Information for friends, relatives and visitors

The early days

Your relative or friend has been admitted to the intensive care unit (ICU) because their body cannot work normally. If they do not get special help, they may have serious long-term effects to their health or they may die.

Seeing the patient there for the first time can be very distressing. They are likely to be connected to a number of machines and drips and will often look very different from how they normally look. They may also be unconscious, sedated (given drigs to help make them sleepy and comfortable) and may not be able to communicate.

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. However, the patient will need time to let their body rest and get over the shock of becoming so ill. Sometimes they will be given strong pain-killing drugs or sedatives to help the healing process begin.

If you have questions about what is being done, ask the staff in the ICU. They may be very busy, but it is important that you get the information you need, so ask again, if you need to. They will answer your questions as well and as sensitively as 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.

Occasionally patients in an ICU may have to be moved to an ICU in a different hospital. This could be because the patient needs specialist care that is not available locally, beds are needed for new patients who are more seriously ill or because there aren’t enough beds. This can be very upsetting for you, and you may have to travel further to visit your friend or relative, do speak to the Consultant or nurse in charge if you are concerned. However, patients are only moved to a different hospital when it is absolutely necessary.

What can I do to help?

Days may go by with no change in the patient’s condition. There may be nothing for you to do but sit by their bedside and wait. Nurses will often talk through what they are doing even if the patient is unconscious. This is because, even though they may be sedated, the patient may be able to hear what is going on around them and may be aware of being touched, but they are unlikely to remember things as clearly as they would when fully conscious.

Helping the patient

The nurses may ask you to bring in some of the patient’s personal belongings to help them recover, such as their favourite perfume or music. Talking to your relative or friend may also help. Keeping up a one-sided conversation can be difficult, but talking about shared experiences of holidays and good times can make you feel better too. You could also try reading a newspaper, magazine or book to them. A ‘Who am I’ board may be completed with your help to support staff to personalise care of your loved one.

Even if the patient is conscious, you may find it hard to communicate with them. If they can’t speak, they may be able to write, or spell out words by pointing to some letters, numbers and common words you have written on a piece of paper. If this is too difficult, try asking yes/no questions.

Helping the staff

Some relatives find it helpful to be more involved in caring for the patient when they’re recovering. You may be able to help by doing things such as brushing their teeth or massaging or moisturising their hands and feet. This will depend on how ill the patient is, and won’t always be possible but if you want to help in this way, ask the staff.

You can help the intensive care staff by choosing a family member or friend to be the main contact. Staff can tell the main contact how the patient is doing and they can pass on the information to other family members. This will save time for staff and relatives.

Patient diaries

Some ICU departments will start a patient diary as a record of what is happening during their stay, including what treatment they have received, the weather, and other events. Alternatively, relatives may also find it helpful to keep a diary of what is happening. It can help you to look back and see any improvements the patient has made. You can ask staff members to add short entries too.

A diary can 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.

Preventing infection

Patients who are critically ill may have difficulty fighting infections and, because of how ill they are to begin with, this can be very serious. The staff will do all they can to make sure the patient is protected. You can help too by washing your hands and using the anti-bacterial creams, gels or sprays you’ll see around the unit before you go near or touch the patient. You should also ask other visitors to do the same. Additional precautions such as gloves, apron and a mask may be required.

Other things you can expect

There may be times when staff ask you to leave the patient’s bedside. This may for several reasons, including maintaining dignity for the patient, making the patient more comfortable – for example turning them or adjusting their position, and undertaking medical procedures that need some space. It can be distressing to see procedures being undertaken on a loved one, even though they are helping them. So you should decide, with support from the staff in the department, what is best for you and your relative.

Treatment

If the patient is ventilated (on a breathing machine), 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 can cause the patient to cough or retch. The fluids given to the patient to keep them hydrated may make them look bloated and swollen. This is normal and will improve as the patient gets better.

Some of the machines that the patient is connected to have alarms that may sound to let staff know that something needs doing, for example if a drip needs to be changed.It can be worrying to hear these alarms, but there is usually nothing to be concerned about – the staff will monitor the patient very carefully at all times. This might be by their bedside, or from their central nursing station.

Behaviour

Sometimes, the patient may behave out of character. This may be because of their illness or medication. They may be agitated, confused, scared or paranoid. Paranoia is a form of anxiety or fear that can make you believe people are plotting against you or trying to hurt you. They may also have hallucinations (see things that aren’t really there) and nightmares that seem very real to them. Patients sometimes believe the staff are trying to hurt them. This can be extremely distressing for you and the patient but it will improve as they get better and begin to recover. This behaviour is commonly referred to as delirium. You can help by reassuring the patient when they are agitated, explaining to them where they are and that they are safe, and making sure they have their glasses and hearing aids if they usually use them.

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, this process can take hours, or it can take days. During this time, the patient may be drowsy and confused, particularly in the early stages, but it’s a necessary step and it means they’re getting better. The sedation may need to be increased and decreased during this process according to the patient’s condition, confusion, breathing and other factors. This is very common across ICU patients.

If you’re unhappy with the care being given to a patient

The staff normally do all they can to keep relatives informed about what treatment is given and why. Where possible, they will let the patient and relatives know what treatment options they have. If there is anything you don’t understand or want to know more about, ask the staff. If you’re unhappy with the care being given to the patient and you are not able to deal with this through the ICU staff, you can contact the hospital Patient Advice and Liaison Service (PALS) who will help you to find the answers you need.

Looking after yourself

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 a break and this will also give the patient time to rest. The patient will be very well cared for and the staff will contact you straight away if they need to or if there is any change in their condition.

Your family and friends will be concerned about you and the patient, and they will want to know how things are. You may appreciate their concern, but it can be tiring if the phone is ringing all the time when you're at home between visits to the hospital. Passing on the information by e-mail or text message to several people at once can be easier. Or, you could speak to one person regularly and they could pass the information on to others.

You may not feel like eating and you may have difficulty sleeping, but do take time to eat regularly and rest when you can. If you become tired and ill, you won't be able to care very well for the patient.

Many ICUs will give you an information sheet about contacting the unit by phone, hospital parking, meals for relatives and visitors and overnight accommodation if it's needed. If you're not given this information, ask a member of staff.

Visiting hours for ICUs are usually more flexible than for normal hospital wards, and staff will be able to give you details.

If the patient is your partner

If the patient is your partner, you may suddenly feel very isolated and alone. You might have less time to do things like cooking, food shopping and may need help with childcare. Do consider accepting offers of help from friends and family, who may want to support you. You may also need to contact your partner’s employer and advise them of current circumstances.

Often, in times of worry and stress, people turn to their partner for support. If you don't feel like you can tell other family members about your worries of what may happen in case you upset them, you could get help from one of the organisations listed in the Useful contacts section.

It is important to familiarise yourself with household finances during this time. Make sure that your bills are being paid and if you need to get access to your partner’s bank account, contact your bank and explain the situation. It may also be necessary to consider Power of Attorney. You may be able to get temporary control of the account while your partner is not able to deal with these things. If money becomes a problem, contact Citizens Advice for information on any financial help and benefits that are available to you. There may be a social worker at the hospital that can support you

When the patient comes out of the ICU

You may have a reaction to the stress that you have been under once the patient is out of danger. It is important for you to know that feeling stressed and exhausted is completely understandable, and that you may feel like this for some time. If you feel guilty, worried or depressed, you can get help and information from the organisations in our Useful contacts section. Or, see your GP (family doctor) if you need more support. They may be able to support you with medication, or arrange counselling, so that you can talk to someone about what has happened.

Helping children who have a relative in an ICU

You may need to consider whether a child should visit their parent or a close relative in an ICU. You should check 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. ICUsteps have an activity booklet to support children’s understanding of having a family member or friend in ICU.

What you can tell the child will depend on their age and why their parent or relative was taken into the ICU. You can help a child deal with the situation by:

• trying to keep to their routine as much as possible,
• telling the school, and any other relevant groups, that the child’s parent or relative is in intensive care,
• explaining the situation and being honest if you don’t know what is going to happen – if you are not sure, try to say something they can understand that will help the child feel secure and reassured, for example, ‘Daddy is very ill but the doctors are doing everything they can to help him’, and
• encouraging them to keep a diary. It could include a brief description of each day and any souvenirs that they would like to include (such as pictures and so on). This helps the child understand what is happening and makes it easier for them to talk to the parent about what happened in their life while the parent 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 patient’s 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.

Remember that children can ask very blunt questions, so if the patient doesn’t feel strong enough to cope with this, ask another family member or friend to talk to the child about their experiences and feelings.

If the patient does not survive

Despite the best efforts of the ICU staff, sometimes patients are too ill and do not survive. A person dies when their heart stops beating or they have no more activity in the brain. If the doctors believe the patient is brain stem dead, they have a set of tests they must follow to confirm this.

Sometimes the doctors will discuss stopping treatment if they feel the patient is not going to get better. This may mean stopping the ventilator and the patient will stop breathing. This could be a short or long process, but the emphasis will be on making sure they are kept comfortable.

If your family member or next of kin is approaching the end of their life, you may be approached to discuss organ and tissue donation.

If you know the patient’s wishes regarding organ and tissue donation this can help in making the right decision for your family. Most families who agree to donate one or more of the patient’s organs or tissues find it comforting that something good will come from their loss.

It may help you to talk to a bereavement counsellor at this difficult time. They can offer support and understanding for adults and children (see the organisations in Useful contacts section).