Eating, Swallowing and PEG Feeding With MND

Eating, swallowing and PEG feeding with MND

There is a decision in motor neurone disease that almost everybody leaves too late, and the reason they leave it too late is that leaving it feels like the cautious option.

The decision is whether to have a feeding tube. The instinct is to wait — to keep eating normally for as long as possible, to avoid an operation, to not do anything drastic while things are still manageable. That instinct is entirely understandable and it is backwards. A gastrostomy is safer and easier to place early, when breathing and swallowing are still reasonably good, and it becomes more difficult and riskier as respiratory function falls. Waiting does not preserve the option. It erodes it.

MND Australia’s guidance puts the timing marker plainly: research suggests placement is most helpful before a lot of weight is lost — 5 to 10 per cent of normal body weight. For somebody who weighed 80 kilograms, that is four to eight kilos. Most people have lost that much before anybody has raised the subject.

This guide covers what happens to swallowing in MND, why weight matters more than it appears to, what can be done before a tube is considered, the gastrostomy decision in detail, what a tube does and does not fix, and the practical business of living with one. Swallowing changes after a stroke are a different clinical situation and are covered in swallowing and nutrition after stroke; the general mealtime support framework is in dysphagia and mealtime support.

What happens to swallowing

Swallowing involves the lips, tongue, soft palate, pharynx and larynx, coordinated with breathing, in a sequence that takes about a second and which you have never once thought about. MND can weaken any part of it.

Early signs, which are easy to dismiss:

• Meals taking much longer than they used to
• Fatigue by the end of a meal, or stopping before finishing
• Coughing or throat-clearing during or after drinking, particularly with thin fluids like water and tea
• A wet or gurgly voice after swallowing
• Food catching, or a sensation of something stuck
• Needing to swallow several times for one mouthful
• Food or liquid coming back through the nose
• Difficulty swallowing tablets
• Drooling, or saliva pooling
• Avoiding certain foods without quite deciding to — steak, bread, rice, anything crumbly

Two details worth knowing. First, thin fluids are usually harder than solids in neurological dysphagia, which surprises people. Water moves fast and is difficult to control; a thickened or textured consistency is easier to manage. So someone coughing on water but eating a sandwich is not being inconsistent.

Second, silent aspiration happens. Material can enter the airway without producing a cough, particularly where the cough reflex is itself weakened. The absence of coughing is not evidence that swallowing is safe. Recurrent chest infections, a low-grade temperature, or unexplained deterioration can all be the first sign.

Who to see. A speech pathologist assesses swallowing and advises on consistencies, techniques and safety. A dietitian manages nutrition, calories and weight. Both should be involved early in MND, not when there is a crisis. Which system funds them is unfortunately contested — the NSW MND Association argued that treating swallowing-related speech pathology and dietetics as purely a health responsibility makes no sense in MND, because swallowing muscle loss in this condition cannot be prevented, only managed. In practice, ask the MND clinic which route works in your state, and if one system refuses, ask the other.

Why weight loss matters more than it looks

This is the part that gets underestimated, so it is worth being direct about it.

Weight loss in MND is an independent predictor of worse survival. It is not simply a consequence of being unwell; it appears to contribute. There are several reasons.

Muscle is being lost anyway, and losing more of it to inadequate calories accelerates weakness in muscles the person still needs.

Energy expenditure is often raised. The work of breathing with a weak diaphragm, the effort of moving with weak muscles, and in some people a hypermetabolic state, all increase calorie requirements at exactly the time intake is falling.

Eating itself becomes expensive. A meal that takes 45 minutes and leaves somebody exhausted is a net energy loss. People stop eating not because they are not hungry but because it is too hard.

And the respiratory muscles are muscles. Nutritional depletion weakens the diaphragm along with everything else.

So the instruction is: weigh regularly and write it down. Weekly at home, on the same scales, at the same time of day. Take the record to every appointment. A trend over eight weeks is actionable information; “I think he’s lost a bit” is not. This is one of the few things a family can do that directly changes clinical decisions, and it costs nothing.

Flag any loss of 5 per cent or more of usual body weight, and flag it as a reason to start the gastrostomy conversation rather than as something to monitor.

What to try before a tube

Plenty, and for some people it is enough for a long time.

Texture and consistency changes. A speech pathologist will advise specifically. In general: softer, moister, more uniform textures; avoiding mixed consistencies like cereal in milk or soup with chunks; avoiding dry crumbly things; and thickening fluids where thin liquids are unsafe. Commercial thickeners are available, and naturally thicker drinks — smoothies, nectar, milkshakes — are sometimes more palatable than thickened water.

Positioning. Upright, chin slightly down rather than tipped back, well supported, in a chair rather than slumped in bed. Stay upright for 20 to 30 minutes after eating.

Swallowing techniques taught by a speech pathologist: a chin tuck, a double swallow, a supraglottic swallow, alternating solids and liquids, small mouthfuls.

Calorie density rather than volume. This is the single most useful dietetic principle in MND. If eating is tiring, the goal is to get more energy into less food and less time. Full-fat everything. Butter, cream, oil, cheese, nut butters, avocado added to whatever is being eaten. Milk made up with milk powder for extra protein. Oral nutritional supplements between meals, not instead of them.

Smaller, more frequent meals, so no single sitting is exhausting.

Timing around fatigue. Most people swallow better earlier in the day. A substantial breakfast and a light evening meal often works better than the reverse.

Equipment. Lightweight cups, cups with cut-out rims so the head does not have to tip back, built-up cutlery, non-slip mats, plate guards, mobile arm supports. An occupational therapist prescribes these and they can extend independent eating considerably.

Medication review. Tablets that are hard to swallow can often be changed to liquid, dispersible or patch forms. Ask the pharmacist, and ask before crushing anything — some medications must not be crushed.

Saliva management, because excess saliva makes everything harder. Anticholinergic medications for thin drooling; hydration, nebulised saline and mucolytics such as carbocisteine for thick secretions. Covered further in breathing and MND.

And mealtime support plans, where a support provider is involved. If somebody has dysphagia and paid workers assist with meals, there should be a written mealtime management plan from the speech pathologist, and it should be followed exactly. This is a high intensity support with a real risk attached, and it is one of the areas where providers are expected to demonstrate specific competence.

The gastrostomy decision

A gastrostomy is a tube placed through the abdominal wall directly into the stomach, allowing liquid nutrition, fluids and medications to be given without swallowing.

Two placement methods.

PEG — percutaneous endoscopic gastrostomy. An endoscope is passed through the mouth to guide placement, and a small incision made in the abdomen. It takes 30 to 60 minutes under sedation.

RIG — radiologically inserted gastrostomy. Placed using X-ray guidance with local anaesthetic to numb the abdominal skin, without an endoscope down the throat. MND Australia notes that this approach is generally for people with breathing problems, because it avoids sedation and the airway compromise an endoscope involves.

Which one is used depends on the person’s respiratory function and anatomy, and the doctor decides what is safer. The relevant point for timing is that respiratory function is what determines whether either is safe — which is why the decision cannot be deferred indefinitely.

Why early is better. MND Australia’s guidance says placement is safer when breathing and swallowing are not badly affected, and that earlier placement may help the body heal faster and shorten the hospital stay. Combined with the 5 to 10 per cent weight-loss marker, the practical reading is: the conversation should happen when the person is still eating reasonably, still has decent respiratory function, and has lost a little weight rather than a lot.

What to ask. Australian research into what helps people with MND make this decision found that information, time, and the chance to discuss it properly matter more than any single fact. Specific questions worth putting to the team:

• What is my current FVC, and does it still allow safe placement?
• Would you recommend PEG or RIG for me, and why?
• How much weight have I lost, and over what period?
• What does the procedure involve, how long in hospital, and what is the recovery like?
• What are the risks for someone with my respiratory function?
• Can I still eat and drink by mouth afterwards?
• Who manages the feeds, and who trains my family or support workers?
• What does it cost, and who pays for feeds and consumables?
• Is there a hospital nearby experienced in MND gastrostomy, with respiratory support available?
• What happens if I decide not to have one?

That last question deserves a straight answer, because declining is a legitimate choice.

What a tube does and does not fix

Being clear about this prevents both unrealistic hope and unnecessary refusal.

What it does. Provides reliable nutrition and hydration. Allows medications to be given easily. Supports bowel regularity. May reduce the risk of food and fluid entering the lungs. Removes the exhaustion and anxiety of long, difficult meals, and removes the hours of preparation and supervision from the family. For many people the relief of not having to fight through three meals a day is as significant as the nutrition.

What it does not do. It does not stop MND progressing. MND Australia’s factsheet is explicit on this point. It does not fix breathing. It does not restore swallowing. And the evidence that it extends survival is not clear-cut — the factsheet notes that keeping weight stable may help some people live longer, which is a more careful claim than “a tube extends life.”

What it does not prevent. You can still aspirate saliva and refluxed stomach contents with a tube in place. A gastrostomy reduces one route of aspiration, not all of them.

And it does not mean you stop eating. This is the misconception that puts people off most. Most people with a gastrostomy continue eating and drinking by mouth for pleasure — the tube takes the pressure off, so that a meal can be about taste and company rather than about getting enough calories in. A speech pathologist and dietitian will advise on what remains safe. For many people this is the best part of the arrangement.

Living with a tube

Practical detail that rarely makes it into the decision conversation.

Feeds. Either bolus feeds — a syringe of formula several times a day, taking 15 to 30 minutes each — or pump feeds run continuously or overnight. Overnight pump feeding suits people who want their days free. Bolus feeding is simpler and needs no equipment.

Site care. Daily cleaning and checking. Rotating the tube as instructed. Watching for redness, discharge, pain, leakage or overgranulation. Most problems are minor and manageable if caught early.

Flushing with water before and after feeds and medications, to prevent blockage. Blockages are the commonest practical problem and are almost always preventable with flushing.

Medications given through the tube need to be in a suitable form. Ask the pharmacist. Not everything can be crushed.

Replacement. Most tubes need replacing roughly every 12 months, usually a simple procedure with no hospital stay. Once the site has healed, a low-profile button can replace the external tube, connected only during feeds — considerably less obtrusive and easier to dress around.

Complications include site pain, infection, bleeding or tenderness, blockage, and occasionally the tube being dislodged. Sedation can also cause problems afterwards. Know who to ring and when: a dislodged tube needs attention within hours, because the tract can close.

Who does it. Family members and support workers can be trained to manage feeds. Under NDIS arrangements, enteral feeding support is a high intensity support requiring specific worker competence, delivered under a plan from the relevant health practitioner, with training and sign-off documented. Ask any provider directly who has been trained, by whom, when, and what happens on a shift where the trained worker is unavailable. See enteral and PEG feeding support for the general framework, and supported independent living with MND for how it fits into a package of care.

Funding. The feeds themselves, the pump, giving sets and consumables may come through the health system, the NDIS, or a combination, and it varies by state. Ask the MND clinic and the dietitian who supplies what locally, and get the answer before discharge rather than after.

Keeping eating worth doing

A section that gets left out of clinical material and that people with MND raise constantly.

Eating is not only nutrition. It is the family meal, the pub lunch, the birthday cake, the cup of tea somebody makes you. A condition that makes eating difficult does not only create a dietetic problem; it removes one of the main ways people stay part of ordinary life. And the standard advice — modified textures, thickened fluids, smaller portions, more time — is correct and makes meals less pleasurable at exactly the point when there is less to enjoy.

Things that help, from families who have worked it out:

Separate the two jobs. Once a gastrostomy is in place, nutrition is handled by the tube and eating becomes recreational. That is the single biggest improvement available, and it is an argument for the tube rather than against it. Many people describe their relationship with food improving after the tube, not worsening.

Make the modified food good. Thickened fluids taste better as proper smoothies, milkshakes, lassi, nectar or soup than as thickened water. Pureed food tastes better when things are pureed separately and plated properly than when everything is blended together. A dietitian with some imagination is worth asking for.

Keep the social part even where the eating part shrinks. Sitting at the table with a small plate, or with nothing, is different from eating alone in another room. Families who stop eating together because it has become awkward usually regret it.

Protect the tastes that still work. Strong flavours, cold things, something sharp. Taste is unaffected by MND and it is a pleasure that remains available when a great many others have gone.

Alcohol, if the person wants it and swallowing allows, is worth asking about rather than assuming is off the table. A thickened beer is not much of a thing, but a good glass of something with a straw may be.

And ask what they actually want. Some people want to keep eating by mouth for as long as physically possible and accept the risk; others are relieved to stop. Both are legitimate positions, and in a condition where almost every decision is taken away by the disease, this is one that should stay with the person.