If you have a patient at the end of life, you need to read this article. For that matter, if you’ve ever had a patient at the end of life, you need this information.
End of life nutrition comes with a complex set of physical issues. Dysphagia is a common issue at the end of life, especially if the patient has a history of it.
End of life inability to swallow issues cannot always be corrected. But the Dietitian can build a dysphagia care plan to reduce discomfort and manage the swallowing issues.
On a side note:
As a Dietitian, if you don’t feel fully comfortable talking about end of life nutrition, I suggest you click here to read this article. You can also click here to check out an eBook and course on End of Life Nutrition.
Here is another article written on end of life nutrition discussions that you can read after this article! If you want a broad overview on the Dietitian’s role in end of life nutrition, I suggest you go through those.
This article will largely focus on the end of life inability to swallow issue.
What Does End of Life Mean?
End of life means that a patient has 6 months or less to live. This is a clinical prediction made by a Physician. In my experience, this has been typically pretty accurate.
The patient may be suffering from a chronic condition, disease progression, or advanced age. All of which can contribute to end of life.
There is not always an obvious reason why end of life is occurring. Sometimes it is just that the patient is elderly and the body is shutting down.
Here is a great article I was able to contribute to relating to nutrition signs at the end of life. It can give you more information on signs of end of life.
End of Life Nutrition: What Are Common Issues?
Some common issues we see in end of life related to nutrition are:
Decreased food and fluid intake
Decreased interest in food and fluids
Increased fatigue, sleeping more
Increased eating assistance needed
Inability to swallow and Dysphagia
The end of life nutrition issues are a domino effect. When one starts to happen, it gives way to the next issue.
Take for example, decreased interest in food and fluids. A person may start saying no to attending meals, eating food, drinks, and wanting to stay in bed more. This will obviously lead to decreased intake and result in weight loss.
This is all very normal behaviour and we do expect to see it as the end of life comes.
As the end of life comes, the body only holds onto essential functions. The digestive system isn’t essential at the end of life. This is why we see decreased intake.
As this is all natural, we don’t want to push a patient to eat and drink more than they want. If a patient is pushing away food and drinks, we should respect that.
This however does not mean that we don’t do any nutrition interventions. Nutrition interventions address the symptoms and aim to provide comfort.
Dysphagia and End of Life
Why does Dysphagia happen at the end of life?
Throat muscles weaken overtime and can lead to Dysphagia. Dysphagia is essentially the difficulty or the inability to swallow.
We see swallowing difficulty as high as 79% of end of life patients.
Dysphagia can be caused due to many issues, especially at the end of life. Some common causes are:
Age related – throat muscles weakening
Disease condition (Dementia, CVA, Stroke, Throat cancers, Parkinson’s Disease, Cognitive function)
Severe Dementia is an incredibly common cause!
As you can see from the common causes above, most will lead to the end of life from their effects or side effects on the body. The timelines will be different but if the majority have Dysphagia, it will be progressive in nature.
It is especially important that if a patient has a history of Dysphagia, the Dietitian follows them through to end of life care.
The end of life inability to swallow can be the cause of Dysphagia or it can also be due to a physical obstruction.
It is very important that the cause of the inability to swallow is investigated. If it is a physical obstruction, this needs to be dealt with.
If it is related to one of the common causes above, the Dietitian will manage the symptoms. None of the nutrition interventions will cure the cause, but it can manage it.
End of Life: Inability to Swallow
If the inability to swallow is related to end of life, the Dietitian will still propose nutrition interventions. The Dietitian will also continue to develop a nutrition care plan for the end of life.
End of life does not mean end of care, it means managing symptoms associated with end of life.
Some common conditions associated with the inability to swallow at the end of life are:
Muscle wasting (Also called Cachexia)
Muscle weakness (Mainly throat)
Cognitive function (Coordination of the swallowing muscles)
Some common things to look for are:
Coughing during eating or drinking
Wet sounding voice
Eyes watering (This can be a sign of discomfort from difficulty)
Choking on food
Pocketing of food in the mouth
You can see this monitoring sheet that will give you an idea of more signs and symptoms to look for. Look at the Meal Observation Screen form for more.
If a person has an ability to swallow, the common question is, how do we manage it?
Managing End of Life Inability to Swallow Issue
The Dietitian can continue with the current nutrition care plan for the individual until it needs to be changed. The patient should be followed on a regular basis as their care needs may change on a regular basis.
I tend to follow patients at the end of life on a daily basis, or whenever I am in a facility. This can involve a simple check-in with the nurses asking how the patient is doing.
The Dietitian doesn’t need to do a full nutrition assessment constantly. But they do need to be aware of any swallowing difficulty that arises. Or a change in swallowing condition.
The patient’s cues should be followed when adjusting their care plan. If a person is having noted signs of difficulty swallowing, then feeding and giving fluids should be stopped at that time.
It doesn’t need to be stopped for good, but during that particular meal, it should be.
Adjusting the diet textures and fluid viscosity should be considered. This could involve downgrading diet texture to something easier for them to manage.
A softer diet texture requires less effort on behalf of the patient to chew. The Dietitian can also adjust the fluids to reduce the risk of aspiration pneumonia.
The patient may be at the end of life, but we do not want to increase their risk of getting an illness.
If a patient continues to accept food and fluids, they can and should continue to be offered.
But a few directions should be followed:
They are awake and alert
They are always seated in an upright position, 90 degree angle
They are accepting
They don’t show signs of swallowing difficulty
What if a Patient Stops Eating and Drinking?
If a patient stops eating and drinking, this should be respected. It is a natural part of the dying process.
They can still be asked if they want anything, but if they say no, this is a choice.
End of life is a complicated time and it requires weighing quality of life with a long term care dietitian’s expert opinion. Quality of life should always be weighed more heavily.
The end of life inability to swallow issue will always present itself in the final days of life. Instead of food and fluids, loved ones and staff can do mouth care to keep the mouth moist.
The focus of the nutrition care plan at the end of life should always be comfort. Remember to focus on that at all times.
Michelle Saari is a Registered Dietitian based in Canada. She has a Master's Degree in Human Nutritional Sciences and is a passionate advocate for spreading easy to understand, reliable, and trustworthy nutrition information. She is currently a full time online entrepreneur with two nutrition focused websites.