What Not to Say to a Sick Patient

After Spencer was born I had a grand mal seizure in the middle of the night. Those are the big full body shaking episodes that you often see on television or the movies when someone is having a seizure. I don't remember a thing about it. I just went to bed one night and woke up with two paramedics staring down at me. THAT freaked me out. You don't expect to wake up in the middle of the night with two strangers in your bedroom. I went on to have many more seizures over the course of seven years, all of them in the middle of the night. It wasn't too bad for me, but they terrified Herman. He did not like waking up in the middle of the night to find his sweet wife unresponsive and shaking in the bed next to him. Well, after my first seizure we needed to figure out what was causing them, so my doctor sent me to a neurologist. He discovered that I had epilepsy, and I probably had had it my entire life. Long story short ... I took medication for it for several years, received a blessing, was tested, and my epilepsy had magically disappeared. So I'm all better now. Hurray!

But this is not a story of my epilepsy. This is a story about my experience with neurologists. I remember my chemistry teacher in high school talking about her college physics professors. She said that they freaked her out because she felt like they were only thinking of formulas and numbers and equations whenever they looked at the world. That is sort of how I have seen the neurologists with whom I have come in contact. My two neurologists were VERY good doctors. They knew their stuff. They knew my condition. But, oh my, I always felt as if they were seeing through me every time I saw them. You know that feeling you get when you see someone looking directly at you, but feeling as if they are looking straight through you into the deepest part of your psyche? That's how I felt. Luckily I was able to understand a lot about what was going on with me, so they didn't need to explain much. But that isn't always the case. How do they handle things when they are having to explain complex neurological problems to people struggling to understand the conditions that plague them?

Yesterday I got a good look at what happens in this situation when a neurologist with bad people skills comes to offer bad news to an unsuspecting family. It wasn't pretty.

This past Monday night we had to take my mom to the hospital so that they could take some time to get her psych drugs regulated. It is one of the difficult things about psychiatric illnesses that there is never really any great cure for them. There are drugs that help, but how much of these drugs to take and in what combination is a total trial and error process. Soooooo frustrating. This makes it to where you could be taking drugs for bi-polar disorder that works just fine, but after a year or two your mind decides that it has had enough of that, so the drugs stop working so well. Then your mind begins to shut down in its own special way, unique to you. That is when we need to bring Mom into a hospital to get things regulated. Monday night it was clear that she needed extra help, so we took her to the hospital in Rolla, and they admitted her to their psych unit.

On Tuesday night my dad wanted to visit Mom, but he is still getting used to the area, so I drove him up. The visit actually went relatively well, especially when compared to how these visits have gone in the past. It was obvious that Mom still needed to stay there for several more days, but it was obvious that she was getting better, thank goodness. But while we were sitting in a little dining area with Mom a woman came rushing in. She introduced herself as a doctor. We assumed that she was a psychiatrist, because what other doctor hangs out in the psych unit? After saying her name and sitting down she looked at my dad and me and said ...

"Well, she has a giant hole in her head."

Really. Those are the exact words that came out of her mouth. My dad and I just looked at her. She was calm and collected. It was as if she was informing us that it was raining outside. That's it. And because you can't always control your first thoughts in moments of crisis, my initial thought was ...

"WHAT THE HELL DOES THAT MEAN?????"

I mean, seriously, who comes into a room and says that to someone???? You don't just walk calmly up to someone's family and tell them that their loved one has a hole in their head. My dad and I first thought that there was a literal hole in her head, like from a gunshot wound. But surely that wasn't true because we would have noticed a gaping wound in her head, right?

We just stared at this lady. Then she clarified to say that Mom had had a stroke at some time. It wasn't a recent stroke, but sometime in the recent past. That is sort of a big deal, don't you think? Strokes can be horribly serious, affecting everything from speech to gross and fine motor skills to behavior. Surely this is not how she announces strokes to people's families normally. The whole conversation got progressively worse. Instead of explaining exactly where the stroke was and what the effects of this would be, she got irritated with us that she had no medical records for Mom. We explained that Mom had only moved here on Saturday, so we haven't had a chance to go to a doctor. We told her that Mom had had a complete medical evaluation in Columbia last fall, so they would have a good record of her med history. She then told us that we had to drive to Columbia to get these records for her. Is this seriously where all of our world's medical expenses have led us to at this day and age? Is it impossible for hospitals to share records electronically? This lady seemed to think that she couldn't collaborate with other doctors at all, and instead of nicely explaining her dilemma, she basically yelled at us for not bringing any medical images with us when we rushed to the emergency room Monday night. Erg....

We thought she needed history, so we started giving Mom's medical history. But as we explained the struggles that Mom has had with her bi-polar disorder in the past several years this doctor seemed irritated with our descriptions. This didn't seem to be the information she was looking for. But my dad and I are old pros when it comes to navigating this world of mental healthcare, so we know what they want to know. We were getting more and more confused as to why this lady kept referring to this hole in Mom's head and not caring at all about her psychological state. What was going on with this strange woman who showed up late in the evening to unload bad news in the crappiest way possible?

Finally, after five minutes of my dad and I trying to talk about Mom's mental health and the doctor repeating that Mom has a hole in her head, she got up to leave. She handed me a card with her info so that we could know where to send Mom's medical records, and ...

Everything began to make sense.

She wasn't the world's worst psychiatrist. She was the world's worst neurologist. She didn't care about Mom's behavior because she was only interested in the physiology of Mom's mind. She looked at Mom as a collection of neurons instead of as a person with thoughts and feelings of her own. I am still terribly irritated with her horrendous bedside manner, but at least now I understand where she was coming from as she spoke with us.

The good news is that, if Mom truly has had a stroke, it doesn't seem to have affected her in any noticeable way ... unless her latest struggles with her bi-polar disorder were worsened because of it. Of course, I am only saying that because I have had to make my own judgement call on this. The doctor was no help at all in this diagnosis. At least I am grateful that my parents are close by now so that our family is able to help in this time of need.

The mind is a horribly complicated organ. There is still so much to understand about how it works and how to fix it when it breaks down. But this I know ... When a person as suffered some sort of breakdown, whether it is due to mental illness or epilepsy, or a stroke, or Parkinson's, or Alzheimer's or something like that, it is a horribly difficult thing for a family to deal with. It affects everyone, and it is scary, so if you are a doctor dealing with these situations, it might be nice for you to learn how to break news to families. It would be nice to be met with care and concern when we receive devastating news rather than the cold, hard facts.