Understanding Swallowing Difficulties at the End of Life

Join SevenPonds each month as Tani Bahti, RN, CT, CHPN, offers practical on-hand guidance to demystify the dying process. As an RN since 1976, Tani has been working to empower families and healthcare professionals to have the best end-of-life experience possible both through education and the development of helpful tools and resources. As the current Director of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” considered by SevenPonds to be one of the most practical books on the topic. Founder Suzette Sherman says this is, “the book I will have at the bedside of my dying parents some day, hopefully a very long time from now.”

He’s choking!  When attempting to swallow the water needed for his medications, Bert began to cough violently as the water trickled down the wrong pipe.

Difficulty in swallowing is called dysphagia, and can be frightening for the person and the caregiver. The ability to swallow can change over time, especially in those with dementia, Parkinson’s disease, stroke, and those nearing death. Understanding the cause and the benefit and burden of interventions is important for comfort and safety.

Can you imagine waking up suddenly to someone pouring a drink into your mouth?

Before attempting to give medications or food, first make sure the person is fully awake and aware, and that the mouth is moist. If a person is dehydrated or producing less saliva due to the side effects of medications, the breakdown of the food in the mouth and the ability to swallow can be impaired, resulting in unwanted choking.

Imagine having a very dry mouth and someone offering you a handful of salted pretzels. You would not have the saliva to help break down the food, and you would be more likely to choke.  Soft foods or foods with gravy and sauces provide the moisture needed to make eating and swallowing easier, and lessen the energy needed to chew.  

Next, use positioning to help the body do it’s job in the safest way:

* Sit the person upright in an erect position, supporting with pillows as necessary.

* Tilt the head forward, with the chin down. This closes off the airway, directing food and liquid into the stomach. Using a straw helps in this position and gives the person more control.

* If your patient has any facial weakness (e.g. due to a stroke) make sure you place food into the stronger side of the mouth to promote careful chewing. This also gives those with cognitive problems time to realize there is something in their mouth and to respond appropriately.

* Offer small spoonfuls.

* Do not rush feeding. If the next spoonful is being held in front of the person, there is a tendency to rush to swallow before it’s time.

Thicker fluids are easier to swallow because they enter the throat slowly, allowing time for the pathway to the lungs to be closed off. Some people may choke on water, but do fine with thicker soups, shakes, and some juices. Another option is providing bulk to the liquid to make it easier for the person to feel in their mouth and provide time to prepare to swallow. Gum-based thickeners are usually more palatable than starchy powders. The bottom line is to try techniques and products to see what the person likes and can swallow safely.

Tube feeding

While there is a benefit to short-term tube feedings in some cases, they are not appropriate at the end of life. There are a number of reasons why this is true.

* Tube feedings increase the risk of aspiration. When the stomach is overfilled by artificial feeding, excess fluid can rise through the esophagus and then spill back into the lungs. Not only is this uncomfortable, the fluid in the lungs is now a breeding ground for bacteria that can cause pneumonia.

* Tube feedings can negatively impact quality of life due to increased discomfort and risk of infection.

* When the body is shutting down and unable to utilize the nutrients, tube feedings cannot improve nutrition. (Read more about the nutritional needs of those who are dying here.) Many studies have shown that tube feedings can actually hasten death rather than prolong life.

The swallow and gag reflex may be completely absent in the final phase of dying. Do not offer fluids at this time as there is no need. Instead, provide good mouth care (avoiding an overly wet sponge that may drip and cause choking), and keep the lips moist.

 Providing comfort and safety is the one thing that is not hard to swallow.

Take a look at a copy of Tani’s book “Dying to Know — Straight talk about Death and Dying” to help demystify the process and find words of wisdom on many aspects of dying.