People admitted to intensive care have experienced feelings of being trapped in metal tubes, alien abduction, and having a gun to their head, amongst other things. While none of this really happened, for patients struggling with hospital-acquired delirium they seemed all too real.
These experiences are just some uncovered by the Critical Care Research Group at the University of Oxford. Lead researcher Julie Darbyshire explained: 'Delirium is a well-known consequence of prolonged stays in intensive care. Until now, research has focused on how medical staff can identify and treat the condition. But there has been almost no research on patients' experiences.'
Using a repository of in-depth interviews with patients and their family members held by the Health Experiences Research Group (HERG), in the Nuffield Department of Primary Care Health Sciences and published on the patient experiences website, www.healthtalk.org, the team re-analysed the transcripts for descriptions of delirium.
Dr Lisa Hinton from HERG said: 'Throughout the interviews we found an overwhelming sense of complete bewilderment and fear expressed in nightmares, altered realities and false explanations. Admission to intensive care is often a surprise and the experience is unlike even other areas of a hospital. With their senses limited, and their ability to communicate often hampered, it seems that people 'fill in the gaps' to create explanations for their experiences.'
However, those explanations are often false. One patient was surprised to discover that their ICU had just six beds, having built a mental image of a huge room with two levels. Another became convinced they were on a flying hospital, while a third was certain they had been kidnapped. Disturbing nightmares meant that some patients actively avoided sleep, setting back their recovery.
Sarah Vollam, Researcher and Intensive Care Nurse said, 'ICU staff are aware that patients may suffer delusions during their stay, but this paper offers a unique insight into what this is really like. It brings their experiences to life and demonstrates the power of qualitative research. The exploration of recurring themes in patients' delusions will assist ICU staff in their management of confused and hallucinating patients, as well as their general day-to-day practice.
One issue is that patients often have no control. Staff will be doing things but the patient may not know what is happening and frequently cannot ask. This may be one reason why some patients begin to develop paranoia, in a number of cases suspecting staff of wanting to harm them.
For others, reality blurs so that they cannot tell what is real and what has been a dream or hallucination. One patient saw all the people around their bed as plasticine figures like those in the Wallace and Gromit films.
The team say that the very real fear created through this confusion and uncertainty can set back patient recovery and leave traumatic memories even after leaving hospital. Their hope is that by raising awareness of how patients feel, research and medical practice can better help.
Julie Darbyshire said: 'For example, when delirium is identified staff often tell patients their experiences are normal – in a well-intentioned effort to reassure. Patients, however, know there is nothing normal about their experiences and would prefer to have that reality acknowledged.
'One simple change could help. Even when they cannot communicate, patients tend to have some awareness. Just explaining what is happening could help reduce the gaps in understanding where delirium can take hold.'
Patients can experience two forms of delirium:
- Hyperactive delirium – the patient becomes restless, agitated or aggressive.
- Hypoactive delirium – the patient becomes withdrawn and uncommunicative. It is often harder to diagnose in intensive care where patients’ condition, drugs and equipment might all make it harder for them to communicate.
Julie Darbyshire has written an Editorial for the BMJ about the problems of noise in the ICU and the link with ICU-delirium.
Lisa Hinton has also written in the BMJ about her own experiences of intensive care unit noise.
The original interviews were conducted by the Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, funded by ICNARC. Interview extracts from the original study are available on the www.healthtalk.org website run by the DIPEx Charity.
The earlier research completed by the Health Experiences Research Group was published in Critical Care 2008 (Field, Prinhja, and Rowan, Critical Care, 2008, 12:R21) and 2009 (Prinjha, Field, and Rowan, Critical Care, 2009, 13:R46).
Follow the University of Oxford Critical Care research team on Twitter @KadoorieCentre
The paper, "I Can Remember Sort of Vivid People…but to Me They Were Plasticine." Delusions on the Intensive Care Unit: What Do Patients Think Is Going On?, Julie L. Darbyshire, Paul R. Greig, Sarah Vollam, J. Duncan Young, Lisa Hinton, is published in PLOS One (http://dx.doi.org/10.1371/journal.pone.0153775).