Surviving Delirium: Life, death and in between in Intensive Care Tom Jenkins investigates the little-understood delirium of Intensive Care Units

The idea of a ‘light at the end of the tunnel’ near death experience has entered into common folklore. But for those teetering on the brink in Intensive Care, under heavy sedation and analgesia, the experience can be infinitely more complicated, bizarre and downright terrifying.

Delirium in IC is described by the Royal College of Psychiatrists as “a state of mental confusion that can happen if you become medically unwell… also known as an ‘acute confusional state.’” It can present as restlessness, agitation, hallucinations and delusions, but also lethargy. The causes are numerous and, more often than not, a combination of heavy medication, sensory deprivation, lack of natural sleep, changing blood sugar and sodium levels and a sense of isolation and separation from everyday life. Up to 80 per cent of patients in IC experience some form of delirium.

In a startling 2012 BBC Radio Four documentary titled ‘Hearing Ragas’, the classical musician Professor Paul Robertson describes a series of vivid hallucinations whilst in a medically induced coma for six weeks, following life-threatening surgery on a burst aorta. What starts as a deeply spiritual experience orbiting a serene Hindu goddess whilst enveloped by the sound of ragas (Indian melodic modes), quickly descends into a series of ever more nightmarish scenes involving defecating demons and a ship of lost souls at the bottom of the ocean.

Victoria Hume, a former NHS arts consultant and practitioner, and musician, interviewed several former IC patients about their experiences for a songwriting project. Common themes, related to goings-on in the IC units themselves, emerged.

“Some people’s hallucinations are brief and some go on for days – in their minds anyway,” she tells me. “What happens more often than not is something gets picked up from the immediate environment and it gets – perverted is a strong word – changed into something else. So people have paranoia about staff trying to poison them, which is probably about IV lines going into your arm. Being on forms of transport is another – sometimes they are actually on mattresses that move, it’s a way of stopping bedsores, or they’ll be taken from the IC unit to have a scan, but they won’t be completely conscious. It’s not absolutely clear what constitutes unconscious and conscious, and how being ‘sedated’ fits in – so they won’t be able to understand what’s going on.”

However, much to her surprise, not all of her subjects’ experiences were bad. One woman believed she was resting comfortably in a bird’s nest. Another interviewee – a truck driver by day – experienced something akin to a scene from the earliest days of the industrial revolution: he and his mother travelling down to the (nonexistent) family fish farm in Cornwall to quell rioting workers, all of whom were dressed in Victorian attire.

It has been suggested that until recently, many healthcare professionals did not properly understand the ramifications of these experiences, with the focus firmly on physical wellbeing and recovery. It’s estimated that over 50 per cent of surviving Intensive Care Unit patients suffer some form of post-traumatic stress disorder or depressive illness, and delirium itself has been linked to cognitive impairment, in some cases so severe as to mimic the symptoms of Alzheimer’s. In an illuminating TED talk, the artist Nancy Andrews describes her battle with PTSD following an IC delirium experience as one of “nightmares and flashbacks” and “difficulty doing the things in my life that had previously been easy”. Many former IC patients choose not to discuss their ongoing psychological problems for fear of being branded mentally ill. “Was I going crazy?” ponders Andrews.

Often memories of delirium are more vivid and long lasting than those of the original trauma itself. “One woman had had an enormous car crash; she’d broken everything except her back and her neck and one thigh bone,” says Hume. “At one point in the interview I said, ‘so the hallucinations were actually quite a small part of what you’ve been through’ and she said, ‘no they were the thing that disturbed me the most.’” In ‘Hearing Ragas’, Paul Robertson describes a desperate craving for meaning after his traumatic experience, and the lingering uncertainty of what was real and what wasn’t.

Ultimately, patients in IC “couldn’t be more sick and still be alive”, says Melanie Granger, an IC sister at the Royal Berkshire Hospital. “There is a sense that your soul knows the closeness of the call. You can’t sedate the soul, you can’t sedate your mind.” One of Hume’s interviewees remembers “being on the edge of a cliff, looking down into the abyss. It was very dark, [a] slight hissing noise in the background. I think I sort of knew that there was a life-death balance there; and there was this compulsion – force of gravity – trying to draw me over the edge. But I wasn’t scared or frightened. More irritated. Because I sort of said, ‘OK God, if I’ve got to go, get on with it.’”

Excerpts from interviews conducted as part of Delirium by Victoria Hume

Words: Tom Jenkins
Illustration: Robert G. Fresson

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