When things get worse
Most people we spoke to were ill at home for several days, during which they began to feel worse and worse. When people sought help...
Here you can listen to people who have been admitted to an Intensive Care Unit (ICU) and family members talk about their experiences of going to hospital and the ICU admission. This page covers:
Several people we spoke to were relieved they were being taken to hospital, knowing that they would now be looked after. At the same time, having to go to hospital was frightening, especially because many were aware of the high mortality rates associated with severe Covid.
The progression of illness with Covid was often faltering. Some people like Wendy and Sadia’s father were admitted to hospital, then discharged, and then re-admitted.
In hospital, clinical staff used tests and scans to determine the severity of the patient’s condition.
Family members described how shocked they were at how seriously ill their loved one was. When talking about their father’s experience of admission to hospital with Covid, Alisha said she had initially thought he was not severely unwell and that he would come home soon. However, hospital tests revealed that he had a pneumonia in both of his lungs. Alisha and her mother Rita had not expected this.
Doctors and nurses use tests to develop a treatment plan and decide where in the hospital somebody may be best cared for, ranging from the general ward to the ICU.
The ICU provides acute services with high staffing resources, the use of specialist equipment and specialised treatments. Patients severely ill with Covid are admitted to the ICU if they required intensive treatment and monitoring, for instance if one or more organs are no longer working well, and if doing so is seen as appropriate for them (see also ‘Experiences of CPAP, mechanical ventilation and proning’).
A lot of the people we spoke to were already very ill when they arrived in hospital, and were transferred to ICU almost immediately. Others like Jenny, Brian and Alisha’s father Arjun were cared for on a general ward first before being transferred to ICU when their condition deteriorated. Alisha’s father deteriorated whilst on the ward, and was moved to ICU after 10 days. Brian was on the ward for five days during which he was very exhausted from his body not being able to absorb enough oxygen. He was then moved to the ICU.
People admitted to an ICU are critically ill; there is a chance that they may not survive (see also ‘Uncertain survival’).
Of the people we spoke to some did not remember the transfer to ICU. Others described their memories as a bit ‘hazy’. Memory loss is common for ICU patients, which can be explained by the medications and lack of oxygen, or by extreme stress and anxiety. Michael recounted: “For me it wasn’t the case of let’s say, oh, we’re going to send you to ICU, I just found myself in there.”
When they were transferred to an ICU, people we spoke to were often so unwell they found it difficult to concentrate or to stay awake. This meant that many could no longer communicate through the small screens and buttons on their phones. Because hospitals were closed to visitors for infection control, this meant that family members and friends no longer heard from them. Those at home had to rely on the ICU staff to keep them informed (see ‘Contact between family members and staff’).
Very occasionally, family members were on the ICU at the same time. Chris was in ICU alongside his grandfather Royston. He recounted: “I got into the hospital at two in the afternoon. At two in the morning I got told I was being taken to intensive care. I remember being wheeled to intensive care. I went in and all the nurses came to assist me, get me in the bed, strapped into the CPAP machine. One of the nurses then came over to me and said, ‘Chris, your granddad’s just seen you come in, he is two beds over there.’”
Sometimes it was clear to doctors and nurses that the oxygen support they were giving their patients, such as the CPAP (Continuous Positive Air Pressure) mask (see ‘Experiences of CPAP, mechanical ventilation and proning’), was not making a difference. Michael first received oxygen on the ward, and was then offered CPAP: “Initially they’d given me oxygen, which wasn’t working, so I was offered the CPAP, and that also didn’t work. So, I can vaguely remember the doctor coming to me and saying, “Michael, this isn’t working.”
Mechanical ventilation is a form of life support. It is not appropriate for all patients.
If a person is unable to breathe or take in enough oxygen on their own, they are intubated (a breathing tube is put down the patient’s throat). The mechanical ventilator, also called ventilator or respirator, takes over the breathing. Being on a ventilator does not treat the underlying condition causing severe breathlessness, but it gives other treatments time to work, or to allows the body to recover on its own. Doctors will speak to a patient and their family members (if possible) if they feel mechanical ventilation is needed. They discuss what treatment or intervention they will attempt, and what this can mean in terms of survival chances (see also ‘Uncertain survival’). Paul, like many other patients, experienced delirium in ICU, which meant that he could not always determine what had really happened (see also ‘Patient experiences of mechanical ventilation’ (in ‘Experiences of Infection control measures in ICU’). He was unsure whether he had had a conversation about ventilation, or whether he had dreamt it: “I have a vague recollection of asking the consultant if I was going to die, and he paused and he suggested to me that they were going to do everything they can to keep me alive. That’s all I can remember really. It was very vague. At some points I can’t remember if I even dreamt that. It might have been a dream. I’m just unsure.”
As survival is uncertain, the moments before intubation can be extremely frightening (see also ‘Uncertain survival’). When Carl’s doctors told him he needed ventilation as his breathing got worse, he knew many people did not survive. His doctors told him things were looking good: “I kind of was told that there was a high percentage of death with it. I can’t remember how it was put to me but they said it was like 25 per cent or something like that chance, but because I was young and no underlying problems things were looking really good for me.” Paula remembered being deeply aware that ventilation meant she may not wake up.
Some like Paul and Emma were well enough to speak to their family members themselves before they were intubated and called or texted them – often to say goodbye, just in case. Emma said: “I remember Face Timing my husband and kids to say to them… that I was being ventilated, you know, and you do say your goodbyes, because obviously you don’t know what the outcome is from that.” In other cases, family members received a phone call from the clinical team to inform them ventilation was necessary.
Dana and Elizabeth and others did not get a call beforehand, because intubation had to happen quickly, leaving no time for a phone call or text. Doctors called family members afterwards to let them know that the procedure had been done. While this was understandable from a clinical point of view as these patients needed rapid intervention, it was hard for family members at home to be without news, and to learn after the fact that a major intervention had been necessary.
Hearing their loved one needed to be ventilated was difficult for family members, particularly when they were themselves shielding, in isolation or under lockdown (see also ‘Contact between family members and clinical staff’). In such instances, people outside of their household or bubble could not be physically with them to support them through this distressing time.
For those who lost a loved one to Covid in the ICU, not having been able to speak to them before ventilation added to their loss. Elizabeth did not speak to her husband before he was ventilated. This meant that the last time they had spoken had been when he was taken to hospital in the ambulance. She said: “I understood the reason why, but it’s so hard that I never spoke to him when, after the day he went into hospital that morning. I can’t think what did I say when he left. Maybe, hopefully I can pick you up. We had a couple of texts, he managed to text us, but other than that yeah, it’s just so, so hard.”
Most people we spoke to were ill at home for several days, during which they began to feel worse and worse. When people sought help...
Here you can listen to people talk about: How treating Covid19 patients in ICU was from a clinical perspective Experiences of wearing the CPAP (Continuous...