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.
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.
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”.
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.
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.
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.
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.