Download PDF At the bedside

By Dr Ava Easton, Encephalitis Society and reviewed by Janet Hodgson, Clinical Neuropsychologist

Medical management

On admission to hospital and regularly throughout the patient’s stay, nursing staff will conduct careful and repeated observations. These include recordings of temperature, pulse, level of awareness, respiration rates, blood tests, input and output of any fluids

The patient may also need:

  • a catheter inserting in place of using the toilet
  • a tube into the nose (nasogastric tube) in order to provide essential nutrients and fluids if they are at risk of choking on food or drink
  • a percutaneous endoscopic gastrostomy (PEG) tube into their stomach ensuring that sufficient levels of nutrition and fluid are received if long-term artificial feeding is required
  • an intravenous line inserted into a vein enabling essential drugs to be administered as and when necessary
  • anti-embolism stockings or regular blood-thinning injections to reduce the risk of a deep vein thrombosis (DVT) (blood clots) which there is increased risk of developing if they are immobile in bed

The Glasgow Coma Scale (GCS) is used to assess levels of consciousness, via eye opening, verbal and motor responses. The scale is also used to classify brain injury as ‘mild’, ‘moderate’ or ‘severe’. Scores are monitored over time and a deterioration is reported to doctors by nursing staff

Sometimes a patient may be placed in an induced coma. An induced coma is a temporary coma brought on by a controlled dose of drugs to shut down the brain and allow time to recover from the swelling caused by encephalitis. The doctors decide the length of the coma depending on the extent of injury and the way the patient reacts.

The acute confusional state

During and after the acute phase of encephalitis the patient may be uncharacteristically uncooperative, aggressive and even violent. They may attempt to abscond. This is due to the impact of swelling in the brain on emotion and behaviour both during the illness and soon after, referred to as an acute confusional state. This state can persist in the early stages of recovery. During this time, the patient is not aware of their behaviour or able to control it. They are also oblivious to the impact their behaviour is having on those around them. This is in direct contrast to the myth often portrayed in the media, when the patient emerges from a coma calm and serene.

Observing a loved one in this state is distressing for family members and can make it difficult for those trying to care for them. When in this state, patients benefit from a ‘low stimulation’ environment. This means a quiet environment in which noise (e.g. from the television or telephone) and visits from others are minimised.

If you have concerns about risk associated with behaviours being exhibited by your loved one you should discuss these with nursing staff. They may be able to suggest strategies for minimising risk. For example, bedrails are sometimes used to prevent injury, especially when a patient is experiencing seizures. Alternatively, it may be appropriate for a specially adapted bed to be used that lowers to the floor so as to reduce the risk of falls.

Understanding encephalitis in the acute stage

Trying to communicate with the hospital doctors and nurses can sometimes seem difficult. Lack of information or too much specialised information can also be very daunting. You may not understand medical terminology.

So as to maximise the effectiveness of communication:

  • get to know the key staff involved in your loved one’s care
  • write down what you want to ask and take any opportunity to ask questions

Also, contact the Encephalitis Society. You can talk with an experienced professional by phone or email. They may have a Support Volunteer who can provide information and support. Support Volunteers are volunteers who have first-hand experience of encephalitis so are well placed to help.

Remember your own needs as a family member

In addition to the stress associated with a loved one being unwell, practical issues such as lack of sleep, no time to eat, no appetite and losing touch with family and friends can all add to the impact of the illness. At times family members may feel helpless, isolated and confused.

Acknowledge your emotions and be aware that other family members may react differently. Some hospitals provide Family Therapy, which may help you deal with the stress and emotions at this difficult time. Ask a member of staff if this is available in your hospital.

Involve your extended network of family and friends in providing you with practical support. Take them up on their offer of help. If they have not offered, ask them to prepare some food, do some washing, shopping or look after your children. The likelihood is that they want to help but don’t know what to do for the best.


FS024V1 At the bedside

Date created: July 2017; Review date: July 2020

Disclaimer: We try to ensure that the information is easy to understand, accurate and up-to-date as possible.

If you would like more information on the source material the author used to write this document please contact the Encephalitis Society. None of the authors of the above document has declared any conflict of interest which may arise from being named as an author of this document.