Patient-centred information and support

If you are at risk of delirium, you and your family or carer will be given information and advice about delirium and how it can be prevented. You should be given this information in a way that you can understand it, whether it is written information or someone talking to you. Being prepared and acting early can help to reduce the effects of delirium. You and your family or carer will be encouraged to alert your healthcare team of any changes in your behaviour, thinking or physical condition. The health service organisation will have systems in place to take action if your health worsens. It is important that you and your family or carer know what to expect, what you can do if this happens and how to ask for help.

Your family or carer can provide valuable information to the clinicians caring for you and should be involved in your care if you wish them to be. An interpreter can be used for these conversations if required. If you develop delirium, the plan for your care will be discussed with you and your family or carer, and informed consent will be sought for any treatment you receive. The aim of your care will be to reduce your symptoms and any distress experienced with delirium.

People with delirium may:

• Appear confused and forgetful
• Be unable to pay attention
• Be different from their normal selves
• Be very agitated, quiet and withdrawn, sleepy, or a combination of these
• Have rapid and unpredictable mood changes
• Be unsure of the time of day or where they are
• Have changes to their sleeping habits, such as staying awake at night and being drowsy during the daytime
• Feel fearful, distressed, upset, irritable, angry or sad
• Have hallucinations and see frightening things that are not there but seem very real to them
• Lose control of their bladder or bowels
• Have delusions or become paranoid, and strongly believe things that are not true – for example, they may believe that someone is trying to physically harm them or has poisoned their food.

These symptoms fluctuate during the day, and may worsen in the evening or night.

Family members or carers can support you because they are familiar to you. They can:

• Reassure you
• Remind you about eating and drinking
• Bring in familiar objects
• Help the healthcare team to get to know you and understand what you are normally like.

Inform patients, families and carers about the causes and symptoms of delirium. Ensure that interventions for preventing delirium, such as modifying the environment, are in place and understood by the patient and their family or carer. Explain how they can help with prevention and management if they are able to do so.

Recognise when to engage an interpreting service to ensure the patient, families and carers understand the information you are sharing with them. Family or friends may not be appropriate interpreters because of health privacy issues.

If a patient develops delirium, proactively assess their distress and inform them and their family or carer about the plans to treat and reduce the severity of symptoms and any distress experienced with delirium. Support patients to make their own decisions and to choose a support person to be involved in decisions. Ask patients specifically about fears or concerns, and about hallucinations. Reassure patients and help them feel safe.⁴⁷ It can be reassuring to patients and their family or carer to know the clinicians are informed about delirium and will take steps to help them avoid it, or to recognise and treat it early if it occurs.

Recognise that delirium is often a frightening, distressing and isolating experience that requires a gentle and friendly approach for the patient and family or carer.

Ensure that systems are in place to support clinicians in providing person-centred care for those with, or at risk of, delirium. Consider flexible visiting arrangements to support family or carer involvement in delirium prevention and management.

Identify appropriate interpreting services and educate the workforce on how to use interpreters appropriately.

Ensure that systems are in place to recognise when a patient has cognitive impairment and to work with the person, families and carers in a safe, calm and respectful environment. The Commission has developed resources to support health service organisations to provide safe care for people with cognitive impairment during COVID-19, which can be found at Cognitive impairment and COVID-19.

Ensure that processes are in place for patients, carers or families to directly escalate care. Examples of good practice include the following:

• Ryan’s Rule is a three-step process in place in Queensland public hospitals to support patients, their families and carers, to raise concerns if a patient’s health condition is getting worse or not improving as well as expected.
• Call and Respond Early (CARE) (WA and ACT) is another example of allowing patients or their families and carers to call for rapid assistance when they feel that the healthcare team has not fully recognised the patient’s changing health condition.
• REACH (Recognise, Engage, Act, Call, Help is on its way) (NSW) is a patient and family escalation system developed by the NSW Clinical Excellence Commission for New South Wales hospitals.

Examples of patient information about delirium can be found at:

• Agency for Clinical Innovation: delirium brochures, available in 15 languages
• Scottish Intercollegiate Guidelines Network (SIGN): Delirium: A booklet for people who have experienced delirium, and for their carers.