Maintaining quality of life with a feeding tube
How you can still maintain quality of life with a feeding tube
Living with a feeding tube inserted will undoubtedly alter a person’s routine and mindset, but they can provide a number of useful (and potentially life-saving) benefits while ensuring the person gets the nutrients, fluids and medication they need. Here, we are taking a look at what a feeding tube actually does, why you might need one, the different types you could be offered, the benefits and risks to know about, how it impacts quality of life in older adults, how to manage your own feeding tube at home, and how complex care from a professional caregiver could help people with feeding tubes to manage their health from home. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global domiciliary care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about complex care or feeding tubes, we can help.
What is a feeding tube?
A feeding tube may also be referred to as enteral nutrition, or a PEG tube, depending on the exact type a person has. It is a medical device that can deliver essential nutrients directly into the stomach or intestines of a person who cannot consume food orally, either on a temporary or permanent basis. This thin, flexible tube is inserted through the nose or mouth, and passes down through the throat into the digestive tract. It may also be surgically implanted if needed. According to studies, more than 790,000 feeding tubes are inserted in the NHS every year in order to help the relevant patients receive the nutrients, hydration and medications they need to sustain their health and support recovery from a number of health conditions. Tube feeding means creating direct access to your digestive system by bypassing the typical route food would take through your gastrointestinal tract (mouth to oesophagus to stomach to small intestine). Through this tube, nutritionally complete liquids are passed, and these will be created to fit the person’s individual needs. It can be difficult for loved ones to decide whether or not a feeding tube is a good idea for older people, so fully understanding what they do, how they impact quality of life, and the risk-to-benefit ratio is important.
Why might someone need a feeding tube?
There are a number of reasons a person of any age may require a feeding tube, such as:
- Recovery from a short-term illness or injury that impacts swallowing
- Chronic stomach or digestive disorders
- Feeding or eating disorders
- End-of-life care when a person can no longer eat by themselves
- Bowel obstructions or intestinal issues
- Crohn’s disease (due to an inability to absorb adequate nutrients)
- Situations where a patient is unconscious or in a coma
- Injuries to the mouth, neck or digestive system
- Cancer of the gastrointestinal system
- Those undergoing intense chemotherapy
- Those with severe late-stage dementia
- Those on a ventilator
- Esophageal diseases
- Paralysis
- Neurological conditions like a stroke or Parkinson’s
For older adults, one of the most common reasons for feeding tube insertion is dysphagia, which is described as an “inability to swallow without aspiration of oral intake”. In addition, moderate to severe malnutrition that cannot be rectified by oral intake is cited as a common reason for the insertion of a feeding tube to help support digestive health and metabolism.
What are the different types of feeding tubes?
While most feeding tubes have a similar function, there are a few different types that will be inserted in a number of ways, depending on the condition a person has and their individual health needs. The combinations of feeding tubes that may be inserted include:
- Starting in the nose and ending in the stomach – known as a Nasogastric (NG) tube
- Starting in the nose and ending in the first part of the small intestine – known as a Nasoduodenal (ND) tube
- Starting in the nose and ending in the second part of the small intestine – known as a Nasojejunal (NJ) tube
- Starting from the abdominal wall and ending in the stomach – known as a Gastric or Gastrostomy tube (G-tube)
- Starting from the abdominal wall and ending in the second part of the small intestine – known as a Jejunostomy tube (J-tube)
- Starting from the abdominal wall and ending in the stomach via the jejunum (the middle part of the small intestine) – known as a Gastrostomy-jejunostomy tube (GJ-tube), which usually has a function to drain stomach fluids and provide medicines, and a separate function to feed
While many feeding tubes can be either temporary or permanent, often the ones inserted via the nose or mouth are temporary, while the ones inserted via surgery through an opening in the abdominal wall are intended to be permanent. The PEG tube stands for Percutaneous Endoscopic Gastrostomy or Percutaneous Endoscopic Jejunostomy depending on where the tube ends, and these are often inserted as a permanent solution.
What are the benefits of a feeding tube for older people?
Feeding tubes offer several benefits for older people who may be facing difficulties with eating or swallowing. These include ensuring consistent and adequate nutrition is given, preventing malnutrition as a result, reducing risk of aspiration pneumonia (a common complication of swallowing difficulties), and alleviating caregiver burden when hand feeding is involved. For individuals with serious health conditions who would not be able to gain enough nutrition on their own, feeding tubes can be nothing short of life-saving. There is also the option to decompress the stomach by removing trapped air, remove stomach contents if necessary, and administer medications if a person cannot take these orally – this should be discussed with the person first as consent to administer in this manner is important.
What are the risks associated with feeding tubes for older people?
While feeding tubes offer nutritional support, they – along with all medical procedures – come with some risks, particularly for older people. Prolonged use can lead to complications such as infections, aspiration pneumonia, discomfort and agitation, and a reduced quality of life. In addition, becoming dependent on a feeding tube could reduce a person’s ability to take food and medicines orally as their swallowing muscles may weaken over time. There is also a risk of tube displacement or clogging, which would require prompt intervention to avoid complications. Studies have found that displacement of a feeding tube is very common (for an estimated 25% to 82% of patients), and this can increase the risk of adverse events for the person.Other post-surgery risks that should be considered include temporary soreness, digestive issues, sores in the feeding tube passageway, and leakage at the insertion site.
Are feeding tubes right for someone with severe dementia?
There is ongoing debate about the ethics of inserting a feeding tube for someone with severe dementia. People with this late-stage condition typically have a reduced appetite (read more about this in our guide to handling loss of appetite in older adults), develop issues with eating and drinking, and experience swallowing difficulties. As a result, food or saliva can start to enter their windpipe which can cause serious issues and infections such as aspiration pneumonia. Feeding tubes can help continue to provide adequate nutrition for those with dementia, however the decision is a very personal and nuanced one.
Studies have found that feeding tubes are not always effective at preventing malnutrition in those with severe dementia, nor have they been found to prevent aspiration pneumonia. There is a risk that a feeding tube can cause unnecessary discomfort for a person with severe dementia, and they may attempt to pull one out. There is also debate as to whether these offer any comfort for a person with dementia, and whether they will extend life.
The National Institute for Health and Care Excellence confirms a lack of evidence showing that feeding tubes help to extend the life of those with severe dementia, so the choice can be a difficult one to make for families who are worried their loved one is malnourished or dehydrated. You can read more about this in our guide to symptoms of dehydration in older people.
You may find some of our other guides helpful if you are caring for a person with severe dementia:
How will a feeding tube change a person’s quality of life?
A feeding tube can significantly impact an older person’s quality of life, both positively and negatively. It provides essential nutrition and hydration when oral intake is compromised, ensuring the person receives vital nutrients and maintains their overall health – this can reduce anxiety for both patients and caregivers. It can also enhance a person’s comfort by alleviating any pain or discomfort they felt when attempting to swallow as normal. However, it also inevitably comes with downsides.
Life with a feeding tube – particularly if it is permanent – can be more challenging when undertaking physical activities, and when socialising around feeding support activities. For the most part, older people can carry on with their usual routine while taking care of the feeding tube insertion site and performing any maintenance tasks they need to at home; this may be done by the person themselves if they feel confident enough doing so and have been educated in the best practices, or it can be done by a caregiver.
Simplified tube designs and user-friendly equipment enhance ease-of-use for older adults, and more recent advancements – like portable feeding pumps and remote monitoring systems – can make the process much easier. With the appropriate support, older individuals can successfully manage their feeding tubes at home and maintain their independence.
The length of time a person may need a feeding tube for will vary due to their specific medical needs, so if this is likely to be a long-term addition to their routine, they may wish to learn more about managing this at home themselves, and enlist the help of regular home care visits to assist if they have issues with mobility, dexterity or something else.
How can a complex needs carer help?
Professional caregivers who specialise in complex needs can help with the management of a feeding tube for older people. Some of the ways in which a carer can help at home include things like:
- Watching for and preventing tube clogs
- Cleaning the skin around the feeding tube to prevent infections (wash with soap and water at least once daily, dry the area with a clean cloth to discourage bacterial growth, and wipe away any crust that forms around the tube site)
- Alert the person’s GP or nurse in charge of care if they notice signs of infection (redness, pain, swelling or pus)
- Flushing the feeding tube regularly with warm water before and after feedings
- Managing visits from other caregivers who may need to administer medicine or other types of support
- Monitoring intake and output of food to ensure everything is as it should be
- Address any discomfort or concerns the person may have
- Organising appointments to get their feeding tube checked (feeding tubes should be checked every 3-6 months and the person should be asked about their general wellbeing, have their nutrition needs checked, and have routine tube changes)
If you would like to learn more about receiving complex care at home, you may find some of our other guides useful:
If you are looking to organise feeding tube management for yourself or a loved one, our Care Professionals are trained to the highest clinical standards and will work with your own doctors and health teams to ensure you are receiving the best possible care at home. Our flexible packages can be tailored to whatever you need to feel confident with your feeding tube, enabling you to maintain your independence, routine and lifestyle.
Our award-winning home care at Home Instead can offer the bespoke, person-centred care you need. If you need additional support with your feeding tube management or another type of care, feel free to reach out to the Home Instead team to discuss your needs and allow us to create a personalised package to support you.
Michelle Tennant, Clinical Governance Lead
I am a Registered Nurse of 20 years and have been in the care sector since I was 17 years old, I have had experience in every role that exists in a care company, including Registered Manager, care consultant, recruiter, scheduling, auditing, complaints, and networking! My role in the National office is Clinical Governance Lead, and most recently have been working with DHSC and Chief Nurse Deborah Sturdy to develop a clinical governance framework for the delegated healthcare activities in social care, I am continuing to take the lead on our Healthcare at Home service and drive this in the network. In addition to my nursing role, I’m 4 years into my PhD in Aging at Lancaster University, with a key focus on the retention of Care Professionals in the social care sector.