Why keep an ICU diary?

For the patient

Patients receiving intensive care often spend time in a coma, either because sedation is needed to treat their illness or because of a neurological event such as a disease or injury. Although this period of unconsciousness is unavoidable in many situations, it means that when the patient wakes up, they may remember little or nothing of what they have been through.

 

They may also experience one or more periods of confusion around the time they wake up, with delirium and hallucinations. Many factors can contribute, including severe infection, certain medicines, a lack of deep sleep and disruption of the circadian rhythm—the normal day–night cycle.

This loss of memory, sometimes referred to in French as the “ICU gap”, may cover much of the patient’s time in intensive care and can be extremely unsettling. When they wake up, they are living with the consequences of a hospital stay they cannot remember, or remember only in fragments, dreams, nightmares or hallucinations. Keeping an ICU diary is a valuable way to help patients regain their bearings and reclaim their personal story.

 

An ICU diary can help them:

  • Fill in the missing period in their memory
  • Place strange or delusional memories in context, including delirium caused by medicines, sepsis or fluid and electrolyte imbalances
  • Understand why their body may feel so weak, fragile or painful when they wake up, and why recovery takes time
  • Separate reality from hallucination among their unusual memories
  • Reconstruct their personal story
  • Support psychological recovery and reduce guilt, anxiety, depressive symptoms and symptoms of post-traumatic stress
  • Better understand what their loved ones experienced during the hospital stay, including behaviour that may now seem overprotective, and reduce possible tension

 

For family and friends

Having someone close to you in intensive care can cause stress, anxiety and sometimes depression. Writing an ICU diary can help you put your feelings into words and relieve some of that stress. If the diary is shared with the healthcare team, you can also read and reread their entries, helping you understand the situation and absorb information at your own pace.

Family and friends often feel powerless to help someone in intensive care. An ICU diary is a simple and highly valuable way to make a real contribution to your loved one’s recovery. It also leaves a tangible sign of your presence beside the patient—words on paper to keep them company when you cannot be there.

 
Leaving her does not feel the same… If she wakes up, the diary and our words will still be there beside her, all the time.
Husband of an ICU patient

Céline’s story

The ICU diary from a family member’s perspective

 

For healthcare professionals

Writing an ICU diary for your loved one can also help healthcare professionals understand you better when some messages are visible to everyone. It can give them a clearer sense of what family members are worried about and help them respond appropriately. It may also reveal misunderstandings so that explanations can be adjusted. An ICU diary is also a valuable way for healthcare professionals to personalise care and is often a deeply rewarding aspect of their work.