many children are harmed by Munchausen Syndrome by Proxy.  It is thought to be uncommon and hopefully most caregivers don’t get as far as Martha did.

Dying to Be Sick

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For the most part, people don’t want to be sick and don’t want to be in the hospital. However, I’ve learned that there is a small minority of patients who are desperate to be sick. It’s amazing what lengths they will go to.

One woman came in complaining of a bloody nose.  It was enough blood that she was admitted. The patient was on blood thinners which can often cause bloody noses.  She stated that she was on blood thinners because of a problem with clotting. By her count, she’d thrown 5 clots to her lungs (called a PE or pulmonary embolism) in the last few years.  Because you can die from a PE, she was put on blood thinners to prevent further clots. She also had a filter installed in one of her major vessels to prevent further clots from getting to her lung– a somewhat invasive procedure.

The physician caring for the patient started looking at old CTs and other imaging.  Turns out the patient had never once had a clot show up on any imaging. Her blood work also showed no signs of confirmed clot. Digging a bit deeper the physician noted that the patient used to work in the medical field and would know the symptoms of a lung clot: sudden onset of shortness of breath, chest pain, sweating, cough, anxiety, and even “impending sense of doom.” This woman had talked her way into a filter in her blood stream, blood thinners, and multiple hospital admissions with no objective sign of anything wrong with her at all.  After paying closer attention we discovered she would only get nose bleeds after she had been left alone in the room long enough to cause one herself.  They re-tested her blood and discovered that she was still secretly taking blood thinners, perhaps to keep the nose bleeds coming.

She was one of my first malingering patients and I couldn’t figure out why she would be doing such a thing.  Turns out she was a mother of a small child and her husband was serving in the military in a war zone.  She asked the doctor to write a letter for her saying that she was too sick to care for her child and needed her spouse to come home.  I felt terribly for her.  She felt that she needed her husband back so badly that she would risk her own life with unnecessary medications and procedures.   Unfortunately for her, the doctor had picked up on her true motive and couldn’t write the letter for her.  She left immediately. My guess is that she went to another hospital to try again.  Because of the way privacy laws are, her physician would not and could not try to notify other physicians of the ploy.

Haiti: The faith of those who came before us.

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One of the neatest things about being in Haiti two months after the earthquake was seeing the faith and work of those who came before us.  For example, there are many people in Haiti that still had external fixators holding their bones in place.  External fixators are designed to hold the bone in place so that the bone and surrounding tissue can begin to heal.  Once the healing has started with the bone in the proper place, the external fixator (made up of rods, pins, and bolts) can be removed.  Usually the bone needs to then be put in a cast or splint while it heals the rest of the way.  And then of course the cast will need to be removed.  After the quake physicians put external fixators on bones having the faith that someone will come along with the skill to re-xray the bone and continue with the plan of care. This gentlemen had a fixator in place for two months.  We had to clean around the pins everyday to make sure it did not get infected.  Thankfully, our doctors were able to remove this, and many other, external fixators.

Knowing that follow up might be an issue, they often wrote their plan of care right on the patient.  Here is an example of how medical information was passed along.  Interestingly, this note is in English, a language the patient probably cannot read. One patient had three long strips of tape down the length of her arm.  They said what surgery the patient had, when the splint was to be removed, and what type of range of motion exercises were appropriate!   Perhaps we found the solution to health information exchange and technology… just tattoo it right on the patient!

In all seriousness, it was wonderful to see hope and healing being restored to the injured and to see that even in the worst of circumstances a little ingenuity can help improve patient care and follow up.