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Principles of the ICU diary

Writing in an ICU diary means:

  • Helping to reconstruct your loved one’s story by filling in periods of unconsciousness or altered awareness—such as confusion, amnesia or delirium—and giving the patient back a part of their life that they will not remember, so that they can make sense of it afterwards;
  • Making your presence, commitment and support tangible;
  • Providing an effective way to reduce, or even prevent, psychological after-effects linked to critical illness, amnesia and care that may have been uncomfortable or poorly understood;
  • Helping the patient understand what their body has been through, and understand and accept the time recovery may take;
  • Communicating with your loved one when you cannot be with them;
  • Sharing non-sensitive information with family and friends;
  • Expressing your affection and helping the patient understand what you, too, experienced while they were in intensive care.

An ICU diary is NOT:

  • A complaints book: you may sometimes need to express frustration, dissatisfaction or criticism, but the ICU diary must remain a resource for the patient and their recovery. Keep this in mind whenever you add a message.

You can raise any concerns directly with the medical, nursing or allied health staff caring for your loved one, or arrange to speak with the unit’s senior staff, such as the head of department or senior nurse. Every hospital also has a patient-relations service that you can contact.

 

  • A private journal: ideally, an ICU diary is shared: everyone can contribute to it and read what others have written. If you wish to share intimate thoughts, private emotions or comments that might hurt other contributors, write them on a separate sheet and place it in a sealed envelope. You can attach the envelope to the diary, dated in the usual way so that the chronology—important to the patient’s reconstruction of events—is preserved. The secure LifeMapp Diary application is designed for this purpose: it allows you to create different privacy circles and write messages that only the patient can read.

    Bear in mind that an intensely emotional diary may leave the patient feeling guilty—for example, for having put those close to them through such a difficult time—and make it harder for them to read. If you need somewhere to express everything you are feeling, consider keeping a separate personal journal in which you can write freely about your fears and emotions. 

     

     

  • A medical record: to protect medical confidentiality, entries should not include detailed diagnostic information. If the patient wishes, they can later ask the hospital director for their discharge summary or even a copy of their medical records, and arrange to speak with a doctor from the unit for any further explanation they need.