The role of the Case Manager supporting a client after an ICU experience
Introduction
Although I am relatively new to case management, I have many years of experience caring for patients with traumatic injuries and illnesses within the acute hospital setting. Most of my experience has been in the intensive care unit (ICU), where I worked for seven years. During that time, I supported multiple patients and their families following life-threatening conditions.
The impact that intensive care and critical injury and illness can have on a person and their families is immense. The effect of an intensive care stay is long and enduring, and research shows it has lasting effects on clients. Understanding this trauma is vital in the assessment of each individual. By understanding the nature of their trauma, the reasons why they are traumatised, and the impact this can have on their everyday life, we can improve our understanding and expectations of clients and their families.
Understanding the ICU experience and its impact
Reflecting on my ICU role, I recall a client who had suffered a hypoxic brain injury. He was a young man, only seventeen at the time. He spent over two months with us in intensive care. Throughout that time he was intubated, sedated, and suffered confusion and pain, with a 50% chance of survival. Every day, the family visited their loved one, experiencing a whirlwind of emotions each time they saw him. They watched as I increased his support on the ventilator, listened to every sound from the monitors, and asked about his cardiovascular support and whether it had improved from the day before. They held on to every piece of hope and were heartbroken at times when his survival appeared less likely.
During the time the client was intubated and sedated, there were multiple attempts to get him breathing on his own and off the ventilator. Every time he was extubated (ET tube removed), the family had so much hope. But when he was off the ventilator and breathing on his own, he was confused and showed no evidence of recognising his mother – even fighting against her when she tried to hug him. This was traumatic for the mother, father, and the whole family. Eventually, after multiple chest infections, seizures, instability, and months of uncertainty, he was able to remain off the ventilator, and his confusion and seizures started to decrease. Finally, he was transferred to the ward and then to neurorehabilitation. Some clients, even though appearing confused, remember some – or all – of the events that happened in intensive care.
The reason I bring this story to light is that this client and his family suffered traumatic incidents every day. We do not know the levels of understanding and memory he had at the time, as he was assessed as lacking capacity. These clients and their families suffer the ups and downs and mental torture of not knowing if they will survive and how they will present if they do. Perhaps unsurprisingly, research shows that a prolonged intensive care stay can result in Post-Traumatic Stress Disorder (PTSD). The experience of intensive care for the patient can mimic that of being at war – the fear of not surviving, the sensory overload or deprivation, the pain, the confusion, and the fear of death. This has a lasting impact, and it is important to understand the level of follow-up care a client and their family have had following an ICU stay. Follow-up care post-ICU is usually run by a senior sister and consultant from intensive care. It can be individual or in group settings depending on the level of funding that ICU has, but all ICUs must provide some level of follow-up care to patients and their families due to the overwhelming research confirming the impact of an ICU stay.
Working with a traumatised family
As a Case Manager, listening to and observing the client and their family is invaluable in order to begin to gain trust and to begin to forge a strong working relationship. The first step is to understand and acknowledge the trauma that the client and their family have endured and its impact on everybody involved. These families have been through a rollercoaster of emotions before they get to us, even if this is a new injury. Sometimes, clients and their families may exhibit certain behaviours, beliefs, judgments, or approaches that can be challenging to manage. We need to remind ourselves that these clients have experienced a significant loss of control for prolonged periods following their injury, and this lack of control can be associated with an intrinsic fear of death as a result. There may inevitably be residual fear, uncertainty and anxiety about the next rehabilitation steps, clinical support and what the role of the Case Manager is going to be. It will also take time for the client and their family to begin to have the confidence to look ahead to the future and to learn to be open to suggestions and ideas for them to consider.
Although clients do get some follow-up care provided by ICU support, this is often quite limited, and resources to provide further help are sparse. Along with psychosocial support, the ICU follow-up care can identify physical issues such as muscle atrophy from prolonged periods of sedation, and they can refer for further physiotherapy, but this may not always be adequate for the clients we support here at ILS. Research shows that providing additional psychological support over and above that provided by statutory services and involving the multidisciplinary team (MDT), can maximize the rehabilitation potential and minimise some of the psychological effects following a life-threatening injury. In our roles as Case Managers, we always involve the client and their support in all decisions we make if we can reasonably do so, and we should support them in feeling an element of control over any treatment or action planned. It’s very important for them to feel they have some autonomy over their bodies especially after the enforced loss of control they experienced in the hospital. Sometimes families may seem challenging to work with due to their desire to take back full control, and this may not always align. Suggesting psychological support to families can often help in managing this. However, sometimes we have to accept that the families need to retain that feeling of control because it can be so deeply rooted in the initial injury, associated loss of control and decision making and the very real fear of losing their loved one.
If a client has had an ICU stay following their injury, it is therefore very important to understand what support they have had from the ICU after their stay, what has worked, and what could be developed further before we begin to establish a way of working with them. For example, we might seek to source and engage a psychologist who has specific specialist knowledge of intensive care as their training would put them in a strong position to reassure and to understand the client and their family and what they have been through when viewed through the lens of a prolonged ICU stay. This support could be invaluable, and their input may be fed into how to approach the next steps in the client’s rehabilitation and to identify the priorities that are important to them.
Conclusion
In summary, understanding the client’s background is crucial to our role. It helps us build empathy identify the appropriate MDT for them, and most importantly, collaborate with clients and their families to foster a sense of autonomy and control over their own bodies and lives. Many of our clients will feel a sense of fear around healthcare professionals because of the negative experience link their brains have created during their hospital admission. Understanding the risk of PTSD, the need for autonomy, and how we can help them moving forward can help us work together with our clients in a positive way.
Every Case Manager at ILS brings a unique background and a wealth of experience in their chosen clinical field. We draw on this experience when working with clients, while also taking a holistic view of them as individuals. A brain injury is just one aspect of their history, their personality, preferences, interests and hopes for the future all begin to emerge as we build and establish a relationship with them. Where appropriate, working in collaboration with their family fosters a team approach, ensuring the client feels safe, secure and understood by everybody around them. Many clients require support workers, and some may even need a 24hr care team, which we can organise. It is vital that the client’s needs and wishes remain at the centre of every recommendation made, and every choice offered, ensuring they feel included as much as possible in key decisions.
Case management for catastrophically injured clients is often a long-term relationship, so using our understanding of their injury and ensuing treatment experience is key to creating a firm foundation as soon as we begin working together.
Finding the right Case Manager for the client is therefore so important. Once a good match is found, the teamwork will soon begin to yield the best results for the client and maintain the trust that the client and their family have placed in their professional support network.
Author: Ellen Selvey, Case Manager
This article was also published on WWW.NRTIMES.CO.UK on 25th February 2025