Featured Personal Health Navigator

Why patients with advanced dementia should be getting palliative care, not feeding tubes

Elderly person getting fed by health care worker
Written by Paul Taylor

QUESTION: My mother has advanced dementia and lives in a nursing home. She is now having problems swallowing her food. I’ve asked the staff at the home if she can get nourishment through a feeding tube. But they say there are risks involved with artificial nutrition. I don’t want her to starve to death. What are the pros and cons of feeding tubes?

 ANSWER: Feeding tubes are sometimes used for people who can’t swallow or are at risk of choking.

The main goal is to prevent food or liquid from going down the wrong way and accidentally ending up in the lungs. If foreign materials are inhaled into the airways, the patient may develop a serious lung infection known as aspiration pneumonia.

To insert a feeding tube, the patient is mildly sedated and a doctor makes a cut in the belly to put the tube directly into the stomach. The tube then becomes the regular pathway for delivering liquid nourishment.

It seems like an easy solution, and not so long ago, some patients with severe cognitive impairment were routinely fed this way.

In recent years, however, there’s been a growing recognition that feeding tubes may do more harm than good for people with dementia, says Dr. Irene Ying, a palliative-care physician at Sunnybrook Health Sciences Centre.

For starters, the use of a tube can cause discomfort and may fail to dampen feelings of hunger or thirst.

There’s also a risk that the stomach’s contents will “reflux” – or back up – into the throat and enter the lungs. This means feeding tubes don’t provide 100 percent protection against aspiration pneumonia.

In some cases, a feeding tube may supply more fluid and nutrition than the patient actually needs. This can lead to edema, in which watery fluids build up in tissues or body cavities – including the lungs – causing discomfort and making breathing difficult.

What’s more, artificial feeding can boost the amount of stool – often as diarrhea, increasing the risk of bedsores and infections.

Dr. Ying says feeding tubes are often started with the intention of prolonging a person’s life. Yet, “there is no evidence to show they help with survival,” she says. In fact, the possible complications from this feeding method may hasten the death of a cognitively-impaired individual.

To make matters worse, a patient with dementia is unlikely to understand why a feeding tube has been put in place and could try to pull it out. In response, the patient’s movements may be restricted by the use of a sedating medication or physical restraints.

“It’s really sad when this happens to people with dementia,” says Dr. Peter Tanuseputro, a physician scientist at the Bruyère Research Institute and Ottawa Hospital.

“They can’t express their wishes, so they are more vulnerable to getting care they wouldn’t want.”

Dr. Tanuseputro notes that dementia tends to be a gradually advancing disease which eventually results in death. That’s why it’s important for patients to talk to their families about their end-of-life wishes while they still have the ability to do so.

Dr. Tanuseputro is the lead author of a recent study that looked at spending on end-of-life care in Ontario.

The findings revealed that $4.7-billion annually – 10 percent of the province’s health-care budget – goes to the cost of caring for people in their last year of life. That works out to $54,000 per person – and the lion’s share represents hospital expenditures in the final few months or weeks of life.

As many as half of all terminally-ill Canadians die in hospital, partly because there’s a lack of palliative care and other supports in the community, says Dr. Tanuseputro.

Once they are admitted to hospital, patients are likely to receive treatments aimed at increasing survival. “But when someone is dying, there is often nothing that we can do to prolong life.” In other words, some of those final medical interventions may be unhelpful and even counter-productive because the treatment’s side effects can contribute to patient suffering.

“I think the majority of end-of-life care should be focused on improving their quality of life, and providing a comfortable and meaningful dying experience,” he adds.

“The unfortunate thing is that we are not recognizing that people with advanced dementia are at the end of life and should be receiving palliative care.” He says hospitalization “contributes to them getting aggressive treatment when they shouldn’t be.”

Dr. Ying points out that many expert groups – including the American Geriatrics Society – discourage the use of feeding tubes in patients with advanced dementia. Instead, they recommend careful hand feeding by health-care staff or family members.  This is known as “comfort feeding” and it’s done only when the patient is alert and receptive to food.

The use of a tube, by contrast, amounts to “forced feeding” which isn’t in the best interest of the patient, says Dr. Ying.

About the author

Paul Taylor

Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families, relying heavily on medical and health experts. Email your questions to AskPaul@sunnybrook.ca
and follow me on Twitter @epaultaylor