“Last night the porters took me down to the basement in a supermarket trolley. I was met by hooded monks who stole my soul and turned me into a zombie. I woke up in my own coffin.”
“I heard the nurses whispering about me in the night behind the blue curtains. They are plotting to murder me and my baby, and I saw one of them take a gun from her handbag.”
“There was a wild animal rampaging through the marketplace in the hospital, attacking everyone until the police shot it.”
These are the terrifying or bizarre experiences I hear about daily as a psychologist working on the intensive care units (ICUs) and Covid-19 wards in a London hospital. The stories are hallucinations or delusions from ICU delirium, a syndrome caused by drugs, infections, lack of oxygen and other medical reasons. But to patients these visions are vividly and unarguably real.
Up to 80% of ICU patients have delirium, particularly those who are sedated to help them tolerate time on a ventilator. These patients often receive a cocktail of psychotropics (drugs affecting their mental state) to promote calm, comfort, sleep and safety, but which also cause amnesia, confusion and delirium.
The delirium usually resolves before people go home, but the delusions, along with traumatic medical events, may haunt people in flashbacks and nightmares for months or even years.
These scary, intrusive memories form part of post-ICU syndrome (PICS). This affects the body – leaving patients with pain and serious breathing, muscle or joint problems – but also the mind. Research suggests that one in three has “brain fog” or problems with concentration, memory or the ability to plan or organise their lives. Up to 50% may develop serious anxiety, depression or post-traumatic stress disorder.
Unsurprisingly, PICS has profound effects on people’s quality of life, relationships and livelihoods. People forget to take important pills, or lose the ability to drive or manage their finances. A third of ICU survivors who previously worked don’t return to their jobs.
The psychological impact of severe Covid-19 is not qualitatively different from other critical illness, but many more people have been affected than usual. In our hospital, during this last surge, we had more than 100 people in ICU at a time, compared with our normal 35.
And during Covid-19, ICU conditions are even more frightening: no families at bedsides, staff in PPE resembling aliens, little time to talk or hold hands, overcrowded wards with few windows and the constant hum of monitors and beeping alarms. The delirium seems more profound than usual, with patients taking weeks to awake to normality.
It is too early to know the long-term psychological impact, but the first data suggests that about 28% of people who were in ICU with severe Covid-19 have PTSD, 31% depression and 42% anxiety a month after hospital.
Of course, thousands of other people make good recoveries and feel profound gratitude that their life was saved. Many ICU survivors feel it is a second chance at life, a chance to grow. As I write, an email has arrived from a former patient who is experimenting with art, decorating her flat and making new clothes from old. She has 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’m feeling good.”
Another survivor, the 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, bar none. ICU patients are terrified for their lives. If there is something we can do about it, we must.”
ICUs are trying to meet the challenge. When I entered this field 10 years ago, there were a handful of ICU psychologists in the UK. We set up a network to champion the role, and today there are 80 of us. We are crucial members of rehabilitation teams, alongside physiotherapists, dieticians, speech and language therapists and others.
Rehab teams take over where doctors and nurses leave off. They save people’s lives; we help them resume the life they want to live. National guidelines say that rehabilitation should start early in ICU, continuing through the hospital stay and beyond, and that all ICUs should have psychology staff. The ICU psychologists help patients with delirium, panic, low mood or nightmares, as they wake up and learn to breathe and walk again.
About half of hospitals with ICUs run multidisciplinary follow-up clinics that patients attend after two to three months, to review physical and psychological recovery. Here they can discuss puzzling ICU experiences, and fill in gaps of 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 don’t provide ICU follow-up. Many Covid patients hospitalised during the first surge have been left stranded as community services struggle to cope. Last week our ICU follow-up team phoned a young mother of three who was in ICU for four months in 2020 with severe complications from the virus. She is now unable to walk, and has serious depression and PTSD. As she speaks little English, her teenage child tries to chase up services for her. We contacted providers to get her the help she needs, but how many others are in this plight?
For some, a lifeline may be thrown by post-ICU support groups run by hospitals or the patient charity ICUsteps. At the first online meeting of our group, people said they were having a tough time. One man, previously a fit athlete, is still partly confined to bed and on oxygen, with scarred lungs, a year after contracting Covid-19. A young woman faces many complications and operations. Several people have not left home since the pandemic began for fear of going back to ICU. Some still struggle to distinguish reality from ICU nightmares.
All generously shared stories and gave understanding and encouragement to others. Later they told us the reunion was emotional and painful, but a crucial step in their recovery from intensive care. To anyone reading this who is on this road to recovery: know that you are not alone, and that help is available.
Dr Dorothy Wade is principal 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 the post-Covid rehab psychology network
This content first appear on the guardian