Uncertain survival
The Intensive Care Unit (ICU) is a place of uncertainty, where life-saving treatment is provided to those who are critically ill. The lives of ICU...
Sources of support in Intensive Care
Sources of support while in intensive care took various forms. This page covers:
- Communication with family members
- Contact with other patients
- Support from friends and strangers
- Support from faith and religion
Communication with family members at home
Contact with those at home was a great source of support for people in ICU (Intensive Care Unit) with Covid, although physically, communication was difficult. ICU patients are receiving life-saving treatments, connected to monitors and machines, may be wearing masks or intubated (a breathing tube down the patient’s throat) and are often sedated for periods. A critically ill patient who is ventilated with a tracheostomy (an opening surgically created through the neck into the trachea (windpipe)) is unable to talk and may be offered paper or a white board to write on, or an app designed for this purpose.
After waking up from ventilation, Johnny could initially not speak. He communicated through writing.
Covid patients on ICUs were not allowed visitors due to infection restrictions, unless they were thought to be at the end-life (see ‘End of life visits’). The absence of family members was unusual, difficult for staff and very isolating for patients (see ‘Experiences of the visitor ban’ in ‘Experiences of infection control measures’). Facilitating communication was therefore more important than ever. Hospitals often introduced digital means of communication – videoconferencing via tablets – and staff helped patients to use their own phones to communicate with their family and friends. Patients were often only able to nod, blink, or wave. Paul remembered: “Every time my wife phoned, I had to either nod my head, or my sister phoned I’d nod my head and wave, because the doctors really wanted to rest me and I was absolutely shattered after a phone call and writing on the whiteboard.” Although communication was challenging, these calls were a vital lifeline for the patients and their loved ones. They helped keep family members informed (see ‘Staying in touch during the visior ban’) helped motivate patients, and, for some, helped their confusion or delirium (see also Experiences of infection control measures’).
Some people chose not to speak to family members. Wendy, who was in ICU for a few days, felt her family would be too worried seeing her in critical care, and waited until she was back on the ward. Staff often encouraged patients to call their family members if they were hesitant to do so. Paula recalled that Victor initially did not want to call his family, but once he started, he found it really helpful. He then went on to call many other family members and friends. Paula also speaks about how difficult it was for her and their son to see Victor on the videocall (read more about experiences of seeing a relative in ICU for the first time).
Emma is particularly grateful to the nurse who encouraged her to call her family.
Videoconferencing made an important difference to people receiving ICU treatment. This is most apparent when listening to those who did not have access to it. Carl was admitted to the ICU early on in the pandemic and described losing track of time; his admission felt “like years” and he felt “confused all the time, just didn’t really know anything”. Like many we spoke to, communication with his family helped Carl connect to normal life – the sights and sounds of home – which he felt so isolated from. Calling home helped him to temporarily regain a sense of orientation: “It was just like I’d jumped into another world because suddenly everything seemed to be sorting out.” Carl felt that had he been supported to call home earlier after waking up from ventilation, this “would have made a massive difference” to his sense of confusion and helped his recovery.
To Carl, speaking to his family temporarily made things feel normal again, and helped differentiate between delusions and what had really happened.
For most of those we interviewed, it took time to have the energy and emotional strength to be in touch with their family and friends by themselves. Using a phone was often too complicated for someone who had recently been taken off ventilation and was fatigued and, in some case, immobile. Emma explains: “It takes a lot to talk to people when you first come out, because it’s effort, and you don’t have the strength, so it’s really…I wanted to talk to my mum and dad and my husband and the kids, so that was the only people until I went onto a ward, and I phoned like one other person. … Anyone else, I was too knackered to do it.”
In a few cases, patients had family members who also were admitted to hospital, which is unsurprising considering that Covid is a contagious disease. However, being in hospital at the same time did not mean family members were guaranteed to see each other. Shireen was on a general ward whilst her husband Yacoob was in intensive care. They barely had contact although just before her discharge, staff took her to see him on the ICU.
Shireen and Yacoob were both admitted to hospital. Whilst she was on a ward, he was in ICU.
A few were in intensive care at the same time as a relative. Chris was admitted to the same ICU as his grandfather; they were positioned so they could see one another which he appreciated: “To see my granddad was nice… it’s nice in a way to know that I wasn’t totally alone in it.”
Contact with other patients
An ICU unit has multiple beds that are well spaced out. Patients are often attached to multiple machines, with their constant hums and beeps, and may or may not be conscious. Most Covid patients were either ventilated or wearing masks or hoods to administer oxygen. Some patients would have oxygen administered nasally under pressure. (See also ‘Experiences of CPAP, Mechanical ventilation and proning’).
Having conversations with other patients was very difficult. Peter recalled that the CPAP (Continuous Positive Air Pressure) mask made it difficult to speak: “it’s hard for [other patients] to hear you when you’ve got a CPAP mask on and you’re struggling to get words out … it was literally just the fact that you’ve got a mask on that’s forcing air into your mouth. And when you’re breathless you obviously find it a little bit harder to talk”. However, if they could, some found speaking to other patients helpful; it made the technical environment feel ‘more human’. Chris, who was ventilated through a CPAP mask, said: “because I was on a lighter mask, I was even able to talk to people. So, to even just be able to talk to another human for even just ten minutes a day was helpful.”
One of the unusual features of being critically ill with Covid during the pandemic was that almost everyone on the ICU was ill with the same infection. Patients we spoke to were acutely aware of this. It was difficult not to compare their trajectory to those of others around them (see also ‘Uncertain survival-witnessing other patients’ deaths’); this could be a source of comradery, but equally could be a source of distress. Some found it demoralising to see people around them struggling with the same infection, aware that these patients had been in the ICU for a long time and were very unwell. Carl found other people’s deterioration shocking and difficult to witness, but it also made him more determined to get better.
Carl felt stronger about wanting to survive when he saw other patients deteriorate.
Victor learned that one woman had been on his ICU for five months, something he feared would be a possibility for him too: “There was one lady that was in there five months. I didn’t need to be told that because – this was after about four or five weeks – one of the doctors said oh, we’ve discharged a lady; she’s been in here five months. So straight away, psychologically, I felt that was the potential situation with me. The fact that they told me a fellow patient had been in here five months, that told me that potentially I could be in there five months. That’s how I took it. They didn’t have to tell me that. If I was less positive, that could have sent me in a different direction.”
Support from staff, friends and strangers
Many people received an overwhelming number of messages on their phone from friends and family when they were in ICU – mostly via text, voice message and messages via social media. Because people were tired, on medication or confused, reading and responding to these messages was often exhausting and took many hours. However, having that support from friends and family outside the ICU helped them through a very difficult time.
Emma had too many messages to respond to, so she posted a general message on social media for all to read. She had the messages made into a book.
Support also took unexpected forms. The COVID-19 pandemic unfolded in public view and support for those who were critically ill came from all corners of society. Paul received support messages from celebrities, arranged by his family. For Laurence, knowing there was support outside had a positive effect on his recovery.
That players of Paul’s favourite football team sent him messages of support contributed to his recovery. He hoped to sell one of the Hibs strips to raise some money for the NHS.
Staff members were often an important source of support, particularly in the absence of visitors. Patients described the conversations, morale boosters and small gestures that had made a big impact. These ranged from bringing in sweets they knew particular patients liked to singing songs for somebody whose birthday it was whilst they were in ICU (see for more about staff-patient relationships, ‘Support from staff’).
Support from faith and religion
For George, Michael, John and others, faith was an important source of support. Some prayed on the ward for their improvement. Others had religious staff members praying for them – a pastor or an imam would come to ICU or meet them via an online conferencing platform. Some nurses prayed for patients as well.
Royston and Caroline told us that they had prayer groups in various places around the world praying for them whilst they were critically unwell. Jenny told us she had her church pray for her “every single night for the eight weeks” when she was in hospital. Knowing she had support of other people helped her. “And the pastor was allowed to come into ICU, so he came in twice and then I had a Zoom meeting with him another time.”
George started praying when he heard that he may not survive.
Wendy could feel that other people thought about them and wondered if this had contributed to their improvement.
Wendy could feel the love that was sent to her through prayers.
Knowing that they had support of other people helped people. Caroline felt she was able to turn the corner because others prayed for her.
Caroline believed that people praying for her throughout the night when her condition was most critical enabled her to turn the corner.
Support from staff
In ICU (Intensive Care Unit) people are cared for by doctors and nurses who provide highly specialised care 24 hours a day. In UK ICUs,...