Tube feeding in motor neurone disease

Motor neurone disease (MND) is a progressive condition that results in muscle weakness. The disease can affect different parts of the body in different ways. The weakness can affect speech and swallowing as well as the limbs and the muscles that we use for breathing. In some patients difficulty in talking and eating may be the first signs, whilst others might have more problems walking or lifting their arms in the early stages.

Eventually however, almost all patients with MND will have difficulty in swallowing due to involvement of the nerves controlling the throat muscles. This makes it more difficult to eat and drink.

• Mealtimes take longer or are avoided and less food and fluid is taken, resulting in weight loss.
• As a result of a weak swallow, food or drink can go ‘the wrong way’ into the lungs and cause pneumonia.
• Weakness of the breathing muscles can make it difficult to cough or clear the airways if food or fluid does go into them, making it much more likely that pneumonia will occur.
• Reduced calorie intake due to feeding difficulties further weakens the muscles for swallowing and breathing.
• People may experience symptoms such as poor appetite and taste changes which can have an impact on eating and drinking and result in weight loss.

How are the problems assessed?

• Poor ability to swallow can be indicated by difficulty chewing food or coughing or choking whilst eating and drinking.
• If your voice sounds wet or gurgles after eating and drinking, it can often demonstrate that food / fluid is sitting in the back of your throat.
• You may just take an unusually long time to complete a meal.

When an underlying swallowing problem is identified, the speech and language therapist (SLT) will perform a detailed assessment of your ability to swallow. SLTs will make recommendations regarding the means of achieving nutrition safely through, for instance, changing the consistency of drinks or food or strategies to improve the safety of the swallow. Your SLT can discuss with you about continuing to eat and drink even if you have a feeding tube placed.

What are the options?

There may come a time when the above strategies are no longer effective to enable you to meet your nutritional needs. At this time you may wish to consider the following options.

• It may be necessary to feed through an artificial feeding tube. For example a nasogastric tube (NG) or a gastrostomy tube could be used, which allows sufficient food and fluid to be taken to maintain weight and wellbeing. (Please see the information relating to NG and gastrostomy tube feeding.)
• There are different types of gastrostomy but the most commonly used in motor neurone disease is a PEG (percutaneous endoscopic gastrostomy).

When is the best time to place a feeding tube in MND?

You may be understandably reluctant to have a gastrostomy placed unless absolutely necessary.

Introducing the subject of gastrostomy feeding may come as a shock, and you may be concerned that this indicates your condition is deteriorating. Planning ahead is important to ensure that the best care and most appropriate feeding options are considered. It is important that this is discussed in a timely manner, rather than leaving it until you are too unwell to have a gastrostomy inserted.

It is best if not too much weight has been lost before tube placement and before you are at risk of a chest infection due to aspiration (inhalation) of food / fluid into the airway. Once more than 5% of body weight has been lost, the risks of placing a gastrostomy are much higher. It is recommended that the tube should be placed before this time.

If you are no longer drinking enough fluids, a gastrostomy tube may initially be needed to purely meet your hydration needs.

It is preferable to place a gastrostomy before your breathing is too weak. It is important for us to assess your breathing to minimise the risks of the procedure. This may involve a range of respiratory function tests commonly performed at Papworth Hospital’s Respiratory Sleep and Support Centre, but which may also be performed on the ward or in clinic. These tests will also help the health care professionals looking after you to determine which gastrostomy feeding tube is suitable for you.

It would seem most sensible to place a gastrostomy as soon as it appears that there is likely to be a problem with your swallow so that it is there and ready, even if not required or only needed intermittently. However, if left too late, it may be very difficult to place safely.

If a gastrostomy cannot be placed for anatomical reasons, it is usually still possible to have a NG tube.

What are the benefits of having a feeding tube in MND?

Studies suggest that having a feeding tube can help improve your energy levels and also help with maintenance of body weight. Maintenance of quality of life is the main priority and is thus achieved by preventing complications associated with malnutrition and dehydration.

What are the risks of placing a feeding tube in MND?

The placement of a gastrostomy is a safer procedure if performed at a time when your general condition is good. When you are more unwell there is more risk of complications from the procedure (please see information relating to gastrostomy tube feeding).

What do MND patients feel about having a feeding tube placed?

Having a gastrostomy is a difficult decision to make. However, individual decisions will be completely respected.

Some patients may fear having a feeding tube because they are concerned that once it is in place it will be used indefinitely. Feeding can be stopped at any time.

It may be an appropriate time to discuss your wishes in the form of an advance statement / decision* to refuse treatment with a health care professional.

*For example, in the form of an ‘Advance Statement’ or ‘Living Will’. See information on assisted feeding and decision making.

To PEG or not to PEG: One man’s experience

‘Eating was beginning to get difficult, basically because I was losing my appetite (especially for anything savoury) and my weight was going down at a steady rate of one pound per week. But, like so many things about MND my first reaction was that it would all stabilise and not get any worse. How wrong can you be!

I was asked to consider a PEG feeding tube and, fortunately, agreed straight away. Even so, by the time it was fitted and in use, my appetite was such that I was forcing myself to eat every meal. Now, I still enjoy porridge most mornings and have actually started to put on a few pounds.

As for the operation itself, I have to admit that I was dreading it because of the physical implications of getting the PEG into my stomach I also imagined the transport of the PEG down my throat would destroy what little bit of voice I have left. In the event, neither fear was well founded and I am so pleased to be without the worry of having to eat.’

From an MND patient, with permission. Addenbrooke’s MND Care Centre.