Maryne Mutis1, Renaud Evrard1 & Marie Frédérique Bacqué2
1Université de Lorraine, Nancy, France
2Université de Strasbourg, Strasbourg, France
Introduction: The ‘Lucideuil’ project is a research project within the framework of a thesis, with the aim of exploring the phenomenon of terminal lucidity and its clinical repercussions. The main objective is thus to study the supposed effect on the bereavement process of families and on the practices of professionals. The phenomenon of terminal lucidity, a term proposed by Michael Nahm (2009), is still the subject of debate regarding its forms and manifestations. However, a synthetic definition can be proposed as a total or partial recovery of the cognitive and/or motor functions of a dying person (Mutis et al., 2019).
This phenomenon may seem to indicate an improvement in the general condition of patients, but the various accounts and research show that terminal lucidity is only a transient event occurring minutes, hours or days before death (Nahm et al., 2012; Chiriboga-Oleszczak, 2017). Such spontaneous recovery is particularly striking when it occurs in people whose cognitive and motor functions had been objectively degraded for years (Nahm & Greyson, 2009; Nahm et al., 2012; Mutis et al., 2019; Mashour et al., 2019). However, it is mentioned in a very wide range of conditions involving impairment of people’s cognitive or physical state.
Despite various avenues of work and exponentially increasing research, the current state of knowledge on this phenomenon still does not allow for a consensual explanation or the formulation of definitive explanatory models (Nahm et al., 2012). The only conclusion that can be drawn about terminal lucidity is that this phenomenon is a reality, and there are ample testimonies of its existence over several centuries (Peterson et al., 2021; Ney et al., 2021). The literature also points out that multiple factors seem to be at the origin of such a phenomenon, notably because of the diversity of pathologies involved (Nahm, 2009). Due to its enigmatic nature, this phenomenon is therefore placed in the field of parapsychology and more particularly, that of unusual end-of-life experiences.
As is the case with terminal lucidity, unusual end-of-life experiences are eventually found to be not so unusual and have been reported in many cultures and for a long time in human history (Fenwick et al., 2009; Devery et al., 2015). In particular, researchers in this field have focused on the impact of these phenomena, noting that end-of-life experiences such as terminal lucidity are seen as meaningful and spiritual experiences that bring relief and comfort to both the dying and their loved ones, and can then help them to better prepare for the coming death (Brayne et al., 2006; Fenwick et al., 2007; Santos et al., 2016; Klein et al., 2018; Grant et al., 2020). Beyond these various benefits, there are unfortunately still reservations about talking about such experiences, particularly in relation to fear of ridicule, fear of not being believed, fear of being discredited as a professional or not having the opportunity to talk about it with professionals (Brayne & Fenwick, 2008; Fenwick & Brayne, 2011; McDonald et al., 2014; Devery et al., 2015).
Methods: The central approach was conducted retrospectively with two groups who attended to a terminal lucidity episode. One group was made up of the patients’ families, the other of caregivers, with the idea of gathering complementary views on the phenomenon. Twenty semi-structured interviews were obtained in each group. A sample was transcribed and studied using interpretative phenomenological analysis. The participants also completed a questionnaire to obtain quantitative data on the course of the episode.
Results: On the side of families, when terminal lucidity can be invested as a last opportunity to prepare for death by exchanging with the dying person on his or her life history or trajectory, it can indeed allow an acceleration of the grieving process despite the pain of the loss. However, when it is not possible for families to make sense of this phenomenon or when it is invested as a miracle cure, terminal lucidity can be a source of suffering and potentially traumatic for the grieving process, because of its brutal and enigmatic character. On the side of the caregivers, terminal lucidity would come as an event to be welcomed in the care. It can then be heard as an alarm signal, leading to greater attention being paid to the dying person’s last requests and thus contributing to better support and professional satisfaction. However, it can also cause difficulties or suffering because of the questions raised concerning the patient’s place in the care.
Discussion: It emerges that communication around the end, allowing for a sense of meaning, could make terminal lucidity a help rather than a source of difficulty. It is therefore essential to promote better knowledge of the phenomenon among health care teams and professionals. They can then better support families by helping them to appropriate this event. It seems equally necessary and important to open up spaces for the general public to speak out and provide information about this little-known and inexplicable phenomenon.
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Mutis, Maryne is a clinical psychologist and a doctoral student in psychology at the Interpsy Laboratory, University of Lorraine (France). She works in particular on exceptional experiences, especially those at the end of life, as well as on the mourning process, end-of-life support and palliative care.
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