Feeding Tubes for Dementia Patients May Become a Thing of the Past

The symptoms of dementia begin to wear families down long before grandpa or grandma gets put in the old folks home.

Usually there have been years and years in which things weren't just right. Maybe the family member spent a lot of money on ill-advised investments. Maybe he or she felt compelled to give away treasured objects that were supposed to go to the children. People who have Alzheimer's or Parkinson's or Lewy body disease may be given drugs that make them hypersexual, and lack the judgment to comport themselves with dignity in the general public, with the family, or in situations that can get them in trouble with the law.

And the tragedy is that in their lucid moments, these same people may say that they would rather be dead than to live in long periods of dementia punctuate by short periods of utter embarrassment. Compounding the problem is the fact that taking care of people with these kinds of problems is financially ruinous. Not only do they run through their life savings, their children do, too. Tensions between siblings almost always ensue.

What's the ethical thing to do?

The Convenient Fiction of "Failure to Thrive"

In the United States, the inconvenient elderly often reach a point that they cannot or do not eat or drink. Not eating leads to slow wasting of muscles, which leaves the elder bedridden. Not drinking is a much faster way to go. You can be taking daddy out for barbecue one day and he may be dying of dehydration the next. The only way to treat dehydration is with an IV. Just about any nurse can give one, but you aren't going to get one in a nursing home. You have to go to the emergency room of a hospital for that. The nursing home won't take your loved one to the hospital for that IV. You are going to have to get an ambulance, and pay for it. 

READ Dehydration - Causes, Symptoms, and Prevention

Your pop is rehydrated. He's lucid. He's using words like "otolaryngology" in sensible conversation and complimenting the nursing aides in two appropriate foreign languages, one of them Czech, which seems to take a lot of brain cells. He's asking to see the old home place and say goodbye. Your sibling doesn't want him to leave the nursing home to take a look, so you can't take him. Calls to lawyers take place. Your father becomes depressed. He won't drink. The nursing home won't make him, and you're getting a call asking you whether to let your parent die or take him to an ER again two days later. And another time two days after that. And another time two days after that.

The Convenient Fiction of Failure to Thrive

Many families resolve these kinds of dilemmas by (1) slapping down disagreement in the family with legal action and (2) instructing the care facility to maintain life with hand feeding only under an order of hospice care. Then, when the family member dies of starvation or thirst a few agonizing weeks later, the cause of death is conveniently labeled "failure to thrive." They just didn't make it. Gee, we don't know why.

What's Involved in Getting Your Family Member a Feeding Tube, or Depriving Them of One?

There is another approach to this problem. When people can't or won't feed themselves, it's sometimes possible to implant a feeding tube.

A feeding tube is a medical device for delivering food and fluid to the digestive tract. It's usually made of plastic or silicone, and no more than a few millimeters wide. The tube may be:

• Nasogastric, extending from the nose to the stomach.
• Nasojejunal, extending from the nose to the small intestine.
• Gastric, placed into the stomach through a small epigastric ("over the stomach") incision in the skin. This kind of feeding tube usually has a small button for opening and closing it.
• Gastrojejeunal, accessing both the stomach and the small intestine through an incision. This kind of tube is used when there is significant danger of aspiration of the contents of the stomach into the lungs or some other condition that prevents feeding directly into the stomach.
• Jejeunal, accessing the small intestine but not the stomach. The surgical procedure for this placement is not something that most people who have already accumulated other health problems, such as severe cardiomyopathy after heart attacks or breathing problems with Parkinson's can easily stand.

How often do people who have advanced dementia get feeding tubes? The answer is "Not often." In 2000, about 12 percent of people who had advanced dementia got this kind of intervention. In 2016, the percentage has fallen to about six, or one in sixteen people who have the problem. In the 1990's, the proportion had been about 30 percent.

There are some very practical reasons for this. One is obvious is you have dealt with an older person who has dementia but maybe not so obvious if you haven't. Many people who have dementia like to pull on things. If the elder would be constantly removing his or her own feeding tube, the trauma of constantly reinserting it could easily outweigh the benefits of nutrition and hydration.

Another problem is pressure sores. You may have some familiarity with the idea of bedsores. The pressure sores from a feeding tube are similar, except they occur inside the digestive tract. Just as bedsores can get infected, so can pressure sores. There can be horrific consequences of that kind of infection.

READ Is Alzheimer's Reversible?

A more consideration, however, is the need to come to terms with the reality that dementia leads to death. As the son of someone who went through this what I am confident in recommending to anyone is that it is a good idea to maintain hand feeding as long as possible. Food is one of the last pleasures in the lives of people who are losing their battle with dementia. As long as you can, get your loved one the foods they want.

But it's also a matter of how long they can enjoy them. Putting food in a person's mouth is pointless if they can't chew it, or they don't know what to do with it. Even when someone has dementia, the aroma of a food they associate with happy times seems to trigger happy memories. But you have to avoid giving your loved one the food and water that can make them literally choke.

Be as kind as you can as long as you can. Accept the reality of death. And be kind to those with whom you disagreed along the way.