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Ignorance Kills

Ignorance Kills

Good Friday came upon us in a hurry this year. So much was happening in the office during the week prior that several things were left undone related to patient follow-up and care. No matter, I was able to go to the office during our time off and call in several prescriptions left unfilled. But another, more severe incidence happened to my brother in Wichita, Kansas. It underscores the necessity for healthcare reform and I do not mean we need to make healthcare more accessible or less costly.

Mediocrity has infected the entire healthcare system. The theme, "Perfection is too difficult, so let's just be good enough," rings through the halls of hospitals and doctor's offices daily. At root of this absurd mantra is the lack of attention by physicians and physician extenders to detail and their absence of self motivation to get it right all the time. Whatever it is.

The members of my family (including me) have a disease called hereditary hemorrhagic telangiectasia (HHT), also known as Osler–Weber–Rendu disease or Osler–Weber–Rendu syndrome. It is an autosomal dominant genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver, and brain.

It may lead to nosebleeds, acute and chronic digestive tract bleeding, and various other health problems due to the involvement of other organs. Treatment focuses on reducing bleeding from blood vessel lesions, and sometimes surgery or other targeted interventions to remove arteriovenous malformations in organs. Chronic bleeding often requires iron supplements and sometimes blood transfusions. HHT is transmitted in an autosomal dominant fashion, and roughly occurs in one in 5,000 people.

My brother has a particularly severe case of the disease, as well as my uncle. On Good Friday, my brother has a severe nose bleed. When he is having a nose bleed, he allows the blood to drip into a cup. When the cup is full, he pours the blood into a graduated beaker which can hold a sizable amount of fluid. That way, he can accurately measure his blood loss. It is routine for him since he has nose bleeds fairly often.
During this particular nose bleed, he lost over two liters of blood. The average blood volume in most people is five liters. Forty percent of his blood volume seeped out through his nose. He and his wife had a disagreement about him going to a local emergency department because he was frightened that the emergency physician would not know what to do. He was concerned that an inexperienced physician might not understand the gravity of the situation, and proceed as if this was just a common nose bleed. As he acquiesced to his wife's demands to go to the hospital, he passed out while attempting to get into his vehicle. 911 was called, responded and took him to the nearest hospital. 

While he was unconscious, he stopped breathing. He became cyanotic (blue). Then gasped and coughed up a large blood clot that had lodged in his airway. His breathing was restored. Once the paramedics arrived, they put an intravenous line in him and off they went to Podunk View Hospital somewhere in Kansas.

The emergency physician asked him and his wife about the problem. Of course my family responded with telling her that he had HHT, that he needed a filter on his IV and that he probably needed to stay the night and get at least two liters of blood in the morning. He was short of breath, so his wife asked if he could have oxygen. As you might suspect, they gave him fluids with an unfiltered IV line, did not give him oxygen and the emergency physician insisted on cauterizing his nose (which is absolutely contra-indicated with HHT; it will make the problem worse). My brother refused. After three liters of unfiltered fluid, my brother's hematologist responded to his page and told the emergency physician to filter his fluids. So she did. I suspect the emergency physician thought my family was speaking in Armenian or something. She did not understand anything about my brother's problem or remotely what to do about a solution for it.

My sister-in-law requested a hospital transfer to a bigger, better hospital and it was granted. The emergency physician gave report to the accepting hospital, however failed to grasp and recite the gravity of the situation during her report. When the receiving hospital, a tertiary care facility in Wichita evaluated my brother, the first words out of the emergency physician's mouth were, "So why are you here?" My brother explained the situation. The emergency physician ordered a complete blood count. "Your hemoglobin is ten (normal for my brother is thirteen to fourteen). We can't transfuse you until the number is seven. You need to go home. See your primary care physician on Monday. If your hemoglobin is seven or lower, come back. We'll give you some blood." And they were discharged home. If someone would have said, "I lost two liters of blood from a gunshot," the emergency physician's attitude would have been different. At least I hope so. My brother and his wife went home. Dumbfounded.

After the three bags of fluid equilibrates in his body, he will have a hemoglobin level of six or less. When I spoke to him this morning about the episode yesterday, I could not find the words to apologize for the ignorance that has infected the healthcare system. There is no excuse for an emergency physician not to know what HHT is and how to manage it. If his nose bleed had continued, my brother would have needed his nose packed with a special lubricated gauze, both from the posterior and anterior sides. He would have to have been admitted to an ICU since the packing would have desaturated his blood oxygen levels. And all intravenous fluids would have to be filtered to avoid oxygen getting into the line, if it had gotten into his line, the small bubbles that are imperceptible to the naked eye could burst the capillaries and cause more bleeding. 

Since he lost two liters of blood, he would probably require two units of packed red blood cells in the morning. His blood pressure should be monitored during the transfusion, because it might skyrocket. He most certainly would require diuretics to avoid fluid overload (already set in motion due to the three liters of fluid given to resuscitate his blood pressure to higher than normal levels).

During my childhood, I watched my grandmother have nose bleeds every day. I knew how to treat her before I went to medical school. When she was ninety-one years old, a fool of a physician gave her two units of blood which caused her to go into congestive heart failure. I was living in Memphis at the time and could not make it to her bedside to stop it. Eighteen months later, I attended her funeral created by the indiscriminate acts of a few ignorant physicians who refused to listen to my advice. Now I fear that my brother might be going through the same ordeal in the future. I might start keeping my cell phone ringer on, just in case I need to make an urgent trip to Kansas. I had no idea that the healthcare ignorance virus had rapidly spread throughout the nation. It's at epidemic proportions now. We need healthcare reform; educating the doctors would be the first and most valuable step in making our health better. Then add a little compassion. 

Being a physician is not just being an employee at some large medical corporation, it's a calling that requires dedication, self discipline and constant re-education about the things that one does and does not know. There's another Rule of the Jungle emerging rapidly in this country right now: If your disease doesn't kill you, your doctors will.


Posted by Amanda Sanders at 1:02 PM
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