Experiences of CPAP, mechanical ventilation and proning

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 Positive Air Pressure) mask
  • Decisions about mechanical ventilation
  • Patient experiences of mechanical ventilation
  • Family members’ experiences around mechanical ventilation
  • Moving between respiratory support systems
  • Physiotherapy and proning

Please be aware that what people share on this page may be upsetting to hear and read.

Treating Covid19 patients in ICU

Treatment for Covid patients initially took the form of life-support and was later complemented with drugs as and when their efficacy had been proven, and they were approved for use. People who were cared for in ICU during the pandemic received care under circumstances that were both similar but also radically different from ICU care as it had been before the pandemic.

How was treating Covid19 patients in ICU different from treating ICU patients before the pandemic?

What happens to Covid19 patients in intensive care?

If a Covid patient is admitted to ICU now today, what does that look like?

Experiences with CPAP (Continuous Positive Air Pressure)

When patients were transferred to the ICU (Intensive Care Unit) it was sometimes difficult for family members at home to understand what treatments, like CPAP their loved ones were receiving. Clinicians were in touch with family members to explain the decisions they were making (see also ‘Contact between family members and clinical staff’).

Deborah initially did not understand what CPAP meant but grasped that it meant that her husband did not need mechanical ventilation, the thought of which scared her.

How well people tolerate CPAP varies. While some of those we interviewed experienced few difficulties being on CPAP, others described it as “awful”, “a nightmare”, “horrendous”, “claustrophobic” and “painful”. The mask needs to be attached tightly to ensure a good seal around the face. Many of those we talked to experienced this as uncomfortable and hard to tolerate. Doctors and nurses were aware and sympathetic about these difficulties, but emphasised the necessity of the mask for their breathing and chances of recovery. Melanie, an intensive care nurse, visited her friend Rhod who was on CPAP in ICU. A pressure ulcer had developed on his nose just under the mask, so she asked the tissue viability team to help dress it and relieve the pain.

Brian found the CPAP mask painful and claustrophobic. He kept his CPAP mask as a memory.

Of those we interviewed many struggled with the CPAP mask, but were conscious of how important it was, and tried to find ways to tolerate it. Some spoke to themselves or focused their thoughts on getting home. Roger tried to surrender to it: “I realised quite quickly that you can’t fight it. You’ve just got to let it do the work for you. Because you’re … almost panicking. Oh, this is horrible, yeah, I can’t get my breath… You relax and let that carry on.”

In contrast to patients who are mechanically ventilated, andare often sedated, patients on CPAP are mostly awake and aware of what was happening around them. Neil said: “When you get the priest come around on a Friday to give the last rites you know that it’s pretty bad. You see, I had the misfortune of seeing a couple of people pass away, which is hard, especially after you’ve been with them for a couple of weeks.”

Zoe similarly recalls witnessing the distress of staff and other patients around her. Whenever another patient died, staff members would draw the curtains around their bed, but Zoe could still hear what was going on. This was traumatising to witness (see also ‘Uncertain survival-Witnessing other patients’ deaths’ and ‘Coming to terms with what happened’). Melanie’s friend Rhod also found it incredibly distressing to witness what was happening in his immediate surroundings, but there was no way for him to get away from it.

Zoe was moved from mechanical ventilation onto CPAP. Being on CPAP meant that she was aware of her surroundings, including the deaths of other patients.

Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.

Decisions about mechanical ventilation

Mechanical ventilation is a more invasive form of life support and requires a patient be intubated (a breathing tube put down the patient’s throat). Some people we spoke to remembered being asked whether they agreed to being intubated. Having heard much about ventilation and associated death rates on the news, the idea of being ventilated could be scary. Some like Andrew and Gerry remember agreeing to intubation when their doctors felt it was necessary, although they did not always feel like they had a choice.

When the oxygen support could no longer be increased on the CPAP machine, Andrew’s doctors explained why they felt it would be necessary to mechanically ventilate him.

If there was time, people could delay ventilation to arrange some important things first. Peter wrote down all his passwords to give his wife access to his bank accounts, and what things he wanted to be given to specific people in case he would not survive.

Chris did not agree to preventative mechanical ventilation, but agreed to it in case of an emergency. Whilst mechanical ventilation could save the lives of some, others did not survive despite being on full life-support (see ‘End of life visits’). Some, like Emma, witnessed patients dying after they had not agreed to be ventilated, which she found highly distressing (see also ‘Uncertain survival’).

Chris argued against mechanical ventilation as a preventive measure but agreed to it in case of an emergency.

Although ventilation was feared, family members mostly understood it was needed. One bereaved relative told us their loved one had been intubated after three weeks on CPAP and nasal oxygen, and wondered if he had perhaps had a better chance of survival had he been intubated earlier. He would have perhaps not have been as exhausted as he was before he passed away.

Patient experiences of mechanical ventilation

ICU patients who were sedated to tolerate mechanical ventilation generally did not remember much from their coma. However, many had dreams and hallucinations. It is possible that the experiences of delirium were more prevalent and intense for Covid ICU patients than they are for ICU patients more generally. Admissions were on average longer than for other ICU patients, and were mechanically ventilated for prolonged periods. Covid patients required medications for deeper sedation to enable proning and ‘ventilator synchrony’ (a better match between their breathing pattern and the ventilator) and were on these medications for longer periods. The restriction on hospital visits for infection control meant that no familiar voices could reorient patients back from their hallucinations.

Nahied described how she felt estranged from the world whilst she was in coma, and a sense of anxiety and confusion when she woke up: “At one point, I just forgot what the world looked like, ‘cause I was in a coma, and at one point I really forgot what a road or where my house is… it’s so scary… when I woke up, I had all tubes around me. I didn’t understand what was going on with me.”

Waking up from ventilation can be a distressing and disorientating experience. For Covid patients these experiences were possibly enhanced due the absence of family members.

Paula felt strongly that a family member should have been present when she was woken up from her coma.

Some, like Victor, felt waking up from ventilation was a positive step towards recovery.

Victor experienced the removal of every wire and tube as a positive step in his recovery.

Family members’ and friends’ experiences around mechanical ventilation

When possible, doctors gave patients time to speak to their loved ones before intubating them. For most people this conversation was a cherished opportunity, but it was often fraught with many uncertainties (see also ‘Uncertain survival’). Sometimes, it turned out to be the last conversation people had with one another.

Alisha spoke to her father before he was intubated, which later turned out to be the last time they spoke.

Some family members like Dana and Elizabeth did not get the chance to speak to their loved one before they were ventilated.

Early in the pandemic, in March 2020, Dana had not heard from the hospital for several days, when she received a call from a doctor to tell her her husband had been intubated.

Dana received a call from a doctor who told her that her husband had been mechanically ventilated.

If their loved one did not survive, not having spoken to them before they were ventilated gained extra significance and added to their loss. Elizabeth’s husband Alexander died on life support: “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” (see also ‘End of life visits’).

Family members found it hard not to be able to visit when their loved ones were so very vulnerable. Some felt helplessness and even jealous of staff who could be at the bedside.

Stephanie felt entirely helpless, and jealous of staff who could be with her husband whilst he was ventilated.

We spoke to a nurse who worked in the ICU where her friend was ill, which meant that she could be with him when he was intubated. For staff, these were particularly challenging moments.

Melanie was present when Rhod was intubated. She is grateful to her colleagues in ICU for the way they handled the situation.

Moving between support systems

Patients often move between levels of respiratory support. If the nasal cannula or CPAP mask does not do enough to increase or maintain a patient’s oxygen levels, and other interventions, including medication and body positioning, have been tried, doctors may offer patients other, more invasive, respiratory support.

Paula first received oxygen through a nasal cannula, a device that consists of a flexible tube with two open prongs that sit in the nostrils, used to deliver supplementary oxygen. She was then moved onto CPAP. When this did not increase her oxygen levels sufficiently, she was intubated. Her intubation was a particularly difficult one. Laszlo was first moved onto mechanical ventilation and later onto extracorporeal life support (ECMO).

Paula’s saturation levels could not be increased with oxygen supplied through her nose (nasal cannula) or a CPAP mask. She was then intubated and ventilated.

Laszlo was moved from CPAP onto a mechanical ventilator and then onto Extra Corporeal Membrane Oxygenation (ECMO).

.

Patients can also be given a CPAP mask after coming off ventilation.

Proning and phsyiotherapy

Physiotherapists working in ICUs may reposition patients, or assist them in doing so themselves, to help their breathing. They also help them cough with the aim of clearing their airways. If physiotherapy can be initiated early and makes up a part of the rehabilitation, the return home is likely to be easier (see also Physiotherapy in ICU/Patients’ experiences module).

Covid patients on CPAP and mechanical ventilation were also often ‘proned’, that is turned to lie on their front, to help ease their breathing. Like CPAP, proning can be helpful for patients, but may be difficult to tolerate too. One man felt that he had to change positions too frequently, and that proning was not helping his breathing. Others clearly benefited from it.

With the help of the physiotherapist, Chris tried to help his breathing by being in various positions whilst on CPAP.

Pete and Wendy continued to prone themselves after they left the hospital.

Pete felt that it was important to stay on his front as long as he could. He continued proning after leaving hospital.

Wendy also frequently changed her positions after she left hospital. She explained: “Before I went in, I’d heard about that that was a good idea, and I’d seen them do it … on the ICU. So, when I got down on the ward just from a couple of…not for very long, half an hour. But when I got home, I made sure I did it and I think that that might’ve helped a bit as well.”

Admission to the ward and ICU

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...

Experiences of Infection control measures

Hygiene and sterility are always important on an ICU (Intensive Care Unit) to keep patients, staff and visitors safe. Staff routinely work with rigorous infection...