Every patient experiences intensive care in a unique and personal way. Their experience depends on the illness, the treatments provided, the length of stay and their personal history. However, understanding certain common features can help family members better appreciate what the patient may be going through and interact with them more easily.
A sedated, unconscious and/or confused ICU patient may be in a state of consciousness that is extremely difficult to understand for anyone who has not experienced it. They may be able to hear and, if their eyes are open, see what is happening around them, but they do not process the information normally. It can be compared to the way a sound or a word heard while sleeping may become part of an ongoing dream.
This mixture of real events and dreams can leave memories afterwards that are often strange and difficult for the patient to understand, yet may feel more real than reality itself. As a family member, you can write an ICU diary for the patient. You can record what you talk about during visits, describe any reactions you notice and explain their surroundings—what they can see from the bed and what they may hear or smell. This can greatly help them distinguish dreams from reality when they wake up.
Many patients describe feeling as though they were on a boat, possibly because of the movement of air through the ventilator tubing or the air mattress inflating and deflating to prevent pressure sores. Others have more frightening memories of being persecuted. These memories may sometimes need to be worked through with a psychologist so that the patient can regain peace of mind after intensive care.
To better understand ICU dreams, you can join the Second Life by 101 network, which brings together former patients, family members and healthcare professionals and shares personal intensive care stories every week.
Katia’s story The patient’s world
Unlike the way it is often shown in films, waking up is not a single brief moment but a gradual process. Depending on the sedative medicines used, how long they were administered and how quickly kidney function recovers to clear them from the body, waking may take anything from a few minutes to several days.
Most of the time, the patient will still be intubated when sedation is stopped, because they need to be fully awake enough to protect the junction between the airways leading to the lungs and the digestive tract leading to the stomach. This is therefore often a relatively uncomfortable period: the patient cannot communicate easily, may feel lost because they do not remember what happened to them and may be distressed by the breathing tube.
Memory may take some time to recover, and the patient’s circadian rhythm, or day–night cycle, is often disrupted. Information often needs to be repeated many times as the patient wakes up. They may need frequent reorientation in time and place: being told the date, day and time, and reminded where they are and why they are in intensive care. Writing the date and the names of the day’s healthcare team on the room’s whiteboard can gradually help them regain their bearings.
ICU delirium is a cognitive state in which the patient is awake but experiences hallucinations and delusions. It may have many causes, including certain illnesses, treatments and sleep deprivation, and is more common with increasing age. It can be particularly difficult for family members, who may be unsettled by changes in the patient’s personality or by unexpected and unusual reactions. ICU delirium is temporary. It may last for a few days or even several weeks, but it resolves once the underlying causes have been identified and removed or treated.
Although many critically ill patients spend a shorter or longer period under sedation or in a coma, some remain conscious and alert for much of their stay. However, even without an altered level of consciousness, ICU patients may experience their stay in a state of mind that is difficult to understand unless you have been through it yourself. Loneliness, isolation in the intensive care room, losing track of time as one day follows another and they all seem alike, the sense that time is stretching endlessly, and becoming fixated on sensations such as thirst, fatigue, pain or itching can all feel overwhelming and distort the patient’s perception of reality. Family members cannot fully know what the patient is experiencing, just as the patient cannot fully know what their family is going through.
Katia’s storyThe patient’s world
An intensive care stay is a difficult experience. Many necessary procedures and treatments can be uncomfortable, worrying or even painful, despite the many precautions taken by healthcare professionals and the pain relief provided.
Other procedures may look very alarming but are not always as difficult to experience as they appear. It is difficult to predict how painful a technical procedure will be, as pain is individual and varies from one patient to another. This is why it is important to assess each patient’s own experience whenever possible. Your knowledge of the patient is valuable in helping the healthcare team make this assessment more accurately.
Personal care and rehabilitation can be particularly difficult for patients. Sitting out in a chair, for example, can relieve back pain caused by prolonged bed rest and support breathing, bowel function and reorientation in time and place. However, it requires considerable effort from someone who has spent days or weeks in bed, and using the muscles again can quickly become painful.
However difficult this stage may seem, it is necessary to go through it and gradually increase the duration of these efforts each day so that the patient can eventually leave intensive care. Little by little, patients regain a sense of ownership of their body, recover some control over their movements and, with support from healthcare professionals and family members, slowly rebuild their independence. It is important to encourage them, recognise their efforts, congratulate them and remind them of their goals—such as returning home or completing a project that matters to them—without underestimating the enormous effort required for even the smallest movement, or simply to remain seated for a few hours. During these mobilisation sessions, one role for family members may be to distract the patient from pain and discomfort by talking about pleasant things or helping them escape through a subject they enjoy. This can help them tolerate the uncomfortable position for a little longer each day and support their rehabilitation.