Weaning from mechanical ventilation: coming off a breathing machine after intensive care

A mechanical ventilator is a machine that delivers air and oxygen to the lungs when a person cannot breathe well enough on their own. The NHS describes it as a machine that helps with breathing, connected through a tube placed in the mouth, the nose or through a small cut in the throat. People who need this support are usually in an intensive care unit (ICU), where they are looked after closely by a specialist team, with typically one nurse for every one or two patients.

Weaning is the stage at which that support is reduced step by step and, if all goes well, withdrawn. ICUsteps defines being weaned as being taken off the breathing machine and says this is only done when the patient's condition is improving. It is therefore a sign that the illness that caused the breathing failure is moving in the right direction, although the person may still be very weak.

Weaning is not a single event for everyone. Some people have been ventilated only briefly, for example around an operation. Others have been critically ill for days or weeks, and for them the lungs and the breathing muscles may need time and practice. The ICU team decides the pace based on how the person is responding, and progress is not always in a straight line.

People on a ventilator are often given sedatives and painkillers, because the NHS notes that some of the equipment used can be uncomfortable. As the person improves, sedation is typically reduced so they become more awake, and the amount of support from the machine is lowered while the team watches how well they cope. Units differ in their exact approach, so the team looking after the person is the best guide to what will happen and when.

Physiotherapists play a large part. ICUsteps says that if you were ventilated the physiotherapist will give you exercises to strengthen your lungs and breathing muscles so you can breathe without the machine as you get better, and that this reduces the chances of a lung infection. They also exercise arms and legs when a person is asleep, to work muscles and stop joints becoming stiff, and later help with sitting up, standing and moving.

Waking up can be confusing. ICUsteps says people who have been sedated for long periods may have vivid dreams, nightmares or hallucinations, a state known as delirium that can affect up to 80% of patients in ICU, and that it can help to talk about it with someone you trust. Relatives are encouraged by the NHS to touch, comfort and talk to the person, who may be drowsy or confused.

When breathing support is needed for longer, a tracheostomy is sometimes created. The NHS explains this is a hole at the front of the neck into the windpipe, through which a tube is inserted to help you breathe, including delivering oxygen from a ventilator. ICUsteps adds that a tracheostomy makes breathing easier and reduces the body's need for sedation and for the ventilator.

Living with a tracheostomy while weaning changes everyday experience. The NHS says the tube often has an air-filled cuff and that you cannot speak while it is inflated, so communication may depend on writing and gestures at first. As you recover, air is gradually removed from the cuff so that speech can begin, and a speaking valve sometimes makes the voice stronger. A speech and language therapist may help with this and with swallowing, according to ICUsteps. Some people can eat and drink with a tracheostomy, while others need a thin feeding tube.

The tube is removed when you no longer need help breathing, which the NHS says might be a few days or weeks, although some people need it for longer. A dressing is put over the hole, which usually takes about 7 to 10 days to heal, and a small scar remains that fades over time.

There is no single reason that weaning is slow, and doctors consider several things together. The original illness may still be resolving, lungs may be scarred or inflamed, the breathing muscles may be weak from illness and from being at rest, or the person may be exhausted or delirious. ICUsteps notes that muscle loss happens faster in people who have been on a breathing machine, so strength is a recurring theme.

Reasons given by the NHS for needing intensive care include a serious accident, a serious short-term condition such as a heart attack or stroke, a serious infection such as sepsis or severe pneumonia, and major surgery. The route to weaning therefore depends on the cause, and the specialist team will explain the likely time frame for your own situation. Some people may deteriorate in the ICU, and the NHS is open that some stay for months.

• Ask the team what the current stage of weaning is and what is expected over the next few days.

• Ask who to speak to about communication aids if the person cannot speak.

• Tell staff about breathlessness, anxiety or distress, which can be addressed.

• Keep a note of questions for the ward round, as information is often delivered more than once.

Being off the machine is an important step but not the end of recovery. ICUsteps says you may feel very weak and tired at first and that physical recovery will be measured in months rather than weeks, with up to 18 months for some people to feel better or to adjust to a new normal. It also says that when moving to a general ward you may need to relearn simple things such as walking, eating, drinking or even breathing for yourself, which can be frightening but is normal.

The NHS lists lingering problems that can follow intensive care: weakness and stiffness, extreme tiredness, loss of appetite and weight loss, sleep problems, depression, anxiety or post-traumatic stress, and difficulty thinking clearly or being forgetful. These can last several months, and medical advice should be sought if they persist.

NICE guideline CG83 on rehabilitation after critical illness says patients at risk should have a clinical assessment during the critical care stay and an individualised, structured rehabilitation programme, with information about what has happened given more than once. It recommends a functional reassessment 2 to 3 months after discharge from critical care, coordinated with primary care. In practice this means asking your GP and the hospital team who is responsible for follow-up.

People who go home with a tracheostomy are taught how to look after it. The NHS says to call 999 if you have had a tracheostomy and are having difficulty breathing. It also says to call NHS 111 or get an urgent GP appointment for problems such as swallowing difficulties, coughing or being sick after eating or drinking, noisy breathing, a raised or uncomfortable scar, pain around the area or a hoarse or weak voice for more than a week.

More generally, new shortness of breath, a high temperature, chest pain or worsening confusion after leaving intensive care deserves prompt medical advice. Using NHS 111 or your GP is appropriate for concerns that are not emergencies.

Most weaning in the UK happens in NHS intensive care units, including after emergency admission. Private hospitals have critical care units too, mainly for patients recovering from planned surgery. In either setting weaning is led by the intensive care team with physiotherapists, nurses, dietitians and speech and language therapists, and follow-up rehabilitation usually continues through the NHS or insurer-agreed services. Ask the discharging unit who will see you after leaving and how to reach them.