“Last night, the porters took me to the basement in a supermarket cart. I was greeted 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 planning to kill me and my baby, and I saw one of them take a gun out of his bag. “
“There was a wild animal ravaging the hospital market, attacking everyone until the police shot him.”
These are the terrifying or bizarre experiences that I hear daily as a psychologist working in intensive care units (ICUs) and in the Covid-19 wards of a London hospital. The stories are hallucinations or delusions of delirium in the ICU, a syndrome caused by drugs, infections, lack of oxygen and other medical reasons. But for patients these views are vivid and unquestionably real.
Up to 80% of ICU patients experience delirium, particularly those who are sedated to help them tolerate time on a ventilator. These patients usually receive a cocktail of psychotropics (drugs that affect their mental state) to promote calm, comfort, sleep and security, but which also cause amnesia, confusion and delirium.
Delusions usually disappear before people return home, but delusions, along with traumatic medical events, can haunt people in flashbacks and nightmares for months or even years.
These scary and intrusive memories are part of the post-ICU syndrome (PICS). This affects the body – leaving patients in pain and serious breathing, muscle or joint problems – but also the mind. The research suggests that one in three has “brain fog” or problems with concentration, memory or the ability to plan or organize their lives. Up to 50% can develop severe 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 direct or manage their finances. One third of ICU survivors who previously worked do not return to their jobs.
The psychological impact of severe Covid-19 is not qualitatively different from other critical illnesses, but many more people have been affected than normal. In our hospital, during this latest outbreak, we had more than 100 people in the ICU at the same time, compared to our normal 35.
And during Covid-19, the conditions in the ICU are even more frightening: no family at the bedside, employees in PPE like aliens, little time to talk or hold hands, overcrowded wards with few windows and the constant hum of monitors and audible alarms. The delirium seems more profound than normal, with patients taking weeks to return to normal.
It is too early to know the long-term psychological impact, but the first data suggest that about 28% of people who were in the ICU with severe Covid-19 have PTSD, 31% depression and 42% anxiety one month after the hospital.
Of course, thousands of other people recover well and feel profound gratitude that their lives have been saved. Many ICU survivors think it is a second chance in life, a chance to grow. As I write, an email arrives from an ex-patient who is experimenting with art, decorating her apartment and making old clothes. She adopted a song by Nina Simone to overcome the pandemic: “It is a new dawn / It is a new day / It is a new life for me / And I am feeling good”.
Another survivor, journalist David Aaronovitch, belongs to a group of patients who help us conduct national research to improve psychological care in the ICU. He says: “The five days of delirium were the worst days of my life, without exception. ICU patients are terrified of their lives. If there is anything we can do about it, we should. “
ICUs are trying to meet the challenge. When I entered the field 10 years ago, there were a handful of ICU psychologists in the UK. We set up a network to defend the function and today we are 80. We are essential members of rehabilitation teams, alongside physiotherapists, nutritionists, speech therapists therapists and others.
The rehabilitation teams assume the roles of doctors and nurses. They save people’s lives; we help them get back to the life they want to live. National guidelines say that rehabilitation should start early in the ICU, continue during hospitalization and later, and that all ICUs must have a psychology team. ICU psychologists assist patients with delirium, panic, bad mood or nightmares when they wake up and learn to breathe and walk again.
About half of the hospitals with ICUs have multidisciplinary follow-up clinics that patients visit after two to three months, to assess physical and psychological recovery. Here, they can discuss intriguing experiences in the ICU and fill memory gaps and wasted time. If problems are detected, we refer patients to medical services, community rehabilitation clinics or clinics specializing in psychology.
Although progress has been made, 50% of hospitals do not offer ICU follow-up. Many Covid patients hospitalized during the first emergency outbreak were stranded while community services struggled to cope. Last week, our ICU follow-up team called a young mother of three who was in the ICU for four months in 2020 with serious complications from the virus. She is now unable to walk and has severe depression and PTSD. As she speaks little English, her teenage son tries to seek services for her. We contacted the providers to get the help she needs, but how many other people are in this situation?
For some, a lifeline may be launched by post-ICU support groups administered by hospitals or by the ICUsteps patient charity. At our group’s first online meeting, people said they were going through a difficult time. A man, formerly a fit athlete, is still partially confined to bed and receiving oxygen, with scars on his lungs, a year after contracting Covid-19. A young woman faces many complications and operations. Several people have not left their homes since the beginning of the pandemic for fear of returning to the ICU. Some still struggle to distinguish the reality of the nightmares of the ICU.
They all shared stories generously and gave understanding and encouragement to others. They later told us that the reunion was exciting and painful, but a crucial step in recovering from intensive care. For anyone who is reading this 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 a principal psychologist in intensive care at University College Hospital, an honorary associate professor at University College London and co-chair of UK Intensive Care Psychology (PINC-UK) and the post-Covid Rehabilitation Psychology Network