Your loved one is in the ICU: what should the family know?

If you are in a hospital corridor or beside the phone right now because someone you love is in the ICU, know first of all that bewilderment, exhaustion and not understanding are normal reactions. The ATS calls the family’s journey through the ICU an “emotional roller coaster”. This article is not meant to replace the care team’s explanations. It only aims to make the words clearer so you can ask better questions. We do not speak about any particular hospital or unit, and you should ask that unit itself about its visiting rules and hours.

What do those machines do?

The monitor. The ATS writes that a patient in the ICU who is on a breathing machine is connected to a monitor that measures heart rate, breathing rate, blood pressure and blood oxygen. Sometimes a chest X-ray and blood tests for oxygen and carbon dioxide levels are also done. The doctor, nurse and respiratory therapist use this data to adjust treatment. A monitor alarm does not always mean something bad.

The ventilator (breathing machine). The ATS describes it as a form of life support: a machine that takes over the work of breathing when the patient is not breathing enough on their own. Common reasons: low oxygen or severe breathlessness because of an infection such as pneumonia. For this, a tube (endotracheal tube) goes through the mouth or nose into the windpipe and is connected to the machine. The machine delivers a mixture of air and oxygen and, with continuous low pressure, keeps the air sacs from collapsing. The tube also makes it possible to suction secretions.

The ATS makes two important points. First, the ventilator does not fix the underlying problem; it supports the patient so that other treatments can work or the body can get better on its own. Second, the team always tries to take the patient off the machine as soon as possible. This gradual process of coming off is called “weaning”. Its length varies from a few hours to a long time, and depends on the patient’s strength, the state of the lungs beforehand and the involvement of other organs such as the heart and kidneys.

Tracheostomy. If the machine is needed for a long time or there is a blockage in the windpipe, the ATS says the breathing tube may be placed through a small opening in the neck. It does not have to be permanent and may be removed. In this setup the patient can sometimes talk and eat.

Sedatives and painkillers. The ATS writes that the ventilator does not cause pain, but the tube can cause coughing, nausea and discomfort, and the patient cannot talk or eat by mouth. So sedatives and painkillers may be given for comfort, which cause drowsiness. In very severe lung injury, medicines that temporarily stop muscle movement are sometimes given as well. These are stopped as early as possible, and are always stopped before the machine is taken away.

Lying on the stomach. In its discussion of ARDS, meaning severe lung injury, the ATS lists placing the patient face-down on the stomach as one way to improve how the lungs work. If you see your loved one lying on their stomach, it may be part of the treatment.

Confusion and restlessness

The ATS says “delirium”, a form of confusion, sometimes occurs in the ICU. The causes can be the effect of medicines, disrupted sleep, pain, infection or lack of oxygen, and it usually resolves as the patient improves. If your loved one says strange things, it is not their real personality. The ATS writes that talking to the patient, bringing music and photos from home and keeping them company help the team’s work. Ask what is allowed on the unit.

How to talk with the team

• Write your questions down. The ATS says to note your questions and to talk with the team regularly. In the rush and fear, a lot gets forgotten.
• Ask why. The ATS recommends asking the team to explain why the machine is needed, and telling them your concerns.
• Ask about the plan. For example: What is today’s goal? What would show that things are getting better? What is worrying? When should this be reassessed? The ATS says talking about the situation and day-to-day progress is useful.
• One spokesperson. If the family is large, choose one person to receive updates and let that person inform the rest, so the team doesn’t repeat the same explanation many times and messages are not passed on carelessly. This suggestion is ours and is not in the source.
• If you didn’t understand something, ask again. Asking again is not a nuisance.
• Ask how to help. The ATS says to help with tasks related to the patient’s comfort.

Decisions

The ATS writes that the ventilator is a “life-sustaining treatment” and that sometimes a conversation about continuing or stopping it becomes necessary. The final decision belongs to the patient. If the patient cannot decide, the team speaks with their legal representative, who is usually a spouse, an adult child or the closest relative. If your loved one has talked with you earlier about their wishes, tell the team. These conversations are heavy. You have the right to ask for time, to ask questions and, in difficult cases, to get help from a social worker or someone the team introduces.

Risks and honesty

The ATS says the ventilator is lifesaving but carries risks, including lung infection, air collecting around the lung, lung injury from air pressure and medicine side effects. No source can tell you what will happen to your loved one; only the care team, who know the patient, can say that. If an answer is unclear, ask exactly that: “What don’t you know yet?”

Looking after yourself

The ATS says the family should focus on hope and ways to support recovery, and should look after themselves so they don’t become exhausted and burnt out. In its discussion of post-intensive care syndrome it also writes that this difficulty can continue after discharge from hospital, and that caregivers may develop depression, anxiety or post-traumatic stress. So:

• Eat, sleep and rest. Step away from the hospital every few hours.
• Share the work with others.
• If fear, grief or insomnia has become severe, talk to your own doctor.
• The ATS says to keep a notebook of what happens in the hospital. On the day your loved one is better, it helps them connect their memories to the treatment.

After the ICU

The ATS writes that more than half of those who survive the ICU have at least one problem of “post-intensive care syndrome”: weakness and breathlessness, anxiety and depression, and trouble with concentration and memory. These symptoms often last six months to a year, and some last longer. Sometimes the patient needs oxygen, physiotherapy or occupational therapy at home, and then has to go for follow-up and lung tests. If these happen, you are not alone, and there are treatments that help.

If you don’t know what to do, ask the team, and write the question down right now.