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Newsletter December 2022: ICU diary: Helping patients fill the 'memory lost' gap in ICU

Kean Seng Cheah

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A stay in ICU can be traumatic to the patients. Patients are confronted with possible death and constantly drift in and out of consciousness, with mysterious alarm ringing and seeing different sets of faces each time they are awake. The journey of recovery from critical illness does not end on the day of ICU discharge, but this experience and memory will cling to the patients as they move on. Patients find it difficult to make sense of the sequence of events due to ‘memory lost’ from sedation or critical illness. Often, lost memory, scattered memory and sensory inputs that is not possible for patients to comprehend from a spectrum of psychiatric
disorders after the ICU stay. “I have no memories for myself. I didn’t even realise I had been in a hospital. My family has been telling me. That time, for me, it did not exist.” Quoted by one ICU survivor¹.

Psychiatric disorders such as memory problems, post-traumatic stress disorder (PTSD), depression, nightmares and anxiety are common issues that plague ICU survivors. Because ICU survivors frequently experience several long-term debilitating psychological impairments that affect their quality of life, there is a trend towards increasing follow-up post-ICU admission, psychiatric review and psychosocial counselling in post-ICU clinics. One of the projects currently in practice to help patients better understand what happened during their ICU stay is writing a diary for them.

The ICU diary, just like an ordinary diary, was written by ICU staff, family and friends during sedation and ventilation. The log serves as a shared tool to write down ‘the day’ on behalf of the patients during critical periods. During the recovery phase, when the patient’s condition is better and well enough to read, they can read back and appreciate what was written in the diary. The content written by ICU staff or family is to fill in the gap of ‘memory lost’ by the patients, allowing patients to understand what had happened to them and to make sense of the chain of events during ICU admission. It also helps to rationalise the nightmares they are experiencing and allows them to cope with psychiatric disorders such as PTSD or depression. The content of an ICU diary is not necessary to be lengthy or in jargon. It should be written in simple language and easily understood by the patients. The content is patient-centred and not only limited to events in the ICU. It can include any event related to the patient, such as the match score of their favourite football team, updates on family members, grandchildren’s graduation, photography etc.

During ICU admission, the ICU nurse is responsible for patient selection and screening to initiate the ICU project; they also educate the family and keep a frequent update on the diary content. Although they are the main person in charge of the ICU diary project, the responsibility should be shared among any ICU staff taking care of the patients (doctor, dietician, speech therapist, physiotherapist etc.), and anyone is encouraged to contribute their part to the ICU diary.

There is convincing evidence highlighting the impact of ICU diaries on psychological well-being among survivors²¯⁹. However, the sample size was small in most studies, so there is a need to design a larger trial. ICU diary was associated with a lower risk of depression and better quality of life during recovery³. Most of the reports showed improvement in psychological assessment scores following the use of ICU diary⁴. Most patients gave positive feedback in the ICU diary, such as understanding what they survived during critical illness, a better understanding of recovery and gaining coherence on nightmares and delusional memories. Patients also reported on the component that played crucial roles in their diary, such as the presence of photographs or going through the diary with the staff⁵. Feedback from patients concluded that the ICU diary helped make sense of ICU stay and kept them occupied during a difficult time which resonates with the Facilitated Sense Making theory⁶. Pooled results from the meta-analysis showed that patients who received ICU diaries also reported lower risks of psychiatric disorders (PTSD, depression and anxiety) and better quality of life⁷.

Family members are encouraged to participate in contributing to the diary. It also helps create a bond among patients, ICU staff and family. It provides an essential source of information and a way for families to register their presence at the patient’s bedside and express their feelings. The role of the ICU diary has different benefits to the bereaved family of patients who did not survive ICU⁸. It supported family members during the bereavement process, and this diary helped them realise how critically ill their loved one was and be aware of the care their loved one had received from ICU staff; it provided comfort and support during difficult periods and coping with their loss.

Current research on ICU diaries extends beyond adults into pediatric patients. The ICU diary in the pediatric intensive care unit is perceived as a beneficial tool for communication and the formation of mutual understanding between family and health care workers⁹. It also serves as a space for written accounts for parents to express their emotions and provide insight into caregivers’ struggles and challenges.

The ICU diary project was met with challenges on its own such as bureaucracy challenges, ethical issues and additional tasks to the high workload among ICU staff. The family must know the indication for starting the ICU diary and the need for photography as part of ICU diary use. The ICU diary must be handled cautiously to avoid a patient’s privacy and confidentiality breach. No individual can take photographs of the content, sharing or reading aloud in public. The ICU diary must be handled with care and respect. It should be at the patient’s bedside and considered hospital property until the patient is discharged from the ICU.

The ICU diary network (http://www.icu-diary.org/diary/start.html)¹⁰ is a website that provides a platform for seeking information, literature, guidelines and references for anyone interested in starting the ICU diary project. It was founded by a group of dedicated nurses with enormous experience in this field and aimed to connect people from different regions who share the same interest. Looking at the map distribution of ICUs with the ICU diary project (http://www.icu-diary.org/diary/map.html ), the centre that successfully transformed this ideology into a complete run project confined mainly in Europe, Scandinavia and United States with fewer in South America, Australia and New Zealand. In Asia, only one from India (implemented diary) and Indonesia (ongoing diary project), respectively, have such schemes. For a more meaningful interpretation of research, we need participation from all regions with more diverse patient demography to study the impact/outcome.

The ICU diary might be one of many interventions that bring a difference to ICU survivors. However, it helps provide a cushion of support to ease the path of recovery for patients and families. Maybe we should ask ourselves, “Any of our current patients will benefit from an ICU diary?” Never too late to start.

Disclaimer: The author is not a member of the ICU network and has no conflict of interest in this publication.

References:

  1. https://proyectohuci.com/en/time-is-never-lost-icu-diaries/
  2. Blair KTA, Eccleston SD, Binder HM et al. J Patient Exp. 2017 Mar;4(1):4-9.
  3. Barreto BB, Luz M, Rios MNO et al. Crit Care. 2019 Dec 16;23(1):411.
  4. McIlroy PA, King RS, Garrouste-Orgeas M et al. Crit Care Med. 2019 Feb;47(2):273-279.
  5. Tavares T, Camões J, Carvalho DR et al. Rev Bras Ter Intensiva. 2019 May 23;31(2):164-170.
  6. Rice RN, Qualls BW, Carey MG. J Patient Exp. 2022 Jun 3;9.
  7. Sun X, Huang D, Zeng F, Ye Q et al. J Adv Nurs. 2021 Jul;77(7):2929-2941.
  8. Galazzi A, Adamini I, Bazzano G et al. Intensive Crit Care Nurs. 2022 Feb;68:103121.
  9. Gawronski O, Sansone V, Cancani F et al. Aust Crit Care. 2022 Mar 16:S1036-7314(22)00012-1.
  10. http://www.icu-diary.org/diary/start.html
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