So it is when people like our parents who are in late states of dementia often have problems eating and drinking. They cannot communicate, they cannot eat, they lose weight. Chewing is hard. They aspirate food particles into the lungs, which can result in difficulty in breathing and pneumonia. This is hard to take. Surely if they would eat, they would get better, and often a feeding tube is offered as an option. Feeding tubes are more commonly used in the south and among African Americans than here in New England.
Think twice before taking this route.
An article in the New York Times describes the decline in the use of feeding tubes in these cases of late stage of Alzheimer's, following recommendations by the American Geriatrics Society and the American Board of Internal Medicine. In summary, feeding tubes do not give any better outcome than careful handfeeding but they do increase risk:
- It can cause bleeding, infection, skin irritation, or leaking around the tube.
- It can cause nausea, vomiting, and diarrhea.
- The tube can get blocked or fall out, and must be replaced in a hospital.
- Many people with Alzheimer’s disease are bothered by the tube and try to pull it out. To prevent that, they are often tied down or given drugs.
- Tube-fed patients are more likely to get pressure sores.
- Tube-fed patients are more likely to spit up food, which may lead to pneumonia.
- At the end of life, fluids can fill the patient’s lungs, and cause breathing problems.
Feeding tubes are associated with increased agitation in the patient which can lead to physical or chemical restraint.
And they cost a lot to put in place.
There are times when feeding tubes are a good idea. These include conditions that have a good prognosis, unlike advanced Alzheimer's.
The ABIM report cited above includes several recommendations from Consumer Reports for caring for a person who has severe Alzheimer's Disease. These include treating conditions that lead to loss of apatite such as constipation, stopping unneeded medications that can make eating problems worse, and scheduling dental care in case a problem with the teeth results in painful eating.
All this should be discussed with the patient and the patient's medical team.
Most important is that there is an advanced medical directive and that you have that talk with your parents about what they want done to and for them at the end of their lives.