Our Intensive Care Diary

It was a sunny summer day on Sunday, 5 July 2015, when I received a call at 4:30 p.m. from an unknown number. It was the mother of another player who was at the football match. I thought to myself: ‘Oh no! What has Jannik done now?’ She called for me to accompany you to the hospital because you had had a serious accident playing football. Together with my dad, I followed the ambulance. When we arrived at the emergency room, no one would let me see you. I just saw you being wheeled down the hallway in your bed and I desperately wanted to know how you were doing. It became very restless and hectic. My dad took me in his arms because he could already see how you looked from a distance. We waited three hours before I was allowed to see you. It was a huge shock for me to see you lying there with all the tubes and machines. The nurse said I should sit by your bed, stroke your hand and try to talk to you. Unfortunately, you didn't respond. (Lines from Larissa Kuzma's intensive care diary for Jannik Kuzma, then girlfriend, later wife). Jannik Kuzma was 19 years old at the time and football meant everything to him. In a friendly match, he was finally allowed onto the pitch in the 64th min. A teammate played a long pass forward, and Jannik sprinted after it at full speed. The opposing goalkeeper, realizing he was the last man on his team, rushed out of the penalty area towards the ball. Both players jumped up to claim it, but the goalkeeper missed and struck Jannik's head instead, leaving him unconscious on the ground. After that, everything went dark. Jannik remembered nothing of what happened after that: nothing about the ambulance, nothing about the CT and MRI scans, which revealed a massive traumatic brain injury with skull fractures and cerebral haemorrhages. For Jannik's family, it was a time of hope and anxiety as it was uncertain whether he would survive and, if so, what the consequences would be. I experienced this first hand as the loved one of Jannik at the time, but the nurse in me can confirm that a stay in the intensive care unit is a stressful experience not only for the patient but also for their relatives. They experience situations in which they often reach their limits. ‘What does it do to relatives when they see a loved one so helpless and vulnerable? When they approach a bed with tubes and machines and are overwhelmed?’ 1. It is precisely this experience that relatives report long after the intensive care stay. They often feel overwhelmed in the highly technical environment and experience negative feelings, such as fear and uncertainty. Patients in intensive care are often in a critical condition, requiring sedation and ventilation. This ‘artificial deep sleep’ 2 leads to impaired consciousness in the patient. This results in a poor sense of time in the intensive care unit. The treatment increases the risk of post-hospitalization physical and psychological sequelae for both the patient and their relatives. Symptoms such as anxiety, depressive disorders and even post-traumatic stress disorder can occur (3). One way of preventing these secondary illnesses is to keep intensive care diaries. These ‘are written by staff and/or relatives for patients with longer stays and impaired consciousness; they describe the patient's condition and developments in understandable language. Patients can read the diary later and process their experiences’ (3). It is important to note that the focus is not only on the patient but also on their family members, who must also be taken into account. The diary allows relatives to express their emotions, communicate with the patient during their stay and tell them what they have missed during that time (2). Fortunately, such an intensive care diary was written for me, because it is a constant companion in helping me process my accident and fill in the gaps in my memory, as I have no recollection of the accident or my four weeks in an induced coma. ‘The intensive care diary is a diary kept by nurses and relatives during the period of sedation and ventilation of a patient, in which events and developments are usually described. The patient can later read the diary and thus reconstruct and understand the time during which they were unconscious’ 4. Intensive care diaries have been used in Scandinavia since the early 1990s. In 2008, Nydahl and Knück advocated for the implementation of intensive care diaries in Germany. Since then, the diaries have been used increasingly in intensive care units. They are written by nurses, relatives and other healthcare professionals for patients with longer stays and consciousness disorders. The patient can read the diary after their stay to understand what happened during the time they were unconscious. I don't know how I would have got through that time without the intensive care diary. I was overwhelmed by so many emotions, and the diary gave me a place where I could express them. The diary didn't ask me any questions, it didn't laugh at me, and it didn't tell me that I had to deal with it. It is silent and endures everything. Jannik's first reactions are celebrated with enthusiastic entries in the intensive care diary: Nurses, friends and we as a family diligently noted down what was happening with and around Jannik. His first reactions, the first small movements of his arms and the wiggling of his fingers to his favourite music. The entries made by the nurses in particular gave us the feeling that Jannik was being well cared for and that we weren't missing anything. In the intensive care unit, several diaries were written for Jannik. One diary was always kept by his bedside and was maintained by his relatives, carers and therapists. I wrote two more on my own. Jannik's mother also created a photo diary for him. With the help of photos and videos, I was able to make everything much more tangible. Otherwise, I would never have believed it. In August 2017, Jannik began training with customs. The training started with a theory phase. It was summer, and all his colleagues went outside after class to play sports and have fun. Jannik, however, locked himself in his room and studied all day, as he found it difficult to retain the material due to memory problems caused by the accident. At some point, everything collapsed for him, he pulled the ripcord and took a break from his training. Jannik underwent psychosomatic therapy and realised that life is no longer what it used to be. The diagnosis followed: post-traumatic stress disorder and depression. During this time, Jannik often looked at his intensive care diaries. It gave him strength to realize everything he has achieved since the accident. Jannik is convinced that the intensive care diary was an important part of his recovery and that it is the reason why he is now feeling much better. Today there are still low points due to his diagnosis, but reading his diary repeatedly gives him courage. The diaries are of great value to everyone involved: for patients when they wake up and want to reconstruct their lost time, for relatives, who can let go of their feelings of anger, grief and fear. For nurses, physicians and therapists, because they experience a change of perspective, reflect and can build professional closeness. Without the diaries, Jannik would have missed 4 weeks of his life. With them, he has been able to come to terms with the lost time. Today, he has embraced his life again and is trying to live with his disabilities. It's a small measure, not expensive, not personnel- or time-intensive, but it has great significance for us and our history in our lives. The authors declare no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request. 2022 at our wedding (seven years after the accident) Jannik Kuzma, a former intensive care patient in 2015, is a customs officer Larissa Kuzma, former relative in 2015, Bachelor of Science in Nursing, Master of Palliative Care