If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
Some things to know as you ponder the decision:
- Be sure you understand how a feeding tube will help -- or not.
A 2011 study in Archives of Internal Medicine found that caregivers tend to have high expectations of the benefits of feeding tubes, and that these expectations rarely reflect reality. For example, feeding tubes are linked to aspiration pneumonia, a common cause of death in people with dementia. The common misperception is that the person will "starve to death" without intervention, when in fact the eating "problems" may be part of the natural process of the body shutting down.
- Realize that it's harder to get a feeding tube removed than to have one placed.
Sometimes caregivers think, "Well, let's see how it goes." But policies and permissions may be such that a reversal of this measure is difficult to change, especially if there's no advance directive in place specifying that the person doesn't wish to have this form of life support.
- Consider making hospice part of your decision-making.
Feeding tubes do help prolong life in some patients, but when someone has advanced dementia, especially, you may wish to weigh the quality of life against its quantity. Hospice personnel are trained to help families make difficult end-of-life decisions. They can also find ways to keep someone comfortable and pain-free even if they've lost the ability to eat.