There are a number of well-known mysteries surrounding consciousness at the time of death, from near-death experiences (NDEs) to death-bed visions (see my book Stop Worrying! There Probably is an Afterlife for detailed discussion).
One of lesser discussed phenomena though is that of ‘terminal lucidity’: cases in which patients with severe cognitive and/or physical impairment suddenly and unexpectedly become aware of their environment and interact with family and carers. Also sometimes referred to as ‘lightening up before death’, or ‘premortem surge’, this phenomenon is difficult to explain in terms of mainstream brain science, as they occur in situations where the medical diagnosis makes the possibility of spontaneous remission unlikely.
Nevertheless, it seems to be a fairly common occurrence – in a British survey of caregivers, approximately 70% stated they had witnessed terminal lucidity in the preceding five years in dying patients, while an Irish study found that 57.5% of palliative carers reported ‘Patients in a deep coma becoming suddenly alert enough to say goodbye to relatives’.
The growing interest in this phenomenon is reflected in the recent publication of a paper on the topic in The Journal of Nervous and Mental Disease, which recounted a small number of accounts of terminal lucidity in children shortly before their death. The paper, “Terminal Lucidity in a Pediatric Oncology Clinic“, includes among its authors some of the most respected names in ‘survival of consciousness’ research, including Bruce Greyson, Peter Fenwick and Allan Kellehear.
For example, one patient – a 3-year-old girl with hemophagocytic lymphohistiocytosis (HLH) – was suffering ongoing organ failure, and after being transferred to the ICU, had become encephalopathic and was no longer speaking, eating, or responding to parents and care providers. Some weeks later, on the same day that the parents had changed her status to ‘Do not resuscitate’, she suddenly awoke…
…and asked for her usual comfort items (i.e. Lion King movie, parents, toys) and food. She showed no indication of mental impairment and regained the ability to sit up in bed and participate in coloring and other simple age-appropriate tasks.
She spoke using logical, organized full sentences, and had multiple conversations with her parents that evening, which they and the bedside nurse described as “like a miracle.”
…She indicated awareness of transitioning to death and reassured loved ones of the need not to be concerned about her.
Interestingly, the researchers report that beyond the people who were in the room with her, the girl also seemed to be communicating with people who were not visible (a common aspect of death-bed vision cases).
After several hours, she then asked to “go to bed” and returned to her comatose state – over the next two days, she never awoke again and died peacefully of cardiac arrest in her parents’ arms.
The paper’s authors note that it is vital to study cases such as this “through systematic investigation” as they have important implications “for patients, caregivers, medical professionals, and systems of care at the end of life”, allowing for more informed decisions by family, caregivers and medical staff about further treatment.
But to do so, they note, it might be necessary to overcome some taboos about reporting of anomalous experiences at the time of death, as medical professionals are sometimes reluctant to do so “due to concerns that a willingness to describe such experiences would be considered a sign of uncritical credulity or dismissed as lacking scientific validation”:
Limited understanding of a phenomenon should not equate to lack of engagement with that phenomenon, particularly because unusual episodes of lucidity close to dying have been discussed by physicians since at least the 19th century…
…Beyond their potential for enhancing understandings about previous prevalence, the immediate imperative for further research into terminal lucidity in children is to explore their potential for advancing pediatric palliative care and intellectual understandings of cognitive function in children at the end of life.
