Critical Care Patient Diary

Objectives

This guideline seeks to provide personnel working with the deployed Intensive Care Unit (ICU) with guidance on the use and storage of patients diaries. 

Scope

This guideline introduces what constitutes a patient diary, it's benefits and the practicalities of its use and storage in line with information governance principles.

Audience

Intensive Care Nurses

Intensive Care Doctors 

Physiotherapists

Ward Nurses

CCAST/Aeromed/Transfer personnel

Introduction

  • Patient diaries for critically injured service personnel cared for within the ICU have been introduced as a way of helping patients to understand what has happened to them whilst they have been critically ill.
  • Positive results have been recorded from using detailed narratives in the form of Patient Diaries and studies have suggested that patient diaries are beneficial to those patients who have little or no recall of their stay in ICU. Encouraged by this published work, a similar approach has been adopted by the Defence Medical Services (DMS) for use within the operational theatres and at Role 3.
  • Rather than be prescriptive, this document seeks to provide guidance to personnel within the ICU as to how the diary should be used and stored.

Materials & Method

  • New diaries (FMed 1047) are to be stored in the stationery area of the ICU, with stocks being maintained by the NOiC or delegated personnel.
  • Stocks can be re-ordered through the normal stationary channels quoting the FMed 1047 number.
  • Any UK patient who is ventilated on the ICU may have a diary kept for them. Consideration should also be given to those patients who are not ventilated but who may be suffering from a degree of delirium or cognitive deficit, as these patients may also benefit in time from being able to read a diary of their stay.
  • The patients name, rank and date of admission should be completed on the front cover for identification purposes.
  • All entries must be dated and timed. The first entry should include a brief description of the reason for admission to ICU.
  • Avoid including information of a sensitive nature e.g location of incident, or information that a patient may wish to be kept confidential. A suggested approach is to write only what you would be comfortable to disclose verbally to a patient or relative at the bedside.
  • Entries need not be made on every shift. However, entries should be made where there have been significant milestones or events, such as extubation, or sitting out of bed for the first time, or improvements in wounds, pain control or oxygen requirements.
  • Include the patients’ colleagues. Encourage them to write that they have been visiting – they may wish to include news from the patients’ parent unit, or anything that the patient might have an interest in.
  • Avoid using jargon or abbreviations. A suggested approach would be to use ‘Laymen’s language’ when describing clinical terminology, which is commonly used when verbalising information to a patient or relative.
  • The diary is considered an official form of professional documentation and care should be given to ensure that the writing style reflects such professionalism and relevance.

Consent

Where feasible, it should be explained to the patient and their families about the availability of a communication tool, namely the diary, that they can use to document their loved one’s recovery and experiences throughout the ICU stay ( (Blair , et al., 2017).  In situations where the patient cannot provide consent during operations and when family members are absent, the dairy can be initiated as standard therapy (Backmann and Jones 2011).  Written consent must be gained once the patient is in a condition to receive and provide consent for its use.

Storage of Diaries, & Follow-up

  • Patient diaries are to be transferred with the patient to another ward within the hospital. In the case of Critical Care Air Support Team/discharge transfer the original diary is to remain with the patient and be handed over to military personnel at the Role 4 for ongoing completion and management.
  • Whilst on ICU, the diary should be kept at the patient’s bedside, or with their Medical notes.
  • The patient can receive the diary prior to home discharge, at a time that they feel comfortable.  In the event that the patient does not survive their admission, the diary can be returned to the next of kin.  If photographs are taken, according to UK law, they cannot be released to the family as the patients’ written consent has not been obtained.
  • Research suggests that follow up meetings post ICU discharge are beneficial to patients where they can have a two-way conversation, giving the patient the opportunity to ask questions, gain information and confirm memories, thoughts, and feelings.  It is encouraged that patients attend with the diary to aid in recovery and rehabilitation (Beg, et al., 2017).

Tips on Diary Authorship & Content

All healthcare professionals caring for the patient should be given the opportunity to contribute to the diary. All entries should be dated and signed. Were able, the patient, their family members and friends should be encouraged to write in the diary (Beg et al. 2017).

Commence the diary by providing a brief overview of what happened to bring the individual into the ICU, and why it was needed, followed by information about their ventilatory support and sedation requirements (Beg et al. 2017). 

Significant milestones in the patients ICU journey such as procedures or transfers, which may involve interventions like removal of drains, extubation, tracheostomy insertion, general surgery, and aeromedical transfers (Backman & Jones, 2011). 

Additionally, provide details of the ICU environment such as monitor and pumps noise, or sounds originated from chest drains (Phillips, 2011). 

Begin each entry with clearly written standardised headings, which are dated and signed by the author, using basic English with no medical jargon (Beg, et al., 2017).  This is to ensure that diaries are understood by everybody and that they are clearly distinguished from the patients’ medical records (Phillips, 2011).

Entries should be made every day so that there are no gaps in the narrative for continuity (Beg, et al., 2017).

The literature promotes the use of photographs, as they are believed to assist patients in recollecting and comprehending their experiences. Akerman et al., (2013) found that patients in their study considered the inclusion of photographs crucial, with 91% of participants expressing that these images aided their understanding if their critical illness.  However, taking photographs during medical procedures or in certain situations during deployment may not always be legally, ethically, or logistically feasible. Decisions regarding this matter may ultimately be at the discretion of the Officer Commanding (OC) in charge.

Evidence Base

There is strong evidence to suggest that sedated and mechanically ventilated patients in the intensive care unit (ICU) are at heightened risk of developing nightmares and causing incomprehensible stress (Righy, et al., 2019).  This heightened risk may potentially render them susceptible to Post Traumatic Stress Disorder (PTSD), anxiety, depression, and mental health multimorbidity (Righy, et al., 2019).

The Armed Forces Services Trauma Rehabilitation Outcome (ADVANCE) cohort study in 2022, found that among a group of 579 personnel, wounded in combat during the UK’s deployment to Afganastan (Operation HERRICK 2004-14), there was a notable prevalence of PTSD (16.9%), depression (23.6%), anxiety (20.8%) and mental health issues (15.3%) (Dyball, et al., 2022).

In the UK, Scandinavia and some select European regions, the use of patient diaries has been implemented to facilitate retrospective reflection on the critical illness experience (Griffiths and Jones, 2007).  Qualitative research findings indicate that both patients and relatives welcome the use of a diary, expressing a positive reception to its implementation (Phillips, 2011). 

Diaries are valuable communication tools for patients, helping them strengthen their connections to their family and validate their memories (Backman and Jones 2011).  Families also find diaries meaningful, as they serve as a link to their loved one and provide clarity and coherence ( (Beg, et al., 2017). These diaries also serve to confirm information related to both the patient and their families ICU experience, potentially contributing to an improved perception of their care received in ICU (Backman & Jones, 2011).

Identifying a Target Population

In a review by Beg at al. in 2016, patient diaries were found to be effectively introduced to a range of medical, surgical, and mixed ICUs, yielding positive outcomes.  Many of these studies focused on patients who had spent at least 48 hours in ICU and were undergoing mechanical ventilation and ongoing sedation.

The review also highlighted that the selected studies had specific exclusion criteria for diary implementation (Beg et al. 2016).  These criteria included neurocognitive impairment, pre-existing psychiatric conditions such as anxiety, depression, and PTSD.  The rationale behind these exclusions was that memory recall could be compromised in this population group, potentially diminishing the benefits from the diary intervention (Beg et al.2016). 

The prevalence of anxiety, depression and PTSD within the British Armed Forces can vary depending on factors such as deployment experiences, combat exposure and length of service and individual resilience (Dyball et al. 2022). Therefore, arguably, this may be a considerable proportion of military personnel. Considering these patients may be the group at highest risk of phycological morbidity, they may benefit from the most ICU diary.   The use of the diary on operations in this patient population may be a relevant consideration (Backman & Jones, 2011).

References

Akerman , E., Ersson, A., Fridlund, B. & Samuelson, K., 2013. Preferred content and usefulness of a photodiary as described by ICU-patients--a mixed method analysi. Aust Crit Care, 26(1), pp. 29-35.

Backman, C. & Jones, C., 2011. Implementing a Diary Programme in Your ICU. ICU Management & Practice, 11(3).

Beg, M., Scruth, E. & Lui, V., 2017. Developing a framework for implementing intensive care unit diaries: a focused review of the literature. Aust Crit Care, 29(4), pp. 224-234.

Blair , T., Eccleston, S. & Binder, H., 2017. Improving the Patient Experience by Implementing an ICU Diary for Those at Risk of Post-intensive Care Syndrome. Journal of Patient Experience , 4(1), pp. 4-9.

Dyball, D. et al., 2022. Mental health outcomes of male UK military personnel deployed to Afghanistan and the role of combat injury: analysis of baseline data from the ADVANCE cohort study. The Lancet, 9(7), pp. 547-554.

Phillips, C., 2011. Use of patient diaries in critical care. Nurs Stand, 26(11), pp. 35-43.

Righy, C. et al., 2019. Prevalence of post-traumatic stress disorder symptoms in adult critical care survivors: a systematic review and meta-analysis. Crit Care, 11(23).