Should I have gastrostomy for my nutrition and hydration in MND?

Information About Gastrostomy For MND

This decision tool is for you if:

  • You are having swallowing problems because of MND
  • Your appetite is poor, you are unable to maintain your weight, or you have become dehydrated
  • Eating and drinking has become tiring, or is leaving you breathless
  • Your MND health professionals - which could include your MND doctor (Neurologist, Rehabilitation Specialist, Palliative Care Specialist), GP, Speech Pathologist, Dietitian or MND Nurse - have recommended gastrostomy

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.

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, advanced malnutrition, needing physical assistance, or memory problems.

What are my options?

  Choose gastrostomy Don't choose gastrostomy
Health Benefits
  • Improve or maintain your nutrition and hydration
  • Maintaining your weight may be easier
  • Your energy levels may increase
  • Your life may be prolonged
  • Good nutrition and hydration helps maintain your physical and mental health for longer
  • Options to have medications through gastrostomy rather than orally
  • Maintaining hydration levels can overcome constipation and other complications associated with MND
  • You avoid a surgical procedure, with anaesthetic, a hospital admission, and the associated risks
  • Your life will not be artificially prolonged
  • Your personal wishes about end of life care are upheld
Health complications
  • Exposure and reaction to anaesthetic
  • Mild risk of infection and bleeding at the surgical site
  • Gastrostomy tube obstruction
  • Abdominal pain or discomfort
  • Possibility of gastric haemorrhaging
Complications after surgery can include:
  • Gastrostomy tube displacement
  • Infection at the insertion site
  • Your health may be compromised by malnutrition and dehydration.
  • An unsafe swallow increases your risk of chest infections and pneumonia
  • Body strength and functions, including skin deterioration may deteriorate if nutrition and hydration is inadequate
  • If you change your mind later on, you may reach a point where it is medically unsafe to undergo the procedure or you may get little benefit from gastrostomy
Benefits for quality of life
  • Eating is less prolonged, reducing fatigue
  • It may reduce the burden of feeling that you must eat
  • Better participation in family life and social activity
  • Improved sense of well-being
  • Some people may still be able to eat or drink small amounts for pleasure
  • Lifestyle and activity choices may improve
  • You don’t have to worry about the time and costs associated with gastrostomy feeding
  • May reduce carer burden
Disadvantages to quality of life Reliance on equipment for feeding and hydration may cause some people distress. Your daily routine may change to accommodate gastrostomy use and maintenance.
You may need daily assistance from others to manage your feeds, Including:
  • Services to set up and monitor gastrostomy feeds
  • Maintenance of the tube, including having to clean it daily, ensure it isn’t dislodged or blocked
  • Replacing worn gastrostomy tubes
  • Eating and drinking may become more effortful over time
  • You may experience distress with eating and drinking difficulties

Choose gastrostomy

  • Improve or maintain your nutrition and hydration
  • Maintaining your weight may be easier
  • Your energy levels may increase
  • Your life may be prolonged
  • Good nutrition and hydration helps maintain your physical and mental health for longer
  • Options to have medications through gastrostomy rather than orally
  • Maintaining hydration levels can overcome constipation and other complications associated with MND

Don't choose gastrostomy

  • You avoid a surgical procedure, with anaesthetic, a hospital admission, and the associated risks
  • Your life will not be artificially prolonged
  • Your personal wishes about end of life care are upheld

Choose gastrostomy

  • Exposure and reaction to anaesthetic
  • Mild risk of infection and bleeding at the surgical site
  • Gastrostomy tube obstruction
  • Abdominal pain or discomfort
  • Possibility of gastric haemorrhaging
Complications after surgery can include:
  • Gastrostomy tube displacement
  • Infection at the insertion site

Don't choose gastrostomy

  • Your health may be compromised by malnutrition and dehydration.
  • An unsafe swallow increases your risk of chest infections and pneumonia
  • Body strength and functions, including skin deterioration may deteriorate if nutrition and hydration is inadequate
  • If you change your mind later on, you may reach a point where it is medically unsafe to undergo the procedure or you may get little benefit from gastrostomy

Choose gastrostomy

  • Eating is less prolonged, reducing fatigue
  • It may reduce the burden of feeling that you must eat
  • Better participation in family life and social activity
  • Improved sense of well-being
  • Some people may still be able to eat or drink small amounts for pleasure
  • Lifestyle and activity choices may improve

Don't choose gastrostomy

  • You don’t have to worry about the time and costs associated with gastrostomy feeding
  • May reduce carer burden

Choose gastrostomy

Reliance on equipment for feeding and hydration may cause some people distress. Your daily routine may change to accommodate gastrostomy use and maintenance.
You may need daily assistance from others to manage your feeds, Including:
  • Services to set up and monitor gastrostomy feeds
  • Maintenance of the tube, including having to clean it daily, ensure it isn’t dislodged or blocked
  • Replacing worn gastrostomy tubes

Don't choose gastrostomy

  • Eating and drinking may become more effortful over time
  • You may experience distress with eating and drinking difficulties

What is most important to you?

Reasons to have gastrostomy

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


Reasons to decline gastrostomy

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


Your feelings

1. Indicate below how important you feel gastrostomy is for your care


2. Indicate if gastrostomy is an important choice for you right now


Result:

What are your thoughts about having Gastrostomy?

Check the facts

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


How certain do you feel about making your decision?

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?


What do you want to do now?


Result:

For More Information

References

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.

Acknowledgments

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

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