Patient diaries

[YDHicu]

Can anyone explain why two separate ICU nurses would each write an entry in my husband's ICU Patient Diary - one to say he was dying and one to tell him he was dead?

Why would anyone do something so unkind addressing him by name when he had been unconscious for a week and was on a ventilator?

Plus the diary's death entry recorded a complete lie about who was with him when he died.

And as if that wasn't enough hurt they eventually give me the diary. I am his grieving widow who knew and loved him for 51 years. I asked for the diary as it is supposed to reflect the care he received and include reference to family and friends.

Two long standing friends who rang the hospital to ask about my husband were refused any information and were not even asked their names so he would never have known they cared. And as family no-one asked our names or cared about us one bit.

How can any of this be right and especially in an intensive care ward?

[Sepsur]

I’m so sorry for your loss.

[Copse77]

I am so sorry you lost your husband and it has been traumatic for you reading the diaries from ICU. It sounds very distressing what you have described. You could ask for a meeting with the medical team who cared for your husband and ask them to explain about what you read and why this was written. It may be helpful for them to explain to you with a family member of friend present to support you.

[Rhyl1 Partner Moderator ICUsteps]

I’m so sorry you have had to go through this. An ICU diary is always addressed directly to the patient as it’s main purpose is to fill in what happened to them when they were unconscious. Where a patient, like your husband, clearly is at the end of their life then the role of the ICU diary changes to be a record of care that was provided to during their ICU stay for the family. It is possible that the last entry in the diary saying that your husband had died was not completed by the bedside nurse and the nurse with overall responsibility for ensuring all diaries are complete entered this to complete the diary. That was my responsibility before I retired. To ensure that the entry was accurate and factual I would check the nursing notes and, if possible, speak to the bedside nurse before writing it. At the hospital where I worked relatives were also allowed to write in the diary and so if the patient died they wrote the last entries saying their goodbyes to the patient. During Covid 19 this became impossible and many ICUs stopped writing diaries. You are right, while family friends are not able to receive information over the phone due to patient confidentiality, their names should have been taken and your husband told verbally and this added to the diary. As an ICU nurse I was told right from the start of working in ICU that patients can still hear and if they are only lightly sedated then might also remember some of what is said to them. Please feed back your worries to the ICU as it will help them to improve their care.

[YDHicu in reply to Rhyl1]

I have been through the complaint process and there was no explanation about the diary entries. The nurse who wrote the death entry was the one at the bedside when his ventilator was removed,. And there was no acknowledgement that the friends who rang should have been asked their names so that he might have known they cared. Their lack of care throughout meant he had no chance for a chaplaincy visit either.

[CLM68]

I am sorry you lost your husband, that must be devastating.

I never had an ICU diary, just the notes my family had written on pieces of paper which they then used to updated each other. None of my friends were allowed to visit me in ICU but they contacted my family for updates as ICU wouldn't take their names either. ICU only have the word of the person on the phone that they are a friend, and they certainly wouldn't give any patient details as that would be a breach of data privacy.

I would definitely set up a meeting to discuss the notes in the diary as they are, understandably, causing you even more distress at a time when you really don't need it.