future. Of all the things I talk about with my patients and their families, the discussion about feeding tubes is perhaps the hardest. I have seen families literally ripped apart by the often agonizing decision of whether or not to insert a feeding tube into a dementia patient who has begun to lose weight. Part of what makes these conversations so hard is the common misconception that feeding tubes prolong life. In reality, there is really no place for feeding tubes in terminal dementia. Objectively, they have never been shown to increase a person’s length of life or reduce the number of episodes of pneumonia. Feeding tubes are not without their side effects: They require a surgical procedure or endoscopy to insert them in the first place; they fall out easily, requiring ER visits simply to put them back in again; and they can get infected or become blocked.
There’s another factor that makes conversations about feeding tubes difficult. Many people feel that not feeding patients is tantamount to cruel and unusual punishment. Unfortunately, loss of weight at the end of life is a natural byproduct of the body shutting down as it prepares itself for death. Patients at this stage of life do not perceive hunger or thirst the way someone who is healthy experiences it. But it’s never easy to convince family members of this as their loved ones are fading away. It’s infinitely easier when the patient has consciously weighed in on the matter at a more opportune time.
Frank looked at me with a guilty expression.
“You’re right, Doctor. She did say that she didn’t want a tube. She’s got to eat, though. How can she get better if she doesn’t eat?”
Tears came to Frank’s eyes. They streamed down his face and he wiped them away with the back of his shirtsleeve.
“Hopefully, she’ll start eating soon, Frank. In the meantime, we will continue to give her intravenous fluids and try to feed her what we can. We just have to hope for the best.”
“But if that doesn’t work?” he asked. The desperation was back.
I looked at him and tried to think of something positive to say. My face must have said it all. Frank started to sob.
I crossed the room and grabbed a box of tissues. I handed them to Frank and sat back down again. He took one and dabbed at his face.
“Doctor, I’m not ready for her to go,” he said after a brief silence.
“I know you love her greatly, Frank. Unfortunately, this is how it happens. This is how patients with dementia eventually die.”
Frank looked up at me and again began to cry.
I put my hand on his shoulder but there was nothing more to say.
CHAPTER FIFTEEN
“If there is one spot of sun spilling onto the floor, a cat will find it and soak it up.”
J. A. MCINTOSH
MOST MORNINGS I OPERATE ON AUTOPILOT. I GET OUT OF bed, jump in the shower, and get dressed without giving any of it much thought. I use the time to plan my day, figure out whether I can stop to eat breakfast, decide where I need to go and what I need to do. It’s the way most of us begin our day, relying on routine and the body to know what it needs to do while we scheme and dream.
As I watched my two children learn to walk, bathe, and feed themselves, I thought of how difficult these activities are to master. Walking doesn’t begin with that first step. It begins with an awkward roll, followed by an excited crawl, then a grasp for a chair leg, and more than a few bumps and bruises before that first momentous and life-changing step. Then of course there’s no stopping them.
We spend the first few years of our lives learning how to do these core activities and then we move on, never giving them another thought. For most of our lives we accept the ability to take care of ourselves as a given—until a health care issue robs us or a loved one of these primal skills. When that health care issue is dementia, we wonder if we’ll ever take anything for granted again.
As the dementia patient unlearns how to perform the basic functions of life, we quickly find out just how difficult it is to bathe a 189-pound man who offers no assistance. We learn that the very act of transferring someone onto the toilet can become a multiperson job. We also discover just how much patience is required