Why is recovery after intensive care so slow?

What is post-intensive care syndrome?

A conference of the Society of Critical Care Medicine agreed on the term post-intensive care syndrome (PICS) to describe new or worsening problems in physical, cognitive or mental health that arise after critical illness and persist beyond the hospital stay. The term can also apply to family members 1.

Physical problems include muscle weakness, fatigue, reduced exercise capacity and breathlessness. Cognitive problems include difficulty with memory, attention and planning. Mental health problems include anxiety, depression and post-traumatic stress.

Why do people become so weak?

Critical illness causes inflammation and a rapid breakdown of muscle protein. Sedation, bed rest, mechanical ventilation, some medicines and poor nutrition add to muscle loss. Nerves and muscles can also be damaged directly, a condition known as ICU-acquired weakness.

Losing weight and muscle strength during a stay in intensive care can take a long time to rebuild afterwards.

How long can problems last?

In a study that followed 109 survivors of acute respiratory distress syndrome (ARDS), a severe lung injury, for five years, the median six-minute walk distance at five years was 436 metres, 76 per cent of the predicted distance 2. The physical component score on the SF-36 quality of life questionnaire was 41, compared with a population norm of 50 2.

Although lung function was normal or near normal, neither younger nor older patients returned to normal predicted physical function at five years 2. Other physical and psychological problems persisted in patients and family caregivers 2.

What rehabilitation is recommended?

UK guidance on rehabilitation after critical illness recommends assessing people during their intensive care stay and before discharge for their risk of physical and non-physical problems, providing an individualised, structured rehabilitation programme, and offering a review two to three months after leaving intensive care 3.

Rehabilitation may include progressive strength and endurance training, walking practice, breathing exercises, help with daily activities, nutrition support, cognitive strategies and psychological support.

How can families help?

Families can encourage gradual activity, support nutrition and sleep, and help with memory aids such as diaries and reminders. ICU diaries written by staff and relatives can help survivors make sense of gaps in memory.

Family members are also at risk of anxiety, depression and stress, and should look after their own wellbeing and seek support.

What can I do to support my recovery?

Set small, realistic goals, build activity gradually, pace yourself and allow for rest. Keep a record of progress, as improvement can be slow and easy to overlook.

Talk to your doctor about low mood, nightmares, flashbacks or anxiety, as psychological treatments can help. Support groups for intensive care survivors can reduce isolation.

What happens at a follow-up review after intensive care?

Some hospitals offer follow-up clinics for people who have been critically ill. A review may look at physical recovery, breathing, swallowing, nutrition, sleep, memory and concentration, mood and any symptoms of post-traumatic stress. It is also a chance to talk through what happened in intensive care, which many people cannot remember clearly.

The review may lead to referrals for physiotherapy, occupational therapy, psychological support or specialist medical care. Bringing a family member and a written list of questions and concerns can help make the most of the appointment.

When should symptoms be reviewed urgently?

Seek urgent help for chest pain, severe breathlessness, new confusion, fainting, calf swelling or signs of infection such as fever.

Contact your doctor if recovery stalls, if you lose weight unintentionally, or if memory problems or low mood interfere with daily life.

Frequently asked questions