Critter Corner: When Dad Does Not Want a Feeding Tube

Dear Hayek,

My father was diagnosed with Parkinson’s nearly ten years ago. His worsening condition and the coronavirus pandemic have prompted him to get his incapacity planning, estate planning, and long-term care planning in order. He and my mother heard that Parkinson’s patients lose the ability to swallow in the final stages. My father’s joy in life is food and it always has been. He enjoys the taste of good food, even if it’s pureed, and the social aspects of eating a meal with others. He still has his wits about him and is considering putting in his Advance Medical Directive that he does not want a feeding tube in the future should he need one, although my mother thinks he should consider it if it is the difference between life and death. I don’t know anything about feeding tubes myself. Do you have any data on what feeding tubes are actually like and whether they cause any long-term damage?

Thanks!

Fiona “Fi” Ding-Toob

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Dear Fi,

You are correct that as Parkinson’s disease progresses and as his motor skills diminish, it will likely become hard for your father to chew and swallow. If he’s unable to eat and drink like he used to, a feeding tube can help him get the nutrition he needs and lower his chances of choking or aspirating food particles into his lungs and developing pneumonia. For a feeding tube, he would need surgery for a gastric tube, the most common type, to run it through his stomach.

A feeding tube can be uncomfortable and even painful sometimes. If your father had a feeding tube, he would need to adjust his sleeping position and make extra time to clean and maintain his tube and to handle any complications. Still, he can do most things as he always has.

A feeding tube can remain in place as long as your father needs it, which would likely be for life since there is no cure for Parkinson’s and the symptoms get progressively worse.

Nasogastric (NG) Tubes are Another Type of Tube

In some cases, when a person is unable to tolerate solid foods by mouth, a nasogastric (NG) tube might be used to give nutrients. It can also be used to give medications, which can be really helpful for some medical situations. A NG tube is a flexible tube of rubber or plastic that is passed through the nose, down through the esophagus, and into the stomach. It can be used to either remove substances from or add them to the stomach.

NG tubes after surgery for inflammatory bowel disease (IBD) used to be common and were placed as a matter of course. It’s now thought that an NG tube is not always needed for every type of surgery or for every patient.

The NG tube is inserted up through the nostrils and down through the esophagus and into the stomach. The patient is usually told to swallow while the NG tube is being placed. The procedure is uncomfortable, but it shouldn’t be painful. The outside of the tube will be taped down in place on the skin so that it doesn’t become dislodged accidentally.

The Argument Against Feeding Tubes

The use of feeding tubes has gone down substantially in the past few years for Parkinson’s and advanced dementia patients. Here are some reasons why:

• Food is a source of pleasure: Feeding is such a primal activity, the first thing we do when someone is born and one of the last sources of pleasure as death approaches.
• Feeding tubes might be traumatic: 80% of people with Parkinson’s develop dementia in the final stages. A person no longer able to understand why a gastroenterologist is opening a small hole in his or her belly may find the insertion of a tube confusing and traumatic.
• Food is a source of social interaction: The mush that flows through feeding tubes eliminates the taste of food and the social interaction of hand feeding.
• Future medical problems (gastric tubes): Almost 20% of the time, the tube becomes blocked or dislodged within a year, requiring hospitalization. Patients may also try to pull it out, leading to physical or chemical restraints or, if they are successful, leading to potentially significant medical complications such as infections. Feeding tubes are also associated with an increased risk of pressure ulcers or bedsores, perhaps because they encourage inactivity or cause diarrhea; and these ulcers heal more slowly than in people without tubes.
• Future Medical Problems (NG Tubes): NG tubes can be very effective at treating some conditions and in administering medications, but they’re not without the potential for some less-than-desirable effects. People with an NG tube might experience some symptoms such as diarrhea, nausea, vomiting, or abdominal cramps or swelling. One of the things that can happen while the tube is being inserted is an injury to the esophagus, throat, sinuses, or stomach.2 It’s possible that if an NG tube gets blocked or torn, or if it comes out of place, there can be further problems. There’s also a possibility for any food or medicine being put through the tube to be regurgitated or to go into the lungs (aspirated).
• Feeding tubes don’t prolong life: As it turns out, feeding tubes don’t keep advanced Parkinson’s or advanced dementia patients alive longer. Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington show that they make no significant difference. After receiving a feeding tube, these patients with advanced debilitating diseases lived a median of 165 days, and two-thirds died within a year.

Why Some Might Think Feeding Tubes Are a Good Idea

Older adults nearing death still do receive feeding tubes, sometimes because families insist, sometimes because health care providers don’t offer enough information to help them decide.

Feeding tubes remain more popular in certain kinds of nursing homes, too. For-profit nursing homes use them more than nonprofits. In New England, fewer than 2% of residents are tube-fed. In parts of the South, the rate can run up to 10 times higher.

Higher Medicare reimbursement for tube-fed patients (and the labor costs of hand feeding) make some nursing homes more apt to recommend tubes.

In addition, many families can find it difficult to refuse a fairly minor surgical procedure that provides nutrition.

NG tubes can help prevent surgery in some cases, such as with an intestinal blockage. An NG tube is temporary, so it will only be in place for as long as it’s needed, which, in many cases may only be for a few days.

The question for your family to consider is whether quality of life is more important than being kept alive at all costs. And, that’s up to your father and your mother to decide and to record in their Advance Medical Directives.

Now is the Ideal Time to Plan

Now is a great time to be prepared, have conversations, and recognize the importance of planning ahead and/or ensuring the plans you have in place are still what you would want.

For anyone who does not have their planning in place, now is an ideal time to do so for many reasons, one of which is peace of mind. The Farr Law Firm is offering discounts to get your planning done (20% off all levels of planning for everyone until May 31, and 50% off of incapacity planning documents for healthcare professionals and first responders until May 31). Your parents can call the office at 703-691-1888 to make an appointment for a free virtual or in-person initial consultation.

Hope this helps,

Hayek