Updated: Oct 27
Objective: Motor neuron disease, (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot & Shaw, 2008). People have to wait many months to receive a diagnosis of MND (Donaghy et al., 2008), and during this period, they have already experienced the degenerative nature that characterises MND (Bolmsjo¨, 2001). However, information on the meaning of life with MND through time is limited.
The present research aimed to answer the question “What does it mean to be a person living through the illness trajectory of MND?” and to research the phenomenon of existence when given a diagnosis of MND and in the context of receiving healthcare.
Method: Hermeneutic phenomenology, inspired by the philosophers Heidegger and Gadamer, informed the methodological approach employed, which asked people to tell their story from when they first thought something untoward was happening to them. The hermeneutic analysis involved a five-stage process to understand (interpret) the lifeworld of four people diagnosed with MND, and a lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND.
Results: The concept of “existential loss” identified about MND was the loss of past ways of being in the world and the loss of embodiment, spatiality, and the future. Significance of results: The concept of existential loss requires closer attention by healthcare professionals from the time of diagnosis and on through the illness trajectory. The study findings are conceptualised into a framework, which, when used as a clinical tool, may prompt healthcare professionals to focus on their patients’ existential loss and concerns. This research adds to the existing literature calling for a lifeworld approach to healthcare.
Keywords: Existential loss, Martin Heidegger, Hans-Georg Gadamer, Existential hermeneutic phenomenology motor neurone disease
Harris, D.A. (2015) Lived-through past, experienced present, anticipated future: Understanding “existential loss” in the context of life-limiting illness. Palliative and Supportive Care 13, 1579–1594. https://doi.org/10.1017/S1478951515000620