This decision tool is to help you and your family discuss your choices about gastrostomy with your MND team.
You may not feel ready to read all the information contained in this tool. If so, read the information you wish to know, at the best time for you. If you would like more detailed information, links to other resources are provided in the relevant sections, and in the resources at the end of this tool.
MND is a general term applying to progressive, degenerative disorders affecting the motor neurones. Motor neurones carry signals from the brain to the muscles. In people with motor neurone disease, the motor neurones deteriorate and can no longer carry these signals. This can weaken the muscles that control chewing and swallowing, and place people at risk of malnutrition and dehydration.
A gastrostomy tube is a feeding tube running from the outside of your abdomen into your stomach. It enables you to maintain your nutritional needs if you are having difficulty with chewing and swallowing food and drink. The tube allows you to be fed specialised liquid feed to ensure your nutrition and hydration needs are met. The most frequently used insertion technique is percutaneous endoscopic gastrostomy (PEG). This is performed by a Gastroenterologist. An alternative technique is percutaneous radiological insertion of gastrostomy (RIG). This is performed by a Radiologist. Your MND doctor or Gastroenterologist will advise you about the best gastrostomy procedure for your needs.
The procedure is performed under sedation, with patients completely asleep. The patient is usually in a reclined position during the procedure (although some people with more advanced breathing problems may need to be sitting up slightly). Non-invasive ventilation (such as BiPaP) can be used during some procedures for those who need help with breathing. A gastroscope, or fibreoptic camera, is introduced while the patient is asleep. An incision is made into the abdomen, and the tube is inserted through this into the stomach. The procedure takes around 30 minutes, and requires an overnight hospital stay after the procedure. While you are in hospital, the Nurses or Dietitian will talk to you about follow up care for after you leave hospital.
The external end of the tube sits outside your stomach, and is capped. It can be tucked under your clothes. Liquid feed, fluids and medications are fed directly into your stomach through the external opening of the tube. The tube lasts between one and two years, and can be easily replaced or removed. Feeds can be conducted during the day or overnight – talk to your Dietitian for more information about running and maintaining gastrostomy feeds and equipment.
Having a gastrostomy does not stop you from eating and drinking.
Many people are also able to eat and drink smaller amounts for enjoyment,
in addition to their gastrostomy feed. Your Speech Pathologist and Dietitian can
advise you about this. Safe swallowing techniques may allow you to eat and
drink small amounts safely; however, it may not be enough for adequate
nutrition and hydration. Discuss this with your Dietitian, Speech Pathologist and
MND doctor. Read more from MND Australia
Gastrostomy should be discussed with your MND health professionals as soon as
you notice you are having swallowing difficulties, you are losing weight
unintentionally, you are consuming less food and fluids than you usually
would, you are taking longer than expected to eat a meal, or you are
having problems resulting from dehydration, such as constipation. Guidelines
recommend early insertion of gastrostomy, to give the greatest benefit and to
reduce the risk of complications. A gastrostomy is best inserted when lung
capacity is strong (FVC greater than 50%). For some people, this will mean
having the gastrostomy inserted before it is needed. If lung capacity is not strong,
there may be greater risks of complications after the procedure. Talk to your
MND health professionals about when might be a suitable time for you to have a
Gastrostomy will not cure MND, or slow down or improve your MND symptoms. Research indicates that gastrostomy may extend the lives of people with MND by several months. However, how long it extends life varies greatly between individuals.
Your body needs adequate nutrition and hydration to function at its best. While your MND symptoms may not worsen, your ability to meet your nutritional requirements will become much harder without gastrostomy. This in turn can take a large toll on your body, which is already burdened by MND. People who are no longer able to eat or drink are given palliative care to ensure they remain comfortable as their life ends.
Some people may change their mind about using gastrostomy. If so, a gastrostomy tube can be easily removed. Removal requires another brief medical procedure, involving the same risks of medical complications as the insertion procedure. Talk to your medical team about removing your gastrostomy tube and withdrawing from artificial feeding and hydration.
The following issues may influence your decision. If you have any concerns, discuss them with your MND team:
respiratory muscle weakness,
needing physical assistance, or
1. I want to maintain my nutrition, hydration and weight
2. I want to spend less time trying to eat and drink
3. Gastrostomy could improve my quality of life
4. Gastrostomy could improve my length of life
1. Gastrostomy will not cure MND
2. I prefer to avoid the risks associated with gastrostomy insertion
3. I prefer to keep eating and drinking by mouth
4. I do not want to depend on equipment for nutrition and hydration
1. Indicate below how important you feel gastrostomy is for your care
2. Indicate if gastrostomy is an important choice for you right now
1) Having gastrostomy may prolong my life through adequate nutrition and hydration
2) Having gastrostomy will cure my MND
3) Having problems swallowing may put my health at risk
4) There are side effects to gastrostomy insertion
1) Do you know the benefits and harms of each option?
2) Are you clear about which benefits and harms matter most to you?
3) Do you have enough support and advice to make a choice?
4) Do you feel sure about the best choice for you?
If you are certain that you wish to proceed with gastrostomy insertion, please inform your MND health professionals about your decision as soon as possible. They can then arrange referrals and inform you about your local procedures.
If you are certain that you do not want gastrostomy insertion, please inform your MND health professionals so they are aware of your wishes
If you are uncertain about what to do or need more information, please read the additional information on the next page, or make time with your MND health professionals to discuss your options further.
Read more about gastrostomy, from MND Australia:
Hear from people with MND and their carers about their experiences in making decisions for nutrition and hydration: https://mytube.mymnd.org.uk/
Read the research findings from the ProGas Study, summarised by MND England, Wales and Northern Ireland: Know More
Katzberg, H. D., and Benatar, M. (2011) 'Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease', Cochrane Database of Systematic Reviews Rev 1, CD004030.
ProGas Study Group (2015) Gastrostomy in patients with amyotrophic lateral sclerosis. (ProGas): a prospective cohort study. Lancet Neurology, 14: 702–09.
Content developers: A Hogden, J Labra, N Burgess, A Owaimrin; our expert panel of patients, family carers, health professionals and researchers; and students S Andersen and P Zaghloul (Macquarie University).
Diagrams by Studio Lowbrow
Web development students (Macquarie University): J Hinton; E Matthews, S Liang, E Jetson, J Black; D Khan, A Chow, O James, A O’Donnell, R McGlone.
Format adapted from the Ottawa Personal Decision Guide © 2000, A O’Connor, D Stacey, University of Ottawa, Canada