What is Dysphagia?
Difficulty swallowing is referred to as dysphagia. It can be caused by a variety of conditions including neurological disorders (e.g., Parkinson’s), dementia, stroke, learning disability, general ageing, and general acute illness.
If you or your relative has dysphagia, there may be a risk of food, drinks, or saliva “going down the wrong way” and entering the windpipe or lungs. This is known as aspiration.
Aspiration can be uncomfortable for you or your relative and can result in coughing when eating and drinking. Sometimes aspiration can occur with no immediate or obvious signs or symptoms. This is known as silent aspiration.
Frequent aspiration can lead to an infection in the lungs called aspiration pneumonia. In some cases, severe pneumonia can be fatal.
Speech and Language Therapists specialise in the assessment and treatment of swallowing problems by helping to identifying the cause of dysphagia and consider ways to reduce the risk of aspiration. They often suggest modified foods and fluids or strategies to promote safer swallowing.
For some people, the use of compensatory strategies cannot prevent the risk of aspiration when eating and drinking.
What is Eating and Drinking with Accepted Risk (EDAR)?
When swallowing is unsafe patients may be advised to be Nil by Mouth.
Doctors may discuss appropriate alternative options such as a short term naso-gastric tube (NGT), to provide non-oral nutrition and hydration. A Nasogastric Tube is a tube inserted through the nose and down into the stomach.
However, this is not always the most suitable or appropriate decision, for a number of reasons:
- If the person has a deteriorating condition
- If nearing the end of their life,
- The person may have previously expressed a wish not to have tube feeding.
- Being nil by mouth or accepting a NGT may be too distressing
In such instances, a decision may be made to permit eating and drinking if it is in the best interest of the person, and to maintain a quality of life, despite there being a risk of choking or aspiration (food or drinks going down the wrong way).
This is known as Eating and Drinking with Accepted Risk, or EDAR for short.
Why would we make this decision?
- Tube feeding is not suitable for everyone and may be distressing.
- There may be risks due to other medical conditions,
- The risk of tube feeding may be greater than the benefit.
- Personal choice – tube feeding may not be the preferred option for you or your relative and eating and drinking is appropriate to maintain quality of life
What are the benefits?
- Allowing yourself or your relative to continue getting pleasure from eating/drinking
- Can help to promote a better quality of life and be able to enjoy the social aspect surrounding eating.
- No procedure required
What are the risks?
- Risk of coughing, choking, aspiration and associated chest infections (aspiration pneumonia) that can be fatal.
- May increase frequency of hospital admissions.
- May have reduced intake, therefore risk of poor nutrition, weight loss, dehydration.
Making a Decision
We will discuss the information around nutrition and swallowing difficulties with you as the patient or your family member. The things we will talk about may include:
- the cause of the swallowing difficulty
- if any treatment may improve it
- whether the unsafe swallow is likely be remain long term or worsen in the future.
We will also provide information around the risks and benefits appropriate to your individual situation. This will help clarify your thinking about what option would be best for you or your family member. We will also discuss options of modified foods and fluids to determine the textures that would:
- be least restrictive and allow you or your relative to gain pleasure from a wide range of foods and fluids
- try to reduce any distress (coughing or choking) or discomfort associated with eating and drinking
We will always consider any advanced decision made by the patient when they were of sound mind, and any previously expressed wishes discussed by the patient.
Who is involved?
- Speech and Language Therapist
- Medical team (Doctor or Consultant)
- Specialist Nurses supporting your care
- Yourself, if you have capacity to fully understand the risk and make the decision yourself
- Relatives and next of kin either to support you making your decision or to make the decision in your best interests (if there is any concern about individuals’ capacity e.g., due to dementia learning difficulty, head injury, or delirium due to acute illness).
It is important to consider what is the right decision for you or your family member. It is a very individual decision.
You can also change your mind at any point, but this would need require further discussion.
Make sure you consider all options available. Think about how much you value the enjoyment of food and drinks compared to how strongly you wish to avoid episodes of aspiration and hospital admissions.
For more information, please contact:
NUTRITION AND DIETETIC SERVICE
Queen Elizabeth Hospital
Gateshead Health NHS Foundation Trust
Sheriff Hill,
Gateshead,
NE9 6SX
SPEECH AND LANGUAGE THERAPY DEPARTMENT
Queen Elizabeth Hospital
Gateshead Health NHS Foundation Trust
Sheriff Hill,
Gateshead,
NE9 6SX