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...
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 patients, and those close to them, can change dramatically in an instant. While ICUs are the sites of great successes of modern-day medicine; they can also be places of significant loss.
On this page, you can read personal accounts of:
- Becoming aware of their critical situation
- Conversations about ‘ceilings of treatment’
- Emotions after witnessing other patients’ deaths
Please be aware that what people share on this page may be upsetting to hear and read.
Becoming aware of the critical nature of the situation
Family and friends are faced with great uncertainty when they have a loved one in intensive care (see also ‘Family and Friends’ ICU experiences/Uncertainty’). The Covid-19 (Covid) pandemic amplified some aspects of these experiences. The visiting restrictions kept loved ones physically separated, unable to be at their relative’s side, unless they were hospital staff or invited to the ICU for end-of-life visits.
For patients ICU was a frightening and isolated environment. Emma said: “ICU felt very intense, very intense, and the ward felt really… let’s breathe… I felt like I could breathe better. …Where in ICU I felt really like ‘anxiousy’, …as soon as I got into that ward… I just felt really scared and very lonely. But I just felt like I could be scared, whereas up in ICU I was too scared to be scared, whereas I could be scared down there, and I could sit there and cry.”
George was afraid that something would happen to the machines his life depended on.
When family members were unable to be in hospital, updates from doctors and nurses were delivered by phone (see also ‘Staying in touch during the visitor ban’, ‘Communication between clinical staff and family members’ and ‘A Doctor Speaks‘). This was a clear change from standard ICU practice, when clinicians would always try to speak to family members face-to-face which would allow a relationship and a sense of trust to be established.
When family members are allowed into the ICU, they can support by the bedside and hear updates directly from staff. During the Covid-19 visitor ban, all of this fell away. Unable to see signs of changes themselves, some family members described how they paid particular attention to what clinicians did and did not say on the phone, picking up on signs of progress or their absence.
Paula noticed that doctors never said that Victor was “stable”. At the same time, he was not ‘unwell enough’ to warrant an end-of-life visit.
Breaking bad news now had to be done over the phone. The clinicians who called family members had mostly never met in person before; this was a source of distress for family members and staff alike. Many recounted that they or their partner or other family members had received a phone call from a doctor to tell them their loved ones may not survive.
Ann’s husband came to ICU for three end-of-life visits when her chances of survival were slim.
News that a loved one may not survive was incredibly difficult to hear. It stirred up a lot of emotions and questions on whether and how best to tell others. When Kate learnt her husband might need to be intubated (a breathing tube put down the patient’s throat) – an intervention he may or may not wake up from – she went through what she described as ‘anticipatory grief’ (a term for grief that can be felt before, rather than following death of a loved one*). She found herself trying to protect their children from unnecessary worry.
Kate felt ‘anticipatory grief’ when she learned that her husband may need to be intubated.
Many did not survive their time in ICU. If clinical teams anticipated that someone was not going to survive, they invited family members to come to hospital to say goodbye (see ‘End of life visits’). For many, this was the first time they had seen their loved one since they went to hospital. For some, this was the last time they saw their loved one alive.
Some patients, however, went on to turn a corner. Most of them only realised how critically ill they had been after they came out of hospital. This was also when they started to come to terms with surviving when so many others had not (known as ‘survivor guilt’), and what their critical illness with Covid had meant for their family members and friends (see also ‘Coming to terms with long-term effects’).
Neil talked through feelings of survivor guilt in his support group. He advised never to feel guilty for surviving.
Conversations about the limits to interventions and treatments
ICUs provide the highest level of care that can be offered to someone. Survival can be uncertain. Not all treatments are appropriate for every patient, or only appropriate up to a certain point; in some cases, treatments can do more harm than good.
When someone deteriorates significantly or rapidly, clinicians tried to speak to the patient and family members about possible treatments as well as about when these may be stopped. Doctors may mention putting in place a ‘ceiling of treatment’ or ‘ceiling of care’ – describing the highest level of intervention deemed appropriate by the clinical team, aligned with patient and family wishes and values*2. If this point is reached the focus will switch to palliative care, no longer aimed at recovery but concerned with making a patient comfortable and free from pain.
Importantly, not all patients with a ceiling of care in place will die, some may well recover. Some people we spoke to had had one or more conversations with clinicians in which a ‘ceiling of care’ was mentioned, but fortunately never reached this point.
Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.
Some mentioned that ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR, DNAR or DNR) decisions were made by their clinical teams at a time when they were very poorly. DNACPR means that if somebody’s heart or stops, or they stop breathing, their clinical team will not attempt to restart it. This is not meant to affect other care. Clinicians will continue to do everything else to keep patients alive.
Patients can refuse cardiopulmonary resuscitation (CPR) as anybody has the right to refuse a medical treatment if they do not wish to receive it. The decision not to attempt CPR can also be a clinical treatment decision if doctors feel the attempt will not help somebody live longer, or is likely to do more harm than good, for example if someone has already suffered substantial organ damage from illness or is approaching the end of their life. If a doctor makes such a decision, they are required to give the patient the opportunity to grasp what a DNACPR is, to explain why they think it is appropriate, consult them on what they would want, and what a good life after resuscitation might look like. If somebody is unable to grasp this information, then doctors will speak to legal representatives or family about this*3. The decision is documented on a special form.
Some people who recovered from being critically ill with Covid only learned that this medical decision had been made after they had come home (see also ‘Coming to terms with what happened’). The DNACPR was withdrawn as soon as they were deemed strong enough to benefit from CPR.
Caroline did not receive a patient diary, but going through the hospital notes made her realise what medical decisions had been made. It made her realise just how ill she had been.
Discussions about a ‘ceiling of care’ or DNACPR can understandably be upsetting for family members, particularly if these are not clearly explained. Before Covid these conversations would have happened mostly in person, and often family members would have met the clinicians who delivered this news to them before this conversation. During the Covid pandemic these conversations more often than not happened over the telephone with unfamiliar clinicians, which affected how the information was given and understood. Sometimes family members spoke to multiple doctors to understand why a decision to limit interventions had been made.
Sadia understood why a ‘ceiling of care’ had been put in place for her father when it was explained to her by a second doctor.
Witnessing other people’s deaths
Due to the infectious nature of Covid-19, patients who still tested positive needed to be separated from other patients. This meant that Covid patients were in ICU and on the ward with other Covid patients, surrounded by people fighting the same disease for whom survival was also uncertain. For some, this translated into a camaraderie between them and other patients. But other people’s deterioration made them feel extremely anxious about their own chances of survival, especially when those patients had seemed to be relatively well or at least getting better.
Sometimes when staff drew the curtains around a bed, other conscious patients knew that this meant that things were critical for that person. Whilst they could not see, they could hear what was going on. This left them to imagine what was happening, which could cause lasting trauma. When they knew that the patient had died, this made them weigh up their own chances of survival.
Some people were diagnosed with post-traumatic stress disorder (PTSD) following these events and suffered from what is known as ‘survivor guilt’ – feelings of guilt, self-blame, anxiety, and helplessness associated with surviving an event whilst many others died.
Witnessing the death of another patient made Brian wonder where he was in the grand scheme of things.
Some family members and friends felt that witnessing other people’s deaths had been a contributing factor to their loved one’s demoralisation and physical decline. For a few, it was also a motivator. Whilst Carl found other people’s deterioration shocking and difficult to witness, it also made him more determined to get better.
Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.
*Marie Curie – What-is-anticipatory-grief
*2 Walzl, N., Jameson, J., Kinsella, J. et al. Ceilings of treatment: a qualitative study in the emergency department. BMC Emerg Med 19, 9 (2019).
*3 NHS (n.d.) Do not attempt cardiopulmonary resuscitation (DNACPR) decisions.
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...