What ICU patients remember, and what their families can’t forget
Written By Swera Sathiyaseelan
She drifted in and out of consciousness, her memories a blur. One thing she did remember, though, was the distorted faces of her children and husband smiling, ready to attack her.
None of it had happened.
But to her, it was real.
- An ICU survivor
Patients who survive the intensive care unit have varying experiences, with many emerging with incomplete or distorted recollections of their time at the unit. Instead of clear memories that mirror the accounts from their families or clinical teams, they hold onto fragments, ranging from dream-like visions to disturbing hallucinations (1,5). When patients’ quality of life deteriorates after leaving the intensive care unit, they develop post-intensive care syndrome (9), where they experience daily life difficulties. (8) It is thus vital to understand how distorted memories affect post-ICU recovery to improve holistic care of critically ill patients and to provide adequate emotional support to their families. It can be argued that one of the most striking aspects of intensive care is the contrast between an ICU patient’s fractured internal world and the family’s vivid external one during their stay at the hospital.
The Fractured Memories of the Patients
From the ICU patient’s perspective, the unit can feel like a dreamscape rather than a medical environment. A multitude of physiological and pharmacological factors could contribute to this perception, including severe physiological stress, multi-organ failure, hypoxia, respiratory failure, infection, sedatives, analgesics, and delirium-inducing medications that can blur consciousness. Delirium, which affects a large proportion of ICU patients (5), is associated with vivid and frightening delusional memories, hallucinations (1), and persecutory delusions (the delusion that someone is attempting to cause them harm). (3) Patients may even perceive their family members at the bedside as strangers or even attackers, which can be emotionally taxing for their loved ones. Those who are mechanically ventilated, in particular, have a higher risk of experiencing delirium (2,7). One study showed that some patients continue to suffer from persistent memories of delusional experiences long after discharge, from three to as long as twelve months. (6) In some cases, patients have almost no coherent memory of their admission at all. For people who have these experiences, they can still feel intensely real at the time, even if they later dissolve into confusion.
The Vivid Memories of the Family
The introductory patient account displays how worried and confused the patient’s family can feel, witnessing their loved one undergoing persecutory delusions (3) as her children were extremely upset by their mother’s attempts to push them away in delirium. In her live recount, she explained how their faces were distorted into unfamiliar ones, and even though deep down she knew it was them, she was gripped by enough fear to try to distance herself. We can thus see how this impacts the family directly, and in contrast to patients, families can experience the sharp, unfiltered reality of the ICU, remaining fully aware and emotionally engaged throughout the whole stay at the unit. They wait in excruciating anticipation, witnessing the severity of the illness, the critical moments, and the invasive interventions required. Many recount long hours of waiting, persistent fear for their sedated or ventilated loved ones, and the feeling of helplessness. These experiences can also lead to long-term psychological effects, such as intrusive recollections or symptoms of post-traumatic stress disorder (PTSD).
PTSD, PICS & PICS-F
PTSD is a formal psychiatric diagnosis following exposure to traumatic events, and it can be confused with PICS (post-intensive care syndrome). Whilst they both describe psychological consequences that can follow critical illness, PICS is a broader term for the physical, cognitive, and emotional impairments experienced by ICU patients. PICS-F (post-intensive care syndrome family) is usually used to describe the effects on the family. PTSD and PICS/PICS-F can be prevalent in both the patients and their families after the ordeal. Families may struggle with the lingering effects of seeing a near-death experience, finding it difficult to process the trauma, and supporting a recovering patient who doesn’t remember how much they endured. Patients, however, often have to grapple with gaps in their memory, shame or confusion about hallucinations, difficulty piecing together what happened, and anxiety triggered by medical settings, worsening post-intensive care syndrome. While not all ICU survivors develop PTSD, a meta-analysis indicated that the prevalence of PTSD-related symptoms associated with ICU stays was 19.83%. (4)
Bridging Memory Gaps & Screening
This condition, therefore, can have a significant impact - often long-term - on the quality of life of many survivors and their families, highlighting the importance of screening for PTSD symptoms so care and support can be provided accordingly,; this is which is also recommended by the Faculty of Intensive Care Medicine in the UK via referral pathways and mental health services (12). Screening can be implemented through means such as ICU diaries that have been trialed (11), which are written by staff and family and read by the patients after discharge to help reconstruct memory gaps and reduce PTSD symptoms. Evidence from a recent BMJ study (10) also shows that brief narrative exposure interventions led by GPs can help reduce PTSD symptoms in patients significantly.
Ultimately, the ICU is not a single experience, but two shared narratives from both the patient and their loved ones. Recognising both perspectives enables clinicians to support the full emotional, physical, and psychological journeys of everyone involved. When patients recover and families reunite, their narratives must be acknowledged and shared, allowing patients to make sense of what they cannot remember and families to process what they cannot forget.
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References:
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