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:-
http://www.healthtalkonline.org/intensive_care/Intensive_care_Patients_experiences/Topic/1264
http://www.sciencedaily.com/releases/2006/09/060925083003.htm
http://www.healthtalkonline.org/intensive_care/Intensive_care_Patients_experiences/Topic/1369
Dr Penny Sartori 
I always enjoy reading your blog! Is the book you mentioned widely available?
Thank you Monica. The book is available from most libraries – it is very expensive to buy (£85!) so I’d try to borrow it from a library. I’ve written another book about NDEs which summarises the research I did (and will be much cheaper!) – I’m in the process of submitting to publishers at the moment.
Great post, Penny! My sweetheart being a hospice and home care nurse, I am familiar with how the hallucinatory phenomenon can follow a patient home from the hospital, just as the actual spiritual phenomenon may trouble a home care patient. These are crucially important considerations for the care of a recently discharged patient.
Your post, here, is a balm to me. You know from reading my book that I struggled for years in convincing my stubborn intellect that there is a vast difference between the NDE imaginal experience and dream and/or hallucinations. I still ain’t convinced yet in my heart I know.
Thank you for your insightful comment Ken. It’s always good to hear from people who have undergone these kinds of experiences.
Thank you for the post Dr. Sartori. What I find interesting is how NDE’s vary from one experience to the next. In several accounts I have read, I have often wondered if these were real NDE’s or possibly a dream or hallucination. For instance, some people have reported hearing clicking sounds or feeling sensations of heat they may associate with a frightening environment. You have to wonder if they are somewhere in and out of consciousness and are bringing elements of their surrounding environment into their experience, similar to those who are hallucinating.It seems to be such a grey area sometimes and with so many outlets to report these experiences, one must be discerning in their information source.
Thanks for your very important comment Dawn. I found it very hard to distinguish between NDEs and hallucinations in a few of the patients in my research. One man described very vivid aspects of a NDE but then it became quite confusional and uncharacteristic of a NDE. This seemed to coincide with a strong painkiller being administered. I erred on the side of caution and didn’t include it as a NDE in the end because the hallucinatory aspects out weighed the NDE aspects.
You’re right it is a grey area and I think in some instances elements of the surrounding environment do influence the subjective experience of the patients.
To me this highlights how important it is that more research is undertaken into all kinds of subjective experiences of patients. We have very little understanding of the mind. As a nurse I found it quite frustrating that not enough notice was taken of patient’s subjective experiences whether they had experienced hallucinations or NDEs. To simply reduce these experiences to the drugs administered – as I witnessed a few of my colleagues saying to the patients was of no help to the patients at all. They needed time to ask questions and for thorough explanations of what had happened to them during their stay in intensive care.
interesting post on halluncinations.
are there any cases of research where (such as the man you mentioned there) drifting from a possible nde experince (with medical records showing that there are ‘dead’) and shortly before hand or after having an actual halluncation?
also is there many degrees of hallucations? as i am a diabetic i sometimes feel when i go hypoclacemiac like my mind is not coherent with my body. it obviuously not a nde or a hallucation as such, but something related?
Hi Stuart, to be honest I’m not sure of any other cases of patients having hallucinations before or after their medical records showed that they were clinically dead. I’m sure a thorough scan of the published literature on this may come up with some similar cases but I’m not familiar with them at the moment. (The patient I mentioned in my study was not actually clinically dead – he was in Sample 1 of my research and had been admitted to intensive care following a big operation.)
You ask a very good question about degrees of hallucinations. What you mentioned about not feeling coherent with your body if you become hypoglycaemic is what you feel as you lose consciousness. You have some awareness to a point but when you lose consciousness that awareness stops.
There are varying degrees of hallucinations that I have come across. Some people reported feeling disconnected from their bodies but still in them – i.e. they did not feel as if they were having an out of body experience (OBE) but were separate from their body. It was almost as if their body was behaving in ways that they were not in control of but still had a degree of awareness.
Some people were obviously having very vivid hallucinations and were quite uncompliant with treatment yet when they eventually regained full consciousness they had no recollection of anything at all. Quite a few patients reported feelings of paranoia and thought that the medical and nursing staff were conspiring against them.
Hi Penny
Yes I thing the way you put it sums up my mind/body disconnection. Still in it but not controlling.
Very intereseting to note the difference between hallucationey and nde experinces too
Thank you Penny for a great blog. Im curious of the patient who’s account was both hallucinatory and nde like. Could you describe his or her account as intermingled or distinct in time between hallucinatory and nde like? I’m trying to understand if the patient had a clearly nde like account which then later became hallucinatory OR hallucinatory experience which then became an nde experience. Or we’re the two accounts intermingled in some way?
HI Tony, yes it was a very intriguing case to investigate. The patient had been admitted to intensive care following planned surgery and was still unconscious on arrival. (This is all from my memory of something I investigated over 10 years ago, I’d have to go back to my notes to be 100% accurate).
He reported finding himself in a long corridor which had hundreds of doors leading off. He wasn’t allowed to enter some of the doors but he was able to enter through one and found himself in like a huge library that contained ‘all knowledge on every subject’. There were other people in this library, some were in wheel chairs, some were walking around. The patient described kind of ‘hearing’ a voice showing him around and introducing him to the various sections of knowledge in the library. He was very peaceful in this state. To me this was very similar to some NDEs I’d read about in the literature and the long corridor seemed to be analagous to the tunnel.
The next thing he reported was hearing ‘ding ding’ noises around him, being in a lot of pain, seeing someone who was really a red Indian and thinking he was in a corner shop and that his funeral was taking place in the back room of the corner shop.
When I investigated this in his medical notes and discussed with the nurse looking after him at the time I could see that when he regained consciousness he was in a lot of pain. He was given a strong pain killer and then became very confused. He tried to get out of bed, he was aggressive towards the nurses and was shouting out loudly and was disruptive to the other patients. His family were visiting at the time and got upset by his behaviour and got a bit tearful then went home. The ding ding noises he could hear was the alarm on his monitor. He was shouting at the nurse looking after him because he thought she was a red Indian. He was trying to get away from her and attempted to pull all of the heart monitor leads off him.
It seemed most likely to me that the first part which had the NDE components occurred while he was unconscious (this could have been in the anaesthetic room when he was first anaesthetised, in the operating room or when he was first admitted to intensive care – it was impossible to pinpoint exactly when it occurred). However, when he regained consciousness he was in great pain and probably frightened and anxious. His mind was trying to make sense of what was happening and after he was given the pain killer he became confused and actual occurrences such as the monitor alarming and the nurse looking after him were misinterpreted as something else in his mind which were very real to him at the time. His confusional experiences were far more predominant than the initial NDE-like part so I erred on the side of caution and didn’t include this patient in the NDE group but documented his case.
I was very fortunate to be able to conduct my research because being a nurse in the clinical area meant that I was able to investigate these cases either immediately or within a day or two of occurrence. It is really difficult to investigate hallucinations retrospectively because it is very difficult to establish exactly what was occuring objectively at the time the hallucinations were experienced. However, my research highlights that this is a fertile ground for more research. It would be great to do some more research prospectively in intensive care because the hallucinations can be investigated quite quickly and staff present can be interviewed to establish what was going on at the time and what things were going on in the background.