We should always inform families of a patient's diagnosis of delirium

“The doctors were there for me to ask any questions & explain to me what was happening. The doctor took the time to explain, & asked me how I was feeling.”

— Family member

“Patients are sometimes distressed during delirium. Families are always distressed.”

— Staff nurse

We all know that healthcare systems could do better in detecting delirium - this remains a major priority. But we know from studies that even in patients with a diagnosis that families are often left in the dark. Many families do not know what delirium is and how to recognise it. So when sitting with their family member with delirium they may think that the person has developed dementia, schizophrenia, or another mental illness. Or they may have no label for what they are seeing and just look on in dismay and even horror.

Why do we not routinely inform families about delirium when it occurs?

No diagnosis in the first place
Lack of staff knowledge about delirium, so giving an explanation is challenging
Not understood as a priority
Lack of time
Unclear who should do it

In fact the lack of diagnosis is a compelling stimulus to improve delirium detection - along with many other good reasons. People with cognitive impairment without a diagnosis usually have delirium or dementia or both. Do you have patients under your care with obvious cognitive impairment but without a diagnosis? If so, put yourself in the shoes of the family members. What are they thinking and feeling? Perhaps if there is a suspicion of delirium then a proper evaluation and a diagnosis should be initiated. This is the first step.

If the patient does have a diagnosis, then a staff member, a nurse, a doctor, an occupational therapist or other professional should proactively let the family know about it. The word ‘delirium’ should be used. It is a useful word, more than ‘acute confusion’ or other less precise phrases like ‘not themselves after the operation’, or ‘probably a bit sleepy because of the painkillers’. Using the word delirium gives families a formal diagnosis that they can remember and use to make sense of the situation.

This recently produced booklet for patients and families has received a lot of good feedback. It is free to download and use. The website provides information on use on other websites (copyright form, etc.).

With respect to prioritisation, given the impact the condition has on the family it is clear that we must communicate this diagnosis formally, on every occasion. This not only will help families but will also facilitate the involvement of family members in the care of a person with delirium.

I regard communication with family as being a core part of delirium care. It should be part of the management plan. A sample plan might read as follows: