‘Last night the porters took me to the basement in a supermarket trolley. I met my monks who stole my soul and turned me into a zombie. I woke up in my own coffin. ”
‘I heard the nurses whispering behind the blue curtains at night. They were planning to kill me and my baby, and I saw one of them pull a gun out of her handbag. ‘
“A wild animal fell around the hospital and attacked everyone until the police shot it.”
These are the terrifying or bizarre experiences I hear daily as a psychologist working in the intensive care units (ICUs) and Covid-19 wards in a London hospital. The stories are hallucinations or errors of ICU delirium, a syndrome caused by drugs, infections, oxygen deficiency and other medical reasons. But for patients, these visions are vivid and unequivocal.
Up to 80% of ICU patients have delirium, especially those who are anesthetized to help them endure time in a ventilator. These patients often receive a cocktail of psychotropic drugs (drugs that affect their mental state) to promote calm, comfort, sleep and safety, but which also cause memory loss, confusion and delirium.
The delirium usually disappears before people go home, but the delusions, coupled with traumatic medical events, may haunt months or even years in flashbacks and nightmares.
These narrow, penetrating memories form part of the post-ICU syndrome (PICS). It affects the body – leaving patients with pain and severe breathing, muscle or joint problems, but also the mind. Research indicates that one in three have ‘brain fog’ or have problems with concentration, memory or the ability to plan or organize their lives. Up to 50% may develop severe anxiety, depression or post-traumatic stress disorder.
It is not surprising that PICS has a huge impact on people’s quality of life, relationships and livelihoods. People forget to take important pills, or lose the ability to manage or manage their finances. A third of ICU survivors who have worked before do not return to work.
The psychological impact of severe Covid-19 does not differ qualitatively from other critical illnesses, but many more people are affected than usual. In our hospital, during this last boom, we had more than 100 people in ICU at the same time, compared to our normal 35.
And during Covid-19, ICU conditions are even more frightening: no families with bed staff, staff in PBTs who look like strangers, little time to talk or hold hands, overcrowded halls with few windows and the constant hum of monitors and piepalarms. The delirium looks more complicated than usual, and patients take weeks to wake up to normalcy.
It is too early to know the long-term psychological impact, but initial data suggest that about 28% of people who had a severe Covid-19 in the ICU, a month after hospitalized PTSD, 31% depression and 42% had anxiety.
Of course, thousands of other people recover well and feel very grateful that their lives have been saved. Many ICU survivors believe it is a second chance at life, a chance to grow. As I write, an email from a former patient experimenting with art adorned her apartment and made new clothes from old ones. She adopted a Nina Simone song to get through the pandemic: “It’s a new dawn / it’s a new day / it’s a new life for me / and I feel good.”
Another survivor, journalist David Aaronovitch, belongs to a patient group that helps us conduct national research to improve psychological care in ICU. He says: “The five days of delirium were the worst days of my life, but nothing. ICU patients are terrified of their lives. If we can do anything about it, we must. ”
ICUs are trying to meet the challenge. When I entered this field ten years ago, there were a handful of ICU psychologists in the UK. We set up a network to combat the role, and today there are 80 of us. We are important members of rehabilitation teams, together with physiotherapists, dieticians, speech and language therapists and others.
Rehab teams take over where doctors and nurses stop. They save people’s lives; we help them resume the life they want. National guidelines state that rehabilitation should begin early in the ICU, continue through the hospital and thereafter, and that all ICUs should have psychological staff. The ICU psychologists help patients with delirium, panic, low mood or nightmares, while waking up and learning to breathe and walk again.
About half of hospitals with ICUs have multidisciplinary follow-up clinics that attend patients after two to three months, to review physical and psychological recovery. Here they can discuss confusing ICU experiences, and fill in their memory and lost time. If problems are detected, we refer patients to medical services, community rehabilitation or specialist psychology clinics.
While progress has been made, 50% of hospitals do not offer ICU follow-up. Many Covid patients admitted to the hospital during the first boom were stranded because community services were struggling to cope. Our ICU follow-up team last week called a young mother of three children who was in ICU for four months in 2020 with serious complications from the virus. She cannot walk now, and has severe depression and PTSD. Since she speaks little English, her teenage child tries to rush services for her. We contacted suppliers to get her the help she needed, but how many others are in this predicament?
For some people, a lifeline may be thrown by support groups to the ICU run by hospitals or by ICUsteps of the patient. At the first online meeting of our group, people said they were getting very heavy. One man, who was previously a fit athlete, is still partially wrapped in bed and oxygen, with scars, a year after he contracted Covid-19. A young woman has many complications and surgeries. Several people have not left home since the pandemic began, for fear they would return to the ICU. Some still struggle to discern the reality of ICU nightmares.
Everyone shared generous stories and gave others understanding and encouragement. Later, they told us that the reunion was emotional and painful, but an important step in their recovery from intensive care. For anyone reading here and on the road to recovery: know that you are not alone, and that help is available.
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Dr Dorothy Wade is Chief Psychologist for Intensive Care at University College Hospital, Honorary Associate Professor at University College London, and Co-Chair of Psychologists in Intensive Care, UK (PINC-UK) and Rehabilitation Psychology at Covid.