Rollercoaster

They had sat there next to his bed for 8 days now. Like clockwork, they would arrive at 8AM, get up and go eat lunch at the hospital cafeteria (eating their own packed lunches), and then leave to sleep at home at 10pm. Every day the same. Their loved one was my patient Mr. Schaffer, the two were his daughter and his wife. The problem is that there didn’t seem like there was an end in sight.

Mr. Schaffer had very advanced dementia. I had admitted him to the hospital for a pneumonia. Most likely he had swallowed food into his lungs (called aspiration), and that is what caused the pneumonia. When I admitted him his daughter, Effie,  was beyond anxious. She seemed to be begging me to cure him. At times near crying. 

She couldn’t look me in the eyes. Ashamed she said, “Doctor, the nurse at the Nursing Home told me that this is my fault. She told me I shouldn’t have tried so hard to feed my dad dinner last night.” Tears, followed her words.

I held Effie’s hand. “I want you to know that this isn’t anyone's fault. Mr. Schaffer has dementia, and I know that most people realize that Dementia means that it affects our short term memory. What most people don’t realize is that at the end stages of this disease it affects our muscles too. It makes it more difficult to walk or talk or even use the muscles we use to swallow.” I paused to let this sink in. “So you see, the fact that this happened was just because his disease has progressed, it was bound to happen”.

A breath of relief flowed out of Effie and even her mother. They looked at me like I had fixed them not their father. I admitted Mr. Schaffer to the hospital and unfortunately he did not get better. His infection got worse and I actually had to ask them to prepare for the worst. I told them that I expected him to die in the next couple days. That night Mr. Schaffer pulled his IV  out  and I asked the nurses not to put it back in. Maybe on some level he was saying that he didn’t want any further treatment, he was ready to die.

Well of course the next morning he was awake and smiling at his daughters when I made my rounds. The daughters were sure God had brought him back. I was sure he was rallying before he died. Sometimes people have one last burst of energy and lucidity before they die hours later. But the next day he was still there and still awake. This was without antibiotics. Well, I guess he was turning around for the better. Up till that point I hadn’t let him eat, but if he was better then he’d die if we didn’t get nutrition into him. So I let him eat a consistency of food and thickened liquids that would be the least threat for aspiration.

Unfortunately, you could hear the food aspirating when he ate it. And that night he got sick again.
We discussed a G-tube (a tube directly into his stomach that can deliver artificial food), I convinced them not to pursue one.  In patients with dementia a G-tube does not prevent aspiration events , and thus wouldn’t prevent him from getting infections. I explained that if we didn’t let Mr. Schaffer eat he would die of dehydration and if he did he would die of an aspiration pneumonia.

Obviously they didn’t know what to do. There’s no good answer. Ultimately we agreed to make him as comfortable as possible. Let him eat if he wants to and whatever happens, happens. So now Mother and daughter are sitting by Mr. Schaffer’s bed, waiting for him to die. In at 8 and out at 10 and only a break for lunch and dinner at the cafeteria.  In the last 8 days he has had good and bad days, I have told them at least twice that he would die soon. But he rallied back. He gets worse, then better. He is absolutely comfortable, and we all know he will die, but it must be a horrible roller coaster.