A family member is in intensive care

Above the bed is a screen of numbers and lines: heart rate, blood pressure, the oxygen level in the blood, and sometimes more. These numbers change all the time, and a change doesn’t necessarily mean something bad is happening.

You’ll hear many alarms. Most come from the patient moving, coughing, a sensor slipping off a finger, or a drip bag running out. The nurse usually sees the same alarm on a central screen and knows which ones need action now.

You may see lines in the arm, neck or wrist to give medicines and measure blood pressure accurately, a thin feeding tube in the nose, and a urinary catheter. Each has a job, and each comes out when it’s no longer needed.

Sedation

Many patients in intensive care are given medicines that keep them asleep or calm: to tolerate the breathing tube, to ease pain, or to protect the brain after a severe injury or repeated seizures. This is intended sleep, and the team controls how deep it is.

Modern intensive care aims for as little sedation as possible. That is why the team often lightens it, sometimes daily, to see how the patient responds.

The illness itself

Reduced consciousness can be the result of what has happened to the brain: bleeding, a stroke, inflammation, seizures, lack of oxygen, or a disturbance in salts or liver and kidney function.

Why waking can take time

After sedation is stopped, a patient may need hours or days to wake, especially after long courses or if the kidneys or liver are affected. A delay alone doesn’t mean permanent damage. Doctors often need days before they can speak confidently about the outlook, because early judgements can be wrong.

The breathing tube runs from the mouth into the windpipe and connects to a machine that pushes in air and oxygen. It is placed when the patient isn’t breathing enough, when their consciousness is too low to protect the lungs from saliva and vomit, or during an operation or procedure.

A patient with the tube in can’t speak, because it passes between the vocal cords. This is temporary.

As the patient improves, the team gradually reduces the machine’s support, then tests breathing alone, before taking the tube out. If the ventilator is needed for longer, the doctors may suggest a small opening in the neck for breathing (a tracheostomy), because it is more comfortable and safer in the long run, and it is often closed later.

You’ll sometimes see them suction secretions through the tube, making the patient cough or move. It looks uncomfortable, but it keeps the lungs clear.

• Daily blood tests: to follow salts, kidney and liver function and inflammation, and adjust medicines accordingly.
• Chest X-rays: to check where the tubes and lines sit, and follow the lungs.
• Repeat head scans: to follow bleeding, swelling or a stroke, and see whether it is changing.
• EEG: sometimes for hours or days, to look for seizures that don’t show on the body in a patient who isn’t awake.

You’re entitled to ask why any test is done, and whether its result changed the plan.

“Stable” is one of the most used, and most misread, words. It can mean the situation hasn’t got worse, without meaning it has improved. It’s fine to ask: stable compared with what?

• Choose one person to speak with the doctors and pass on what was said to the rest of the family. It reduces conflicting information and helps both the team and you.
• Ask when is the best time for updates. Many units have a set time after the morning round.
• You can ask for a family meeting with the senior doctor to understand the whole picture, especially when important decisions are coming.
• If you don’t understand, say so. Ask for it to be explained again in simpler words, or written down.
• Tell the team what the family knows: home medicines, past illnesses, and anything the patient said about what they would want if they became seriously ill.

Some patients may hear what is said around them even if they can’t respond. Speak to them calmly, tell them who you are, and avoid discussing their condition in front of them as though they weren’t there.

Many intensive care patients go through spells of confusion or delirium, especially older people. It helps them to know where they are and what day it is, to see familiar faces and hear familiar voices, to have their glasses and hearing aids, and to tell night from day.

Ask the nurse what is allowed: a family photo by the bed, a recitation or music they love played quietly, or helping with simple care. Wash your hands before and after, and follow the visiting rules; they are there to protect them.

• Share days and nights between family members; nobody should stay alone the whole time.
• Sleep at home when you can. The team will call if something important changes.
• Eat and drink, simply and regularly.
• Write down what you’re told in a notebook or your phone; memory weakens under stress.
• If worry or grief stops you sleeping or eating, or lasts for weeks after the patient leaves, talk to a doctor. This is common among families of intensive care patients, and help is available.