Be able to make an informed decision about feeding tubes
Most people in the late stage of Alzheimer’s or dementia have trouble eating and drinking. They may lose weight, become weak, or develop pressure sores. Or, food particles could get into their lungs and cause pneumonia.
When that happens, families may be asked if they want to put in a feeding tube.
Whether or not to use a feeding tube for someone with dementia is one of the most difficult decisions a family has to make. But in many cases, you aren’t getting the unbiased facts you need to help with the decision.
Of course, you want to do everything possible for someone who is declining. But some families have said they felt pressured by doctors or medical staff to use a feeding tube after only brief discussions and weren’t told of the potential risks and trauma to the older adult.
To help you make an informed decision, we explain what a feeding tube is, when they’re used, the risks of using them in late stage dementia, why they might be recommended by doctors, the costs, and why they aren’t recommended at the end of life.
What is a feeding tube and when are they used?
A feeding tube is a tube that’s placed into the body and allows liquid nutrition to be given through the tube. The feeding tube can be placed through the nose and down the throat or it can be placed through a small abdominal cut directly into the stomach.
They’re typically used when a person can’t chew or swallow on their own. A feeding tube can be helpful when the cause of the eating problem is likely to improve. For example, it can help when someone is recovering from surgery, stroke, or brain injury.
Feeding tubes can also be helpful if people have ongoing problems with swallowing, but aren’t in the last stage of an incurable illness – like when someone has ALS (Lou Gehrig’s disease) or Parkinson’s disease.
However, tube feeding doesn’t help people live longer, gain more weight, become stronger, or regain skills.
An alternative to a feeding tube is careful hand feeding. That provides human contact and the enjoyment of tasting food.
Risks of using a feeding tube in late stage dementia
A common issue is that many people with dementia are bothered by the tube and try to pull it out. To prevent that, they must be tied down or given drugs to restrain them.
Additional risks include:
- Bleeding, infection, skin irritation, or leaking around the tube
- Nausea, vomiting, and diarrhea
- The tube can get blocked or fall out (must be replaced in a hospital)
- Higher risk of getting pressure sores
- Higher risk of spitting up food, which could lead to pneumonia
- At the end of life, tube feeding keeps the body more hydrated, which means that fluids can fill the person’s lungs and cause breathing problems
Why feeding tubes may be recommended by medical professionals
There are many caring medical professionals who truly put the patient’s best interests first and take time to explain treatments and discuss pros and cons.
Unfortunately, there are also people who are more focused on saving time or money and may recommend treatments that don’t always benefit the patient.
Knowing the facts about feeding tubes means that you won’t be rushed into an uninformed decision by medical professionals who aren’t focused on your older adult’s wishes or quality of life.
In a hospital, doctors may recommend a feeding tube because it could allow them to discharge the person to a skilled nursing facility sooner, saving money for the hospital. It also saves the doctor time they would have to spend explaining why a family may or may not want to use a feeding tube, answering questions, and waiting for a decision.
In a nursing home, a feeding tube may be recommended because it’s simpler and faster for staff to tube feed a person versus carefully hand feeding them.
Of course, every person’s condition is unique and there may be situations where a feeding tube could be a truly helpful treatment for your older adult.
The important thing is to know that there are always risks as well as benefits. It’s your right as your older adult’s advocate to ask questions and get unbiased facts before making a decision.
You shouldn’t be rushed into a decision this significant after only a quick 15 minute conversation that focuses on the “pros” and rushes through the “cons.”
Feeding tubes are a costly treatment
If it’s something your older adult truly needs, the last thing you’re thinking about is the cost of the treatment.
But if a feeding tube might not be necessary, it’s important to know that the cost of putting one in may be more than $10,000. You may also want to find out about the daily cost of tube feeding, necessary supplies, and follow-up care before making a final decision.
Tube feeding isn’t recommended at the end of life
When someone is at the end of their life and can no longer be fed by hand, you might worry that your older adult will starve to death.
But refusing food and water is a natural, non-painful part of the dying process. They’re not eating because they’re dying, not the other way around.
The body is shutting down and no longer eating or drinking is a normal part of that process. Not allowing the body to naturally dehydrate can cause nausea, vomiting, swelling, or breathing problems due to lung congestion.
Plus, there isn’t any good evidence that tube feeding helps people live longer or improves their quality of life.
Recommended for you:
- 3 Stages of Dementia: What to Expect
- The Five Wishes Living Will Makes End of Life Easier
- Make End-of-Life Conversations with Seniors Easier with This Helpful Guide
By DailyCaring Editorial Team
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