Last night, the porters took me to the basement in a supermarket cart. I was met by hooded monks who stole my soul and turned me into a zombie. I woke up in my own box. “
“I heard the nurses whisper about me at night behind the blue curtains. They plan to kill me and my baby, and I saw one of them pull a gun from her purse. “
“There was a wild animal racing across the market in the hospital and attacking everyone until the police shot it.”
These are the terrifying or bizarre experiences I hear every day as a psychologist working in the intensive care units (ICUs) and Covid-19 units of a London hospital. The stories are hallucinations or deliriums of ICU delirium, a syndrome caused by drugs, infections, lack of oxygen and other medical reasons. But for patients, these visions are vivid and undeniably real.
Up to 80% of ICU patients have delirium, especially those who are sedated to help them tolerate time on a ventilator. These patients are often given a cocktail of psychotropic agents (drugs that affect their mental state) to promote rest, comfort, sleep, and safety, but also cause memory loss, confusion and delirium.
The delirium usually clears up before people go home, but the delusions, along with traumatic medical events, can haunt people for months or even years in flashbacks and nightmares.
These scary, intrusive memories are part of post-ICU syndrome (PICS). This affects the body – causing pain and severe respiratory, muscle or joint problems – as well as the mind. 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 a serious anxiety disorder, depression or post-traumatic stress disorder.
Unsurprisingly, PICS has profound implications for people’s quality of life, relationships and livelihoods. People forget to take important pills or can no longer drive or manage their finances. One third of IC survivors who have previously worked do not return to their jobs.
The psychological impact of severe Covid-19 does not differ qualitatively from other critical illnesses, but far more people are affected than usual. In our hospital, we had more than 100 people in the ICU at one time during this latest peak, compared to our normal 35.
And during Covid-19, ICU conditions are even more terrifying: no families at the bedside, staff in PPE that look like aliens, little time to talk or hold hands, overcrowded wards with few windows, and the constant buzz of monitors and beeping alarms. The delirium appears deeper than normal, taking weeks for patients to wake up to normalcy.
It is too early to know the long-term psychological impact, but initial data suggests that about 28% of people in the ICU with severe Covid-19 have PTSD, 31% have depression and 42% have anxiety for a month after the hospital.
Of course, thousands of other people are recovering well and feel great gratitude that their lives have been saved. Many IC survivors consider it a second chance in life, an opportunity to grow. As I write this, an email has arrived from a former patient who is experimenting with art, decorating her flat and making new clothes from old. She adopted a song by Nina Simone 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 the ICU. He says, “The five days of delirium were the worst days of my life, except for one. ICU patients are terrified for their lives. If we can do something about it, we should do it. “
ICUs are trying to rise to the challenge. When I got into this field 10 years ago there were a handful of ICU psychologists in the UK. We have set up a network to defend the role, and today we are 80. We are crucial members of rehabilitation teams, in addition to physiotherapists, dietitians, speech and language therapists and others.
Rehab teams are taking over where doctors and nurses stop. They save human lives; we help them get back to the life they want to live. National guidelines say that rehabilitation should begin early in the ICU, continue during the hospital stay and beyond, and that all ICUs should have psychology staff. The IC psychologists help patients with delirium, panic, depression or nightmares when they wake up and learn to breathe and walk again.
About half of hospitals with ICUs have multidisciplinary follow-up clinics that visit patients after two to three months to assess physical and psychological recovery. Here they can discuss puzzling ICU experiences and fill gaps in memory and lost time. If problems are identified, we refer patients to medical services, rehabilitation centers or specialized psychological clinics.
Although progress has been made, 50% of hospitals do not provide an ICU follow-up. Many Covid patients hospitalized during the first wave have been stranded as community services have a hard time coping. Last week, our IC 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. Speaking little English, her teenage child tries to rush services for her. We’ve reached out to providers to give her the help she needs, but how many others are in this dire situation?
For some, a lifeline can be thrown by post-ICU support groups run by hospitals or the charity ICU Steps for Patients. At our group’s first online meeting, people said they were struggling. A man, previously a fit athlete, is still partially bedridden and on oxygen, with lung scarring, a year after contracting Covid-19. A young woman is faced with many complications and operations. Since the start of the pandemic, several people have not left home for fear of going back to the ICU. Some still struggle to distinguish reality from ICU nightmares.
All of them generously shared stories and gave understanding and encouragement to others. They later told us that the reunion was emotional and painful, but a critical step in their recovery from intensive care. To anyone reading this 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 Intensive Care Psychologist 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