ICU Diary – Insights from a young couple

An interview with Jannik Kuzma and Larissa Kuzma and with Prof. Dr Uwe Janssens For this issue of SciencePulse, we interviewed Jannik Kuzma (Hagen am Teutoburger Wald, Germany), an enthusiastic soccer player born in 1995. During a soccer match on 5 July 2015, he collided head-on with the opposing goalkeeper, resulting in multiple cranial injuries with cerebral haemorrhage and coma lasting 4 weeks. His wife Larissa Kuzma (28) accompanied him and wrote her bachelor thesis on the subject of ICU diaries. She is a qualified nurse since 2019 and a Master of Palliative Care since 2024. Both reported their valuable personal experiences with the ICU diary. Prof. Dr Uwe Janssens is the director of the Department for Internal Medicine and Intensive Care Medicine at St.-Antonius-Hospital Eschweiler, Germany. He is chair of the Section Ethic of the German Society for Intensive Care Medicine and Emergency Medicine. He gave us some insights into the scientific evidence and ethical considerations on this topic. Larissa Kuzma: An ICU diary is kept by the treating professionals and relatives during the period of sedation and ventilation of patients. It usually describes events and developments. It originated as a tool for nurses, but it has become a multiprofessional task and is written by various professionals involved in the patient’s care. The ICU diary is written in the hope that the patient will be able to read it later and reconstruct the period of unconsciousness. This can also be helpful for the people who write in the diary, for example, by writing down feelings and worries that are troubling the relatives. The caregiver's gut feeling plays an important role in determining whether the ICU diary is helpful for the particular family, based on discussions with family members and observations. Uwe Janssens: Certainly, all patients with a disturbance of consciousness lasting ≥ 3 days should be considered for keeping an ICU diary. Extended indications are: (a) patients with a temporary disturbance of consciousness without sedation or ventilation, (b) parents of premature babies and (c) relatives of dying patients. The concept of an ICU diary should be established in an interdisciplinary manner, and all members of the treatment team of an intensive care unit should be familiar with this communication tool and offer it to relatives or patients as needed. In addition to nurses and physicians, all members of the treatment team, including physiotherapists, speech therapists, social services, hospital chaplains and, of course, relatives, should make entries in the ICU diary. Jannik Kuzma: Especially in the case of an emergency admission to the ICU, as in my case, patients can often remember the first day only vaguely or not at all. The very detailed description of my brother on the first ten pages of the diary, which was made for me and laid out at my bedside, helped me to process my story better, and the other entries followed almost seamlessly. I myself have no memory of my accident or the rest of my coma. Through these texts, I am able to understand a bit of what my accident triggered in my environment, who found out about it and how, and what was then done. Other entries may include events, descriptions of my condition, developmental steps, e.g. independent breathing or mobilization, and descriptions of the environment. For example, reading the ICU diary informed me that my family jumped for joy the first time I moved my finger to the music ‘How beautiful you are’ and pointed to the jukebox. I was also told about the 2015 women’s soccer world champion, thanks to the ICU diary Larissa kept separately for me. Other content may include the feelings of the relatives. ‘I’m very worried about you and I’m afraid you won’t wake up again. But you can do it. Maybe you’ll open your eyes for me soon’. Jannik’s ‘picture diary’ is particularly special to him. The content of an intensive diary can also include photos, but this has to be weighed very sensitively and ethically. Jannik Kuzma: My family decided to keep a picture diary besides the written diary. This impressively underlines the critical state I was in at the beginning. In addition, the pictures make the written lines in the ICU diary real. The picture diary is of great importance to me as it records the positive development of my condition in pictures and makes the story more tangible for me. Uwe Janssens: The effect of an ICU diary can be very diverse and far-reaching. It is important not only for patients, but also for their relatives and the intensive care team. A systematic review found that most patients reported positive experiences with the ICU diary: it helped them to understand what they had gone through and survived during a critical illness, supported them in better understanding the recovery process, reconciled nightmares and delusional memories, recognized the importance of the presence of family and relatives during their stay in the ICU, and gave medical staff a human image.1 Patients appreciated nurses’ notes, but would also welcome input from other ICU staff. A systematic literature review and meta-analysis examined whether ICU diaries reduce the risk of posttraumatic stress disorder (PTSD), anxiety, and depression in patients and relatives. In ICU patients, there was a nonsignificant reduction in PTSD, while in relatives, PTSD was significantly reduced. Furthermore, anxiety and depression were significantly reduced in patients who used an ICU diary. Another recent systematic review and data synthesis analyzed the qualitative evidence on the experiences of caregivers and health professionals with writing and reading intensive care diaries.2 The ICU diary is important for caregivers, whether as a source of information or as a way to help them cope with their feelings and strengthen their relationship with the patient and relatives. Caregivers perceive the ICU diary as beneficial because it allows them to reflect on their role in patient care. Jannik Kuzma: As I cannot remember anything, I can trace my story through the ICU diary. It also allows me to understand, at least in part, how my relatives felt. The diary gave me new motivation and resilience, especially during my further inpatient treatment and rehabilitation. Through the entries, I learned that many people believed in me, which led me to turn this motivation into ambition and strength. Another important aspect is that the diary made it easier for me to deal with my accident psychologically, and I am convinced that I was saved from even more serious psychological sequelae with the help of my intensive care diaries. Before the ICU diary has an influence on a patient, it has already had an impact on the people involved in writing: Expressing thoughts and feelings and putting them down on paper, writing to process the experience, a quiet place that does not give answers, does not ask questions and, above all, does not determine right and wrong. Nevertheless, writing in an ICU diary forces you to come to terms with what you have experienced and with your thoughts and feelings. This is a piece of coping that begins by writing it down. Larissa Kuzma: In the first moment of writing, it had an effect on me as a relative, as I was able to get my feelings like fear, worry, sadness and anger off my chest. I wrote it in the hope that I would be able to talk about it with Jannik. The diary gave us the opportunity to start a conversation about the time in the coma. In the beginning I read it to Jannik, as he was unable to read cognitively and because of the blindness in his left eye caused by the accident. Later he could read it himself and to this day he still looks at his diaries every now and then. Writing gave me hope and new strength to get through the situation. Additionally, the ICU diary gives relatives a task. They often sit helplessly at the bedside, not knowing what to do and how to help the patient. Writing made me feel needed. I came to visit and went straight to the diary, leafed through it, read what the nurses and other professionals had written, and started writing in it myself. It also has a special effect on the multiprofessional team, especially the nursing staff. The diary allows them to see the patient from a different perspective. They learn a lot about the patient’s biography and environment and can integrate this into their care. They can also remind themselves that the patient is a human being and ‘remember and communicate the human dimension of the work’.3 Writing in the ICU diary allows nurses to sit at the patient’s bedside. They can take a break from their usually stressful daily routine and observe the patient in a special way. Larissa Kuzma: We found the entries from the various professional groups particularly important. It was helpful to read how Jannik was cared for when we were not with him. Jannik could read that nothing was done to him while he was unconscious that he wouldn’t have wanted – especially because at the time of writing it was not clear what he would remember afterwards or if he would remember anything at all. Uwe Janssens: Ideally, an ICU diary should be started as soon as possible after the patient has been identified as suitable. If the ICU diary is started at a later date, retrospective information on the start of intensive care should be added. Initially, entries should be made 1–3 times a day. Ideally, a brief summary of the course of events should be written after each shift. If the course of events is stable, a single entry per day of treatment may be sufficient. The first entry takes the most time, up to 14 minutes. Subsequent entries usually take no more than 5 minutes.4 It is unclear how long an ICU diary should be kept. In principle, it can continue to be kept even after the patient has been transferred. The writing style should be simple and understandable, and always address the patient directly. First of all, of course, the circumstances and events that led to the patient's admission to the intensive care unit should be described. Furthermore, the course of treatment should be documented, the daily condition, positive and negative developments in the course of the disease, elementary events concerning the patient in the intensive care unit as well as his personal environment in the private and professional sphere. In principle, it seems very useful to include pictures and photos in the ICU diary. However, the legal situation in Germany should be considered, which does not allow the depiction of patients who are unable to give consent. The protection of the personal rights of all parties involved must always be observed. The ICU diary should be given to the relatives. It would certainly be desirable to have a later appointment with the patient and members of the treatment team to reflect on the events when reading the ICU diary together. There are no known contraindications to keeping an ICU diary. It is not yet clear whether keeping and, in particular, reading an ICU diary has any side effects. However, it is possible that reading it could mean a renewed and distressing confrontation with the experience for patients and/or their relatives and could trigger so-called (negative) flashbacks.5 07.07., 4:20 pm Hello Jannik! Larissa here. I am here with your family. I am always very happy when your parents and Hendrik pick me up at 2.45 pm so that we can visit you. 14.07., 3:45 pm Hello Jannik! Mom here. Today you are really hyperactive. We’ve brought you some new sneakers; I hope you like them. Together with Sister Dagmar, we decided on blue. We had hoped that you would have a say in the choice, but unfortunately, that wasn’t the case today. We’re about to change with Hendrik and Nina, then we’ll all have a little break again. We’re incredibly happy about any progress you’re making. Mom Larissa Kuzma Bachelor of Science in Nursing and Master of Arts Palliative Care Franziskus-Hospital Harderberg, Niels-Stensen-Kliniken, Georgsmarienhütte, Germany Jannik Kuzma Former ICU patient suffering severe traumatic brain injury Prof. Dr med. Uwe Janssens Head of the Department of Medical Clinic and Intensive Care Medicine St.-Antonius-Hospital Eschweiler, Germany None declared.

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