ICF machinesKnowing that someone you love is very ill and in need of the special care provided by the hospital’s Intensive Care Unit (ICU) is naturally very worrying. You are likely to feel confused and upset, and anxious to help in any way you can.

The information provided here is designed to explain a little about the ICU, what to expect when you visit your loved-one, and answer some of the questions most often asked by friends and relatives.

What should I expect when visiting in ICU?

Visiting in ICU for the first time can be very confronting.

A major operation, accident or illness will have resulted in your loved-one being admitted to ICU. This is because their body has ceased to function properly and they need special help to avoid serious long-term effects or even death.

The patient may well be connected to a number of machines and drips and will often look very different from how they normally look. The fluids given to the patient to keep them hydrated may make them look bloated and bruising can be caused by tubes and injections. This is normal and will improve as the patient recovers.

Sometimes they will be given strong pain-killing drugs or sedatives to help the healing process begin.

When a patient is first admitted to an ICU, it is normal for you to feel helpless, and desperate to know everything you can about their chances of recovery.

If you have questions about what is being done, do ask the staff in the ICU.

They will answer your questions as best they can, but they will not want to give you false hope. The staff will be happy to explain what they are doing and they will be able to update you as time goes on.

What are all those machines and alarms?

Most patients in ICU will be connected to machines or drips of some sort. It is important for you to know that an alarm going off in ICU does not immediately translate to a problem or emergency. Many of the machines have alarms that sound to let staff know that something needs doing, for example if a drip needs to be changed. Usually, there is nothing to worry about – the staff will closely watch the patient at all times.

If the patient is on a breathing machine (ventilator), the nurses have to regularly clear the chest of mucus and fluid. They do this by putting a thinner tube into the breathing tube to suck up the mucus. This is quite noisy and may cause the patient to cough or retch.

There may be times when staff will ask you to leave the patientʼs bedside. This is because some of the necessary medical procedures are not pleasant and may upset you. It also gives the staff room to do their job.

What can I do to help the patient?

It is natural to feel helpless and anxious. Days may go by with no change in the patientʼs condition. There may be nothing for you to do but sit by their bedside and wait. But even that is a positive contribution. Research has shown that patients show positive effects including reduced blood pressure and heart rate when visited by a loved one. Simply by sitting by the patient’s bed and holding their hand, you will give the patient and yourself much comfort.

Just hearing your voice can be a help. Keeping up a one-sided conversation can be difficult, but talking about happy memories and good times can make you feel better too. You could also try reading a book or newspaper to them.

A word of caution, however. Too many visitors, visiting for extended periods and lots of stimulation are not beneficial for the patient during this critical phase of their illness. This is especially important for patients with brain injuries. Rest is as much a part of the patient’s treatment as any of the medical and nursing treatments. It is important that you ask about the most appropriate visiting strategy for your loved one. This strategy may change as the patient’s condition improves.

It is important for visitors to ICU to be conscious of hygiene to prevent vulnerable patients from contracting infection. Be sure to wash your hands and use the anti-bacterial creams or sprays in dispensers around the unit before going near a patient.

I’ve heard of ICU diaries. What are they?

Often, relatives find it helpful to keep a diary of what is happening. It can help you to look back and see small improvements the patient has made. A diary can also be very useful later on to help the person who is ill. They may have very confused memories of their time in the ICU or no memories of it at all. A diary can help them to understand what happened to them and fill in the gaps in their memory.

I’ve heard that patients have nightmares in ICU. Is that true?

Illness or medication can cause patients to become confused, severely agitated and fearful. Sometimes, they may believe people (including the staff or even family) are plotting against them or trying to hurt them. They may have hallucinations and nightmares that seem very real to them.

This behaviour in a loved-one can be extremely distressing for you to witness and for the patient to experience. But you must be reassured that this is not uncommon in ICU and will improve as the patient’s condition improves.

If the patient in the ICU has been given sedatives, the sedatives will be gradually reduced as the patient gets better. Depending on how ill they were, the drugs they needed and how long they were sedated for, the weaning process can take hours or it can take days. During this process, the patient will be drowsy and confused, particularly in the early stages, but itʼs a necessary step and an important part of recovery.

Should children be allowed to visit a loved-one in ICU?

You should discuss with staff before bringing children to the unit and talk to the child about it. If the child decides they want to go into the ICU, prepare them for what they might see, including the machines, what they do and how the patient might look.

What you can tell the child will depend on their age but you can help the situation by:

  • trying to keep to the child’s routine as much as possible;
  • informing the school of the circumstances;
  • explaining the situation and being honest if you donʼt know what is going to happen –try to say something they can understand that will help the child feel secure and reassured, for example, ʻ……… is very ill but the doctors are doing everything they can to helpʼ;
  • encouraging the child to keep a diary with pictures etc. This will make it easier for them to talk later about what happened in their life while the patient was in hospital.

Once the patient is out of the ICU, the child may need help dealing with what happened. This can be a gradual process and can take several months. At times, it may be helpful to mention the patientʼs stay in hospital so the child knows they can talk about it. Let them ask questions, and ask them how they felt at that time. If the child is very young, they may find it easier to show their feelings by drawing pictures or acting out what happened.

How do I go about raising any concerns I may have about patient care?

Communication is important between ICU staff and family. The staff normally do all they can to keep relatives informed about treatment options and recommendations. If there is anything you donʼt understand or want to know more about, ask the staff.

There are several steps that may resolve any concerns about patient care:

  • Speak to the nurse who is looking after your relative or to the primary care nurse looking after your relative. Ask them to follow-up with the ICU medical team.
  • Ask to speak to the medical team – this may take more than one meeting if you would like to consider the information provided, discuss it with your family and meet with them again
  • Ask to speak to the social worker who may advocate for families, or even just improve communication between families and the ICU team
  • If you are still dissatisfied – every hospital has a patient advocacy /complaints service. This service is intended to improve communication between families and the hospital and may be of value if every other opportunity to resolve the differences has been attempted.

What about how I’m feeling? (A question we know you’ll be reluctant to ask, so we’ll ask it for you!)

When someone you love is in ICU it is very natural to experience a myriad of emotions – fear, anxiety, guilt, exhaustion, confusion, helplessness. If the patient is your partner with whom you usually share troubles, you may feel alone and overwhelmed.

You can help the patient by taking care of yourself. You shouldn’t feel guilty for not being by their bedside 24 hours a day. You need to give yourself (and the patient) a break – to eat and rest, even if you don’t feel like it – and this will also give the patient time to rest. The experienced staff are there and will contact you straight away if they need to or if there is any change in the patient’s condition.

You should accept that your family and friends will be concerned about you as well as the patient. Let them help by accepting offers of practical assistance such as cooking, transportation, shopping or childcare.

If you are reluctant or unable to share your feelings and worries with them, it is important that you get help and give yourself the chance to talk about how you are feeling. Remember, confronting serious illness and the experience of ICU is an immense challenge for the patient and for you.  Even after the patient comes home, you may have a reaction to the stress that you have been under once the patient is out of danger.

If you feel guilty, worried or depressed, you can get help and information from:

Lifeline – 24 hour counselling: 13 1114
Beyond Blue: 1300 224 636
Veterans counselling service: 1800 011 046
Victims of crime 24 hours: 1800 000 055
Road trauma support: 1300 367 797
Brain Link: 1800 677 579

A visit to your GP may also be helpful at this time.