Existential loss in the context of Motor Neurone Disease: A hermeneutic phenomenological study

Abstract

Motor Neurone Disease (MND) is a rare, devastating neurodegenerative disease of middle/later life, usually presenting in the sixth and seventh decades (McDermot and Shaw, 2008). People have to wait many months to receive their diagnosis of MND (Donaghy, Dick, Hardiman and Patterson, 2008), and 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 aim was to answer the research question: “What does it mean to be a person living through the illness trajectory of MND?” and to study the phenomenon of existence when given a diagnosis of MND and in the context of receiving health care. Hermeneutic phenomenology informs the methodological approach which asks the question: “Can you please tell me the story of your life... since you first thought there might be something wrong with you?” Hermeneutic analysis involved a five-stage process in order to understand (interpret) the lifeworld of four people diagnosed with MND. A lifeworld perspective helped to make sense of the meaning of existence when given a terminal diagnosis of MND. The concept of ‘existential loss’ identified in relation to MND was a loss of past ways of being-in-the-world: loss of embodiment, loss of spatiality, and loss of future. The concept of existential loss require closer attention by health care professionals from the time of diagnosis and through the illness trajectory. The findings are conceptualised into a framework which, used as a clinical tool, may prompt health care professionals to focus on their patient’s existential loss and existential concerns. This study adds to the existing literature that is calling for a lifeworld approach to health care.