Patients & Families

Coping with a long ICU stay

A particularly hard time for families’ can be when a patient’s sedative drugs are being reduced as during this time the patient may be agitated, upset and occasionally aggressive. This is due to a combination of things including residual effects of the drugs, the illness itself, and sometimes alcohol and smoking withdrawal. This time will pass and the staff will keep the patient safe. 

Fortunately many patients get better quickly and are soon ready to leave the ICU, for others the process is more prolonged and they may require help, particularly from the ventilator or breathing machine for some time. This slow recovery process is often called ‘weaning’ and can be very frustrating for both the patient and the family.

During the first stages of the illness the ventilator does most of the work but as the patient gets better they do more of the work themselves. This is called weaning the ventilation and is done by reducing the support the machine gives the patient and seeing how the patient copes. The breathing tube (ET or endotracheal tube) is not easily tolerated and makes many patients cough and gag unless they are sedated, but the sedation holds up their progress.

If patients have a long stay on the ICU it is very likely they will be weak and take a long time to have enough respiratory muscle strength to wean off the ventilator. At this point the team may consider performing a temporary tracheostomy, done either in the unit (a percutaneous tracheostomy) or by ENT surgeons in theatre (a formal tracheostomy). By bypassing the throat the patient is more comfortable (although it does look a little strange at first), they need less sedation so can be more awake and often wean far more quickly. In time many patients can start to eat and talk with the tracheostomy still in place.

Sometimes it feels like it is one step forward and two steps back, as critically ill people are prone to further complications. It is important to try to stay positive, and look after yourself in this time. The presence of family & friends, their reassurance and encouragement, and personal possessions, music and news from home all help with forward progress.

Some units make ‘patient diaries’ for their long stay patients, with photos, comments from staff & visitors, news, cards etc. Patients often feel they have ‘lost’ the days they were unwell and the diaries are useful for filling in the gaps.