Speech and Language Therapy - Eating and drinking with the acceptance of risk

The following information is provided to help you make a decision about whether eating and drinking with acceptance of risk (sometimes called ‘risk feeding’) is appropriate for you or your loved one. Give yourself plenty of time to think about the risks and benefits and to make sure you understand any information provided. Also take the time to have any additional questions answered before you make a decision.

Speech and Language Therapy Department

Community - 0161 206 2333

Community Stroke and Neuro Rehab - 0161 206 2352

Hospital - 0161 206 5450

Hospital Stroke Department - 0161 206 2142 Email: speech.therapy@nca.nhs.uk

What is safe swallowing?

Safe swallowing is when food, fluid and saliva are transported from the mouth through the throat to the stomach in a timely and coordinated way. During safe swallowing the chances of choking should be very small.

What is unsafe swallowing?

The normal eating and swallowing process may become unsafe for a variety of reasons. There may be problems with the muscles of the mouth, throat or oesophagus (food pipe), or the messages that are sent from the brain to these muscles. Swallowing problems (dysphagia) may result from stroke, dementia, neurological disorders (e.g. Parkinson’s disease, multiple sclerosis, motor neurone disease), surgery or radiation (for mouth, throat, or oesophageal cancer), deconditioning (when muscles don’t work as well due to prolonged illness), other medical conditions and even the aging process.

Signs and symptoms of swallowing problems (dysphagia) include:

• Coughing or choking when eating or drinking
• Gurgly or wet voice after swallowing
• Difficulty initiating a swallow
• Feeling that food is stuck in the throat
• Weight loss because eating is difficult or unpleasant
• Recurrent chest infections

When someone has a swallowing problem, there may be a high risk of food, fluid and saliva entering the wind pipe or lungs. This is known as aspiration. When aspiration occurs, we often cough to try and push the food, fluid or saliva back out of the airway.
At times food, fluids and saliva can go down the wrong way with no cough reflex or other outward signs. This is known as silent aspiration. Aspiration can be dangerous because it can cause a chest infection and sometimes pneumonia (an infection in the lungs).

How is unsafe swallowing managed?

• A Speech and Language Therapist will carry out an assessment to check if a person has swallowing difficulties. They may then request further medical tests to look at a person’s swallowing in more detail.
• The Speech and Language Therapist may recommend changing the texture of food and thickness of fluids to make swallowing safer.

There are sometimes changes to positioning and swallowing techniques that can be given to reduce the risk of aspiration during eating and drinking.

Exercises can sometimes be suitable for some people to improve the strength and coordination of muscles involved in chewing and swallowing.

• At times, unsafe swallowing may need to be managed by being ‘nil by mouth’ and having nutrition and hydration provided in an alternative way, such as, tube feeding.

This would be considered and reviewed on an individual basis by the professionals looking after your care, for example your doctor or Dietitian and Speech and Language Therapist. It may be short-term while a person is recovering from a period of being unwell.

In some cases, it is not always possible to insert a feeding tube due to a person’s medical condition or how unwell they are.

Can a person choose to continue eating and drinking with an unsafe swallow?

Any adult who has the capacity to make their own decisions can choose to continue eating and drinking, accepting the risk of swallowing related health complications.

Some people do not want to give up the comfort that comes from the taste and texture of food and fluids, even when eating and drinking results in coughing/choking episodes and aspiration.

This is known as 'risk feeding' or 'eating and drinking with acceptance of risk'. This option is often a quality of life decision. It allows continued enjoyment, comfort, pleasure and social interaction associated with eating and drinking.

A discussion will take place with a person and their family or carers to consider the benefits and risks of making this decision. The risks include, choking, chest infections, pneumonia, and possible death.

What if a person cannot make their own decisions?

If there are questions about a person’s capacity, they will need a capacity assessment and best interests meeting.

Making decisions around eating and drinking can be very difficult and emotional for families when a loved one no longer has the ability to eat and drink safely.

It is important that this decision is managed by a team of health professionals, including the medical team, Speech and Language Therapist and Dietitian, in consultation with the person and their family or carers.

A range of different factors will be weighed up, including, the severity of their swallowing difficulties, how much they are eating and drinking, their underlying medical condition and prognosis, their previous expressed wishes and any cultural or religious beliefs. The team will discuss the benefits and risks of various eating and drinking options in order for a decision to be made.

When might eating and drinking with acceptance of risk be considered?

This may be considered when:

• A person has an unsafe swallow, but tube feeding has been declined or is not felt to be appropriate
• A person has an unsafe swallow and has been advised to change the consistency of their diet and fluids, but they do not want to, or they wish to have less modified options of diet or fluids
• A person is tube fed, but still wants to have some food or fluids for comfort and quality of life
• Swallowing therapy has been unsuccessful in restoring a safe swallow
• The person is in the end stages of their life

Is it a permanent decision?

It is important to note a decision to eat and drink with acceptance of risk is not permanent. Sometimes people change their minds at a later date, if for example, they begin to develop chest infections from aspiration.

The decision will need to be reviewed if a person’s medical condition changes, making it more difficult for them to eat and drink.

Risk Feeding Protocol

A risk feeding protocol has been developed for use in both the hospital and community.

This is a document which is kept in the person’s Electronic Patient Records. This must be completed by the most relevant health professional so the decision is clearly documented.

This will lead to improved quality of life, as conversations and decisions that have been made, are clearly documented for other professionals to see. It can also lead to improved end of life care and reduced hospital admissions.

Advanced Care Planning

A decision to eat and drink with acceptance of risk may also trigger a conversation about Advanced Care Planning.

This is a discussion between you and those who provide care for you, for example your doctors, nurses, care home manager or family members.

During this discussion you may choose to express some views, preferences and wishes about your future care.

Your health or social care provider will be able to give you further information on this process.

What to expect from someone who is eating and drinking with acceptance of risk

A person may continue to show the signs of dysphagia and aspiration. They may cough and choke on their food or drink. They may continue to get chest infections. This may be difficult and distressing for those supporting them and it is important to work alongside their Speech and Language Therapist to find ways to help manage this risk.

If you, or the person you are supporting, has difficulty taking medication, please discuss this with a health professional as it may need to be reviewed.

Advice on assisting someone who is eating and drinking with acceptance of risk

If a person requires assistance or feeding, it is important to consider the following:

• Ensure the person is sitting as upright as possible
• Make sure they are awake and alert before feeding
• Sit facing the person so you can observe any signs of aspiration as well as being able to provide verbal prompts and encouragement
• Consider having a small number of people who feed this person so they can get to know them and how to feed them best
• If the person is coughing or showing signs of dysphagia and they are able to express themselves, ask them if they want to carry on
• Allow extra time for feeding and consider giving smaller amounts at once, with rest breaks in between
• If a person is showing any form of distress, discontinue feeding or give them a break
• The person MUST be supervised during all oral intake due to the high risk of choking

For further information on careful hand feeding and individual assessment or advice, please contact the:

Speech & Language Therapy Department - speech.therapy@nca.nhs.uk

Hospital - 0161 206 5450

Hospital Stroke Department - 0161 206 2142

Community - 0161 206 2333

Community Stroke & Neuro Rehab Community - 0161 206 2352