On Thursday 8th March I spoke at The Welsh Intensive Care Society conference. Although my paper was about my research into NDEs, part of my paper discussed the hallucinations that patients reported. This aspect sparked a lot of discussion and it is apparent that many healthcare workers in the audience were aware of many patients who continued to have very vivid and disturbing hallucinations after being discharged home. So I have decided to write a post specifically about hallucinations as opposed to NDEs.
Hallucinations are very common in patients who have been in intensive care. I nursed thousands of patients in intensive care, in the 17 years that I worked there, who reported such hallucinations. My colleagues knew of my interest in hallucinations and death and dying so I was predominantly allocated patients who were dying or hallucinating.
When I undertook my research, during the first year of data collection I interviewed every patient who survived their admission to ITU. Out of this sample only two people reported a NDE yet I came across 12 patients who had clearly been hallucinating. These patients were entered into the study so that I could compare the hallucinations with the NDE. By the end of the 5 years data collection I came across 15 patients who had a NDE. I then compared the hallucination group with the NDE group.
The full interviews with the patients who hallucinated and those who reported a NDE are in my first book The Near-Death Experiences of Hospitalized Intensive Care Patients: A Five Year Clinical Study published by The Edwin Mellen Press in 2008.
There were differences between the hallucinating patients and the NDE group. The NDE followed a specific pattern whereas the hallucinations were random and bizarre often with no logical sequence of events. On follow-up after a few months the NDE remained vivid and the patients remained adamant that it was ‘realer than real’ whereas those who had been hallucinating could rationalise that they had been hallucinating. Also Patient 10 had a very deep NDE but had also experienced hallucinations at a different time. He stated that there was a difference between the hallucinations and the NDE and the NDE remains as vivid now as it did when it occurred over 10 years ago whereas the hallucinations have faded and he can’t recall them in as much detail.
When I investigated the hallucination group it became apparent that the patients were predominantly reporting experiences which were actually occurring at the time they were recovering and their sedation had been discontinued. They could hear what was going on around them, they could feel what was being done to them, they could feel the equipment attached to their body and could partially see things in their line of vision as they were regaining consciousness.
For example one patient thought she was on the Swansea to Cork ferry. All patients in intensive care are on pressure relieving air mattresses. If you lie on one it feels as though you are on a boat swaying from side to side – further to this when her sedation had been discontinued she was being cared for by a nurse with a thick Irish accent.
Even after sedation had been discontinued it appears that it remained in the patient’s body for some days especially if the patient had been in renal failure. The patient’s bizarre behaviour was also clearly observable by the nurses looking after them. Many patients tried to get out of bed or remove the tubes etc connected to their body; some even became aggressive towards the nurses. Many of the patients were later quite embarrassed about their behaviour.
However, it has also become apparent that some patients, especially those who are ventilated and sedated for a prolonged period of weeks and months, have intense hallucinations which can’t always be attributed to background noise etc. Some people report experiences that parallel post traumatic stress disorder (PTSD).
I frequently get contacted via my website by people who have had very vivid hallucinations that have a very disturbing effect on their lives and interrupt their sleep pattern. In some cases people are even afraid to go to sleep or close their eyes because they fear the hallucinations coming back and being re-experienced. One man was so disturbed by his stay in intensive care that the only way he could get any rest was to try to sleep on the sofa in his living room with all of the lights on and the white noise of the TV buzzing in the background.
This highlights the importance of providing good follow-up care for all intensive care patients who have been sedated and ventilated for a successive number of days. There are follow-up clinics in many intensive care units and there is usually a psychologist involved in extreme cases for patients who continue to experience vivid hallucinations.
In extreme cases, it would also be helpful for any patients who suffer with disturbing hallucinations after discharge from ITU, to return to the intensive care unit where they were a patient and speak to the nurses, doctors and physiotherapists who actually participated in their care. I did this with a patient in my study and it helped the patient immensely. I had actually looked after him while he was sedated and when I explained the various treatments that were given and showed him some of the equipment used he was able to make more sense of what he had been through. Due to the nature of their role, nurses usually spend most time at the patient’s bedside in intensive care and are a very useful resource when patients are trying to make sense of their experiences while in intensive care. Unfortunately, the reality of our current healthcare system with increased and often excessive workloads, nurses and other healthcare workers seldom, if ever, get the luxury of being able to spend time explaining these very important aspects with patients who have been discharged from intensive care. This has a double sided effect because the patient misses out on important support and the healthcare workers miss out on the opportunity to learn from these patients and use what they have learned to benefit future patients.
NICE recommends that when you have left the hospital:
“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.
If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.” (NICE CG83)
Below are some links which maybe helpful for people who are experiencing hallucinations after being a patient in intensive care:-