Making the Decision

You may decide to have the Gastrostomy tube:

If you have the gastrostomy tube placed early while you are stronger and healthier, the procedure is more likely to have less health risks. You will likely find it easier to maintain your body weight and help slow down weight and muscle loss in the longer term.

If you leave your decision until your breathing and swallowing have become very difficult, it may mean that it is too late to safely do the procedure. This is why your doctor and dietitian may discuss the gastrostomy tube early in your MND journey.

Click to view our printable factsheet: ‘When should a gastrostomy tube be placed?’

Pros, Cons and Barriers to Decision-Making

Click to view our printable pros and cons list.

Click here to listen to Dr Allcroft discuss the pros, cons and alternatives to the PEG (7 minute video)

Click here to listen to Dr Myhill discussing common barriers to making a decision about the PEG tube (8 minute video)

Advance Care Directives

Advance care directives are a way to put your treatment preferences in writing for the future. You may like to speak to your General Practitioner or a member of your healthcare team at the MND clinic about your plans for treatment.

Some people with MND do not want any life prolonging measures and may view PEG feeding as a way to prolong life. Early conversations about your plans for feeding allows your wishes to be clear, even if you are not able to express them later as your MND progresses.

It is important to know that you can change or remove your advance care directive at any time. To find out more, speak to your healthcare team.

Dr Allcroft discusses Advanced Care Directives, end of life, and ceasing feeding (5 minute video)

Real Life Patient Experiences

Getting the PEG Early

Click to listen to Graham and Barb’s experience (6 minute video)

Click to listen to Peter and Polly’s experience (4 minute video)

Click to listen to Anna and Scott’s experience (4 minute video)

People who were unsure about getting the PEG

Click to listen to Karen and Gordon’s experience (6 minute video)

People who did not want the PEG

Click here to listen to Bill and Keryn’s experience and nutrition advice for if you do not want the PEG (5 minute video)

Weighing up the Pros and Cons

Seesaw Decision-making Tool

Below is a decision-making tool in the form of a seesaw. This will help you and your family weigh up the pros and cons of a Gastrostomy tube. Use this tool to help when it comes to thinking about your decision. Drag the pros and cons onto the seesaw depending on how important they are to you and your family. It may be useful to sit down with your family and do this activity together. If you find that you are struggling to drag the pros and cons onto the seesaw, get a family member or carer to help.

Pros: Cons:

Click to reset the tool
Help keep up my strength and energy levels
Reduce time and effort preparing and eating meals
Reduce risk of choking when eating, drinking or taking medications
Help me to eat for enjoyment, knowing that I can get the rest of my nutrition through the tube
It can be taken out if I change my mind
Reduce stress and anxiety for me and my family/carers if I am unable to eat or drink
Although hidden under my clothes, it will change the way my body looks
Involve a stay in hospital for 24 hours or longer
Result in some pain after the procedure
Involve a medical procedure which may have complications such as infections
Require extra help to use and look after the tube
I may not be able to take any medications if I cannot safely swallow

What do my answers mean?

Have a think about where you have put the pros and cons on the seesaw.

If you have put more pros on the ‘Important’ side, then you may be leaning towards having a gastrostomy tube.

If you have put more cons on the ‘Important’ side, then you may not want a gastrostomy tube at this stage or at all.

If your pros and cons are mixed OR mainly in the middle, then you might still be undecided.

You may have other personal pros and cons to consider. It may be useful to talk to your doctor, dietitian or speech pathologist about how you are feeling and if there are any other things you need to think about to help make your decision. It is important to discuss your feelings with your family as well.

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