Eating and Drinking with Acknowledged Risks

Eating and Drinking with Acknowledged Risk

Eating and Drinking with Acknowledged Risks
Information for Patients, Relatives and Carers

Swallowing Problems (Dysphagia)

A safe swallow does two things:

1. It needs to get all food/drink and saliva into your stomach.
2. It stops food/drink going down the tube to your lungs (windpipe or trachea).

Lots of illnesses and conditions can cause swallowing problems. These may be short term or lifelong problems.

If you have swallowing problems, food and drink might go towards your lungs. This is called aspiration. You may be more likely to choke. You may not be able to eat and drink enough to stay well (malnutrition and dehydration).

Common signs of aspiration when eating and drinking are:

• Coughing
• Choking
• A wet or gurgly voice
• Getting out of breath

Sometimes these signs do not happen, but food and drink are still entering the lungs. This is called silent aspiration.

Aspiration can cause a serious chest infection known as aspiration pneumonia. Sometimes people with aspiration pneumonia need to go to hospital for treatment. In the worst cases, this can cause death.

Speech and Language Therapists (SLTs) work with people with swallowing difficulties.  This can include changing the texture of food and drink. They might also suggest ways to change how you eat and drink. Sometimes these changes do not help, so there will still be a risk of aspiration.

Tube Feeding (Clinically Assisted Nutrition and Hydration)

Some people with an unsafe swallow are fed by a tube. This makes aspiration and choking less likely but not impossible.

There are different feeding tubes.  In short term swallowing problems, a tube is put down the nose and throat into the stomach (nasogastric tube/NGT). For longer term swallowing problems, surgery is needed to put a tube into the stomach (e.g. percutaneous endoscopic gastrostomy/PEG).

Normal food and drink do not go through these tubes. A Dietitian will work out what kind of special liquid food and how much is best for each person. This makes it less likely that a person will become malnourished or dehydrated. Medicine can be given through a feeding tube too.

Tube feeding is not suitable for everyone.

• You may not want a feeding tube.
• Sometimes it will not improve your quality of life.
• You may not be well enough to have surgery for a longer-term feeding tube.

Your NHS team (e.g. doctor, nurse, SLT) will discuss the reasons for and against tube feeding with you.  People with a feeding tube can sometimes have small amounts of food and drink.  Your SLT will discuss this with you.

Eating and Drinking with Acknowledged Risk (EDAR) – Previously known as feed at risk

If you cannot swallow safely you may choose to keep eating and drinking. This means you are at risk of aspiration, choking, malnutrition and/or dehydration. We call this eating and drinking with acknowledged risk (EDAR).

EDAR is chosen for many reasons such as:

• You are very ill or not expected to live much longer
• Your swallow is not likely to improve
• Eating and drinking is important for enjoyment and quality of life, including when you have a feeding tube
• It is unsafe to have surgery to put a feeding tube in
• You do not want a feeding tube

If you choose EDAR, your doctor will talk about advanced care planning with you, and if you wish, the people closest to you. The advanced care plan can include:

• how to manage chest infections/aspiration pneumonia.
• whether you are treated in hospital, at home, or not at all.

SLTs may advise on food and drink which can be more comfortable to swallow, still with a risk of aspiration.  You may not want to make changes so you would have the food and drink you prefer with acknowledged risk. 

Dietitians may advise on types of food and drink which can help your nutrition. However, this is not suitable for everyone.

Eating and drinking is a personal choice. If you change your mind about EDAR or your advanced care plan, this can be talked about again. Here are some reasons for EDAR to be reviewed:

• Swallowing improves.
• You want to change your mind about a feeding tube.
• You are eating and drinking enough.

Mental capacity

Mental capacity means being able to understand information, make a choice, and tell someone what you decide. Sometimes people cannot do this, so others make the decision for them. This is known as a best interests decision. When this happens your NHS team will talk to people who know you well and think about what you would have wanted. If you have already said what you want, they will listen to that. If someone is chosen to make health decisions for you (Lasting Power of Attorney), the NHS team need to know.

Tastes for Pleasure

Sometimes eating and drinking becomes too upsetting, for example, coughing and spluttering, or people no longer want to have food and drink. They may find comfort in tasting their favourite flavours. Please ask for the information leaflet about Tastes for Pleasure.

Provided by Worcestershire Acute Hospitals NHS Trust and Worcestershire Health and Care NHS Trust

If your symptoms or condition worsens, or if you are concerned about anything, please call your GP, 111, or 999.

Patient Experience

We know that being admitted to hospital can be a difficult and unsettling time for you and your loved ones. If you have any questions or concerns, please do speak with a member of staff on the ward or in the relevant department who will do their best to answer your questions and reassure you. 

Feedback

Feedback is really important and useful to us – it can tell us where we are working well and where improvements can be made. There are lots of ways you can share your experience with us including completing our Friends and Family Test – cards are available and can be posted on all wards, departments and clinics at our hospitals. We value your comments and feedback and thank you for taking the time to share this with us.

Patient Advice and Liaison Service (PALS)

If you have any concerns or questions about your care, we advise you to talk with the nurse in charge or the department manager in the first instance as they are best placed to answer any questions or resolve concerns quickly. If the relevant member of staff is unable to help resolve your concern, you can contact the PALS Team. We offer informal help, advice or support about any aspect of hospital services & experiences.

Our PALS team will liaise with the various departments in our hospitals on your behalf, if you feel unable to do so, to resolve your problems and where appropriate refer to outside help.

If you are still unhappy you can contact the Complaints Department, who can investigate your concerns. You can make a complaint orally, electronically or in writing and we can advise and guide you through the complaints procedure.

How to contact PALS:

Telephone Patient Services: 0300 123 1732 or via email at: [email protected]

Opening times:

The PALS telephone lines are open Monday to Friday from 8.30am to 4.00pm. Please be aware that you may need to leave a voicemail message, but we aim to return your call within one working day.

If you are unable to understand this leaflet, please communicate with a member of staff.

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