NG tube feeding when someone has anorexia: parents’ questions

Huge gratitude to Paola Falcoski and Sarah Fuller for this guest blog. They are both specialist eating disorders dietitians.  They currently work for a children and young people’s eating disorders service and have both worked in specialist eating disorder units in England. They’re both authors of the papers and guidance listed further down.

First of all, as parents you should know you can be included in the decision-making:

Are parents and their child involved in the decision to tube-feed under restraint?

In a 2023 paper, Sarah Fuller et al investigate a range of ways in which mental health units involve parents and patients… or not. They outline the pros and cons when:

• Clinicians make a quick decision to tube-feed — e.g. for life-saving treatment, or to get on with medical treatment.
• Clinicians take longer to decide, giving alternatives to tube-feeding a chance, with or without multiple consultations of the clinical team, parents and the young person

Both approaches exist in various units. In the end, they opt for this suggestion:

"One suggestion for good practice […] is to encourage shared decision-making and involve the patient in the decision-making process from the very start of admission, so they are clear why and when a restrictive practice such as NGT feeding under restraint may be needed. Enabling the patient to discuss with clinicians their views and wishes well in advance of any conflict can inform decisions while also ensuring the patient is well informed, should the situation arise. […]

Joint care planning on how to manage distress leading up to a restraint feed and strategies to manage distress during the intervention and to aid de-escalation after it would also help the patient and minimise the lenth of time they require the intervention."

Decision-making and best practice when nasogastric tube feeding under restraint: multi-informant qualitative study (2023) by Sarah J Fuller, Jacinta Tan and Dasha Nicholls.

OK, now let’s hear directly from Paola Kalcoski and Sarah Fuller:

I am terrified that my child might be tube-fed.  Is it really necessary?

If your child is not eating and/ or drinking anything orally, or is not achieving their nutritional requirements and continues to lose weight, the use of an NG tube should be discussed with you and your child. The aim of NG feeding is to keep your child medically safe and provide appropriate nutrition to aid their recovery. 

It is well known that being in a starved state, regardless of a person’s weight, will not only impact their physical health but also their mental health.  For example, starvation can lead to low mood, increased anxiety and rigid thinking.  This in turn makes it harder for someone to eat and drink when their illness is telling them not to. Having this starved state reversed by a few days of NG feeding can rapidly result in more rational thinking, less anxiety and allow someone to re-establish regular eating without the need for additional NG feeding.

If your child’s life is in danger i.e. their physical health is so poor that there is a risk of death, the team may consider this essential and non-negotiable.

Isn’t it very painful and scary?

The NG tubes are made from soft plastic, designed to be flexible. The passage of the tube can be uncomfortable but should not be painful or scary. The nurse who passes the tube is experienced in this procedure. The nurse will explain the procedure, and there are other staff member supporting your child. If your child is consenting to this procedure, then they will be encouraged to drink a glass of water at the time to help pass the tube.

Why would my child accept tube-feeding when they are refusing food?

There may be many different reasons why someone can accept their nutrition via the NG tube and not be able to eat. Some young people report that having all nutrition via the tube makes them feel less guilty, others say that it is less scary than having to eat. A young person may find it easier to see nutrition as essential and not a choice, because NG feeding is considered a medical procedure.

Sadly, we do know that the nature of anorexia nervosa can be very competitive and we have seen that at times, when one patient is needing NG feeding, a number of other patients start to struggle with their eating and as a result they then need NG feeding themselves.

Will my child get to rely on the tube and find it even harder to eat?

Even though your child may have needed NG feeding, normal meals, snacks and drinks will still be offered every meal/snack time and they will still get the same staff support at these times.

If someone has not been able to eat or drink, despite staff support, the dietitian within the team will work with you and your child on a plan to reduce the need for NG feeds and gradually reintroduce a normal diet.

What if my child refuses the NG tube?

If your child refuses the NG tube and their physical health is compromised, the multidisciplinary team (MDT) team might request that your child gets a mental health act assessment which will determine if your child has capacity to refuse this part of their advised treatment.

If someone is detained under the Mental Health Act (or equivalent legal framework in other countries), this means that staff can pass the NG tube and feed them without their consent.

Any decision made by the MDT will be in your child’s best interest.

I have heard of 5 nurses pinning a young person down to tube-feed under restraint. Does that really happen?

Staff would never ‘pin down’ a patient.

Unfortunately, some young people can become very distressed during NG feeding (due to the fear of being fed and/or gaining weight) and staff members may need to apply physical interventions to maintain the person’s safety as well as staff safety.  These interventions can range from holding the person’s hands so they do not pull out the tube, to holding person in a safe seated position. Depending on the young person’s response to NG feeding they may require the support of one or several members of staff.

Staff have to be trained on specific restraint techniques to ensure the person’s safety during the feed. 

Can my child be given medicines to make NG feeding easier?

Yes, some children and young people can take medication before the feed to help them stay calm for the intervention.  These medications would be prescribed by the psychiatrist on a case-by-case basis and the need for this would be reviewed regularly.  However, they may also make the person sleepy for a period of time after the NG feed.

My underweight child has been tube-fed for months, with zero weight gain. Is that acceptable?  

The use of NG tube feeding is normally intended to be a short intervention to support physical health restoration. If your child is not gaining weight, other factors might be at play, for instance not enough calories, excessive exercise, vomiting…  The need for NG feeding should be reviewed daily by the multidisciplinary team (MDT). 

Some patients may be so distressed at the thought of weight gain that sometimes a team may consider NG feeding to ensure they do not lose weight while they work to engage the patient in treatment.

How often should my child have the NG tube inserted and removed?

Your child’s treatment team will review this on a regular basis. Some young people have their tube inserted and removed daily (usually when there are risks of ligaturing or self-harm using the NG tube) whilst other may have the tube in place for up to 28 days at a time.  NG tubes may need to be removed and passed down the other nostril if someone has developed a pressure sore from their tube. Also, tube manufacturers stipulate how often their tube needs to be changed.

How many times a day should my child get a feed through the tube?

If someone is accepting NG feeding without needing staff support to maintain their safety, many units will offer a small bolus of feed after each meal or snack that they have not been able to manage. However, is someone is resisting NG feeding and they are detained under the Mental Health Act this stipulates that the team must follow ‘the least restrictive practice’ and therefore the number of feeds should be reduced to one or two per day.

Why are some children on a continuous feed, others on gravity, others on syringe – what’s the difference?

The main difference is in the time taken to deliver the nutrition.  The fastest way is via a push syringe bolus. When feeding by syringe bolus, a nurse gradually pushes the feed into the tube using a syringe. The next fastest method is by gravity bolus, where the feed flows out of a syringe, or a bag, into the tube by gravity. Enteral pumps, on the other hand, deliver a slow, continuous feed over a number of hours. However, individuals on eating disorder units have to be monitored when on a pump feed as there is a risk that they could tamper with the feed/pump in order to avoid receiving the required nutrition.

The dietitian will prescribe different methods of feeding according to your child’s need and how they are tolerating NG feeding. Eating disorders units normally use push syringe bolus feeds. This is because they are quicker and less distressing for the young person.  Furthermore, if someone is needing to be restrained for NG feeding this is the ‘least restrictive’ practice.

Gravity and enteral pump feeds are more commonly used by paediatric staff in medical hospitals.

What is PEG feeding?

PEG stand for a ‘Percutaneous Endoscopic Gastrostomy’. This is a type of tube is placed through the skin into the stomach. This is a procedure that would be done in a medical hospital and is not commonly used for people with eating disorders in the UK.  

What is actually fed through the NG tube? How many calories?

Within the UK it is standard practice to only put a prescribed enteral or sip feed down an NG tube.  These are products that can vary from 1-3.2kcal/ml and they will also have different levels of protein, vitamins and minerals. The dietitian will prescribe the best product to meet the patient’s needs. 

In some countries, such as the US, blended diets (when food is blended into a liquid state) can be used however, this requires a wider tube than is normally used and so it has to be a PEG tube (see above).

Can one feed too much at a time?

The volume of feed prescribed will be reviewed by the dietitian and it is standard practice to monitor a person’s tolerance to NG feeding.  It is normal practice to start at smaller volumes and guild up as tolerated.  We do know that some patients can tolerate over 1,000ml per bolus feed.  Others may not be able to tolerate large volumes.  

My child has always been vegan. Is that incompatible with tube-feeding?

Unfortunately, there are no prescribable supplement drinks or enteral feeds that are vegan, that can be passed through the NG tube. There are however some vegan shakes that can be drunk but they are not licenced for NG feeding.  

There are soya-based supplements and feeds that have minimal amounts of animal products within their formulation, for example only the vitamin D is derived from an animal. However, there are no high calorie versions of these soya products and therefore they may not be suitable for everyone.  The dietitian will be able to explain the patient’s choices to them.

Are there evidence-based guidelines I can give the treatment centre?

Each treatment centre has their own policy regarding NG feeding for patients who consent to this intervention. There are guidelines for dietetic practice in nasogastric tube feeding under restraint for patients with anorexia nervosa (2020), by Sarah J Fuller, Ursula Philpot et al, endorsed by the British Dietetic Association (BDA) and the Irish Nutrition & Dietetic Institute (INDI). 

Parents or clinicians may also find it useful to read case studies of NG feeding under restraint following the above guidelines, in Nasogastric tube feeding in line with new dietetic guidelines for the treatment of anorexia nervosa in a specialist children and adolescent inpatient unit: a case series (2020) by Paola Falcoski, Ursula Philpot, Jacinta Tan, LD Hudson, Sarah J Fuller

And here’s another really practical article for any parent or professional worldwide. It also explains the legal aspects — sectioning under the Mental Health Act in England and Wales: Nasogastric tube feeding under physical restraint on paediatric wards: ethical, legal and practical considerations regarding this lifesaving intervention (2022) by Sarah J Fuller, Simon Chapman, Emma Cave, James Druce-Perkins, Poppy Daniels and Jacinta Tan.

Also essential education for staff: Nasogastric tube feeding under restraint: practical guidance for children’s nurses (2022) by Sarah J Fuller, Sharon Thomson and Jacinta Tan: ‘This article offers an overview of eating disorders and their detrimental effects as well as practical advice for children’s nurses, supporting them to provide safe, compassionate and person-centred care to their patients.’ The article reiterates the 2020 advice quoted above, and there’s also a really good section to help staff understand the typical distorted and anxious thinking of patients, and guidance on phrases to use or avoid when communicating.

For experiences and recommendations around shared decision-making — that where clinicians, parents, and the young person discuss the possibility of tube-feeding, and how it might be best done if it goes ahead — see Decision-making and best practice when nasogastric tube feeding under restraint: multi-informant qualitative study (2023) by Sarah J Fuller, Jacinta Tan and Dasha Nicholls.

A series of interviews revealed that for nasogastric tube feeding under restraint, good care required a positive relationship between patient and clinicians, with good communication with trusted members of staff: "these relationships appeared to be key to participants
taking steps forward in their recovery, helping to foster trust and hope for recovery." And making the care planning individual to the person rather than using some standard process. One interviewee, a staff member, said, " We use an individualised approach and that can be hard to hold boundaries on the ward when one kid gets one thing, and another doesn’t but when you explain it they understand. So many kids get transferred to us, stuck, because they have been backed into a corner [from an inflexible treatment pro gramme] and never had any adjustments to meet their needs." From: The importance of individualised care, good communication and trust for reducing nasogastric tube feeding under physical restraint: qualitative multi-informant study (2024) by Sarah J Fuller, Jacinta Tan and Dasha Nicholls.

Do the dietetic guidelines for NG tube feeding only apply to British and Irish clinicians?

Each county will have their own policy and guidelines.  However, within medicine it is expected that clinicians follow ‘evidence-based practice’. This includes being aware of guidelines from other countries. According to our literature review, the British Dietetic Association’s guidelines are the most up to date and comprehensive when it comes to feeding under restraint.

The treatment unit will not listen to me even though I gave them the guidelines. What can I do?

Treatment is easier for everyone when you trust the team that is taking care of your child. If you are not in agreement with the treatment given, you can request to discuss aspects of treatment with members of the multidisciplinary team (MDT) as well as during the patient’s care program approach (CPA) meetings.

Note from Eva

I found the 2020 ‘case series’ paper and the 2022 paper mentioned above really informative, and even I can understand it. I also saw Sarah Fuller give a webinar about the guidelines and all the work that went behind it, investigating what is and is not happening in hospitals. If your child is going to get NG feeding under restraint, I recommend you ask if the hospital is aware of these guidelines.

If Paola Falcoski’s name is familiar to you it may be because I mention her here in relation to ARFID.

In relation to the last question, I wrote some more tips for parents here on raising your concerns.

I want to share a couple more things that parents say really helped with tube-feeding. One is the use of a Virtual Reality experience the young person could choose during the intervention. See MamaA’s comment below.

The other is the use of ‘Rescue Remedy’ (from a health food shop): a mother told me how extreme her daughter’s distress and resistance was to tube-feeding. The medical team then introduced 4 drops of Rescue Remedy 15 minutes before feeds, along with playing games, and there was no more struggle.