PEGs, RIGs and ventilation

When motor neurone disease affects the throat muscles, people may have difficulties with talking, swallowing and breathing. (See also 'Eating, swallowing and breathing' and 'Speech and communication'). Here we look at some of the interventions which can help with swallowing and breathing. 

PEGs and RIGs.

Many people living with MND find they can continue to eat ordinary foods for a long time by being careful about what they eat and choosing softer foods, including purees and liquids. If eating and swallowing become more difficult, one option is to have a feeding tube inserted directly through the stomach wall - a PEG (Percutaneous Endoscopic Gastrostomy), or a RIG (Radiologically Inserted Gastrostomy).The difference between them is the way they are inserted, but the end result is the same. They are usually inserted under a local or a light general anaesthetic. A nasogastric feeding tube (passed through the nose and down the throat) may be used as an emergency measure, but is unlikely to be recommended for long term use.

Not everyone wants to have a feeding tube, and this has to be a personal decision. Discussing the options with a speech and language therapist and dietitian will help people make an informed choice.

She was advised to have a PEG because of weight loss. She decided not to have one and feels that was the right decision for her. The way it was suggested frightened her.

Several people we talked to had decided to have a PEG or RIG, though not all were using it yet. People were commonly advised to have it done while they were still relatively fit and before they lost a lot of weight, so they would recover well from the procedure. Several said it was reassuring to know the tube was there ready if they did need it. Some people continued to eat some foods by mouth as well as using the tube.

She had a PEG fitted while her lung capacity was still good - the procedure was simple. So far she has not used the PEG, but it's there if she needs it.

This woman found the procedure very straightforward and recovered quickly. Some people took longer to recover and a few developed an infection at the site. Sometimes the 'stoma' or hole (through which the tube passes) tries to heal over. This needs to be treated to stop skin regrowth. One person had to have the tube replaced repeatedly because it kept perishing, which is very unusual. (Different types of PEG tube are used; some last longer than others). 

Her PEG was fitted early, to prevent weight loss. She has had two infections, but now hardly notices it. She wonders if it will need replacing before she needs to use it.

His wife was advised to have a PEG. They were very happy with the care. However, the tube had to be replaced several times because it kept perishing. No-one can understand why.

A few people had more problems with the procedure itself or with the care afterwards. Sometimes speech difficulties made problems worse because they made it hard to communicate with staff. (See also 'Speech and communication'). One woman said her mother found that lying flat made her want to choke, but staff caring for her seemed not to consider this. Another said staff treating her husband found it hard to insert the endoscope through which the PEG tube was to be passed, because his swallowing reflex was affected. However, other people with swallowing problems had no difficulty with this part of the procedure. 

He had problems with the PEG procedure because he couldn't swallow the endoscopic tube and he couldn't talk to staff. Eventually he had a general anaesthetic and it was fine. [Mike is unable to speak].

They were surprised he was discharged so soon after the PEG procedure. No-one showed them what to do. He was in a lot of pain and could not swallow painkillers. [Ken is unable to speak].

She couldn't tell staff how much pain she was in after the RIG procedure. She could still eat but no-one asked her if she would like any food. Recovery was slow. [Voice software interview].

Some people who relied completely on the PEG or RIG for feeding described how they tried to fit it round the family's normal meal-time routine. One man even had supplies of feed sent out in advance to Portugal so he could go on holiday without worrying about taking supplies with him. Another had found it quite easy to obtain a supply of vegetarian feed.

They sit round the table together for meals and Ken does his PEG feed. At Christmas he stuck jokey labels on the bottles. [Ken is unable to speak].

They want to be as independent as possible. Mike has a portable pump for his PEG so they can take it with them to restaurants to eat with friends. [Mike is unable to speak].

The MND Association generally advises people to put only the specially prepared feed through the tube, and not other forms of fluid, including liquidised food, in case the tube gets blocked or damaged. 

Sometimes crushed tablets get stuck in the PEG tube. One day when he was trying to put cod liver oil through it exploded all over the room. [Ken is unable to speak].

People can sometimes take medication through their PEG or RIG tube, for example by crushing up riluzole tablets, but they have to be very finely crushed so they do not cause a blockage. A few people wondered why a liquid form of riluzole was not yet available. Other medication may be available as skin patches or in liquid form. (See 'Medication, trials and research').

The tube needs to be flushed daily, even if it is not being used for feeding yet. It also needs to be turned regularly. Some carers said that at first they found it daunting and frightening to have the responsibility of keeping the PEG functioning but they got used to it. One woman said at first it was, “Like an alien that's come in to live with you in a way. But it's so commonplace now.” Some said they came across other staff such as district nurses or hospice staff who needed more training in looking after people with a PEG. 

She felt worried and unprepared for dealing with her mother's PEG. To be feeding the person who had always nurtured her seemed a strange role reversal.

Some people found the tube sticking out under their clothes annoying or uncomfortable. One woman had made a little fabric pouch to cover the end of her husband's PEG tube so it wouldn't dig into his skin when lying down. Another was planning to get a different type of tube which sits flat against the skin.

Ventilation

Experiencing breathing difficulties and choking fits could be both very tiring and frightening. (See also 'Eating, swallowing and breathing'). 

Several people had managed well with non-invasive positive pressure ventilation or NPPV. Non-invasive ventilation uses a small machine (sometimes called a Nippy) to support the person's own breathing, by providing extra air through a face mask or nasal tubes. Ventilation can also help support the diaphragm and make it easier for people to speak.

Non-invasive ventilation has made a big difference. It helps her sleep properly at night and during an afternoon nap, so she has enough energy for the evening.

He uses a ventilator most of the time, which enables him to speak normally. He has adapted well to it, but can't be left alone for too long.

For carers, it can take some getting used to when their partner uses a ventilator. One woman said she had moved out of their shared bedroom at that point, “Because it's like someone hoovering all night to my mind - no thank you!” Another said she had now got used to the sound.

She felt she had become a carer when her husband needed to use ventilation every night. It was strange when he started using it but she is used to it now.

Most people we spoke to were comfortable with the idea of non-invasive ventilation, although not everyone will want to consider supported breathing. (See also 'Hospices, respite and thoughts about future care').

Non-invasive ventilation hugely improved her husband's quality of life, but now they realise how dependent on it he is they are having to think about future options.

The option of full or invasive ventilation raises further issues. When invasive ventilation is used, the person's breathing is taken over altogether by a tube which is passed through a hole (tracheotomy or tracheostomy) directly into the person's windpipe (trachea). One man explained that he had discussed with his wife beforehand what interventions she would consider and where she would draw her 'line in the sand'. Having a PEG was already close to this line for her, but invasive ventilation would have been against her wishes. 

As Teresa became weaker, a PEG was suggested. She developed breathing difficulties and had non-invasive ventilation but would not have wanted invasive ventilation.

People's views about what care they wanted in future and the use of 'Living Wills' (also known as Advance Directives or Advance Decision to Refuse Treatment [ADRT]) are explored further in 'Hospices, respite and thoughts about future care'.

Further information sources: