Tube feeding – a monumental step in the eyes of a person with MND

26 November 2007

Inability to swallow properly is one of the most obvious and distressing problems in ALS/MND. At some stage many people living with ALS/MND and their carers must decide whether to use supplementary non-oral feeding by PEG.

The best time for this choice, in order to maximize quality of life, is unknown. In his presentation at the 18th International Symposium Dr Timothy Williams reported that many healthcare professionals fear that even the offer of PEG feeding may be construed as an unwelcome landmark on disease deterioration.

Dr Williams presented findings from a pilot study, led by Paula Leslie, which aimed to identify preliminary issues that patients consider when deciding whether to have a PEG for supplementary feeding.

This qualitative pilot study involved six patients: four people who decided to have a PEG and two who opted against it.

The pilot showed that the decision to have (or not) a PEG is a monumental step as having the operation may signal a feared move in the disease progression. In addition, having a PEG inserted can be a physical reminder of the illness and many fear they won’t be able to eat orally again. Patients want information at different rates – the healthcare team is perceived as most supportive when they appreciate this.

All the patients in the survey felt they had sufficient information and were satisfied with the timing it was given. Dr Williams said: “The patients all differed at the rate they wanted to receive the information. They also felt that it was important they were in control of how the information was given.”

Dr Williams told the delegates that patient’s preferences should always be incorporated in the decision making process.

When told by her neurologist that she needed a PEF fitted Dawn Tilley said: “I can’t help but look upon having a PEG fitted as the final stage of motor neurone disease. I’ve never heard people say anything positive about a PEG and many seem to get infections, which drag you down. The word PEG just terrifies me.”

Mel Barry Communications Manager
01604 611887/07918 652201
mel.barry@mndassociation.org

The 18th International Symposium on ALS/MND is taking place in Toronto, Canada, between Saturday 1 and Monday 3 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the ALS Society of Canada.

The MND Association says:

People living with MND may at some point need to consider the use of various medical interventions. These interventions can have a dramatic impact on the quality of life and length of survival for patients.

People living with MND need to consider very carefully whether the intervention is right for them and their carers. Most people know very little about what the interventions involve and what they and their carers may need to do to manage equipment and daily life.

It is therefore vital that patients and their carers feel fully informed about interventions such as gastrostomy feeding and nasal ventilation.

The MND Association is funding a King’s College London project that aims to find out what factors influence a person’s decision to accept or refuse non-invasive ventilation or a gastrostomy. The ultimate objective is to provide evidence on which to base strategies for making non invasive ventilation and gastrostomy more accessible for people with MND. The project is due to start early next year.