Terminal Lucidity - Death is not the End

Terminal Lucidity (TL) Brief - Marjorie Woollacott, PhD

Introduction

Terminal Lucidity is defined as the unexpected surge of mental clarity and memory shortly before death in a person with a terminal disease, including dementia and other end of life processes. This is not what one would expect at the end of life from our traditional medical perspective, which would predict only further mental decline in the last hours of life before passing. Thus, the phenomenon defies our traditional understanding of end-of-life processes.

Until recently, what we knew about terminal lucidity was simply published in case reports, which many clinicians would consider to be weak anecdotal evidence. Saying this, there have been 83 case reports published in the medical literature in the last 250 years, and TL has been noted in books throughout history (Nahm et al, 2012). In the past it was sometimes referred to as part of a category called lightening up before death, because it directly preceded the last clinical decline and death of a patient.

There was a more recent shift in the clinical awareness of this category of phenomenon, when, in a paper published in 2009, by Michael Nahm and Bruce Greyson, it was first given the name terminal lucidity. Though the name refers to enhanced mental clarity before death, it may also involve the return of physical abilities, including sitting, speaking, eating and saying goodbye. TL is seen in many diagnoses, including cancer, heart disease and stroke, but most often in dementia.

An example of TL in a patient with stroke was included in the review of TL by Nahm et al (2012). The case was originally described in 1952 (Noyes, 1952) and described TL in a woman who was 91 years of age and had suffered two strokes. The description notes that the first stroke paralyzed her left side and affected her speech. With the second she was now completely paralyzed, had no facial expression, and had no speech. Her daughter was with her just before death. She heard her mother exclaim something, smile brightly, turn her head and sit up in bed, raise her arms and joyously say her husband’s name. Then her arms dropped, and she sank back and died. This case of terminal lucidity clearly defies normal medical understanding in that the woman unquestionably regained the ability to move her body and speak, though she had been completely paralyzed since her second stroke (Nahm et al, 2012).

Recent Research on TL in Adults

In the early 2000s Peter Fenwick and his colleagues from the UK were some of the first researchers to examine the experiences of caregivers who had witnessed TL in nursing homes and hospices. They found that 70% of caregivers said they had witnessed TL in dying patients with dementia and severe cognitive impairment (Brayne et al, 2008; Fenwick et al, 2010). Alex Batthyany & Bruce Greyson performed one of the first detailed studies of TL in 2021, in which they surveyed clinicians about the characteristics of the phenomenon. In detailed reports of 124 patients with dementia, the clinicians rated 80% of the cases as complete remission with return of memory, orientation and normal verbal communication; they also stated that 90% of individuals were extremely cognitively impaired prior to the event.

This recent research interest in the phenomenon contributed to the sponsorship in 2019 of a workshop titled “Paradoxical Lucidity in Late-Stage Dementia” by the U.S. National Institute on Aging (NIA). The term paradoxical lucidity was used to broaden the definition to include episodes throughout the occurrence of the progression of dementia, rather than just end-of-life episodes. Basel Eldadah, who is the Supervisory medical officer at the National Inst. on Aging (NIA), stated in a blog from NIA,

“There is a phenomenon that does not fit our conceptions that is generating new interest. A number of case reports refer to an unexpected return of mental clarity in individuals with longstanding dementia or other neuropsychiatric conditions. It’s been called “paradoxical lucidity” due to its puzzling nature, or “terminal lucidity” because it seems to occur at the end of life. We convened experts in neuroscience, geriatrics, and other fields to discuss the available scientific evidence and identify research questions to advance the study of lucidity in people with dementia.”

This conference contributed to NIA releasing two “Lucidity in Dementia” funding opportunity announcements in 2020, and funding 6 projects (Eldadah et al, 2019).

One of the studies that has resulted from this research funding is by Griffin and colleagues (2024). The study involved interviews of family caregivers and aimed to determine if there were distinct types of lucid episodes in persons with late-stage Alzheimer’s disease and other types of dementia, as well as the relationship of these episodes to the end of life. Their results suggested the existence of different types of lucidity episodes with the three most frequent types (88%) episodes describe in persons with moderate to extreme cognitive difficulties, preceded by visits of family members. They occurred under a variety of circumstances with different levels of increased lucidity, and they happened from a week to more than 6 months before death. These could be defined as paradoxical lucidity, as they were not in the last stage of life. Finally, the least prevalent (12%) occurred close to death, with communication being very clear and happening during visits with family and friends. These would likely be termed terminal lucidity, due to the clarity of the episode and the proximity to death. This study is useful in exploring the spectrum of these episodes and giving a typology of different aspects of lucidity in patients with dementia. The authors conclude that their findings challenge the current medical assumptions of a linear cognitive decline for persons with dementia.

A second study (Karlawish et al, 2024) also focused on the broader definition of paradoxical lucidity in patients with dementia. They aimed to determine the characteristics and prevalence of paradoxical lucidity, interviewing caregivers of persons with severe-stage dementia. The increased mental capacities describe in these PL episodes included an increased awareness of surroundings, a recognition of specific persons, an increased understanding of others’ emotions and intentions, and the capacity to form and pursue a goal. They also concluded that these episodes of lucidity were common across the spectrum of the dementia population but infrequent in persons with severe end-stage dementia.

In an ongoing set of studies an international research team[1] has specifically explored terminal lucidity in both adults and children with terminal illnesses. Their aims were to more carefully define the characteristics of TL, to determine if there are potential triggers that contribute to eliciting episodes of TL (e.g., medication, treatment, disease progression and other confounding variables) (Roe, 2025; Woollacott, 2025; Tassell-Matamua, 2025; Rohrs et al, 2024). They created an online questionnaire, that aimed to capture significant details about the subjects who had experienced a TL episode. According to the survey of healthcare professionals and family members, episodes of TL in persons with terminal illness showed the following characteristics with high frequency: reduced mental impairment (92% of respondents), increased awareness and the ability to recognize others (80% of respondents), improved social interactions (74% of respondents), increased physical abilities (72% of respondents), as well as a positive and peaceful emotional state (60% of respondents). In addition, the found that the length of the episode and its closeness to death did not appear to affect the nature of the TL episode, except that episodes that were longer allowed opportunities for the individual to talk, eat, move, and converse with those close to them. About 62% of the episodes occurred within 24 hours of passing, and 57% of the episodes lasted 10 minutes or less, with 29% lasting an hour or more. Regarding the source or trigger for the episode, the results indicated that the majority of the individuals had neither a fever nor a change in medication or treatment before the TL episode. In support, almost every caregiver stated that they did not believe that changes in treatment, condition, or medication could have been responsible for triggering the episode.

The following is an example related by a nurse, of an episode of a few minutes of lucidity in a 63-year-old man within two hours of passing away. It also exemplifies a shift from severe mental impairment, not oriented in time, place or person – to amazing clarity.

A 63-year-old patient with an advanced brain tumor was unable to communicate for 2 weeks and wasn’t oriented in time, place or person. His condition deteriorated visibly and death seemed to be near. At night he was restless, his breathing was irregular. I sat down at his bedside and held his hand, which he refused to let go of. His breathing became shallower and he seemed more relaxed. Unexpectedly, he opened his eyes, looked at me and maintained eye contact. Then he addressed me by my name and said “I thank you for being here. I thank you in general for everything you have done for me and especially thank you for your accompanying me in dying. I was completely surprised by his sudden clarity, I was amazed that he knew my name and even more surprised by his choice of words. I never used this term, as it did not seem possible for us to accompany patients in dying. So not only was the patient’s sudden clarity, but also his choice of words remarkable. About 2 hours later, the patient passed away very quietly.

[1] The team of researchers includes Michael Nahm PhD, Inst. for Frontier Areas of Psychology, Freiburg, Germany; Natasha Tassell-Matamua PhD, Massey U., New Zealand; Bruce Greyson MD, U. of Virginia, Chris Roe PhD, U. of Northampton, UK; Marjorie Woollacott PhD, U. of Oregon; Philip Roehrs MD, U. of Virginia; Maryne Mutis PhD, U. of Lorraine, France; Evrard Renaud PhD, U. of Lorraine, France; Alex Gomez-Marin PhD, Inst. of Neuroscience, Alicante, Spain, Karalee Kothe MS, U. of Colorado.

Terminal Lucidity in Children

Reports of TL in children are not prevalent in the medical literature, though some exist (Doka, 2020; Hyslop, 1918; Nahm et al 2012; Morse & Perry, 1990); however a set of case studies was published in 2023 (Roehrs et al, 2024), and the preliminary results of a recent survey are now available (Tassell-Matamua and Kothe, 2025; Woollacott and Tassell-Matamua, 2024). These preliminary results suggest that TL episodes in children typically occur in the last days before passing. The results showed that 28% occurring in the last minutes, and 45% occurred in the last two days before passing. In addition, the duration of the episode was typically from a few minutes to one hour in length, though some were longer. The study also explored changes in mental clarity of the child as the episode progressed. The average mental impairment for the children before the TL event was moderate to severe and this shifted to close to no mental impairment during the episode. After the episode the children returned to considerable mental impairment, as they often entered a final coma and passed away.

The example, below indicates the calm lucid state of a young girl during the episode, as well as her vision of seeing a young girl who had died earlier who would be with her:

On the 28th, Maggie lapsed into a semi-comatose state and was mumbling in her sleep. Her parents and younger brother remained with her. We brought in lounge chairs and food for them. I met with the little boy to see how he was doing and to give the parents a break. That evening, Maggie came to alertness. Nurses reported that she told her parents not to worry about her as she had seen another child who had died a short time before and the child would be with her. Nurses report that Maggie was alert, spoke clearly and seemed at peace during this time. She died within an hour of becoming alert.

The Relevance of TL Research to Understanding the Nature of Consciousness and to Health Care

Why is the study of TL important? A first reason relates to its implications for medical care. For example, it is likely that changing the nature of medical care at the end stages of life could facilitate the emergence of TL. A large percentage of persons are in intensive care units when they pass, where TL experiences may not have the opportunity to emerge. Both the dying person and their relatives would likely feel anxious and distressed in this situation, leaving no opportunity for intimate conversations in these last hours of consciously being together. Thus, there is a need for more palliative care for individuals and their loved ones when the end of life is imminent.

A second broad and basic reason is that the study of TL has implications for the current scientific view of the nature of consciousness. The research data presented here do not support the theory that consciousness is solely the product of activity in specific brain networks. Thus, research on TL is contributing to a broader understanding of the nature of consciousness as a fundamental aspect of reality, with the brain being permissive, rather than productive of consciousness. This understanding that the fundamental nature of everything is consciousness promotes a sense of interconnectedness with other beings, including humans, animals and life on this planet.

References

Batthyány, A. & Greyson, B. (2021). Spontaneous remission of dementia before death: A study on paradoxical lucidity. Psychology of Consciousness: Theory, Research and Practice, 8, 1-8.

Brayne, S., Lovelace, H., & Fenwick, P. (2008). End-of-life experiences and the dying process in a Gloucestershire nursing home as reported by nurses and care assistants. American Journal of Hospice & Palliative Care, 25, 195–206. https://doi.org/10.1177/1049909108315302

Doka, K. (2020). When we die. Extraordinary experiences at the end of life. Llewellyn Publications.

Eldadah, B.A,, Fazio, E.M.,& McLinden, K.A. (2019). Lucidity in dementia: A perspective from the NIA. Alzheimer’s Dement. 15(8), 1104-1106.

Fenwick, P., Lovelace, H., & Brayne, S. (2010). Comfort for the dying: Five-year retrospective and one-year prospective studies of end-of-life experiences. Archives of Gerontology and Geriatrics, 51, 173–179. https://doi.org/10.1016/j.archger.2009.10.004

Griffin, J. M., Kim, K., Finnie, D. M., Lapid, M. I., Gaugler, J. E., Batthyány, A., … & Frangiosa, T. (2024). Developing and describing a typology of lucid episodes among people with Alzheimer’s disease and related dementias. Alzheimer’s & Dementia, 20(4), 2434-2443.

Hyslop, J. H. (1918). Visions of the dying. Journal of the American Society for Psychical Research, 12, 585–645.

Karlawish, J., Peterson, A., Kleid, M., Harkins, K., Largent, E.A., Stites, .S.D, Coykendall, C., & Clapp, J.T. (2024). Caregiver accounts of lucid episodes in persons With advanced dementia. Gerontologist. Jun 1;64(6):gnad170. doi: 10.1093/geront/gnad170.

Morse, M., & Perry, P. (1990). Closer to the light: Learning from the near-death experiences of children. New York, NY: Villard.

Nahm, M., & Greyson, B. (2009). Terminal lucidity in patients with chronic schizophrenia and dementia: A survey of the literature. Journal of Nervous and Mental Diseases, 197, 942–944. doi:10.1097/NMD.0b013e3181c22583

Nahm, M., Greyson, B., Kelly, E. W., & Haraldsson, E. (2012). Terminal lucidity: A review and a case collection. Archives of Gerontology and Geriatrics, 55, 138–142. doi:10.1016/j.archger.2011.06.031

Roe, C. (2025). Terminal Lucidity in adults: A new case collection. In: Nahm M, Woollacott M, Tassell-Matamua N, eds. On the Banks of River Styx: New Perspectives on Terminal Lucidity and other Near-Death Phenomena. 2025. AAPS Press. pp 19-34

Roehrs, P., Fenwick, P., Greyson, B., Kellehear, A., Kothe, K., Nahm, M., Roe, C., Tassell-Matamua, N., & Woollacott, M. (2024). Terminal Lucidity in a Pediatric Oncology Clinic J Nerv Ment Dis.,Jan 1;212(1):57-60. doi: 10.1097/NMD.0000000000001711. Epub 2023 Sep 13.

Noyes, M. (1952). A true account of a beautiful passing. Light, 72:65.

Tassell-Matamua, N. & Kothe, K. (2025). Lucidity. An introduction, some case examples in children and questions they raise. In: Nahm M, Woollacott M, Tassell-Matamua N, eds. On the Banks of River Styx: New Perspectives on Terminal Lucidity and other Near-Death Phenomena. AAPS Press. pp 6-18

Woollacott, M. (2025) Implications of terminal lucidity for consciousness studies and health care. In: Nahm, M., Woollacott, M., Tassell-Matamua, N., eds. On the Banks of River Styx: New Perspectives on Terminal Lucidity and other Near-Death Phenomena. AAPS Press. pp 47-60.

Woollacott, M., & Tassell-Matamua, N. (2025). Lucidite terminale chez les enfants: Une etude enc cours [Terminal lucidity in children: An ongoing study]. In C. Fawer (Ed.), Ces enfants qui dissent voir ou entendre des defunts [Children who say they see or hear the deceased] (pp. 85–99). Editions Exergue.