When someone stops eating or drinking near the end of life

For many families, feeding someone is how love gets shown. So when a parent turns away from food, it can feel like starving, or like giving up. Near the end of life, people often lose the desire to eat or drink, and forcing food or fluids can cause discomfort or choking.¹ This note covers what’s happening, what helps, what IV fluids and feeding tubes can and can’t do, the special case of advanced dementia, and how to keep caring when food is no longer the way.

The short answer

• Losing the desire to eat or drink is common near the end of life. Don’t force food or fluids.¹
• Ice chips and swabbing the mouth and lips keep them moist.¹
• In the last days, IV fluids haven’t been shown to help people live longer or improve their quality of life, and extra nutrition may raise the risk of food or fluid going into the lungs, and of infections.¹
• For people with advanced dementia, the American Geriatrics Society doesn’t recommend feeding tubes. Careful hand feeding is the alternative.²
• A POLST lets a seriously ill person say ahead of time whether they want artificial nutrition by tube.³

What’s happening

As an illness reaches its last stage, eating and drinking less is part of what families commonly see.¹ A person who spends most of the day in bed needs very little food.⁴

What helps

• Offer, don’t push. Small tastes of favorite foods, when the person wants them. Writing about advanced dementia, a Johns Hopkins doctor advises offering any food the person likes, except in rare cases.⁴
• Sit them up. Food and drink are probably less likely to go into the lungs when the person sits up to eat than when they lie back.⁴
• Stop when they stop. Food and fluids shouldn’t be forced, because that can cause discomfort or choking.¹
• Keep the mouth moist. Ice chips, frozen juice or a moist swab keep the mouth and lips from drying out.^1,4 Lip balm helps cracked lips.
• Look at the medicines. Some medicines dry the mouth or dull the appetite. Ask the nurse which ones are still needed.⁴

What about IV fluids?

In the last days of life, giving fluids by vein or under the skin hasn’t been shown to help people live longer or improve their quality of life. The National Cancer Institute adds that the harms are minor, and some families feel the person is less tired and more alert with them.¹ It’s a conversation to have with the hospice team, about this person and this week.

What about a feeding tube?

In the last days of life, extra nutrition doesn’t help, and it may raise the risk of food or fluid going into the lungs, and of infection.¹ A tube is a medical treatment, and a hospice patient has the right to refuse any care or treatment.⁵

Advanced dementia

Families of people with advanced dementia are sometimes asked about a feeding tube. The American Geriatrics Society’s public site says feeding tubes are not recommended for older adults with advanced dementia, and that the person should be hand or spoon fed in a quiet, calm setting.²

The Johns Hopkins doctor writing for the same site explains why. Tube feeding hasn’t been shown to help people with advanced dementia live longer or suffer less, good evidence suggests it doesn’t lower the risk of pneumonia from food or fluid going into the lungs, and it brings its own risks, like infection and leaks around the tube. Some people with tubes have to be restrained so they don’t pull the tube out. Hand feeding takes much more time, but it appears to be a better choice.⁴ Hospice for dementia explains what else changes.

Deciding ahead of time

A POLST is a medical order for people with a serious, chronic, progressive or terminal illness. Filling one out is entirely voluntary, and one of its choices is whether to provide artificial nutrition by tube.³ POLST in California explains how to fill it out.

Other ways to care

When food is no longer the way, other things still are: mouth care, lotion on dry hands, a favorite song, a prayer, the family’s stories, or simply sitting close. Keep talking to them. What to expect in the last days of life describes the other changes.

When to call the hospice line

• Coughing or choking when the person eats or drinks.
• A dry, sore or bleeding mouth.
• Signs of discomfort you can’t settle: grimacing, moaning or restlessness.
• Any time the family can’t agree about food, fluids or a tube. The nurse and the social worker can help you talk it through.