Blog: Critical illness survivorship – challenges ahead
Published: 23 Feb 2021
For many patients, the experience of being admitted to intensive care units is unexpected and traumatic. Patients and relatives are usually unable to prepare for the time in critical care. Patients are very ill and often unable to understand or participate in decisions about their treatment. They may feel like they are dying. For those who survive, it can be a life-changing event that may leave them with temporary or permanent disabilities and significant psychological distress.
"There is an urgent need to ensure follow-up clinics and support groups exist for both Covid-19 and non-Covid-19 ICU survivors." - Pamela Page, Fellow
Survivors of critical illness frequently experience physical, psychological and cognitive impairment as a direct result of their critical illness episode. As the prevalence of these negative consequences became known, a group of experts from Johns Hopkins University and other experts around the world coined the term ‘post-intensive care syndrome’ (PICS) and PICS-F – the F to represent family members. There is a growing body of literature showing that family members suffer anxiety, depression and post-traumatic stress disorder (PTSD), during and after critical care.
My Churchill Fellowship travels were undertaken before the pandemic, but they have great relevance to the Covid-19 environment that we are now navigating in search of our ‘new normal’. We are in essence, in a liminal space that is deeply discomforting.
Covid-19 ICU survivors are more likely to develop PICS due to absence of family members and the severity of the illness which often requires more sedation. Therefore, there is an even greater need for physical, cognitive, psychological and social rehabilitation to combat PICS and the evolving post-Covid-19 syndrome known as ‘long Covid’. The impact of PICS and PICS-F is predicted to be more prevalent than usual, due to a higher incidence of delirium, the absence of family member presence in critical care, and the visual impact of being cared for by staff wearing personal protective equipment (PPE).
Early and sustained comprehensive rehabilitation with a coherent multi-disciplinary team helps to reduce muscle weakness, reduce delirium and improve cognitive function. Pre-pandemic, this was evident in the care delivered at the John Hopkins medical intensive care unit which I visited on my travels. This can be realised through effective pain relief and reduced sedation, together with an emphasis on delirium prevention. Family presence and participation in care is an embedded philosophy in the shock trauma critical care unit at Intermountain Medical Centre, Salt Lake City, which I witnessed to great effect. The philosophy of open visiting for family members, an active support group on the unit and the opportunity for involvement in care, all support survivorship and a reduction in delirium incidence.
Pamela (left) with Kate Tantam at a Johns Hopkins conference in Baltimore, USA
During the pandemic, the latter aspect of care has been curtailed dramatically. We have witnessed the distress of families unable to say goodbye to their loved ones. We have seen the moral distress that staff have experienced, as family absence forms a barrier to both formal and informal conversations and reduces knowledge of the patient’s own wishes. Technology has played a part in mitigation, but my Fellowship travels emphasised the importance of the physical presence of a family member for patients’ wellbeing, as well as benefits to the patient and staff.
Peer support can be a powerful tool for both survivors and family members. ICUsteps is the only UK charity that supports ICU survivors through the provision of information and 23 peer support groups across the UK. As a newly appoint trustee I am sharing the work from my Fellowship with the charity. This includes the work of Dr Kimberley Haines from Melbourne, Australia, which is part of a global initiative called THRIVE. Dr Haines has been researching a structured, co-designed peer support programme for ICU survivors and family members, highlighting the benefits of peer support in navigating life post ICU.
Guidelines from the UK Intensive Care Society, Faculty of Intensive Care Medicine (2019) and the National Institute for Health and Care Excellence (2009) all highlight the need for providers to deliver both patient support groups and critical care follow-up clinics in the UK. However, only 46 ICUs (48%) have access to critical care patient support groups, 48 critical care departments (52%) have formal follow-up clinics, and 25 (27%) have both. There is an urgent need to ensure follow-up clinics and support groups exist for both Covid-19 and non-Covid-19 ICU survivors.